Terminal Care - Synthesis

Terminal Care - Synthesis


Chronic or multiple illnesses or frailty can complicate the final years of older people. [1-3] Lack of attention to declining health may mean that they receive less than optimal support in the last days of life. [1-3] Recognition that a person is nearing end of life is important. [1,2] It can allow them, family, friends and carers to plan care, make use of the time before death and to understand what may lie ahead. [1,2,4] Preparing for the terminal phase requires attention to the physical, emotional and spiritual needs of the person and their family and carers. [1] This attention can continue through to the bereavement period. [1]

Quality Statement

The quality of the evidence is acceptable to high. Relevant to end-of-life (EoL) of older people are thirteen systematic reviews, [5-17] one guideline, [2] two evidence-based clinical guidance resources [18,19] three project reports, [3,20,21] an Australian Government report, [22] and two primary studies on an end-of-life care pathway for Australian aged care facilities. [23,24]

Also included were nine systematic reviews, [1,4,25-32] four guidelines, [33-36] two Australian Government reports, [37,38] two Australian Position Statements, [39,40] a meta-synthesis, [41] a concept analysis, [42] and a project document all relating to end-of-life care of adults but not specific to older adults.

Evidence Synthesis

‘Good care at the end-of-life and a dignified death should be regarded as basic human rights …’ Clark 2007, p. 108 cited by Bloomer at el. [4]

The last weeks of life present numerous challenges for both health professionals and informal carers. Previously managed symptoms may change, new symptoms may develop, and signs of impending death often present. As death approaches, symptom management is complicated by the patient’s declining ability to communicate. [29]

Quality end-of-life care can vary from person to person and may be difficult to define and measure accurately. Quality end-of-life care can include the following domains: quality of life, physical symptoms, emotional and cognitive symptoms, advance care planning, functional status, spirituality, grief and bereavement, satisfaction and quality of care, as well as carer’s well-being. [1] Obstacles to quality end-of-life care may include failure to recognise treatment futility, lack of communication among decision-makers, no agreement on a course of end-of-life care, and failure to implement a timely end-of-life plan of care. [1]

Defining end-of-life

The language of end-of-life care is inconsistent in the literature. [1,3,4,10,14,21,33,36] Many places have end-of-life care pathways which refer to care in the last days.

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.' [38] (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'. [21]

Recognising dying

It can often be difficult to be certain that a person is dying. [2,19,33,34,36]

The signs of imminent death are [2,19,36]:

  • profound weakness - totally bed-bound and requires extensive nursing care
  • drowsy, poorly responsive or unconscious with limited response to verbal or physical stimuli
  • difficulty with swallowing or unable to swallow
  • diminished intake of food and fluids, reduced or no urine output
  • changes in breathing pattern. 

Recognising when a person's death is approaching is an important clinical skill as it allows the healthcare team and the person, family and carers to prepare. [19,28,29,33-36] Accurately predicting the end of life is often difficult, and current prognostic tools and models are limited. [34] Huskamp [11] notes the importance of regular and standardised monitoring of residents’ health and communication within a multidisciplinary care team to optimise the start of timely end-of-life care and the early planning for such care.

The Surprise Question [2,3,19,38,39] is commonly used as a tool to recognise a dying patient. Other tools are Palliative Performance Scale (PPS), [35] Palliative Prognostic Index (PPI), [35] Palliative Prognostic Score (PaP), [35] SPICT (Supportive and Palliative Care Indicators Tool), [19] and Australia -modified Karnofsky Performance Status (AKPS). [19,36]

Findings from an integrative review on diagnosing dying support the concept of the ‘uncertainty in diagnosing dying’ and the need for clinicians to work with and within this concept. [28] Those with life-limiting illnesses other than cancer were less likely to be diagnosed as dying and more likely to be moved to hospital prior to death. [28]

Death preparedness and working towards a good death

Bloomer et al. [4] note a widespread reluctance to talk about death and, as a result, talking about death and dying is not done enough. Acknowledging and openly discussing illness trajectories with patients and their families can enable them to understand how they may die and to make appropriate plans. [4,42] Different models of care are required for different illness trajectories and planning for these may assist to avoid hospitalisation. [4]

