End-of-life care

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."[1]

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%.[2] 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.[3]

National perspectives


In 2012, Statistics Canada's General Social Survey on Caregiving and care receiving[4] 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.[5]

United Kingdom

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,[6] and a national strategy document published in 2008.[7][8] The Scottish Government has also published a national strategy.[9][10][11]

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[12] – 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.[12] 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.[12] 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.[12][13]

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.[14][15]

United States

Spending on those in the last twelve months accounts for 8.5% of total aggregate medical spending in the United States.[2]

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.[16][17][18] 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.[16] 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.[19]

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.[20]

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.[21] '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.'[22]

Care in the final days and hours of life

Decision making

Fragmented, dysfunctional, or grieving families are often unable to make timely decisions that respect the patient's wishes and values.[23] 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.[24] 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.[24]

Signs that death may be near

The U.S. Government National Cancer Institute advises that the presence of some of the following signs may indicate that death is approaching:[25]

  • 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,[26] and loss of reflexes in the legs and arms are additional signs that the end of life is near.

Symptom management

The following are some of the most common potential problems that can arise in the last days and hours of a patient's life:[27]

Typically controlled using morphine or, in the United Kingdom, diamorphine[29][30] or other opioids.
Delirium, terminal anguish, restlessness (e.g. thrashing, plucking, or twitching). Typically controlled using midazolam,[30] other benzodiazepines, or levomepromazine. Haloperidol is commonly used as well.[31] Diseases symptoms may also sometimes be alleviated by rehydration, which may reduce the effects of some toxic drug metabolites.[32]
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.[32] The secretions may be controlled using drugs such as scopolamine (hyoscine),[30] glycopyrronium,[30] or atropine.[32] 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.[32]
Nausea and vomiting
Typically controlled using haloperidol,[31] cyclizine;[30] or other anti-emetics.
Dyspnea (breathlessness)
Typically controlled using morphine or, in the United Kingdom, diamorphine[29][30]

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.[33][34]

Other diseases symptoms that may occur, and may be mitigable to some extent, include cough, fatigue, fever, and in some cases bleeding.[32]

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 [35] and paediatric populations [36] - though only recently has research begun to formalise this process.[37] 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.[38] 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.

