Care of the dying person

Key messages

• Being able to recognise that a person is imminently dying is a crucial step to providing high quality care.
• Care of a person who is imminently dying involves both clinical and ethical considerations but is based on a thorough assessment of current symptoms and forward planning for common problems.
• Care should be based on the needs of the person and the specific clinical context of care.
• Prognostication on the basis of disease trajectory is challenging but important to patient-and family-centred care [1]
• Withdrawing treatment is a complex and sometimes difficult process and there are guidelines available to help clinicians in this process. [2]
• The most common symptoms in the last two weeks to 24 hours of life are pain and shortness of breath. [3]

Evidence summary

Definition

The Australian Commission on Safety and Quality in Health Care defines dying as 'the terminal phase of life, where death is imminent and likely to occur within hours or days, or occasionally weeks.' [4] p.32. This term is interchangeable with ‘terminal phase’ or ‘actively dying’. The Palliative Care Outcomes Collaboration (PCOC) uses the term terminal phase and defines this as 'death is likely within days' [5]

Key barriers to implementing adequate care in the terminal phase are an inability of health care professionals in recognising a patient is dying, a lack of skills about how to manage symptoms in the last days or hours of life and how to communicate with patients and families about this process. Health care professionals report they are under skilled in these areas. [6,7] A systematic review examining the elements of care considered by patients and families as being of importance at the end of life established that effective communication and shared decision making, receiving expert care, and receiving respectful and compassionate care were important. [8]

Assessment

Palliative care is delivered in many settings, including acute hospitals, community and residential care settings. Not all people who are in their last months or days of life are referred to specialist palliative care services despite some evidence that referral to specialist services can benefit many patients. [9] Based on AIHW data, in 2017 approximately 49 per cent of Australians died in hospital, 35 percent died in Residential Aged Care Facilities and 16 per cent died elsewhere. [10] Of those people who died in a hospital 72 per cent received services from specialist palliative care. [10] Therefore, care in the last days of a person’s life is being delivered by both specialist and non-specialist services. Death is universal but individuals vary in their diagnosis and social circumstances and this can determine the care and services they receive.

A study in 2008 found that patients and their caregivers can have different preferences about where a person would like to be cared for in the terminal phase and these preferences can change over time. [11] For some people they may wish to stay in their home until they die for others they may wish to be in a hospice or other supported setting. A more recent study found that there are many factors influencing a person’s preference for a particular place of death and that an individual may change their mind the closer to death they are. [12] Providing people with an ongoing opportunity to discuss their preferences for place of care and place of death separately is as important as providing them with an opportunity to change their preference. [12,13]

Identifying that a person is imminently dying enables the family and health professionals to implement priorities based on the person’s preferences. However, assessing clinical symptoms may not always be easy but they provide the best support for prognostication. Patients and their families are usually aware that prognostic advice on the basis of disease trajectory is uncertain but they do expect the conversation and avoidance ‘jeopardises patient- and family-centred out-comes’ [1] The development of guidelines to support point of care decision making are now available. [14,15] These guidelines include a process for identifying when a person is entering the terminal phase. Prognostic tools such as the Supportive and Palliative Care Indicators Tool (SPICT) have been validated to identify when a person may require palliative care but are not useful in predicting imminent dying. [16,17] A recent study sought to identify how specialist palliative care doctors recognise a person is dying. [18] The key decision triggers in this study, which focused on hospice patients with end-stage malignancy, were the Palliative Prognostic Score (PPS), the presence of Cheyne-Stokes breathing, the level of agitation or sedation, noisy breathing and peripheral cyanosis. [18]

Treatment

The focus of this section is on the evidence relating to approaches to symptom treatment in the dying person. Specific guidance on how to manage symptoms in the dying person is available in the CareSearch GP Section and in the palliAGED Practice Centre. 

