SECTION 4 - WHAT TO EXPECT IN THE LAST DAYS OF LIFE

15/07/2019 SECTION 4 - WHAT TO EXPECT IN THE LAST DAYS OF LIFE
SECTION 4 - WHAT TO EXPECT IN THE LAST

DAYS OF LIFE
Site: Moodle UC_D

Course: INTRODUCTION TO CAREGIVING FOR OLDER PEOPLE AT THE END OF LIFE#01
Book: SECTION 4 - WHAT TO EXPECT IN THE LAST DAYS OF LIFE
Printed by: Ana Serra
Date: Monday, 15 July 2019, 10:27 PM
www.ucd.uc.pt/moodle/mod/book/tool/print/index.php?id=3574 1/19
Table of contents
SECTION 4 - WHAT TO EXPECT IN THE LAST DAYS OF LIFE
Changes in the last days of life
Practical care
When death is near
Grieving before death?
What should I do immediately after the person I am caring for dies?
Section 4 wrap up
Sources
Section credits
Welcome to Section 4!
 How you learn
In this section we will talk about what happens in the last days of life. Knowing an older
person is close to dying can be very difficult, but recognising some signs and symptoms can
help you understand and better prepare for the last days. It may give you more confidence
and sense of control, which may help alleviate any anxiety you may feel. We will look at
what is specific and different in the personal and practical care in the last days, including
aspects like hygiene, administration of medication and financial issues. Knowing that death
is imminent, you may experience the first reactions to loss even before death happens. This
is why we will briefly look into the experience of grief before death.
Learning outcomes
At the end of this section you will be able to:
Recognise the signs and symptoms of imminent death.
Highlight specificities in the personal and practical care in the last days of life.
Recognise the importance of advance care planning.
Know what to do when death is near.
Know what to do soon after someone dies.
Changes in the last days of life
The last days in a person’s life are challenging for everyone involved. On one hand, death
and dying are usually considered a taboo topic, one that is not easily discussed. Throughout
life, people are rarely prepared about how dying looks like and what happens within this
process. So, for a carer with no previous experience of caring for someone towards the end
of life, all is new. It can be difficult to know whether what is happening is normal or not.
Emotionally it can be very difficult to watch someone go through the physical changes that occur in the
last days (like loss of weight, changes in the colour of the skin, rhythm and breathing sounds, being
unable to swallow, respiratory secretions, loss of bladder and bowel control, and so on). Some of these
changes may seem uncomfortable or even provoke distress in carers, family members and friends.
Carers usually report that managing shortness of breath and incontinence are especially stressful
because of the accompanying sounds and smells. These changes can happen suddenly without much
time to prepare.
Note that the above-mentioned physical changes are all part of the natural process of dying and even if
it looks distressing, it is usually not so for the person who’s approaching death.
Understanding disease progression: what happens?

 READING
People die of different diseases or, simply, due to the consequences of the aging process. We know
that in older people the most common causes of death are strokes, heart diseases and respiratory
diseases. Research has helped us understand how the physical decline looks like in different diseases.
The video below, produced by the British Medical Journal, explains a bit more about these so-called
disease
15/07/2019 trajectories. It shows not SECTION
only the4 physical
- WHAT TO decline
EXPECT INbut
THEalso
LASTthe pattern
DAYS OF LIFE of social, psychological
and spiritual decline over time. Remember, the end of life experience is marked by challenges in all
these domains.
Video Activity
Take a minute to think about what is the most important message of this video for you.
Palliative care from diagnosis to death
Palliative care from diagnosis to death, video produced by the British Medical Journal
What is most important in the last days?

In Section 3, where we discussed psychosocial issues, we highlighted the importance of dignity and
how what dignity means is very individual. Ensuring that care brings comfort, focuses on maintaining
dignity and respects the person’s values, beliefs and practices are also the most important orienting
principles for the care provided in someone’s last days of life.
Ask and observe:

What brings and maintains a sense of dignity in the person you are caring for?
What brings comfort to the person you are caring for?
Ask frequently, but not intrusively, if the person you are caring for is comfortable and what you
can do to make them feel more comfortable.
Although someone who is nearing the end of life may spend their last days of life less and less time
awake, very frail and not communicating much, we should continue to respect their autonomy, privacy,
recognising and addressing their rights and needs at all times.
The importance of the advance care planning

