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CASES OF C0MMUNICATION

COLLECTED FROM MEDICAL MASTERCLASS

CASE 1 Advising a patient against unnecessary investigations


CASE 2 Explanation of uncertainty of diagnosis
CASE 3 Discussion of the need to screen relatives for an inherited condition
CASE 4 Communicating news of a patient’s death to a spouse
CASE 5 Explanation to a patient of the need for investigations
Case 6 Explanation to a patient who is reluctant to receive treatment
Case 7 Lifestyle modification
Case 8 Possible cancer
case 9 Potentially lifethreatening illness
case 10 Sudden unexplained death
CASE 11 Intubation for ventilation
case 12 Patient refusing ventilation
case 13 Persuading a patient to accept HIV testing
Case 14 Talking to a distressed relative
Case 15 Explaining a medical error
Case 16 Breaking bad news
case 17 Cardiac arrest
Case 18 Stroke
Case 19 Congestive cardiac failure
Case 20 Lumbar back pain
Case21 Collapse during a restaurant meal
Case 22 percutaneous endoscopic gastrostomy (PEG)
Case 23 Fever, hypotension and confusion
Case 24 A swollen red foot
Case 25 Still feverish after 6 weeks
Case 26 Chronic fatigue
Case 27 Malaise, mouth ulcers and fever
Case 28 Don’t tell my wife
Case 29 Renal disease in pregnancy
Case 30 A new diagnosis of amyloidosis
Case 31 Is dialysis appropriate?
Case 32 Genetic implications
Case 33 Explanation of the diagnosis of Alzheimer’s disease

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Case 34 Prognosis after stroke
Case 35 Conversion disorder
Case 36 Explaining the diagnosis of multiple sclerosis
Case 37 Frequent falls
Case 38 Confusion
Case 39 Collapse
Case 40 Explaining an uncertain outcome
Case 41 The possibility of cancer
Case 42 No medical cause for hirsutism
Case 43 A short girl with no periods
Case 44 Simple obesity, not a problem with ‘the glands’
Case 45 I don’t want to take the tablets
Case 46 Limitation of management
Case 47 Limitation of investigation
Case 48 A patient who does not want to give a history
Case 49 Cold fingers and difficulty swallowing
Case 50 Back pain
Case 51 Widespread pain
Case 52 Explain a recommendation to start a disease-modifying antirheumatic drug
Case 53 Community-acquired pneumonia
Case 54 Acute pneumothorax
Case 55 Am I at risk of cancer?
Case 56 Consent for chemotherapy (1)
Case 57 Consent for chemotherapy (2)
Case 58 Don’t tell him the diagnosis

CASE 1

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ADVISING A PATIENT AGAINST UNNECESSARY INVESTIGATIONS

ROLE: you are a junior doctor in a cardiology outpatient clinic.


Miss Jenny Pinto, aged 28 years, has been referred to the clinic for investigation of palpitations.
She had previously not been worried about these symptoms, but recent knowledge of the deaths of
two relatives following sudden collapses has made her very concerned.
At her first appointment it became clear from her history that the palpitations were consistent with
ventricular ectopic beats.
Examination was normal, as was a routine 12-lead ECG.
Echocardiography showed her heart to be normal and a 24-hour ECG demonstrated ectopic beats
when she was symptomatic.
She is keen to have further investigations, but these would not be appropriate.
YOUR TASK:
to reassure Miss Pinto that her condition is benign and explain that further investigations are not
necessary.
KEY ISSUES TO EXPLORE
☒ What is the patient’s main concern?
☒ Why does she want further investigation?
☒ Does her desire stem from the actual symptoms or the perceived risk from the condition in
view of her family history?

KEY POINTS TO ESTABLISH


▪ Reassure the patient that the diagnosis of ectopics is certain, as her symptoms have been
clearly correlated with ectopics on the 24-hour ECG.
▪ Additional reassurance is often provided when patients understand that most people have
ectopic beats at some stage every day, the majority of whom are unaware of them.
▪ Some people have a lot more ectopics than others, but this does not signify anything if the
heart is normal.
• In this case we know from investigations that her heart is normal and further tests will add
nothing to this.
• It is important that the patient understands her symptoms are not being dismissed.
• An explanation that ectopic beats can be very debilitating in some people can reassure.
• Further, knowing the symptom is benign often leads to a significant improvement in the degree
of intensity and awareness the patient feels.

APPROPRIATE RESPONSES TO LIKELY QUESTIONS


WHAT CAN I DO TO MAKE THEM GO AWAY ? PATIENT:

• in many cases they will just settle down without needing to do anything. DOCTOR:
• Some people find that they are worse after alcohol or after drinks containing
caffeine.
• It might be worthwhile trying to reduce your intake of these to see whether the

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symptoms improve.
• Other people find relaxation tricks such as taking a few deep breaths or lying
down can be helpful.
ARE THERE ANY TABLETS THAT YOU CAN GIVE ME TO HELP WITH THEM? PATIENT:

• there are drugs that can help suppress the symptoms, but these ectopic beats DOCTOR
are, essentially, a normal heart rhythm.
• We would not generally advise patients to take any medication unless absolutely
necessary, because you can end up with more symptoms from the side effects of
the medication than the actual palpitations themselves.
• If you are desperate to take something\for these then beta-blockers may help.
• I can explain how they work and what side effects they might cause.
AM I LIKELY TO DIE SUDDENLY LIKE MY RELATIVES? PATIENT:

• it is difficult to answer this question without further knowledge of exactly what DOCTOR:
was responsible for the deaths of your two relatives.
• However, we have very carefully assessed your heart and can find no problems
that would give us cause for concern at all.
• I can certainly reassure you that the palpitations will not cause you to die.
I AM REALLY WORRIED ABOUT THESE SYMPTOMS. PATIENT:

WOULD IT BE POSSIBLE TO HAVE A SECOND OPINION?

• of course you can. DOCTOR:


• Either your GP or I can organise this for you, but I would emphasise that all of the
investigations have been reassuring and we know that these ectopic beats,
whilst unpleasant, are not in any way life-threatening, but if you’d like to have a
second opinion, then I can help arrange this.

CASE 2

EXPLANATION OF UNCERTAINTY OF DIAGNOSIS

ROLE: you are a junior doctor working on a general medical ward.

A 65-year-old man is admitted to your ward from the Emergency Department following an
unexplained syncope while shopping.
There have been no previous episodes and since his arrival on the ward he has been alert and
orientated with normal observations.
Physical examination and investigations including ECG, CXR and blood tests (including troponin at12
hours after the collapse) have been normal.
His telemetry up to this point has shown no abnormalities.

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The plan agreed after consultant review on the ward round is to discharge him home, with
arrangements for an outpatient 24-hour tape and echocardiogram.

YOUR TASK:
to explain to his wife the uncertainty of the diagnosis and what the management plan is likely to be.
KEY ISSUES TO EXPLORE
▪ What is the wife’s current level of understanding of events?
▪ What are her concerns and expectations regarding her husband’s condition and treatment?

KEY POINTS TO ESTABLISH


• Firstly, establish that you have the patient’s consent to talk to his wife about his condition.
• Explain that the cause of the collapse is uncertain, but initial assessment has so far been
reassuringly normal, as have the appropriate investigations.
• Reassure her that this is a common presentation and that the vast majority of syncopal
episodes have a benign cause.
• Explain that sometimes an exact diagnosis is not determined, and the importance of
investigations is to rule out the more serious causes for which there are effective treatments
rather than to pinpoint the specific cause.

APPROPRIATE RESPONSES TO LIKELY QUESTIONS


WHAT CAUSED MY HUSBAND TO COLLAPSE? WIFE
▪ at the moment it is not possible to give an exact cause, but the most DOCTOR
common cause of collapse is a simple faint.
▪ We will make a plan to do further tests, mainly to rule out other causes.
DOES THIS MEAN THAT THIS WILL NEVER HAPPEN AGAIN? WIFE
▪ unfortunately there is no guarantee that the symptoms will not reoccur, but DOCTOR
the fact that he is well now, that there are no abnormalities when we
examine him, and that the initial tests, the EGG (an electrical tracing of his
heart), a CXR (a chest X-ray) and blood tests, are all normal, makes it less
likely that there is a serious underlying cause.
YOU SAID HE NEEDED MORE TESTS : WHAT ARE THESE?
WIFE
▪ it’s very unlikely that they will show anything worrying, but to be on the safe DOCTOR
side we plan to organise for a 24-hour tape recording of his heart beat to
check that it doesn’t go too fast or too slow at any time, and an

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echocardiogram– that’s a special scan – to look at the heart in more detail
than you can see on the CXR.
▪ We plan to do these with your husband as an outpatient.
CAN’T THESE TESTS BE DONE BEFORE HE GOES HOME? WIFE
▪ I’m afraid that we can’t do them right away. DOCTOR
▪ Your husband seems well now and when the consultant saw him earlier on
we agreed that we didn’t need to keep him in hospital and would do the
tests as an outpatient?.
CAN HE DRIVE? WIFE
▪ not at the moment. DOCTOR
▪ However, if he has no recurrence of his symptoms then he can return to
driving in 4 weeks (see Section 2.19).
▪ However, if there are any further symptoms then he should await the results
of his remaining investigations and clinic review before recommencing
driving.
WILL A PACEMAKER HELP? WIFE:
▪ at this stage there is no evidence that a pacemaker would be DOCTOR
▪ helpful.
▪ The results of his tests will help decide whether this needs to be considered in
the future.
WHAT HAPPENS IF HE COLLAPSES AGAIN AT HOME? WIFE
▪ as I’ve explained, we don’t think that this is likely or we wouldn’t be DOCTOR
suggesting that he goes home.
▪ If he does collapse, then– the same as if you or I were to collapse – you
would need to call the doctor or an ambulance.

CASE 3

DISCUSSION OF THE NEED TO SCREEN RELATIVES FOR AN INHERITED CONDITION

ROLE: you are a junior doctor in a cardiology outpatient clinic.

Mr Patrick McDonagh is a 37- year-old builder and father of three who was admitted on the medical
ward with a syncopal episode 2 months ago.
He has been previously fit and well.
Examination on admission revealed a normal pulse rate, but his BP was elevated persistently at
160/95 mmHg.
There was a soft ejection systolic murmur over the left sternal edge.
His ECG was normal apart from large-voltage complexes consistent with left ventricular hypertrophy.
He was discharged and prescribed atenolol for his hypertension, and arrangements were also made
for him to have a 24-hour ECG and an echocardiogram as an outpatient.
The 24-hour ECG was normal but the echocardiogram demonstrated severe hypertrophic
cardiomyopathy (HCM) with an outflow tract gradient of 50 mmHg, following which an
urgent appointment for the cardiac clinic has been made.
His GP has told him that the condition can affect the family, and he is concerned about this.

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HCM is typically an autosomal dominant disorder with very variable manifestations: some
people with the condition have no problems, but others die suddenly.
Further investigation, eg electrophysiological studies, will be advised.
YOUR TASK: to explain the diagnosis of HCM and the potential genetic implications of the
condition.
KEY ISSUES TO EXPLORE
☒ Has the patient had any further symptoms since discharge?
☒ What does he understand about his condition and what are his main concerns regarding his
family?
KEY POINTS TO ESTABLISH
☒ Establish that there are two main issues to be explored:
• firstly, the impact of HCM on the patient and the potential need for him to have further
investigations;
• secondly, the hereditary nature of the condition.
☒ It is important to understand precisely why the patient is concerned about the impact of the
diagnosis on his family.
☒ Is his main concern the impact of his health (or ill-health) on the family?
☒ Has he understood the genetic aspect of the condition?
☒ Or are both issues of concern to him? Both are very important, but an understanding of the
patient’s main concern will allow a more productive consultation.

APPROPRIATE RESPONSES TO LIKELY QUESTIONS


I FEEL GREAT NOW. PATIENT:
DOES THIS MEAN I DON’T NEED ANY FURTHER TESTS?
• that is really good news and an excellent sign, but it is important that we do DOCTOR:
further tests of your heart as some patients with this condition can have very
serious problems later on.
DOES THIS MEAN I AM GOING TO DIE? PATIENT:
• that’s not what I said, but a small number of patients with this condition are at DOCTOR:
risk of dangerous heart rhythm problems and sudden blackouts.
• The further tests will help us assess whether you are at risk of this.
• If you are, then there are a number of ways that we can reduce this risk
HAVE I GIVEN THIS TO MY CHILDREN? PATIENT:
• I assume that none of your children have had any heart problems so far? DOCTOR:
[Patient confirms that they have not.]
• But yes, this condition can be passed on to your children.
WHAT ARE THE CHANCES THAT MY CHILDREN HAVE IT? PATIENT:
• because of the way it runs in the family the chances for each child are about DOCTOR:
50/50.
• So at some stage it will be important for you to have your children seen by a
specialist, when a simple test like an ultrasound scan of the heart may allow
the diagnosis to be made.
• However, it’s not always possible to say that a child definitely does not have the

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condition.
IS THERE A BLOOD TEST THAT WILL ENABLE A DIAGNOSIS TO BE MADE? PATIENT:
• at the moment there is no single test that will give a definite diagnosis. DOCTOR:
• There have been a lot of advances in the genetic testing of blood samples that
may allow us to get this answer in the future, and we can refer you to a clinical
geneticist who will be able to give you more information on the inherited aspect
of the condition.

CASE 4

COMMUNICATING NEWS OF

A PATIENT’S DEATH TO A SPOUSE

ROLE: you are a junior doctor on a coronary care unit.

Mr Smith, a 40-year-old man, is admitted from work with a large anterior myocardial infarct, which is
treated with thrombolysis. Unfortunately he arrests and, despite prolonged attempts at resuscitation,
he dies. His wife arrives 5 minutes after he dies.

YOUR TASK: to inform Mrs Smith that Mr Smith is dead


KEY ISSUES TO EXPLORE
▷ What does the patient’s wife know already?
▷ She will be more prepared for bad news if she knows he is gravely ill than if she doesn’t know
why he is in hospital.
▷ Explaining an unexpected death is one of the most difficult communication tasks that a
medical professional has to perform:
▷ if it is done with compassion and sensitivity it can ease the inevitable distress that family and
friends will go through.
KEY POINTS TO ESTABLISH
▷ Find a quiet room, if possible a relatives’ room, and ask the nurse looking after the patient to
accompany you.
▷ Leave your pager with someone else so that you are free of interruptions.
▷ There is no hiding from the fact that you must inform Mrs Smith that her husband has had a
heart attack and unfortunately has not survived.
▷ State that you and the team did what you could, and say how sorry the whole team is.
▷ Demonstrate empathy: if it feels appropriate hold her hand or touch a non-threatening area,

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such as the arm or the shoulder.
▷ Wait until asked to explain details, but keep it simple.
▷ Allow her to cry with dignity, such as by handing her some tissues.
▷ Do not be afraid of silence, but if this becomes uncomfortable it is often helpful to make an
open statement, such as ‘This must have come as a shock’.
▷ In finishing the discussion, explain that should further questions arise you will be happy to
answer them.
▷ Also say that you will have to notify the coroner, which is routine following any unexpected
death, and that the nursing staff will provide her with information about practical matters such
as death certification.

APPROPRIATE RESPONSES TO LIKELY QUESTIONS


WIFE: WHAT’S HAPPENED?
DOCTOR: • [After ascertaining that she knows that her husband was brought into hospital
as an emergency, but not that he has died; and speaking quietly, slowly and
deliberately to let the information sink in.] Your husband was brought to the
hospital as an emergency.
• He was very unwell: he had suffered a big heart attack.
• We gave him the best treatment we could – an injection of a drug designed to
open up the artery that had blocked off – but I’m afraid that things did not go
well.
• The damage to his heart was too great, it couldn’t beat properly and, despite us
doing everything we could, he passed away.
WIFE: YOU MEAN HE’S DEAD?
DOCTOR: • yes. I’m very sorry, but I’m afraid he’s dead.
WIFE: WHY DID THIS HAPPEN ?
DOCTOR: • I don’t know why it happened, but he had a big heart attack.
• This must mean that the blood vessels going to his heart muscle were
narrowed, and that one of them blocked off and gave him a heart attack.
WIFE: BUT PEOPLE CAN SURVIVE HEART ATTACKS, WHY DIDN’T HE?
DOCTOR: • you’re right, many people do survive heart attacks, but I’m afraid that many also
don’t.
• Sometimes the heart attack is so big that it damages too much of the heart
muscle for the heart to work at all; and sometimes the heart attack affects the
wiring mechanism that makes the heart beat in a regular manner, so that
instead of pumping in a normal way the heart can’t pump at all.
• I’m sorry to say that both of these things happened in your husband’s case.
WIFE: WHY COULDN’T YOU BRING HIM BACK TO LIFE?

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DOCTOR: • we did absolutely everything we could to restart his heart, but he had suffered
such a large heartattack that this wasn’t possible.
• We tried everything we could to resuscitate him, but I’m afraid that it didn’t
work.
WIFE: DID HE SUFFER?
DOCTOR: • No – it was very quick and he was unconscious throughout, so he wasn’t aware
of what was going on and he would not have suffered.
WIFE: WILL HE HAVE A POST-MORTEM?
DOCTOR: • it is unlikely that he will have to have a post-mortem.
• We will need to inform the coroner, which is something that we have to do after
any unexpected death, and very occasionally they will insist on a post-mortem.
• However, I think this is very unlikely in this case, because we know why your
husband died.
• If you would like further information about his health and how he died then we
can request a hospital post-mortem, but it may be difficult for you to discuss
this now.
• We can talk about this again later if you want to.

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CASE 5

EXPLANATION TO A PATIENT OF THE NEED FOR INVESTIGATIONS


ROLE: you are a junior doctor working on a cardiology ward.

Mr Hugh Jones, aged 23 years, has congenital heart disease.


He was admitted from clinic for further investigations into the cause of his breathlessness.
The view of the cardiac team is that it will not be possible to give best advice about prognosis and
treatment without information from a cardiac catheterisation study, but he is refusing to consent.
YOUR TASK:
to determine what concerns Mr Smith has and explain the purpose of further investigation.
KEY ISSUES TO EXPLORE
▷ First find out what the patient knows about his condition: he may be concerned that nothing
can be done or be in denial about the seriousness of the problem.
▷ Then establish what he knows about cardiac catheterisation and his fears about the
procedure: some patients are worried about pain and discomfort, whereas others worry about
complications.
▷ Try and put any such fears in perspective.
▷ Explain any alternative investigative strategies that are available, but also why a cardiac
catheterisation study is needed to give him best advice about his condition.
▷ If possible offer him information booklets and if there is a specialist nurse available, ask him
or her to speak with the patient.
KEY POINTS TO ESTABLISH
▷ Mr Smith does not have to undergo any investigation or treatment unless he agrees to it.
▷ He will still receive care even if he does not undergo the investigations recommended, but a
proper investigation may improve the care that can be given to him and thus alleviate some of
his symptoms.

APPROPRIATE RESPONSES TO LIKELY QUESTIONS


MR SMITH: I FEEL FINE.
DOCTOR: • I hear what you say, but you went to the doctor because your breathing isn’t
as good as it should be and it looks as though this is due to a problem with
your heart.

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MR SMITH: BUT THE PROBLEM ISN’T VERY BAD.
DOCTOR: • I know that things aren’t terrible at the moment, but we have found a
problem with the heart that could be serious and which may get worse.
• It may be that treatment now can improve things so that they don’t get any
worse, or the rate of any deterioration can be slowed down so that you will
feel well for longer.
MR SMITH: CAN YOU GUARANTEE THAT THE PROBLEM CAN BE SORTED?
DOCTOR: • no, I’m afraid that I can’t.
• Until we know exactly what the problem is, we won’t be able to tell you.
MR SMITH: I STILL DON’T LIKE THE IDEA OF A CARDIAC CATHETER.
IS THERE AN ALTERNATIVE?
DOCTOR: • yes, we can and will do scans that will give us some information.
• However, cardiac catheterisation gives us the most important information,
such as the amount of oxygen in the chambers of the heart, which we
cannot get in any other way.
• We wouldn’t recommend this if there were better alternatives.
MR SMITH: WILL IT HURT?
DOCTOR: • the procedure may be uncomfortable while the local anaesthetic is being
given.
• This lasts a few minutes and after this it should not be uncomfortable.
• It’s a bit like going to the dentist: the injection is unpleasant, but then
• things go numb.
MR SMITH: COULD I DIE DURING THE PROCEDURE?
DOCTOR: • that’s very unlikely indeed.
• This is a routine procedure, although as you can imagine any procedure
involving the heart carries a small risk, but it is very small.
• The risk of death is 1 in 4,000, which means that 3,999 survive out of 4,000
people undergoing the procedure.

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CASE 6

EXPLANATION TO A PATIENT WHO IS RELUCTANT TO RECEIVE TREATMENT

ROLE: you are a junior doctor in a medical outpatient clinic.


Mrs Jessica Yelland, aged 30 years, has been found to be significantly hypertensive when she came
to her GP’s family planning clinic.
Her BP has been measured on several occasions and found to be consistently in the region of
180/100 mmHg.
It has been explained to her that she has high BP that requires investigation and treatment,
but she feels well and only wants a prescription for the oral contraceptive pill, not any tests or
medication.
YOUR TASK: to inform Mrs Yelland why investigations and treatment are required.
KEY ISSUES TO EXPLORE
▷ The key to a successful outpatient consultation will be to understand the reason why the
patient does not want further investigation or treatment.
▷ Does she feel that investigation and treatment are unnecessary because she feels well?
▷ Is she afraid of what may be found?
▷ Is she concerned about the effects of treatment?
KEY POINTS TO ESTABLISH
▷ It is very important to establish a rapport with this woman so that she will trust you and thus
hopefully follow the recommended management plan.
▷ Explain to her that hypertension is a common and often asymptomatic condition that is
frequently detected on routine screening, or incidentally as part of investigations for other
medical problems.
▷ It is important that she understands what hypertension is and why it should be taken
seriously, even in the absence of any complaints or limitations: the potential harmful effects of
longterm high BP must be explained.
▷ She will need reassurance and an explanation that investigations are necessary to exclude a
secondary cause of high BP, which might mean that the hypertension can be cured and that
she would not need longterm treatment.
▷ If no specific cause for hypertension is found, then simple changes to her lifestyle may be
adequate to treat her BP.
▷ But in some situations this is not enough and she may require medication.
▷ Your advice should be accompanied by provision of reading material and help with associated
programmes for smoking cessation, weight loss and dietary advice.
▷ But remember that most patients diagnosed wih hypertension perceive themselves as being
healthy and leading a normal lifestyle with no day-to-day limitations; hence starting treatment
and addressing lifestyle issues can be difficult and in some cases unacceptable.

APPROPRIATE RESPONSES TO LIKELY QUESTIONS


PATIENT: I FEEL VERY WELL AND ONLY WENT TO THE DOCTOR FOR A PRESCRIPTION, SO I
CAN’T HAVE MUCH OF A PROBLEM, CAN I?

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DOCTOR: ▷ high blood pressure is a very common condition that can affect up to 20% of
people.
▷ As in your case, high blood pressure is often discovered when someone has
their blood pressure measured for an entirely unrelated problem.
▷ The fact that it was discovered for that reason does not mean that having high
blood pressure is unimportant.
PATIENT: WHAT WILL HAPPEN IF I HAVE NOTHING DONE?
DOCTOR: ▷ over a period of many years high blood pressure can result in serious damage
to many important organs in the body.
▷ For example, if untreated it can lead to major heart problems and strokes, and
very rarely it can result in problems with the eyes that can affect normal vision
and in extreme cases may result in blindness.
▷ However, all these problems can be avoided by achieving good blood pressure
control.
PATIENT: WHAT CAUSES HIGH BLOOD PRESSURE?
DOCTOR: ▷ a good question, and I wish I could give you a good answer.
▷ For most patients we don’t know, but in some cases it can be caused by
problems with the kidneys or glands so we will recommend some tests – blood
tests and urine tests – to see if this might be the case for you.
PATIENT: HOW CAN YOU TELL IF HIGH BLOOD PRESSURE IS CAUSING DAMAGE TO THE BODY?
DOCTOR: ▷ by examining you and doing tests.
▷ For instance, we can look in your eyes to see if it is having an effect on the
blood vessels at the back of the eye; we can do an ECG – an electrical tracing
of the heart – or an echocardiogram – a special scan of the heart – and see if it
is having an effect there; and we can do urine and blood tests to check kidney
function.
PATIENT: WHAT IS THE TREATMENT LIKELY TO CONSIST OF ?
DOCTOR: ▷ the first thing is for us to look at your lifestyle to see whether we can help you
make it more healthy to bring your blood pressure down.
▷ Examples of things that can help are ensuring you take regular exercise,
stopping smoking and looking at your diet.
▷ But it is likely that tablets will also be needed.
PATIENT: AM I ALWAYS GOING TO HAVE HIGH BLOOD PRESSURE?
DOCTOR: ▷ not everyone who is started on medication for blood pressure continues with
high blood pressure for the rest of their life.
▷ In some situations the changes to their lifestyle may mean that they do not
need to continue taking medication long term.
▷ The treatment is something that your doctor will want to review on a regular
basis.
PATIENT: WILL ONE TABLET CURE ME?
DOCTOR: ▷ it might do, but a significant number of patients actually require a combination
of tablets.
▷ We will start you off on one tablet and then review your blood pressure, and
only add in additional tablets if required.
PATIENT: WHAT IF I GET SIDE EFFECTS FROM THE PILLS?
DOCTOR: ▷ there are lots of different sorts of blood pressure pills, and we want to make
sure that we get one that suits you.
▷ If you do get side effects from the first one that we try, I’d like you to tell me so

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that we can try and find one that suits you better.
PATIENT: CAN I STILL TAKE THE ORAL CONTRACEPTIVE PILL?
DOCTOR: ▷ yes, as long as we can get your blood pressure under control.

CASE 7
LIFESTYLE MODIFICATION
ROLE: you are a junior doctor in a general medical outpatient clinic.

A 52-year old builder who has smoked 10–20 cigarettes per day for many years is admitted on a

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general medical take with 4 month’s history of exertional shortness of breath, which has got
significantly worse during the last few days.
He has no significant past medical history except for mild hypertension (150/95 mmHg), for which
he is reluctant to accept medication, and obesity (108 kg, BMI 36.5).
He has improved after treatment with oxygen, nebulised bronchodilators and antibiotics.
Spirometry on discharge confirms a moderate chronic obstructive pulmonary disease (COPD).
YOUR TASK: explain to this reluctant patient that he should stop smoking and lose weight.

KEY ISSUE TO EXPLORE


▷ Why is the patient reluctant to give up smoking?
▷ Has he ever made an attempt to give up smoking?
▷ If he has, then how difficult was it?
▷ For how long did he manage to refrain from smoking, and why did his attempt to quit fail?
▷ Has he tried to lose weight?
▷ If so, what lifestyle changes did he make in this respect and did he manage to lose any weight
(and why does he think that he was unsuccessful)?
KEY POINTS TO ESTABLISH
▷ Introduce yourself appropriately.
RELATED TO SMOKING
▷ Explain the patient’s spirometry result and the cause of his breathing difficulty.
▷ Highlight why inhalers alone are not an effective way of treating his shortness of breath in the
long term.
▷ Explain the benefits of quitting smoking, its effect on spirometry and the price he will have to
pay if he continues to smoke (eg he is likely to have gradually decreasing exercise capacity
and need repeated hospital admissions).
▷ Focus on how smoking affects his health personally (COPD and hypertension) rather than in a
general way.
▷ Balance negative information about harm and risks with positive information about the
benefits of smoking cessation.
▷ Demonstrate active listening skills.
▷ Encourage open and nonthreatening discussion on how he sees his smoking.
▷ Make sure he does not feel pressured and avoid being judgemental.
▷ Back off if he appears annoyed. Stay positive and friendly.
▷ Show understanding of his fears about quitting.
▷ Keep avenues open for any changes in his mind.
▷ Praise him for his past achievements, however small they may seem.
▷ Explore options available to him to support him in his decision to quit (nicotine replacement
therapy, bupropion and smoking cessation clinics).

RELATED TO OBESITY
▷ Explain the BMI value, its implication and how obesity contributes to his breathing problem.
▷ Show understanding regarding the difficulty that he might have experienced while trying to
lose weight.
▷ Suggest various strategies that may help him to lose weight(dietary change, physical
▷ activities, and drugs such as orlistat and sibutramine).
If something is difficult, like giving up smoking or losing weight, do not pretend to the patient
that it is or should be easy.

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APPROPRIATE RESPONSES TO LIKELY QUESTIONS
PATIENT: I’M NOT CONVINCED THAT MY BREATHING DIFFICULTY IS CAUSED BY THE CIGARETTES.
I HAVE SMOKED FOR 36 YEARS, SO WHY DID I BECOME SHORT OF BREATH ONLY 4
MONTHS AGO?
DOCTOR: ▷ changes related to smoking happen gradually over many years, and may not
cause any breathing problems until significant damage is done.
▷ Spirometry, the breathing test which you have had done, is the best way of
detecting changes in the lungs caused by cigarettes.
▷ One of the things measured – the amount that you can blow out in 1 second,
called forced expiratory volume in 1 second (FEV1) – tells us how narrow the
airways are.
▷ If this reading, the FEV1, goes down to less than 80% of what it should be for your
age and height, then this indicates chronic obstructive pulmonary disease.
▷ This is irreversible damage to the lung through smoking, and I’m afraid that that is
what you’vegot.
▷ It is not at all uncommon for smokers to first develop breathing difficulties in the
way that you have.
PATIENT: IF, AS YOU SAID, MY BREATHING PROBLEM IS CAUSED BY SMOKING, WHY WAS I NOT
SHORT OF BREATH EARLIER, ALL THE WAY ALONG, WHEN MY BREATHING FUNCTION
WAS GETTING WORSE?
DOCTOR: ▷ lots of things affect whether or not you feel breathlessness, such as your general
level of fitness, weight, muscle strength, heart function and tolerance of pain and
breathlessness.
▷ With the same level of problems in their airways, one patient with COPD may
complain of extreme breathlessness whereas another gets mild or even no
symptoms.
PATIENT: WELL, I’VE GOT TO DIE OF SOMETHING AND BESIDES, IT LOOKS AS IF IT IS TOO LATE
FOR ME TO GIVE UP SMOKING, ANYWAY.
AS YOU SAID, THE DAMAGE THROUGH SMOKING HAS BEEN
ALREADY DONE, SO WHAT’S THE POINT OF QUITTING AT THIS STAGE?
DOCTOR: ▷ it is true that damage due to smoking is irreversible, so if you give up you won’t
regain lost function.
▷ In fact your lung function will still continue to decline the same as everyone else’s,
but it will get worse at about the same rate as would be expected in someone who
didn’t smoke at all.
▷ However, if you keep on smoking it will get worse much faster.
▷ So, it is never too late to give up smoking.
PATIENT: I DID TRY ONCE TO GIVE UP SMOKING, BUT GAINED OVER A STONE IN WEIGHT, WHICH I
HAVE BEEN UNABLE TO LOSE SINCE THEN.
HOW AM I GOING TO GIVE UP SMOKING AND LOSE WEIGHT AT THE SAME TIME?
DOCTOR: ▷ I agree that it may not be easy, but I am sure that you can do it.
▷ You have at least two reasons to lose weight.
▷ Your excessive weight will certainly make your shortness of breath worse, and it
may well be the cause of your raised blood pressure.
▷ As your body mass index is well over 30, you are also at high risk of developing
other serious medical conditions, particularly diabetes and heart disease.
▷ Adietitian could help you to choose a diet that is best for you and you

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could also consider joining a weightloss class where you could get advice on both
diet and exercise, and work along with other people with the same problems to
improve things

CASE 8
POSSIBLE CANCER
ROLE: you are a junior doctor in a respiratory clinic.
This 48-year-old executive has had a CXR as part of his company’s health screening programme (he
has never had a CXR before).
It shows a pulmonary nodule in the right upper lobe.
He has been informed that he has a shadow in his lung.
YOUR TASK:
discuss with him the implications of his undiagnosed abnormality and address his fears that this
may be lung cancer. You are not expected to examine the patient.
KEY ISSUES TO EXPLORE
▷ What is the patient’s main worry?
▷ Is there any particular reason why the patient is worried?
▷ In routine clinical practice patients will often not mention key reasons for their concern, and in
PACES the briefing notes for the surrogate will commonly say ‘Do not mention this unless
specifically asked’.
▷ What further investigations are required?

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KEY POINTS TO ESTABLISH
▷ Introduce yourself to the patient and say why you have been asked to see him.
▷ Explain the proposed outline of your interview by telling him that you wish to go through the
history briefly to confirm the information that you have been given, that you would then like to
discuss the implications of the findings and finally address any fears or concerns that he may
have.
▷ Ask if the patient would like anyone else to be present during this discussion.
▷ Admit uncertainty: this might be something sinister, but it might not be.
▷ Emphasise that ‘something can always be done’, even if the diagnosis is serious.
▷ Always adopt a non-judgemental attitude, eg if the patient says he will continue to smoke 40
cigarettes a day despite being informed that there is a shadow in the lung.
Explain the medical benefits of changing behaviour but do not be judgemental, even if the
patient’s behaviour seems to have caused the illness.

