Difference between revisions of "Hospice" - New World Encyclopedia

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[[File:St. Christopher's Hospice.jpg|thumb|right|250px|St Christopher's Hospice in [[London]], widely considered the first modern hospice]]
 
[[File:St. Christopher's Hospice.jpg|thumb|right|250px|St Christopher's Hospice in [[London]], widely considered the first modern hospice]]
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'''Hospice''' care is a type of health care that focuses on the [[palliative care|palliation]] of a [[Terminal illness|terminally ill]] patient's pain and symptoms and attending to their emotional and spiritual needs at the end of life. Hospice care prioritizes comfort and quality of life by reducing pain and suffering. Hospice care provides an alternative to therapies focused on life-prolonging measures that may be arduous, likely to cause more symptoms, or are not aligned with a person's goals.
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'''Hospice''' care is a type of [[health care]] that focuses on the [[palliative care|palliation]] of a [[Terminal illness|terminally ill]] patient's pain and symptoms, while attending to their emotional and spiritual needs at the end of their life. Hospice care prioritizes comfort and quality of life by reducing pain and suffering, providing an alternative to therapies focused on life-prolonging measures that may be arduous, likely to cause more symptoms, or are not aligned with a person's goals. The development of such end of life care balances the efforts of modern medicine to find ways to prolong life, regardless of the quality of life.  
  
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[[Hospice care in the United States]] is largely defined by the practices of the [[Medicare (United States)|Medicare]] system and other [[health insurance]] providers, which cover inpatient or at home hospice care for patients with terminal diseases who are estimated to live six months or less. Hospice care under the Medicare Hospice Benefit requires documentation from two physicians estimating a person has less than six months to live if the disease follows its usual course. Hospice benefits includes access to a multidisciplinary treatment team specialized in end of life care and can be accessed in the home, long term care facility or the hospital.
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[[Hospice care in the United States]] is largely defined by the practices of the [[Medicare (United States)|Medicare]] system and other [[health insurance]] providers, which cover inpatient or at home hospice care for patients with terminal diseases who are estimated to live six months or less. Hospice benefits includes access to a multidisciplinary treatment team specialized in end of life care and can be accessed in the home, long term care facility, or the hospital.
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Outside the United States, the term tends to be primarily associated with the particular buildings or institutions that specialize in such care. Such institutions may similarly provide care mostly in an end-of-life setting, but they may also be available for patients with other palliative care needs. Hospice care includes assistance for patients' families to help them cope with what is happening and provide care and support to keep the patient at home.
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Outside the United States, the term tends to be primarily associated with the particular buildings or institutions that specialize in such care. Hospice care includes assistance for patients' families to help them cope and provide care and support to keep the patient at home if possible. Bereavement counseling for the family is also included as well as spiritual guidance in accordance with their faith.  
  
 
== Philosophy ==
 
== Philosophy ==
 
The goal of hospice care is to prioritize comfort, quality of life, and individual wishes. How comfort is defined is up to each individual or, if the patient is incapacitated, the patient's family. This can include addressing physical, emotional, spiritual and/or social needs. In hospice care, patient-directed goals are integral and interwoven throughout the care.<ref>Anne Osborne Kilpatrick and James A. Johnson (eds.), ''Handbook of Health Administration and Policy'' (CRC Press, 1998).</ref> Hospices typically do not perform treatments that are meant to diagnose or cure an illness but also do not include treatments that hasten death.<ref name=Understanding/>
 
The goal of hospice care is to prioritize comfort, quality of life, and individual wishes. How comfort is defined is up to each individual or, if the patient is incapacitated, the patient's family. This can include addressing physical, emotional, spiritual and/or social needs. In hospice care, patient-directed goals are integral and interwoven throughout the care.<ref>Anne Osborne Kilpatrick and James A. Johnson (eds.), ''Handbook of Health Administration and Policy'' (CRC Press, 1998).</ref> Hospices typically do not perform treatments that are meant to diagnose or cure an illness but also do not include treatments that hasten death.<ref name=Understanding/>
  
