SupplementThe promise of a good death
Section snippets
Framework for a good death
Much of the effort to improve care for the dying, especially in the USA, has concentrated on using technology to relieve symptoms and avoiding invasions during the dying process.4, 5, 12 Those two goals are essential, but they do not encompass the ideal of a good death. Indeed, when surveyed, the concerns of patients seem to be as much, if not more, about loss of dignity, being dependent, not being a burden, and loss of control, than about physical or psychological symptoms.13, 14
What
Current knowledge about a good death
To achieve a good death means using—or deciding not to use—relevant interventions. Thus we need to identify what we know about the frequency, assessment, and importance of each modifiable dimension of the patient's experience and the use and effectiveness of the various interventions.
Physical symptoms
Of all the aspects of dying, pain is the most studied. Validated and reliable pain-assessment measures exist.17, 18, 19, 22 Extensive pharmacological, neuroablative, and anaesthetic treatments, as well as detailed treatment guidelines, should ensure adequate pain relief in 95% of cases.23, 24, 25 Nevertheless, among dying patients, pain remains inadequately treated, with a reported frequency ranging from 20% to over 70%.18
For some pain syndromes, such as neuropathic and visceral pain, existing
Psychological and cognitive symptoms
Less is known about psychological symptoms than about pain and most physical symptoms.12, 30 Whilst there are controversies about the appropriate clinical criteria for some psychological symptoms, such symptoms are both common and a major problem for dying patients.12, 17, 18, 19, 27, 28, 29 More than a third of dying patients may be depressed, and more than half of patients with advanced cancer feel sad, anxious, and irritable.27, 28, 29, 30 In addition, suicide rates are higher for the
Economic demands and caregiving needs
The limited empiric data suggest that caring for dying patients imposes significant economic demands and caregiving burdens on families. About a third of American families experience a significant loss of income and savings because of a terminally ill family member.35, 36 Dying patients often require substantial nursing and personal care at home as well as home-making services.12, 37 One report found that among terminal cancer patients, 42% required assistance with personal care and home-making
Social relationships and support
As noted, dying patients rely on their families to meet caregiving needs. However, the understanding of whether, and to what extent, dying patients receive emotional and social support from their family and larger social network is limited. There are validated instruments to assess social supports, such as whether patients have someone to talk to, someone to share their hopes and fears with, someone to have a good time with, etc.17, 41 In general, these support instruments have not been applied
Spiritual and existential beliefs
By spiritual and existential issues we mean how people find meaning, purpose, and value in their life; they can be specifically religious, but even people who have no religious faith or are not members of an organised religion have belief systems that give their lives meaning and purpose.12 Spiritual and existential issues become especially urgent for people confronting death and the attendant questions about the purpose of their life.10, 15, 16 The health-care profession has long recognised
Hopes and expectations
What patients imagine their prognosis to be, and what they expect of their future medical care and condition, can have an important impact on their decisions and experience. Patients who overestimate their life expectancy or think treatments are more effective than proven might put off advance-care planning and preparing themselves and their family for the end of their lives. Similarly, major personal and family events and milestones shape the quality of dying patients' experience and even the
Interventions for a good death
Of all the possible interventions, the ones that have been the most thoroughly studied are: withdrawal of life-sustaining treatments, advance-care planning, hospice, and euthanasia and physician-assisted suicide. We shall briefly review the importance of each of these interventions (table 2).
Withdrawal of life-sustaining treatments
The withdrawal or withholding of life-sustaining treatments is intended to remove inappropriate medical interventions.4, 5, 12 Over the past decade, physicians have become more comfortable stopping treatments and “letting nature takes its course”. In the USA and the Netherlands, most inpatients now die without resuscitation, and up to 90% of patients in intensive-care units and with cancer die without resuscitation.48, 49 In addition, in medical intensive-care units, as many as 90% of patients
Advance-care planning
When originally proposed 30 years ago, advance directives were short statements by patients wishing to avoid “heroic measures”.3, 12, 51 Such directives have evolved into three types of advance directives: 1) living wills in which patients specify their preferences for—-or to refuse—specific medical treatments; 2) proxy-designation forms in which patients appoint a surrogate who has the authority to make medical decisions for them if they become incompetent; and 3) values histories in which
Hospice
The first modern hospice, St Christopher's in Sydenham, UK, was founded in 1967, and the first hospice in the USA, the Connecticut Hospice, opened in 1974.1, 16 Hospice advocates a multidisciplinary approach that emphasises symptom control, attending to spiritual as well as physical needs, and care of the family unit.1, 12, 16 There are residential hospices and hospice units in hospitals; in the USA, the emphasis is on hospice care in the patient's home.