See also


  1. ^ Naila Francis - Dr. Lauren Jodi Van Scoy Poses Critical Questions About Death in First Book - PhillyBlurbs.com - The Intelligencer, July 10/11, 2011.
  2. ^ a b 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. PMID 28679807.
  3. ^ 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. PMC 5540432. PMID 28764757.
  4. ^ "General Social Survey - Caregiving and Care Receiving (GSS)". www23.statcan.gc.ca. Retrieved 2015-05-11.
  5. ^ "Statistics Canada - End of life care, 2012". July 9, 2013. Retrieved May 11, 2015.
  6. ^ NHS National End of Life Care Programme, official website
  7. ^ End of Life Care Strategy: Promoting high quality care for all adults at the end of life, UK Department of Health, July 2008.
  8. ^ Q&A: End of life care, BBC News, 26 November 2008
  9. ^ 'Better' end of life care pledge, BBC News, 21 August 2008
  10. ^ Living and Dying Well: A national action plan for palliative and end of life care in Scotland, Scottish Government, 2 October 2008
  11. ^ Scots end-of-life plan launched as part of innovative palliative care strategy, Nursing Times, 14 October 2008.
  12. ^ a b c d 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)
  13. ^ End of Life care, UK National Audit Office Comptroller and Auditor General's report, 26 November 2008, paragraph 21 (page 7) and supporting study
  14. ^ "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.
  15. ^ 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
  16. ^ a b 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 Services 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.
  17. ^ Julie Appleby. Debate surrounds end-of-life health care costs. USA Today, July 10/11, 2011.
  18. ^ 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.
  19. ^ 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.
  20. ^ 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.
  21. ^ "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.
  22. ^ Rumbled, Bruce (2003). "Caring for the spirit: lessons from working with the dying". Medical Journal of Australia. Retrieved 2016-03-22.
  23. ^ Harrington, Samuel (18 November 2016). "A united family can make all the difference when someone is dying". Washington Post. Retrieved 2017-01-07.
  24. ^ a b 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.
  25. ^ 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).
  26. ^ 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.
  27. ^ 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.
  28. ^ Canadian Nurses Association. "Position Statement: Providing Care at The End of Life," 2008, p.3
  29. ^ a b NHS. "Diamorphine (Diamorphine 5mg powder for solution for injection ampoules)". NHS. Retrieved 11 February 2015.
  30. ^ a b c d e f LCP Sample hospital template, Marie Curie Palliative Care Institute, Liverpool. Version 11 - November 2005
  31. ^ a b Vella-Brincat, J (2004). "Haloperidol in palliative care". Palliat Med. 18 (3): 195–201. doi:10.1191/0269216304pm881oa. PMID 15198132.
  32. ^ a b c d e NCI PDQ: Last Days of Life: Symptom management, United States National Cancer Institute, Revised 9 March 2009
  33. ^ 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.
  34. ^ 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 Pharmaceutics. 4 (2): 99–109. doi:10.1016/0378-5173(79)90057-7.
  35. ^ Chahda, Laura; Mathisen, Bernice A.; Carey, Lindsay B. (2017). "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. 19 (1): 58–68. doi:10.1080/17549507.2016.1241301. PMID 27762632.
  36. ^ Krikheli, Lillian; Mathisen, Bernice A.; Carey, Lindsay B. (2018). "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. 20 (5): 541–553. doi:10.1080/17549507.2017.1337225. PMID 28665209.
  37. ^ Krikheli, Lillian; Carey, Lindsay B.; Mathisen, Bernice A.; Erickson, Shane; Carey-Sargeant, Christa L. (2018). "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: bmjspcare-2018–001667. doi:10.1136/bmjspcare-2018-001667. PMID 30446492.
  38. ^ Schmit, J (2016). "Perspectives on death and dying: a study of resident comfort with End-of-life care". BMC Medical Education. 16: 1–6.

External links

April Saul

April Saul is an American journalist. She specializes in documentary photojournalism.

Saul has photographed and written for The Philadelphia Inquirer since 1981. In 1997, Saul, along with Inquirer reporter Michael Vitez and photographer Ron Cortes, was awarded the Pulitzer Prize in Explanatory Journalism for a series of articles on end-of-life care, telling the stories of terminally-ill patients who wished to die with dignity.

Catholic Health Services

Catholic Health Services is a ministry of the Roman Catholic Archdiocese of Miami, and the largest post acute provider in the southeast United States.It originated as Catholic Community Services, and as a result of the work Monsignor Bryan O. Walsh, later became Catholic Health and Rehabilitation Services.The service operates 26 facilities in Broward and Miami-Dade Counties. According to the 2007 Archdiocese of Miami Official Catholic Directory, the two Catholic hospitals, Mercy Hospital in Miami and Holy Cross Hospital in Ft. Lauderdale, served 1,278,516 people; three CHS health care centers served 7,896; three homes for the aged assisted 2,578 senior citizens; two residential care centers for children served 376; seven day-care centers served 1,885; two specialized homes assisted 383; twelve special centers for social services served 81,320; and eleven other institutions served 1,432 people in 2007. Catholic Hospice Care is a partnership between the Archdiocese of Miami and Mercy Hospital. It provides end of life care to terminally ill patients and their families throughout Miami-Dade and Monroe counties. Catholic Health Services also operates two Catholic cemeteries, Our Lady Queen of Heaven in Broward County and Our Lady of Mercy in Miami-Dade.

