End-of-life care (or EoLC) refers to health care, not only of a person in the final hours or days of their lives, but more broadly care of all those with a terminal condition that has become advanced, progressive, and incurable.
End-of-life care requires a range of decisions, including questions of palliative care, patients' right to self-determination (of treatment, life), medical experimentation, the ethics and efficacy of extraordinary or hazardous medical interventions, and the ethics and efficacy even of continued routine medical interventions. In addition, end-of-life often touches upon rationing and the allocation of resources in hospitals and national medical systems. Such decisions are informed both by technical, medical considerations, economic factors as well as bioethics. In addition, end-of-life treatments are subject to considerations of patient autonomy. "Ultimately, it is still up to patients and their families to determine when to pursue aggressive treatment or withdraw life support."
In most advanced countries, medical spending on those in the last twelve months of life makes up roughly 10% of total aggregate medical spending, and spending on those in the last three years of life can account for up to 25%. Whether or not a physician would be surprised if a person was dead within a set period of time was somewhat accurate at predicting end of life.
- 1 National perspectives
- 2 Non-medical care and support
- 3 Care in the final days and hours of life
- 4 Medical professionals and end-of-life care
- 5 See also
- 6 References
- 7 External links
In 2012, Statistics Canada's General Social Survey on Caregiving and care receiving found that 13% of Canadians (3.7 million) aged 15 and older reported that at some point in their lives they had provided end-of-life or palliative care to a family member or friend. For those in their 50s and 60s, the percentage was higher, with about 20% reporting having provided palliative care to a family member or friend. Women were also more likely to have provided palliative care over their lifetimes, with 16% of women reporting having done so, compared with 10% of men. These caregivers helped terminally ill family members or friends with personal or medical care, food preparation, managing finances or providing transportation to and from medical appointments.
End of life care has been identified by the UK Department of Health as an area where quality of care has previously been "very variable," and which has not had a high profile in the NHS and social care. To address this, a national end of life care programme was established in 2004 to identify and propagate best practice, and a national strategy document published in 2008. The Scottish Government has also published a national strategy.
In 2006 just over half a million people died in England, about 99% of them adults over the age of 18, and almost two-thirds adults over the age of 75. About three-quarters of deaths could be considered "predictable" and followed a period of chronic illness – for example heart disease, cancer, stroke, or dementia. In all, 58% of deaths occurred in an NHS hospital, 18% at home, 17% in residential care homes (most commonly people over the age of 85), and about 4% in hospices. However, a majority of people would prefer to die at home or in a hospice, and according to one survey less than 5% would rather die in hospital. A key aim of the strategy therefore is to reduce the needs for dying patients to have to go to hospital and/or to have to stay there; and to improve provision for support and palliative care in the community to make this possible. One study estimated that 40% of the patients who had died in hospital had not had medical needs that required them to be there.
In 2015 and 2010, the UK ranked highest globally in a study of end-of-life care. The 2015 study said "Its ranking is due to comprehensive national policies, the extensive integration of palliative care into the National Health Service, a strong hospice movement, and deep community engagement on the issue." The studies were carried out by the Economist Intelligence Unit and commissioned by the Lien Foundation, a Singaporean philanthropic organisation.
Spending on those in the last twelve months accounts for 8.5% of total aggregate medical spending in the United States.
When considering only those aged 65 and older, estimates show that about 27% of Medicare's annual $327 billion budget ($88 billion) in 2006 goes to care for patients in their final year of life. For the over 65s, between 1992-1996, spending on those in their last year of life represented 22% of all medical spending, 18% of all non-Medicare spending, and 25 percent of all Medicaid spending for the poor. These percentages appears to be falling over time, as in 2008, 16.8% of all medical spending on the over 65s went on those in their last year of life.
Non-medical care and support
Family and loved ones
Many times, family members are uncertain what they can do when a person is dying. Many gentle, familiar daily tasks, such as combing hair, putting lotion on delicate skin, and holding hands, are comforting and provide a meaningful method of communicating love to a dying person.