APPROPRIATE RESPONSES TO LIKELY QUESTIONS

PATIENT: THIS WAS ONLY DISCOVERED AT A ROUTINE CHECK AND I FEEL FINE, SO SURELY
IT CAN’T BE SERIOUS?
DOCTOR: ▷ it’s obviously a good thing that you feel well, and I agree that the chances of
something serious would be much higher if you felt ill.
▷ But, I’m afraid I can’t guarantee that the shadow on the lung isn’t serious.
PATIENT: WHAT COULD THE SHADOW BE CAUSED BY?
DOCTOR: ▷ there are a range of possibilities: sometimes shadows on the lung can be
caused by an infection, either recent or a long time ago, sometimes they can
be due to conditions that cause inflammation in the lungs, and sometimes
they are due to growths of various sorts
PATIENT: WHAT ARE THE CHANCES THAT THIS IS CANCER?
DOCTOR: ▷ I can’t tell you at the moment.
▷ I’m not hiding anything, I simply don’t know.
▷ It could be due to infection or to a benign growth of some sort, but yes, I’m
afraid that cancer is a possibility, and we need to find out if that is the case
as soon as possible.
PATIENT: HOW ARE WE GOING TO FIND OUT WHAT IT IS?
DOCTOR: ▷ we need to do some more tests.

| P a g e 19
▷ In particular we need to organise a CT scan of your lungs and probably a
bronchoscopy, which means looking into the lungs with a special telescope,
as well.
▷ With one or other of these tests, depending exactly on where the shadow is,
we may need to perform a biopsy so that we can look at the tissue under a
microscope to see what the shadow is.
▷ We will also plan to do some more blood tests to check for evidence of
infection or inflammation.
PATIENT: WHAT WILL YOU DO WHEN YOU FIND OUT WHAT IT IS?
DOCTOR: ▷ that very much depends on what we find.
▷ If it’s an infection, then antibiotics may be needed
PATIENT: BUT IF IT’S CANCER, WILL YOU BE ABLE TO CURE IT?
DOCTOR: ▷ I honestly don’t know.
▷ There are several different sorts of lung cancer, and if it is one of those it
will also depend on how far it has spread.
▷ I don’t think we can really go into too much detail at the moment– because
we don’t know exactly what we’re dealing with here – but some cases of
lung cancer can be cured.

CASE 9
POTENTIALLY LIFETHREATENING ILLNESS

ROLE: you are the on-call medical junior doctor

Mrs Angela Warren is a 36-yearold single mother of two who has been brought to the Emergency
Department by ambulance.
She developed sudden-onset pleuritic chest pain and breathlessness at rest this evening.
On examination her pulse rate is 120 bpm regular and her respiratory rate is 24/minute, but
otherwise there are no abnormal findings.
Of her initial investigations the ECG shows sinus tachycardia, the CXR is clear and blood tests are
normal except for a raised D-dimer.
Arterial blood gases show a normal pH (7.44), normal PO2 (11.0 kPa) and reduced PCO2 (3.0 kPa).
The pain is easing, she reports feeling less short of breath and she wants to go home.
YOUR TASK:
to explain to Mrs Warren that pulmonary embolism is a significant possibility and that she should
start treatment and be investigated as an inpatient.
KEY ISSUES TO EXPLORE
▪ Explain the possibility of a potentially life-threatening problem.
▪ Find out why she is so keen to get home.
▪ In routine clinical practice patients will often not mention their reasons for wanting to leave
hospital unless specifically asked, and in PACES the briefing notes for the surrogate will
commonly indicate that they should do the same.

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KEY POINTS TO ESTABLISH
MAIN ETHICAL ISSUE
▪ The competent patient does have the right to refuse investigation and/or treatment.
▪ It is your responsibility to put her into such a position that she is able to make decisions about
her management from a well-informed standpoint.
▪ Is she competent?
▪ Does she understand the possible diagnosis and its potential implications?
▪ She needs to know that she is at significant risk of deterioration, and even death, from her
(presumed) pulmonary embolism.

THE COMPETENT PATIENT HAS A RIGHT TO ACCEPT OR REFUSE TREATMENT.

PRACTICAL ISSUE
▷ Are there childcare issues(for example)?
▷ If there are, then offer to make an effort to help in sorting them out.
▷ It is unfortunately not uncommon for some doctors to ‘wash their hands’ of patients seen to
be‘refusing treatment’, but usually a compromise position can be reached with good
negotiation and the examiners will be looking for your ability to make a workable plan in this
scenario.

Willingness to negotiate a reasonable compromise

▷ Negotiation may result in a treatment plan that is not necessarily ideal, but better than
nothing.
▷ For example, it may be agreed that the patient is given a dose of low-molecular-weight heparin
immediately, and that she returns in the morning for a ventilation–perfusion scan and review.

APPROPRIATE ANSWERS TO LIKELY QUESTIONS

PATIENT: I’M FEELING A BIT BETTER, SO THERE CAN’T BE ANYTHING SERIOUSLY WRONG.
DOCTOR: ▪ I’m obviously pleased that you’re feeling a bit better, but I’m afraid that I
can’t guarantee that there isn’t a serious problem here.
▪ One of the blood tests, the D-dimer, and one of the tests on the blood from
an artery indicate that there may be something serious going on.
PATIENT: SO WHAT DO YOU THINK THE DIAGNOSIS IS?
DOCTOR: ▪ it is possible that you have had a pulmonary embolus, which is a blood
clot in the blood supply to the lung.
PATIENT: HOW WILL YOU FIND OUT IF THAT IS WHAT HAPPENED?
DOCTOR: ▪ we’ll need to perform a scan that enables us to see the blood supply and
check if there are any blockages.
PATIENT: IS HAVING A PULMONARY EMBOLUS DANGEROUS?
DOCTOR: ▪ if this is a clot, then usually the body slowly absorbs it over the next week or
so.
▪ But the main worry is that either this clot may extend and get bigger, or that
more clots may spread to the lung.
▪ If this happens then it can be very serious indeed: it can mean that you can’t

| P a g e 21
get enough oxygen into your blood, that the heart is sometimes put under too
much strain and cannot pump properly, and in severe cases it may even stop
completely.
PATIENT: WHAT TREATMENT DO I NEED?
DOCTOR: ▪ to help prevent this clot getting worse, or more clots from forming, we need to
put you on some blood-thinning medicine.
▪ Whilst we are getting the scan to confirm the diagnosis this will be in the form
of an injection under the skin.
▪ If the scan confirms a clot, you will then be put on blood-thinning tablets for
the next 6 months.
PATIENT: CAN I GO HOME NOW?
DOCTOR: ▪ is there some special reason that you want to go home?
▪ Is there a problem with looking after the children or something like that,
something that we might be able to arrange help for?
PATIENT: NO, I JUST DON’T LIKE BEING IN HOSPITAL.
I WANT TO GO HOME.
DOCTOR: ▪ I’m afraid that I don’t think that’s a good idea.
▪ I think that there’s a high chance that you’ve got clots of blood in the lungs,
and from the tests we’ve done these seem to be affecting your heart and your
breathing.
▪ I think we should give you the treatment to thin the blood and get the scan
done in the morning.
PATIENT: I HEAR WHAT YOU SAY, BUT I’M GOING HOME.
CAN’T I HAVE THE INJECTION AND COME BACK FOR THE SCAN IN THE MORNING?
DOCTOR: ▪ OK, as long as you understand that this condition can sometimes be very
serious, or even life-threatening, and that is the reason I would strongly advise
you to stay in hospital for now.
▪ But if you really insist on going home, then I can arrange for you to have an
injection of the blood-thinning treatment now before you go.
▪ If you do get worse at home, please call an ambulance and come straight
back to hospital.
▪ I’ll make a note in your medical records to say that this is what I’ve advised.

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CASE 10
SUDDEN UNEXPLAINED DEATH
ROLE: you are the medical junior doctor working on a general medical ward.
A 56-year-old woman admitted with an exacerbation of chronic obstructive pulmonary disease
(COPD) 5 days ago has died suddenly.
When seen on the ward round in the morning she seemed to have been gradually improving, and
certainly better than she was on admission.
She had been on a prophylactic dose of low-molecular-weight heparin, but the most likely cause of
death was probably massive pulmonary embolism.
Her husband has been called into the hospital by the senior sister on the ward.
He knows that his wife has died, but does not know the circumstances.
YOUR TASK:
explain to the husband that his wife died suddenly, probably from a massive pulmonary embolism,
and that you will have to discuss the case with the coroner.
KEY ISSUES TO EXPLORE
▷ The original reason for the patient’s admission and its management.
▷ What is the husband’s understanding of the cause or causes of his wife’s death?
▷ Explain to the husband that his wife was on proper treatment for COPD and that her death was
too sudden to be due to that condition, so it is most likely that she died due to an underlying
pulmonary embolism.
▷ Explain that there is an increased risk of thromboembolism in acutely ill medical patients, and
that a prophylactic dose of low molecular- weight heparin can reduce this risk but not
eliminate it altogether.
KEY POINTS TO ESTABLISH
▷ The uncertainty regarding the cause of death, and that a definite cause of death can only be
established by a post-mortem.
▷ That you will not be able to issue a death certificate without discussion with the coroner or the
coroner’s officer, who may insist on a post-mortem examination.

NEVER SAY THAT SOMETHING IS CERTAIN IF IT IS NOT.

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APPROPRIATE RESPONSES TO LIKELY QUESTIONS

PATIENT’S IT HAS COME AS A BIG SHOCK.


HUSBAND: I NEVER KNEW THAT SHE WAS SO UNWELL.
DOCTOR: ▷ I would first of all like to say how sorry we all are here, especially as her death
was so sudden and unexpected.
▷ It was a shock to us all.
▷ As you know, she was admitted with exacerbation of her chronic bronchitis
and emphysema.
▷ She was on treatment for this, and when we saw her on the ward round this
morning she seemed to be improving.
PATIENT’S WHAT HAPPENED THEN?
HUSBAND:
DOCTOR: ▷ we don’t know for sure, but we think that she suffered from a massive clot on
the lung.
▷ This is the most likely thing to explain her sudden collapse and death.

PATIENT’S IF SHE HAD A CLOT, COULD IT HAVE BEEN PREVENTED?


HUSBAND:
DOCTOR: ▷ pulmonary embolism or clots in the lung are known to occur in people who are
confined to bed, and your wife had been in bed for much of the last week or so.
▷ These clots can be prevented by injections of blood-thinning agents, and we
had been giving your wife these injections since her admission.
PATIENT’S SO WHY DID SHE HAVE A CLOT IF YOU WERE GIVING HER INJECTIONS TO STOP
HUSBAND: THEM?
DOCTOR: ▷ I’m afraid that the injections aren’t 100% effective.
▷ Like all treatments they don’t always work: they cut down the chances of
having clots, but they don’t guarantee that you won’t.
PATIENT’S BUT YOU SAID THAT YOU ARE NOT ABSOLUTELY SURE THAT SHE HAS HAD A CLOT
HUSBAND: IN THE LUNGS.
DOCTOR: ▷ yes, that’s true.
▷ We think that a massive clot in the lungs is the most likely thing, but we can’t
prove it and it is possible that she had something else, like a sudden heart
attack
PATIENT’S SO WHAT HAPPENS NOW?
HUSBAND:
DOCTOR: ▷ because we are not absolutely sure why your wife died, I cannot issue a death
certificate.
▷ For this reason, and also because she died unexpectedly, I must speak to the
coroner’s office.
▷ It may be that they will decide that a post-mortem examination needs to be
done.
PATIENT’S CAN’T YOU JUST SIGN A DEATH CERTIFICATE?
HUSBAND:
DOCTOR: ▷ I’m afraid that I can’t.
▷ I can only sign a death certificate if I know the cause of death and, as we’ve
discussed, I’m not absolutely sure here.

| P a g e 24
▷ This is why I must speak to the coroner’s office.
PATIENT’S I’M NOT KEEN ON HER HAVING A POST-MORTEM.
HUSBAND:
DOCTOR: ▷ I understand what you’re saying, but I am not able to issue a death certificate
because I do not know the cause of death.
▷ I have to refer the matter to the coroner.
PATIENT’S WHAT WILL THE CORONER DO?
HUSBAND:
DOCTOR: ▷ I can’t say for certain.
▷ I will explain what happened: that your wife came into hospital because her
chest was bad, that she was on treatment and seemed to be getting better,
and then that she died suddenly and we think from a clot of blood on the
lungs.
▷ If the coroner is willing to accept that, then I will put it on the death certificate.
▷ However, if the coroner says that he wants a post-mortem to try and find out
exactly what happened, then that’s his decision and we have to accept it.

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CASE 11
INTUBATION FOR VENTILATION

ROLE: you are the medical junior doctor working on a general medical ward.

Mr Ian Jones, a 74-year-old man with chronic obstructive pulmonary disease, is admitted with an
acute hypercapnic exacerbation precipitated by a chest infection.
He has previously been confined to his home because of exertional dyspnoea, despite the use of
domiciliary oxygen and nebulised bronchodilators.
Conventional medical therapy is being administered and adjuvant non-invasive ventilation is being
set up for him.
He still appears mentally alert.
The question of whether it would be appropriate to intubate him for ventilation is discussed on the
ward round.
The view of the medical team is that there would be no guarantee of success, and the process may
be unpleasant for the patient.
Moreover, even if intubation and ventilation were to be successful and the patient to survive this
episode, he is likely to be left with even greater respiratory disability than he
had prior to this illness.
There is no doubt that whatever is done his medium- to long-term outlook is very poor indeed.
YOUR TASK:
to approach him with the issue of whether or not he would want to be intubated for ventilation in
case the current therapeutic measures are unsuccessful in resolving his
ventilatory failure.

KEY ISSUES TO EXPLORE


• What is the patient’s understanding of his medical condition and prognosis?
• What is the patient’s attitude to invasive procedures such as intubation and ventilation?
• What are the likely attitudes of his family members and carers?

KEY POINTS TO ESTABLISH


• Is the patient competent to make an informed decision about endotracheal intubation and
ventilation?
• Does the patient have a realistic understanding of the advantages and disadvantages of this
treatment?
• Can he give you an account of them?
• Has the patient discussed these issues with anyone else or written a ‘living will’?

PRIORITISING AUTONOMY’ MEANS ENABLING THE PATIENT TO DECIDE WHAT TREATMENT HE


OR SHE WANTS, THE DOCTOR’S DUTY BEING TO OUTLINE AVAILABLE EFFECTIVE TREATMENTS.

| P a g e 26
APPROPRIATE RESPONSES TO LIKELY QUESTIONS
PATIENT: HELLO DOCTOR.
DOCTOR: ▪ hello Mr Jones, I just thought I’d come and have a chat while the mask and
equipment to help you with your breathing is being set up.
PATIENT: BY ALL MEANS.
DOCTOR: ▪ how much do you know about the sort of treatment you are receiving?
PATIENT: NOT A LOT, REALLY.
DOCTOR: ▪ well, we are going to ask you to breathe through a mask that is connected
to a machine that will help you with your breathing.
▪ If you breathe normally then the flow of air coming from the machine will
help.
PATIENT: OK DOCTOR, I’LL DO MY BEST.
DOCTOR: ▪ good, but can we talk a bit further?
▪ As you know, your breathing is pretty bad just now, and while we are
hopeful that things will improve with this treatment we’re just starting, it
may be that they won’t.
▪ If that turns out to be the case, we have to consider carefully what we
should do.
▪ Is that something you’ve ever thought about or talked with anyone about?
PATIENT: WHAT DO YOU MEAN?
DOCTOR: ▪ some people with serious medical problems, such as your chest, have
thought about exactly what treatments they would want or not want if
things got really bad.
▪ Some people have talked with their family or friends about it, or have
written a ‘living will’. Is this something you’ve done?
PATIENT: NO, WHAT ARE THE TREATMENTS YOU ARE TALKING ABOUT?
Doctor: ▪ if things get worse, we need to think about whether it would be the right
thing to take you to the intensive care unit.
▪ There they could put you to sleep, place a tube into your throat and connect
you up to a breathing machine, called a ventilator, that will do all the
breathing for you.
▪ How do you feel about that?
PATIENT: WELL, DOCTOR, I’M NOT REALLY SURE.
WHAT ARE THE PROS AND CONS?
DOCTOR: ▪ the idea would be to help you with your breathing while we try to overcome
the infection in your chest, but the treatment has its own set of risks.
▪ This includes chest infections that can be very difficult to treat, and there is
a strong possibility that you may not be able to come off the breathing
machine easily.
▪ In that case – if you were going to need the breathing machine for a long
time – we would have to make a hole in your neck [show visually], pop a
tube down into your wind-pipe and use this to connect you to the breathing
machine.
PATIENT: IF I DID GO ONTO THE BREATHING MACHINE, WOULD I GET BETTER?

| P a g e 27
DOCTOR: ▪I’m afraid that this can’t be guaranteed.
▪Your chest is very bad and whatever we do it isn’t going to get completely
better.
▪ I’m afraid that it’s likely that every episode of infection such as this is going
to make things a bit worse, even if you do get over it.
PATIENT: WHAT’S THE RIGHT THING TO DO?
DOCTOR: ▪ this isn’t the sort of situation where there’s a ‘right’ and a ‘wrong’ thing to
do.
▪ Some people will decide that they want to try the ventilator if things get
really bad, but they have to recognise that this can be very difficult for them
and might not work out.
▪ Other people decide that they want to be kept comfortable if they get into
that sort of situation.
▪ Whatever decision is made, we will look after you as well as we can.

CASE 12
PATIENT REFUSING VENTILATION

ROLE:
you are the medical junior doctor on call and you are asked by the nurses to speak to the daughter of
a patient who was admitted on acute medical take a few nights ago.

| P a g e 28
Mrs Natalie Cooper, aged74 years, has presented with type II respiratory failure secondary to an
exacerbation of severe chronic obstructive pulmonary disease that normally limits her exercise
tolerance to approximately 50 metres at best.
She is well known to the respiratory team because of her recurrent hospital admissions, but on this
occasion she has failed to respond to maximal medical treatment that has included a trial of
non-invasive ventilation.
During previous admissions the question of escalation of treatment has been discussed with her,
and she has consistently said that she would not want to be intubated and ventilated in the event of
deterioration.
The respiratory team think that this is a reasonable decision for her to have made, that she is
competent to make it and this has been recorded in her notes.

YOUR TASK:
explain to the daughter that her mother does not want mechanical ventilation and that her views
must be respected.
KEY ISSUE TO EXPLORE
▪ What is the daughter’s understanding of her mother’s condition?
▪ Explain the details: a life-threatening flare-up, a poor response to medical therapy including a
trial of non-invasive ventilation, and the progressive character of her underlying lung disease
and its complications.
▪ What is the daughter’s understanding of her mother’s wishes?
▪ The impossibility of predicting the outcome of this situation accurately.
KEY POINTS TO ESTABLISH
▪ Demonstrate an understanding of the daughter’s wishes, in particular if she wants to do
everything to keep her mother alive.
▪ Ensure that the daughter understands that her mother’s decision against mechanical
ventilation in the future was her own, and was made on the basis of a full understanding of her
condition and the probable consequences of not proceeding to mechanical ventilation.
▪ Explain that patients have a legal right to decline specific treatment, including treatment that
is life prolonging.
▪ Demonstrate sympathy with the daughter’s difficulty in accepting her mother’s decision.
▪ Reassure her that every effort will be made to keep her mother comfortable in the event that
she deteriorates and is dying.

APPROPRIATE RESPONSES TO LIKELY QUESTIONS

DAUGHTER: AS YOU SAID, MY MOTHER IS VERY POORLY AND I FEEL THAT SHE IS TOO ILL
TO MAKE SUCH IMPORTANT DECISIONS AS THOSE CONCERNING
LIFE-AND-DEATH ISSUES.
DOCTOR: ▪ you are right, your mother is probably too ill now to make any valid
judgements.
▪ However, she has discussed this with the chest team before when she
was well.
▪ At that time she was fully competent to make decisions on what

| P a g e 29
treatment she would wish to receive in the future, and this has been
recorded in her notes.
DAUGHTER: EXACTLY WHAT HAS BEEN DISCUSSED WITH HER IN THE PAST?
DOCTOR: ▪ your mother was aware that she has a chronic lung condition, which is
progressing, and that her lung reserves are low.
▪ She knew that at some point she might end up in a ‘do-or-die’ situation,
because of a flare-up or deterioration, and the possible ways of treating
this, with their advantages and disadvantages, were discussed.
▪ She made a conscious decision that if such circumstances arose she did
not wish to be put on a life-support machine.
▪ She, along with any other patient who can understand the implications of
their decisions, has the legal right to decide what kind of medical
treatment to choose or refuse.
DAUGHTER: I STILL FEEL THAT I HAVE THE RIGHT TO OVERTURN MY MOTHER’S DECISION,
WHILE SHE IS SO POORLY AS NOT TO BE ABLE TO DECIDE WHAT IS BEST FOR
HER.
DOCTOR: ▪ I fully understand what you say, as you obviously would like your mother
to receive all available treatment so that she can live for as long as
possible.
▪ But your mother took the decision not to be put on a mechanical
breathing machine(a ventilator), and this has been recorded in her notes.
▪ She has not changed her decision since she’s been on the ward so we
therefore have to respect her wishes.
▪ I am afraid that no one has a legal right to accept or decline treatment on
her behalf and that includes the closest family, however distressing this
may be.
▪ I fully understand that it’s very difficult for you.
DAUGHTER: IF SHE DOESN’T GO ONTO A BREATHING MACHINE, THEN IS IT DEFINITE THAT
SHE WILL DIE?
DOCTOR: ▪ no, it’s not absolutely definite.
▪ At the moment she is very ill and we fear that she is going to die, but it’s
not 100% certain.
▪ Patients do sometimes come back from situations as bad as this, but we
don’t think that’s likely, although I’d be delighted to be wrong.
DAUGHTER: IF SHE DID GO ONTO A BREATHING MACHINE, THEN WOULD SHE LIVE?
DOCTOR: ▪ again, I’m afraid that’s not certain.
▪ The machine would help the breathing in the short term, but there can be
problems.
▪ It can sometimes be very difficult indeed to get someone off the machine
and this can lead to a variety of complications.
▪ So no, it’s not certain she’d live if she went onto the breathing machine.
DAUGHTER: I FIND IT VERY DIFFICULT TO ACCEPT MY MOTHER’S DECISION. SHE HAS NEVER
TOLD US THAT SHE WOULD NOT WANT TO BE PUT ON A LIFE-SUPPORT
MACHINE.
DOCTOR: ▪ I suspect that your mother was concerned that she might become
incapacitated and unable to make decisions on her own behalf.
▪ She has been on maximal medication for her chronic lung condition for
some time now, and I think that she felt tired of fighting for breath and,

| P a g e 30
more importantly, that the prospect of losing her independence was
unacceptable to her.
▪ She must have felt that enough was enough.
▪ It was very brave of her to make up-front planning: making a decision not
to pursue life-prolonging treatment is obviously not an easy one and she
probably wanted to protect her loved ones from the responsibility of
being involved.
▪ Our duty is to respect her values and wishes.
DAUGHTER: IT IS EASY FOR YOU TO SAY THIS – SHE IS NOT YOUR MOTHER.
DOCTOR: ▪ I honestly think that even if your mother could be pulled through this
flare-up, she might have a significantly worse quality of life.
▪ There is also a significant chance that she might end up on a ventilator
permanently in order to go on living, and she probably would not wish to
face this.
▪ This is not only my opinion, but also the view of other doctors who look
after her.
▪ I have to say that I support your mother’s decision and would also feel the
same if it were my own mother.
▪ At the same time I fully understand how difficult it is for you to accept
this, and I can assure you that the doctors and nurses will work together
to ensure that your mother does not suffer, and that she continues to
receive all the treatments needed to relieve her symptoms.

CASE 13

PERSUADING A PATIENT TO ACCEPT HIV TESTING


ROLE: you are a medical trainee working in a general medical outpatient clinic.

John Ward is a 21-year-old university student who has visited East Africa.
Lately, he has complained of increasing lethargy and difficulty concentrating, has lost one stone
(6.35 kg) in weight over the last 2 months and has developed swellings in the neck, armpit and
groin area.
At night-time his temperature has gone up to 39.7°C, when he would sweat profusely.
The warden of his hall of residence noticed that he was unwell and sent him home, telling him that
he should see his GP.
The family GP took a very detailed history covering all physical and social aspects of John’s life.
He examined him and confirmed generalised lymphadenopathy, also finding oropharyngeal
candidiasis, and organised blood tests that showed elevated immunoglobulins and haemoglobin
9.6 g/dL(normal range 12–16.5), platelets 87 × 109/L (normal range 150–400), neutrophils1.8 ×
109/L (normal range 2–7) and lymphocytes 0.02 × 109/L(normal range 1–3).
John was referred to the medical clinic where you discussed the differential diagnosis of

| P a g e 31
lymphoma and HIV.
You recommended an HIV test after a thorough explanation of the possibility of HIV and the
development of AIDS.
John refused to discuss this, saying that ‘he was worried about obtaining a mortgage in the future’.
He asked if he could have his immediate symptoms treated.
You gave him a prescription for high-dose fluconazole tablets and some paracetamol to bring his
temperature down, and gave him an appointment at clinic in seven days time, to which he has now
returned.
YOUR TASK: to convince the patient to allow you to test him for HIV.
KEY ISSUES TO EXPLORE
• The differential diagnosis.
• The patient’s understanding of and fears about HIV.
• Issues about insurance.
KEY POINTS TO ESTABLISH
• That best treatment cannot be provided without a definite diagnosis.
• Does he have recognised risk factors for HIV infection, or is there another explanation?
• Does he realise that there is effective treatment for HIV-positive people?
• That applications for life insurance require any significant illness to be disclosed.

SOME ANSWERS TO LIKELY QUESTIONS


PATIENT: CAN YOU NOT JUST TREAT ME FOR MY FEVERS AND ORAL THRUSH?
DOCTOR: ▪ I could, but this would be just treating the symptoms and not the
disease.
▪ If we do that, then whatever is causing the problem will simply get worse
and it’s very likely that you will develop other infections, more serious
than thrush, and these could make you very ill indeed.
PATIENT: BUT IF I’VE GOT HIV, YOU CAN’T TREAT IT, CAN YOU?
DOCTOR: ▪ no, that’s not true nowadays.
▪ It is right that in the early days of HIV there was no effective treatment,
but we now have combinations of drugs that can prevent or slow
progression of the disease, so it’s very worthwhile finding out whether or
not it’s the problem.
PATIENT: I USED TO HAVE A BOYFRIEND, BUT I HAVE NOT SEEN HIM FOR A LONG TIME.
WE FELL OUT OVER HIS NEW JOB, WHICH HE WAS DETERMINED TO TAKE.
WHAT SHOULD I DO?
DOCTOR: ▪ I think we need to establish the diagnosis first, and then – if you are HIV
positive – you need to think about informing him.
PATIENT: I HAVE HAD SOME CASUAL SEXUAL CONTACTS RECENTLY, WHAT SHOULD I DO
ABOUT THESE?
DOCTOR: ▪ again this depends on whether or not you are HIV positive, but if you are,
then there are a number of issues: your partners may already be infected,
and my advice would be that they should see someone appropriate to

| P a g e 32
discuss this.
▪ Also, you will need to adopt the appropriate sexual precautions to
prevent infectivity because, as you may be aware, having unprotected sex
knowing that you could be HIV positive is a legal issue
PATIENT: I READ ON THE INTERNET THAT HODGKIN’S LYMPHOMA CAUSES THESE
SYMPTOMS. WHY COULD IT NOT BE LYMPHOMA?
DOCTOR: ▪ you are right, it might be.
▪ But because, as you recognise, you are at risk of HIV, it makes sense to
check this possibility rather than get a lymph node biopsy in the first
place.
PATIENT: I ALSO READ THAT LYMPHOMA OCCURS IN HIV PATIENTS.
COULD IT STILL BE LYMPHOMA?
DOCTOR: ▪ yes, that’s possible.
▪ However, this sort of generalised gland swelling is more likely to be a
feature of the HIV reaction at an early phase.
PATIENT: WHY ARE YOU SO SURE THIS IS HIV?
DOCTOR: ▪ your lymphocyte count and blood picture is very suggestive of HIV
infection in a homosexual person.
PATIENT: DON’T THE DRUGS YOU GIVE FOR HIV MAKE THESE BLOOD PROBLEMS WORSE?
DOCTOR: ▪ occasionally drugs will suppress your bone marrow, but with all drugs it’s
a matter of balancing benefits and risks.
▪ At present the HIV – if that’s what it is – is damaging your blood, so it is
important to control the infection to minimise this damage.
PATIENT: IF I HAVE AN HIV TEST, THEN I WON’T BE ABLE TO GET INSURANCE, WILL I?
DOCTOR: ▪ you are right that this can cause difficulties, but I’m afraid that the fact of
the matter is that you’ve almost certainly got a serious medical condition
– HIV or lymphoma I think.
▪ Any substantial insurance that you take out will require you to declare if
you have any serious medical problems, so I don’t think that the issue
can really be avoided by simply not having the test.

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CASE 14

TALKING TO A DISTRESSED RELATIVE


ROLE: you are the junior doctor on call at the weekend covering a general medical ward.

Mr Sutton is a 64-year-old man who has been admitted for investigation of anaemia, back pain and
weight loss.
He becomes confused and disruptive, is found to be hypercalcaemic (serum calcium 3.21 mmol/L,
normal range 2.1–2.6) and the medical team have started appropriate treatment for this
(intravenous saline and intravenous bisphosphonate).
Mrs Sutton has come to visit her husband, is distressed about his deterioration and feels that his
medical team is missing something.
Her mother had myeloma and a back pain similar to her husband.
She tells the nurses that she wants to speak to a doctor, and they call you.
Before you see Mrs Sutton you review the notes and see that Mr Sutton has had a CXR and barium
meal, which are normal; that his haematinics are normal; that a spinal X-ray showed a lytic lesion,
but protein electrophoresis was normal.
Although you cannot find any record of a test for Bence Jones protein being performed, you recall
that 15% of myeloma cases are Bence Jones positive but without a serum monoclonal band.
YOUR TASK: to reassure Mrs Sutton that her husband is receiving appropriate treatment.
KEY ISSUES TO ESTABLISH
• That you are sympathetic to Mrs Sutton’s worries.
• That investigations into Mr Sutton’s condition are proceeding, but a diagnosis is still not clear.
• That hypercalcaemia is the probable cause of his confusion, and that treatment for this has been
started.
• That a definitive management plan cannot be made until the diagnosis is established.
• That you will make sure that Mr Sutton’s regular medical team knows about his wife’s
concerns.

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KEY POINTS TO EXPLORE
• What are Mrs Sutton’s main concerns?

APPROPRIATE RESPONSES TO LIKELY QUESTIONS


▪ the nurses told me that you’d like to talk about your husband, Mr Sutton DOCTOR:
YES, THAT’S RIGHT, THANKS FOR COMING. PATIENT’S
I’M VERY WORRIED ABOUT HIM: HE’S CONFUSED, AND HE WASN’T WHEN I SAW WIFE:
HIM YESTERDAY.
▪ yes, I agree that he’s confused. DOCTOR:
▪ That’s almost certainly because he has high calcium in his blood.
▪ He’s been put on treatment with the drip for that, but it often takes a while
before things improve.
SHOULD HE HAVE A BRAIN SCAN? PATIENT’S
WIFE:
▪ it is often difficult and unsafe to attempt to scan patients who are acutely DOCTOR:
confused, and I don’t think that this is necessary at the moment.
▪ I think we know the cause of your husband’s confusion – the high level of
calcium in the blood – and I expect that things will improve as this comes
down with the treatment.
▪ But if it doesn’t, then we can review the situation.
WHY IS HIS CALCIUM HIGH THEN? PATIENT’S
WIFE:
▪ we’re not sure at the moment. DOCTOR:
▪ There are a number of conditions that can do this.
▪ Have the regular doctors on the ward had a chance to talk to you about the
possibilities?
YES, THEY’VE TALKED A BIT. PATIENT’S
THEY’VE SAID IT COULD BE MYELOMA, OR PERHAPS SOME SORT OF CANCER. WIFE:
MY MOTHER HAD MYELOMA.
HAS MY HUSBAND GOT MYELOMA OR NOT DOCTOR?
▪ I don’t know for certain, but it is possible. DOCTOR:
BUT ONE OF THE DOCTORS ON THE WARD TOLD ME THAT THE . . . PATIENT’S
WHAT WAS IT? FUNNY WORD . . . WIFE:
IMMUNOGLOBULINS WERE NORMAL AND THAT IT WASN’T MYELOMA.
▪ I’ve looked in the notes and it’s true that the immunoglobulins in his blood DOCTOR:
are normal, and they are usually abnormal when someone’s got myeloma.
▪ But this isn’t always the case and I think we need to see the result of a

| P a g e 35
special urine test before we can say that we are certain.
WHY DID THE REGULAR TEAM NOT DO THIS URINE TEST? PATIENT’S
WIFE:
▪ I don’t know, but I will discuss it with them. DOCTOR:
I FEEL LET DOWN BY HIS REGULAR DOCTORS. PATIENT’S
I AM NOT HAPPY! WIFE:
▪ I can understand your concerns and frustrations. DOCTOR:
▪ You need to speak to the consultant in charge of your husband’s case and
take these concerns up with them.
▪ I will let the nurse in charge of the ward know that you want to do this and
she should be able to tell you the best way of making contact.
HAVE YOU SEEN MORE CASES OF MYELOMA THAN MY HUSBAND’S DOCTORS? PATIENT’S
WIFE:
▪ I think that this is very unlikely, but discussions about difficult cases occur all DOCTOR:
the time between teams of doctors and this is how problems are solved.
WILL HE END UP IN A WHEELCHAIR LIKE MY MOTHER? PATIENT’S
WIFE:
▪ it’s far too early to be able to say anything like this. DOCTOR:
▪ We need to be sure of the diagnosis before we can say what might, or might
not, happen in the future.
MYELOMA CANNOT BE CURED, CAN IT? PATIENT’S
WIFE:
▪ I think that’s right. DOCTOR:
▪ It’s certainly not a condition that we can guarantee to cure, but there are
treatments that can help substantially.
▪ Some patients with myeloma can have many years of good-quality life, even
if the disease does eventually come back.

