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Practice Review

Emerg Med J: first published as 10.1136/emermed-2019-208632 on 13 August 2019. Downloaded from http://emj.bmj.com/ on 20 August 2019 at University of Warwick. Protected by
End of life care in the emergency department
Mary Dawood

Correspondence to Abstract with the culture of palliative and EoLC, which


Mary Dawood, Emergency The importance of end of life care (EoLC) for patients and balances quality of life against the burdens of inva-
Department, Imperial College
NHS Trust, London W2 1NY, UK; their families is well documented, however, the skills and sive treatments.5 Much of the evidence to date is
​mary.​dawood@​nhs.​net knowledge of emergency clinicians in delivering EoLC is unequivocal in highlighting the barriers to good
not widely understood but it is clear from the existing EoLC in the ED which include: professional atti-
Received 1 April 2019 literature that we fall short in delivering consistently tudes/understanding, a widespread perception
Revised 24 July 2019
good EoLC although there is recognition of the need of the ED being the ‘wrong place to die’,6–8 the
Accepted 24 July 2019
to improve. This paper will acknowledge the challenges emotional burden, lack of space, time, staffing
of delivering good EoLC in the emergency department resources and the socio/family context.6–9 Some
(ED) but more importantly consider practical ways of ED physicians are keen to develop skills in pallia-
improving EoLC in the ED in line with best practice tive care but have expressed concerns over a lack
guidelines on EoLC. of training and a lack of skills in caring for patients
at the end of life.10–14 A qualitative study by Wolf
et al found that emergency nurses are comfortable
We have the opportunity to refashion our institu-
tions, our culture, and our conversations in ways providing EoLC in the ED but cite the mismatch
that transform the possibilities for the last chapters between the goals of the ED and those of EoLC care
of everyone’s lives.” as difficult to reconcile.15 Another study found that
― Atul Gawande, Being Mortal: Medicine and nurses find reward in the EoLC by investing them-
What Matters in the End. selves in the nurse–patient relationship, thereby
developing emotional intelligence which ultimately
creates a more positive experience for the patient
Introduction and their relatives.16
The importance of end of life care (EoLC) for Most people when asked would not choose to
patients and their families is well documented. The end their days in the ED but nonetheless many,

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skills and knowledge of emergency clinicians in especially in developed health systems, antici-
delivering EoLC is not widely understood but it is pate that they will die in hospital.17 18 Regardless
clear from the existing literature that we fall short of perceptions and expectations, the reality is the
in delivering the consistently good EoLC. However, ED is the place where people most frequently seek
there is recognition of the need to improve.1 urgent care.19
Increasing attendances to the emergency depart- The need for palliative and EoLC skills for ED
ment (ED) of patients in the last days or hours of clinicians has been recognised by emergency medi-
life is inevitable as a result of longevity, medical cine colleges and associations globally and there
advances and more effective management of are clear guidelines to support ED clinicians.20–22
a chronic disease. In some departments advances Furthermore, the American Board of Medical
in major trauma care have resulted in many more Specialities established hospice and palliative
patients particularly older patients surviving the care as a sub-specialty of emergency medicine in
initial insult and being conveyed to the ED often 2006.22
with catastrophic injuries where medical interven- In the UK in 2013, the Leadership Alliance for
tions are futile and the initiation of palliation and the care of the dying, published two documents,
EoLC would be the kindest and most dignified One Chance to Get It Right and Priorities of Care
course of action. Similarly, patients from nursing for the dying person.23 24 which set out the approach
homes are often referred to the ED when staff or to caring for dying patients under five priorities as
family feel unable to cope with increasing severity follows:
of symptoms, this can often be the case out of hours ►► Recognising that someone is dying.
when community palliative care teams are not so ►► Communicating sensitively with them and their
easily accessible.2 Families often need added support family.
in the face of increased physical and mental distress ►► Involving them in decisions.
in their loved one even where advanced directives ►► Supporting them and their family.
© Author(s) (or their are in place.3 In these situations, paramedic staff ►► Creating an individual plan of care that
employer(s)) 2019. No
commercial re-use. See rights often feels pressured to convey such patients to the includes adequate pain relief, nutrition and
and permissions. Published ED against their better judgement.4 With demand hydration.
by BMJ. for inpatient beds far outstripping supply in most These principles mirror the aforementioned
parts of the world resulting in crowding in EDs, guidelines all of which emphasise the impor-
To cite: Dawood M.
Emerg Med J Epub ahead emergency clinicians need to adapt their skills to tance of respect for the dignity and autonomy of
of print: [please include Day meet this growing need. the person.20–22 This paper will consider ways of
Month Year]. doi:10.1136/ The culture of emergency medicine to provide improving EoLC in the ED with respect to the
emermed-2019-208632 stabilisation in acute emergencies is often at odds priorities listed above.
Dawood M. Emerg Med J 2019;0:1–6. doi:10.1136/emermed-2019-208632    1
Practice Review