Death panel

"Death panel" is a political term that originated during the 2009 debate about federal health care legislation to cover the uninsured in the United States. Sarah Palin, former Republican Governor of Alaska, coined the term when she charged that proposed legislation would create a "death panel" of bureaucrats who would decide whether Americans—such as her elderly parents, or children with Down syndrome—were "worthy of medical care". Palin's claim has been referred to as the "death panel myth", as nothing in any proposed legislation would have led to individuals being judged to see if they were worthy of health care.Palin's spokesperson pointed to Section 1233 of bill HR 3200 which would have paid physicians for providing voluntary counseling to Medicare patients about living wills, advance directives, and end-of-life care options. Palin's claim was reported as false and criticized by the press, fact-checkers, academics, physicians, Democrats, and some Republicans. Some prominent Republicans backed Palin's statement. One poll showed that after it spread, about 85% of respondents were familiar with the charge and of those who were familiar with it, about 30% thought it was true. Owing to public concern, the provision to pay physicians for providing voluntary counseling was removed from the Senate bill and was not included in the law that was enacted, the 2010 Patient Protection and Affordable Care Act. In a 2011 statement, the American Society of Clinical Oncology bemoaned the politicization of the issue and said that the proposal should be revisited.For 2009, "death panel" was named as PolitiFact's "Lie of the Year", one of FactCheck's "whoppers", and the most outrageous new term by the American Dialect Society.

Death rattle

Terminal respiratory secretions (or simply terminal secretions), known colloquially as a death rattle, are sounds often produced by someone who is near death as a result of fluids such as saliva and bronchial secretions accumulating in the throat and upper chest. Those who are dying may lose their ability to swallow and may have increased production of bronchial secretions, resulting in such an accumulation. Usually, two or three days earlier, the symptoms of approaching death can be observed as saliva accumulates in the throat, making it very difficult to take even a spoonful of water. Related symptoms can include shortness of breath and rapid chest movement. While death rattle is a strong indication that someone is near death, it can also be produced by other problems that cause interference with the swallowing reflex, such as brain injuries.It is sometimes misinterpreted as the sound of the person choking to death, or alternatively, that they are gargling.


End-of-life may refer to:

End-of-life (product), a term used with respect to terminating the sale or support of goods and services

End-of-life care, medical care for patients with terminal illnesses or conditions that have become advanced, progressive and incurable

End of Life Vehicles Directive, European Community legislation


Hospice care is a type of care and philosophy of care that focuses on the palliation of a chronically ill, terminally ill or seriously ill patient's pain and symptoms, and attending to their emotional and spiritual needs. In Western society, the concept of hospice has been evolving in Europe since the 11th century. Then, and for centuries thereafter in Roman Catholic tradition, hospices were places of hospitality for the sick, wounded, or dying, as well as those for travelers and pilgrims. The modern concept of hospice includes palliative care for the incurably ill given in such institutions as hospitals or nursing homes, but also care provided to those who would rather spend their last months and days of life in their own homes. The first modern hospice care was created by Cicely Saunders in 1967.

In the United States the term is largely defined by the practices of the Medicare system and other health insurance providers, which make hospice care available, either in an inpatient facility or at the patient's home, to patients with a terminal prognosis who are medically certified at hospice onset to have less than six months to live. According to the NHPCO [National Hospice and Palliative Care Organization] 2012 report on facts and figures of Hospice care, 66.4% received care in their place of residence and 26.1% in a Hospice inpatient facility. In the late 1970s the U.S. government began to view hospice care as a humane care option for the terminally ill. In 1982 Congress initiated the creation of the Medicare Hospice Benefit which became permanent in 1986. In 1993, President Clinton installed hospice as a guaranteed benefit and an accepted component of health care provisions. Outside the United States, the term hospice tends to be primarily associated with the particular buildings or institutions that specialize in such care (although so-called "hospice at home" services may also be available). Outside the United States such institutions may similarly provide care mostly in an end-of-life setting, but they may also be available for patients with other specific palliative care needs. Hospice care also involves assistance for patients’ families to help them cope with what is happening and provide care and support to keep the patient at home. Although the movement has met with some resistance, hospice has rapidly expanded through the United Kingdom, the United States and elsewhere.

Hospice and palliative medicine

Hospice and palliative medicine is a formal subspecialty of medicine in the United States that focuses on symptom management, relief of suffering and end-of-life care.