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CASE 15
EXPLAINING A MEDICAL ERROR
ROLE: you are the medical junior doctor working over the weekend to cover a gastroenterology
ward.

Mr Alistair Bates, a 66-year-old man with well-known alcoholassociated cirrhosis, portal


hypertension and angina, is admitted with haematemesis.
He is not severely shocked, and after receiving 500 mL of plasma expander and 500 mL of 0.9%
saline intravenously his pulse and BP are satisfactory, but because his haemoglobin is 9.1 g/dL
(normal range 12–16.5) a decision is made to give him a blood transfusion.
Within half an hour of commencing the transfusion he develops chest pain and becomes
profoundly hypotensive.
There is concern that he might be bleeding and that this might be precipitating ischaemic cardiac
pain, so his transfusion is speeded up and the haematology laboratory is phoned to ask for more
blood.
A urinary catheter is inserted and the urine passed is red.
By this time Mr Bates is unresponsive to pain and arrangements are made for his urgent transfer to
the intensive care unit (ICU).
The fact that Mr Bates had collapsed following transfusion and that he had haematuria clearly
suggests a transfusion reaction.
In discussion with the biomedical scientist in the haematology laboratory it rapidly becomes
apparent that a Mr Alan Bateman had also been admitted through the Emergency Department at
the same time as Mr Alistair Bates– your patient – and that blood had also been cross-matched for
this patient.
A repeat sampling from Mr Bates is immediately organised: this reveals that he is group O Rhesus
(D) positive with a strong Coombs’ test, which is at variance with his first sample that was group A
Rhesus (D) positive.
The blood for transfusion had been issued on the basis of the first sample.
The other patient with a similar name is also re-bled:
Mr Bateman’s first sample grouped O Rhesus (D) positive, but repeat testing reveals he is group A
Rhesus (D) positive.
Clearly there had been a transposition of samples during the admission of the two men in the
Emergency Department leading to a haemolytic transfusion reaction for Mr Alistair Bates.
Group O blood (correct) is now issued for him as he is transferred to the ICU for further
management.
You discuss the case with the on-call gastroenterology SpR, who knows Mr Bates well.
He tells you that Mr Bates has had several admissions over the last6 months with gastrointestinal
bleeding (always from varices) and/or ascites, and that his prognosis from the point of view of his
liver is extremely poor.
He does not think that attempts should be made to resuscitate him in the event of cardiac arrest.
YOUR TASK: you are asked by the senior nurse on the ward to talk to Mr Bates’s wife, and explain
what has happened and why he is to be transferred to the ITU.

| P a g e 37
KEY ISSUES TO EXPLORE
▪ The wife’s understanding of her husband’s medical condition and prognosis.
▪ The blood transfusion error that has led to a serious transfusion reaction.
▪ The possibility of a fatal outcome.
▪ Does Mr Bates’s wife know her husband’s views about attempts to resuscitate him in the event
of cardiac arrest?
▪ And what are her views?
KEY POINTS TO ESTABLISH
▪ Mr Bates has a very poor prognosis because of his liver disease.
▪ A transfusion reaction has occurred, with immediately life-threatening consequences.
▪ It is not clear who is to blame for the transfusion error at this point, but the issue will not be
ignored.
▪ That an attempt to resuscitate Mr Bates in the event of him having a cardiac arrest is
extremely unlikely to be successful.
APPROPRIATE RESPONSES TO LIKELY QUESTIONS
WHY IS MY HUSBAND UNCONSCIOUS? PATIENT’S
WIFE:
▪ he has had a serious bleed from his stomach, and I’m afraid that he has DOCTOR:
reacted to the blood transfusion.
▪ His blood pressure is very low, which is why his brain is not working properly
at the moment.
WHY HAS HE REACTED TO THE BLOOD TRANSFUSION? PATIENT’S
I THOUGHT BLOOD WAS LIFE-SAVING! AND HE’S HAD IT BEFORE WITHOUT ANY WIFE:
PROBLEMS.
▪ I’m afraid that there seems to have been a mix-up with the blood samples DOCTOR:
and the blood he received has resulted in him becoming seriously ill with a
transfusion reaction.
WHAT IS A TRANSFUSION REACTION? PATIENT’S
WIFE:
▪ the sort of reaction that he’s got happens when the body recognises that the DOCTOR:
transfused blood is the wrong sort.
▪ It destroys the transfused cells, which release substances that can damage
the body.
HE WAS GIVEN THE WRONG SORT OF BLOOD? PATIENT’S
WHO IS RESPONSIBLE FOR THIS MISTAKE? WIFE:

▪ I’m not hiding anything when I say that I’m not exactly sure how this mistake DOCTOR:
has happened, but there seems to have been a mix-up between two patients’
blood samples.
▪ We are investigating this, and when we have found out what happened we
will let you know.
▪ We will not sweep things under the carpet.
▪ The consultant in charge will speak to you but he is not here at the moment.
▪ However, I think the ICU staff may be able to help with your concerns until
the consultant in charge can speak to you.

| P a g e 38
CAN I SPEAK TO THE DOCTOR IN CHARGE PLEASE? PATIENT’S
WIFE:
▪ I am sure that the consultant in charge will speak to you, but she is not here DOCTOR:
at the moment.
▪ The most important thing to do now is to get Mr Bates to the ICU, but before
we finish I will take your contact details and pass them on to the consultant.
WILL HE DIE? PATIENT’S
WIFE:
▪ I’m afraid that he might. DOCTOR:
▪ His liver disease is very bad indeed and, as I’ve said, the transfusion reaction
is a very serious thing in itself.
▪ Have any of the gastroenterologists, the doctors who look after him regularly,
had a chance to talk to you about his liver?
A BIT. THEY’VE TOLD ME IT’S PRETTY BAD. PATIENT’S
WIFE:
▪ yes, that’s right. DOCTOR:
▪ As you know he’s been in and out of hospital several times recently,
sometimes with bleeding and sometimes with swelling due to fluid in the
abdomen.
▪ All of which means that the liver is in very bad shape.
▪ So, if we put the transfusion problem to one side for the moment, even
without this I’m sorry to say that his outlook isn’t good at all.
▪ I spoke to one of the team of doctors that know him a few minutes ago, and
he said he thought he was unlikely to live for more than a few months.
WHAT WILL HAPPEN IF YOU CAN’T GET HIS BLOOD PRESSURE UP? PATIENT’S
WIFE:
▪ we are trying to get his blood pressure up, but if we are unsuccessful then DOCTOR:
I’m afraid that his heart could stop.
▪ Did your husband ever talk with you about what he would want done in this
situation?
NO, HE DIDN’T. PATIENT’S
WHAT DO YOU THINK? WIFE:
▪ that’s a difficult question. DOCTOR:
▪ If there’s a problem that can be made better, then it’s clearly right to try and
do everything that you can to keep someone alive – to give them the ‘kiss of
life’ and that sort of thing.
▪ But when there are problems that cannot be improved – like your husband’s
liver – then it’s very unlikely indeed that things like that would work; and I
think, and the doctor from the team that knows him also thinks, that we
should make sure that he’s comfortable.

CASE 16

BREAKING BAD NEWS

| P a g e 39
ROLE: you are a junior doctor working on a haematology ward.

A 24-year-old shop assistant presents with a 6-week history of increasing tiredness.


She has also had several episodes of cystitis and more recently has noticed that she has started to
bruise more easily.
Her FBC is as follows: haemoglobin 7.8 g/dL (normal range 12–16.5), white blood cell count 5.1 ×
109/L (normal range 4–11), neutrophils 0.2 × 109/L (normal range 2–7) and platelets 18 ×109/L
(normal range 150–400).
Bone-marrow aspirate confirms the diagnosis of acute myeloid leukaemia and cytogenetic analysis
reveals a normal female karyotype in all metaphases examined.
The case is discussed at the multidisciplinary team meeting and it is agreed that with current
combination chemotherapy (which should last about 6 months) the patient has an approximately
90% chance of going into remission, with a 5% risk of death during treatment, a 5% risk of refractory
disease, a 50% chance of relapse in the next 5 years and a 40% survival at 5 years.
In the case of refractory or relapsed disease, two out of three patients respond to alternative
treatment and 5-year survival is about 30%.
Failure to respond to treatment in instances of relapsed or refractory disease implies incurable
leukaemia.
Without treatment this woman would die in a matter of weeks.
YOUR TASK:
you must explain the diagnosis, treatment options and prognosis to this woman and her husband.
KEY ISSUES TO EXPLORE
▪ Find out what the patient believes is going on.
▪ Describe the outcome of the disease if it is not treated.
▪ Describe the treatment options(including the option of no treatment) and the prognosis for
each of the treatment approaches– in this case her condition is potentially curable.
▪ Be honest about the side effects and risks of treatment, but emphasise that there is a whole
system in place to provide her with 24-hour support both when in hospital and when at home.
KEY POINTS TO ESTABLISH
▪ The diagnosis is not in doubt: the patient has leukaemia, which is a cancer of the blood.
▪ You must use the word ‘cancer’: it is the only word that you are sure everyone understands in
the same way.
▪ Do not use words like ‘tumour’, ‘growth’, ‘neoplasm’ and ‘lesion’ when talking about cancerous
diseases because these can be ambiguous and confusing.
▪ That you and your colleagues will do everything possible to cure the leukaemia, although a
cure cannot be guaranteed.
▪ Also that you will support the patient and her family throughout the process of treatment and
recovery.
▪ That if there is no curative option, every effort will be made to control the disease for as long
as possible and that any symptoms the illness might cause will be dealt with actively.
▪ Reinforce that there are extremely effective treatments for the control of all symptoms and
that you are determined that at no point during the illness should your patient suffer.
▪ That you will always tell the patient the truth, whether it is good news or bad.
▪ Encourage the patient to ask questions and reaffirm your intention to be open and honest with
your answers.
▪ It is uncommon today for relatives to ask for the patient to be kept ignorant of the facts of the
illness.
▪ If the patient is to give informed consent to further treatment, then she has to be fully aware of

| P a g e 40
the diagnosis.
▪ Chemotherapy is potentially lethal, and informed consent must be obtained.
▪ Gentle persuasion and logical reasoning help most relatives see that this is correct.
Occasionally, where it is clear that the patient is going to die rapidly, it may be more
appropriate to keep them comfortable and spare them the details.
▪ However, if the patient demands information you must be honest with them: relatives have no
legal right to withhold information in the UK.

APPROPRIATE RESPONSES TO LIKELY QUESTIONS


IS IT CANCER DOCTOR? PATIENT/HU
SBAND:
▪ yes, leukaemia is a form of cancer. DOCTOR:
▪ It is cancer of the blood.
ARE YOU SURE THAT IT’S LEUKAEMIA? PATIENT/HU
COULD IT BE ANYTHING ELSE? SBAND:
▪ no, I’m afraid that it couldn’t. DOCTOR:
▪ I’d like to tell you something different, but I wouldn’t be being honest if I did.
▪ You’ve got leukaemia.
CAN IT BE CURED? PATIENT/HU
SBAND:
▪ this form of leukaemia is curable in some people but not in others. DOCTOR:
▪ We can make the leukaemia go away in nine out of ten people like you with
our current treatments– we call that remission – and after treatment the

| P a g e 41
disease never comes back in about half of these patients.
▪ However, in others it does, which we call relapse.
▪ In a few people the leukaemia doesn’t respond well to treatment at all, but we
will do everything we can to make your leukaemia go away and stay away.
WHAT DOES THE TREATMENT INVOLVE? PATIENT/HU
SBAND:
▪ it involves having injections of drugs and taking tablets, which we call DOCTOR:
chemotherapy.
DOESN’T CHEMOTHERAPY MAKE YOU SICK AND ILL? PATIENT/HU
SBAND:
▪ you’re right that there can be side effects such as sickness. DOCTOR:
▪ We will explain to you what these might be, and also tell you about the
treatments that can prevent them or make them less severe.
▪ We won’t give you any treatments without explaining to you what they’re
supposed to do, and what effects they might have on you.
WHAT IF THE TREATMENT DOESN’T WORK? PATIENT/HU
SBAND:
▪ remember that most people like you do respond to treatment. DOCTOR:
▪ However, if the first course of treatment doesn’t work, we would have to
change tack and use a different combination of drugs to try to make the
leukaemia go away.
▪ Many people who do not respond to the first set of drugs do respond to this
different combination.
▪ That said, if you didn’t respond to the second course of treatment then I think
we’d have to accept that no drugs available would be able to cure your
leukaemia, and our emphasis would switch to dealing with the symptoms
that it caused.
IF I GO INTO REMISSION WITH THE TREATMENT BUT THE DISEASE COMES BACK, PATIENT/HU
WHAT THEN? SBAND:
▪ unlike many other cancers, if people like you relapse with leukaemia there DOCTOR:
are still treatments available that can cure the disease.
▪ It is harder to cure the disease second time around, but it is still possible.
▪ We could talk more about treatment options at that stage if it were to
happen.
IF I AM CURED, WILL I BE ABLE TO HAVE CHILDREN? PATIENT/HU
AND WOULD ANY CHILDREN I HAVE IN THE FUTURE BE AFFECTED BY THE SBAND:
CHEMOTHERAPY?
▪ many women treated with this type of chemotherapy do go on to have DOCTOR:
children.
▪ Fertility may be reduced after chemotherapy, and if you did have problems in
getting pregnant in the future then there are a number of investigations we
would want to do at that stage to see if we could identify and treat the cause.
▪ While you are on chemotherapy you must not get pregnant, as the
chemotherapy would harm the developing child.
▪ Also, you must not assume the chemotherapy will stop you getting pregnant,
so you must use contraception such as condoms.
▪ If you think you might be pregnant at any stage during treatment, then you
should let us know immediately.

| P a g e 42
▪ Most doctors recommend waiting 2 years after finishing treatment before
trying to get pregnant.
▪ But after you have recovered from chemotherapy and it has left your system,
then we don’t think there is an increased risk of cancer or of an abnormality
in children whose parents have previously received treatment for cancer.
DO WE HAVE TO DECIDE ABOUT THIS RIGHT NOW? PATIENT/HU
SBAND:
▪ no, we don’t have to make a decision this minute. DOCTOR:
▪ But we can’t wait too long, because without treatment the disease will get
worse and I’m sorry to say that it will probably kill you within a few weeks.
▪ I’d suggest that you think things over, and I’ll come back later on today or
tomorrow morning to discuss your decision.
▪ I’ll also ask one of the specialist nurses to come and talk to you: they’ll be
able to give you more information about how the treatments are given and
the support that is available for you and your family.

CASE 17
CARDIAC ARREST

ROLE: you are a junior doctor on the cardiac arrest team.


A 75-year-old man, Mr Tony Foster, has suffered a cardiac arrest on the ward.
He was admitted 3 days previously with an inferior myocardial infarction.
Unfortunately resuscitation attempts have been futile.
YOUR TASK:
the nurses have asked you to speak to Mr Foster’s wife and explain that her husband has died.
KEY ISSUES TO EXPLORE
▪ It is vital to find out what the wife knows already: she may have just arrived spontaneously
without any warning of what has been going on; alternatively the nursing staff may have
phoned to explain that her husband is very poorly and that she should come to the hospital
immediately.
KEY POINTS TO ESTABLISH
▪ Get the setting right:
o ideally you need a quiet room adjacent to the ward where you are not going to be
interrupted.
o Ensure that you have left your bleep (and mobile phone) with a colleague.
o Take one of the senior ward nurses as support (both for the family and yourself).
o The room should ideally have a supply of tissues and a telephone.
▪ Introductions:
o ensure you have introduced yourself and what you do; also introduce any nursing or
other hospital staff who are with you.
o Ensure you have the correct family and know precisely who you are speaking to: many
of us have had the misfortune to break news to a daughter thinking it was the patient’s

| P a g e 43
wife, or vice versa.
o Be explicit about what has happened: that the patient’s heart stopped suddenly; that the
cardiac arrest team was called; that attempts were made to resuscitate the patient; but
that these were unsuccessful and that unfortunately Mr Foster has died.
▪ It is important to listen:
o give his wife time to understand and to ask questions.
APPROPRIATE RESPONSES TO LIKELY QUESTIONS
WIFE: WHY HAS THIS HAPPENED?
DOCTOR: ▪ as a result of the heart attack, your husband’s heart had become weaker.
▪ Just after a heart attack the heart is irritable and the normal pattern of the
heartbeat can be disrupted, which can lead it to stop pumping blood properly
to the brain and other organs.
WIFE: WHAT DID YOU DO?
DOCTOR: ▪ as soon as the team on the ward recognised that his heart had stopped, they
called the cardiac arrest team.
▪ He was given oxygen and heart massage – pressing up and down on the
chest to keep the blood moving in the body – and he was defibrillated which
is a special electric shock to try to get the heart beating steadily again.
▪ He was also given various drugs to try to help, but I’m afraid that these didn’t
work.
▪ The damage to his heart was obviously too great.
WIFE: WOULD HE HAVE FELT ANY PAIN?
DOCTOR: ▪ no: patients become unconscious very quickly as soon as this happens.
▪ During the resuscitation attempts he showed no signs of life and will not
have felt any pain.
WIFE: BUT ON THE TELEVISION RESUSCITATION IS USUALLY SUCCESSFUL.
DOCTOR: ▪ yes, I know, but in real life the heartbeat only returns in about 30% of people
who have a cardiac arrest in hospital, and only around half of those survive
to reach hospital discharge.
▪ I agree that things go well on the television more often, but unfortunately the
figures are much lower in real life.

Further comments Which deaths require reporting to the coroner (procurator fiscal
in Scotland)?
1. Cause of death is unknown.
2. Deceased was not seen by the certifying doctor either after death or within the 14 days before
death.
3. Death was violent, unnatural or suspicious.
4. Death may be due to an accident(whenever that occurred).
5. Death may be due to self-neglect or neglect by others.
6. Death may be due to an industrial disease or related to the person’s employment.
7. Death may be due to an abortion.
8. Death occurred during an operation or before recovery from the effects of anaesthetic.
9. Suicide.
10. Death occurred during or shortly after detention in police or prison custody.
Who should be notified following a cardiac arrest?
• The coroner may be required to be notified (see above).

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• The patient’s GP.
• The consultant responsible for the management of the patient should be notified as soon as
possible.
Who fills in the death certificate?
• Part 1 should be completed by one of the medical team caring for the patient. It should include the
date of death and details as to the presumed cause. It has sections detailing whether information is
available (or may become available later) from a postmortem
and whether the coroner has been informed.
• Part 2 is completed by a medical practitioner with at least 5 years of experience.

Following the Shipman enquiry, the person completing part 2 will contact not only the person
completing part 1 but also one of the nursing staff or another medical practitioner involved in the
case to ensure there were no suspicious circumstances.

CASE 18
STROKE
ROLE: you are a junior medical doctor on-call for the wards.

An 80-year-old man, Mr Anand Patel, has been admitted to hospital with a dense left hemispheric
stroke resulting in aphasia and a right hemiparesis.
He has a background history of prostatic carcinoma, left ventricular failure, atrial fibrillation and
chronic obstructive pulmonary disease.
His Glasgow Coma Scale score has fallen to 7 (E2, M4, V1), which is presumed to be due
to an extension of his stroke.
The consultant has reviewed the patient and feels that intensive care unit (ICU) care is
inappropriate and that the patient should not be resuscitated in the event of cardiopulmonary
arrest.
YOUR TASK: you are asked to explain to the family what has happened and why it would
be inappropriate to attempt resuscitation in the event of cardiopulmonary arrest.

KEY ISSUES TO EXPLORE


▪ What preparations should you make before speaking to the family?
▪ Obtain as much information as possible about the patient’s comorbidities and functional level
before his stroke: in PACES scrutinise the scenario very carefully for details; in routine clinical
practice look through the notes and speak to any staff present who may be able to give you
useful information.
▪ This is essential, not only to inform appropriate decision-making, but also in discussing the
issue with the family.
▪ They are much more likely to accept advice from a doctor who clearly knows the patient, Mr
Patel, rather than one who seems to regard him as ‘just another old man who’s had a big
stroke’.
▪ The scenario states that ICU care is not appropriate, but if that is so then what care is to be
given?
▪ If the patient were to develop a chest infection, are you are going to try a course of antibiotics
or is only comfort care indicated?
▪ These issues may be spelled out in a PACES scenario, but in routine clinical practice it is very
important to establish and agree amongst the medical and nursing team exactly what
treatments will and will not be given before embarking on discussions with a patient’s

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relatives.
▪ What do the family know already and what are their expectations?
▪ They may have expected Mr Patel to make a full recovery with supportive care.
KEY POINTS TO ESTABLISH
▪ Get the setting right: ideally you need a quiet room adjacent to the ward where you are not
going to be interrupted. Ensure that you have left your bleep (and mobile phone) with a
colleague.
▪ Take one of the senior ward nurses as support (both for the family and yourself). The room
should ideally have a supply of tissues and a telephone.
▪ Introductions: ensure you have introduced yourself and what you do; introduce any nursing or
other hospital staff who are with you.
▪ Ensure you have the correct family and know precisely who you are speaking to.
▪ Be explicit about what has happened: the patient has had a severe stroke that has resulted in
paralysis and loss of speech, and despite supportive measures his condition has deteriorated
and he is now semi-conscious.
▪ Be explicit about your management plan: you are going to ensure that he is comfortable, with
enough analgesia (if required) and fluids to ensure that he will not be distressed. The priority
is to maintain his comfort and dignity.
▪ Be explicit about the limits of care that will be given: that increasing the level of care is felt
▪ to be futile, and that ventilation or cardiopulmonary resuscitation would not alter the
outcome(families are often very relieved that their loved one will not be put through
distressing ‘treatments’ for no effect).
▪ Listen: give the family time to understand and to ask questions.
APPROPRIATE RESPONSES TO LIKELY QUESTIONS

RELATIVE: WHY HAS THIS HAPPENED?


DOCTOR: ▪ as a result of the stroke, he has very severe weakness of the right side of his
body and he has lost his speech.
▪ After a stroke as big as this the brain sometimes becomes progressively more
▪ swollen, which makes things worse, and the patient becomes more deeply
unconscious
RELATIVE: IS HE GOING TO GET BETTER?
DOCTOR: ▪ I’m sorry to have to say this, but I don’t think he is.
▪ He’s had a very big stroke and things seem to be getting worse.
▪ I’d be delighted to be wrong, but I don’t think he’s going to recover.
▪ I’m afraid that I think he’s going to die.
RELATIVE: IS HE IN ANY PAIN?
DOCTOR: ▪ no, I don’t think he is.
▪ I think he is too deeply unconscious to be aware of what’s happening or to be
in any pain.
▪ Our priority is to make sure that he is comfortable, and if we thought he was in
pain or was distressed, we would give him painkillers to prevent him from
being in any pain or discomfort.
RELATIVE: IF HE GETS WORSE, ARE YOU JUST GOING TO LET HIM DIE?
DOCTOR: ▪ the most important thing is that we make sure that he’s not in any pain or
distress.
▪ You are right that sometimes doing cardiac massage – CPR – and putting
people onto breathing machines can be helpful.

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▪ However, doing this is only kind and sensible if you have a condition that you
can reverse with treatment and in this case I’m afraid that the effects of the
stroke are not going to be reversible.
▪ Ventilation and CPR would not have any effect on his underlying condition.
▪ We will ensure that he is comfortable and not in any pain.

CASE 19
CONGESTIVE CARDIAC FAILURE
ROLE: you are a junior doctor working as evening cover on a general medical ward.
Mr Harold Wilson is 89 years old.
He had a stroke 5 years ago and is a diabetic on insulin.
He lives at home with his son, but has been house-bound since his stroke.
He was admitted 5 days ago with congestive cardiac failure.
Medical therapy has been instituted, including oxygen, diuretics, fluids and vasodilators.
There has been no response to treatment.
He has become increasingly short of breath
and is hypoxic despite oxygen.
He has not passed urine for4 hours.
His Glasgow Coma Scale score is currently 8.
He was reviewed by the consultant on the ward round who decided that he should be managed
conservatively and not resuscitated in the event of cardiac arrest.
His son was involved in the decision.
It is now 9 p.m. and Mr Wilson’s daughter has arrived: she feels that her father should be on the
intensive care unit (ICU).

YOUR TASK:
to explain to the daughter that transferring her father to the ICU would not be appropriate.

KEY ISSUES TO EXPLORE


▪ What does the daughter believe is likely to happen to her father?
▪ Why does she want him transferred to the ICU?
KEY POINTS TO ESTABLISH
▪ What does she know about her father’s condition and his previous state of health? She does
not live with him and may not be aware of these things.
▪ Explain what treatment has been given: he has been treated actively but has deteriorated
despite this.
▪ Be explicit about the prognosis: her father is dying and there is no treatment that will prevent
this. Futile treatments (such as resuscitation or transfer to ICU) will not be given.
▪ Explain the management plan: her father will be given treatments to alleviate his symptoms
and to ensure that he is comfortable and dignified (some people may be worried that a ‘Do not
resuscitate’ order means that no treatment will be given).

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APPROPRIATE RESPONSES TO LIKELY QUESTIONS

DAUGHTER: WHY ISN’T HE ON THE INTENSIVE CARE UNIT?


DOCTOR: ▪ I’m sorry to have to tell you that your father is dying.
▪ He has been given treatment for his heart with oxygen, diuretics – drugs to get
fluid out of the body – and other drugs to help the heart beat more strongly,
but despite all of these the situation is deteriorating.
▪ Your father’s heart, lungs, kidneys and brain are all failing.
▪ There is no treatment that will reverse this, on the ICU or anywhere else;
nothing that will alter the final outcome.
DAUGHTER: IS THERE NOTHING MORE YOU CAN DO FOR HIM?
DOCTOR: ▪ we can try to make his breathing easier for him, we can make sure that he is
comfortable and dignified, and we will ensure that he is not in any pain.
DAUGHTER: YOU ARE ONLY SAYING THIS BECAUSE THAT’S WHAT MY BROTHER THINKS.
DOCTOR: ▪ no, that’s not true.
▪ We have spoken about things with your brother, and he does agree with our
plan for treatment.
▪ But decisions about treatment are made us, by the medical team, and not by
your brother or anyone else.
▪ We have made what we think is the right plan.
DAUGHTER: CAN I SPEAK TO SOMEONE MORE SENIOR ABOUT THIS?
DOCTOR: ▪ yes, I can arrange that.
▪ The consultant saw your father earlier today on the ward round.
▪ She is aware of your father’s condition, and the plan that I have outlined to you
is the one that she made.
▪ However, she is not in the hospital at the moment.
▪ If you would like to speak to someone right away, then I can find out if the
on-call registrar is available to answer any questions you may have that I
cannot answer, or if one of the doctors on the ICU could speak to you, but I’m
sure that they will tell you what I’ve already said. I’m very sorry.
▪ I’d like to be able to say something different, but your father is dying and we
must make sure he’s comfortable.

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CASE 20
LUMBAR BACK PAIN

ROLE: you are a junior doctor on the medical assessment unit.


You have taken a history and examined a 40-year-old man Mr Chris Pitman, who called
999 with severe lumbar back pain.
He is usually fit and well but has a 2-day history of pain
radiating down his left leg.,
There are no red flags in the history or on examination. Examination confirms a diagnosis of
mechanical back pain. You have prescribed appropriate analgesia. On review, his pain has settled
and you want to discharge him to the care of his GP. He is insistent that he
needs X-rays prior to discharge.
YOUR TASK: to explain to the patient that no further investigation is needed at this stage and that
he can be discharged back to his GPfor follow-up with referral to physiotherapy if required.
KEY POINTS TO EXPLORE
• What is the patient’s main worry?
• Why does he want further investigation?

KEY POINTS TO ESTABLISH


☒ The history and examination have given reassuring results: the pain is not sinister; he does not
have cancer of the spine (or any similar problem).
☒ Further tests are not indicated at this stage.
☒ There are simple strategies for coping with the pain.
☒ What to do if the pain fails to settle.

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APPROPRIATE RESPONSES TO LIKELY QUESTIONS
CAN YOU GUARANTEE THIS PAIN WON’T COME BACK? PATIENT:
▪ no, I’m afraid that unfortunately I can’t guarantee that. DOCTOR:
▪ The prognosis for mechanical back pain is good, with 90% of sufferers
recovering by 6 weeks, but recurrence is common
HOW DO YOU KNOW I DON’T PATIENT:
HAVE ANYTHING SERIOUSLY WRONG WITH ME WITHOUT AN X-RAY?
▪ I’m afraid that an X-ray will not be helpful here. DOCTOR:
▪ As I’ve said, I don’t think that there is a sinister problem: I don’t think that you
have cancer of the spine or anything like that.
▪ But even if you did, then it’s extremely unlikely that a simple X-ray would
show anything.
▪ You’d need other special scans.
SO SHOULDN’T I HAVE THE SPECIAL SCANS THEN? PATIENT:
▪ no, I don’t think so. DOCTOR:
▪ The chances of them showing anything would be extremely small and they
are not without risks: some of these scans would expose you to radiation.
▪ However, if the pain continues beyond 6 weeks then the matter should be
reconsidered.
▪ It is important that you arrange to see your GP when you get home, so that
he or she can review your symptoms and see if anything further needs to be
done at that time
IS THERE NOTHING YOU CAN DO FOR ME? PATIENT:
▪ yes, there is. DOCTOR:
▪ I can give you some strong painkillers, some antiinflammatories and some
tablets to help muscle spasm.
▪ All of these can help and it is advisable for you to stay as active as possible.
▪ Even simple exercises can help.
▪ Your family doctor could organise a referral to a physiotherapist if things
don’t settle down quickly

CASE 21
COLLAPSE DURING A RESTAURANT MEAL
ROLE: you are a junior doctor working on a general medical ward.

You have admitted a 19-year-old female student following a severe anaphylactic reaction to

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peanuts
Following emergency treatment she is well.
She has no significant past medical history and lives in a university flat with two fellow students,
one female and one male.

YOUR TASK: to explain to the patient the diagnosis of nut allergy as the cause of her anaphylaxis,
and avoidance measures and the use of self injectable adrenaline/epinephrine (eg EpiPen).
There is no specialist allergy service in your hospital, but one of the pharmacists would be able to
show the patient how to use EpiPen and you would be able to make an outpatient referral to the
regional allergy service.

KEY ISSUES TO EXPLORE

▪ It will obviously be appropriate to ask the patient if she has any particular concerns and to
address these, but the most important issue that must be tackled is to find out what she
understands about her anaphylactic reaction.
▪ Understanding is important if she is to feel confident about minimising future risk.
▪ Lifestyle issues will be important.
▪ She will need to know how to minimise the risk of ingesting ‘hidden’ sources of peanut if
eating out.
▪ She will need to read food labels if buying preprepared food.
▪ Does she have a partner, flatmates or family? They could be important allies in avoiding
peanuts and may be able to assist in an emergency, if given the appropriate information.
KEY POINTS TO ESTABLISH
▪ After an appropriate introduction, let the patient know that the purpose of your interview is to
discuss what happened so that the chance of it happening in future is minimised.
▪ Say that you will also discuss simple but effective treatment that she can give herself in case
of emergency.
▪ You must try to give her confidence in her ability to manage the situation.
Explain how to avoid future reactions
▪ Emphasise that she should continue to live a normal life, but that she must take appropriate
precautions.
▪ Discuss potentially difficult or risky situations: parties, restaurants and choosing peanut-free
food when shopping.
▪ Allow her time to express her concerns.

Discuss self-management of anaphylaxis

▪ Discuss the need to carry two self-injectable epinephrine devices at all times, the recognition
of anaphylaxis and measures which should be taken if it happens again.
▪ Be aware that she may be afraid of using injectable epinephrine and encourage her to discuss
this.
▪ Encourage her to discuss her peanut allergy with her friends, who may be trained in the use of
the epinephrine if appropriate, but you should ensure that she gains the confidence to
self-inject in an emergency: her friends will not always be with her.

