The Dying Patient

Context

Emergency Medicine clinicians are highly trained to resuscitate and stabilise emergencies and actively treat illnesses. However, patients approaching the end of their lives need a different focus: support to live as well as possible until they die, and to die with dignity when appropriate¹.

Achieving this is challenging. Balancing aggressive curative interventions against more palliative approaches when given incomplete information and an uncertain prognosis, and having to communicate rapidly changing situations to patients and families at distressing times, is difficult².

Emergency Medicine clinicians therefore need to be skilled at recognising dying patients, exploring goals of care with them and their relatives, helping them achieve those goals within their remaining time, identifying and managing distressing symptoms, all while acting within legal and ethical frameworks³.

Is the ED the right place for palliative care?

In the pressures of our work environment, recognising that someone is dying can be difficult⁴. However, our brief relationship with a patient can position us uniquely to have a more objective perspective of their overall illness trajectory that that of primary teams⁵. Pausing to consider a patient holistically at the first point of contact in the ED can add value immediately to their care and help prevent inappropriate escalation later in their hospital journey.

While a crowded emergency department, where boarding of patients is becoming more common, may not be the ideal location for someone near the end of life, early recognition by EM clinicians can also help prioritise these individuals for transfer to a calmer environment, either within the ED or elsewhere in the hospital.

Furthermore, as the population ages and multimorbidity becomes more common, we will see increasing numbers of patients with chronic life-limiting illnesses presenting with acute deteriorations or health crises, especially as the ED is always available when alternative care pathways dont exist³. While the majority of patients express a wish to die at home, less than half will do so, and ultimately most family members (74%) felt that hospital was the right place for their loved one to die rather than at home^{4, 6-8}. It is important therefore that we are familiar with palliative care principles to be able to provide them with the excellent quality care they need at a critical point in their lives.

Learning Bite

High quality palliative care is essential for patients attending the ED who are approaching the end of their lives. Emergency medicine clinicians are frequently best placed to commence this care in a timely manner.

Definitions

Approaching the end of life

The General Medical Council defines patients approaching the end of life are those who are likely to die within the next twelve months. Emergency physicians may encounter four different patient trajectories during this final year, each of which requires different approaches^9,10.

• Sudden/imminent death: abrupt decline after a catastrophic event such as an intracranial haemorrhage, major trauma, or a ruptured aortic aneurysm.
• Terminal illness: long history of illness, ending in a relatively rapid decline in function. Many cancers follow this pathway.
• Organ failure: overall gradual decline, with intermittent exacerbations, following which the patient never regains their former baseline, such as in COPD or heart failure.
• Frailty: slow steady functional decline, seen in dementia or with advanced age. Patients may present with an abrupt intervening deterioration due to events such as sepsis or trauma.

Palliative care approach

The palliative care approach has been defined by the World Health Organisation as one that improves the quality of life of patients and their families who are facing problems associated with life-threatening illness by preventing and relieving suffering, whether physical, psychosocial or spiritual¹².

It involves a holistic assessment of a patients needs and can be structured under a number of headings¹⁰:

1. Communication skills
2. Patient wishes
3. Emotional care
4. Spiritual care
5. Symptom management
6. Continuing care
7. Legal responsibilities
8. Post-bereavement care

These elements are often represented as interlocking pieces of a jigsaw, with each of equal importance, and are outlined below. Importantly, symptom management is only one element within this framework.

Palliative vs. end of life treatments

Palliative treatments are sometimes defined as aimed at symptom control, regardless of illness duration. End of life treatments may refer more specifically to those given in the final hours or days of life².

Learning Bite

Symptom management is only one small element of the palliative care jigsaw.

Is this patient approaching the end of life?

Determining with certainty if a patient is in their final year of life can be difficult if they are following a frailty or organ failure trajectory¹³. A range of tools exist to help identify people approaching the end of life (such as SPICT Supportive and Palliative Care Indicators Tool), but they may be cumbersome to use in the ED¹⁴.

Ask yourself: Would I be surprised if this patient died in the next year?

If the answer is No, then the patient may be approaching the end of life and you should consider whether a palliative care framework is appropriate. However, this surprise question has poor sensitivity and specificity for non-cancer trajectories such as frailty¹⁵. Instead, a range of clinical indicators may be helpful¹⁶:

• Two or more unplanned hospital admissions in the past 6-12 months
• Persistent and recurrent infections
• Weight loss of 5-10% in the past 6 months
• Multiple morbidity in addition to frailty
• Combined frailty and dementia
• Delirium
• Increased frequency of falls
• Rapidly rising frailty score
• Escalating patient, family or service provider distress.