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The modern hospice concept is focused on "palliative care," a term coined by Canadian physician [[Balfour Mount]] to describe an interdisciplinary medical caregiving approach aimed at optimizing quality of life and mitigating suffering among people with serious, complex illness. Mount created the first palliative care ward at the Royal-Victoria Hospital in [[Montreal]] in 1973.  
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The modern hospice concept is focused on "[[palliative care]]," a term coined by Canadian physician [[Balfour Mount]] to describe an interdisciplinary medical caregiving approach aimed at optimizing quality of life and mitigating suffering among people with serious, complex illness. Mount created the first palliative care ward at the Royal-Victoria Hospital in [[Montreal]] in 1973.  
  
 
Hospice care provides palliative care for the incurably ill who are expected to die within six months. In hospice care, the main guardians are the family care giver(s) and a hospice nurse/team who make periodic visits. Hospice can be administered in a nursing home, hospice building, or sometimes a hospital; however, it is most commonly practiced in the home.<ref>[https://www.webmd.com/palliative-care/difference-palliative-hospice-care#1 What's the Difference Between Palliative Care and Hospice Care?] ''WebMD''. Retrieved September 19, 2020.</ref>
 
Hospice care provides palliative care for the incurably ill who are expected to die within six months. In hospice care, the main guardians are the family care giver(s) and a hospice nurse/team who make periodic visits. Hospice can be administered in a nursing home, hospice building, or sometimes a hospital; however, it is most commonly practiced in the home.<ref>[https://www.webmd.com/palliative-care/difference-palliative-hospice-care#1 What's the Difference Between Palliative Care and Hospice Care?] ''WebMD''. Retrieved September 19, 2020.</ref>
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===Early development===
 
===Early development===
 
[[File:Lille hospice comtesse int.jpg|thumb|250px|left|The Hospice Comtesseis, a seventeenth-century hospice in the Old Town area of Lille, France, first built in 1236 by Joan, Countess of Flanders. It is now a museum on the history of the hospice.]]  
 
[[File:Lille hospice comtesse int.jpg|thumb|250px|left|The Hospice Comtesseis, a seventeenth-century hospice in the Old Town area of Lille, France, first built in 1236 by Joan, Countess of Flanders. It is now a museum on the history of the hospice.]]  
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The word "hospice" derives from Latin ''hospitum'', meaning hospitality or place of rest and protection for the ill and weary.<ref name=Understanding> Katherine Marshall and Deborah Hale, [https://www.nursingcenter.com/journalarticle?Article_ID=4201888&Journal_ID=2695880&Issue_ID=4201719 Understanding Hospice] ''Home Healthcare Now'' 35(7) (July/August 2017): 396-397. Retrieved September 19, 2020.</ref> In Western society, the concept of hospice began evolving in Europe in the eleventh century. In [[Catholic Church|Roman Catholic]] tradition, hospices were places of hospitality for the sick, wounded, or dying, as well as for travelers and pilgrims.  
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The word "hospice" derives from Latin ''hospitum'', meaning hospitality or place of rest and protection for the ill and weary.<ref name=Understanding> Katherine Marshall and Deborah Hale, [https://www.nursingcenter.com/journalarticle?Article_ID=4201888&Journal_ID=2695880&Issue_ID=4201719 Understanding Hospice] ''Home Healthcare Now'' 35(7) (July/August 2017): 396-397. Retrieved September 19, 2020.</ref> In Western society, the concept of hospice began evolving in Europe in the eleventh century. In [[Catholic Church|Roman Catholic]] tradition, hospices were places of hospitality for the sick, wounded, or dying, as well as for travelers and [[pilgrimage|pilgrim]]s.  
  