Family members may be suffering emotionally due to the impending death. Their own fear of death may affect their behavior. They may feel guilty about past events in their relationship with the dying person or feel that they have been neglectful. These common emotions can result in tension, fights between family members over decisions, worsened care, and sometimes (in what medical professionals call the "Daughter from California syndrome") a long-absent family member arrives while a patient is dying to demand inappropriately aggressive care.
Family members may also be coping with unrelated problems, such as physical or mental illness, emotional and relationship issues, or legal difficulties. These problems can limit their ability to be involved, civil, helpful, or present.
Spiritual care in end of life care
Pastoral/spiritual care is of particular significance in end of life care. 'In palliative care, responsibility for spiritual care is shared by the whole team, with leadership given by specialist practitioners such as pastoral care workers. The palliative care approach to spiritual care may, however, be transferred to other contexts and to individual practice.'
Care in the final days and hours of life
Fragmented, dysfunctional, or grieving families are often unable to make timely decisions that respect the patient's wishes and values. This can result in over-treatment, under-treatment, and other problems. For example, family members may differ over whether life extension or life quality is the main goal of treatment.
Family members may also be unable to grasp the inevitability of death and the risks and effects of medical and non-medical interventions. They may demand common treatments, such as antibiotics for pneumonia, or drugs to reduce high blood pressure without wondering whether that person might prefer dying quickly of pneumonia or a heart attack to a long-drawn-out decline in a skilled care facility. Some treatments, such as pureed foods for a person who has trouble swallowing or IV fluids for a person who is actively dying, seem harmless, but can significantly prolong the process of dying.
Signs that death may be near
- Drowsiness, increased sleep, and/or unresponsiveness (caused by changes in the patient's metabolism).
- Confusion about time, place, and/or identity of loved ones; restlessness; visions of people and places that are not present; pulling at bed linens or clothing (caused in part by changes in the patient's metabolism).
- Decreased socialization and withdrawal (caused by decreased oxygen to the brain, decreased blood flow, and mental preparation for dying).
- Decreased need for food and fluids, and loss of appetite (caused by the body's need to conserve energy and its decreasing ability to use food and fluids properly).
- Loss of bladder or bowel control (caused by the relaxing of muscles in the pelvic area).
- Darkened urine or decreased amount of urine (caused by slowing of kidney function and/or decreased fluid intake).
- Skin becoming cool to the touch, particularly the hands and feet; skin may become bluish in color, especially on the underside of the body (caused by decreased circulation to the extremities).
- Rattling or gurgling sounds while breathing, which may be loud (death rattle); breathing that is irregular and shallow; decreased number of breaths per minute; breathing that alternates between rapid and slow (caused by congestion from decreased fluid consumption, a buildup of waste products in the body, and/or a decrease in circulation to the organs).
- Turning of the head toward a light source (caused by decreasing vision).
- Increased difficulty controlling pain (caused by progression of the disease).
- Involuntary movements (called myoclonus), increased heart rate, hypertension followed by hypotension, and loss of reflexes in the legs and arms are additional signs that the end of life is near.
The following are some of the most common potential problems that can arise in the last days and hours of a patient's life:
- Typically controlled using morphine or, in the United Kingdom, diamorphine or other opioids.
- Delirium, terminal anguish, restlessness (e.g. thrashing, plucking, or twitching). Typically controlled using midazolam, or other benzodiazepines. Haloperidol is commonly used as well. Diseases symptoms may also sometimes be alleviated by rehydration, which may reduce the effects of some toxic drug metabolites.
- Respiratory tract secretions
- Saliva and other fluids can accumulate in the oropharynx and upper airways when patients become too weak to clear their throats, leading to a characteristic gurgling or rattle-like sound ("death rattle"). While apparently not painful for the patient, the association of the diseases symptom with impending death can create fear and uncertainty for those at the bedside. The secretions may be controlled using drugs such as scopolamine (hyoscine), glycopyrronium, or atropine. Rattle may not be controllable if caused by deeper fluid accumulation in the bronchi or the lungs, such as occurs with pneumonia or some tumours.