As you have seen in the previous video, many decisions about treatment and care can be made by the
person themselves before the end of life period. It is therefore important that carers know in advance
the wishes, preferences and priorities of the person they are taking care of and to show willingness to
talk
15/07/2019with them openly about their end of life
SECTION plans,
4 - WHAT TOshould
EXPECT the person
IN THE wishOFtoLIFE
LAST DAYS do so. Having these
conversations earlier rather than later is important because the person may lose the capacity to make
decisions as their condition gets worse and they get near the end of life.
Knowing the person’s preferences makes it easier for the carer to make or facilitate any major decisions
that may be necessary at the end of life. This can go from less significant but still important things like
positioning in bed to highly impacting things like treatment-related decisions (for example, about
intubation and resuscitation) or place of care and place of death. When treatment choices and care
plans are discussed before the end of life phase, the uncertainty we talked about in Section 3 is easier
to manage.
Some questions you may want to consider to ask the person you are caring for:
Who are the people you would like to inform about what is going on? Any specific family
members, friends, colleagues?
Is there someone in particular that is important to you that would like to see or speak to?
Is there anything, a specific object, you would like to have in the room where you are
spending most of the time? A photo perhaps?
Who would you want us to call or inform if your condition gets worse or something major
happens?
Go back to Section 1 and look again at some of the questions we discussed there, for example
how to ask about preferences for place of care or place of death. Because the end of life is a
particularly hard stage for carers to deal with also in terms of practical care, in the next subsection
we are going to explain more specifically what you can do about it.
Practical care
What are the most important goals of care for the last days? Usually we focus on maintaining
comfort, fulfilling wishes and improving the quality of life of the person who is recognised to be
dying. We also take special care in supporting their individuality, privacy and caring for any
psychosocial and spiritual needs. In this subsection we will give you some practical tips about
how to take care of an older person in their last days of life.
Practical care before death: what can you do different

 than before
READING
There are some steps that carers can follow to help make the person they are caring for feel more at
peace and comfortable. These include:
Using soft padding such as foam in order to make beds and chairs more comfortable.
Assisting the person in positioning, following the recommendations of the healthcare team.
Assisting with breathing, elevating the head (if this is comfortable for the person) or help the person
lay on their side.
Keeping the person warm by using blankets and gently rubbing their hands and feet.
Avoiding the use of electric heating devices such as electric blankets as they may cause irritation
and/or burns.
Using a clear and calm voice when communicating with the person.
Providing the patient with reminders of the date, time, place and people who are present, especially
if you notice that it helps alleviate confusion.
If the person becomes completely withdrawn, the use of calming phrases such as “everything is ok”
or other positive statements recommended by your healthcare team may help to create a calm and
peaceful environment.
Being present; helping to ease loneliness is a priceless comfort to someone who is dying.
Simply sitting and gently touching the person can help them feel more at peace. It is also important
to reassure them that it is all right to let go and die whenever they feel ready.
Your guiding principle should always be the individual needs of the person you
are caring for within the possibilities the situation and circumstances allow.
Personal hygiene Eating and drinking Technical aids Medication Financial issues
PERSONAL HYGIENE
The most important message in terms of handling personal hygiene in the last days of life is to
understand you must balance the benefits you may bring to the person you are caring for, and what
might cause them distress. Burdensome interventions which do not improve their comfort should be
avoided whenever possible. You should also consider the impact of these interventions on the
person’s family and friends.
Try to make the environment, the bed and the room as pleasant as possible. To keep the bed fresh,
change the sheets once per day if possible.
If you are the one who has helped with personal hygiene so far, you will still be able to do it. Just be
careful to adapt the care to what is most comfortable and acceptable for the person at this point in
time.
Often, in the last days of life, the general state of a dying person deteriorates to a point where you will
have to provide a bed bath with some wet sponges. Keep in mind the importance that individuality and
privacy has for the person. Be also careful with their body temperature, because with the deterioration
they will be experiencing, they will be more confined to bed and have more difficulty maintaining body
temperature.
Frequent repositioning is an important contribution to comfort, as with the deterioration the risk of
pressure wounds gets bigger. If positioning causes pain, ask the healthcare team to prescribe an
analgesic and discuss what would be the best time and the best way to administer it. Ask the
healthcare team if there is any position that should be avoided.
EATING AND DRINKING