In 2006, hospice and palliative medicine was officially recognized by the American Board of Medical Specialties, and is co-sponsored by

the American Boards of Internal Medicine


Family Medicine

Physical Medicine and Rehabilitation

Psychiatry and Neurology



Emergency Medicine


Obstetrics and Gynecology.Physicians who complete a residency in one of the co-sponsoring specialties are then eligible for further training in an ACGME-approved Hospice and Palliative Medicine fellowship program, after which they must pass the official examination to be board-certified in the subspecialty.

In 2007, the American Osteopathic Association Bureau of Osteopathic Specialists approved a Certificate of Added Qualifications (CAQ) in hospice and palliative medicine. By 2012 participants are the American Osteopathic Boards of

Internal Medicine

Family Medicine

Neurology and Psychiatry

Physical Medicine and Rehabilitation.Candidates are eligible for CAQ certification after achieving board-certification following an American Osteopathic Association-approved residency.

Hospice care in the United States

Hospice care in the United States is a type and philosophy of end-of-life care which focuses on the palliation of a terminally ill patient's symptoms. These symptoms can be physical, emotional, spiritual or social in nature. The concept of hospice as a place to treat the incurably ill has been evolving since the 11th century. Hospice care was introduced to the United States in the 1970s in response to the work of Cicely Saunders in the United Kingdom. This part of health care has expanded as people face a variety of issues with terminal illness. In the United States, it is distinguished by extensive use of volunteers and a greater emphasis on the patient's psychological needs in coming to terms with dying.

Under hospice, medical and social services are supplied to patients and their families by an interdisciplinary team of professional providers and volunteers, who take a patient-directed approach to managing illness. Generally, treatment is not diagnostic or curative, although the patient may choose some treatment options intended to prolong life, such as CPR. Most hospice services are covered by Medicare or other providers, and many hospices can provide access to charitable resources for patients lacking such coverage.

With practices largely defined by the Medicare system, a social insurance program in the United States, and other health insurance providers, hospice care is made available in the United States to patients of any age with any terminal prognosis who are medically certified to have less than six months to live. In 2007, hospice treatment was used by 1.4 million people in the United States. More than one-third of dying Americans use the service. Common misperceptions regarding the length of time a patient may receive hospice care and the kinds of illnesses covered may result in hospice being underutilized. Although most hospice patients are in treatment for less than thirty days, and many for less than one week, hospice care may be authorized for more than six months given a patient's condition.

Care may be provided in a patient's home or in a designated facility, such as a nursing home, hospital unit or freestanding hospice, with level of care and sometimes location based upon frequent evaluation of the patient's needs. The four primary levels of care provided by hospice are routine home care, continuous care, general inpatient, and respite care. Patients undergoing hospice treatment may be discharged for a number of reasons, including improvement of their condition and refusal to cooperate with providers, but may return to hospice care as their circumstances change. Providers are required by Medicare to provide to patients notice of pending discharge, which they may appeal.

In other countries, there may not be the same distinctions made between care of those with terminal illnesses and palliative care in a more general setting. In such countries, the term hospice is more likely to refer to a particular type of institution, rather than specifically to care in the final months or weeks of life. End-of-life care is more likely to be included in the general term "palliative care".

Ira Byock

Ira Robert Byock (born February 13, 1951, Newark, New Jersey) is an American physician, author, and advocate for palliative care. He is founder and chief medical officer of the Providence St. Joseph Health Institute for Human Caring in Torrance, California, and holds appointments as active emeritus professor of medicine and professor of community health and family medicine at the Geisel School of Medicine at Dartmouth. He was director of palliative medicine at Dartmouth–Hitchcock Medical Center, from 2003-14, and associate director for patient and family-centered care at the affiliated Norris-Cotton Cancer Center.

Dr. Byock's early career focused on emergency medicine and rural practice in parallel with an interest in hospice care dating back to 1978 when the field was just beginning to be established. After 15 years of practice of emergency medicine, mostly in Montana, he focused on palliative and hospice care and the lived experience of people who were seriously ill. He was principal investigator and founder of the Missoula Demonstration Project and national director for the Robert Wood Johnson Promoting Excellence in End-of-Life Care initiative.