Emerg Med J: first published as 10.1136/emermed-2019-208632 on 13 August 2019. Downloaded from http://emj.bmj.com/ on 20 August 2019 at University of Warwick. Protected by
Delivering good EoLC
Recognising dying
Recognising dying is an essential clinical skill key to initi-
ating  EoLC, yet physicians, in general, are poor prognosti-
cators, even in palliative care where the patient may be well
known.25–27 The imminence of death is hard to predict but
certain signs have been traditionally recognised as heralding
death such as profound weakness, a patient being bed-bound or
comatose, only able to take sips of fluid, changes in breathing
pattern/breathlessness, skin changes, weak pulse and falling
blood pressure.28 However, the evidence base for these signs is
limited, and these signs are not exclusive to dying but could be
due to potentially reversible illness. Figure 1  PREPARED Model (adapted from Clayton et al30).
A Swedish study using multidisciplinary focus groups
explored the experiences of staff in identifying early and late
signs preceding dying in older patients. One early sign that the and prognosis. These include the PREPARED model,30 the
participants identified was resignation, for example, withdrawal Sage and Thyme model31 and the SPIKES model,32 all are used
from social contexts, lack of motivation and low mood. Late in palliative care for conveying upsetting news. The Sage and
signs that precede dying were identified as reduced circulation, Thyme model is mainly used by community nurses but the
increasing worry and anxiety, stopping eating and drinking, loss PREPARED model (figure 1) and the SPIKES model (figure 2)
of consciousness and marked changes in breathing patterns.29 It could be helpful to ED physicians in providing structure for
is important therefore that very ill and seriously injured patients difficult conversations.
brought to the ED or those whose condition deteriorates in the
ED be assessed by a doctor competent to judge whether the
patient’s condition is treatable or whether death is imminent
in the next few hours or days.23 24 Any decisions/interventions
need to be regularly reviewed and revised as the situation might
change.
Initiating end of life talks in the pressured environment that
is the ED can appear ill-timed and insensitive. Nonetheless, the

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clinician needs to be honest and open with the family and carers.
Where it is considered appropriate to initiate such conversations,
the timing of the conversation is of the essence and privacy for
the patient and family must be assured. Poor communication at
the outset is upsetting for relatives and carers, makes it difficult
for colleagues caring for the patient at a later stage and is some-
times the root cause of a complaint. Listening actively is key to
establishing patient rapport. Allow the to patient talk if he/she
can. It is important not to interrupt or break in with impres-
sions or questions. If there is a need to document, explain the
need but reassure the patient that he/she is not being ignored.
Such approaches convey clinician interest and attention. Using
clear plain language and avoiding euphemisms to minimise any
misunderstanding is essential. Most physicians know they never
get a second chance to deliver bad news better or differently,10
so finding the right words and initiating such conversations calls
for tact and empathy.
A good starting point is to ask the patient what they already
know about their diagnosis, this opening question will often
reveal more than one might expect making further probing
unnecessary. Asking the patient about their fears, their goals
and what they would like to have done for them will give the
clinician the way into broaching the issue of resuscitation. As
far as is possible and within reason, the dying person, and those
caring for them, should be involved in decisions about treatment
and care. The person and their family should know the name
of the doctor and nurse responsible for their care. Respect for
the dignity and autonomy of the individual must underpin all
actions.