With end of life coming closer, swallowing difficulties may occur. You can recognise this by frequent
episodes of chocking and cough associated with the moments in which the person is eating. This can
cause additional difficulties such as dryness of the mouth or in the worst scenario, respiratory
infections due to the aspiration of food to the lungs. If the person you care caring for can swallow,
keep their lips and mouth moist by offering small sips of fluid using a straw or a spoon. There are
certain lip balms that can also be used to prevent and relieve dryness in the mouth and lips.
Feeding can become difficult. Some tips that may help you with making the person you are caring for
enjoy more the food are:
to have a pleasant visual presentation of the meal.
to use fresh ingredients when preparing it.
to offer small portions.
to make pieces of frozen fruit.
to offer a little bit of coffee; it can help drowsiness.
to avoid intense smell of cooked food; it can provoke nausea.
In the last days of life, a dying person may express the wish to not eat at all and the general
suggestion is to respect that. The person may be refusing to eat for several reasons. Many times the
discomfort of eating is unbearable. In Section 2 we discussed the importance of understanding
anorexia and cachexia. We said it is sometimes difficult have for carers to accept the need to eat is
not there anymore. In the last days, if this happens, remember it will not make death happen sooner.
The extinct need to eat is simply a part of the dying process.
TECHNICAL AIDS
There are many technical aids to help you take care of an older person in the last days of life like:
Pillows to improve the positioning.
Pressure relief mattress.
Articulated beds.
Adapted cutlery.
Toilet assistance equipment.
With the help of the healthcare team, you can foresee what kind of technical aids are going to be
needed in the last days. In Section 3 we spoke about the importance of knowing with whom we can
count with for help and support and who are the key points of contact. In the last days of someone’s
life, there will not be much time to look for information and you will probably want to focus on being
present and spending time with that person. It is therefore important that you consider in advance
what kind of technical aids you may need to have at hand. Make sure you know what are the groups,
institutions, societies or associations that can assist you in acquiring technical aids before you get to
the last days.
MEDICATION
As a carer, you have to be familiar with the medication of the person you are caring for, what drugs
are being taken and what for, and the frequency and times to be taken. You should be well informed
about any potential side effects of the medication as some symptoms that seem like a deterioration of
the person’s general health state can actually be side effects. If you are not sure or have any doubts
or questions, talk to a member of the healthcare team.
When managing medication you should focus on these four principles:

The right medication to the right person: follow the indications of the healthcare team and do
not change the drugs, the dose or how and when to administer them without their knowledge. If
you do not agree with their proposed medication plan or you feel some other medication may be a
better choice, discuss this with the doctor in charge of care. Pay attention to expiring dates.
The right time: there is always a right time to take the medication, e.g. some medications only
work properly at a certain time, like before or after eating, or in the morning, so follow the
indications of the healthcare team.
The right route: for someone who is in their last days of life, the preferential route to take
medication is via the mouth (oral route). If this is not possible, ask the healthcare team which is
the best alternative. If the person has a feeding tube, some pills can be crushed but before doing
this, always ask the healthcare team. There are also other ways of giving medication such as
using patches (transdermal), via subcutaneous administration, and using the rectal route.
The right dose: know the prescribed dose and follow the indications of the healthcare team.
In the last days, with the help of the healthcare team, ask:
Which medications can be stopped.
Which ones need to be continued or replaced for ongoing symptom control (established pain
medication, vomiting medication, nausea medication, convulsions medication).
Which pills can be prescribed as oral liquids.
FINANCIAL ISSUES
What costs should you expect?
Carers often report that the end of life phase can be financially difficult as there are many out-of-
pocket costs involved, treatment-related bills may pile up and insurances may not provide full cover
for some procedures or interventions. This will depend on your specific situation, the country you live
in,
15/07/2019the health system and the health insurance
SECTION 4 - WHATarrangements
TO EXPECT IN THEthe person
LAST you
DAYS OF LIFEare caring may have in
place.
These are some of the costs you may have while caring for an older person at the end of life:
New medication, such as stronger analgesics, anti-emetics or oxygen support; all of them must be
prescribed by the healthcare team.
New technical aids, such as an articulated bed, a pressure relief mattress and pillows to improve
positioning.
Food supplements, which you may be able to find in a pharmacy for example, but first ask the
healthcare team which ones are indicated to the person you are caring for.
Specialised care provided by professionals like a physiotherapist, nutritionist, etc.
Diapers.
Diaper rash creams, to prevent maceration.
Modification of bathroom and/or rooms, to be adjusted to the person’s dependency stage.
Talk to other people who have cared for an older person at the end of life or to the healthcare team in
charge and ask them what works best in their experience. In addition, here are some tips, but mind
that some of them may not apply to your specific situation:
Get information about rights, entitlements and benefits.
Some institutions like hospitals, residential and nursing homes, associations and volunteers
groups often have technical aids available for renting; see what is available locally.
Some carers handover to these institutions medication and food supplements that are no longer
needed; see what is available locally.
Make sure the person(s) who will be in charge of practical arrangements after death takes place
know where the key documents or information are located (for example, the person’s birth
certificate, marriage certificate, titles to motor vehicles, bank statements, tax returns from the last
three to five years and latest financial statements).
Make sure any specific aspects of bills payment processes are discussed (direct debits or bill
sharing).
When death is near
How would I know that death is near?