Dr. Byock's books include Dying Well (Riverhead, 1997), The Four Things That Matter Most (Simon & Schuster, 2004, 2014), and The Best Care Possible (Avery, 2012). He is author or coauthor of more than 100 scholarly journal articles and book chapters, on topics ranging from clinical tools and techniques, to personal reflections, to policy agenda statements and position papers. He is also frequently published in trade newspapers, online and print magazines. Dr. Byock has appeared as a featured guest on numerous national television and radio programs, including NPR: “Talk of the Nation” (March 1997, August 1997, 2009 & 2012); “All Things Considered” (June 1997, November 1997, March 2009) and “Fresh Air” (1997); American Public Media: “On Being”; CBS 60 Minutes (November 2009, Oct 2014); ABC Nightline; and PBS NewsHour (August 2010, October 2014, August 2015).


Ishin-denshin (以心伝心) is a Japanese idiom which denotes a form of interpersonal communication through unspoken mutual understanding. This four-character compound (or yojijukugo) literally translates as "what the mind thinks, the heart transmits". Sometimes translated into English as "telepathy" or "sympathy", ishin-denshin is also commonly rendered as "heart-to-heart communication" or "tacit understanding".Although silent understanding is generally recognized as a universal human phenomenon, the term ishin-denshin is often used to convey a style of nonverbal communication between two people that is felt by some Japanese to be characteristic of Japanese culture. Whereas the Japanese concept of haragei denotes a deliberate form of nonverbal communication, ishin-denshin refers to a passive form of shared understanding. Ishin-denshin is traditionally perceived by the Japanese as sincere, silent communication via the heart or belly (i.e. symbolically from the inside, uchi), as distinct from overt communication via the face and mouth (the outside, soto), which is seen as being more susceptible to insincerities. The introduction of this concept to Japan (via China) is related to the traditions of Zen Buddhism, where the term ishin-denshin refers to direct mind transmission. Zen Buddhism tradition, in turn, draws the concept of ishin-denshin from the first Dharma transmission between Gautama Buddha and Mahākāśyapa in the Flower Sermon.Ishin-denshin, or non-verbal communication, continues to influence aspects of contemporary Japanese culture and ethics, ranging from business practices to end-of-life care.

John A. Hartford Foundation

The John A. Hartford Foundation (JAHF), based in New York City, is a private, nonpartisan, national philanthropy dedicated to improving the care of older adults. For more than three decades, the organization has been the leader in building a field of experts in aging and testing and replicating innovative approaches to care. The Foundation has three priority areas: creating age-friendly health systems, supporting family caregivers, and improving serious illness and end-of-life care. Working with its grantees, the Foundation strives to change the status quo and create a society where older adults can continue their vital contributions.

The Foundation's vision is a nation where all older adults receive high-value evidence-based health care, are treated with respect and dignity, and have their goals and preferences honored.

Liverpool Care Pathway for the Dying Patient

The Liverpool Care Pathway for the Dying Patient (LCP) was a care pathway in the United Kingdom (excluding Wales) covering palliative care options for patients in the final days or hours of life. It was developed to help doctors and nurses provide quality end-of-life care, to transfer quality end-of-life care from the hospice to hospital setting. Now discredited, the LCP was widely abused as a 'tick box exercise', with patients being casually assessed as terminal, heavily sedated, and denied water so the diagnosis became self-fulfilling. Hospitals were also provided cash incentives to achieve targets for the number of patients placed on the LCP.The Liverpool Care Pathway was developed by Royal Liverpool University Hospital and the Marie Curie Palliative Care Institute in the late 1990s for the care of terminally ill cancer patients. The LCP was then extended to include all patients deemed dying.

Its inflexible application by nursing staff of Liverpool Community Health NHS Trust was subject to scrutiny after the poor care delivered to a relative of Rosie Cooper Member of Parliament.