- Nausea and vomiting
- Typically controlled using haloperidol, cyclizine; or other anti-emetics.
- Dyspnea (breathlessness)
- Typically controlled using morphine or, in the United Kingdom, diamorphine
Typical care plans, such as those based on the Liverpool Care Pathway for dying patients, pre-authorise staff to address such diseases symptoms as soon as they are needed, without needing to take time to seek further authorisation. Subcutaneous injections are one preferred means of delivery when it has become difficult for patients to swallow or to take pills orally; and if repeated medication is needed, a syringe driver (called an infusion pump in the US) is often likely to be used, to deliver a steady low dose of medication.
Another means of medication delivery, available for use when the oral route is compromised, is a specialized catheter designed to provide comfortable and discreet administration of ongoing medications via the rectal route. The catheter was developed to make rectal access more practical and provide a way to deliver and retain liquid formulations in the distal rectum so that health practitioners can leverage the established benefits of rectal administration. Its small flexible silicone shaft allows the device to be placed safely and remain comfortably in the rectum for repeated administration of medications or liquids. The catheter has a small lumen, allowing for small flush volumes to get medication to the rectum. Small volumes of medications (under 15ml) improve comfort by not stimulating the defecation response of the rectum, and can increase the overall absorption of a given dose by decreasing pooling of medication and migration of medication into more proximal areas of the rectum where absorption can be less effective.
Medical professionals and end-of-life care
A study was conducted by Jessica Schmit from the University of Florida in 2016 about the level of comfort medical residents have with certain end-of-life care. Through this study it was found that residents received an inadequate amount of formal education on comfort-care and end-of-life care. In Schmit's study it was found that 61.9% of residents reported that their end of life conversations were "mostly unsupervised" or "never supervised", giving them very little guidance about how to do better in the future. Research is also being undertaken with regard to the role of Speech-Language Pathologists (SLPs) working in palliative and end-of-life care. Speech-Language Pathologists have been recognised as having an important role among adult  and paediatric populations  - though only recently has research begun to formalise this process.  Nurses also play an extremely important role in comfort care at the end of life. Nurses are able to explain in practical terms what is happening to the patient after the doctor has left. Nurses also work to advocate for the patients, as they spend a lot of time with them and typically know a great deal more about the patient's wishes, symptoms, and previous medical history. Nurses, doctors, and hospice workers are critical in helping both the patient and the family move through the death process, as well as the grief that follows after.
- Advance health care directive
- Death midwife
- Palliative care
- Children's palliative care
- Physician assisted suicide
- Robert Martensen
- Naila Francis - Dr. Lauren Jodi Van Scoy Poses Critical Questions About Death in First Book - PhillyBlurbs.com - The Intelligencer, July 10/11, 2011.
- French E; et al. (2017). "End-Of-Life Medical Spending In Last Twelve Months Of Life Is Lower Than Previously Reported". Health Affairs. 36 (7): 1211–1217. doi:10.1377/hlthaff.2017.0174.
- White, N; Kupeli, N; Vickerstaff, V; Stone, P (2 August 2017). "How accurate is the 'Surprise Question' at identifying patients at the end of life? A systematic review and meta-analysis". BMC Medicine. 15 (1): 139. doi:10.1186/s12916-017-0907-4. PMID 28764757.
- "General Social Survey - Caregiving and Care Receiving (GSS)". www23.statcan.gc.ca. Retrieved 2015-05-11.
- "Statistics Canada - End of life care, 2012". July 9, 2013. Retrieved May 11, 2015.
- NHS National End of Life Care Programme, official website
- End of Life Care Strategy: Promoting high quality care for all adults at the end of life, UK Department of Health, July 2008.
- Q&A: End of life care, BBC News, 26 November 2008
- 'Better' end of life care pledge, BBC News, 21 August 2008
- Living and Dying Well: A national action plan for palliative and end of life care in Scotland, Scottish Government, 2 October 2008
- Scots end-of-life plan launched as part of innovative palliative care strategy, Nursing Times, 14 October 2008.