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APPROPRIATE RESPONSES TO LIKELY QUESTIONS
WHY DID THIS HAPPEN? I’VE EATEN PEANUTS LOTS OF TIMES BEFORE. PATIENT:
▪ that’s a good question, and I’m afraid that I don’t have a good answer. DOCTOR:
▪ All I can say is that this often happens: for some reason we don’t know,
people can become allergic to peanuts, and to other things, and their body
starts to react in this dangerous way if they are exposed to them.
IS IT JUST PEANUTS I’M ALLERGIC TO? PATIENT:
▪ that’s another good question and at the moment I can’t be sure. DOCTOR:
▪ Sometimes people who react to peanuts also react to other nuts, so my
advice for now is that it’s very important that you avoid all nuts.
▪ But I will, with your agreement, refer you to the regional allergy service as an
outpatient.
▪ They will do various tests to find out whether it’s just peanuts that you’re
allergic to, or other nuts as well.
I COULDN’T POSSIBLY INJECT MYSELF. PATIENT:
HOW CAN I? I’M SCARED OF NEEDLES.
▪ it’s natural to feel that way at first, but you can overcome your fear. DOCTOR:
▪ You will feel safer knowing that you know what to do in an emergency.
▪ One of the pharmacists in the hospital can show you how to use a device
that does all the work for you: you don’t actually see the needle and you can
practice using a ‘trainer’ pen, which doesn’t actually inject you.
▪ We could also show your flatmates how to use it too, if you wanted that and
they were willing to learn.
HOW WILL I KNOW WHEN TO USE THE EPINEPHRINE? PATIENT:
▪ the epinephrine is only for severe reactions like the one you had today. DOCTOR:
▪ If you think you may be having an allergic reaction, you should take
epinephrine if you feel any throat tightness, wheezing or faintness.
I’LL BE TOO FRIGHTENED TO EAT OUT IN A RESTAURANT: WHAT IF THE PATIENT:
SAME THING HAPPENED AGAIN?
▪ I can understand why you are worried about that, but you can minimise the DOCTOR:
chances by taking simple measures.
▪ Most restaurants are aware of the difficulties faced by people with allergies:
some have allergy information on the menus.
▪ However, you should always ask the waiter to specifically check with the
cook in the kitchen if what you’re thinking of ordering contains any nuts at
all.
WHAT ABOUT TRAVELLING ABROAD? SHOULD I CANCEL MY HOLIDAY? PATIENT:
▪ there is no need to cancel your holiday, but be cautious about unfamiliar DOCTOR:
foods that may contain nuts and always check in restaurants, as I’ve said
before.
▪ Make sure that you carry your epinephrine with you and, to avoid difficulties
on the plane and at customs, it would be wise to carry a doctor’s letter
explaining what it is and why you need it.
▪ I can write one of these for you.
WHAT IF THE EPINEPHRINE DOESN’T WORK? PATIENT:
▪ in any situation where you need to use the epinephrine, an ambulance should DOCTOR:
also be called.

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▪ The aim of the epinephrine is to give time for the ambulance to get to you.
▪ The epinephrine will work, but if the effect is insufficient or if your symptoms
start to come back, you should use your second epinephrine syringe.
▪ By that time medical help is likely to be there.

CASE 22
PERCUTANEOUS ENDOSCOPIC GASTROSTOMY (PEG)
ROLE: you are a junior doctor working on a medical ward.
Miss Fiona Davies is the daughter of one of your patients.
She is concerned about the current condition of her father, Mr Harry Davies, a 72-year-old man with a
history of hypertension and mild short-term memory problems who was admitted 2 weeks ago with
a stroke that has left him with a marked left-sided weakness and poor swallowing.
Over the past week there have been no signs of improvement in his swallowing when assessed by
the speech and language therapists.
Plans for his long-term care are in progress and early indications are that he will require full care in a
nursing home setting.
He has been receiving nutrition via a nasogastric tube, but this has been intermittent as he has not
tolerated it well and the tube has become dislodged on several occasions.

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Plans for his feeding have been discussed and the multidisciplinary team have considered that a
percutaneous endoscopic gastrostomy (PEG) would be appropriate.
The medical team think that Mr Davies is able to consent to the procedure.
Miss Davies has come to the ward by appointment to discuss long-term feeding issues.
YOUR TASK:
to explain to Miss Davies what options there are for feeding her father and the recommendation that
he has a PEG.
Key issues to explore
▪ Begin by establishing what the daughter’s main concerns are.
▪ Things that she might want to discuss include different options for maintaining hydration and
feeding, her father’s capacity to understand and consent to an intervention such as a PEG, and
long-term plans for care in the event of his condition deteriorating.
Key points to establish
▪ That you will listen to any of the daughter’s concerns, but that providing artificial hydration and
nutrition is a medical intervention and the decision about whether to do so is a medical one,
informed by the multidisciplinary team.
▪ That the view of the medical team is that her father has the capacity to make a decision about
his feeding.
▪ That any decision made will be reviewed if there is any change in her father’s condition.

APPROPRIATE RESPONSES TO LIKELY QUESTIONS


DAUGHTER: I DON’T THINK HE’D WANT TO BE MESSED ABOUT.
WHY CAN’T YOU JUST KEEP LETTING HIM TRY TO EAT AND DRINK?
DOCTOR: ▪ this is something that we have considered.
▪ We always prefer a patient to drink and eat normally if they can, but I’m afraid
that the stroke has damaged the nerves that control his swallowing.
▪ This means that when he tries to eat or drink he coughs and splutters, and
some of the food or drink goes down the wrong way and is in danger of
landing up in the lungs.
▪ If this happens he will get pneumonia, from which he’d be unlikely to recover.
DAUGHTER: BUT A PEG TUBE INTO THE STOMACH SOUNDS HORRIBLE.
ISN’T THERE ANYTHING ELSE THAT WOULD BE BETTER?
DOCTOR: ▪ I understand what you’re saying.
▪ A PEG tube does sound rather alarming, but it sounds worse than it is.
▪ We’ve already tried feeding him with a tube through the nose into the stomach
– a nasogastric tube – and he found that very irritating and kept dislodging it:
many people do.
▪ A PEG tube obviously doesn’t go through the nose, but straight through the

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abdominal wall and into the stomach, so patients find it much less irritating.
DAUGHTER: HOW CAN YOU BE SURE THAT HE UNDERSTANDS WHAT HAVING A PEG TUBE
MEANS?
DOCTOR: ▪ I agree that it can be difficult to know exactly what a patient understands
sometimes.
▪ However, we have talked to your father about the reasons for recommending
that he has a PEG on several occasions, and we think that he understands the
issues: he knows that he needs to have food and drink, he knows that he can’t
eat and drink normally, and he know that the tube through the nose is
uncomfortable and keeps falling out.
▪ We’ve explained to him how a PEG tube is put in, and the problems that can
sometimes arise.
DAUGHTER: SO HOW IS A PEG TUBE PUT IN?
DOCTOR: ▪ a PEG is inserted in the endoscopy department using a special telescope that
is passed through the mouth into the stomach.
▪ The patient is given a sedative injection if they need one, and local
anaesthetic is used in the throat and stomach wall.
▪ When the telescope is in the stomach its light can be seen through the skin.
▪ A small needle and guidewire are then put through the skin into the stomach
from the
▪ outside, which the telescope can catch and which is then used to pull the PEG
tube into position .
DAUGHTER: WILL HE NEED THIS PEG FOR THE REST OF HIS LIFE?
DOCTOR: ▪ I don’t know, but it’s possible that he will.
▪ Some patients with swallowing difficulties caused by a stroke can improve as
time goes on.
▪ Sometimes they improve to the point of not needing the PEG any more, in
which case it can be removed very simply by pulling it out.
DAUGHTER: WHAT ARE THE RISKS OF PUTTING IN A PEG?
DOCTOR: ▪ in most cases the business of putting in a PEG is very straightforward, but
you are right in thinking that this isn’t always the case.
▪ The risks are related to having the telescope inserted into the stomach and to
the procedure itself: in a very few cases it isn’t possible to put in a PEG; some
patients experience bleeding from the stomach afterwards, but this is usually
very minor and settles on its own; and sometimes the PEG tube falls out of
the stomach into the stomach cavity which can cause irritation.
▪ But 18 or 19 out of 20 people have a PEG put in without any problems.

DAUGHTER: WILL HE BE ABLE TO DO THINGS IN THE DAY IF HE IS ATTACHED TO HIS PEG FOR
FEEDING?
DOCTOR: ▪ yes, we try to do all the feeding overnight so that the day is freed up for other
things such as physiotherapy.
DAUGHTER: WILL THE PEG BE OBVIOUS?
DOCTOR: ▪ not when it is not being used.
▪ When your father is not attached to the feeding bag and tube, the PEG tube
lies close to the skin and is not usually visible under clothes.

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DAUGHTER: WHAT WOULD HAPPEN IF WE CHOSE NOT TO PUT IN A PEG?
DOCTOR: ▪ if we cannot give him adequate nourishment and hydration, he will deteriorate
and would find activities such as physiotherapy more difficult.
▪ We think that other methods of trying to give him food and drink will be less
effective and have more problems than a PEG.

FURTHER DISCUSSION
Any form of artificial feeding is a therapeutic intervention and informed consent from the patient or carers with
legal authority must be sought.

The question of artificial nutrition in a patient in a persistent vegetative state was considered by the
High Court in 1993, and four principles were established:

▪ the best interests of the patient is to be the guiding principle;


▪ artificial nutrition is considered a medical intervention;
▪ withholding and withdrawing artificial nutrition are equivalent acts;
▪ it is not unlawful to withhold or withdraw artificial nutrition.

Anorexia nervosa is considered a psychiatric condition and a patient may be detained and treated (eg
artificially fed) under the terms of the Mental Health Act.

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CASE 23
FEVER, HYPOTENSION AND CONFUSION

ROLE: you are a junior doctor working on a medical admissions unit.

You have admitted a 20-year-old female university student who presents with a 12-hour history of
fever, chills and generalised aches and pains.
On arrival she is extremely ill: confused, breathless, tachycardic and hypotensive (80/50 mmHg).
You suspect that she has toxic shock syndrome or septicaemia.
Initial resuscitation is underway and arrangements are being made for her transfer to the intensive
care unit.
The patient’s mother has been phoned by the warden from the university hall of residence
where her daughter lives.
She has driven from her home town 80 miles away in a state of distress and has arrived on the
medical admissions unit.
YOUR TASK: to explain the situation to the patient’s mother.
KEY ISSUES TO EXPLORE
▪ The daughter is clearly very unwell with a life-threatening illness.
▪ The mother will undoubtedly want an explanation of the possible causes of the illness and
your proposed investigation and management plan, but it will be important to find out if she
has other concerns, eg about the possibility of spread of infection.
KEY POINTS TO ESTABLISH
• Likely diagnosis is toxic shock syndrome/septic shock.
• A clear plan for investigation and management is in place.
• Prognosis must be guarded as she is likely to develop multisystem disease.
• Risk to others is very unlikely unless she has meningococcal septicaemia, where prophylaxis would
be offered to close personal contacts.

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APPROPRIATE RESPONSES TO LIKELY QUESTIONS

HOW DID THIS HAPPEN? MOTHER:


▪ at the moment we don’t know why this has happened. DOCTOR:
▪ It looks as though it is the result of an extremely serious infection and we are
organising tests to try and find out the cause of the problem.
▪ However, we have already started treatment because she is too ill for us to
wait for all the results to come back.
WHY WASN’T SHE TREATED EARLIER? MOTHER:
▪ from what we know, she was perfectly well until about12 hours ago. DOCTOR:
▪ This is a condition that can occur without warning in a previously healthy
person, and can develop extremely rapidly.
IS SHE GOING TO DIE? MOTHER:
▪ I’m not hiding anything when I say that I don’t know. DOCTOR:
▪ I’m afraid that your daughter is seriously ill, and there is a chance that she may
die from her illness.
▪ We are treating the infection with antibiotics and helping to support her vital
organs – giving fluids into the veins and giving oxygen; if she needs help with
breathing we will put her on a breathing machine, a ventilator, and if the
kidneys need help we will use a kidney machine, a haemofilter.
▪ We will know more when we see how she responds to treatment over the next
few hours.
COULD SHE STILL DIE, EVEN AFTER RECEIVING ANTIBIOTICS? MOTHER:
▪ yes, I’m afraid that’s still possible. DOCTOR:
▪ Many of the serious complications of this condition are due to the effects of
bacterial toxins on vital organs, and killing bacteria will not destroy all the
toxins immediately.
▪ Much of the tissue damage has already occurred and cannot be prevented by
antibiotics at this stage.
DOES ANYONE ELSE NEED TO TAKE ANTIBIOTICS ? MOTHER:
▪ no, unless the tests show that she has one special form of infection, with a DOCTOR:
bug called a meningococcus, the risk to others is extremely small and
antibiotics are not necessary for anyone else.

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CASE 24
A SWOLLEN RED FOOT
ROLE: you are a junior doctor working on a general medical ward.

A 54-year-old patient of Indian origin is under your care.


He has been admitted with cellulitis around a penetrating diabetic foot ulcer on his right heel.
Deep wound swabs have grown meticillin-resistant Staphylococcus aureus (MRSA).
He is currently being kept in a side room; staff are wearing aprons and gloves when they see him;
he is being treated with intravenous vancomycin; and he is awaiting further investigation to rule out
underlying osteomyelitis.
If he does have osteomyelitis, it is likely he will require a belowknee amputation.
The patient asks you to speak to his wife, who speaks reasonable English.
YOUR TASK:
to explain the diagnosis of MRSA and its implications to the patient’s wife.
KEY ISSUES TO EXPLORE
As always you will start off by finding out what the patient’s wife knows already, in particular:
• how much she knows about the problem with her husband’s foot and the possible consequences of
the ulcer;
• her understanding of MRSA.
KEY POINTS TO ESTABLISH
• The diagnosis is known and the patient is on the correct treatment.
• Further investigations to exclude complications are pending.
• The possible best- and worse-case outcomes (such as the possible need for amputation).
• The nature and implications of MRSA infection.

APPROPRIATE RESPONSES TO LIKELY QUESTIONS

WHEN CAN MY HUSBAND COME HOME? WE HAVE A FAMILY WEDDING NEXT WIFE:
WEEK.
▪ I’m afraid that I don’t know. DOCTOR:
▪ Your husband has a serious infection in his foot, which we must treat
properly.
▪ If we don’t, it could get very bad indeed.
▪ The infection could spread throughout his body.
BUT HE HAS TO GO TO THE WEDDING. WIFE:
▪ I hear what you say. DOCTOR:
▪ If it’s at all possible we will try to make sure that he’s able to go, even if only
for a few hours or half a day.
▪ But I’m not hiding anything when I say that I can’t promise: if he’s not well
enough, then it would be very unwise for him to go.
THE NURSES ON THE WARD TELL ME HE’S GOT MRSA. WHAT’S THAT? WIFE:
▪ it’s the name of the bacteria, the bug, that’s in his wound. DOCTOR:
▪ It’s a common sort of bug – Staphylococcus aureus, that’s what the SA
stands for– to cause wound infections, but I’m afraid that the one he’s got
is resistant to some of the standard antibiotics: the M stands for meticillin,
that’s one of the antibiotics, and the R stands for resistant.
▪ This is why we have to keep him in the side room and wear aprons and
gloves when we see him – to try and stop it being spread to other patients.

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WHERE DID HE CATCH THE MRSA? WIFE:
▪ I cannot say for sure. DOCTOR:
▪ It’s likely that he became colonised with the bug, the MRSA, during a
previous hospital visit, but there are strains of MRSA in the community as
well.
▪ People can carry the staphylococcal bacteria, including MRSA, on their skin
or in their throat or nose without having any symptoms.
▪ The infection is only serious if it invades the body tissues or complicates
surgery.
IF HE’S GOT MRSA, THEN WILL OTHER PEOPLE AT HOME HAVE IT AS WELL? WIFE:
▪ I don’t know. DOCTOR:
▪ It is possible that other members of the family are also carrying MRSA, but
it is unlikely to be a problem for them unless they have open wounds that
become infected.
▪ If anyone at home has a possible infection that is worrying them, then they
should arrange to see their GP.
ARE THE ANTIBIOTICS GOING TO CURE THE PROBLEM? WIFE:
▪ I’m not sure. DOCTOR:
▪ If the infection is only in the skin and soft tissues, then they should be able
to.
▪ But if the bone is infected, and we’re organising X-rays and scans to check
for this, then I’m afraid that they might not.
IF THE ANTIBIOTICS AREN’T GOING TO CURE THINGS, THEN WHAT HAPPENS? WIFE:
▪ at the moment, we’re hoping that the antibiotics will deal with things. DOCTOR:
▪ But if it doesn’t look as though they’re going to, then we would plan to
discuss the situation with our surgical colleagues.
▪ Sometimes it is necessary to operate to remove dead tissue and
sometimes it is even necessary to amputate the foot.
▪ I’m not saying that we will definitely need to do so in your husband’s case –
as I said, we’re hoping the antibiotics will cure the problem – but
sometimes amputation is the only way to get rid of the infection.

CASE 25
STILL FEVERISH AFTER 6 WEEKS
ROLE: you are a junior doctor working on a general medical ward.

A 49 year-old male teacher has been admitted for investigation of a 6-week history of malaise and
fever.
He has been in hospital for 4 days and a diagnosis has not been made.
A wide range of tests have been normal or negative, including a urine dipstick, FBC, electrolytes,
renal and bone function tests, serum immunoglobulins, autoimmune/ vasculitic screen and CXR.
Cultures of urine and blood have produced no growth after 2 days, but longer cultures are awaited.
Liver blood tests show slight elevation of alanine aminotransferase; inflammatory markers show
markedly elevated C-reactive protein.

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The results of other tests, eg viral serology, are awaited.
Other tests, eg echocardiogram and CT scans of the chest/abdomen/pelvis, are planned.
The patient is not acutely very ill, but he is frustrated and angry about the lack of progress and has
been shouting at the nurses.
He wants to be started on treatment.
The nurse in charge of the ward asks you to speak to him.
YOUR TASK: to explain the situation to the patient; in particular that it is necessary to establish a
diagnosis before treatment can be given.

KEY ISSUES TO EXPLORE


▪ The patient will almost certainly be concerned about the fact that he is unwell and the doctors
have not been able to work out why.
▪ But does he have any other concerns?
▪ Is he worried about anything in particular?
▪ It is unlikely that the patient’s frustration and anger will be relieved unless such issues are
explored and dealt with.
KEY POINTS TO ESTABLISH
▪ The complexity of differential diagnosis.
▪ Reassurance that the investigations are progressing in a logical fashion.
▪ Reassurance that as soon as definitive results are known they will be discussed with the
patient and specific therapy commenced.
▪ That problems can be incurred by premature treatment, specifically the difficulty of further
investigation should there be a failure to respond to initial treatment.
▪ Explanation that empiric therapy would be instituted should patient deteriorate.

APPROPRIATE RESPONSES TO LIKELY QUESTIONS

WHY IS ALL THIS TAKING SO LONG? PATIENT:


▪ I’m sorry it’s taking a long time. DOCTOR:
▪ I can understand why you’re frustrated, but it’s not obvious what the problem
is.
▪ You’ve had a range of tests – blood tests, urine tests and an X-ray of the
chest – and they haven’t given us the answer.
▪ There’s clearly something going on.
▪ One of the tests shows there’s a high level of inflammation in the blood and
another that the liver isn’t working completely normally, but we don’t yet know
what the cause of the problem is.
THE FEVER MAKES ME FEEL VERY UNWELL. PATIENT:
▪ yes, the fever will make you feel unwell. DOCTOR:
▪ We can give you a fan and medication to help that: paracetamol is very good.
▪ But the fever is not dangerous in itself: it is a sign that there’s something

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going on in your body that we need to get to the bottom of.
WHY CAN’T YOU JUST GIVE ME SOME TREATMENT? PATIENT:
▪ because we don’t know what’s wrong. DOCTOR:
▪ There are a number of possible diagnoses that all require different
treatments, and it is possible that we could make things worse if we gave a
‘best guess’ treatment that was actually wrong.
▪ This might mask further progression of your illness or interfere with further
investigation, making it more difficult or impossible to get the right diagnosis
in the end.
IF I WAS DESPERATELY ILL, YOU’D GIVE ME SOMETHING WOULDN’T YOU? PATIENT:
▪ yes, if that was the case we would make the best guess that we could and DOCTOR:
start you on treatment straight away.
▪ But as I said, this would have the risk of making it more difficult to get the
right diagnosis and it wouldn’t be the right thing to do at the moment.
COULD I HAVE CANCER? PATIENT:
▪ I’m not hiding anything when I say I don’t know, but it is possible. DOCTOR:
▪ Some cancers can cause fever and some of the tests we are planning are
designed to check this out.

CASE 26
CHRONIC FATIGUE
ROLE: you are a junior doctor working in a general medical outpatient clinic.

A 29-year-old man has been referred to the general medical outpatient clinic because of severe
fatigue, which he has had for several months.
He dates the onset to a viral illness he had last winter and feels he has an ongoing infection to
explain his persistent symptoms.
He does not have any symptoms to suggest that depression is the primary process.
Following his first clinic attendance a standard range of tests are performed:
FBC, inflammatory markers, electrolytes, glucose, renal/liver/ bone function tests, autoimmune/
vasculitic screen, thyroid function tests, serology for Epstein–Barr virus and cytomegalovirus, CXR
and a short Synacthen test.
All are normal or negative.
He now returns for a second clinic appointment.
At the meeting with the consultant before the clinic it is agreed that the diagnosis is chronic fatigue
syndrome, that no further investigations are required, that he should be encouraged to take gentle
daily exercise, gradually building up over time, and that referral for cognitive behavioural therapy
could be considered (although this is not likely to be readily or rapidly available).
YOUR TASK:
to explain the diagnosis and treatment of chronic fatigue syndrome to the patient.

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KEY ISSUES TO EXPLORE
▪ The patient is likely to have very clear-cut ideas about the cause of his problems, which need
to be explored before the discussion can move on.
▪ Why is he convinced that an ongoing infection is responsible?
KEY POINTS TO ESTABLISH
▪ You can find no serious progressive disease.
▪ This does not mean that you do not believe the patient’s symptoms.
▪ Chronic fatigue syndrome is real.
▪ There is no specific drug therapy but there are treatment options, including graded exercise
and cognitive therapy.

APPROPRIATE RESPONSES TO LIKELY QUESTIONS


BUT DOCTOR, I KNOW THERE IS SOMETHING WRONG WITH ME. PATIENT:
▪ I haven’t said that there isn’t anything wrong with you. DOCTOR:
▪ I know that chronic fatigue syndrome is a real illness that causes very real
symptoms and problems for people who’ve got it.
▪ What we have been able to establish, and this is good news, is that there is
no serious infection, cancer or anything like that to explain your symptoms.
YOU JUST THINK I’M DEPRESSED, DON’T YOU? PATIENT:
▪ no, I haven’t said that. DOCTOR:
▪ People with any severe illness are prone to get depressed, which can be a
natural reaction in this situation.
▪ But I don’t think that chronic fatigue syndrome is all due to depression or all
in the mind, although sometimes depression can make it worse.
THERE MUST BE SOME MORE TESTS YOU CAN DO PATIENT:
▪ yes, a doctor can always do more tests, but that wouldn’t be the right thing DOCTOR:
to do here and we don’t plan to do any more.
▪ We would only do more tests if the situation were to change in some way
that made us think we should check something else out.
▪ But we have all discussed things, and we don’t think that any more tests are
necessary at the moment.
CAN I HAVE A SECOND OPINION? PATIENT:
▪ yes, you can. DOCTOR:
▪ Your GP could refer you to someone else and, if it was helpful, we could
give your GP advice as to who they might refer you to.

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▪ But I would be concerned that this might delay you getting started on
appropriate treatment.
WHAT TREATMENT IS THERE? PATIENT:
▪ chronic fatigue syndrome is not an easy thing to treat – I won’t pretend that DOCTOR:
it is – but there are two treatments that are known to be effective.
▪ The first is graded exercise, where you aim to gradually improve your energy
levels by increasing daily activities in a planned fashion.
▪ The second is cognitive behavioural therapy, where you explore reasons and
triggers for your illness with a therapist and determine appropriate
responses to those triggers.
▪ Either we or your GP could make a referral for you to visit someone who
can help you with cognitive behavioural therapy, but it isn’t always easy to
get access to this treatment.
WHAT ABOUT VITAMINS OR MEDICATIONS? PATIENT:
▪ I am afraid that there aren’t any vitamins or medications that help this DOCTOR:
condition.
▪ Antidepressants are sometimes used if we feel that there is coexistent
depression, and they may help if someone has a sleep disorder.

CASE 27
MALAISE, MOUTH ULCERS AND FEVER
ROLE: you are a junior doctor working on a general medical ward.

A 54-year-old gay man is admitted on the medical take complaining of malaise, rash, mouth ulcers
and pyrexia.
You suspect HIV infection and want to encourage him to take the test but he is reluctant.
YOUR TASK:
explore the reasons for the man’s reluctance to test for HIV and explain why you think he should
agree to be tested.
KEY ISSUES TO EXPLORE
▪ Why is he reluctant to test?
▪ You will begin by asking him open-ended questions, but if the reasons are not forthcoming you
will need to probe regarding common reasons for reluctance, including:
o fears about confidentiality;
o misconceptions about the prognosis of HIV;
o concern that he may lose his mortgage/insurance as a result of being found
HIV-positive, or even through the act of testing for HIV.
▪ It will also be appropriate to discuss the following.
▪ What will he feel like if he fails to test but subsequently develops a severe illness?
▪ What about his partners?
▪ Shouldn’t they be given the information that they may be at high risk of HIV?

KEY ISSUES TO ESTABLISH


• Reassure the patient about confidentiality: you have a duty of care which includes confidentiality.
• Explain that with modern antiretroviral therapy (see Section 2.11) the prognosis of HIV is very good
and management has become that of a chronic condition in which patients mostly feel very well.
People now rarely die of AIDS in the UK.

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• Taking an HIV test will not affect any current insurance or mortgage, even if the test is positive.
• His partners may be asymptomatic and yet still could be HIV-positive and therefore are best told of
any risk.

APROPRIATE ANSWERS TO LIKELY QUESTIONS


I WOULD RATHER NOT KNOW THE DIAGNOSIS. PATIENT:
THERE IS NOTHING YOU CAN DO ABOUT HIV ANYWAY, IS THERE?
▪ I am pleased to say that that’s not true: there are several good reasons DOCTOR:
why you should know the diagnosis.
▪ If you have HIV, we can do tests to see how badly your immune system
has been affected: the CD4 count.
▪ If the count is low you would need to go on treatment, and modern
treatment is very safe and effective.
▪ Even if you don’t need treatment, we can monitor your health with regular
blood tests and start treatment when the time is right; this would stop you
becoming ill.
▪ If managed in this way, most patients in the UK with HIV infection will live
for many decades and possibly have a near-normal lifespan if they get the
right treatment.
I WOULD RATHER WAIT UNTIL I BECOME MORE ILL. PATIENT:
ISN’T THAT THE BEST TIME TO TAKE TREATMENT?
▪ no, I don’t think so. DOCTOR:
▪ As the disease progresses it damages the immune system more and
more, and if it becomes so badly damaged that the person becomes ill
with a very severe infection or cancer it may be too late to save their life.
▪ For HIV treatment to work properly, so that people with the disease can
live for a long time, it is best to start it before they become seriously ill.
I AM WORRIED ABOUT CONFIDENTIALITY. PATIENT:
WON’T PEOPLE FIND OUT ABOUT ME?
▪ I can understand why you are worried about this, but all healthcare DOCTOR:
workers are bound by a duty of confidentiality.
▪ If any healthcare worker is discovered to have breached confidentiality
without good reason they will be punished, and they may lose their job.
▪ HIV units are especially aware about maintaining confidentiality, but it is
often in the patient’s best interest that other people are told.
▪ For instance telling the GP means that someone doesn’t get the wrong
treatment if the GP is aware of that person’s HIV status.

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▪ Many people also find that it is good to tell close friends and join
community HIV support groups as they can help the person talk through
the problems they face, but this would be your decision.
DO YOU HAVE TO TELL MY PARTNER? PATIENT:
▪ if your partner was my patient, then I would have a clear duty of care to DOCTOR:
him and would have to tell him; but he is not my patient, so I don’t have to
tell him.
▪ However, in some circumstances doctors are allowed to break
confidentiality, for instance if they think that a patient is putting the lives of
other people at risk.
▪ If you are HIV positive, and we don’t know if you are yet, then I would
strongly advise that you do tell your partner.
▪ I could help you do this if that would be helpful, because if he is positive
then he would benefit from being diagnosed and monitored or treated in
the same way that I think you would.
▪ I am sure that you wouldn’t want to be responsible for denying him the
opportunity to make his own decisions about this, would you? I must also
say to you that if you have unprotected sex with your partner and he finds
out about the HIV later from someone else, then he could have you
prosecuted for endangering his health.
▪ People have been sent to prison for this.
WON’T I BE FINANCIALLY DISADVANTAGED IF PEOPLE LIKE MY INSURANCE PATIENT:
COMPANY FIND OUT THAT I AM HIV-POSITIVE?
▪ any existing insurance and mortgage policies will not be affected and will DOCTOR:
continue in the normal way.
▪ If you are positive you are right that you will find it more difficult to get
insurance, but there are companies that will offer insurance to people with
HIV, especially as the prognosis has improved so much.
▪ If you test HIV-negative, then this won’t affect any current insurance
policies either and a negative test also won’t have any effect on your
future insurance chances.
▪ The insurance companies now accept an HIV test as being a ‘routine’ test
and are more interested in your future risks based on the information you
give them on the application form.

HIV testing
• In the mentally competent this must always be performed with consent.
• Testing without consent is only acceptable if the patient is not competent and the test is in their
best interests.
• Pre- and post-test discussion should be available.

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CASE 28
DON’T TELL MY WIFE
ROLE: you are a junior doctor working in a medical outpatient clinic.

A 38-year-old man is referred to the outpatient clinic because of weight loss.


On examination he has oral candida.
After appropriate discussion he consents to testing for HIV.
The result is positive.
He returns to the clinic and accepts advice that he should start antiretroviral therapy, but is not
willing to accept that his wife should be told about the diagnosis.
YOUR TASK: to explain to the man why his wife should be told.
KEY ISSUES TO EXPLORE
▪ The man has just tested positive for HIV and a common reaction is to want no one else to
know.
▪ The discussion is likely to be difficult, but important things to find out include the following.
o What does he understand about how HIV is transmitted,
o how it can be treated
o what the prognosis is with treatment?
o His views about informing his wife and others may be based on significant
misconceptions.
o What are his fears about revealing the diagnosis to his wife?
o What would he feel like if his wife became ill and this could have been prevented if she
had been told about the HIV?
o What happens if his wife finds out through other means?
O What will that do to their relationship?
o Does he have children?
o If his wife is also positive then they are also at risk and need to be tested.
o Does he have other sexual partners who may also be at risk?

KEY ISSUES TO ESTABLISH


▪ Make it clear that his care is your main priority and that your aim is to help him to understand
HIV and what options will be open to him.
▪ Facts regarding the transmission of HIV and its prognosis with appropriate monitoring and
treatment.
▪ Reassure him about confidentiality: you have a duty of care to him which includes
confidentiality.
▪ However, if his wife is also your patient, then inform him that you have a duty of care to her
and that if he doesn’t tell her then you will do so.
▪ If his wife is not your patient, then your duty to her is less clear-cut, but you should inform him
that if he has unprotected sex with her and she finds out about the HIV later from someone
else then she could have him prosecuted for endangering her health, and that people have

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been sent to prison for this.

APROPRIATE ANSWERS TO LIKELY QUESTIONS


MY WIFE LOOKS HEALTHY ENOUGH SO SHE CAN’T HAVE HIV, CAN SHE? PATIENT:
▪ I’m afraid we can’t be sure of that. DOCTOR:
▪ People with HIV can remain healthy for many years, so you can’t tell just
by looking at them and so she might be positive.
▪ If she is, then we would advise her about the proper tests and treatment
that would prevent her becoming ill in the future.
▪ If she is negative, then we can do our best to make sure that she and any
children you may have in the future will remain negative.
IF I TELL MY WIFE ABOUT THE HIV TEST SHE MIGHT LEAVE ME. PATIENT:
AS LONG AS I USE CONDOMS SHE WON’T BE AT RISK, WILL SHE?
▪ I’m afraid that can’t be guaranteed. DOCTOR:
▪ You may have been HIV positive for many years and your wife could have
become infected at any time during this period.
▪ You are right that condoms are very good protection against HIV if used
properly, but they sometimes break or come off, and if your wife is
HIV-negative now she would be at risk of catching the infection each time
this happens.
▪ This risk can be greatly reduced by giving immediate treatment called
postexposure prophylaxis if a condom fails, but if she doesn’t know about
the HIV then she wouldn’t know to take this treatment.
WILL YOU TELL MY WIFE, EVEN IF I DON’T GIVE MY PERMISSION? PATIENT:
▪ if she attends the clinic and is my patient, then I will have to tell her DOCTOR:
because I know she is at risk of catching the infection and my duty as a
doctor is to protect my patients from harm.
▪ But I would prefer that you tell her as that shows your trust in her.
▪ If she is not my patient, the rules of confidentiality mean that I don’t have
to find her and tell her if you refuse permission, but I cannot lie if she or
her GP ask me directly.
▪ I certainly would feel unhappy that she hasn’t been told: it is best for
everyone if she is told, and there are many people who are experienced in
HIV who can help you do this.
▪ Also, I have to tell you that if you have unprotected sex with her and she
finds out about the HIV later from someone else, then she could have you
prosecuted for endangering her health and people have been sent to
prison for this.
I HAVE HAD UNPROTECTED SEX WITH MY WIFE FOR MANY YEARS. PATIENT:
WHAT ARE THE CHANCES SHE IS STILL NEGATIVE?
▪ transmission of HIV between couples is variable and depends on many DOCTOR:
factors.
▪ We very frequently find couples where one partner is positive and the
other negative after many years together, so you can’t assume that your
partner is positive.