Tenzek and Depner [41] conducted a meta-synthesis of published qualitative research studies that examined a good death from the perspective of bereaved family members. They used the findings to develop conceptual model. A thread that underpins the components of care in this model is communication particularly trust, empathy, listening, and assistance in decision-making. Other important elements of the model are place of care and the timely recognition of imminent death. [41]

Death preparedness is associated with an improved quality of death and dignity. [42] In a concept analysis, McLeod-Sordjan, [42] explains that the death preparedness incorporates two key components of a good death: awareness and acceptance. Death preparedness can lead to the acknowledgement of the end of one’s life in the form of an EoL plan. [42] As a result, death preparedness can optimise the clarity of communication of a person’s preferences, avoid conflict about EoL decisions and ease the burden of surrogate decision-making. [42] Sensitivity to cultural preferences is also supported by death preparedness. [42]

A review by Cook et al. [7] concludes that age is an important determinant for the initiation of “do not resuscitate” (DNAR) orders in critically ill patients, but whether this constitutes “ageism” remains unclear. The authors suggest that the appropriateness of DNAR orders must be judged in conjunction with patient and carer preferences, quality of life issues, and probability of survival of individual patients, factors which were not consistently considered in the included studies. [7] Many included studies commented on the importance of multiple comorbidities, loss of functional independence, and a decline in quality of life in determining the appropriateness of resuscitation in older people. [7]

Caring for a dying person

The needs of dying people may include, knowing when death is coming, understanding what can be expected, being able to maintain a sense of control and dignity, and having wishes acknowledged and respected, having access to information and appropriate high-quality care, and having access to spiritual and emotional support. [1,19]

The elements of care for a dying person [2,19,29,33,34,36] are:

  • review of the person's wishes and goals of care; this may include reference to an advance care plan (ACP) and an advance care directive (ACD) and discussion(s) with a substitute decision-maker, and consideration of discontinuation of treatment;
  • discussion of the place of care and support needs including regular review by the healthcare professionals and General Practitioner, as appropriate. If this is in the home, arrangement of a supply of equipment and medications, that the family and carers know how to recognise death, appointment of an authorised person who will be available to verify death; and what to do when the patient dies;
  • review of medications possibly ceasing medications that are no longer beneficial or can no longer be swallowed, a change of medication(s) or route(s) of administration if necessary, and anticipation and planning for the management of new or worsening symptoms;
  • offer of emotional and spiritual support appropriate to needs and preferences;
  • explanation of the deteriorating phase to the person and family including symptoms and signs of deterioration and how these will be managed; and
  • written instructions to avoid inappropriate resuscitation.

The section Communication at end-of-life discusses the evidence for timely initiation of end-of-life discussions and how older adults prefer to receive information on end-of-life.

Non-beneficial treatments (NBT)

The recognition by clinicians that treatment is futile is not necessarily easy. [4] Periodic medication reviews can ensure that medications are being used to optimise quality of life, rather than to endorse medications that are unlikely to provide benefit at the end-of-life. [3,28,36] Similar care needs to be taken to avoid aggressive active management when the clinical presentation indicates the time for transition from aggressive or curative to palliative or comfort care. [6,28]

Non-beneficial treatments (NBT) are interventions that will not be effective in treating a person’s medical condition or improving their quality of life. [19] NBTs may include interventions such as diagnostic tests, medications, artificial hydration and nutrition, intensive care, and medical or surgical procedures. [6] NBT is sometimes referred to as ‘futile’ or ‘inappropriate’ but these are not the preferred terms. [6,19,38]

Cardona-Morrell et al. [6] investigated the incidence in older people of non-beneficial interventions such as invasive procedures, operations, complex medications and costly actions commencing or occurring in the last 6 months of life. Commonly reported were admissions to ICU (mean 10-33%), commencement of chemotherapy (mean 33%), resuscitation attempts (mean 28%), dialysis, transfusions, and life support treatment (mean 29%). Death in ICU or a hospital ward or post-discharge within a few months of initiation of aggressive treatment was also common (mean 58.0%). Unnecessary imaging and blood tests were also common; rather than ‘aggressive’, these non-beneficial treatments were considered ‘low value’. [6] The findings strongly indicate the persistence of ambiguity about what is deemed non-beneficial, and a culture of ‘doing everything possible’ even if it is against expressed patients’ wishes. These behaviours have repercussions on the capacity and financial sustainability of the health services and perpetuate the unrealistic high social expectation of survival at all costs. [6] Difficulty with recognition of illness severity, diagnosis of dying or the need for limiting treatment, uncertainty about prognosis, lack of EoL discussions, lack of understanding of advance care planning, all help perpetuate non-beneficial treatment. [6]