 
Historians believe the first hospices originated in [[Malta]] around 1065, dedicated to caring for the ill and dying en route to and from the Holy Land.<ref name=Moscrop>Janet Moscrop and Joy Robbins, ''Caring for the Dying Patient and the Family'' (Springer, 1995, ISBN 978-1565933286).</ref> The rise of the European [[Crusades|Crusading movement]] in the 1090s placed the incurably ill into places dedicated to treatment.<ref name=Connor>Stephen R. Connor, ''Hospice: Practice, Pitfalls, and Promise'' (Routledge, 1997, ISBN 978-1560325123). </ref>  
 
Historians believe the first hospices originated in [[Malta]] around 1065, dedicated to caring for the ill and dying en route to and from the Holy Land.<ref name=Moscrop>Janet Moscrop and Joy Robbins, ''Caring for the Dying Patient and the Family'' (Springer, 1995, ISBN 978-1565933286).</ref> The rise of the European [[Crusades|Crusading movement]] in the 1090s placed the incurably ill into places dedicated to treatment.<ref name=Connor>Stephen R. Connor, ''Hospice: Practice, Pitfalls, and Promise'' (Routledge, 1997, ISBN 978-1560325123). </ref>  
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===Modern hospice care===
 
===Modern hospice care===
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The first modern hospice care was created by [[Cicely Saunders]] in 1967. [[Dame]] Cicely Saunders was a British [[registered nurse]] whose chronic health problems forced her to pursue a career in [[medical social work]]. The relationship she developed with a dying [[Poland|Polish]] refugee helped solidify her ideas that terminally ill patients needed compassionate care to help address their fears and concerns as well as [[palliative]] comfort for physical symptoms.<ref name=Poor>Belinda Poor and Gail P. Poirrier, ''End of Life Nursing Care'' (Jones & Bartlett, 2001).</ref> After the refugee's death, Saunders began volunteering at St Luke's Home for the Dying Poor, where a physician told her that she could best influence the treatment of the terminally ill as a [[physician]].<ref name=Poor/> Saunders entered [[medical school]] while continuing her volunteer work at St. Joseph's. When she completed her degree in 1957, she took a position there.<ref name=Poor/>
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The first modern hospice care was created by [[Cicely Saunders]] in 1967. [[Dame]] Cicely Saunders was a British registered [[nurse]] whose chronic health problems forced her to pursue a career in medical [[social work]]. The relationship she developed with a dying [[Poland|Polish]] [[refugee]] helped solidify her ideas that terminally ill patients needed compassionate care to help address their fears and concerns as well as [[palliative]] comfort for physical symptoms.<ref name=Poor>Belinda Poor and Gail P. Poirrier, ''End of Life Nursing Care'' (Jones & Bartlett, 2001).</ref> After the refugee's death, Saunders began volunteering at St Luke's Home for the Dying Poor, where a physician told her that she could best influence the treatment of the terminally ill as a [[physician]].<ref name=Poor/> Saunders entered [[medical school]] while continuing her volunteer work at St. Joseph's. When she completed her degree in 1957, she took a position there.<ref name=Poor/>
  
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Saunders emphasized focusing on the patient rather than the disease and introduced the notion of "total pain,"<ref>David Clark, [http://eprints.gla.ac.uk/56632/ Total Pain: The Work of Cicely Saunders and the Hospice Movement] ''American Pain Society Bulletin'' 10(4) (2000): 13-15. Retrieved September 19, 2020.</ref> which included psychological and spiritual as well as physical discomfort. She experimented with [[opioid]]s for controlling physical pain. She also considered the needs of the patient's family. She developed many foundational principles of modern hospice care at St Joseph's.<ref name=Connor />  
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Saunders emphasized focusing on the patient rather than the disease and introduced the notion of "total pain," which included psychological and spiritual as well as physical discomfort.<ref>David Clark, [http://eprints.gla.ac.uk/56632/ Total Pain: The Work of Cicely Saunders and the Hospice Movement] ''American Pain Society Bulletin'' 10(4) (2000): 13-15. Retrieved September 19, 2020.</ref> She experimented with [[opioid]]s for controlling physical pain, and also considered the needs of the patient's family. She developed many foundational principles of modern hospice care at St Joseph's.<ref name=Connor />  
  