Communication models
In recent years frameworks have been developed which focus on
informing the patient and carers about the patient’s condition Figure 2  Spikes Model (adapted from Baile et al32).
2 Dawood M. Emerg Med J 2019;0:1–6. doi:10.1136/emermed-2019-208632
Practice Review

Emerg Med J: first published as 10.1136/emermed-2019-208632 on 13 August 2019. Downloaded from http://emj.bmj.com/ on 20 August 2019 at University of Warwick. Protected by
Figure 5  Supporting the patient and family. CPR, cardiopulmonary
resuscitation; HDU, high dependency unit; NIV, Non invasive ventilation.

patient in DNAR decisions breaches article 8 of the European


Figure 3  NURSE mnemonic (adapted from Back et al50). Convention on Human Rights—namely, the right to respect for
private life which includes respect for the patient’s autonomy,
integrity, dignity and quality of life.34 It is not always feasible to
An important component of communication in end of life either make or be aware of existing DNAR decisions in the ED
situations is responding to patient and carer emotions. As as there is frequently not enough information on which to base
the emotional burden of EoLC and the skills to respond has such a decision. Nonetheless having to make immediate DNAR
been cited as a barrier by staff who are also trying to manage decisions is difficult for even the most experienced physician.
competing pressures in the ED, the NURSE mnemonic (figure 3) Relationships that can be built up in days or weeks in palli-

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may be helpful when responding to emotional and difficult ative settings need to be formed in hours or even minutes in
conversations. the ED.15 Listening to the patient and respecting his/her views
is important but it is also important to balance this against
Involving patients and carers in decisions the expert clinical judgement which may be different to what
DNAR versus goals of care the patient wants. Empathetic communication and reassurance
Ceilings of treatment and do not attempt resuscitation (DNAR) are essential as DNAR can be perceived by patients and carers
decisions have had their uses in recognising the limited value with alarm and suspicion as a withdrawal of treatment. This
of some medical interventions and treatments in patients with concern is not without foundation as there is some evidence that
terminal medical conditions but there has also been a misunder- suggests in-hospital mortality is higher in patients with DNAR
standing, inconsistencies and ethical difficulties in their appli- orders than for those with similar comorbidities and severity of
cation.33 It is important to remember that failure to involve the illness without a DNAR in place.35 36 Also, some clinicians still

Figure 4  Comparison between the traditional model of no code or DNR and the goals of care models (adapted from Arabi et al).38 DNR, do not
resuscitate.
Dawood M. Emerg Med J 2019;0:1–6. doi:10.1136/emermed-2019-208632 3
Practice Review