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▪ Furthermore, if she is negative now, then she can still catch the infection
from you in the future.
▪ You are potentially putting her at risk if you have unprotected sex with her
now that you know you are positive, and there is a growing number of
people who have been prosecuted and sent to prison for having
unprotected sex when they knew they were HIVpositive and their partner
was at risk of catching the infection.
▪ It is therefore best to tell her before putting her at risk and before she finds
out some other way: for instance, if she becomes pregnant then she will
be offered an HIV test and might find out that way.
I HAVE TWO CHILDREN AGED 2 AND 10 YEARS OLD. PATIENT:
WHAT ARE THE CHANCES OF THEM BEING POSITIVE?
▪ your children cannot catch HIV from you unless you were to bleed heavily DOCTOR:
and they were to be covered in your blood.
▪ Things such as kissing or sharing a toothbrush are not a risk, but if your
wife is HIV-positive then your children might have caught it from her at
birth or from breast-feeding if she wasn’t tested for HIV when she was
pregnant.
▪ Children who are HIV positive can sometimes remain well for many years,
but then eventually can become very ill or die unless diagnosed early and
given the right treatment.
▪ If you tell your wife about your condition, you can then find out if your
children need a test according to her result.
IF I DIE, WILL YOU TELL MY FAMILY ABOUT THE HIV? PATIENT:
▪ it is a legal responsibility for the doctor to put the accurate cause of death DOCTOR:
on the death certificate, so if you die of HIV then this has to be mentioned
on the death certificate.
▪ The person registering your death, who is normally one of your close
family members, will see this.
▪ Although my duty of confidentiality to you continues after death, under
these circumstances it is likely that I will meet your wife and I would have
to tell her that she is at risk of being infected, even if I can’t tell her your
medical history without your previous consent.
CAN I BRING MY WIFE HERE FOR YOU TO TEST HER WITHOUT TELLING HER PATIENT:
WHAT THE TEST IS?
▪ no, we can’t do that. DOCTOR:
▪ We cannot do any test without informed consent, which means that we
would have to tell your wife she is having an HIV test.

CASE 29

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RENAL DISEASE IN PREGNANCY
ROLE: you are a junior doctor in a nephrology outpatient clinic.

Mrs Jean Booth is a 27-year-old woman who is known to have reflux nephropathy with moderate
renal impairment.
She is hypertensive and taking lisinopril 10 mg daily.
She attends the nephrology clinic every 6 months for review.
Her routine pre-clinic investigations demonstrate proteinuria (1.2 g per 24 hours) and creatinine196
μmol/L (estimated glomerular filtration rate 28 mL/min).
Her BP is 156/90 mmHg.
She tells you that she is planning to start a family.
This is something that she has said before and a previous letter in the notes from the renal
consultant to the patient’s GP has documented that there would be considerable risks: at least a
50% chance of significant rapid deterioration in the patient’s renal function and at least a 50%
chance of fetal loss.
YOUR TASK:
to explain the implications of pregnancy with regard to the patient’s renal condition.
KEY ISSUES TO EXPLORE
▪ What is her understanding of the risks of pregnancy to her own health.
▪ What does she think the chances are of her having a healthy baby?
▪ What does she understand about the risks to pregnancy caused by her medication?
KEY POINTS TO ESTABLISH
▪ Pregnancy poses a very significant risk to her own health.
▪ There is a high chance that pregnancy will not be successful.
▪ Angiotensin-converting enzyme inhibitors (lisinopril) are contraindicated in pregnancy.
▪ That you will try to give her the best care, whatever she decides about pregnancy.

APPROPRIATE RESPONSES TO LIKELY QUESTIONS


I FEEL PERFECTLY WELL, SO I MUST BE FIT ENOUGH TO HAVE A CHILD. PATIENT:
▪ it’s obviously good that you feel well, but I am afraid that this does not DOCTOR:

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mean that there aren’t any problems.
▪ Kidney disease does not make people feel ill until it is very bad indeed;
but the fact that your blood pressure is high, that you have protein in the
urine and the blood test showing that kidney function is about 30% of
normal all mean that the risks of pregnancy would be very high.
WHAT DO YOU MEAN BY VERY HIGH? PATIENT:
▪ I mean that there’s at least a 50% chance that the stress of pregnancy DOCTOR:
would make your kidneys get significantly worse, and at least a 50%
chance that the pregnancy would not go well, so you would not end up
with a healthy baby.
YOU AND ALL THE OTHER DOCTORS ARE JUST TRYING TO FRIGHTEN ME, PATIENT:
AREN’T YOU?
▪ no, we’re trying to give you the proper facts. DOCTOR:
▪ I’d like to be able to tell you that there aren’t any problems, but that
wouldn’t be true.
▪ The risks of pregnancy for you are much higher than they are for a woman
who doesn’t have kidney problems, and it’s important that you understand
this.
IF I DO GET PREGNANT, THEN WHAT WOULD YOU DO? PATIENT:
▪ we would try and look after you as well as we can. DOCTOR:
▪ We would want to see you in clinic as soon as you knew you were
pregnant, and we would monitor your blood pressure and kidney function
very carefully.
▪ And if things were going wrong, we would talk to you about it.
IF I AM GOING TO GET PREGNANT, SHOULD I DO ANYTHING BEFORE? PATIENT:
▪ we should try and get better control of your blood pressure and we should DOCTOR:
change the blood pressure tablet, because lisinopril – the one you’re
taking at the moment – can cause problems in pregnancy.
IF I HAVE A CHILD, WILL IT DEVELOP THE SAME KIDNEY PROBLEMS AS ME? PATIENT:
▪ it’s not inevitable, but it is possible that they might. DOCTOR:
▪ If this was a concern, then the baby could have scans done to see.

CASE 30
A NEW DIAGNOSIS OF AMYLOIDOSIS

ROLE: you are a junior doctor working on a renal ward.

Mr Stephen Foster is an anxious 45-year-old man who was admitted for investigation of nephrotic
syndrome (oedema, proteinuria of 16 g per 24 hours and serum albumin 15 g/L).
His plasma creatinine is normal.
He has a history of long-standing ankylosing spondylitis and the renal biopsy showed deposits of
AA amyloid.

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His case was discussed on the renal ward round.
Treatment of his ankylosing spondylitis may reduce inflammation and thereby his tendency to form
amyloid, but this is unlikely to have a dramatic effect and it is expected
(1) that he will require continued symptomatic treatment for his oedema and proteinuria;
(2) that his renal function is likely to deteriorate with time, even to the point where he requires
dialysis, but this is not predictable; and
(3) that his amyloid may cause problems with function of other organs in the future, but this also is
not predictable.
YOUR TASK: to explain the diagnosis of amyloidosis to the patient and discuss what this means for
his future.
KEY ISSUES TO EXPLORE
▪ What is his understanding of the situation?
KEY POINTS TO ESTABLISH
▪ The link between ankylosing spondylitis and amyloidosis.
▪ The multisystem and progressive nature of amyloidosis.
▪ That control of the underlying inflammatory disease can halt/slow progression of amyloidosis.
▪ That symptomatic treatments can help his renal symptoms.

APPROPRIATE RESPONSES TO LIKELY QUESTIONS


WHAT IS AMYLOID? I’VE NEVER HEARD OF IT PATIENT:
▪ it’s quite a rare problem so that isn’t very surprising. DOCTOR:
▪ When we get infection or inflammation in the body, the body makes special
proteins to try and fight the infection or inflammation, which is a good
thing.
▪ But if the inflammation goes on for a very long time, as in your case with
the ankylosing spondylitis, the body finds it difficult to get rid of the proteins
designed to fight inflammation and they get deposited in the tissues.
▪ In your case at the moment this is happening in the kidneys, and once the
proteins are there it’s very hard for the body to dissolve or break them up.
WHAT’S WRONG WITH MY KIDNEYS? PATIENT:
▪ at the moment your kidneys are actually doing their main job of removing DOCTOR:

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waste from the blood normally.
▪ The problem is that they are ‘leaky’, so some of the protein in your blood is
being lost into the urine.
▪ When this happens the kidneys try to make up for it by hanging onto more
salt and water than usual, which is why your ankles are swollen.
▪ We can help the ankle swelling with diuretics, ‘water tablets’, and we can
reduce the amount of protein leaking with a particular sort of blood
pressure tablet, an angiotensin-converting enzyme inhibitor.
IS THERE ANYTHING THAT WILL GET RID OF THE AMYLOID? PATIENT:
▪ no, I’m afraid that it’s extremely unlikely that it will be possible to get rid of DOCTOR:
it.
▪ But if the inflammation caused by the ankylosing spondylitis can be
reduced, then the rate at which it increases can be slowed down and it may
even improve a little.
▪ I am not an expert in this area, but we will discuss things with our
colleagues in the rheumatology department and see if they can recommend
any treatments to do this.
▪ This is something I am sure you’ll want to talk about with them in clinic.
WHAT HAPPENS IF THE AMYLOID IN MY KIDNEYS GET WORSE? PATIENT:
▪ there is a chance that over time the kidneys will work less well and stop DOCTOR:
cleaning the blood properly, so we will keep an eye on this with blood tests
in the clinic.
▪ If the kidneys do fail because of amyloid, this will not happen suddenly; it
will be a gradual process over many months and years, and we will let you
know what is happening so that we can plan treatment.
▪ It may be that you will need dialysis – that’s treatment to do the work of the
kidneys – in the future.
▪ You might not, but it is a possibility.
DOES AMYLOID AFFECT ANYTHING BESIDES MY KIDNEYS? PATIENT:
I HAD A QUICK LOOK ON THE INTERNET AND READ SOMETHING ABOUT AMYLOID
IN THE HEART BEING VERY SERIOUS.
▪ you are right that amyloid can cause trouble in other places, especially the DOCTOR:
bowel and liver.
▪ But these are less affected than the kidney and I’m pleased to say that,
although some other kinds of amyloid do affect the heart, the kind that you
have almost never causes heart trouble.
AM I GOING TO DIE FROM THIS? PATIENT:
▪ you’re right to think that this is a serious condition, and some people with DOCTOR:
amyloid do die earlier than they would have done otherwise.
▪ But at the moment the problem you have is not life threatening and many
people with this problem will not get worse for years and years.

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CASE 31
IS DIALYSIS APPROPRIATE?
ROLE: you are a junior doctor working on a renal ward.

A 78-year-old retired lecturer was found to have metastatic carcinoma 3 months previously.
No primary site has been identified and previously he declined further investigation and treatment.
He has been more short of breath for the last week and confused for about 2 days.
He has chronic renal failure, cause unknown.
Previous imaging has shown that both of his kidneys are of reduced size and his serum creatinine
was 300 μmol/L 2 months ago.
He is brought to the emergency department by his son who was visiting him.
His BP is 70/50 mmHg.
Blood tests show creatinine 670 μmol/L, urea 38 mmol/L and potassium 7.2 mmol/L.
You are called to give advice on the management of his renal failure.
You discuss this with the renal consultant who is on call and she says that dialysis would not be
appropriate and that he should be managed conservatively.
YOUR TASK:
to explain the management plan to the patient’s son, who is upset.
KEY ISSUES TO EXPLORE
▪ What is the son’s understanding of his father’s condition?
▪ Does he know about the diagnosis of malignancy, and does he know that his father declined
further investigation and treatment?
KEY POINTS TO ESTABLISH
▪ The background of malignancy.
▪ The patient’s wishes are more important than anyone else’s:

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▪ he is confused now, but when competent to make decisions he declined intervention.
▪ The patient is dying and heroic medical interventions would not change that, as well as being
contrary to his wishes.
▪ That you will ensure that the patient is not distressed, and will look after him until he dies.

APPROPRIATE RESPONSES TO LIKELY QUESTIONS


WHY IS MY FATHER SO ILL? SON:
▪ it’s difficult to be sure what has caused the recent deterioration, but it’s quite DOCTOR:
clear that his kidneys, which weren’t working normally before, have got worse
– he has advanced kidney failure.
▪ The kidneys control the levels of salts in the blood and also remove toxins and
the level of toxins and salts in your father’s blood are now very abnormal.
▪ They are at a level that might be responsible for his confusion, and also the
fact that the heart is not pumping properly.
▪ I’m afraid I think he is dying.
I THOUGHT KIDNEY FAILURE COULD BE TREATED WITH DIALYSIS. SON:
▪ you are right, it can be. DOCTOR:
▪ We can do the job of the kidneys with a dialysis machine, and this is
something we do for lots of people every day.
▪ However, dialysis treatment tends to lower the blood pressure, and his blood
pressure is already very low.
▪ He would not be strong enough for the treatment, and if we tried to give it I
think he might die more quickly.
▪ I think we ought to concentrate on making him as comfortable as possible.
BUT THERE MUST BE SOMETHING YOU CAN DO, SOME TESTS. SON:
▪ yes, there are obviously a lot of tests we could do, but I don’t think they’d do DOCTOR:
any good.
▪ We know that your father has got widespread cancer, which we cannot cure.
▪ Furthermore, a few months ago he was quite clear that he didn’t want more
tests and treatments, and it’s important that we all respect that view.
▪ We cannot make him better, and it would be wrong to put him through lots of
tests that won’t alter anything when he’s dying.
▪ We must make sure that he is as comfortable as possible.
BUT DON’T YOU THINK THAT’S WRONG? SON:
I CAN’T UNDERSTAND WHY HE DIDN’T WANT TO BE TREATED.
▪ I understand why you find that difficult, but people are very different and he DOCTOR:
has a cancer which he knew we couldn’t cure.
▪ Perhaps that’s why he was so clear that he did not want more tests and
treatments.
▪ Even people who are well in other ways often find some of the tests and
treatments we do very draining.
WHAT IS GOING TO HAPPEN IF YOU DON’T GIVE MY FATHER TREATMENT FOR HIS SON:
KIDNEY FAILURE?
▪ I think whatever we do he is going to pass away quite soon, and it’s likely to be DOCTOR:
within the next few hours.
IS HE SUFFERING? SON:
▪ no, I don’t think so. DOCTOR:

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▪ The toxins in the blood affect the brain, which is why he is confused.
▪ As they build up he is likely to become sleepy, but if he seems to be distressed
in any way, we can give him some medicine to make him more comfortable.
▪ If his heart stops, we won’t go jumping up and down on him to try and
resuscitate him, we will let him die peacefully.

CASE 32
GENETIC IMPLICATIONS
ROLE: you are a junior doctor in the neurology outpatient clinic.

Mr David Johnson, aged54 years, is referred to the neurology clinic because of behavioural change
and increasing cognitive difficulties.
His son, who attends with him, has also noticed that his father has become increasingly ‘fidgety’.
Mr Johnson has no significant past medical history, but an extended family history, given by the
son, reveals that Mr Johnson’s mother (the son’s grandmother) died in middle age with dementia,
but this is something that ‘the family don’t talk about’.
It is difficult to be sure how much Mr Johnson understands, but he tells you that you should ‘talk
about anything you want with my son’.
He has also said the same thing to his GP, who arranged for the son to attend the clinic with his
father.
The view of the neurological team is that the most likely diagnosis is Huntington’s chorea, which
could be confirmed by genetic testing.
YOUR TASK: to discuss the implications of genetic testing for Huntington’s disease with Mr
Johnson’s son.
KEY ISSUES TO EXPLORE
• The son’s knowledge of the disease and the diagnostic testing available.
• ‘If you have Huntington’s disease, would you like to know’?
• Why test when the disease is incurable?
KEY POINTS TO ESTABLISH
• The fact that any test results will have widespread implications for other family members, including
the son himself.
• That testing may or may not clarify matters, but if the results are negative the problem will not be
cured and so further investigations may be needed.
• That there is no treatment for Huntington’s disease.
• Although it is difficult to produce‘black and white’ rules in an area where much is grey, most
physicians with experience of Huntington’s disease feel that it is inadvisable to test in the following
circumstances: children under18 years; for insurance purposes;
if the patient is reluctant; and if the result automatically reveals someone else (ie a parent) to have
the disease without their consent.
• After any test, follow-up will be required whatever the result.
GENETIC TESTING ISSUES TO CONSIDER IF THIS IS TO BE USED INCLUDE THE FOLLOWING.
• Depression may follow a positive or negative result (‘survivor guilt’).

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• Suicide after a positive result has occurred, but this is no more common than for any other
disease or chronic disability.

APPROPRIATE RESPONSES TO LIKELY QUESTIONS


I DON’T KNOW ABOUT HAVING THE GENETIC TEST. SON:
IS THERE ANYBODY ELSE I CAN SPEAK TO ABOUT IT?
▪ yes, I can make a referral to the regional specialist clinical genetics service, DOCTOR:
where you and your father would be able to receive further counselling
regarding the test.
CAN MY FATHER AND I HAVE THE TEST DONE TODAY? SON:
▪ because of all the things that the test might mean, I feel it is important for DOCTOR:
you to have pretest counselling.
▪ This is provided by the regional specialist clinical genetics service.
▪ I will refer your father and you to them.
WHAT DO YOU MEAN WHEN YOU SAY ‘ALL THE THINGS THAT THE TEST MIGHT SON:
MEAN’?
▪ Huntington’s is a genetic disease, which means that it runs in the family. DOCTOR:
▪ If your father has Huntington’s – and we don’t know that at the moment –
but if he does, then there is a 50% chance that he will have passed it on to
each of his children.
▪ I’m afraid that means there’s a one-in-two chance that you will have it, and
also a one-in-two chance that any of your brothers and sisters will have it.
IF THE TEST SHOWS THAT SOMEONE’S GOT HUNTINGTON’S, CAN ANYTHING BE SON:
DONE ABOUT IT?
▪ I’m afraid that there is no specific treatment for Huntington’s. DOCTOR:
▪ There are things that can be done to help the symptoms, for instance drugs
can sometimes help the distressing movements, but there isn’t any
treatment that will deal with the underlying disease.
IF I WAS TESTED AND WAS POSITIVE, WILL I THEN KNOW AT WHICH POINT THE SON:
DISEASE WOULD START TO CAUSE ME TROUBLE?
▪ no, the timing can be variable and the onset of the disease could only be DOCTOR:
established by examining you neurologically.
SO, DO WE HAVE TO HAVE THE TEST DONE? SON:
▪ no, you don’t. DOCTOR:
▪ As you can see it’s a difficult issue, which is why I think that talking to
someone in the clinical genetics service is necessary rather than just racing
into the test.
▪ Some people decide that they want to know, and some people decide that
they don’t.
▪ There isn’t a right and a wrong answer to the question.

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CASE 33
EXPLANATION OF THE DIAGNOSIS OF ALZHEIMER’S DISEASE
ROLE: you are the neurology junior doctor working in a general neurology outpatient clinic.

Mr Harry Wilson is a 69-year-old man who has come to clinic with his wife and one of his sons.
He saw your colleague 2 months ago for investigation of memory difficulties.
His symptoms have been coming on for several years and his wife initially took no notice of his
memory lapses.
Recently he has become disinterested in all activities, but his wife does not feel that he is
depressed.
His wife tells you that he is a shadow of his former self and can sit alone in a chair for hours
without initiating conversation or activity.
He recently had to be brought home by a friend after he was found wandering back and forward in
front of his local shops.
They have two sons in their forties.
The results of the blood tests, including thyroid function, erythrocyte sedimentation rate, syphilis
serology and B12 were normal.
His CT scan demonstrated some mild generalised atrophy, but there was no evidence of
hydrocephalus, subdural haematoma, focal cortical atrophy or infarcts.
His electroencephalogram demonstrated some diffuse slow waves but no overt epileptiform
activity.
The diagnosis is probable Alzheimer’s disease.
His wife is finding it very frustrating as her husband does not appear to be aware of most of his
problems.
She would like to know what has caused his memory problems, and their son is anxious that it may
affect him: ‘Is it mad cow disease?’ At the neurological meeting some of these issues have been
discussed recently: the risk of inheriting late-onset Alzheimer’s disease is not high, perhaps two to
three times the risk of it occurring in a member of the general population with no family history.
YOUR TASK: to explain to the patient and his wife and son the diagnosis of probable Alzheimer’s
disease, its prognosis and treatment, as well as discussing the probability of inheriting late-onset
dementia.
KEY ISSUES TO EXPLORE
▪ A common problem with patients who have Alzheimer’s disease is that they often have little
insight into how they have been affected.
▪ This can cause significant problems, especially with frustration, within the family.
▪ The prognosis of the condition.
▪ The issue of symptomatic treatment with anticholinesterase inhibitors.
▪ Risk of family members developing the disease.
KEY POINTS TO ESTABLISH
▪ The diagnosis and prognosis of Alzheimer’s disease.
▪ Possible treatment symptomatic options.
▪ Genetic risks in first-degree relatives.
▪ Future care involving the Alzheimer’s Society, the patient’s GP and social services in
conjunction with regular outpatient follow-up.

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APPROPRIATE RESPONSES TO LIKELY QUESTIONS

WHAT IS THE DIAGNOSIS? WIFE:


▪ the diagnosis is almost certainly a form of dementia called Alzheimer’s DOCTOR:
disease, although doctors can never be100% certain in life of the diagnosis.
▪ Other treatable causes of dementia have been excluded with the tests that
have been done, and any other diagnoses would be degenerative brain
conditions similar to Alzheimer’s.
WHAT DO YOU MEAN BY A DEGENERATIVE BRAIN CONDITION? WIFE:
▪ I’m afraid it means that the brain gradually deteriorates, and we don’t have DOCTOR:
any treatments that will stop this happening.
HOW LONG HAS HE GOT TO LIVE? WIFE:
▪ I can’t give you a definite answer, not because I’m hiding, but because I don’t DOCTOR:
know.
▪ However, he is not imminently in danger of dying, but I’m afraid that his
ability to do things for himself will slowly get worse and he is likely to need
more and more care in the next few years.
WHAT IS THE CHANCE OF ME DEVELOPING ALZHEIMER’S DISEASE? SON:
▪ your father has what we call late-onset Alzheimer’s disease, so the risk of DOCTOR:
you developing Alzheimer’s is higher than in the general population, perhaps
two to three times more likely.
CAN I HAVE ANY TESTS TO FIND OUT WHETHER I WILL GET ALZHEIMER’S? SON:
▪ no, there aren’t any tests that will detect whether people are going to get DOCTOR:
late-onset Alzheimer’s.
▪ It may be that such tests will become available in the future, but unless
there’s some sort of treatment that can be offered it will require very careful
thought as to whether you, or anyone else, would want to be tested.
IS THERE ANY TREATMENT OR CURE? WIFE:
▪ I’m afraid that there is currently no cure for Alzheimer’s. DOCTOR:
▪ But there is a group of drugs, called the anticholinesterase inhibitors, that
are relatively new and may have a mild symptomatic benefit in some
patients by increasing one of the chemicals in the brain that is low in those
with Alzheimer’s.
▪ However, it is not known if these drugs alter the long-term outlook.
▪ If your husband did want to try them, he would be monitored with memory
tests every 3–6 months initially.
▪ If there was ongoing deterioration, then the drug would probably not be of
benefit and would probably be stopped.
ARE THERE ANY MORE TESTS THAT CAN BE DONE? WIFE:
▪ no, there are no more specific tests that would be helpful. DOCTOR:
▪ Neuropsychometry is a more formal and accurate way of assessing the
degree and types of thinking problems your husband has, and it may be
useful in monitoring progression of the disease and response to treatment;
but there aren’t any other critical tests that need to be done.
WHERE CAN I GET MORE INFORMATION AND HELP? WIFE:
▪ some patients and their carers find contact with the Alzheimer’s Society DOCTOR:
helpful.
▪ I will write to your GP outlining our conversation and send you a copy of the

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letter.
▪ Your GP will be able to initiate contact with social services, nurses and
other health professionals as and when they are needed.

CASE 34
PROGNOSIS AFTER STROKE
ROLE: you are the medical junior doctor working on a care of the elderly ward.

Mr John Smith, a 78-year-old man, was admitted to your ward yesterday following sudden onset of
right-sided weakness and speech difficulties.
He is also unable to swallow safely.
There has been no change in his condition over the last 24 hours: he has no movement in his right
arm or leg, he cannot speak and he does not respond to simple commands.
A CT brain scan has shown a large left-sided middle cerebral artery infarct.

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His prognosis is very poor.

YOUR TASK: to explain to Mr Smith’s wife that he has had a large stroke and may not survive; and
also that if he does survive, there is a high chance of severe disability.
KEY ISSUES TO EXPLORE
▪ What does the patient’s wife know already about her husband’s condition?
▪ What are her expectations?
▪ What does Mrs Smith already know and, in particular, what does she understand by the term
‘stroke’?
KEY POINTS TO ESTABLISH
▪ That you would normally obtain permission from a patient to speak to the relatives, but this is
not possible due to communication difficulties.
▪ That Mr Smith is very unwell having suffered a large stroke; that there is a large amount of
damage seen on the brain scan, and that it is not possible to reverse this damage; that
everything that can be done for Mr Smith is being done and that he is quite comfortable; that
he could die from this illness and that the first few days are particularly unpredictable; and
that even if Mr Smith does not die as a result of the stroke it is very possible that he will have
some long-term disability as a result, but that the nature and extent of this cannot be
determined at this early stage.
▪ That Mrs Smith is introduced to key members of the stroke team and encouraged to ask as
many questions as she wishes.

APPROPRIATE RESPONSES TO LIKELY QUESTIONS

WHY DID THIS HAPPEN TO HIM? WIFE:


▪ there are lots of reasons why people have a stroke, especially as they get older. DOCTOR:
▪ Your husband’s scan shows a type of stroke caused by a blood clot rather than
a bleed, but we don’t know exactly what caused this.
▪ At the moment we need to focus our attention on looking after him, but if he
shows signs of recovery then he will have more tests to see if we can find the
cause.
DOES HE NEED AN OPERATION? WIFE:
▪ no, that wouldn’t help. DOCTOR:
▪ We very rarely operate on patients who have had a stroke, unless the scan

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shows us that the brain is under a lot of pressure.
▪ We didn’t see this on your husband’s scan so an operation would not help him.
▪ In fact it would almost certainly make things worse.
CAN HE BE GIVEN A NEW‘CLOT-BUSTING’ DRUG? WIFE:
▪ no, I’m afraid not. DOCTOR:
▪ You are right that there are drugs available which can dissolve blood clots –
they’re often used for patients who have had heart attacks – but using them for
people who have had strokes is not at all straightforward because they can
cause severe bleeding in the brain that makes things worse.
▪ They are sometimes used, but only in people with some sorts of stroke and who
have got to hospital very quickly.
▪ In your husband’s case I’m afraid they wouldn’t help – they wouldn’t do any
good and the risk of bleeding on his brain would be very high.
IS HE GOING TO LIVE? WIFE:
▪ I’m not hiding anything when I say I don’t know. DOCTOR:
▪ As you know he’s had a big stroke, but I don’t know whether or not it’s going to
kill him.
▪ We have to take things hour by hour and day by day at the moment, but if there’s
any change in his condition then, assuming it’s what you would like, we will let
you know immediately.
IF HE DOES SURVIVE, THEN WHAT SORT OF DISABILITY COULD HE HAVE? WIFE:
▪ again, I’m afraid that I can’t give you a definite answer as to what will happen DOCTOR:
but the stroke is on the left side of his brain, which controls the right side of his
body and his speech.
▪ At the moment he is unable to move his arm and leg and he cannot speak.
▪ The extent to which these functions will recover is unpredictable, but if he
stabilises and shows progress over the next few days then our team of
physiotherapists, speech and language therapists and occupational therapists
will make some assessments.
▪ They will then devise treatment plans with the aim of recovering as much
function as possible. If he does survive, the rehabilitation programme will last
▪ many months and he still may require help to look after himself.
▪ There is a high chance that he will need to use a wheelchair, at least in the early
stages and perhaps in the long term, and he may also have persistent problems
with understanding and speech.
SHOULD I TELL MY SON TO FLY HOME FROM HIS HOLIDAY? WIFE:
▪ your husband is in a stable condition for now, but he could become worse at DOCTOR:
any time.
▪ This can happen suddenly and he could deteriorate very quickly and even die.
▪ I would suggest that you should speak to your son and ensure that he
understands this.
▪ He can then make a decision based on this information as to whether or not to
return.

Despite recent advances in the management of acute stroke, the prognosis remains poor, with up
to 20% of patients dying within 30 days of the onset of the stroke.
It is important when breaking the news of a large stroke to relatives that you are realistic about
the chances of survival and full recovery.

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CASE 35
CONVERSION DISORDER
ROLE: you are the neurology junior doctor working on the neurology ward.

Miss Kate Beaumont was originally referred to the epilepsy clinic with a 2-year history of frequent
episodes of apparent loss of consciousness.
She is taking antiepileptic medication.
These attacks were recently witnessed on the neurology ward while she was undergoing
videoelectroencephalogram(EEG) telemetry.
The episodes do not have an epileptic basis on either clinical or EEG grounds.
Other investigations have also been normal, and a diagnosis of non-epileptic attack disorder has
been made.
The neurology team have agreed that no further investigations are required.
Miss Beaumont wishes to know what the cause of her attacks is and how you are going to treat
them.
YOUR TASK: to explain to Miss Beaumont that the attacks are not due to epilepsy but have a
psychological basis and are best managed with help from the neuropsychiatry team.
KEY ISSUES TO EXPLORE
▪ What does the patient think is the cause of her attacks?
▪ What were the possible triggers more than 2 years ago that led to the attacks emerging?
▪ Is there any relevant past psychological history, eg depression, anxiety or self-harm?
KEY POINTS TO ESTABLISH
▪ Appropriate tests have given reassuring results and further tests are not indicated.

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▪ The episodes will not improve with antiepileptic medication, which should be gradually
withdrawn.
▪ The most appropriate therapy is psychological, and this is usually successful in reducing the
attack frequency or stopping the attacks altogether.

▪ The patient is not considered to be ‘putting it on’ or ‘faking illness’.


▪ The patient has little control over the nature of the episodes.

APPROPRIATE RESPONSES TO LIKELY QUESTIONS


SO YOU THINK I AM PUTTING ON THE ATTACKS? PATIENT:
▪ no, not at all. DOCTOR:
▪ The attacks that you have are real, disabling and outside your conscious
control: they could be thought of as involuntary episodes of ‘switching
off’ or going into a ‘trance’.
▪ For example, we have all had times when we do not hear our name being
called when we are engrossed in a book or film, or remembering nothing
of a familiar journey home.
▪ We can all therefore be unaware or have no memory of episodes that we
have experienced.
WHY DO I HAVE THE ATTACKS? PATIENT:
▪ we don’t fully understand what causes this disorder, but twothirds of DOCTOR:
people with it have suffered some sort of traumatic experience in the
past.
▪ This may be important for us to talk about further.
▪ We can’t explain the link for certain, but it may be that when people are
exposed to repeated frightening incidents they learn to switch off.
▪ Initially this is a helpful thing for them to do; it protects them emotionally
at the time.
▪ But it may come back later in life as these attacks, so it may be that your
attacks are brought on by stress.
▪ However, sometimes people are initially unable to identify the triggers of
their attacks; and when they are found they often turn out to be fleeting
stressful or unpleasant thoughts that you may barely be aware of, and
which have little to do with your circumstances at the time of the attack.
AREN’T THERE ANY MORE TESTS YOU CAN DO? PATIENT:
▪ as you probably know, there are always more tests that doctors can do, DOCTOR:

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but I don’t think that any more tests would be helpful for you.
▪ You’ve had thorough tests done, including monitoring of the brain waves
when you’ve been having an attack, and we’ve discussed the results with
everyone in the neurology team.
▪ We think we should move on from doing tests to focus on how we can
try and treat the problem.
HOW DO YOU TREAT THE ATTACKS? PATIENT:
▪ in some patients clarification of the cause of the attacks and withdrawal DOCTOR:
of antiepileptic medication is enough for the episodes to stop or greatly
improve.
▪ If your attacks do not improve, then it is likely that we will need to refer
you to another part of our team, the neuropsychiatrists, with whom we
work very closely.
▪ They will need to see you and talk more about the cause of your attacks.
▪ Usually they suggest some form of counselling or therapy involving
changing your body’s response to a certain trigger or experience.
WILL I COME TO ANY HARM FROM HAVING THESE ATTACKS SO FREQUENTLY? PATIENT:
▪ there is no evidence that the attacks that you have cause you any harm, DOCTOR:
other than minor injuries that you may already have experienced such as
biting your tongue or friction burns from the carpet.
▪ It is theoretically possible to be hurt more seriously if an attack occurs at
the roadside or on the stairs, but this is extremely unusual and it’s very
rare for patients with this sort of problem to come to serious harm
because of them.