 READING
There are some signs that can help you identify the moment of death is approaching. We listed the
most common ones in the table below but not all of them will necessarily appear. Be aware that dying is
an individual process and even if you have already witnessed someone’s death before, those last days
and hours may not follow the same pattern.
Common signs of impending death

Cold feet, hands, arms and legs, and sometimes a bluish tone, more noticeably in the hands,
feet, finger nails and lips.
Confusion and disorientation regarding the time, place and identifying people. Sometimes,
there may be hallucinations.
Sleepiness and difficulty being awake (semi-conscious state), having to spend the large
majority of the day in bed/resting.
Difficulty swallowing or not wanting to eat or drink at all.
Loss of bladder and bowel control, and a decrease in the amount of urine that is expelled.
Restless movements.
Changes in the breathing; slowed breathing, with longer pauses between each breath.
If you are a family member or friend providing care for a dying person at home, see if there are any
professional home care services available in your local community. Having a nurse or a doctor available
to visit at home can make a big difference for you, as a carer, and for the person you are caring for.
When
15/07/2019 available locally, these professionals usually
SECTION 4 - WHAT offer toINdo
TO EXPECT THEhome visitsOFand
LAST DAYS LIFE provide advice by phone
more frequently in the last days of life, to guide and support through this important phase.
I observed some of the signs of dying. What should I do now?

If you notice more than one of the signs mentioned in the table above, follow what you have previously
agreed on with the person you are caring for and their healthcare team. Try to follow the person’s
wishes and preferences to the best extent the situation allows. There can be situations where this may
not be possible. For example, death at home may not be possible if the healthcare team identifies a
relevant reason for hospitalisation. Let the healthcare team know of any major changes; they can
advise what specific actions should be taken to increase comfort for the person you are caring for and
the people around them.
 STOP!
When the person you are caring for:
Has persisting pain which has become difficult to manage or relieve.
Is no longer able to take medications as prescribed.
Demonstrates signs of distress such as being in severe pain, difficulty breathing or agitation.
Has a sudden change in consciousness, has become much less responsive or has a seizure.
Shows the first signs of impending death and has previously expressed that when these start,
they want you to call a health professional.
If you, as a carer, start feeling too overwhelmed by the person’s condition and the situation in
general, contact a health professional.
Grieving before death?
Anticipatory grief or pre-death grief

 READING
You have been caring for the person for a certain amount of time; it may be days, weeks, months or
years. During this time, you may have noticed some changes that make you feel the person is still
physically here, but not really here anymore. For example, the person may have difficulties recognising
relatives and friends, is not engaging in conversations anymore, or seems to have lost interest for
commonplace things. Even though the person is still alive, it is not like it was when they were feeling
healthier and with energy. It is natural you miss that version of the person you are now caring for, the
things you did together, the life as it was before. If you are caring for a person with dementia, you may
have been feeling like this for years. It is an experience similar to grief after death and it is a natural and
normal reaction to a series of smaller and continuous losses that you as a carer may experience
throughout the whole disease trajectory. We call this “anticipatory grief” or “pre-death grief”.
The person you are caring for often experiences this too. The loss of independence, the loss of the
ability to think clearly, the loss of their social network and mostly all the people that they love and will
lose with dying, their ability to hold and see a grandchild for example. We call it “preparatory grief” as
the person is processing all that will be lost as a preparation for death.
The signs of anticipatory grief or pre-death grief are similar to the grief we experience when someone
who is close to us dies. We will look into this in more detail in the next section. All the signs of grief we
will be describing in Section 5 may start to appear pre-death.
What should I do immediately after the person I am
caring for dies?
Firstly, when the person you are caring for dies you will notice some signs, like:
Not being able to feel a pulse, because the heart stopped.
Not being able to feel their breathing, because the lungs stopped functioning.
No muscle tension, because there is a normal relaxation of the overall body associated to the
event of death, and that is why bowel or bladder releasing happens; this means that you may
see feces and urine losses.
Eyes will seem like having a fixed stare.
Eyelids partially shut.
What to do after death