Emerg Med J: first published as 10.1136/emermed-2019-208632 on 13 August 2019. Downloaded from http://emj.bmj.com/ on 20 August 2019 at University of Warwick. Protected by
interpret DNAR as a withdrawal of treatment37 and nurses have diseases particularly in the last days of life. It is often the tipping
commented that once a DNAR has been confirmed, there is a point for carers’ and nursing homes who feel unable to cope
sudden relinquishment of medical care.9 with the increasing severity of symptoms and need the reassur-
In the light of such concerns and of recent litigation, there ance and support of the ED. Although dyspnoea is a sign of phys-
have been calls for a change of approach from DNAR to goals of iological disease, there is a growing appreciation in palliative
care or Universal Forms of Treatment33 (figures 4 and 5). medicine of the non-respiratory aetiologies particularly anxiety
Goals of care are not the same as advanced care planning or and emotional angst that can exacerbate breathing problems,
DNAR, it is a different breadth of concept where the under- intensifying the distress for the patient and carers.41
pinning aim is to decide treatment choices and care needed.38 Systemic opioids are the most frequently used drug treatment
Its starting point is positive of what can be done rather than for the symptomatic management of dyspnoea. Morphine is
what cannot or should not. It is a multidisciplinary approach as recommended by the WHO and is included in their evidenced-
opposed to a single discipline focus where patient preferences/ based list of essential medicines in palliative care which was
values should inform medical advice and shared decision making. updated in 2013. Morphine has the advantage of relieving
Unlike DNAR, the goals of care model emphasises emotional both pain and anxiety. However, significant barriers still exist
support for patients and their families.3 Patients may be more to the appropriate use of opiates in the EoLC.42 The evidence
receptive to this approach and doctors may be more willing to suggests suboptimal prescribing is due to knowledge deficits,
initiate such conversations with patients on these terms attitudinal concerns and unfounded perceptions of opiates
The Universal Form of Treatment Options (UFTO; figure 5) is hastening death.43 Older patients particularly, are prescribed
a similar concept which was developed iteratively with patients, fewer opiates.44 Although treating the physiological signs and
doctors and nurses as an alternative approach to resuscitation symptoms of pain and breathlessness is a priority for patient and
decisions. This universal approach where resuscitation decisions carer comfort and relief, it is important not to overlook other
are contextualised within overall goals of care is a one-page possible causes of such distress but to view it through a wider
document where discussions and clinical conditions are docu- biopsychosocial prism.45
mented first; then clarification of goals of overall treatment Non-pharmaceutical measures can be equally effective and
(active treatment or optimal supportive care) are outlined; there should not be dismissed in the face of pain and distress. A
is also a free text box for ‘opting out’ of invasive treatments. comfortable fresh bed, adequate pillows and sips of water go a
Supporting the patient and family in the ED setting can be long way to relieving distress. But the qualities most appreciated
challenging in terms of time pressures, privacy and ensuring a by patients and carers are empathy, compassion and kindness
quieter place for the family and dying person to be together. from the clinical staff.
However, it is what patients expect of us and it is the last kind- Nursing care should include regular repositioning as well as
ness we can offer that might make a difference to the grieving personal hygiene and mouth care. Poor intake of oral fluids can

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process. Explaining to the family and carers what to expect when result in a very sore mouth and tongue so constant mouth care/
death is imminent, particularly changes in breathing patterns, is moistening is imperative. The reason for any intervention such
important. This helps to allay the fear and anxiety that so often as intravenous cannulas or urinary catheters must be justified for
contributes to a less than good experience for the family. Having patient comfort and clearly explained to the patient, their family
an EoLC room in the ED or at the very least redesigning the and carers. Where possible, the Palliative Care Team should be
physical space of the ED to accommodate EoLC with allocated called for advice and to review the patient, they have specialist
nurse staffing is advisable and preferable to rushing the patient expertise that may benefit the patient and help clinical staff
to a ward especially if death is imminent.6 Having a dedicated caring for the patient.
room would also encourage a different mindset from the ED
being the ‘wrong place’ to die. This mindset ignores the reality
Cultural needs
of what is occurring in most EDs and is a barrier to improving
Many societies have become more diverse in recent years due
the environment for EoLC. Many EDs now have a dedicated
to the migration of people for economic and political reasons
room/cubicle for frail older patients or patients with dementia
including war.46 In a multicultural society, death and dying are
and this could be sufficiently flexible to accommodate a dying
understood and experienced within a complex mosaic of cultural
patient and their carers if no other private space is available. In
and religious meanings. It is important to be culturally sensitive
our current healthcare landscapes driven by targets and perfor-
to diverse practices but not make assumptions, establishing the
mance indicators, there remains a need for minimum standards
wishes of the patient and family takes priority as action or omis-
to be set for an EoL room in all EDs, for the dying patient and
sion can cause upset.
loved ones to be together in peace, dignity and comfort at the
Where there are language barriers, best practice advocates the
most vulnerable point in life. It is recommended that the interior
use of interpreters,47 but in the end of life situations, patients
design of palliative care accommodation and places for those at
may prefer to have their families interpret for them. It is essen-
the end of life should be of a more domestic aesthetic in deco-
tial that all EDs maintain up-to-date lists of chaplains and spir-
ration than a clinical one.39 40 Having such a facility in the ED
itual leaders of all denominations. Staff should offer to call the
would not only ensure patient privacy and comfort and minimise
Chaplin/Priest/Imam/Rabbi or spiritual leader at any time if that
noise intrusion but may also reduce the emotional burden on
is what the patient desires.
the staff caring for them.
Plan of care should include nutrition, symptom control,
psychological, social and spiritual support. Common symp- Organ donation
toms requiring treatment in the ED include pain, difficulty in Organ donation is a core competency in emergency medicine as
breathing, noisy respiratory secretions, nausea and vomiting, is the management of patients in the final stages of life.48 The
dysphagia, incontinence and anxiety.23 24 gap between the availability of organs for donation and patients
Dyspnoea and intractable pain are experienced by many desperately in need of transplants remains high and age is not
patients with end-stage heart failure, cancer and other respiratory a contraindication to organ donation. Yet many older patients
4 Dawood M. Emerg Med J 2019;0:1–6. doi:10.1136/emermed-2019-208632
Practice Review