- End of life care: 1. The current place and quality of end of life care, House of Commons Public Accounts Committee, 30 March 2009, paragraphs 1-3.
See also End of life care strategy, UK Department of Health, July 2008, paragraphs 1.1 and 1.7-1.14 (pages 26-27); and End of Life care, UK National Audit Office Comptroller and Auditor General's report, 26 November 2008, paragraphs 2.2-2.5 (page 15)
- End of Life care, UK National Audit Office Comptroller and Auditor General's report, 26 November 2008, paragraph 21 (page 7) and supporting study
- "Quality of Death Index 2015: Ranking palliative care across the world". The Economist Intelligence Unit. 6 October 2015. Retrieved 8 October 2015; "UK end-of-life care 'best in world'". BBC. 6 October 2015. Retrieved 8 October 2015.
- The Quality of Death: Ranking end-of-life care across the world, Economist Intelligence Unit, July 2010; Quality of death, Lien Foundation, July 2010; United States Tied for 9th Place in Economist Intelligence Unit's First Ever Global 'Quality of Death' Index, Lien Foundation press release; UK comes top on end of life care - report, BBC News, 15 July 2010
- Donald R Hoover; Stephen Crystal; Rizie Kumar; Usha Sambamoorthi; Joel C Cantor (December 1, 2002). "Medical Expenditures during the Last Year of Life: Findings from the 1992–1996 Medica0000re Current Beneficiary Survey". Health Service Research. 37 (6): 1625–1642. doi:10.1111/1475-6773.01113. PMC 1464043. PMID 12546289.
Last-year-of-life expenses constituted 22 percent of all medical, 26 percent of Medicare, 18 percent of all non-Medicare expenditures, and 25 percent of Medicaid expenditures.
- Julie Appleby. Debate surrounds end-of-life health care costs. USA Today, July 10/11, 2011.
- Hoover, D. R.; Crystal, S.; Kumar, R.; Sambamoorthi, U.; Cantor, J. C. (2002). "Medical Expenditures during the Last Year of Life: Findings from the 1992–1996 Medicare Current Beneficiary Survey". Health Services Research. 37 (6): 1625–1642. doi:10.1111/1475-6773.01113. PMC 1464043. PMID 12546289.
- De Nardi M, Jones JB, French E, McCauley J (2016). "Medical Spending of the US Elderly". Fiscal Studies. 37 (3–4): 717–747. doi:10.1111/j.1475-5890.2016.12106.
- Erickson, Karla A. (2013-01-01). How we die now: Intimacy and the work of dying. Temple University Press. pp. 128–131. ISBN 9781439908242. OCLC 832280964.
- "National Consensus Statement: Essential Elements for Safe and High-Quality End-of-Life Care" (PDF). Australian Commission on Safety and Quality in Healthcare. 2015. Retrieved 2016-03-22.
- Rumbled, Bruce (2003). "Caring for the spirit: lessons from working with the dying". Medical Journal of Australia. Retrieved 2016-03-22.
- Harrington, Samuel (18 November 2016). "A united family can make all the difference when someone is dying". Washington Post. Retrieved 2017-01-07.
- Erickson, Karla A. (2013-01-01). How we die now: Intimacy and the work of dying. Temple University Press. pp. 108–112. ISBN 9781439908242. OCLC 832280964.
- NCI Factsheet: End-of-Life Care: Questions and Answers, 30 October 2002. Some material here has been adapted verbatim from the fact sheet, which is identified as being in the public domain as a creation of federal government employees (NCI Web policies: Copyright and registered trademarks).
- Linda, L Emanuel; Frank D, Ferris; Charles F, von Gunten. "The Last Hours of Living: Practical Advice for Clinicians". Medscape. Archived from the original on 28 January 2017. Retrieved 17 November 2017.
- This list is based on the principal heading prompts in the Liverpool Care Pathway standard documentation template. A more detailed discussion of common symptoms and potential mitigation options can be found in the U.S. National Cancer Institute's PDQ Last Days of Life: Symptom management.