End-of-life care for older people in home, hospital, or residential aged care

Guidelines describe best available practice for care of people at EoL, provide a framework that supports clinical decision-making, and promote practice change. [2,33-35]

The essential first step in planning and providing EoL care is acceptance by the person, family and clinicians that death is the likely outcome. [4] This acknowledgement in itself can be a difficult process as can be accurate prognostication. [4] Modern medicine has a strong curative focus and the change focus for curative treatment to palliative or EoL care can be difficult and distressing. [4] In a review by Bloomer at al. [4] the suggestion to replace the term ‘Do not Resuscitate’ with the term ‘Allow Natural Death’, is proposed to assist clinicians, their persons and families, to see EoL care as an empowered choice, rather than the end result of failed curative care.

In addition to physical care, spiritual care [1-6,9-11,25] and culturally appropriate care [10,20,30,40] need to be considered.

Place of care, place of death and preferences

Place of death depends on a person’s sociodemographic characteristics, social support, as well as illness- and healthcare-related factors. [12] Having an understanding of these factors better informs the discussions regarding preferences and the feasibility of dying in the preferred location. [12]

It is reported that older people, given adequate support, prefer to be cared for and die at home. [4,9,12,13,15] The familiarity, comfort and security associated with home is a contributing factor to a ‘good death’. [15] The success of home-based end-of-life care usually relies on the availability and involvement of an informal carer and adequate health and social services. [15]

Shepperd et al. [13] note that people with carers are clearer in their preferences for place of care and place of death. However, Brereton et al. [5] cite evidence that older people often report preferences for hospital care, feeling reassured by the presence of medical expertise and technologies.

It is important to remember that a person’s preferred place of care and preferred place of death may change over time. [12,13,38]


50–60% Australians die in hospital and it is estimated that almost three quarters of these deaths could have been anticipated. [4] With global population ageing, chronic illness is now the leading cause of death [4] and more people (many of whom are over 65 years old), with a wide variety of diagnoses, will need palliative care towards the end of life. [5] Chronic disease provides the opportunity to discuss EoL care before death is imminent. [6,9] Exacerbations are the opportunity to revise care plans. [9]

Aged care services and end-of-life care

In 2010-11, 116,481 Australians over the age of 65 years died. [22] Eighty percent had used aged care services in the 8 years before death and 60% were current clients of aged care programs when they died. [22] In all age groups, there was increased take-up of care in the last 6 months of life; this trend was much more marked for people who died aged 65 to 74. [22] Almost half (47%) began using aged care more than 4 years before death. [22] In all age groups, there was increased take-up of care in the last 6 months of life. [22] This trend was much more marked for people who died aged 65 to 74 years. [22] The older a person was at death, the more likely they were to have had access to a care program at the time of death. [22]

Costa et al. [12] describe the factors that support the likelihood of an older person dying in a residential aged care facility (RACF). These are resident or family preference for a RACF death; the availability of palliative care services in the RACF; having completed an advance directive (AD); some diseases such as dementia, stroke and end-stage disease; and a longer duration of stay in a RACF. [12]


Candy et al. (2011) [17] note that end-of-life care delivered in a RACF is associated with fewer hospital admissions and a higher likelihood of not dying in hospital.