Emerg Med J: first published as 10.1136/emermed-2019-208632 on 13 August 2019. Downloaded from http://emj.bmj.com/ on 20 August 2019 at University of Warwick. Protected by
particularly those who have sustained brain injuries (medical or 5 Grudzen CR, Richardson LD, Hopper SS, et al. Does palliative care have a future in
traumatic) that  are clearly not survivable may have been other- the emergency department? Discussions with attending emergency physicians. J Pain
Symptom Manage 2012;43:1–9.
wise healthy and may be suitable donors. This potential should 6 Beckstrand RL, Wood RD, Callister LC, et al. Emergency nurses’ suggestions for
not be overlooked or dismissed, emergency physicians have a improving end-of-life care obstacles. J Emerg Nurs 2012;38:e7–e14.
vital role in identifying and referring dying patients where organ 7 Marck CH, Weil J, Lane H, et al. Care of the dying cancer patient in the emergency
donation is a possibility and the specialist nurses for organ dona- department: findings from a National survey of Australian emergency department
clinicians. Intern Med J 2014;44:362–8.
tion should be contacted for advice and to approach family and
8 Decker K, Lee S, Morphet J. The experiences of emergency nurses in providing
carers.49 ED physicians should be aware and refer to their local end-of-life care to patients in the emergency department. Australas Emerg Nurs J
policies on organ donation. 2015;18:68–74.
9 Bailey CJ, Murphy R, Porock D. Dying cases in emergency places: caring for the dying
in emergency departments. Soc Sci Med 2011;73:1371–137.
Recommendations 10 Gisondi MA. A case for education in palliative and end-of-life care in emergency
medicine. Acad Emerg Med 2009:16:181–3.
►► Developing the EoLC skills and adopting a proactive
11 Shearer FM, Rogers IR, Monterosso L, et al. Understanding emergency department
approach to improving EoLC is essential to ensure patients staff needs and perceptions in the provision of palliative care. Emerg Med Australas
die with dignity. 2014;26:249–55.
►► Appointing an EoLC/Bereavement lead and having a desig- 12 Fassier T, Valour E, Colin C, et al. Who Am I to Decide Whether This Person Is to
Die Today? Physicians’ Life-or-Death Decisions for Elderly Critically Ill Patients at
nated space that provides privacy and dignity is a great start
the Emergency Department-ICU Interface: A Qualitative Study. Ann Emerg Med
but this will only be effective if staffing levels are sufficient 2016;68:28–39.
and all clinical staff have training in EoLC. 13 Smith AK, Fisher J, Schonberg MA, et al. Am I doing the right thing? Provider
►► Including advanced communication skills and palliative care perspectives on improving palliative care in the emergency department. Ann Emerg
competencies in the specialist medical and nursing curricu- Med 2009;54:86–93.
14 Wright R, Hayward B, Kistler E, et al. That was a game changer: clinical impact
lums is essential. of an emergency department-based palliative care communication skills training
►► Multidisciplinary training and closer working with in-hos- workshop. Emerg Med J 2019:e pub ahead of print: 26th July 2019:10.1136/
pital and community palliative care teams should be emermed-2019-208567.
encouraged. 15 Wolf LA, Delao AM, Perhats C, et al. Exploring the Management of Death: Emergency
►► Senior clinicians should be included in specialist teaching so Nurses’ Perceptions of Challenges and Facilitators in the Provision of End-of-Life Care
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reassure patients and lessen the angst experienced by physi- Japan, Italy, the United States, and Brazil: A Cross-Country Survey. The Economist
2016.
cians and patients in these difficult conversations.

