End of life care (EoLC) is defined as enabling and supporting the palliative care needs of both patient and family to be identified and met throughout the last phase of life and into bereavement. It includes management of pain and other symptoms and provision of psychological, social, spiritual and practical support.1 Few would dispute the importance of EoLC for patients and their families, but it is clear from the literature that EoLC for older patients in emergency departments (ED) is not always as good as it needs to be.2
Indeed, Atul Gawande, the physician and author, believes our reluctance to honestly examine the experience of aging and dying has increased the harm we inflict on people denying them the basic comforts they most need.3
This is a sad indictment but such is the paradox of modern medicine that more people are living longer, often with chronic disease which, for many, results in frequent admissions to the ED. Older patients are often referred to the ED from nursing homes and their own homes when staff or family feel unable to cope with increasing severity of symptoms; this happens even where advanced directives are in place.4 With demand and need for inpatient beds far outweighing supply in most parts of the world, crowding in EDs is commonplace and sadly, but inevitably, some patients (particularly older patients) will end their days in the ED. It behoves us as caring professionals to urgently rethink our response to the needs of older patients dying in the ED so we are not denying them comfort and dignity in their last hours.
The wrong place to die?
There is a perception among ED professionals that the ED is “the wrong place to die”; this perception is understandable because the ED is traditionally designed to save lives, the focus being on saving lives rather than palliation.5 Nonetheless in the current landscape this thinking is outdated and serves as both an excuse and an impediment to improving end of life care in the ED. Some ED physicians have expressed concerns over a lack of training and a lack of skills in caring for patients at the end of life.6–9 Others have described helping someone die in conditions of comfort, dignity and respect as being one of the most gratifying clinical experiences, acknowledging that doing this in the ED is not easy.10 Research suggests that nurses overall are comfortable providing EoLC in the ED but often grapple with inadequate staffing levels and the competing pressures of the ED, alongside delivering the care the older patient needs and deserves and the emotional labour this appropriates.11,12 It would appear, however, that this professional view of the ED as being ‘the wrong place to die’ is not at altogether at odds with public perception and aspiration. Research globally has found that most people, when asked, would prefer to die in their own home surrounded by friends and families; however, most, particularly in the developed world anticipate they will die in hospital.13,14
Respecting dignity and autonomy
Delivering good EoLC in the ED is achievable and irrespective of constraints older patients and their families are deserving of privacy, dignity and compassion at the most vulnerable point in their lives and we have a duty to try our utmost to achieve this.
Central to good EoLC is having respect for the dignity and autonomy of the person; this ethos is enshrined in the 1948 Universal Declaration of Human Rights.15 Autonomy as a concept is derived from the ancient Greeks. More recent concepts of autonomy are philosophical products of the Enlightenment and the thinking of philosophers such as John Stuart Mill and Immanuel Kant, the latter proposing the inviolability and intrinsic nature of dignity.16,17
Respecting patient dignity and autonomy means listening and involving patients in decisions about their care. This can take time and calls for what one physician referred to as ‘doing sit down medicine in a stand up place’.18 Time is a precious commodity that is often in short supply in EDs but short-changing older patients and their relatives in terms of time at the point of maximum vulnerability in their lives is not an option.
This need for palliative and EoLC skills for ED clinicians has been recognised by emergency medicine colleges and associations globally and guidelines exist to support ED clinicians, all of which emphasise the importance of respect for the dignity and autonomy of the person.19–21
In the UK in 2013, the Leadership Alliance for the Care of Dying People, published two documents: One Chance to Get it Right and Priorities of Care for the Dying Person,22,23 which set out the approach to caring for dying patients under five priorities. These are:
- Recognising that someone is dying
- Communicating sensitively with the patient and their family
- Involving them in decisions
- Supporting them and their family
- Creating an individual plan of care that includes adequate pain relief, nutrition and hydration.
Recognising dying is an essential clinical skill but nonetheless challenging for most physicians, especially in the ED where there might be no previous knowledge of the patient or his/her medical history.24 Patients must be assessed by a doctor competent to judge whether the patient’s condition is treatable or whether death is likely in the next few hours or days.22,23 Physicians need to be mindful that initiating end of life talks in the ED can be upsetting for patients and families. Finding the right words calls for patience and understanding; privacy for the patient and family must be assured. Being frank and honest with the family and carers is important. These conversations can be very emotional, thus using clear plain language, avoiding euphemisms to minimise any misunderstanding, is essential.
Poor communication at the outset can intensify distress for the patient and carers, and can be the source of difficulty for subsequent care givers and sometimes the source of a complaint.25 Older patients feel vulnerable and are fearful of being alone in the ED, and staff need to be mindful of this.26 Ensuring patients and their family/carers know the name of the doctor and nurse caring for them helps minimise this abject sense of loneliness. Listening actively is key to establishing good rapport. Allow the patient time to talk if he/she can. Remember, patients with cognitive impairment may be slow to answer.
A good preamble is to ask the patient or carers what they already know about their illness; this gives the patient and/or carers ownership of the conversation and can often be quite insightful. Asking the patient about their fears, their goals and what they would like to have done for them will give the physician the way to broach the issue of resuscitation if appropriate.