Is this patient in the last hours or days of life?

Recognising when a patient is in the last hours of life may be straightforward if they have followed the sudden death trajectory above (but see Pitfalls below). Clinical signs that may point towards imminent dying in the other end of life trajectories include^10,13:

• Increased agitation
• Cheyne-Stokes breathing
• Refractory / progressive bradycardia
• Reduced consciousness
• Deeply mottled skin/cyanosis
• Progressive rapid weight loss
• Noisy pharyngeal or respiratory secretions
• Functional changes such as dramatic reductions in mobility or social interactivity.

Combining these signs with information from the patient, caregivers and other members of the multidisciplinary team, monitoring in the hours after arrival, and response to any treatment may help clarify if the person is nearing death, deteriorating, stable or improving¹³.

Learning Bite

Diagnosing dying is difficult. A range of clinical indicators combined with multidisciplinary assessment can clarify the situation in cases of uncertainty.

Communication skills

Not uncommonly, patients with worsening life-limiting conditions attend the ED with no recorded discussion of their wishes about treatment options in the event of an abrupt deterioration; only 4% of patients have any documented evidence of advance care planning prior to hospital admission¹⁷.

Honest communication is therefore an essential component of palliative care but is frequently avoided by healthcare staff due to a lack of confidence, a wish to avoid causing distress, or due to uncertainty over treatment response, such as in a frail patient with sepsis who may respond to treatment but has a significant chance of dying.

The goals of communication are to^10,17:

• Inform the patient and their loved ones what is likely to happen next
  • Be sure to convey the seriousness of situation.
  • Some patients may not want this conversation. We should respect that decision, while planting a seed to allow them to raise the issue later if desired.
• Convey uncertainty honestly
• Set realistic expectations in an open and honest way, without removing all hope
• Avoid specific predictions about possible length of time to death by using ranges (hours to days, days to weeks, etc.) and reminders about how uncertain the process is
• Explore a patients wishes and priorities rather than just break bad news

A conversation might go like this:

Youre very sick at the moment, sick enough that you might die.	Conveys seriousness of situation
Do you want all the details, or just the bare minimum about what might happen to you?	Finds out how whether individual is open to this conversation
Were treating you with antibiotics, fluids and nebulisers and we hope youll improve with them.	Sustains a small degree of hope, grounded firmly in reality of situation
But your body is very weak and Im worried that you wont respond to the treatment.	Honestly conveys expectations
The next few hours to a day or so are critical, but we cant be certain how things will go.	Gives loose possible timeframe range
If you dont improve and get sicker, I need to know whats most important to you.	Opens door to explore patients wishes or priorities

Various communication models to support conveying bad news in a structured way have been developed¹⁸.

If death does not appear imminent, but is likely during this admission, explore understanding about the patients illness trajectory with them or their loved ones:

• What do you understand about what is happening to you now?
• Have things changed in the last six months?
• Do you want to talk about what will happen to your health in the future?
• Are you afraid of anything in particular? Do you have any strong feelings about treatment that you would or wouldnt want to receive?

This helps you get an idea of the patients awareness of their overall trajectory and can help the inpatient teams lead further discussion about goals of care later in the admission if appropriate.

When a patient has a learning disability, it is especially important to be aware of their cultural background, likes and dislikes, how they communicate and how they express pain. A family member or caregiver who knows them well is often essential to ensure adequate communication¹⁹.

Avoid using language that suggests palliative care involves doing nothing. Phrases like withdrawing care, stopping treatment and ceilings of care can give the impression that all care is stopping, instead of futile or inappropriate treatments being stopped and a focus shifting to comfort and helping patients use their remaining time most wisely¹⁷.

Learning Bite

The phrase a patient is sick enough to die helps crystalise the seriousness of the situation for the patient and their loved ones.

Patient wishes

Exploring wishes

Following on from the communication section above, collaboratively establishing what a patient wants for their care is essential.

If they have capacity and can communicate, open questions can be useful, such as given what Ive told you about your health right now, what are your thoughts about what lies ahead and how you want to be treated?

If they are unable to communicate, you could get advice from a family member about a patients final wishes, saying if your mum could talk to us now, what would she say she wanted? or did your mum ever mention before how she wanted to be cared for if her health suddenly declined?