The experiences of older people dying in a RACF have not been well investigated. [14] However, physical and psychosocial discomfort of dying in a RACF - pain, pressure sores thirst, loneliness and depression – have been noted in research with the suggestion that these could be prevented with improvements to staffing and resources. [14] Care staff conducting open discussions about death and the person’s fear of deterioration and dying have been suggested as an important way of improving an older person’s approach to and experience of death (in a RACF and other settings). [14]

Home care and home death

Shepperd et al. note in the USA, Australia and Canada, the number of people dying at home has increased. [13] They also note that in UK, despite having more palliative care services than any other country in the European Union including the provision of home care teams, the number of people dying at home has declined. [13] In part, this may be due to poor co-ordination of services. [13] These authors reviewed the literature to determine if providing home-based end-of-life care reduces the likelihood of dying in hospital and what effect this has on a person’s symptoms, quality of life, health service costs and care givers compared with inpatient hospital or hospice care. [13] The participants in the included literature were 63 years to 74 years old. The evidence compiled in this review supports the use of end of life home care programmes for increasing the number of people who will die at home. [13] The authors caution that organisation of end-of-life home care will depend on the configuration of existing services as caring for more people at home will place additional demands on primary care. [13]

Costa et al. [12] describe the factors that support the likelihood of an older person dying at home. These are an expressed preference for a home death (person and family); that the person does not live alone, is supported by an informal carer who copes with that role; support of a multidisciplinary home palliative care; and the early referral to palliative care. The factors that decreased the likelihood of home death included hospital admissions in the last year of life, and admission to a hospital with palliative care services. [12]

Candy et al. (2011) [17] note that end-of-life care delivered at home (adults, not necessarily older people) is associated with fewer emergency department visits, better symptom management and emotional support, and higher satisfaction of family members, and a higher likelihood of not dying in hospital.

A systematic review by Kim and Tarn [27] indicates that adults with greater involvement of primary care providers (PCPs) at the end of life are more likely to die at home and not in hospital. Dying with home care is associated with longer survival, less-intensive healthcare use, and better quality of dying and death in terms of symptom control, death preparation, and relationships with family and medical staff than dying in the hospital. [27] This will depend on the quality of PCP, continuity of care, and preferences of the dying person and their family and carers. This evidence is not specific to the care of older people. [27]

Family or informal carers are often responsible for providing the greater part of patient care, including management of complex terminal care medication regimes. [31] Health professionals’ support is crucial to success and confidence of a carer with this task. [31] 

End-of-life care and dementia

As a person with dementia moves into the advanced stages, it becomes increasingly difficult for them to be cared for at home and their needs may be best met in a residential aged care facility. [15]

People with advanced dementia may be hospitalised towards the end of their life. This is commonly for treatment of behavioural problems, fractures, infection, or new organ disease or failure. [16] A review by Monn et al. found that most had undergone routine and invasive medical interventions, such as blood tests and intravenous provision of fluids and nutrition, although these were commonly ceased in the last 48 hours of life. [16] A referral to palliative care was not always made in the hospital setting, and advanced dementia was not well recognised as a life-limiting condition. [16]

Managing physical symptoms

Managing symptoms in the last days of a person's life is generally a continuation of what is already being done, although symptoms can worsen, or new symptoms can develop. The person can be poorly responsive or unconscious at this stage, and assessment and monitoring are based on signs such as agitation, restlessness, facial expression, body posture and changes in breathing. [36]

The Therapeutic Guidelines: palliative care [36] list the common signs and symptoms in the last days of life as:

  • pain
  • altered breathing patterns or dyspnoea 
  • excessive respiratory secretions and noisy breathing
  • nausea or vomiting
  • agitation.

A review by Kehl and Kowalkowski [29] also includes abdominal swelling, fatigue, confusion, skin integrity, sleep problems and weakness.

The general principles of symptom management in palliative care apply. Management in the last days of life includes:

  • communication with the person, family, carers and relevant healthcare providers to ensure they know the person is dying and understand the goals of care
  • careful assessment of the person and regular review to ensure comfort and symptom control
  • continuation of general patient care as needed
  • use of general measures and drug therapy to manage symptoms as needed.