Care of a person who is imminently dying can be challenging but is based on a thorough assessment of symptoms and planning ahead for common problems. The evidence base supporting prescribing for terminal phase symptoms is not well developed, and many of the prescribing practices which have developed are either empirical or extrapolated from other settings. [19] Both clinical and ethical considerations need to be included in care of the dying person, for instance in regard to giving fluids or nutritional support. [20,21] Guidelines and Care Pathways for the dying person may assist appropriate and timely prescribing and decision making. [14,15] 

A systematic review examined the prevalence of symptoms in the last two weeks to 24 hours of life found the most common symptoms were pain and shortness of breath. [3] The most common symptoms seen in the actively dying person are discussed in Management of Symptoms section. Another review examined the prevalence of symptoms of patients who were diagnosed as dying, noting more than half of all patients were assessed as experiencing acceptable symptom control. [22] Of those symptoms which required more management than was initially provided, pain and breathlessness were more commonly experienced as being inadequately treated. [22] The same review also noted that patients who were dying at home were more likely to experience distressing symptoms and therefore may require more health care support. [22] 

The provision of care should be based on the needs of the person and the specific clinical context that the person is being cared for in. [23] General principles of prescribing practices in the care of the dying person require doses should be proportionate to those symptoms identified and response to treatment should be regularly re-assessed. Anticipatory PRN (as needed) prescribing for problems which may occur during the dying process (eg, delirium / agitation; respiratory secretions; pain) are an important aspect of care. This may also include crisis orders to cover foreseeable problems in particular patients, such as bleeding, severe respiratory distress, or seizures. In many clinical settings it is important to plan ahead for access to medications for those common symptoms which occur in the dying patient.

Discontinuing treatments

The cessation of non-essential or inappropriate medications is referred to as deprescribing and this is reviewed in the section on Transition to Palliative care. This is not the same as withdrawal of treatment or the decision not to initiate curative treatments which is discussed here. [24] A careful evaluation of the possible burden of how medications are given and of potential side effects they may cause should be undertaken.

Withdrawing or not commencing a treatment that 'has the potential to prolong a patient’s life' is a complex and challenging process. [25] Treatments like dialysis, ‘artificial’ nutrition and hydration, or mechanical ventilation may delay death but may not provide comfort or decrease suffering. [25-27] Defining treatments as ‘futile’ when the intervention would not accomplish the physiological goal intended is a potentially subjective process. [27,28] The guidelines set out by the General Medical Council in the UK avoid the term futile, preferring to outline ways in which a clinician could weigh up potential benefits and risks of a treatment. The term ‘potentially inappropriate treatment’ therefore provides a broader definition as treatments that may achieve their physiological goal or outcome sought by the patient but are not considered ethically justifiable by the health care professional. [25,28] There are a number of guidelines available to support clinical decision making in the withdrawal of treatment. [2]

The cessation of treatment can be challenging for health care professionals, patients, and their family. The rate at which patients are withdrawing from dialysis is increasing with one recent study reporting that nearly 50 per cent of patients chose to stop dialysis. [29] Their decision to cease treatment was based on increasing acute medical complaints and frailty, with the average time to death after cessation of therapy seven days. [29] In this study, as in others, palliative care service utilisation was low. [29,30]

Discussing the cessation of treatment should also include the impact that continuing treatment can have on a peaceful death. Implantable cardioverter-defibrillators extend the life expectancy of patients with heart failure, but many patients are unaware of the impact these devices have in the final days of life, with an estimated 31 per cent of patients experiencing at least one shock in the last 24 hours of life. [31,32] While there is some evidence that discussions around deactivation of implanted cardioverter-defibrillators have increased these devices remain active in the vast majority of patients who will experience unintended adverse effects at the end of life. [33]

Managing symptoms in the person who is dying

Palliative care medications at the end of life are usually given via the subcutaneous route, which is generally the least invasive and most reliable route in the dying patient. The clinical evidence patient management pages in CareSearch include topics covering the most common symptoms experienced by patients in palliative care and some of these pages will include a discussion about managing symptoms at the end of life. The following section will focus on clinical practice and evidence of the most common symptoms experienced by patients who are actively dying. For practical guidance on how to manage specific symptoms in the dying person both the CareSearch GP Section and palliAGED Symptoms and Medicines section have pages relating to evidence based best practice.