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CASE 36
EXPLAINING THE DIAGNOSIS OF MULTIPLE SCLEROSIS

ROLE: you are the neurology junior doctor in an outpatient clinic.

Miss Marlene Cox is a 34-year old woman who is coming back to the neurology clinic for the results
of her recent scans.
She was initially referred by her GP with numbness and tingling in the legs, and she has a past
history of episodes of blurred vision 6 months ago.
An MRI scan of her brain and spinal cord has shown several high-signal white matter lesions in both
cerebral hemispheres and a high-signal lesion at the level of C4 typical of demyelination.
Visual evoked potentials and the results of a lumbar puncture are all consistent with this diagnosis.
No further investigations are required.
She needs referral to the specialist multiple sclerosis (MS) service for discussion of further
management.
YOUR TASK: to explain to Miss Cox that the most likely diagnosis is MS.
KEY ISSUES TO EXPLORE
▪ What does the patient know/fear about MS?
▪ The prognosis and treatment options.
KEY POINTS TO ESTABLISH
▪ That the most likely diagnosis is MS.
▪ That there is no definitive test to make a diagnosis of MS, but that the combination of typical
symptoms and results from various tests help to make the diagnosis.
▪ That MS can manifest in many different ways and is not always disabling.
▪ Often patients with MS seen in the media are those with more severe disability.
▪ There are many thousands of patients with MS who live relatively normal lives, hold down jobs
and raise families.
▪ That there are now several treatments available: these cannot cure the condition but can help
to keep patients as healthy as possible for as long as possible.
▪ That the patient has the contact details of someone she can call when she leaves the clinic
(the MS specialist nurse if possible).

APPROPRIATE RESPONSES TO LIKELY QUESTIONS

HOW CAN YOU BE SURE I’VE GOT MS? PATIENT:


▪ there isn’t one single test that can ever prove the diagnosis of MS, but the DOCTOR:
problems that you’ve had – with the vision and now with the legs – coupled
with the test results, the scans, the vision tests and the lumbar puncture all
point to MS.

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▪ I wouldn’t be telling you the truth if I said anything different.
WILL I NEED TO USE A WHEELCHAIR? PATIENT:
▪ I’m not hiding anything when I say that I don’t know whether or not you will DOCTOR:
need to use a wheelchair in the future, but hopefully you will stay as well as
▪ you are now for a long time.
▪ As you know some patients with MS do deteriorate, but very many don’t.
▪ However, it tends to be the ones with severe disease that you see in the
papers or on the television.
▪ We will make sure we see you regularly so that you will be able to report any
changes in your condition to us.
DO I NEED ANY TREATMENT NOW? PATIENT:
▪ I’m afraid that there isn’t any treatment that has a magical effect in MS, but DOCTOR:
there are some treatments that can possibly help in some cases.
▪ I’m not an expert on this, but I want to suggest that I will make an
appointment for you to see someone from the MS specialist service so that
they can discuss things with you.
WHAT SHOULD I DO IF I DEVELOP NEW SYMPTOMS? PATIENT:
▪ you should still see your GP as the first port of call if you are worried about DOCTOR:
any new symptoms, because not everything you experience will necessarily
be caused by MS.
▪ Also, you can always contact the MS specialist nurse to discuss new
symptoms or problems with medication.
▪ You may also find it helpful to keep a diary of symptoms so that when you
come to clinic you are able to report any changes.
HAVE I PASSED THIS ON TO MY CHILDREN? PATIENT:
▪ that’s very unlikely. DOCTOR:
▪ We don’t know exactly what causes MS.
▪ There is a lot of research being done that is trying to establish what factors
can increase the risk of developing the condition, but it is not a genetic
condition that is inherited from parents.
▪ So although there is a slightly higher risk that children with an affected
parent will develop the condition, the risk is still very small indeed.

Beware of making a diagnosis of MS in patients who have had only one episode of central nervous
system demyelination.
This is referred to as a ‘clinically isolated syndrome’ and the patient may not ever have any further
symptoms.
Making a diagnosis of MS has many implications for the patient medically, socially and
psychologically.

CASE 37

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FREQUENT FALLS
ROLE: you are a junior doctor working on a general medical ward.

Mrs Elizabeth Dunn is aged 74 years and has been admitted after a fall.
Her daughter asks to speak to you.
She has heard that the occupational therapist is taking her mother on a home visit tomorrow.
Mrs Dunn’s daughter, who lives 50 miles away and rarely sees her mother, does not think she should
go home, but should be discharged to a residential home.
Mrs Dunn was admitted after a trip at home, following which she sustained bruising to her arms and
face.
She had no postural drop in blood pressure, a 12-lead ECG showed sinus rhythm and she has not
fallen while on the ward.
She has been started on prophylaxis against osteoporosis.
She has no mental health issues, wants to go home and it is the view of the multidisciplinary team
that it is reasonable for her to do so.
She gives you permission to talk to her daughter.
YOUR TASK:
to explain to Mrs Dunn’s daughter that Mrs Dunn wants to go home and has the right to make her
own decisions.
KEY ISSUES TO EXPLORE
▪ The patient’s autonomy.
▪ The patient’s right to choose where she goes on discharge.
▪ The patient’s capacity to choose where she goes on discharge.
▪ The patient’s safety.
KEY POINTS TO ESTABLISH
▪ That Mrs Dunn is happy for you to discuss her discharge plans with her daughter: introduce
the session by explaining that you have specifically sought permission from Mrs Dunn to talk
to her daughter.
▪ This sometimes comes as a surprise:
families may infantilise older members and need reminding gently that they have the same
rights to confidentiality as other adults.
▪ The daughter’s understanding of the situation.
▪ That Mrs Dunn has the capacity to decide to go home: capacity is situation specific, i.e she
may be able to go home safely but may not have the capacity to change her will.
▪ That ‘safety’ cannot mean absence of any risk.
APPROPRIATE RESPONSES TO LIKELY QUESTIONS

DAUGHTER: YOU CANNOT LET MY MOTHER GO HOME.


SHE WILL FALL OVER AGAIN AND MIGHT BREAK HER HIP NEXT TIME.
DOCTOR: ▪ we have looked into the reasons why your mother fell and we think that
she tripped.
▪ We have checked out her heart with an ECG – an electrical recording –
and everything seems to be in order.
▪ Furthermore, there is nothing to suggest that she had a fit or anything like
that.
▪ But I am afraid that I cannot give you a guarantee that she won’t fall again:
there will always be some risk, but admitting her to a residential home

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would not stop her from falling.
▪ The aim of the home visit is to assess her home for hazards and find out
what care package, if any, she needs to support her, and to make
arrangements to keep her as safe as possible.
DAUGHTER: BUT I’M TERRIFIED THAT SHE’LL BREAK HER HIP.
THAT’S WHAT HAPPENED TO HER MOTHER.
DOCTOR: ▪ I can understand why you are worried about this.
▪ I agree that she is at risk, as is pretty well every old person, of breaking her
hip.
▪ To cut down the risk we can assess her home to try and deal with things
that might trip her up, and we can provide aids like walking sticks and a
frame if that would be helpful.
▪ Also, we have started her on some tablets to treat thinning of the bones,
so that they’ll be stronger if she does have a fall.
DAUGHTER: MY MOTHER GETS CONFUSED AT TIMES, SO HOW CAN SHE MAKE HER OWN
DECISIONS ABOUT THIS?
DOCTOR: ▪ she is not confused at the moment.
▪ She is able to retain information and is able to weigh up risks about her
discharge.
▪ Why don’t you arrange to go on the home visit with your mother and the
occupational therapist? Then you can see what she is able to do safely
and say what you are concerned she will have difficulty with.
▪ After that you could discuss the amount of care that would make you feel
confident with the social worker and your mother.
▪ If Mrs Dunn’s daughter is still not happy, offer to arrange a meeting with
your consultant.

CASE 38
CONFUSION
ROLE: you are a junior doctor working on a medicine for the elderly ward.

You have been looking after Mrs James for over 2 weeks.
She is 84 years old and was originally admitted via the Emergency Department with cellulitis.
Her physical state has improved markedly since admission: she is no longer febrile and her white cell
count and C-reactive protein are returning to normal.
When she first came in she was extremely muddled, had an Abbreviated Mental Test Score of 2/10
and called out constantly.

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She has gradually settled and is walking short distances now using her rollator frame with the
physiotherapist.
However, she still gets restless in the evenings and found it difficult to make a cup of tea with the
occupational therapist.
Before admission she had a carer every morning and was apparently just managing.
She is now feeling better and is very keen to go home.
She is missing her cat greatly.
Her daughter, who lives a couple of hours’ drive away, has come to see her.
She is upset when the nurse tells her that a home visit is being organised in the hope that it will be
possible to discharge her mother home soon.
She feels that it would be more sensible for her mother to move into a residential home, especially as
the nurse has said she is still muddled.
She demands to speak to a doctor.
YOUR TASK:
to meet the daughter on the ward and discuss planning for her mother’s discharge home.
KEY ISSUES TO EXPLORE
• The patient’s autonomy: frail older people still have rights despite cognitive impairment.
• The patient’s right to choose where she goes on discharge.
• The patient’s capacity to choose where she goes on discharge, which in this case is reduced.
• The patient’s safety: a patient can fall and break a hip in a hospital or care home as well as at home.
KEY POINTS TO ESTABLISH
▪ Ask the daughter in detail about how her mother was coping prior to admission.
▪ She may have nonspecific concerns and be anxious (and often guilty) that she can do little of
practical help as she lives at a distance.
▪ If she has specific worries, then make a list as you need to address each one, eg if she fears
her mother might leave the gas hob on, then the gas can be turned off and carers can provide
hot meals with a thermos flask for hot drinks between their visits.
▪ Explain why Mrs James was admitted and that, although there is a degree of dementia, she is
less confused now.
▪ If her daughter knows nothing about dementia, give a brief explanation and a source for more
information(eg Alzheimer’s Disease Society).
▪ Explain that her mother will have a full multidisciplinary assessment and that an appropriate
care package will be arranged before she is discharged.
▪ Say that as her mother only had care once a day before admission, you anticipate that with
more care she should do well at home.
▪ Explain the drawback of residential care: institutionalisation often leads to rapid decline in
early-to-moderate dementia.
▪ Also, it will be difficult to find a home that will accept the cat, a key component of Mrs James’
quality of life, and this may affect her longevity.
APPROPRIATE RESPONSES TO LIKELY QUESTIONS
BUT SURELY MY MOTHER WOULD BE MUCH SAFER IN A HOME? DAUGHTER:
▪ I can understand why you think that, but because of her dementia she is likely DOCTOR:
to find it difficult to adjust to a new environment.
▪ She may become more muddled and likely to fall.
▪ She really misses her cat and is determined to go home, and although we
accept that she is not fully able to weigh all the risks involved we have to try to
respect your mother’s strongly held wishes.

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HOW WILL SHE MANAGE? DAUGHTER:
THE STAFF NURSE SAYS HER MEMORY SCORE IS ONLY 5/10.
▪ the score tells us that her memory and orientation are not perfect, but what DOCTOR:
really matters is how much she can do towards looking after herself.
▪ She is walking steadily with her frame, but did find it difficult to make a hot
drink in the kitchen here.
▪ That is why the occupational therapist is planning on taking her on a visit home.
▪ The therapist will put her through her paces in a familiar environment to assess
how much regular care she needs.
▪ I know it’s a long journey, but do you want to take part in the visit to see how she
manages for yourself ?
▪ Would you like me to ask the occupational therapist to contact you?
HOW WILL YOU DECIDE IF SHE CAN MANAGE? DAUGHTER:
▪ that is the purpose of the home visit. DOCTOR:
▪ The occupational therapist will take her home to see how she manages:
whether she can get into the house, how she can move around inside it,
whether she can get herself into and out of bed, whether she can use the toilet
and whether she can use the kettle and the cooker – all the basic things that
someone needs to be able to do to look after themselves.
▪ If she can’t do any of these things, then help would need to be provided to
enable her to get home.
▪ Without the help, she would not be able to go.
I’M SORRY, BUT I DISAGREE. DAUGHTER:
SHE IS MY MOTHER AND SHE CANNOT GO HOME.
▪ of course you know her best and I know this is a difficult situation, but we DOCTOR:
cannot force her to go into a home against her will.
▪ Can I fix an appointment for you to see her consultant?

CASE 39
COLLAPSE
ROLE: you are a junior doctor working on a medicine for the elderly ward.
Mr Davis was admitted to your ward 10 days ago with a dense right hemiparesis, right homonymous
hemianopia and a degree of receptive and expressive dysphasia.
He is 94 years old, but prior to this stroke was living independently at home.
Initially he was treated with intravenous benzylpenicillin, ciprofloxacin and metronidazole for 7 days
for aspiration pneumonia.
He is still on intravenous fluids and has remained drowsy since admission, but he had been more
alert for the last couple of days.
Today his chest sounds worse, his oxygen saturations have dropped and his score on the Glasgow
Coma Scale has fallen again.
The view of the medical and nursing team is that he should be kept comfortable.
His daughter and grand-daughter are upset about his deterioration and the nurse in charge of the
ward asks you to speak to them.
YOUR TASK: to meet the family on the ward and discuss their concerns.
KEY ISSUES TO EXPLORE
▪ This is a major stroke in a very old man.

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▪ Although he was previously fit for his age, his homeostatic reserve will now be limited:
whatever you do he is very likely to die, and you want him to have a dignified death that is not
prolonged by pointless medical intervention.
▪ Key ethical aspects are beneficence, non-maleficence and justice.
▪ Ethical aspects that many doctors still avoid are the actual cost of his treatment if it is futile
and the opportunity cost, eg if he is put in intensive care, this may deny the bed to another.
KEY POINTS TO ESTABLISH
▪ The names of the daughter and grand-daughter: much confusion and many complaints arise
when the notes record ‘discussed with daughter’, and it is only discovered later that there are
three daughters with very different views.
▪ Establish the background: as always, encourage the daughter and grand-daughter to talk first.
▪ This may provide an easier route to delivering your bad news and you will be able to assess
the appropriate level of complexity for your replies.
▪ For example, ask how Mr Davis was coping before admission: even though he was
independent, he might have been struggling with developing dementia, failing vision or a
recent bereavement.
▪ Ask what his views were (‘He was such an independent, outdoor man’).
▪ Ask what their experience on the ward has been so far.
▪ If they have a major concern, however unlikely, about the care (eg ‘He has caught pneumonia
from the man next to him’), they will not be interested in what you have to say until this is
addressed.
▪ Mr Davis is dying and no treatment will prevent this.
▪ Aggressive medical attempts to prolong life would be futile and wrong, and you intend Mr
Davis’ comfort to be the priority.

APPROPRIATE RESPONSES TO LIKELY QUESTIONS

DAD’S NOT SO AWAKE AND HIS CHEST SEEMS REALLY TERRIBLE AGAIN. DAUGHTER:
▪ I’m afraid you are right. DOCTOR:
▪ As you know it was a very big stroke and almost straight away he developed a
chest infection.
▪ We have treated that and his chest improved, but he is certainly very chesty
again today.
▪ He may be getting another infection, or because he cannot move his legs he
may have developed a clot in the leg veins which has gone to the lungs.
WELL, WHAT ARE YOU GOING TO DO? GRAND-DAU
GHTER:
▪ that’s what I wanted to talk to you about. DOCTOR:
▪ Even when your granddad was getting over the first infection there wasn’t
much sign of improvement in his stroke, so there is obviously a lot of damage
to his brain.
▪ It’s disappointing that he has got another problem with his chest so quickly,
but I think this is telling us just how seriously ill he is.
I SUPPOSE YOU WILL JUST GIVE HIM SOME ANTIBIOTICS THEN? DAUGHTER:
▪ treatment with antibiotics usually works only along with other measures such Doctor:
as physiotherapy to clear the chest.

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▪ This would not be very effective because your father cannot work with the
therapist and having physiotherapy – shaking his chest and sucking out his
throat – would almost certainly be uncomfortable or distressing for him,
particularly as we cannot explain to him what we are trying to do.
▪ It is also getting difficult to find a vein for his drip and that is quite
uncomfortable for him as well.
WHAT IF IT’S A CLOT? DAUGHTER:
▪ the only way of being sure of that would be to send your father down to the DOCTOR:
X-ray department for a special scan, but his is too poorly for that at the
moment and there wouldn’t be any point.
▪ If it was a clot, we would not be able to treat it: the treatment for a clot on the
lung is to thin the blood and this would probably cause bleeding into the brain
which would make things even worse.
SO YOU’RE TELLING ME YOU CAN’T DO ANYTHING AND WE JUST HAVE TO WATCH DAUGHTER:
HIM SUFFER UNTIL HE DIES?
▪ I’m sorry, but I think you are right that he is probably going to die. DOCTOR:
▪ If that is going to happen, I don’t think there is anything we can do to change it
and we don’t want to make things more uncomfortable for him.
▪ But we certainly do not want him to suffer: we will move him into a side room
so that you and the rest of the family can come and go as you wish.
▪ The nurses know him well now and they will carry on with his mouth care so
that he doesn’t feel dry and thirsty.
▪ They will also turn him regularly on his special mattress.
▪ If he seems to be in discomfort or any distress, we can give him a little
diamorphine to make sure he is comfortable.
▪ Just occasionally patients surprise us and rally, so we won’t be doing anything
that we can’t change.
▪ But I think we need to make him comfortable now and see how he goes.
▪ Offer tissues, cups of tea, a visit from the chaplain, a chance to pop back to
see the patient later and beds in the hostel if the family are not local.
▪ If things are not going well, do what you should in real life: offer a senior
opinion and propose arrangements to ensure this happens.

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CASE 40
EXPLAINING AN UNCERTAIN OUTCOME
ROLE: you are a junior doctor on the admitting medical team.

Mrs Agnes Smith, a 72-year-old woman, previously well apart from mild hypertension, has been
admitted comatose to the Emergency Department.
A CT scan of her head has shown no abnormality, but her serum sodium is 112 mmol/L.
This is almost certainly caused by the thiazide diuretic that she takes for her high BP, although other
possible causes have not been excluded, and is the only obvious cause for her coma.
The management plan is to give her a controlled infusion of hypertonic saline, with frequent
monitoring of the serum sodium concentration until this is corrected into the mildly hyponatraemic
range.
Her son arrives and is very worried about his mother’s condition.
The staff nurse asks you to explain the situation to him.
YOUR TASK: to explain the management plan and the uncertainty of the prognosis to Mrs Smith’s
son.

KEY ISSUES TO EXPLORE


▪ Although the son will understandably be concerned for the health of his mother, are there any
specific worries or questions that he would like you to address?
▪ Is there a hidden agenda or worry?
▪ For example, is he concerned that she has been confused or depressed and may have
accidentally or deliberately taken an overdose of tablets that has contributed to her condition?
▪ Is he the next of kin, and are there other close relatives or friends who would be appropriate to
speak to?
KEY POINTS TO ESTABLISH
▪ Outline the basis and prognosis of his mother’s condition by explaining the following in simple
language.
o Cause of the problem: a ‘low level of salt (or sodium) in the blood’, which can have
many causes; and that the low salt level can itself cause loss of consciousness, but
that you are also excluding other causes of coma.
o Treatment: that the low salt level can be corrected with a drip and by restricting water
intake.
o Outlook: uncertain. The very low level of sodium can cause irreversible brain damage or

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death, and the longer-term outlook depends on the underlying cause of the condition

APPROPRIATE RESPONSES TO LIKELY QUESTIONS


SON: SO SHE IS GOING TO GET BETTER THEN DOCTOR?
DOCTOR: ▪ I’m not hiding anything when I say I don’t know.
▪ Unfortunately it is very early days and I cannot give a guarantee that she will get
better.
▪ We’re trying to rule out other causes, but we think the reason for her being
unconscious is the very low level of salt in her blood and we’re trying to correct
this.
▪ However, this has to be done slowly and carefully: doing it too rapidly can itself
cause or worsen damage to the brain.
SON: IS SHE GOING TO DIE, OR END UP LIKE A VEGETABLE?
DOCTOR: ▪ I’m afraid that I don’t know.
▪ As you can see, she is unconscious now, which means that her brain has been
badly affected by the problem.
▪ It is possible for people to make a complete recovery from this situation, but that
isn’t certain.
▪ She could die, or could be left with some permanent brain damage.
▪ I’m afraid that we just can’t tell at the moment.
SON: SO WHY IS THE SALT IN HER BLOOD SO LOW?
DOCTOR: ▪ Again we’re not 100% sure.
▪ The most likely reason for it is a reaction to a tablet that she was taking for her
high blood pressure, but there are other causes that we need to check for.
▪ It’s not a common problem, but sometimes some sorts of infection or some
sorts of cancer can cause it.
SON: SO IS IT CANCER THEN?
DOCTOR: ▪ As I’ve said before, we’re not absolutely sure what’s causing the problem.
▪ The most likely thing is a reaction to one of her tablets, so I think that cancer is
unlikely, but at the moment I can’t rule it out and it is one of the things we need to
consider.
▪ Is there something that makes you suspect that your mother may have cancer?
SON: WHY WAS SHE PUT ON A TABLET THAT CAN CAUSE THIS SORT OF PROBLEM?
DOCTOR: ▪ The tablet that she was on is one of the drugs that is most widely used to treat
high blood pressure, and it normally doesn’t cause any serious side effects at all.
▪ However, very rarely it can cause the salt in the blood to drop very low, and that’s
what we think is most likely to have happened in your mother’s case.

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CASE 41
THE POSSIBILITY OF CANCER
ROLE: you are the admitting doctor working on an acute medical ward.

Mrs Harriet Claremont, a 64- year-old woman, has presented with with severe but non-specific
lethargy and fatigue, and is found to have a serum calcium of 3.2 mmol/L.
The initial history and examination fail to provide a clear diagnosis for this.
There are no features to suggest malignancy, but the possibility cannot be excluded.
The patient’s daughter visits the ward wanting to discuss the possible causes of her mother’s
condition with you, and Mrs Claremont gives you permission to talk with her.
She is particularly worried because of the recent demise of her aunt (the patient’s sister) from lung
cancer.
YOUR TASK: to explain what is meant by hypercalcaemia, and to discuss likely investigation and
possible diagnoses.
KEY ISSUES TO EXPLORE
▪ What does the daughter already know, and what are her main concerns?
▪ Ask her to tell you about these before embarking on explanations.
KEY POINTS TO ESTABLISH
Explain the following in simple terms:
• the diagnosis and possible causes of hypercalcaemia;
• that the underlying diagnosis is not certain and that it will not be possible to give a reliable
prognosis until it is, but there is a range of possibilities from the benign to the malignant.

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APPROPRIATE RESPONSES TO LIKELY QUESTIONS
WHAT IS THE ABNORMALITY IN THE BLOOD TESTS? DAUGHTER:
▪ There is an abnormally high level of calcium in the blood, which can cause the DOCTOR:
tiredness and fatigue that your mother is suffering from.
WHAT’S CAUSING THE HIGH CALCIUM? DAUGHTER:
▪ I don’t know at the moment, but there are many possible causes that we need to DOCTOR:
check for.
▪ One of the most common is overactivity of the glands which normally control
the blood calcium level, called parathyroid glands, and this is usually caused by
a small benign tumour that can be removed with a simple operation.
▪ But there are some more worrying possible causes, including some types of
cancer.
CANCER IS THE MOST LIKELY THING, ISN’T IT? DAUGHTER:
▪ No, I’m not sure that it is. DOCTOR:
▪ As I’ve said, it’s certainly a possibility that we need to look for, but I’m not hiding
anything when I say that we don’t know what the cause of the problem is at the
moment.
▪ It could turn out to be a cancer, but it could turn out to be something much
more straightforward.
IF IT IS CANCER, YOU WON’T TELL HER, WILL YOU? DAUGHTER:
▪ I won’t force any information on her that she doesn’t want to know, but I won’t DOCTOR:
keep things from her if she does want to talk about them.
BUT SHE WON’T COPE AT ALL IF YOU TELL HER. DAUGHTER:
HER SISTER HAS JUST DIED FROM LUNG CANCER AND SHE COULDN’T COPE WITH
THAT
▪ I hear what you say and I understand it. DOCTOR:
▪ As I’ve said, I won’t force anything on to her that she doesn’t want to hear, but I
will ask her if she’s got any questions about things, and if she has I will answer
them as simply, honestly and kindly as I can.
▪ But if she doesn’t ask, then I certainly won’t force information on her.

CASE 42
NO MEDICAL CAUSE FOR HIRSUTISM

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ROLE: you are a junior doctor working in the Endocrine Outpatient Clinic.

Miss Irene Harris has come back to the clinic to discuss the results of investigations for hirsutism.
She is 21 years old and has been troubled by mild to moderate hirsutism since menarche: she has
been bleaching or shaving her upper lip weekly and waxing her abdomen and thighs monthly.
She has regular periods.
Her blood tests, including luteinising hormone, follicle-stimulating hormone and testosterone, are all
normal.

YOUR TASK: to explain to the patient that she has idiopathic hirsutism, and that treatment options
include cosmetic hair removal and various tablets, eg Dianette (an oral contraceptive pill, with limited
efficacy for hirsutism, that typically reduces hair growth by one-third).
KEY ISSUES TO EXPLORE
▪ What is the patient’s main worry?
▪ Ask her if she is concerned that she has a serious underlying disorder, in which case the
diagnosis will be a relief, or if she simply wants you to give her a tablet to make things better
for her forthcoming summer holiday, in which case she is likely to be disappointed!
▪ Does she have other concerns?
▪ For example, is she worried about fertility? This is unlikely to be a problem in view of her
regular periods and normal blood tests.
KEY POINTS TO ESTABLISH
▪ Explain the following in simple terms.
▪ Reassure her that there is no sinister underlying pathology: the diagnosis of idiopathic
hirsutism is good news, and no further investigations are needed.
▪ But at the same time remember to be sensitive and ensure that you do not sound as if you are
dismissing any concerns that she might have as no longer being important.
▪ Explain the basis for her condition: she may find it helpful to learn that some of the hair
follicles on her body are simply a little more sensitive to the normal levels of circulating
androgens (which all women have), leading to a coarsening of these hairs.
▪ This is a very common problem, and indeed can be viewed as one end of the normal spectrum
for hair distribution in women.
▪ Emphasise that she is not becoming ‘masculinised’ in any way.
▪ If appropriate, mention that there are significant racial differences in hair biology and that
hirsutism can run in families: she may know relatives who have had similar problems.
▪ Address the patient’s expectations:
▪ while it is important not to minimise symptoms that are troubling a patient, it may be
appropriate to discuss the difference between the ideal woman portrayed by the media and
the biological norm (in terms of body fat and hair distribution).

APPROPRIATE RESPONSES TO LIKELY QUESTIONS

PEOPLE WILL THINK I’M TURNING INTO A MAN. PATIENT:


▪ I can understand why you say that, but it’s not the case. DOCTOR:
▪ You have normal periods and you’re not going to turn into a man at all, but
your body is more sensitive to the normal levels of male hormones that you
and all other women have, and this shows itself in the way that the hair
grows.
IS THIS GOING TO GET WORSE? PATIENT:

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▪ No, that’s unlikely. DOCTOR:
▪ This condition most often causes a reasonably stable level of unwanted
excess hair throughout life, although weight gain can make the situation
worse.
▪ However, it can become more pronounced at the menopause with the
change in balance between male and female sex hormones.
YOU SAID EARLIER ON THAT THIS PROBLEM CAN RUN IN FAMILIES, SO WHY ISN’T PATIENT:
MY SISTER AFFECTED?
▪ It is true that the condition tends to run in families, but different individuals DOCTOR:
are affected to varying degrees, and some not at all, just as some people
with the same parents are taller or shorter or have different hair or eye
colour.
WHY CAN’T YOU GIVE ME A TABLET TO CURE THIS ILLNESS? PATIENT:
▪ It is important to appreciate that this is not an illness, but rather one end of DOCTOR:
the spectrum of body hair growth that is normal for women.
▪ Many women have to use cosmetic hair removal to achieve an appearance
that they are happy with and these remain the mainstay of treatment for
you.
▪ It is important to understand that no tablets are without side effects.
▪ We can give you a tablet that is likely to reduce the hair growth by about a
third, but you are still likely to need local hair removal treatments.
▪ The tablet has a contraceptive action (Dianette), so is not suitable if you
want to get pregnant and has risks associated with other oral
contraceptives, including an increased risk of developing blood clots in the
veins.

CASE 43
A SHORT GIRL WITH NO PERIODS

ROLE: you are a junior doctor working in the Endocrine Outpatient Clinic.
Miss Alison Jackson, aged 17 years, presented to her GP with short stature and primary
amenorrhoea.
Your initial clinical assessment has revealed numerous features (webbed neck and cubitus valgus)
that are suggestive of an underlying diagnosis of Turner’s syndrome.
The GP had already mentioned this as a possibility, and the patient has read up about the condition
on the Internet.
YOUR TASK: to explain the meaning of ‘karyotype analysis’ and to ensure that the patient has an
appropriate understanding of Turner’s syndrome.
KEY ISSUES TO EXPLORE

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▪ What does the patient already know and what are her main concerns?
▪ Has she heard or read about ‘karyotyping’ or ‘chromosome analysis’?
▪ What has she learnt about Turner’s syndrome from discussions with her GP and her reading on
the Internet?
▪ Explore these matters before embarking on explanations.
KEY POINTS TO ESTABLISH
▪ Explain why you (and the GP) believe that the patient might have Turner’s syndrome. Recap the
salient features from the history and examination (and any relevant available investigations).
▪ Emphasise the importance of confirming the diagnosis through biochemical testing and
karyotype (chromosome) analysis.
▪ Explain how studying the chromosome pattern helps to establish the diagnosis.
▪ Briefly mention the associated features of the condition, but try to avoid an over-detailed
discussion at this stage when confirmation of the diagnosis is still awaited.
▪ It is important to point out that not all patients manifest all features of the condition.

APPROPRIATE RESPONSES TO LIKELY QUESTIONS

WHY DO YOU WANT TO CHECK MY CHROMOSOMES? PATIENT:


▪ Because I think it’s likely that you have a condition called Turner’s syndrome, DOCTOR:
and checking your chromosomes is the best way of making this diagnosis.
▪ The chromosomes contain the genetic information that governs how all the
cells and tissues in the body develop.
▪ In Turner’s syndrome there is a distinctive alteration in the chromosome
arrangement – one of the chromosomes called the X chromosome is missing
in some or all of the cells of the body – and this can be easily detected in most
patients by looking at the chromosome pattern in a small number of cells taken
from a simple blood sample.
▪ This test is called chromosome analysis or karyotyping/karyotype analysis.
DO I HAVE TO HAVE THE TEST DONE? PATIENT:
▪ No, you don’t have to have any test done that you don’t want, but I think it would DOCTOR:
be a good idea to do it.
▪ You went to your doctor because you were worried that you hadn’t grown as
much as your friends and that your periods hadn’t started.
▪ If we can find out why this is, then we should be able to help; but if we don’t do
any tests and don’t find out what’s causing the problem, then I’m afraid that
we’re not going to be able do anything about it.
IF YOU FIND THAT I HAVE TURNER’S SYNDROME, DOES IT MEAN THAT I’M NOT A PATIENT:
PROPER WOMAN?
▪ No, it doesn’t mean that at all. DOCTOR:
▪ The absence of one of the X chromosomes, and the impact that this has on
some of the tissues of the body such as the ovaries, is the reason why you
haven’t grown as tall as your friends and have not yet developed fully.
▪ But with the correct hormone replacement treatment we will be able to help you
grow and develop.
WOULD THE TREATMENT MAKE ME ABSOLUTELY NORMAL? PATIENT:
▪ You might not finish up quite as tall as other girls of your age, but remember DOCTOR:
that there’s a lot of variation in the population as a whole, as I’m sure you’re
aware from looking at your friends – some are shorter and some are taller.

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▪ Many women with Turner’s syndrome have similar thoughts/questions about
their femininity, and this has led to the formation of the Turner’s Society, a
patient support group.
▪ I can give you their details if you like.
▪ The society’s view is that women with Turner’s syndrome should have no doubt
about their femininity: physically, behaviourally and sexually.
DO I HAVE LOTS WRONG WITH MY BODY? PATIENT:
ON THE INTERNET I READ ABOUT POSSIBLE HEART, THYROID AND KIDNEY
PROBLEMS WITH TURNER’S SYNDROME.
▪ I think we need to do the chromosome analysis before we say that we’re sure DOCTOR:
that you have Turner’s syndrome, so at this stage I don’t think we should get
into very detailed discussion about other conditions that may be associated
with the syndrome.
▪ But if the diagnosis is confirmed then we will need to talk things through
thoroughly.
▪ However, do remember that although it is true that Turner’s syndrome can be
associated with a variety of conditions that can affect the heart, thyroid and
kidneys, not all patients with Turner’s syndrome are affected by these.

CASE 44
SIMPLE OBESITY, NOT A PROBLEM WITH ‘THE GLANDS’
ROLE: you are a junior doctor working in the Endocrine Outpatient Clinic.