 READING
Carers are required to inform the healthcare team in charge of care that the person has died. Although
health professionals have to be notified, a natural death is not considered an emergency. This means
that you, family members and friends can take some time before letting professionals know. For
example, some families prefer to say a prayer, light a candle and share some thoughts or practice any
other ritual before calling the healthcare team.
There are some things that need to be done with the body; this is what is called “preparation of the
body after death”. These arrangements should be carried out within two to four hours of the person
dying, to preserve the body’s appearance and condition. Here are some tips that may guide you in
these intimate and important moments:
Ensure that the privacy and dignity of the deceased person is maintained.
Make sure the room is cool; turn off any heaters or electric blankets.
Straighten the person’s limbs since they will grow stiff in a few hours.
Place dentures, so that the person’s face could maintain the natural appearance.
You do not need to wash the body as this will be done by the healthcare team or the funeral service,
but you may want to wipe away any fluids.
If any family member or friend feels it is important for them to participate in this stage, consider
letting them do so; it may be important for their grieving process.
Choose the clothing that will be used for the deceased person.
Call the funeral service; they will explain you the following steps. You should write down the time of
death; it may be needed for the death certificate.
If the person had a feeding tube or other tube, they should be taken out. Jewellery too. Do not
forget to change diapers because bowel or bladder releasing is common.
Remember to honour the spiritual and/or cultural wishes of the deceased person and their family while
ensuring legal obligations are met.
During the time of caregiving, you as a carer have certainly gone through some very hard times. But no
situation compares to this one, the moment of death. It is normal and OK if you do not feel comfortable
with preparing the deceased person by yourself. Call the healthcare team and/or the funeral service
and they will either give you guidance, help and support, or step in and lead the way themselves.
Section 4 wrap up
Questions to ask a health professional when managing practical care in the last
days of life:
What can I do to make the person I am caring for feel comfortable?

Who can I call when I start to see the signs that death is nearing?
Is there anything I need to change in how I provide care in the last days?
Which technical aids, medications or food supplements should I have in place?
Questions you may want to discuss with the person you are caring for:
What being comfortable means to them; simple things like turning on a light at night can be
important.
Treatments and care that the person does not accept; these wishes should be discussed with
the healthcare team.
Preferred place to die.
Persons or family members that they want to be called when dying or after death.
Sources
Many of the topics mentioned in this section depend on how the health care and social care
system is organized in your country. Here you can find some booklets that can give you more
information about last days of life and issues discussed at the end of life as an additional
information but may not fully apply to your local context.
In the Caregiver’s Guide, provided by Virtual Hospice Canada and mentioned in the Section
2, you can find some of the chapters useful when exploring further the issues related to the
last days of life.
You can use this interactive chart from National Institute for Health and Care Excellence
(NICE) to further explore symptom management in the last days of life. On this website you
will find other guidelines health professional use in the context of end of life.
The booklet Improving the quality of care in the last days of life: A practical guide to getting
the medications right is specifically thought for everything related to medication in the last
days of life. It is written for health professionals. Reading it as an informal carer, you may find
it complex and involving a lot of technical terms.
Although this booklet on financial issues comes from hospice as understood in the United
States of America, we think it can give you an insight into different aspects of financial
planning you can consider when preparing for end of life.
 GO TO SECTION 4 ASSESSMENT
JOANA RENTE
AUTHORS MAJA DE BRITO
BARBARA GOMES
UC © 2018
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15/07/2019 SECTION 4 - WHAT TO EXPECT IN THE LAST DAYS OF LIFE

SECTION 4 - WHAT TO EXPECT IN THE LAST

Site: Moodle UC_D

 How you learn

Understanding disease progression: what happens?

Palliative care from diagnosis to death

What is most important in the last days?

Ask and observe:

The importance of the advance care planning

Practical care before death: what can you do different

EATING AND DRINKING

When managing medication you should focus on these four principles:

How would I know that death is near?

Common signs of impending death

I observed some of the signs of dying. What should I do now?

Anticipatory grief or pre-death grief

What to do after death

What can I do to make the person I am caring for feel comfortable?

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