Framing the conversation around what elements of care will or will not be helpful for a patient is better than a narrowly conversation specifically on withholding treatment such as cardiopulmonary resuscitation (CPR)⁴. Inappropriate escalation of care within the hospital, such as to the intensive care unit, should also be explored and documented.

Pre-existing documentation

Some patients may have formally recorded the outcome of any previous decisions in an advanced care plan (ACP). This requires that a patient had capacity at the time the document was drawn up. A range of types exist^20,21:

Advance Statement

This is a written statement setting out a persons preferences, wishes, beliefs and values about any aspect of their future health or social care. It could include where they would prefer to be cared for, what treatments they would like, and what their priorities of care would be (such as pain control and being cared for at home prioritised over hospital care, even if treatment might be more effective there). It is useful as a guide to an individual, and must be taken into account, but is not legally binding.

Advance Decision to Refuse Treatment

This sets out in writing treatments that an individual does not wish to receive if they are unable to communicate or lose capacity. It is legally binding if valid, applies to the current healthcare situation, and was drawn up in compliance with the Mental Capacity Act 2005 (for England). Each treatment must be individually named, with the circumstances in which the patient wishes to refuse it, for it to be included within the scope of the document. These were formerly known as living wills.

Do Not Attempt CPR decision

A DNACPR decision relates solely to CPR in the event of a cardiac arrest and does not exclude any other intervention. Its narrow scope limits its usefulness. A more comprehensive approach to individualise treatment limitations is the Resuscitation Councils ReSPECT form (Recommended Summary Plan for Emergency Care and Treatment) which emphasises discussion, shared understanding and shared decision-making for care in emergencies.

Lasting Power of Attorney for Health and Welfare

A lasting power of attorney (LPA) can be appointed for either health and welfare, property and financial affairs, or both. It is important to confirm that a health and welfare LPA specifically has been appointed. To be valid, the LPA must have been drawn up voluntarily when the individual had capacity, then registered with the Office of the Public Guardian. If the patient subsequently loses capacity, the attorney can make binding decisions in the donors best interests on life-sustaining treatment, medical care and daily routine. If conflict arises between an advance decision to refuse treatment and a lasting power of attorney, an application may have to be made to the Court of Protection or similar for a one-off decision.

Electronic Documentation

The patient may have an entry either on the Electronic Palliative Care Co-ordination System (EPaCCS) in England, or an electronic summary care record with their GP that contains information on their wishes.

These elements of advanced care planning vary in their legal status between countries and regions of the UK. Consult your hospital palliative care colleagues or legal advisor if there is any doubt.

Lack of capacity

If a patient lacks capacity and has no valid advanced care planning in place, decisions must be made by clinicians in the patients best interests, guided by family members or loved ones, in accordance with the mental capacity legislation that applies in your jurisdiction.

Organ donation

Part of ascertaining a patients wishes may be a discussion around organ donation.

Legislation varies across the UK²². Since 2015 in Wales, if a patient has not registered a donation decision (either opting in or out), they will be considered to have no objection to organ donation called deemed consent. Scotland has a similar approach called deemed authorisation since 2021. In England, since 2020, individuals are assumed to agree to organ donation unless they have indicated that they wish not to donate an opt out system. Northern Ireland in contrast has an opt in system only at present, where individuals must indicate that they wish to donate their organs, though this is due to change in 2023.

If a patient in your ED is receiving end of life care, it may be appropriate to discuss their case with the Specialist Nurse for Organ Donation (SNOD) to consider suitability and further steps.

Learning Bite

Exploring a patients wishes for end of life care is essential. A range of documentation can help with this process, so remember to ask if any exist.

Emotional care

A key principle of emotional care is that no patient should die alone¹⁰. This may be easily fulfilled for patients with families and loved ones who are able to sit at the bedside. For those who would otherwise be alone, a busy emergency department may have limited availability of side rooms or support staff to sit with a patient for an extended period. Staffing help may have to be sought from other areas of the hospital for this important emotional role.

Regular checks by clinicians (possibly multiple times per hour) may be required to ensure distressing symptoms are managed and worries or fears responded to.

Video conferencing with absent relatives or friends can be useful if physical attendance is impossible.

Some loved ones like to feel helpful and involved in their relatives care, by providing mouth care or helping with oral hydration. This involvement, described as living the grieving process, should be encouraged if patient and relative wish it, while remaining optional²³.

Learning Bite

Special efforts may be needed to ensure no patient dies alone in the ED.