▪ Miss Manju Patel, aged 26 years, was referred by her GP because of concern that there may
be an endocrine cause for her obesity(weight 90 kg, BMI 38 kg/m2).
▪ Her periods are regular.
▪ She is mildly hirsute and has faint striae over her lower abdomen.
▪ Examination is otherwise unremarkable.
▪ Investigations have excluded polycystic ovarian syndrome, hypothyroidism and Cushing’s
syndrome, and the diagnosis is one of ‘simple obesity’.
▪ Both her parents are also obese.
▪ Miss Patel remains convinced that ‘her glands are to blame’ and states that she‘wants
something done about it.’
YOUR TASK: to explain to the patient that no underlying endocrine cause for her obesity has been
identified and to provide advice on weight loss management.
KEY ISSUES TO EXPLORE
▪ In this common scenario, as in others, it is important to allow the patient time to explain her
view of things before launching in with explanations.
▪ Why does she continue to believe that her ‘glands’ are at fault, and which ‘glands’ does she
believe are not working properly?
▪ What is she hoping/expecting the doctor to offer her in terms of treatment?

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KEY POINTS TO ESTABLISH
▪ Explain that there are many different reasons why somebody might become overweight or
obese (see Table 10), but that in most cases it is due to an imbalance between energy intake
and expenditure.
▪ An individual’s genetic make-up can affect their predisposition to weight gain, but
environmental and behavioural factors are equally important in determining whether or not
this occurs.
▪ Emphasise that endocrine causes of weight gain/obesity (eg polycystic ovarian syndrome,
hypothyroidism and Cushing’s syndrome) have been looked for and excluded.
▪ Explain that further medical tests are not required and that attention must now focus on
helping her to lose weight through dietary and lifestyle modifications, supplemented with
pharmacological/surgical interventions where necessary/ appropriate.
APPROPRIATE RESPONSES TO LIKELY QUESTIONS
HOW CAN YOU BE SURE THAT I DON’T HAVE A PROBLEM WITH MY GLANDS? PATIENT:
HAVE YOU CHECKED ALL OF THEM?
▪ No, we haven’t checked all your glands, but we have checked the ones that DOCTOR:
can be relevant to problems with body weight.
▪ In particular we’ve done tests on the thyroid, the ovaries and the adrenal
glands, and we’ve not found any evidence to indicate a specific problem
with any of these.
▪ Are there any other glands that you are worried about specifically?
DOES THIS MEAN THAT YOU THINK THAT I’M FAT JUST BECAUSE I EAT TOO PATIENT:
MUCH, BECAUSE THAT CAN’T BE THE CASE AS I HARDLY EAT ANYTHING?
▪ How heavy a person is depends on the balance between how much energy DOCTOR:
is taken in – how much they eat and drink – and how much energy they
burn – how much exercise they do.
▪ But people are variable: we all know some people who can eat what they
like and stay thin; and we know other people who put on a lot of weight
without eating an enormous amount, just more than their body can burn off.
▪ I know that life’s unfair, and you may not be eating more than some thin
people do, but you are clearly eating more than your body can burn off.
SO ARE YOU TELLING ME THAT I JUST HAVE TO GO ON A DIET AND JOIN A GYM? PATIENT:
▪ Those are easy things to say and they might do some good, but as I’m sure DOCTOR:
you know it’s often not as straightforward as that.
▪ I’d like to offer some help if you’d like to have some: I would like to refer you
to a dietitian who will be able to provide you with information on the calorie
content of different foods and how to achieve a healthy-balanced diet that
will help you to lose weight; and I think that it would also be very important
for you to undertake regular exercise.
▪ This could begin with taking a brisk walk each day or swimming, and
doesn’t mean that you have to join a gym! But if you would like to take up
regular supervised exercise, then many gyms can help out with this.
▪ It is also important to alter your day-to-day routine, for example use the
stairs rather than taking the lift, walk or cycle to work rather than using the
car, all these things can help.
WHAT IF I STILL DO NOT LOSE WEIGHT DESPITE DOING EVERYTHING THAT YOU PATIENT:
ARE SAYING.
WOULD YOU CHECK MY GLANDS AGAIN?

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▪ I am confident that if you do manage to alter your diet and lifestyle to DOCTOR:
achieve a situation where you are expending more calories than you are
taking in, then you will lose weight.
▪ If this is proving difficult to achieve, then we could consider prescribing one
or other tablets to try to help with this, but I don’t think we will need to
reinvestigate your ‘glands’ unless there are some new symptoms or
changes to indicate that we should do so.
▪ The glands aren’t the problem, and I don’t think it’s going to be helpful to
keep focusing on them.
WHY CAN’T YOU GIVE ME A TABLET NOW OR JUST SEND ME FOR AN OPERATION? PATIENT:
▪ There are three reasons for not racing into tablets or operations straight DOCTOR:
away.
▪ Firstly, adjusting your diet and exercise are the most appropriate and logical
first steps to tackle weight gain in this situation because they directly
address the underlying cause of the problem.
▪ Secondly, tablets or surgery rarely work in isolation, and lifestyle adaptation
is an important component if these are to succeed.
▪ Thirdly, tablets and surgery can both have side effects and complications,
so we should start with the simple things: diet and exercise.

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CASE 45
I DON’T WANT TO TAKE THE TABLETS

ROLE: you are a junior doctor working in the Endocrine Outpatient Clinic.

Mrs Isabel Bur ns, a 35-year-old woman recently diagnosed with primary adrenal insufficiency
(Addison’s disease), has raised several concerns over her lifelong requirement for steroid treatment.
She is particularly worried about weight gain.

YOUR TASK: to explain the rationale behind physiological glucocorticoid replacment.


KEY ISSUES TO EXPLORE
▪ Patient education is extremely important for those with adrenal insufficiency: this woman will
have to assume responsibility for a life maintaining therapy that requires adjustment at times
of stress.
▪ But before embarking on a worthy lecture, encourage her to express her concerns.
▪ Why is she worried about taking steroids?
▪ Has she ever taken them in the past, or known anyone else who has?
▪ And did they have problems?
KEY POINTS TO ESTABLISH
▪ Explain the following in straightforward terms.
▪ Physiological versus pharmacological steroid treatment: it is important for the patient to
realise that steroid treatment in this setting is to replace what is normally produced by the
body and not to administer a pharmacological dose, as would be required for treating
inflammatory conditions such as rheumatoid arthritis or asthma.
▪ A physiological dose is most unlikely to have side effects.
▪ The importance of compliance: she requires lifelong steroid replacement therapy.
▪ Failure to take an appropriate dose leaves her vulnerable to adrenal crises, which are
potentially life threatening.
▪ It is also important to carry a steroid card or bracelet so that in the event of being unable to
communicate (eg if involved in a car accident) appropriate medical treatment can be given
without delay.

APPROPRIATE RESPONSES TO LIKELY QUESTIONS


WHY DO I NEED STEROIDS ANYWAY? PATIENT:
▪ Steroids are essential for life: everyone’s body produces steroids, and the most DOCTOR:
important one is cortisol.
▪ The condition that you have destroys the glands that make this – the adrenal
glands that sit just above the kidney and release cortisol into the bloodstream.
▪ This process is important for controlling many systems in the body, including
those that regulate blood pressure and response to stress. Without cortisol

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your body cannot respond properly to stress: your blood pressure can fall, you
may suddenly become very unwell and in rare cases the problem can be fatal.
▪ So steroids are important, they’re not something that you or I could just decide
to do without.
SOME OF MY FRIENDS HAVE BEEN ON STEROIDS AND HAVE PUT ON A HUGE PATIENT:
AMOUNT OF WEIGHT.
WILL THIS HAPPEN TO ME?
▪ No, it won’t. DOCTOR:
▪ They were almost certainly being given steroids as a drug to treat an illness:
asthma, arthritis – do you know what it was? The aim of treating you with
steroid is quite different.
▪ Everyone’s body normally makes some steroid, but in you this doesn’t happen
because the adrenal glands are damaged.
▪ So what we’re aiming to do is to give you back only the amount of steroid that
your body would produce naturally: we’re not intending to give you any extra.
▪ Therefore, we don’t think that you should suffer excess weight gain as a result
of this steroid treatment.
I DON’T LIKE THE IDEA OF WEARING A MEDIC-ALERT BRACELET. PATIENT:
I DON’T WANT TO ADVERTISE THAT I’VE GOT A PROBLEM.
I DON’T HAVE TO WEAR ONE, DO I?
▪ I can understand what you’re saying. DOCTOR:
▪ The important thing is that, if you were to become unwell you might not be
able to tell a doctor looking after you about the fact that you had Addison’s
disease and needed steroids.
▪ So you need to carry something on you at all times that would give the doctor
this information.
▪ Some people carry a steroid card in their purse or handbag, some people wear
a Medic-Alert bracelet or necklace, but it’s important that you carry something.
I’M CONFUSED ABOUT THIS BUSINESS OF INCREASING THE DOSE WHEN I’M ILL. PATIENT:
WHAT’S ALL THAT ABOUT?
▪ When someone gets ill their body naturally makes more steroid. DOCTOR:
▪ However, yours can’t do that, so the simple rule is that you take double the
normal dose if you feel unwell and go back to the normal dose as soon as you
feel better.
▪ There are no side effects from a few days of double-dose steroid, so if in
doubt just increase the dose.
▪ If you’re back to normal the following day, then cut back the dose to normal.

CASE 46
LIMITATION OF MANAGEMENT

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ROLE: you are a junior doctor working on a general medical take.

Mrs Agnes Keane, a 93-year-old woman resident in a nursing home, presents with a massive
haematemesis on a background of long-standing heart failure and chronic renal failure.
She requires full care in the home for all activities of daily living, both because of her heart disease
and her advanced dementia.
On arrival in the Medical Assessment Unit she is unresponsive, has an unrecordable BP and is pale,
with fresh blood around her mouth and melaena stool evident in the bed.
An intravenous drip has been put in and resuscitation with colloid commenced by the Emergency
Department staff, who ask you to assess her.
You contact the on-call medical consultant who decides that Mrs Keane should not undergo further
investigation or treatment but should be kept comfortable.
YOUR TASK:
to explain the situation and management plan to Mrs Keane’s daughter.
KEY ISSUES TO EXPLORE
▪ Begin by finding out the daughter’s understanding of her mother’s condition: although the
situation seems clear-cut, it cannot safely be assumed that the daughter will recognise this.
▪ Therefore, you need to explore the daughter’s expectations of what the outcome is likely to be,
and also what she believes her mother would want with regard to treatment and investigation.
KEY POINTS TO ESTABLISH
▪ That Mrs Keane is dying.
▪ The inappropriateness of aggressive medical interventions in the context of a patient who is
dying.
▪ That you will listen to the daughter’s concerns, but that you will not ask her to make decisions
about offering or declining particular treatments, which are medical decisions.
▪ That doctors are not obliged to provide treatments that they consider to be futile.
APPROPRIATE RESPONSES TO LIKELY QUESTIONS

WHY IS MY MOTHER BLEEDING FROM HER MOUTH? DAUGHTER:


▪ I’m afraid that we don’t know for certain. DOCTOR:
▪ The blood is coming from her gut, and it is most likely that she has developed
an ulcer in her stomach or the top of her small bowel: this has probably
developed over a small blood vessel which is now bleeding.
WHY IS MY MOTHER UNCONSCIOUS? DAUGHTER:
▪ she has bled so much that her blood pressure has dropped very low. DOCTOR:
▪ This means that blood is not getting to her brain properly.
HOW ARE YOU GOING TO STOP THE BLEEDING? DAUGHTER:
▪ there isn’t an easy way to do this, and we don’t think it would be right to put DOCTOR:
her through a lot of investigations and treatments that wouldn’t do any good
and which would cause her distress.
▪ The most important thing is that we make sure that she is comfortable.
SO ARE YOU JUST GOING TO LET HER BLEED TO DEATH? DAUGHTER:
▪ I’m sorry, but I’m afraid that your mother is dying. DOCTOR:
▪ As you know, she has problems with a poor heart, poor kidneys and her mind
has gone with dementia, and in the situation she is in now she would be very
unlikely to survive for more than a short while whatever we did.
▪ We are going to make sure that she is comfortable: it would be wrong for us

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to prolong her dying.
BUT I KNOW THAT YOU CAN DO TELESCOPE TESTS. DAUGHTER:
WOULDN’T IT BE RIGHT TO FIND OUT WHAT IS WRONG FOR SURE?
▪ at the moment it wouldn’t be safe to have a look into your mother’s stomach DOCTOR:
with a telescope.
▪ She is unconscious and could not protect her airway, and her blood pressure
is too low for the heart to take the strain.
▪ If we were to try to do a telescope test we would have to begin by putting her
on a breathing machine and giving her a lot of fluid to bring up her blood
pressure.
▪ Even if we did that it wouldn’t be guaranteed that the test could be done
safely, or that it would be able to find out what’s going on.
▪ It really wouldn’t be kind or sensible to do this.
HAVE YOU TALKED TO YOUR CONSULTANT ABOUT THIS? DAUGHTER:
▪ yes I have, and what I’m explaining to you is what he has asked me to say. DOCTOR:
▪ If you want to speak to him directly then I can try to arrange this.
▪ Would you like me to?
HOW LONG WILL IT BE BEFORE SHE DIES? DAUGHTER:
▪ I cannot say for sure, not because I’m hiding anything but because I don’t DOCTOR:
know.
▪ She has bled a lot and her blood pressure is very low.
▪ She could die very soon – over the next few minutes – or it could be longer if
the bleeding slows down, which it can sometimes do.
ARE YOU SURE THAT SHE’S NOT IN ANY DISTRESS? DAUGHTER:
▪ yes, she isn’t responding at all at the moment. DOCTOR:
▪ She is unconscious and can’t feel anything.
▪ But if she did seem to become distressed, if she seemed to be in any pain,
then we would give her something to make sure she was comfortable.

CASE 47
LIMITATION OF INVESTIGATION
ROLE: you are a junior doctor working in a gastroenterology outpatient clinic.

Mr David Chan is a 25-year-old man who has experienced symptoms of irritable bowel syndrome for
8 years and has been extensively investigated previously.
He is convinced that his symptoms have worsened considerably and is particularly worried about a
recent bout of constipation because he thinks it might indicate cancer.
A physical examination is unremarkable and routine tests such as FBC are entirely normal.
He wishes to have a colonoscopy, but the consultant who saw him previously said that this was not
indicated and declined to perform the investigation.
YOUR TASK:
to explain to the patient the reasons why the test is not indicated nor on offer, and what the nature of

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irritable bowel syndrome is.
KEY ISSUES TO EXPLORE
▪ This is clearly going to be a difficult discussion.
▪ Begin by asking the patient to explain to you what he thinks is causing his problems, and what
his fears and concerns are.
▪ Constipation is a common symptom in irritable bowel syndrome (IBS), so is there any
particular reason why he is worried about cancer now?
KEY POINTS TO ESTABLISH
▪ You recognise that IBS causes distressing symptoms, but it is benign in the long term, ie it
does not lead to excess mortality or predispose to developing other conditions such as
colorectal cancer and inflammatory bowel disease.
▪ Decisions about investigations depend on balancing benefits and risks, and colonoscopy is
not without hazards.
▪ Doctors are not obliged to offer tests or treatments that they do not think are clinically
indicated.
APPROPRIATE RESPONSES TO LIKELY QUESTIONS
PATIENT: HOW CAN YOU BE SURE THAT I DON’T HAVE CANCER?
DOCTOR: ▪ even if you do every test possible, it cannot be proved that cancer is impossible.
▪ But everything we know about you, including the fact that your symptoms have
been going on for a long time, that everything is as it should be on examination
and that routine blood tests are normal, are reassuring that you do not have a
serious disorder such as cancer.
PATIENT: WHY DON’T YOU JUST ORGANISE A COLONOSCOPY?
I’LL FEEL BETTER, AND YOU CAN GET ON WITH YOUR OTHER WORK.
DOCTOR: ▪ no, this wouldn’t be the right thing to do.
▪ Deciding about tests or procedures is a matter of balancing benefits and risks,
and colonoscopy does carry a small risk of serious complications, such as
perforation of the bowel.
▪ It wouldn’t be right to put you or any patient at risk of this if there wasn’t a
proper reason for doing the test.
PATIENT: YOU’RE JUST TRYING TO SAVE MONEY BY NOT DOING THE TEST, AREN’T YOU?
DOCTOR: ▪ no, that’s not the main reason for me saying that we won’t do the test.
▪ The main reason is because the test stands more chance of doing you harm
than doing you good, although I agree that it isn’t right to spend healthcare
money on something that isn’t justified.
PATIENT: I HAVE A RIGHT TO HAVE THE TEST, HAVEN’T I?
DOCTOR: ▪ no, that’s not true.
▪ No patient has a right to a test or a treatment that is not clinically indicated.
▪ You do have a right to have a second opinion if you want it, and if you’d like me
or your GP to recommend someone then we can do, but you can’t insist that we
do a test that we don’t think is justified.
PATIENT: YOU THINK I’M JUST A WHINGER, DON’T YOU?
DOCTOR: ▪ no, that’s not what I’ve said and it’s not what I think.
▪ There is no doubt that the symptoms of irritable bowel syndrome exist and can
be really severe and worrying; and I and the other doctors in the clinic will help
as much as we can to control them.
▪ However, we won’t do things that we don’t think will help.

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CASE 48
A PATIENT WHO DOES NOT WANT TO GIVE A HISTORY
ROLE: you are a junior doctor working on a general medical ward.

Ms Cathy Evans, a 34-year-old woman who says that she has recently moved to the area and is not
registered with a GP, is admitted with episodic severe abdominal pain.
At times this seems to be excruciating, such that she rolls around in agony and calls out for
pethidine, but between attacks she seems well and appears unconcerned about her condition.
Examination reveals two laparotomy scars, the indications for which are unclear.
Routine laboratory tests and plain radiographs are normal.
She has been on the ward for 3 days and matters do not seem to be improving.
It is the opinion of your consultant that the woman has factitious abdominal pain and that no further
investigations should be performed.
Ms Evans is unhappy with the lack of investigation since admission and has demanded to see
someone to discuss this.
Your consultant has asked you to get more information regarding her background history, which Ms
Evans has been unwilling to provide.
YOUR TASK:
to explain to Ms Evans that further details of her medical background are required and that further

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investigation is not indicated.
KEY ISSUES TO EXPLORE
▪ This is clearly going to be a difficult discussion.
▪ Begin by asking the patient to explain to you what she thinks is causing her pain and what she
thinks should be done about it.
▪ Use comments made by her, which she will almost certainly intend as justification for
investigation, as reasons for needing precise details of her past medical history.
KEY POINTS TO ESTABLISH
▪ Reassure her that the progress of her illness and the results of investigation do not indicate
serious intra-abdominal pathology.
▪ Be firm and persistent in requesting specific details: when, which hospital and which doctor,
etc? But do not become confrontational.
▪ Doctors are not obliged to offer tests or treatments that they do not think are clinically
indicated.

APPROPRIATE RESPONSES TO LIKELY QUESTIONS


PATIENT: YOU HAVEN’T FOUND OUT WHAT’S WRONG WITH ME YET? DON’T I NEED A CT SCAN?
DOCTOR: ▪ you are right that we haven’t got to the bottom of things yet, but the tests that
we have done have not revealed anything worrying, which is good news.
▪ We don’t think that a CT scan will add anything useful at this time, but we do
need to find out as much as we can about the previous problems you’ve had in
your abdomen, just in case these are relevant to what’s happening now.
PATIENT: MY PAST ISN’T RELEVANT, WHY DO I HAVE TO TELL YOU ABOUT IT?
DOCTOR: ▪ you don’t have to tell me anything that you don’t want to, but it is very difficult
for us to manage you safely without knowing about your past medical history, in
particular about the operations that you have had.
▪ These details may help us get to the bottom of your current problems and we
could miss things if we do not have all the information.
▪ Can you remember in which hospital you had them done, and when?
PATIENT: WHAT IS CAUSING THE PAIN?
DOCTOR: ▪ we’re not sure, but we don’t think there is a serious problem in your abdomen.
▪ Pain can be caused by a number of things, not all of which can be
demonstrated on blood or X-ray tests.
PATIENT: DO YOU THINK I’M MAD?
DOCTOR: ▪ no, I haven’t said that.
▪ I don’t know what’s causing your pain, but you are right that psychological
problems can sometimes present in this way and are a potential cause for
stomach pain.

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▪They do need to be considered in order to enable us to get expert help if this is
indeed the case.
PATIENT: WHY CAN’T I JUST HAVE PETHIDINE TO MAKE THE PAIN GO AWAY?
DOCTOR: ▪ we do not think that giving you lots of pethidine to mask the problem is going to
help us get you better.
▪ But if the pain is continuing to be troublesome, then we would be more than
happy to obtain specialist advice from the doctors in the pain clinic.

CASE 49
COLD FINGERS AND DIFFICULTY SWALLOWING
ROLE: You are a junior doctor in a rheumatology outpatient clinic.
Mrs Hope Adams, aged 50 years, has recently been referred to the outpatient clinic with cold fingers.
The clinical suspicion from the initial consultation that she has secondary Raynaud’s in association
with systemic sclerosis has been supported by the detection of anti-centromere antibodies in her
blood.
She tells you that, despite her doctor’s concern, the Raynaud’s does not trouble her too much and she
can control her symptoms by avoiding cold weather and wearing gloves.
YOUR TASK: To explain to Mrs Adams the diagnosis of systemic sclerosis, including the uncertain
prognosis and lack of curative treatment.
KEY ISSUES TO EXPLORE
▪ How does she currently view her problems?
▪ Does she appreciate that she may have a serious chronic condition, and that the disease may
progress beyond the symptoms of her Raynaud’s?
▪ Approach this by asking what she was told at the last clinic appointment: was it mentioned
that her cold fingers could be a feature of a more widespread disease?
▪ This is a ‘warning shot’ before explaining the diagnosis.
KEY POINTS TO ESTABLISH
▪ Tests have suggested that she may develop more than cold fingers in the future: they are
associated with a disease called systemic sclerosis, or scleroderma, which means ‘hard skin’.
▪ In this condition the skin, usually of the hands and feet, swells and thickens and becomes
stiff, tight and shiny.
▪ This ‘hardening’ or fibrosis can also affect internal organs, which can cause a variety of
symptoms depending on which organ is involved.
▪ As and when other symptoms develop, they can be addressed and treated.
▪ However, there is no effective treatment for the underlying condition.
▪ Regular reviews are required to direct symptomatic treatments, anticipate problems with
screening tests and provide support.

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▪ If the patient does develop other problems, referral to a regional centre with a relative special
interest may be appropriate.

APPROPRIATE RESPONSES TO LIKELY QUESTIONS


I FEEL COMPLETELY WELL OTHER THAN THE COLD FINGERS. PATIENT:
WHY DO YOU THINK I HAVE ANYTHING MORE SERIOUS THAN COLD FINGERS?
▪ that’s a good question: it’s because of the blood tests. DOCTOR:
▪ They show that you have an antibody that is linked with a condition called
scleroderma, and it is common for people with this condition to have cold
hands – Raynaud’s – for many years before they develop skin thickening or
any other problems.
SO WHAT WILL SCLERODERMA DO TO ME? PATIENT:
▪ I’m afraid that I cannot say for certain, not because I’m hiding anything, but DOCTOR:
because I don’t know.
▪ Sometimes it just causes very slow thickening of the skin, especially of the
hands and feet.
▪ But sometimes it causes thickening of the tissues of internal organs, and that
can lead to a variety of problems.
WHAT SORT OF INTERNAL PROBLEMS CAN SCLERODERMA CAUSE? PATIENT:
▪ I don’t want to cause you unnecessary concern because all these things DOCTOR:
certainly don’t happen to every patient, but it can cause problems with the gut,
particularly difficulty with swallowing, a variety of problems with the lungs, and
problems with the kidneys, including very high blood pressure.
I HAVE NEVER HEARD OF THIS DISEASE. PATIENT:
HOW CAN I FIND OUT MORE?
▪ I can give you a leaflet on scleroderma today, and also the contact details for DOCTOR:
the Raynaud’s and Scleroderma Association.
WHAT CAN YOU DO IF THE SCLERODERMA STARTS CAUSING SERIOUS PROBLEMS? PATIENT:
▪ I’m afraid that we don’t have any good treatment that will cure the DOCTOR:
scleroderma: we don’t have anything that will make it go away, but what we
can do is to help the problems that it causes.
▪ For instance, if it causes problems with indigestion or swallowing then there
are tablets that we can recommend – strong anti-indigestion tablets – that
can help.
▪ If it causes problems with your blood pressure, then it’s important to try to
control this very carefully to prevent serious complications.
IF YOU CAN’T TREAT THIS DISEASE, THEN WHY ARE YOU TELLING ME ABOUT IT? PATIENT:
▪ as I said, we don’t have any treatment that will cure scleroderma, but we can DOCTOR:
do things that will help.
▪ By monitoring you in clinic we can try to pick up any problems early on, rather
than waiting until things have got really bad.
▪ For instance, we would keep a careful check on your blood pressure and your
lungs, and we would recommend treatment if problems were developing.

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▪ Good treatment of blood pressure would be very important in cutting down the
chances of you developing kidney failure, or other problems.

CASE 50
BACK PAIN
ROLE: you are a junior doctor working on a general medical ward.
You have admitted a 58-year-old woman for urgent investigation.
She has a 2-week history of low back pain which is now keeping her awake at night.
Over the past 2 days she has noticed progressive numbness and weakness of both legs, and also
sphincteric weakness.
She had breast cancer with axillary node involvement 4 years ago, but was told at her last outpatient
appointment in the oncology clinic 6 months ago that she was‘fine’.
On examination she has bilateral lower limb sensory impairment and lower motor neuron weakness.
A plain radiograph of the spine shows at least one suspicious lesion.
YOUR TASK:
to explain to her that she has cord compression of uncertain cause but with a strong suspicion of
malignancy.
The plan will be for her to have MRI of the spine and that surgery will probably be recommended, but
that this will not be curative.

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KEY ISSUES TO EXPLORE
Your discussion with the patient should cover the following areas:
• her understanding of the problem;
• your explanation of her symptoms;
• the probable underlying cause;
• the treatments available;
• the likely prognosis.
KEY POINTS TO ESTABLISH
• That there is a problem with the patient’s spine: it is pressing on her spinal cord and causing a
blockage of the nerve signals to the lower half of her body.
• That this is a serious problem, probably related to her breast cancer, which needs urgent
investigation and may require surgical intervention.
• That, even in the worst case, there will always be support and a plan of management.
In routine clinical practice (and in PACES, although the offer will inevitably be declined) encourage
the presence of a close friend or relative if the patient wishes it.
As well as providing support, this will spare the patient the necessity of repeating the explanation and
may improve her overall understanding of the problem.

APPROPRIATE RESPONSES TO LIKELY QUESTIONS


IT’S NOT THE BREAST CANCER COME BACK, IS IT? PATIENT:
▪ I don’t know, but I’m afraid that there is a good chance that it could be the DOCTOR:
cancer.
▪ We won’t know for certain until we have done some tests.
▪ We’ll start off with a scan, an MRI scan, of the spine and then probably
perform an operation to relieve any pressure on the spine and take samples
for analysis.
▪ If it is the cancer, we will arrange for you to see the cancer specialist to talk
about further treatment.
BUT AT THE CLINIC A FEW MONTHS AGO, THE ONCOLOGIST TOLD ME THAT PATIENT:
EVERYTHING WAS FINE.
▪ I know, because at that time you hadn’t got any back pain or any problems DOCTOR:
with your legs.
▪ If this is the cancer coming back, then it seems as though that’s happened
just in the last few months.
IF THE ONCOLOGIST HAD DONE A SCAN OF MY BACK WHEN I SAW THEM IN THE PATIENT:
CLINIC A FEW MONTHS AGO, WOULD THEY HAVE FOUND ANYTHING?
▪ that’s a good question, but I’m afraid that I don’t know the answer. DOCTOR:
▪ Scans of the spine aren’t organised as a routine, only if there seems to be a
problem.
▪ However, this is something that you could discuss with the oncologists if and
when you see them.
I’M AFRAID TO HAVE SURGERY IN CASE IT MAKES THINGS WORSE. PATIENT:
ARE THERE ANY ALTERNATIVES?
▪ you’re right in saying that all surgery has risks, but this is not something DOCTOR:
we’re going to race into.
▪ The surgeons will look at your scans very carefully and will discuss things

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with you before you make the final decision.
▪ They will only recommend going ahead if they agree that there is a good
chance of success.
▪ If you didn’t have surgery, your legs might get worse and it would be difficult
to know what was causing the problem or how to treat it.
▪ Is there anything in particular about the surgery that is worrying you?
IF IT’S THE CANCER, WILL THEY BE ABLE TO REMOVE IT DURING THE OPERATION? PATIENT:
▪ if it is possible to remove it, then the surgeons would do so. DOCTOR:
▪ However, trying to remove the whole tumour may well damage your spinal
cord so it’s likely that the surgeons will just take enough to relieve any
pressure.
▪ If further treatment is necessary, then radiotherapy treatment or medication
will probably be recommended, but this is something on which the
oncologists would advise.
DOES THIS MEAN THAT I CAN’T BE CURED, THAT I HAVE TERMINAL CANCER? PATIENT:
▪ if it is cancer, then you are right in thinking that we probably won’t be able to DOCTOR:
get rid of it completely.
▪ But having said that, there are treatments that can work pretty well and it is
possible for some people to live a relatively healthy and normal life for some
time, even though the cancer is not completely removed.
FURTHER COMMENTS
▪ It is important that you are realistic in your explanations.
▪ This patient will undoubtedly need to have trust and confidence in her medical team in the
future.
▪ Although it is important to be as positive as you reasonably can be in your attitude, a falsely
over-optimistic assessment at this stage is likely to result in increased distress and loss of
trust in the medical team in the future.

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CASE 51
WIDESPREAD PAIN
ROLE: you are a junior doctor in a rheumatology outpatient clinic.

You are seeing a 38-year-old woman who is attending the clinic for her first follow-up appointment.
She was first seen in the clinic 6 weeks ago (by the consultant), when she gave a 3-year history of
widespread pain, profound fatigue and poor quality sleep.
These symptoms were associated with significant disability, and she reported spending much of her
day in bed and being heavily dependent on her family.
The notes record that she was ‘sad, withdrawn and angry’.
Examination revealed very widespread tenderness with numerous tender ‘trigger points’, but
movement of her joints was unrestricted and no neurological abnormality could be detected.
The consultant felt that a diagnosis of fibromyalgia was likely, with some evidence of associated
depression. Various investigations including FBC, erythrocyte sedimentation rate, C-reactive protein,
bone/liver/ kidney/muscle biochemistry, thyroid function tests, a screen for autoimmune/vasculitic
disease and a CXR were performed and all were normal.
YOUR TASK: to explain the diagnosis of fibromyalgia to the patient and suggest a graded exercise
programme, and also the possible benefits of treatment for depression.

KEY ISSUES TO EXPLORE


▪ This consultation would be likely to be difficult, even for an experienced clinician.
▪ It is important to:
find out what the patient thinks is causing her problems and what her expectations are –
discussions are likely to be easier if you are aware of the patient’s perspective;
pursue the role that depression and other psychological factors might be playing in the illness.
KEY POINTS TO ESTABLISH
▪ It is essential to establish an atmosphere of trust, taking the patient’s physical symptoms
seriously and acknowledging their reality.
▪ Explain fibromyalgia as a pattern of muscular pain that can be severe and distressing, but
which is not associated with any tissue damage.
▪ Explain that factors such as sleep disturbance, loss of physical fitness (conditioning) and low
mood can perpetuate the pain and make it worse.
▪ Some patients find it difficult to accept that depression can cause pain, but most will see how
pain and sleep disturbance can cause depression.
▪ It is rarely productive to get drawn into a ‘chicken or egg’ argument about pain and depression,
and it is usually easier and more helpful to explain how vicious circles between these factors
can worsen the pain (see Fig. 23), viewing low mood as a practical problem to be solved in
helping to overcome the pain.
▪ Explain that treatment is not easy and that a complete, rapid cure is unlikely, but also that
addressing the perpetuating factors can improve function and quality of life for most patients.

