Older people have many unmet needs as they often require complex management of multiple physical, psychological and social problems. Cancer is prevalent in the older population and many of their chronic conditions are progressive and eventually terminal, yet older people often lack adequate access to palliative care. Drs Dylan Harris, Bella Richard and Pradeep Khanna review the issues.
First published July 2006, updated July 2021
- Palliative care aims to improve the quality of life for those with incurable disease by addressing physical, psychosocial and spiritual needs.
- Good palliative care is important in the management of patients with any incurable disease, whatever the diagnosis (eg, dementia, motor neurone disease).
- All older people are entitled to a ‘good death’.
- Palliative care for the older person should be timely and orientated, longitudinal and collaborative and comprehensive (TLC model).
- Good communication between healthcare professionals and families, and involving them in the decision making process, is a vital factor in good end of life care.
Palliative care is defined by the World Health Organisation as ‘an approach that improves the quality of life of patients and their families facing the problems associated with life threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual’1.
With increasing life expectancy there is an increasing proportion of the population over the age of 65. The pattern of disease in older life is also changing: more people are dying from chronic illness2,3. It is predicted that in 2020 the leading causes of death will be ischaemic heart disease, cerebrovascular disease, chronic obstructive airways disease, lower respiratory infections and then malignancy4.
The principles of palliative medicine apply to non-malignant as well as malignant conditions yet traditionally, high quality care at the end of life has been provided to cancer patients in inpatient hospices2. Around 95 per cent of patients receiving inpatient hospice care, home care or day hospice care have a diagnosis of cancer3. Less than one per cent of hospice beds are occupied by patients whose primary diagnosis is end stage dementia, for example1. In England and Wales only 13 per cent of those aged over 75 who died between 1995 and 1999 did so in a hospice, with 50 per cent dying in hospitals and 16 per cent in care homes5.
Terminal illness in older people
While there are detailed statistics on life expectancy – age at death, place and cause of death – there is little knowledge about the experience of death and palliative care needs for older people2,6. From the research that has been done, the experience of terminal illness late in life seems different to that in younger people: 50-80 per cent of younger people wish to die at home but increasing age has been associated with a preference not to die at home5. Different terminal diseases have different palliative care needs and patterns of illness: cancer, heart failure and dementia being examples.
Cancer is more prevalent with increasing age5 and 75 per cent of deaths from cancer occur in those aged over 652. There are significant psychological consequences associated with a diagnosis of ‘cancer’ and psychological support is needed from the time of diagnosis2. Studies conducted with patients suffering from cancer suggest most of them want more information about their illness (good or bad) and would like to be involved in decision making2,7,8. The course of illness is initially relatively unrestricted activity with usually a short period of rapid decline at the final stage of disease when there has been no response to treatment2. There is usually a clear terminal phase and patients are therefore able to plan for death9.
Heart failure affects one in 10 of those age over 702. However, being given the diagnosis of ‘heart failure’ does not have the same psychological impact as that of ‘cancer’, despite the fact the five-year mortality of 80 per cent is worse than many cancers2. Patients and their families often have poor understanding of their diagnosis, treatment (often complex drug regimes) and prognosis9. Patients are also less likely to be involved in decision making than those with incurable cancer9. The disease course is characterised by intermittent exacerbation of symptoms, with the patient often failing to return to the preceding level of function after each exacerbation. Though this characterises a gradual overall decline, there is quite often a sudden death9.
Dementia effects four per cent of those over 70 years and 13 per cent of those over 8010. A vast array of ethical dilemmas present themselves through the course of the illness, particularly once the patient has lost their capacity to make an informed decision. Equally, achieving adequate palliation can be difficult as assessment of symptoms, such as pain, becomes difficult once the patient has become unable to express themselves11. The median length of survival from diagnosis is eight years and there is a significant psychosocial and physical burden on the carer, who would benefit from palliative support at an early stage – not just at the point before death2. The disease course is characterised by progressive gradual deterioration to a high level of dependence at the end of life.
Table 1. Principles of a good death16
- To know when death is coming and to understand what can be expected
- To be able to retain control of what happens
- To be afforded dignity and privacy
- To have control over pain relief and other symptoms
- To have choice and control over where death occurs (i.e., a home or elsewhere)
- To have access to information and expertise of whatever kind is necessary
- To have access to any spiritual and emotional support required
- To have access to hospice care in any location, not only in hospital
- To have control over who is present and who shares the end
- To be able to issue advance directives which ensure wishes are respected
- To have time to say goodbye and control over other aspects of timing
- To be able to leave when it is time to go and not have life prolonged pointlessly
Reasons for inadequate palliative care for older people
Regardless of age or diagnosis, the older person is entitled to a ‘good death’ (Table 1). However, older people lack access to quality palliative care, particularly those with non-malignant disease1,2,4,9,12.There are a number of reasons for this:
- palliative care is practised as a terminal event rather than a longitudinal process – this does not meet the need of patients suffering from chronic, slowly progressive illness13;
- palliative care is often a parallel system rather than an integrated process13;
- it is often difficult to predict the course of illness and prognosis of chronic progressive diseases and so to time palliative care appropriately3,13; > there is a tendency to focus on physical needs rather than psychosocial and spiritual care12;
- the complexity of linking health and social support, lack of resources and outdated patterns of care and health systems delivery2;
- co-morbidity and drug reactions make symptom control more difficult on older people12;
- older people are more likely to be admitted to nursing homes or continuing care facilities where there is inadequate staff training in palliative care12,14 than in a hospice at the end of life;
- older people, particularly those with dementia, are unable to communicate symptoms at the end of life2.