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18 Gomes B, Higginson IJ, Calanzani N, et al. Preferences for place of death if faced
with advanced cancer: a population survey in England, Flanders, Germany, Italy, the
Conclusions Netherlands, Portugal and Spain. Ann Oncol 2012;23:2006–15.
Delivering good EoLC can be a challenging process in EDs as 19 Mierendorf SM, Gidvani V. Palliative care in the emergency department. Perm J
2014;18:77–85.
it is often associated with practical, ethical and legal dilemmas. 20 RCEM. End of Life Care for Adults in the Emergency Department. 2015 https://www.​
However, as demands for emergency care continue to rise along- rcem.a​ c.​uk/d​ ocs/​CollegeGuidlines/​5u (Accessed Feb 2019).
side a shortage of inpatient beds, it is essential that ED clinicians 21 European Recommendations for End of Life Care for Adults in Departments of
move towards an acceptance that provision of EoLC is a neces- Emergency MedicineEuSEM. 2017 https://​eusem.​org/​wp-c​ ontent/​uploads/​2017/​10/​
EuSEM-​Recommendations (Accessed Feb 2019).
sary and appropriate purpose of the ED. Making the EoLC a
22 American College of Emergency Physicians. Palliative Medicine in the Emergency
core function for emergency care amounts to a paradigm shift Department.
which will not happen overnight. But it is a goal we must work 23 Leadership Alliance for the Care of Dying People. One Chance to Get It Right. t​ inyurl.​
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greatest privilege for clinicians to have the opportunity to care Person. 2014b https://www.n​ hsemployers.​org/​news/​2014/​06/​leadership-​alliance-
and comfort a patient in the last hours of their life; we can, with (Accessed Feb 2019).
the right mindset and resources do this well. 25 Taylor P, Dowding D, Johnson M. Clinical decision making in the recognition of dying:
a qualitative interview study. BMC Palliat Care 2017;16:11.
Funding  The authors have not declared a specific grant for this research from any 26 Taylor PM, Johnson M. Recognizing dying in terminal illness. Br J Hosp Med
funding agency in the public, commercial or not-for-profit sectors. 2011;72:446–50.
27 Murray SA, Kendall M, Boyd K, et al. Illness trajectories and palliative care. BMJ
Competing interests  None declared. 2005;330:1007–11.
Patient consent for publication  Not required. 28 Sleeman KE, Collis E. Caring for a dying patient in hospital. BMJ 2013;346:f2174.
29 Åvik Persson H, Sandgren A, Fürst C-J, et al. Early and late signs that precede dying
Provenance and peer review  Not commissioned; externally peer reviewed. among older persons in nursing homes: the multidisciplinary team’s perspective. BMC
Geriatrics 2018;18.
30 Clayton JM, Hancock KM, Butlow PN, et al. & Currow DC. Clinical practice
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6 Dawood M. Emerg Med J 2019;0:1–6. doi:10.1136/emermed-2019-208632

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