APPROPRIATE RESPONSES TO LIKELY QUESTIONS

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YOU ARE SAYING ALL THE TESTS ARE NORMAL AND THAT THERE IS NOTHING PATIENT:
WRONG WITH MY MUSCLES.
ARE YOU SAYING IT IS ALL IN MY MIND?
▪ no, your pain is real and is clearly causing you distress and affecting your DOCTOR:
life.
▪ Many kinds of rheumatic pain do not lead to changes in the blood or
abnormalities on X-rays.
▪ Nevertheless, it is good that fibromyalgia is not associated with any
long-term damage to the tissues.
I DON’T SEE HOW I CAN DO MORE EXERCISE WHEN EXERCISE JUST MAKES THE PATIENT:
PAIN WORSE.
▪ this is a very common concern for people with fibromyalgia, because Doctor:
exercise can certainly make the pain and tiredness worse.
▪ Nevertheless, we know that graded exercise programmes are one of the
most helpful treatments for patients with fibromyalgia.
▪ The key thing is to approach exercise in the right way, and this usually
needs help from a physiotherapist.
▪ You need to start with an amount of exercise that you can cope with
easily, repeat this regularly, and just gradually increase the amount you are
doing.
▪ You will only improve if you are able to exercise three times a week or
more.
▪ At first the exercise will cause some discomfort, but if you are able to
come back and do the same again within a day or two, then this is fine.
▪ However, if you get so much pain after exercise that you cannot do
anything for a week, then you have started at too high a level.
I KNOW THAT AMITRIPTYLINE IS AN ANTIDEPRESSANT. PATIENT:
ARE YOU SUGGESTING THAT I TAKE IT BECAUSE YOU THINK MY MAIN
PROBLEM IS DEPRESSION?
▪ you are right that amitriptyline is an antidepressant, but low doses of DOCTOR:
amitriptyline and similar drugs are often used in the treatment of
long-standing pain, particularly when the pain disturbs sleep.
▪ The doses used to manage pain are much lower than those used in cases
of depression.
▪ I’m suggesting that you take it simply because I think it might help.
DO YOU THINK MY MAIN PROBLEM IS DEPRESSION? PATIENT:
▪ I honestly find it very difficult to know. DOCTOR:
▪ For obvious reasons, people with painful conditions often become
depressed and depression makes any sort of pain worse.
▪ Treating depression can sometimes be easier than treating pain and it can
certainly do a lot to improve your quality of life.
IF I TAKE AMITRIPTYLINE I’LL BECOME ADDICTED TO IT AND I’LL GET SIDE PATIENT:
EFFECTS, WON’T I?
▪ no, it isn’t addictive. DOCTOR:
▪ It’s generally safe and well tolerated, although it can cause morning
drowsiness in some people, especially at the beginning of treatment.
WHAT ABOUT MY OTHER PROBLEMS WITH IRRITABLE BOWELS? PATIENT:

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HOW WILL THEY BE AFFECTED BY YOUR TREATMENTS?
LOTS OF TABLETS UPSET MY STOMACH.
▪ people with fibromyalgia often have a lot of pain in other parts of their DOCTOR:
bodies, and irritable bowel syndrome is very common.
▪ In most cases treatments for fibromyalgia, such as amitriptyline, tend to
improve irritable bowel syndrome.
IT ISN’T JUST THE PAIN, THE FATIGUE IS JUST AS BAD. PATIENT:
WHY AM I SO TIRED?
▪ tiredness is one of the most distressing symptoms in fibromyalgia, and is DOCTOR:
also a big problem in many other painful conditions.
▪ One of the most important causes of the tiredness is sleep disturbances
due to pain, and these often improve with drugs such as amitriptyline.

CASE 52
EXPLAIN A RECOMMENDATION TO START A DISEASE-MODIFYING
ANTIRHEUMATIC DRUG

ROLE: you are a junior doctor in a rheumatology outpatient clinic.

Mrs Susan Terrell, a 40-year-old secretary, has recently been diagnosed with erosive rheumatoid
arthritis after she presented with a 3-month history of disabling joint pains affecting her wrists and
fingers.
She has a strongly positive rheumatoid factor and has had a persistently elevated serum C-reactive
protein of 40–75 mg/L since presentation, both of which are adverse prognostic factors.
Although it has been explained to her that treatment with a disease-modifying antirheumatic drug
(methotrexate) is her best hope of preserving joint function in the long term, she is unconvinced of
the need to start treatment with this drug at this juncture on account of its possible adverse effects.

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YOUR TASK:
to explain to Mrs Terrell why it is in her best interests to take methotrexate.
KEY ISSUES TO EXPLORE
▪ The decision whether to take any drug should depend on the balance of benefits and risks.
▪ Anxiety about drug-induced adverse effects is entirely understandable, and methotrexate can
certainly be toxic, but the key issues to explore here are the patient’s perceptions of the
benefits and risks to her.
KEY POINTS TO ESTABLISH
▪ Do not be dismissive of the patient’s concerns: recognise her anxiety regarding the impact of
the diagnosis and what the future might hold.
▪ Explain the reasoning behind the recommendation to commence methotrexate rather than use
symptomatic treatments alone, ie she has active disease with adverse prognostic indices
comprising radiological evidence of joint erosions coupled with a persistently elevated
C-reactive protein and a positive rheumatoid factor.
▪ Emphasise that the risk–benefit ratio of treatment in this situation is heavily tilted towards
treatment.
▪ Explain the potential long-term consequences of not undertaking treatment with a
diseasemodifying antirheumatic drug.
▪ Offer to introduce her to a clinical nurse specialist in rheumatology for more detailed
discussion.
APPROPRIATE RESPONSES TO LIKELY QUESTIONS
HOW CONFIDENT ARE YOU THAT METHOTREXATE WILL NOT CAUSE ME ANY PATIENT:
PROBLEMS?
▪ as you know, it’s impossible to guarantee that any drug will not cause DOCTOR:
problems.
▪ Deciding whether or not to recommend any drug is always a matter of
balancing benefits and risks, but most people who take methotrexate do not
get any problems with it and it’s a very effective drug for treating rheumatoid
arthritis in many cases.
BUT HOW MANY PEOPLE GET PROBLEMS WITH IT? PATIENT:
▪ adverse effects such as nausea, loss of appetite and diarrhoea occur in up to DOCTOR:
1 in10 patients, but most of these individuals usually get better on their own
without the need to stop treatment.
▪ Low blood counts may occur in up to 1 in 20 patients, but these should be
detected by routine monitoring, which is necessary for anyone taking the
drug, before they cause a problem.
WHICH ADVERSE EFFECTS WOULD YOU BE MOST CONCERNED ABOUT? PATIENT:
▪ like any medication which dampens the activity of the immune system, DOCTOR:
methotrexate may suppress production of white blood cells in the bone
marrow and increase your susceptibility to infections.
▪ It also has the potential in a few patients, less than 5% of cases, to cause
liver problems or lung inflammation.
IF I GET THESE PROBLEMS, DO THEY ALWAYS GET BETTER IF THE DRUG IS PATIENT:
STOPPED?
▪ yes, in most patients both bone marrow suppression and liver or lung DOCTOR:
problems are reversible.
▪ Regular follow-up and blood test monitoring means that we would pick up
evidence of them at an early stage.

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▪ It would be equally important that you told us if you felt unwell or developed
a cough or shortness of breath while you were on the drug, so that we could
check things over promptly
ARE THERE ANY OTHER DRUGS THAT ATTACK THE DISEASE THAT I COULD TAKE PATIENT:
INSTEAD?
▪ yes, there are other drugs which modify disease activity, but all of them have DOCTOR:
side effects, many similar to those of methotrexate.
▪ Methotrexate is the one that’s been around the longest and none of the other
drugs are clearly better, so that’s why we recommend methotrexate in the
first instance.
IF YOU WERE AFFLICTED WITH RHEUMATOID ARTHRITIS, WOULD YOU TAKE PATIENT:
METHOTREXATE?
▪ yes, I would take methotrexate or one of the other disease-modifying DOCTOR:
antirheumatic drugs if I had evidence of active erosive disease, because of
the strength of evidence showing that early treatment prevents further joint
damage.
WHY CAN’T I WAIT AND SEE HOW THINGS GO? PATIENT:
▪ you can wait if you want to, but that’s not what we recommend. DOCTOR:
▪ Damage is occurring in your joints – we can see it on the X-rays – and if that
damage gets worse, then there isn’t any treatment that will turn the clock
back.

CASE 53
COMMUNITY-ACQUIRED PNEUMONIA
ROLE: you are a junior doctor on call in the acute medical assessment unit.

Mr Chang, aged 35, has been referred by his GP with chest pain, malaise, lethargy and a productive
cough.
His symptoms have been present for 4 days.
He is otherwise fit and well, and takes no regular medication.
He is a smoker of 20 cigarettes per day.
Investigations have shown that he has right lower lobe pneumonia, and his CURB-65 score is 0/5 (the
British Thoracic Society guidelines scoring system, indicating non-severe pneumonia in this case).
You feel that his illness could be managed at home, but he thinks he should be admitted for
treatment.

YOUR TASK: to explain the nature of his illness and treatment plan, including discharge with
continued treatment at home.
KEY ISSUES TO EXPLORE
▪ What are the patient’s concerns regarding discharge?
▪ Are there any problems with regards to discharge and recuperation at home?
▪ Is there a support network available if he is discharged?
KEY POINTS TO ESTABLISH

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▪ Explain the diagnosis and that the treatment plan is in line with current national
recommendations.
▪ Explore issue of smoking cessation in light of the patient’s current illness.
▪ Give details of who he should contact if he has any concerns, and suggest reattendance if any
there are problems.
▪ Explain follow-up plans after discharge.

APPROPRIATE RESPONSES TO LIKELY QUESTIONS

PATIENT: WOULD I NOT BE BETTER OFF STAYING IN HOSPITAL?


DOCTOR: ▪ no, I don’t think so.
▪ The investigations have shown us that you have an uncomplicated
pneumonia, and we have started the appropriate antibiotics and expect that
your symptoms will improve over the next few days.
▪ I’m pleased to say that you do not have any signs of severe pneumonia, and
your treatment can be safely carried out at home.
PATIENT: YOU ONLY WANT TO SEND ME HOME BECAUSE THERE AREN’T ANY BEDS IN THE
HOSPITAL.
DOCTOR: ▪ I can understand why you might say this, but it’s not true.
▪ If we felt that you needed to be admitted for treatment, then we would do so.
PATIENT: ARE YOU GOING TO BLAME MY SMOKING?
DOCTOR: ▪ yes, I am, at least partly.
▪ People who don’t smoke can get pneumonia, but smoking damages some of
the mechanisms that clear infection from the lungs, so as a smoker you are
more prone to respiratory illnesses.
▪ Smoking will also delay your recovery from such an illness, so it is important
to consider stopping seriously.
▪ If you want to try to do this, I would suggest that you discuss matters with
your GP or contact one of the relevant support groups.
PATIENT: WHAT IF MY SYMPTOMS DETERIORATE AND I DON’T GET BETTER?
DOCTOR: ▪ as I said, I don’t expect your symptoms to deteriorate.

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▪ However, if things do not improve or if there are any problems then you
should contact your GP for advice.
▪ And if things got really bad, which I am not expecting, then you could come
back up to the Emergency Department, although I think it very unlikely that
this will be necessary.
PATIENT: IF I GO HOME, WILL I NEED ANY FOLLOW-UP?
DOCTOR: ▪ yes, if all goes well it would be sensible for you to organise an appointment
with your GP to get checked over in a few weeks’ time.
▪ They will listen to your chest and organise a chest X-ray to check that
everything has cleared up as expected.

CASE 54
ACUTE PNEUMOTHORAX
ROLE: you are a junior doctor on call in the acute medical assessment unit.

Mrs Diane Johnson, aged36 years, is complaining of mild, right-sided chest pain.
She is normally fit and well and is a lifelong non-smoker.
On examination she is comfortable at rest and is not breathless.
Her pulse rate is 85 bpm, her respiration rate 14/minute and her oxygen saturation is 98% (on air).
On auscultation there are reduced breath sounds on the right.
A CXR reveals a small rightsided pneumothorax.
You are happy to discharge her with no further intervention, but with a recommendation to avoid
strenuous exercise (also flying and diving) until review, which you have arranged in 2 weeks.
She wants further treatment and feels she needs to be admitted.
Her husband is also very concerned.
YOUR TASK:
to explain to Mrs Johnson and her husband that no further intervention is required and that it is safe
to discharge her.
KEY ISSUES TO EXPLORE
▪ What are their concerns regarding treatment and planned discharge?
▪ Is an appropriate environment and support network accessible on discharge?
KEY POINTS TO ESTABLISH
▪ Explain the diagnosis, and the reasons for observation versus further intervention.
▪ Give advice on activity limitation, ie flying, diving and strenuous exercise.
▪ Explain that in the unlikely event of deteriorating symptoms, she needs to re-attend.
▪ Explain follow-up arrangements.

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APPROPRIATE RESPONSES TO LIKELY QUESTIONS

PATIENT: WHY ARE YOU NOT GOING TO TREAT ME?


DOCTOR: ▪ there are treatments that could remove the small amount of the air that
has leaked into your chest, but these involve putting needles or tubes
through the chest wall and so they are not without risk.
▪ We use them only when patients have a bigger pneumothorax than yours –
so large that it makes them breathless – or the lung is very collapsed on
the chest X-ray.
▪ I’m pleased to say that you have only got a small pneumothorax on the
chest X-ray and it’s not making you breathless.
▪ Therefore, the best advice is to wait: in 80% of cases it will get better on its
own.
PATIENT: WHAT IF I GET MORE SYMPTOMS WHEN I AM AT HOME?
DOCTOR: ▪ it is unlikely that you will, but if you get more breathless or if the pain gets
worse, then you should come back to the hospital immediately.
PATIENT: IF I GO HOME, WHEN WILL YOU SEE ME AGAIN?
DOCTOR: ▪ we will arrange for you to be seen in outpatients in 2 weeks’ time, with a
repeat chest X-ray.
▪ If there are any concerns prior to this, contact us or your GP.
▪ As I’ve already said, if you have more breathlessness or chest pain you
should reattend immediately.
PATIENT: WHAT ARE THE CHANCES OF THIS HAPPENING AGAIN?
DOCTOR: ▪ you are right in thinking that if you have had one pneumothorax then you
are at greater risk of having another one than someone who has never had
▪ the problem at all.
▪ It’s difficult to put a figure on this, but the chances of you having another
pneumothorax are probably about 30–40%.
▪ But the fact that you do not smoke and are fit and well reduces your risk of
recurrence.
PATIENT: WE’RE PLANNING TO GO ON HOLIDAY TO SPAIN IN 4 MONTHS’ TIME TO
CELEBRATE OUR WEDDING ANNIVERSARY.
IS THIS OK?
DOCTOR: ▪ yes, it’s important that you inform your travel insurance company – you

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should always do this if there’s a significant change in your medical
condition – but it should be all right for you to travel.
▪ The standard advice is that you should not fly for 6 weeks following
complete resolution of a pneumothorax, and diving on holiday, which
changes the air pressure in your lungs, is not recommended.

CASE 55
AM I AT RISK OF CANCER?
ROLE: you are the medical junior doctor on duty on the oncology ward

Mr Ian Booth, the son of a 56- year-old woman with advanced colon cancer who is an inpatient under
your care, asks whether he and his children are at risk of colon cancer.
You have checked his mother carefully, including taking a full family history.
Her brother died of colorectal cancer aged 45 years and her older sister has endometrial cancer.
Their father also died of colon cancer aged 52 years.
At the multidisciplinary team meeting, it has been noted that the occurrence of cancers in different
members of this family raises the possibility of hereditary non-polyposis colon cancer (HNPCC), and
there was a presentation on the topic.
The mode of inheritance for HNPCC is autosomal dominant.
A set of criteria, referred to as the‘Amsterdam Criteria’, has been established to assist in the clinical
diagnosis of HNPCC:

1. three or more members of a family have histologically confirmed colorectal cancer, one of whom
is the first-degree relative of the other two;
2. colorectal cancer extends over two or more generations;
3. colon cancer in one member of the family has been diagnosed before the age of 50 years;
4. exclusion of familial adenomatous polyposis.

The risk of colorectal cancer in HNPCC patients is about 70% by the age of 70 years compared with
2% in the general population.

YOUR TASK: the son asks you about the risk of him and his children developing cancer and what to
do about it.
KEY ISSUES TO EXPLORE
This scenario raises a number of issues, including:
▪ a member of the public asking for advice without appropriate referral;
▪ consent to release information about one member of the family to another;
▪ implications of genetic testing not confined to an index case;
▪ dealing with an anxious relative.
KEY POINTS TO ESTABLISH
▪ You are not allowed to release medical details about one person to another without consent.
▪ You are not responsible for his or his children’s medical care, and if any medical testing is

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necessary he should be advised to seek this via his GP.
▪ Nonetheless, it would be appropriate and caring to answer his enquiries to help guide him, and
it may be appropriate to obtain blood from his mother (your patient) for genetic testing with
her consent.

APPROPRIATE RESPONSES TO LIKELY QUESTIONS
SON: AM I AT RISK OF COLON CANCER?
DOCTOR: ▪ several cases of cancer within a family can occur by chance since one in three
people in the UK will develop cancer.
▪ However, the young age of your uncle (45 years) and the pattern of cancers in
your family are both suspicious, indicating that some cancers might run in
your family.
SON: HOW HIGH IS THE RISK?
DOCTOR: ▪ I cannot be sure at the moment, but I am concerned that your family may be
affected by a condition called – I’m afraid it’s a bit of mouthful – hereditary
nonpolyposis colorectal cancer, that’s HNPCC for short.
▪ I’ll write it down for you.
▪ This increases the risk of colon and some other forms of cancer.
▪ If your mother has this form of cancer – and I don’t know for certain if she
does, but she might – then she has a one in two chance of passing this risk on
to you.
SON: HOW CAN I KNOW IF OUR FAMILY IS AFFECTED BY HNPCC?
DOCTOR: ▪ there are a number of criteria that are used to define families with HNPCC and
your family’s history does suggest that you may have a higher risk of cancer.
▪ Genetic testing of blood samples from as many members of your family as
possible may help to work out whether you and your children have inherited
this increased risk.
▪ This service can be provided, with consent and explanation, by a cancer
genetics clinical service.
▪ Your GP can refer you to the doctors who run this service and will know how to
do this.
SON: IF MY MOTHER NEEDS A BLOOD TEST, HOW CAN WE ASK HER NOW?
DOCTOR: ▪ you first need to see a cancer geneticist to find out if they recommend that a
blood sample from your mother would be useful in establishing the risk for
you and your children.
▪ If so, we can discuss with your mother the reasons for asking for a blood
sample to help find out if other family members are at risk, explaining that it
will not be of help in treating her.
▪ She will need to give permission for the drawing of the blood sample and its
use for genetic testing.
SON: WHAT CAN I DO IF I AM AFFECTED BY HNPCC?
DOCTOR: ▪ if you (and your children) have inherited this risk, then there are screening
programmes that aim to detect a cancer early at a curable stage.
▪ This involves regular inspection of the bowel with a special telescope, called a
colonoscope, every 2 years to look for early cancers that are not yet producing
any symptoms.
▪ In addition you should look out for any symptoms that might be suspicious,
such as a change in the way your bowels are working – diarrhoea or

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constipation, and blood in your motions – or in your general health, for
instance if you lose weight.
▪ These should be reported immediately to your GP, who would then refer you to
the appropriate hospital specialist.

CASE 56
CONSENT FOR CHEMOTHERAPY (1)
ROLE: you are the medical junior doctor working on the oncology day unit

Mr Chris Thomson, a 28-year-old single man with newly diagnosed stage 4B Hodgkin’s lymphoma, is

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about to start six cycles of intravenous chemotherapy of Adriamycin (doxorubicin hydrochloride),
bleomycin, vinblastine and dacarbazine(ABVD), given as an outpatient on day 1 and 14 of each
28-day cycle.
The patient has already been given written information concerning the treatment, including the
Cancer BACUP booklet about Hodgkin’s disease and summary information about ABVD
chemotherapy covering the drugs that are used, how the treatment is given, how often treatment is
given, and the possible side effects.
The information provided states that with no treatment the patient is likely to die in weeks or
months; that with the treatment proposed the chance of surviving 5 years is 70 –80% (with the
possibility of high-dose chemotherapy and peripheral stem-cell transplant in the event of relapse);
and that the most significant side effect of chemotherapy is vulnerability to infection.
YOUR TASK: you are asked by the chemotherapy clinical nurse specialist to obtain written consent.

KEY ISSUES TO EXPLORE


▪ Before you examine, treat or care for competent adult patients you must obtain their consent.
▪ The main issues here are to establish competence to consent, and to explain the benefits and
risks of the treatment proposed or of other courses of action.
▪ Adults are assumed to be competent unless demonstrated otherwise.
▪ If you have doubts, the question to consider is: can this patient understand and weigh up the
information needed to make this decision?
▪ Unexpected decisions do not prove the patient is incompetent, but may indicate a need for
further information or explanation.
▪ Patients need sufficient information before they can decide whether to give their consent (in
this case, the benefits and risks of chemotherapy).

Is the patient competent?


Can he or she understand and weigh up the information needed to make the decision?

An unexpected decision does not mean that the patient is not competent.

KEY POINTS TO ESTABLISH


▪ Does Mr Thomson understand the key issues, ie prognosis without treatment, prognosis with
treatment, side effects of treatment, and possibility (or lack) of alternative treatments?

APPROPRIATE RESPONSES TO LIKELY QUESTIONS


PATIENT: WHAT ARE THE AIMS OF GIVING ME CHEMOTHERAPY?
DOCTOR: ▪ the aim of this treatment is to cure you of the disease.
▪ With this chemotherapy, your chances of surviving for 5 years are probably
around 70–80%.
▪ Furthermore, even if the disease were to come back, it is often still possible
to cure Hodgkin’s disease using high-dose chemotherapy and peripheral
stemcell transplantation – that is a sort of bone-marrow transplant using
your own cells.
PATIENT: WHAT WILL HAPPEN IF I DON’T HAVE ANY OF THIS TREATMENT?
DOCTOR: ▪ if you have no treatment for your Hodgkin’s disease, then I’m afraid that

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there’s no doubt that it will continue to grow and spread, and will lead to your
death.
▪ This is likely to occur within weeks or months.
PATIENT: WHAT DOES HAVING CHEMOTHERAPY ACTUALLY INVOLVE?
DOCTOR: ▪ the ABVD chemotherapy regimen is given by injection through a flexible
plastic tube into the vein, with you being treated as an outpatient every 2
weeks for 24 weeks.
▪ Before each cycle a blood test is performed to ensure that it is safe to give
the chemotherapy.
PATIENT: HOW CAN YOU TELL IF THE CHEMOTHERAPY IS WORKING?
DOCTOR: ▪ it may be possible to tell simply by examining you, for instance if the swollen
glands that we can feel get smaller, or we may repeat the CT scan after 2–3
months of chemotherapy, which will tell us more about the swollen glands
inside your chest and abdomen.
PATIENT: WHAT ARE THE SIDE EFFECTS?
DOCTOR: ▪ chemotherapy often causes unwanted side effects and it is difficult to
predict who will develop these.
▪ Some people are lucky and get very few side effects whilst others have a
rougher ride.
▪ Many possible side effects can happen and some are more common than
others.
▪ I will tell you about the more common ones and will give you a written
patient information leaflet that describes them in greater detail.
▪ If you have any questions, either before you start the treatment or during the
course of therapy, then please ask me or one of the nurses.
PATIENT: THE INFORMATION SHEET SAYS THAT THE CHEMOTHERAPY CAN AFFECT MY
FERTILITY.
DOCTOR: ▪ yes, that is one of the possible side effects: your ability to father a child may
be affected by the chemotherapy.
▪ You should already have had the chance to store a sperm sample so that if
your fertility is affected then it can be
▪ used for you to have a child in the future, but if you have not done so then we
can make arrangements.
▪ However, despite this, you must not assume that because you are on
chemotherapy you are not fertile.
▪ It is important that you do not father a child whilst on the chemotherapy
because the drugs could affect the growing baby.
▪ It is important that you use effective contraception whilst on the
chemotherapy and for at least a few months afterwards.
PATIENT: THE INFORMATION SHEET IS VERY LONG, WHAT IS THE MOST IMPORTANT PART?
DOCTOR: ▪ the most important thing to be aware of is that chemotherapy lowers your
resistance to infection.
▪ If at any time after starting the chemotherapy you get a high temperature
(over 38°C or 100.5°F), feel hot and sweaty or shivery, or you suddenly fell
unwell then you must contact the hospital oncology team right away.
▪ This is the most important thing because it may happen to you when you are
at home and it is something that you have to deal with.
▪ I have written down all the ways to contact us any time, day or night.

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▪ If you cannot get in touch with us, come straight to the Accident and
Emergency Department and explain that you are a patient on chemotherapy.
PATIENT: WHAT WILL HAPPEN IF I DO GET AN INFECTION?
DOCTOR: ▪ if you do get an infection you will be admitted to hospital, have blood tests
and other tests taken to find out the cause of the infection, and be given
injections of antibiotics into your veins.
▪ This normally settles things down within a few days or a week.
PATIENT: BUT CAN’T INFECTIONS SOMETIMES KILL YOU?
DOCTOR: ▪ yes, I am afraid that they can, but this isn’t likely.
▪ They usually settle with antibiotics and other treatments, but it’s true that
sometimes they can get very bad.

Further comments
▪ Excellent patient information is available for cancer patients from resources such as
CancerBACUP(www.cancerbacup.org.uk) and these should be provided for all patients as part
of the informed consent process.
▪ In addition all cancer patients should have a ‘key worker’ who helps to coordinate their care
pathway and is usually their first point of contact.
▪ All patients starting chemotherapy must be provided with instructions on how to access the
oncology team in the event of an emergency at any time of the day or night.

CASE 57
CONSENT FOR CHEMOTHERAPY (2)
Role: you are the medical junior doctor working in the oncology clinic

Mr Frank Lewis, a previously healthy 51-year-old man, is found to have a 3-cm right upper
lobe mass on his CXR during a medical insurance check-up.
He has a 30 pack-year smoking history, but no history of hypertension, diabetes or heart disease.
A CT scan confirms the right upper lobe mass.
No hilar or mediastinal nodal enlargement is seen, and there is no evidence of chest wall, liver or
adrenal involvement.
A transbronchial biopsy of the mass reveals squamous cell cancer (SCC).
A PET scan is positive in the primary tumour and in the right hilum, but is otherwise negative.
The patient undergoes a right upper lobectomy and full hilar/mediastinal node dissection.
He tolerates the procedure well and has a rapid, uneventful postoperative recovery.
Pathology confirms a 4-cm SCC.
Two hilar lymph nodes are involved with the tumour, but the mediastinal nodes are clear.

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The pathologic stage is T2N1M0(IIB).
At the multidisciplinary team meeting following surgery, adjuvant cisplatin-based chemotherapy is
recommended.

Your task: explain to the patient the rationale and benefits of the adjuvant chemotherapy that was
described in the multidisciplinary team meeting as follows: data from a large (1,867 patients),
randomised, controlled trial suggest a modest survival advantage (44% vs 40% at 5 years) for
patients who receive postoperative adjuvant platinum based chemotherapy.
Patients with good performance status should be offered the option of adjuvant chemotherapy
provided they understand that the expected benefit will be very modest.
The side effects reported in the trial included 0.8% of the patients dying from chemotherapy toxicity,
whilst 23% of them had at least one episode of grade 4 toxicity:
severe neutropenia (17%), severe thrombocytopenia (3%) and severe vomiting (3%).

KEY ISSUES TO EXPLORE


▪ As in the previous scenario, the issue again is one of consent, which in this case involves the
discussion and understanding of a finely balanced risk–benefit analysis.
KEY POINTS TO ESTABLISH
▪ Discuss the risk of recurrence and the estimation of the benefit of adjuvant chemotherapy
compared with its side-effect profile.
There are many times in medicine when the benefits and risks of treatment are finely
balanced and there is no ‘right’ and‘wrong’ answer.

APPROPRIATE RESPONSES TO LIKELY QUESTIONS


PATIENT: MY SURGEON TOLD ME HE HAD REMOVED THE ENTIRE TUMOUR.
WHY DO I NEED ANYTHING ELSE DONE?
DOCTOR: ▪ even after the operation there is a chance that the lung cancer can come
back, probably because some cancer cells had already spread but were too
small to be seen on any of the scans that you had before the operation.
▪ Giving people anticancer drug treatments into the blood can help to kill any
cancer cells that could be present and this will reduce the chance of the
disease returning.
▪ Unfortunately it does not completely eliminate the risk of the cancer returning
and does potentially have many unpleasant side effects.
PATIENT: HOW DO I KNOW IF THE CHEMOTHERAPY IS WORKING?
DOCTOR: ▪ there is no way of telling for an individual person if the chemotherapy is
helping because at the time it is given there are no cancer cells visible on
scans.
▪ All we do know is that giving chemotherapy after curative surgery for your
type and stage of lung cancer reduces the chance of the disease coming
back and improves your chances of being cured.
▪ The chemotherapy improves your chances of being alive in 5 years’ time by
about 4%, from 40% to44%.
▪ Or putting it another way, if we give 25 people this treatment, then one of

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them will be cured that would not have been if they did not have it.
PATIENT: WHAT IS THE DOWNSIDE OF CHEMOTHERAPY?
DOCTOR: ▪ of course the chemotherapy does have many side effects and I will discuss
these further with you before you decide, but the chance of dying because of
the chemotherapy is under 1%.
▪ I will give you some written information that has been produced for patients
in your position who have to make this difficult decision.
PATIENT: WILL YOU STILL LOOK AFTER ME IN THE CLINIC IF I DON’T HAVE CHEMOTHERAPY?
DOCTOR: ▪ yes, of course.
▪ Whether you decide to have the chemotherapy or not we will still look after
you in this clinic.
PATIENT: WHAT WOULD YOU DO?
DOCTOR: ▪ that’s a very hard question to answer! There are some people who will put up
with any treatment, however unpleasant, to increase their chance of being
cured of lung cancer.
▪ There are others who feel that the small increase in survival is not worth the
possible side effects and interference in quality of life.
▪ Without being flippant, it really is like the half-drunk pint of beer: to some it is
half full and to others half empty.
▪ There isn’t a right or a wrong answer.
PATIENT: DO I NEED TO DECIDE RIGHT NOW?
DOCTOR: ▪ no, I would suggest that you read the information that I’ve given you and think
about it, and about the things we’ve just talked over.
▪ Once you have done that then we need to talk things over again, perhaps
along with someone from your family or a friend if you’d prefer.
▪ But we do need to decide within the next couple of weeks.

Further comments
Caring for people with cancer requires careful deliberation and consultation with the patient.
To enable patients to participate in this decision-making process they have to be fully informed, and
thus clear delivery of information is essential.
A number of resources are available to supplement the information given by clinicians to their
patients.
These include web-based resources as well as patient information leaflets published by charities
including CancerBACUP and individual tumour-type patient groups.

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CASE 58
DON’T TELL HIM THE DIAGNOSIS
ROLE: you are the medical junior doctor working on the oncology clinic

The daughter of a 72-year-old man approaches you immediately before you are due to call her father
in for his first visit to your outpatient clinic.
The father has been referred by the urologists, who have made a diagnosis of metastatic prostate
cancer.
His histology and radiology have been reviewed in the multidisciplinary team meeting.
The patient has T4N1M1 poorly differentiated(Gleason 4+5) adenocarcinoma of the prostate.
There are widespread bone metastases on the bone scan and bilateral obstructive hydronephrosis
causing chronic renal failure.
The daughter states emphatically that ‘Doctor, you must not tell him what’s the matter.
I know it will kill him.
He will fall apart like Mum did.’
YOUR TASK: to discuss the situation with the daughter.

KEY ISSUES TO EXPLORE


▪ Collusion is generally an act of love that aims to protect the patient.
▪ Colluders often argue that they know the patient better than the doctor and are better able to
judge what the patient should be told.
▪ It is important to first acknowledge the colluder’s unique relationship with the patient.
▪ The next step is to explain that it is your responsibility and duty to give her father the
information that he wants about his illness.

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Collusion is generally an act of love, which should be acknowledged.

Information should never be forced on a patient who clearly does not want to receive it.

KEY POINTS TO ESTABLISH


You must explain that her father is unlikely to request information that he is not ready to hear, and
reassure her that you will check this out with him with each piece of news.
Any information will be given gently and sensitively, with opportunities to reflect and ask questions.

APPROPRIATE RESPONSES TO LIKELY QUESTIONS


DAUGHT HE’S MY DAD AND I KNOW HE’LL GO TO PIECES.
ER:
DOCTOR ▪I understand why you say that: you want to protect your father and that is because
: you care so much about him.
▪ Of course you have known him all your life and I have yet to meet him.
▪ I will only be asking him what information he wants to know – it’s my responsibility
and duty to tell him what he wants to know about his illness, and answer any
questions or anxieties that he has.
▪ However, I won’t force any information onto him that he doesn’t want to hear.
DAUGHT WHATEVER YOU DO, DON’T TELL HIM HE’S GOT CANCER.
ER:
DOCTOR ▪ he is not likely to ask questions about his illness if he is not ready to hear the
: answers.
▪ I will answer honestly any questions that he asks me, but I will make sure that he
wants to hear the answers before giving them.
▪ I won’t ram the cancer diagnosis down his throat if he doesn’t want to discuss it,
but equally I will not lie to him if he asks me directly if his illness is cancer.
▪ Very often I find that the patient already knows it’s cancer, but is trying to hide the
truth from loved ones to protect them too.
▪ When that happens it becomes a lot easier if both of you know the diagnosis and
then you can talk to each other about it.
DAUGHT I STILL DON’T WANT HIM TO BE ALONE WHEN YOU TELL HIM.
ER:
DOCTOR ▪ I agree, and I will ask him if he wants anyone to be present when we discuss the
: test results.
▪ If he says yes, then we can all talk together.
▪ If he says no – which I think is very unlikely – then I will talk with him first, and then
ask if he’s happy for us all to talk.
▪ Answering his questions about the diagnosis with you present will help you both to
talk openly about the cancer.
▪ It will allow him to discuss his feelings with you.

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▪ In my experience, being able to talk within the family about the diagnosis can
dramatically improve the quality of life of someone with cancer and often helps
everyone in the family.

COLLECTED FROM MEDICAL MASTERCLASSES


BY
DR
IBRAHIM ALI FARRAG

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