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In medicine, nursing and the allied health professions, end-of-life care refers to health care, not only of patients in the final hours or days of their lives, but more broadly care of all those with a terminal illness or terminal condition that has become advanced, progressive and incurable.
Regarding cancer care the United States National Cancer Institute writes:
When a patient's health care team determines that the cancer can no longer be controlled, medical testing and cancer treatment often stop. But the patient's care continues. The care focuses on making the patient comfortable. The patient receives medications and treatments to control pain and other symptoms, such as constipation, nausea, and shortness of breath. Some patients remain at home during this time, while others enter a hospital or other facility. Either way, services are available to help patients and their families with the medical, psychological, and spiritual issues surrounding dying. A hospice often provides such services.The time at the end of life is different for each person. Each individual has unique needs for information and support. The patient's and family's questions and concerns about the end of life should be discussed with the health care team as they arise...
Unfortunately, physicians were not placed under the provisions of the 1991 Patient Self Determination Act (PSDA), passed by a bipartisan United States Congress at the request of the financial arm of Medicare in 1991. While the 1991 PSDA together with the 1986 Hospice Entitlement created another legal standard of care reimbursed out of the Medicare Purse, the physicians had no legal duty to seek informed consent for one or the other two legal standards of care, i.e., either Curative Care or Palliative Care/transition to Hospice Care in the last six months of life. Only, since 2010, have some few states passed new laws that somewhat compel treating physicians to seek informed consent for one standard of care as opposed to the other. Most of the United States, however, have not passed laws that compel physicians to seek informed consent for one or the other two legal standards of care reimbursed out of the people's Medicare Purse. Patients and their family members often want to know how long a person is expected to live. This is a hard question to answer. Factors such as where the cancer is located and whether the patient has other illnesses can affect what will happen. Although doctors may be able to make an estimate based on what they know about the patient, they might be hesitant to do so. Doctors may be concerned about over- or underestimating the patient's life span. They also might be fearful of instilling false hope or destroying a person's hope.
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 ."
“I think people think DNR means give up. They think DNR and hospice means you’re quitting. It’s more about accepting and embracing the next phase of life, even if it’s death. DNR does not mean do not treat and it does not mean do not care. It just means do not resuscitate by giving CPR, electric shocks or medications to restart the heart. If things go badly, there is a role in certain situations for letting the natural breakdown of the body occur," says Dr. Lauren Jodi Van Scoy, a board-certified internist who has spent hundreds of hours in the intensive care unit, where she has witnessed the manner in which many critically ill patients choose to die, and how sometimes such a decision is mired in upheaval when family members are forced to confront the inevitable.
In the 2014 Hospice appropriation, Medicare plans to run a trial in which Medicare/Medicaid patients will have a right to be on both Curative Care under Medicare and Palliative Care/Transition to Hospice at the SAME time. Under current 2013 administrative law, this is not possible and is actually illegal. This legal situation, NO right to both standards of care at the same time. has been law since 1986 and has resulted in patients being referred to palliative care/transition to Hospice by treating physicians much too late in the course of their terminal illnesses to save money and resources for Medicare and the private insurers.
It was anticipated in 1991 when the PSDA was passed into law that the states would implement the goals of the PSDA and Medicare/Medicaid patients would elect/choose to use the less expensive Hospice entitlement after receiving a terminal diagnosis from their treating physician who would then explain the Hospice option, also reimbursed under their Medicare insurance. Elderly and terminal Medicare/Medicaid patients would choose/elect to refuse expensive end of life treatments in ICU and CCU and shorten their suffering unto a certain death. Additionally, it was the vision of the 1991 PSDA over treatment for the profit motive would be greatly reduced. In 2013, however, US newspapers have carried stories of the prosecutions started by the United States Department of Justice and Health and Human Services of Cancer Clinics for fraud, claiming non beneficial over treatment for profit that is fraud under the federal false claims laws.
The Hospice/palliative care entitlement is elective and optional under existing Medicare administrative law of 2013 but if the trial is successful and Congress changes the law after the trials in 2014, the Hospice entitlement will be merely the end stage of Curative Care and an offer that can't be refused when the treating physician informs the terminal patient that curative care is no longer feasible.
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. It represent 22% of all medical spending in the United States, 18% of all non-Medicare spending, and 25 percent of all Medicaid spending for the poor.
The Congress of the USA had hoped that the 1991 Patient Self Determination Act together with the 1986 Hospice Care Entitlement that is reimbursed by Medicare would greatly reduce expensive end-of-life care in Intensive Care and Critical Units of US Acute Care Hospitals when elderly/disabled terminal patients on Medicare would freely choose to shorten their lives to shorten their suffering from terminal illnesses and die in their own personal residences or in nursing-home residences. However, since the physicians and for-profit clinics were not placed under the provisions of the 1991 PSDA and the states didn't implement the goals of the 1991 PSDA in state laws, the Hospice Entitlement paid for out of the Medicare Purse has failed to achieve the savings anticipated in the 1991 PSDA.
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 which required them to be there.
Care in the final days and hours of life
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), changes in heart rate, 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 which can arise in the last days and hours of a patient's life:
- Pain -Suffering from uncontrolled pain is a significant fear of those at end of life.
- Typically controlled using morphine or diamorphine; or other opioids.
- Delirium, terminal anguish, restlessness (e.g. thrashing, plucking, or twitching). Typically controlled using midazolam, or other benzodiazepines. 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 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 cyclizine; or other anti-emetics.
- Dyspnea (breathlessness)
- Typically controlled using morphine or diamorphine
Typical care plans, such as those based on the Liverpool Care Pathway for dying patients, will pre-authorise staff to give subcutaneous injections to address such symptoms as soon as they are needed, without needing to take time to seek further authorisation. Such injections are usually the preferred means of delivery, as it may become difficult for patients to swallow or to take pills orally. If repeated medication is needed, a syringe driver (called an infusion pump in the US) is likely to be used, to deliver a steady low dose of medication.
- Advance health care directive
- Palliative care
- Physician assisted suicide
- Robert Martensen
- End-of-Life Care: Questions and Answers, National Cancer Institute, US Institutes of Health. Reviewed 30 October 2002. Accessed 25 January 2010.
- Naila Francis - Dr. Lauren Jodi Van Scoy Poses Critical Questions About Death in First Book - PhillyBlurbs.com - The Intelligencer, July 10/11, 2011.
- Donald R Hoover, Stephen Crystal, Rizie Kumar, Usha Sambamoorthi, and 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. 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.
- 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
- 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
- NCI Factsheet: End-of-Life Care: Questions and Answers, 30 October 2002. Some material here has been adapted verbatim from the factsheet, which is identified as being in the public domain as a creation of federal government employees (NCI Web policies: Copyright and registered trademarks).
- 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
- LCP Sample hospital template, Marie Curie Palliative Care Institute, Liverpool. Version 11 - November 2005
- NCI PDQ: Last Days of Life: Symptom management, United States National Cancer Institute, Revised 9 March 2009
- 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
- John Ellershaw, Chris Ward (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
- 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.
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