Pain in the terminal phase

Pain is reported as a common symptom in the terminal phase and a pain free death is a desirable goal for most patients. [6,19] There is limited research to guide recommendation on how to assess pain when caring for a patient who is dying. Observational pain assessment tools may be useful as patients may not be able to report their pain. Tools such as the PAINAD, CPOT, Abbey and FLACC may be useful, however care should be taken when using these tools in a dying patient. [34] Altered breathing patterns are common at the end of life and would affect the results of the PAINAD. A systematic review of observational tools used to assess pain at the end of life was unable to make any recommendations preferencing use of one tool over the others due to the low quality of evidence. [34]

There is also limited evidence to support recommendations to guide the choice of specific analgesics in the dying person. Transitioning patients from oral analgesics to parenteral routes, particularly the subcutaneous route, is common. [6] There is no evidence to support the use of one analgesic over another with the patient’s history, condition (hepatic and renal function) and previous use of analgesics guiding decision making. [19]

Dyspnoea in the terminal phase

Breathlessness is a common symptom at the end of life and is often seen in the terminal phase. Of those patients referred to palliative care nearly 70 per cent will experience dyspnoea and over 22 per cent will report the symptom as moderate or severe. [22,35] There is limited research into the management of dyspnoea in the terminal phase, although one review does support the use of morphine and midazolam together. [19] This recommendation is based on relatively small study sizes. There is no supporting evidence for the administration of oxygen in the dying person. [36]

Respiratory secretions in the terminal phase

There is currently no evidence to show that medications for treating respiratory secretions in the dying person are more effective than placebo, although the evidence base is extremely small. [19,37] In the absence of evidence to guide recommendations there is some uncertainty as to the need to treat secretions. However, it is recognised that noisy breathing can be distressing to carers and family and therefore it may be necessary to initiate treatment based on individual needs.

Delirium and agitation in the terminal phase

Delirium is extremely common in palliative care patients, with estimates that over 40 percent of palliative patients experience delirium and the prevalence increasing to over 80 per cent at the end of life. [38-40] In the person who is dying, delirium when combined with agitation may also be referred to as terminal restlessness. While delirium can have many causes for those with a life-limiting illness, as patients enter the last days of life managing the symptom may be of greater importance than establishing a cause. While a recent survey of palliative care specialists established that non-pharmacological management approaches to delirium are common most used it in combination with pharmacological interventions. [41] As symptoms become more severe at the end of life the use of antipsychotics becomes more common and palliative sedation may also be used. [41] There is limited research in this area to make firm recommendations for practice around the use of either medication group and patient response to treatment should guide decision making.

Functional decline in the terminal phase

As a person enters the last days of life their functional capacity will continue to decline and their ability to maintain continence, eat and drink will also decline. For those patients with reduced oral intake a decision regarding artificial nutrition and or artificial hydration may need to be made. A systematic review revealed that the frequency of use of artificial nutrition in cancer patients in the last week of life may range from 3 – 53 per cent, and artificial hydration may be used in up to 80 per cent [42] There is no evidence to establish the benefit in terms of survival, comfort or quality of life from either treatment. [43]

Managing refractory symptoms and suffering in the terminal phase

When symptoms do not respond to conventional treatment or become too severe, palliative sedation may be introduced to prevent suffering. [44-46] There are a number of guidelines available to support clinical decision making but a variation in quality does exist. [46] The EAPC has produced a framework on palliative sedation to help guide practice and in a recent systematic review most published guidelines were found to follow this framework. [47] The use of palliative sedation for non-physical symptom management is controversial. [45] Research is limited and there is a need to adequately define the concept of existential distress or suffering, but there is agreement among clinicians that sedating patients for this condition is not appropriate. [44] There is also limited evidence to support medication choice recommendations. Even though complex symptom control issues can bring pressure from carers and relatives (or clinicians who may not have the expertise) to consider palliative sedation to optimise symptom control, palliative sedation should not be initiated without adequate assessment of symptoms, engagement of appropriate clinicians and discussion and agreement with patient and families.