Responsinf to patient and carer emotions is particularly pertinent in EoLC. As the emotional burden of EoLC and the skills to respond has been cited as a barrier by staff, this could be the right time to involve the palliative care team for added support and advice.
Do Not Attempt Resuscitation (DNAR) orders have had their uses in recognising the limited value of some medical interventions and treatments for older patients with terminal medical conditions, have always been fraught with misunderstanding and ethical difficulties.27 The European Convention on Human Rights mandates that physicians involve patients in making DNAR decisions.28 Physicians should be aware that such conversations can be received by patients and carers with unease and suspicion of DNAR as a withdrawal of treatment. This concern has some veracity as there is evidence that suggests in-hospital mortality is higher in patients with DNAR orders than for those with similar comorbidities and severity of illness without a DNAR in place.28,29 The physician needs to reassure the patient and carers that DNAR only applies to CPR, and not medication, comfort measures or general care.
Nonetheless, concerns about a DNAR and the associated difficulties have led to calls for a change of approach from DNAR to goals of care or universal forms of treatment.29,30 Goals of care are a multidisciplinary approach where the starting point is about what can be done rather than what cannot. It is quite a different approach, whereby the aim is to decide treatment choices and care needed.29
Unlike DNAR, the goals of care model places greater emphasis on emotional support for patients and their families and is an altogether more positive but realistic approach.29 Patients may be more receptive to this approach and physicians may be more inclined to initiate such conversations with patients on these terms. The Universal Form of Treatment Options (UFTO) is a similar concept which was developed with patients, doctors and nurses as an alternative approach to resuscitation decisions. In this approach, resuscitation decisions are contextualised within overall goals of care.30
Where patients lack capacity to make decisions about CPR or goals of care, the physician must ask whether there is a Lasting Power of Attorney or an Advance Directive relating to CPR in place. In the absence of either, the physician needs to consult those close to the patient, providing it is appropriate to do so. Those consulted must be advised that the overall decision lies with the clinical team.31
Supporting the older patient and family as death is imminent is one of the many privileges of our roles and the very cornerstone of caring but it can be a challenge to achieve in a crowded department. Having a dedicated room in the ED, or at least redesigning the physical space of the ED to accommodate EoLC with allocated nurse staffing, is advisable and preferable to transferring them to a ward as death is imminent.32
Having dedicated space would also encourage staff to reorient their thinking from the ED being the ‘wrong place’ to die. Ensuring privacy and explaining what to expect as death approaches is important in allaying anxiety for family and carers. Clinicians should never underestimate the power of a kind word or gestures of empathy and the enormous difference these can make to the grieving process.
Care needs to be holistic. Common symptoms requiring treatment in the older patient include pain, difficulty in breathing, noisy respiratory secretions, nausea and vomiting, dysphagia, incontinence and anxiety.29,30
Dyspnoea is experienced by many older patients with end-stage cardiac and respiratory conditions. This, and intractable pain, is often the crisis point for patients and families who feel unable to cope with the increasing severity of symptoms and need the reassurance and support of the ED. Although dyspnoea is a physical sign, it can also be a manifestation of emotional distress.
Morphine, recommended by the World Health Organization, is the most frequently used drug for the symptomatic management of dyspnoea and is included in their evidence-based list of essential medicines in palliative care, which was updated in 2013. Morphine has the advantage of also relieving pain and anxiety but it is also important to consider other likely causes of such distress.
Nursing interventions such as regular repositioning as well as personal hygiene and mouth care are fundamental for patient comfort. Interventions such as intravenous cannulas or urinary catheters must be justified for patient comfort and clearly explained to the patient, their family and carers. Clinicians should not overlook the spiritual component of death and dying. In our increasingly diverse society, death and dying are understood and experienced differently depending on cultural and religious meanings.
It is important to be culturally sensitive to diverse rituals, fulfilling the wishes of the patient and family as far as possible and reasonable should be the goal.
Where there are language barriers, best practice advocates the use of interpreters, but older patients might be unable to relate to an interpreter and prefer to have their families interpret for them. Families may also find the presence of an interpreter intrusive and quite inappropriate in the private space of their dying loved one. Staff should offer to call the Chaplin/Priest/Imam/Rabbi or relevant spiritual leader at any time if the patient desires.
Delivering good EoLC for the older patient in the ED is an increasing imperative as it is inevitable that more older people will spend their last hours in the ED. An acceptance of EoLC is an important function of the ED. Developing palliative and EoLC skills is essential to ensure that patients die with dignity and that the memory for families and carers is not marred by experiences of poor care.
Having a designated space that provides privacy and dignity is fundamental but this also requires adequate staff who are trained in EoLC to support the patient and family. Multidisciplinary training and closer working with in-hospital and community palliative care teams should be encouraged. A goals-of-care approach will reassure patients and their families that they are being cared for. Small changes can make a big difference, and with a different ethos and adequate resources, we can ensure that the ED is not ‘the wrong place to die’ and that older patients do not suffer unnecessarily in their last hours.
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