Spiritual care

Spiritual or pastoral support may be as important as symptom control when dying, regardless of religious background¹⁰.

You could ask a patient or their relatives do you have a faith or community that helps you in times of difficulty? or are there any spiritual rituals or customs you would like to have performed? It can sometimes help to suggest that one of the chaplaincy team here can support you if you would find that useful.

This open and sensitive approach invites the patient to direct any further steps as they see fit.

It is important to remember that certain artefacts or items of jewellery should not be removed after death in certain traditions, and that post-death rituals vary between religions²⁴. A dying Muslim patient may wish to sit or lie facing Mecca. In Hinduism, an oil lamp may be lit near the deceased immediately after death. In Buddhism, a large number of relatives may wish to gather for some time after death as viewing the body is a reminder of lifes impermanence. There may be cultural imperatives around a short duration between death and burial or cremation which may be affected if a post-mortem is required.

Sensitivity to these issues, while avoiding cultural stereotypes, can avoid adding to the distress of families.

Learning Bite

Sensitivity to spiritual and cultural needs can be as important as symptom control, to both the patient and their loved ones.

Symptom management

Pain, nausea, dyspnoea, agitation, catastrophic haemorrhage and troublesome respiratory secretions should all be expected. Simple measures and anticipatory medications should be prescribed to manage them.

Non-pharmacological

Pain: explanations of the cause of pain and expectations for its treatment can be helpful. Covering open wounds or splinting fractures can provide additional relief. If pain is due to a full bladder, full rectum or a wet bed, addressing these causes is important.

Dyspnoea: opening a window or providing a bedside fan to move air can help with breathlessness.

Agitation: a calm, quiet environment with low lighting levels can help ease agitation. Playing a patients favourite music or having a relative present can also be calming.

Catastrophic haemorrhage: a dark room with dark towels and bed linen can reduce the distress caused to patients and families by significant blood loss.

Respiratory secretions: repositioning and oropharyngeal suctioning can help reduce secretion burden.

Pharmacological

This is a sample of possible pharmacological prescribing options^4,5,13. Your own hospital or trust should have comprehensive guidelines on anticipatory prescribing approved for use in your ED which you should refer to.

Symptom	Medication Option	Starting dose
Pain
Normal renal function	Morphine or equivalent	2.5mg S/C, 2-4hrly/PRN
eGFR <30ml/min	Fentanyl	25mcg S/C, 1-2hrly/PRN
Agitation
No delirium	Midazolam	2.5mg S/C, hourly/PRN
With delirium	Add haloperidol	0.5-1mg S/C, 2-4hrly/PRN
	Or levomepromazine	6.25mg S/C, 4hrly/PRN
Nausea
Chemical cause	Levomepromazine	2.5-6.25mg S/C, 6hrly/PRN
	Or Haloperidol	0.5-3mg S/C, daily
Alternative	Cyclizine	50mg S/C, 8hrly/PRN
Bowel obstruction	Hyoscine butylbromide	20mg S/C, hourly/PRN
Respiratory secretions
	Hyoscine butylbromide	20mg S/C, hourly/PRN
	Or Hyoscine hydrobromide	400mcg S/C, hourly/PRN
	Or Glycopyrronium	200-400mcg S/C, hourly/PRN
Breathlessness
	Morphine	2.5mg S/C, hourly/PRN
	And/or Midazolam	2.5mg S/C, hourly/PRN

Patients already on oral opioids or anti-emetics may have their medication continued by subcutaneous infusion if needed. If three or more doses of as required subcutaneous medication are given, consider changing to a continuous infusion through a syringe driver.

Timely discharge

Depending on the clinical situation, patient preference and community resources in your area, it may be possible to arrange a timely discharge for those who wish to die at home.

NHS Continuing Healthcare in England may provide fast track funding for equipment such as a commode, hospital bed or home oxygen through the community nurse⁴.

A comprehensive handover to the patients GP and the community nurse, the local hospice or to the domiciliary palliative care nursing care team is essential to prevent the patient deteriorating unsupported at home causing distress and an unplanned reattendance at the ED.

Learning Bite

A range of options exist to manage the symptoms associated with dying. The drug-based options should be prescribed early so they can be administered promptly as required.

Continuing care

When a patient enters the dying phase, unhelpful investigations and ineffective treatments should be discontinued, including blood tests, monitoring of vital signs and unnecessary medication.