Since 1983 hospice has been covered by
Euthanasia and physician-assisted suicide
Over the past few years there has been growing interest in the possibility that euthanasia and physician-assisted suicide might provide a “good death”.6 The potential effects of these interventions on a good death are limited; they might provide some psychological reassurance or alleviate additional suffering by ending a life early. Importantly, euthanasia and physician-assisted suicide are not interventions aimed at the modifiable dimensions of the patient's experience, since they are used
Initiatives to make a good death the standard of care
To help bring the goal of a good death to all patients, making it the standard of care, initiatives need to be undertaken in four areas: research, training, system design, and reimbursement (panel 1). As noted, empiric research is needed on almost every aspect of death and dying. There are six high-priority areas for research. First, research that could help define the characteristics of those dying patients at high risk for suffering and doing poorly is needed. This would permit clinicians and
Advice to the clinician caring for dying patients
What should the clinician who seeks to ensure his or her dying patients receive a good death do? First, clinicians cannot take action to ensure a quality dying experience unless they know the conditions, concerns, and problems of their patients. Therefore, clinicians should adopt their own simple but comprehensive assessment tool to be used on all their patients.12, 17, 18, 19, 28, 44 The framework (figure) should help make this assessment systematic. Panel 2 provides a suggested list of
Conclusion
In 1998, we have the capacity to make a good death the standard of care in developed countries. Increasingly, society is focused on ensuring a good death; physicians have more powerful medications and other interventions to alleviate pain than ever before; clinicians are recognising the multidimensional aspects of dying and the importance of attending to concerns other than pain; hospice is widely available and increasingly used; advance-care planning is strongly endorsed; and medical schools,
References (62)
- et al.
Euthanasia and other medical decisions concerning the end of life
Lancet
(1991) - et al.
The Memorial symptom assessment scale: an instrument for the evaluation of symptom prevalence, characteristics and distress
Eur J Cancer
(1994) - et al.
Neuropsychiatric syndromes and psychological symptoms in patients with advanced cancer
J Pain Symptom Manage
(1995) - et al.
Increased suicide rate in cancer patients: a cohort study based on the Swedish cancer register
J Clin Epidemiol
(1989) - et al.
Serious physical illness as a stressor: effects on family use of medical services
Gen Hosp Psychiatry
(1992) - et al.
The MOS social support survey
Soc Sci Med
(1991) - et al.
Death takes a holiday: mortality surrounding major social occasions
Lancet
(1988) - et al.
An alternative in terminal care: results of the national hospice study
J Chronic Dis
(1986) - et al.
A randomised trial of hospice care
Lancet
(1984) - et al.
Euthanasia and physician-assisted suicide: attitudes and experiences of oncology patients, oncologists, and the public
Lancet
(1996)
Care of the dying
On death and dying
Due process of euthanasia: the living will—a proposal
Indiana Law J
Euthanasia: historical, ethical and empiric perspective
Arch Intern Med
Attitudes among NHS doctors to requests for euthanasia
BMJ
Euthanasia, physician-assisted suicide, and other medical practices involving the end of life in the Netherlands, 1990–1995
N Engl J Med
Palliative medicine curriculum
Caring for the dying: identification and promotion of physician competency
The hour of our death
Approaching death: improving care at the end of life
Physician-assisted suicide and euthanasia in Washington state
JAMA
A midwife through the dying process: stories of healing and hard choices at the end of life
The hospice movement: a better way of caring for the dying
The McGill quality of life questionnaire: a measure of quality of life appropriate for people with advanced disease: a preliminary study of validity and acceptability
Palliat Med
The Edmonton symptom assessment system (ESAS): a simple method for the assessment of palliative care patients
J Palliat Care
The nature of suffering and the goals of medicine
When palliative care fails to control suffering
J Palliat Care
Measurement of pain by subjective report
Clinical practice guideline number 9: management of cancer pain
Cited by (436)
The end-of-life care practices of emergency care nurses and the factors that influence these practices: An integrative review
2022, International Emergency NursingCitation Excerpt :The notion of a good death is consistent with the philosophy of holistic care: a death free from avoidable distress for patients, families, and caregivers [14–16]. A good death is consistent with the wishes of patients and families, and clinical, cultural, and ethical standards [14–16]. Philosophically, a good death is thought to be a death that mimics the circumstances of how an individual wanted to die [14–16].
End-of-life care in emergency departments: A national cross-sectional survey of emergency care nurses
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2021, Journal of Pain and Symptom ManagementWhat would it take to die well? A systematic review of systematic reviews on the conditions for a good death
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