Conscious of the high prevalence of comorbidity, disability, frailty in the elderly and subsequent polypharmacy Dalacorte et al. [8] reviewed pain management in the elderly at the end of life. They conclude that both pharmacologic and non-pharmacologic approaches can be beneficial. [8]

Care pathways

Integrated care pathways for the last days of life detail the essential elements of multidisciplinary care to manage a specific clinical problem and ensure that the best available evidence is systematically integrated into care delivery while providing a framework for auditing and benchmarking care. [26] The Liverpool Care Pathway for the Dying Patient (LCP) is an example of an integrated pathway for the dying phase of palliation. [1,26] It was developed by Royal Liverpool University Hospital and Liverpool's Marie Curie Hospice in the late 1990s to help doctors and nurses provide quality end-of-life care in the UK. [1] Initially developed for the care of terminally ill cancer patients, it was later extended to include all patients deemed "dying" [1] and was used in 17 countries outside the UK. [32]  In England in 2009, the LCP came under criticism that particularly older people and patients with other diagnoses than cancer, were put “on the pathway” without adequate medical assessment and without adequate communication to relatives. [1] In 2013, the UK Government accepted the recommendations of an independent enquiry, and the NHS hospitals phased out the use of the LCP over the ensuing 6–12 months. [1] Similar decisions to phase out the LCP have not been made in other countries. [1]

Chan et al. [1] recognise that an end-of-life care pathway (EoLCP) is a complex intervention. They note the difficulty in determining whether the suggested negative consequences associated with the LCP are associated with the actual pathway-based care; poor implementation of pathway-based care; the emotional consequences of illness, death and bereavement; or a combination of these. [1] In 2016, these authors published a Cochrane review which investigated whether the end-of-life care pathways are beneficial or harmful for dying patients and their carers. RCTs, cluster RCTs and quasi-RCTs were included only if the effect of the pathway could be isolated. Only one study (from Italy) was included which provided very low-quality evidence of no difference for pain, nausea and vomiting. Certain non-eligible controlled or non-controlled before-and-after studies indicate that EoLCPs may have the potential to improve certain aspects of care (symptom management; clinical documentation and assessment; knowledge of end-of-life care among internal medicine students; prescription of medications for end-of-life; bereavement levels of relatives; and outcomes in relation to respect, kindness, dignity, family emotional support, family self-efficacy and co-ordination of care). [1]

The Residential Aged Care End of Life Care Pathway (RAC EoLCP) was developed to guide the provision of good quality end-of-life (terminal) care in Australian residential aged care. It incorporates evidence- and consensus-based best-practice clinical management and care coordination for dying residents. Evaluation of the pathway demonstrated a greater likelihood of ‘dying in place’ and hence avoidance of inappropriate hospitalisation. [18,23,24] It also highlighted the importance of staff education and support from management.

Published in 2017, a systematic review by Husebo et al. [32] finds that the LCP continues to generate a considerable number of publications and reports. Husebo et al. [32] investigated the use of LCP in residential aged care facilities (RACFs) and to what extent it has been adapted from its original use in cancer patients to the use among multimorbid residents and people with dementia. They also included papers describing the combined use of Gold Standards Framework for Care Homes (GSFCH) and LCP, and the use of LCP in acute geriatric wards and general geriatric wards. [32] The Gold Standards Framework for Care Homes (GSFCH) was developed in parallel with the implementation of LCP and provided educational modules. [32] This systematic review demonstrates that the LCP has not been adapted to the individual needs of dying residents and people with dementia. [32] In particular, the validity, reliability, and responsiveness of the tool have not been tested in the clinical setting. [32] As such, the LCP is not an evidence-based procedure and its use may not be justifiable. [32] These authors caution that the LCP (under this name or another) is still in use in many countries. They conclude that education and competence in RACFs is needed and that end-of-life care in dementia is a long and preparative process [32] with a palliative approach relevant to this life-limiting illness.

Evidence Gaps

  • It remains important to test the effectiveness of end-of-life care pathways for the last days of life.
  • Age increases the use of 'do not resuscitate' orders, but more research is needed to determine whether this represents 'ageism'.
  • There is a need for high-quality, prospective studies of the prevalence of signs and symptoms of impending death. There is a particular so for home EoL care, where informal carers are at the bedside and medications and treatments need to be anticipated to optimise care.
  • Future research examining the interactions between emotional, spiritual, and existential suffering for dying individuals could add to our understanding and suggest novel ways to manage suffering in the last weeks of life.
  • Further work is needed to determine the exact mechanisms behind the effect of primary care provider involvement on out-of-hospital deaths.
  • The experiences of older people dying in residential aged care needs to be better understood particularly the aspects of care that work well (i.e. positive experiences).

Page updated 05 July 2021

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