Pressure sores can develop quickly and cause significant pain, so regular turning and appropriate pressure-relieving mattresses should be used promptly.

Constipation, urinary retention or incontinence can cause distress and agitation, so should be screened for and managed appropriately.

Thirst can cause considerable distress to patients and to their watching relatives. If a patient is awake enough to swallow, they should be offered and supported to take food and drinks, though appetite usually wanes as the dying process progresses. Frequent mouth and lip care with gentle cleaning, moistening, tongue brushing, denture care, sips of water and application of water-based lip gel is essential.

If these measures are insufficient to control thirst, clinically assisted hydration with subcutaneous or intravenous fluids can be considered. NICE recommends advising patients or relatives that this may relieve distressing symptoms, but cause other problems such as pulmonary oedema and that it is unclear if giving hydration extends the dying process, or conversely withholding it hastens death¹³. A therapeutic trial of clinically assisted hydration may be reasonable if the symptoms or signs of dehydration are distressing, regularly reviewed every 24 hours.

Learning Bite

During the dying phase, the emergency medicine clinician should stop unnecessary investigations, emphasise the need for excellent pressure area and mouth care, and consider if clinically assisted hydration is appropriate.

Legal responsibilities

The legal aspects of determining a patients wishes have already been discussed. After a patient dies in the Emergency Department, you may have to consider if there are any forensic aspects to the case requiring the involvement of the police, who may need to preserve evidence or take statements. Similarly, the case may need to be referred to the local coroner (or procurator fiscal in Scotland).

Post-bereavement care

Senior clinicians in some trusts have a policy of offering to meet the families of those who died in their Emergency Department several weeks later. This provides an opportunity for them to ask questions or clarify aspects of their loved ones care.

If the death has been traumatic or upsetting for staff, it may also be useful to hold a debriefing session for them to explore any issues that have arisen and hear their suggestions for improvement.

A range of quality measures for palliative care in the emergency department has been developed which can be audited to assess the effectiveness of any ED palliative care initiatives²⁵. It has also been suggested that these deaths could be reviewed in more detail at departmental morbidity and mortality meetings to assess if there were missed opportunities for advance care planning or improvement¹⁷.

Assuming palliative care discussions are more appropriately led by inpatient teams. Emergency medicine clinicians can both add to a dying patients quality of life and help prevent unnecessary treatments being started or escalated.

Being too precise when discussing prognosis or time frames. Diagnosing dying is hard, as is estimating a patients trajectory in the final hours of life. If your precise projections are incorrect, it can add to the distress of family members and undermine their confidence in the care you are providing.

Prognosticating perceived devastating brain injuries is particularly difficult and prone to error. It is important not to commence a purely palliative approach in these patients until 24-72 hours has elapsed since the injury, regardless of the results of initial neurosurgical consultation²⁶.

Failing to review a patients advance care planning or appreciate the legal status of the various documents you may be given to review. An advance statement is not legally binding, whereas an advance decision to refuse treatment or a valid lasting power of attorney for health and welfare are.

Delaying prescribing anticipatory medication. Sedation and opioids dont shorten life if used at the minimum levels to relieve distress or uncontrolled pain, with dosages adjusted as needed.

Neglecting legal responsibilities following any death in the emergency department, such as involving the police, coroner or procurator fiscal, regardless of whether the patient was receiving palliative care or not.

1. General Medical Council. Treatment and care towards the end of life: good practice in decision making. Updated March 2022. Manchester, UK, 2010.
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6. Gomes B, Higginson IJ, Calanzani N, Cohen J, Deliens L, Daveson BA, et al. Preferences for place of death if faced with advanced cancer: a population survey in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain. Annals of Oncology 2012;23(8):2006-15.
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13. National Institute for Health and Care Excellence. Care of dying adults in the last days of life. NICE guideline [NG31]. London, UK, 2015.
14. University Of Edinburgh. Supportive and Palliative Care Indicators Tool. [Accessed October 27 2022].
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18. Dawood M. End of life care in the emergency department. Emergency medicine journal : EMJ 2020;37(5):273-78.
19. National Institute for Health and Care Excellence. Care and support of people growing older with learning disabilities. NICE guideline [NG96]. London, UK, 2018.
20. Byw Nawr. Jargon Buster, 2016. [Accessed 27 October 2022]
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Additional resources

• Resuscitation Council, UK Recommended Summary Plan for Emergency Care and Treatment.
• Elearning for Healthcare (ELFH) End of Life Care for All e-learning programme.