While the initial reception was positive, it was heavily criticised in the media in 2009 and 2012 following the practical application by Liverpool Community Health care staff.

In July 2013, the Department of Health released a statement which stated the use of the LCP should be "phased out over the next 6-12 months and replaced with an individual approach to end of life care for each patient". However, The Daily Telegraph reported that the programme was just rebranded and that its supposed replacement would "perpetuate many of its worst practices, allowing patients to suffer days of dehydration, or to be sedated, leaving them unable to even ask for food or drink."

Medication discontinuation

Medication discontinuation is the ceasing of a medication treatment for a patient by either the clinician or the patient themself. When initiated by the clinician, it is known as deprescribing. Medication discontinuation is an important medical practice that may be motivated by a number of reasons:

Reducing polypharmacy

Reducing health expenditure

Improving quality of life by ceasing medications with potential adverse effects or where the indication for a medical treatment may have changed

Reflect changes in evidence that support a treatment

Reflecting changes in treatment goals, such as a move to end-of-life care.Unlike the prescribing of medications, appropriate discontinuation has not attracted nearly as much attention or interest.

Michael Vitez

Michael Vitez (born April 11, 1957) is an American journalist and author.

Vitez has written for The Philadelphia Inquirer since 1985 and is known for his human-interest stories. In 1997, Vitez, along with Inquirer photographers April Saul and Ron Cortes, was awarded the Pulitzer Prize in Explanatory Journalism for a series of articles he wrote on end-of-life care, telling the stories of terminally ill patients who wished to die with dignity.


Midazolam, marketed under the trade name Versed, among others, is a medication used for anesthesia, procedural sedation, trouble sleeping, and severe agitation. It works by inducing sleepiness, decreasing anxiety, and causing a loss of ability to create new memories. It is also useful for the treatment of seizures. Midazolam can be given by mouth, intravenously, or injection into a muscle, by spraying into the nose, or through the cheek. When given intravenously, it typically begins working within five minutes; when injected into a muscle, it can take fifteen minutes to begin working. Effects last for between one and six hours.Side effects can include a decrease in efforts to breathe, low blood pressure, and sleepiness. Tolerance to its effects and withdrawal syndrome may occur following long-term use. Paradoxical effects, such as increased activity, can occur especially in children and older people. There is evidence of risk when used during pregnancy but no evidence of harm with a single dose during breastfeeding. It belongs to the benzodiazepine class of drugs and works by increasing the activity of the GABA neurotransmitter in the brain.Midazolam was patented in 1974 and came into medical use in 1982. It is on the World Health Organization's List of Essential Medicines, the most effective and safe medicines needed in a health system. Midazolam is available as a generic medication and is not very expensive. The wholesale cost in the developing world of a vial is about US$0.35. In many countries, it is a controlled substance.

Palliative care

Palliative care is an interdisciplinary approach to specialized medical and nursing care for people with life-limiting illnesses. It focuses on providing relief from the symptoms, pain, physical stress, and mental stress at any stage of illness. The goal is to improve quality of life for both the person and their family. Evidence as of 2016 supports palliative care's efficacy in the improvement of a patient's quality of life.Palliative care is provided by a team of physicians, nurses, physiotherapists, occupational therapists, speech-language pathologists and other health professionals who work together with the primary care physician and referred specialists and other hospital or hospice staff to provide additional support. It is appropriate at any age and at any stage in a serious illness and can be provided as the main goal of care or along with curative treatment. Although it is an important part of end-of-life care, it is not limited to that stage. Palliative care can be provided across multiple settings including in hospitals, at home, as part of community palliative care programs, and in skilled nursing facilities. Interdisciplinary palliative care teams work with people and their families to clarify goals of care and provide symptom management, psycho-social, and spiritual support.

Physicians sometimes use the term palliative care in a sense meaning palliative therapies without curative intent, when no cure can be expected (as often happens in late-stage cancers). For example, tumor debulking can continue to reduce pain from mass effect even when it is no longer curative. A clearer usage is palliative, noncurative therapy when that is what is meant, because palliative care can be used along with curative or aggressive therapies.