Achieving good palliative care
Improved education allows generic palliative care to be practised outside the confines of a palliative care team and should involve all health care workers caring for patients at the end of their lives. Care homes and hospitals dominate as the place of death in the oldest of the old, and therefore these areas should be the target of training and resources as the population ages5.
Adequate communication is also vital between the patient, their carer, and primary and secondary health care professionals, including the palliative care team. The ability of health care professionals to communicate effectively with families – and involve them in decision making – consistently emerges as an important contributor to their satisfaction with care at the end of life15. Integrated pathways are in place in many health care settings geared to the last days of life. They facilitate a proactive (rather than reactive) multidisciplinary approach to improving quality of care12.
Any patient with terminal illness should have access to palliative care services, both generic and specialist, with policies for access based on need and not discriminated against by age, diagnosis (of nonmalignant illness) or uncertain duration of prognosis3,9.
Multidisciplinary teams are the best way of holistically managing patients with complex problems and their role should include supporting families and bereavement support after death2 . The ‘TLC’ Model of palliative care in the elderly summarises many of these requirements13. The initials stand for:
- T: timely and oriented (proactive rather than reactive, and delivered through a multidisciplinary team);
- L: longitudinal (a balance of palliative care and curative measures that evolves over the disease course until death);
- C: collaborative and comprehensive (shared decision making to address all domains of palliative care: physical, psychosocial and spiritual).
Older people have a significant need for palliative care at the end of life yet may not receive it, particularly if their terminal illness is nonmalignant. There are a number of problems specific to older people that make delivering adequate palliative care difficult but many of these can be overcome by generic palliative care training of all health care professionals, good communication and multidisciplinary working. All older people are entitled to a good death.
- Christakis NA and Escare JT. Survival of medicare patients after enrolment in hospice programs. NEJM 1996; 335:172-178
- World Health Organisation 2004. Better Palliative Care for Older People. World health Organization Europe
- Coventry PA, Grande GE, Richards DA, Todd CJ. Prediction of appropriate timing of palliative care for older adults with nonmalignant life-threatening disease: a systematic review. Age and Ageing 2005; 34:218-217
- Murray CAL, Lopez AD. Alternative Projections of mortality and disability but causes 1990-2020. Global burden of disease study. The Lancet 1997; 349:1498- 1504
- Lock A, Higginson I. Patterns and predictors of place of cancer death for the oldest old. BMC Palliative Care 2005;4:6
- Smith R. A good death. BMJ 2000; 320:129-130 7. Jenkins V, Fallowfield J, Saul J. Information needs of patients with cancer: results from a large study in UK cancer centres. Br J Cancer 2001; 84:48-51
- National Institute for Health and Clinical Excellence (NICE) (2004). Improving Supportive and Palliative Care for Adults with cancer
- Murray SA, Boyd K, Kendall M, et al. Dying of lung cancer or cardiac failure: prospective qualitative interview study of patients and their carers in the community. BMJ 2002; 325:929-932
- Hofman A, Rocca WA, Brayne C, et al. The prevalence of dementia in Europe: a collaborative study of 1980- 1990. International journal of Epidemiology Epidemiology 1991;20:736- 748
- Zwakhalen SMG, Hamers JPH, Abu-Saad HH, Berger PF. Pain in elderly people with severe dementia: a systematic review of behavioural pain assessment tools. BMC Geriatrics 2006; 6:3
- British Geriatric Society (2004). Palliative and end of life care of older people. Compendium Document. BGS 2004
- Jerant AF, Azari RS, Nesbitt TS, Meyers FJ. The TLC Model of Palliative Care in the Elderly: Preliminary Application in the assisted Living Setting. Ann Fam Med 2004; 2:54-60
- Cleary JF, Carhone PP. Palliative medicine in the Elderly. Cancer 1997; 80:1335-1347
- Baker R, Wu AW, Teno JM et al. Family satisfaction with end-of life care in seriously ill hospitalized patients. Journal of the American Geriatrics Society Society 2000;48(suppl 5):61-69
- Debate of the Age health and care group. The future of health and care of older people: the best is yet to come. London: Age concern 1999