- Canadian Nurses Association. "Position Statement: Providing Care at The End of Life," 2008, p.3
- NHS. "Diamorphine (Diamorphine 5mg powder for solution for injection ampoules)". NHS. Retrieved 11 February 2015.
- LCP Sample hospital template, Marie Curie Palliative Care Institute, Liverpool. Version 11 - November 2005
- Vella-Brincat, J (2004). "Haloperidol in palliative care". Palliat Med. 18: 195–201. doi:10.1191/0269216304pm881oa. PMID 15198132.
- NCI PDQ: Last Days of Life: Symptom management, United States National Cancer Institute, Revised 9 March 2009
- De Boer AG, Moolenaar F, de Leede LG, Breimer DD (1982). "Rectal drug administration: clinical pharmacokinetic considerations". Clin Pharmacokinetics. 7 (4): 285–311. doi:10.2165/00003088-198207040-00002. PMID 6126289.
- Moolenaar F, Koning B, Huizinga T (1979). "Biopharmaceutics of rectal administration of drugs in man. Absorption rate and bioavailability of phenobarbital and its sodium salt from rectal dosage forms". International Journal of Pharmacaceutics. 4: 99–109. doi:10.1016/0378-5173(79)90057-7.
- "Chahda, L., Mathisen, B. A., & Carey, L. B. (2017). The role of speech-language pathologists in adult palliative care. International Journal of Speech-Language Pathology, 19(1), 58-68". International Journal of Speech-Language Pathology.
- "Krikheli, L., Mathisen, B. A., & Carey, L. B. (2017). Speech–language pathology in paediatric palliative care: A scoping review of role and practice. International Journal of Speech-Language Pathology, 20(5), 541-553". International Journal of Speech-Language Pathology.
- "Krikheli, L., Carey, L.B., Mathisen, B., Erickson, S., & Carey-Sargeant, C.L. (2018). Speech-language pathologists in paediatric palliative care: A Delphi study protocol. BMJ Supportive and Palliative Care, Published Online First: 15 November 2018. doi: 10.1136/bmjspcare-2018-001667". BMJ Supportive and Palliative Care.
- Schmit, J (2016). "Perspectives on death and dying: a study of resident comfort with End-of-life care". BMC Medical Education. 16: 1–6.
- End of Life Issues. MedlinePlus.
- EndLink - Resource for End of Life Care Education, Robert H. Lurie Comprehensive Cancer Center, Northwestern University
- End of life care, NHS Choices
- End of Life Care Strategy - promoting high quality care for all adults at the end of life, UK Department of Health, Publications policy and guidance
- Ellershaw John; Ward Chris (2003). "Care of the dying patient: the last hours or days of life". British Medical Journal. 326: 30–34. doi:10.1136/bmj.326.7379.30. PMC 1124925. PMID 12511460.
- Polly Mazanec, Julia Bartel (2002), Symptoms and Symptom Management, in Robert Kastenbaum (ed), Macmillan Encyclopedia of Death and Dying. New York: Macmillan Reference USA. ISBN 0-02-865689-X
- End Of Life: The Facts, Marie Curie Cancer Care
- End of life care in adults, Map of Medicine, updated 29 October 2010
- End-of-Life Decisions from the Institute for Good Medicine at the Pennsylvania Medical Society
- Survivorship A to Z: End-Of-Life
- Before I Die: Medical Care and Personal Choices. Produced by Thirteen/WNET, premiered on Public Broadcasting Service April 22, 1997. The program explores the medical, ethical, and social issues surrounding end-of-life care in America today.
- Palliative Care Policy Center (PCPC), formerly Center for Palliative Care Studies. Includes RAND Health white paper on Living Well at the End of Life: Adapting Health Care to Serious Chronic Illness in Old Age. plus other resources.
- One Man’s Quest to Change the Way We Die, story on J.B. Miller, Zen Hospice Guest House in San Francisco
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