Medications and treatments are said to have a palliative effect if they relieve symptoms without having a curative effect on the underlying disease or cause. This can include treating nausea related to chemotherapy or something as simple as morphine to treat the pain of broken leg or ibuprofen to treat pain related to an influenza infection.

Terminal illness

Terminal illness or end-stage disease is an incurable disease that cannot be adequately treated and is reasonably expected to result in the death of the patient. This term is more commonly used for progressive diseases such as cancer or advanced heart disease than for trauma. In popular use, it indicates a disease that will progress until death with near absolute certainty, regardless of treatment. A patient who has such an illness may be referred to as a terminal patient, terminally ill or simply terminal. There is no standardized life expectancy for a patient to be considered terminal, although it is generally months or less. Life expectancy for terminal patients is a rough estimate given by the physician based on previous data and does not always reflect true longevity. An illness which is lifelong but not fatal is a chronic condition.

Terminal patients have options for disease management after diagnosis. Examples include caregiving, continued treatment, hospice care, and physician-assisted suicide. Decisions regarding management are made by the patient and his or her family, although medical professionals may give recommendations or more about the services available to terminal patients.Lifestyle after diagnosis largely varies depending on management decisions and also the nature of the disease, and there may be living restrictions depending on the condition of the patient. Oftentimes, terminal patients may experience depression or anxiety associated with oncoming death, and family and caregivers may struggle with psychological burdens as well. Psychotherapeutic interventions may help alleviate some of these burdens, and is often incorporated in palliative care.Because terminal patients are aware of their oncoming deaths, they have more time to prepare advance care planning, such as advance directives and living wills, which have been shown to improve end-of-life care. While death cannot be avoided, patients can still strive to die a good death.

University of Toronto Joint Centre for Bioethics

The University of Toronto Joint Centre for Bioethics, or JCB, is an academic research centre located on the downtown campus of the University of Toronto in Toronto, Ontario, Canada. The Joint Centre for Bioethics is a partnership between the University and 15 affiliated health care organizations in the Greater Toronto Area. The centre studies ethical, health-related topics through research, educational and clinical activities that aim to improve the standard of health care at national and international levels. The centre consists of a network of over 180 multidisciplinary professionals, approximately 30 of whom work full-time in bioethics, representing the largest multi-disciplinary group of in-hospital bioethicists in Canada.In 2002, the centre was designated the first World Health Organization collaborating centre in bioethics in 15 years.It was founded as the Centre for Bioethics in the 1980s by Dr. Frederick Lowy, then Dean of the Faculty of Medicine at the University of Toronto, who also served as the centre's first Director. In partnership with four Toronto hospitals, the Joint Centre for Bioethics was created in 1995, headed by Dr. Peter A. Singer, who served as Director until 2006. The Director of the centre is Dr. Jennifer Gibson.

Ásgeir Helgason

Ásgeir R. Helgason (born 1957) is an Icelandic scientist working at Karolinska Institutet in Sweden. Since 2002 he has been an associate professor in psychology at the Departments of Oncology-Pathology and Public Health at the Karolinska Institutet and Reykjavik University, Iceland.

He is best known for his population based research on sexual function and emotional isolation in elderly men and prostate cancer patients, patient trade-off and his work on smoking cessation and quitlines. Helgason was a prime mover in the establishment of the Swedish and Icelandic national quitlines for smoking cessation (1998) and responsible for their development. He was also engaged in the development of a similar telephone based proactive treatment for people who seek help for controlling their alcohol consumption (alcohol quitline).Other work includes research on motivational interviewing and palliative care

Followed by an ethical analysis of facilitating death talk in end-of-life careÁsgeir has two sons, Hugi and Muni, after Odin's ravens Huginn and Muninn. His brother-in-law is writer and humorist Tim Moore, his father is scientist Helgi Valdimarsson and he is a brother of scientist Agnar Helgason.

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