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Saunders disseminated her philosophy internationally in a series of tours of the United States that began in 1963.<ref name=Spratt>John S. Spratt, Rhonda L. Hawley, and Robert E. Hoye (eds.), ''Home Health Care: Principles and Practices'' (Routledge, 1996, ISBN 978-1884015939).</ref><ref>Sandra B. Lewenson and Eleanor Krohn Herrman (eds.), ''Capturing Nursing History'' (Springer Publishing Company, 2007, ISBN 978-0826115669).</ref> In 1967, Saunders opened [[St Christopher's Hospice]] in South London, [[England]]. [[Florence Wald]], the dean of [[Yale School of Nursing]] who had heard Saunders speak in America, spent a month working with Saunders there in 1969 before bringing the principles of modern hospice care back to the United States.<ref name=Connor/> In 1974, Wald led the founding the first hospice in the United States at the Connecticut Hospice, located in Branford, Connecticut. Later in life, Wald became interested in the provision of hospice care within [[prison]]s.<ref>[https://www.womenofthehall.org/inductee/florence-wald/ Florence Wald] ''National Women's Hall of Fame''. Retrieved September 19, 2020. </ref>  
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Saunders disseminated her philosophy internationally in a series of tours of the United States beginning in 1963.<ref name=Spratt>John S. Spratt, Rhonda L. Hawley, and Robert E. Hoye (eds.), ''Home Health Care: Principles and Practices'' (Routledge, 1996, ISBN 978-1884015939).</ref><ref>Sandra B. Lewenson and Eleanor Krohn Herrman (eds.), ''Capturing Nursing History'' (Springer Publishing Company, 2007, ISBN 978-0826115669).</ref>
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At about the same time, in 1965, Swiss [[psychiatrist]] [[Elisabeth Kübler-Ross]] began to consider social responses to terminal illness, which she found inadequate at the Chicago hospital where her American physician husband was employed. Her 1969 best-seller, ''[[On Death and Dying]]'', influenced the medical profession's response to the terminally ill.<ref>Laura Newman, [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC516672/ Elisabeth Kübler-Ross] ''British Medical Journal'' 329(7466) (2004): 627. Retrieved September 21, 2020.</ref> Along with Saunders and other [[thanatology]] pioneers, she helped to focus attention on the types of care available to the dying.<ref name=Spratt/>
  
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Another early hospice program in the United States, Alive Hospice, was founded in [[Nashville, Tennessee]], on November 14, 1975.<ref>[https://www.alivehospice.org/about/about-alive About Alive] ''Alive Hospice''. Retrieved September 21, 2020.</ref> By 1978 the National Hospice Organization had been formed, and by 1979, a president, Ann G. Blues, had been elected and principles of hospice care had been addressed.<ref>Ann Goben Blues, ''Hospice and Palliative Nursing Care'' (Grune and Stratton, 1984, ISBN 978-0808915775).</ref>  
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In 1967, Saunders opened [[St Christopher's Hospice]] in South London, [[England]]. [[Florence Wald]], the dean of [[Yale School of Nursing]] who had heard Saunders speak in America, spent a month working with Saunders there in 1969 before bringing the principles of modern hospice care back to the United States.<ref name=Connor/> In 1974, Wald led the founding of the first hospice in the United States, the Connecticut Hospice located in Branford, Connecticut. Later in life, Wald became interested in the provision of hospice care within [[prison]]s.<ref>[https://www.womenofthehall.org/inductee/florence-wald/ Florence Wald] ''National Women's Hall of Fame''. Retrieved September 19, 2020. </ref>  
  
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At about the same time that Saunders was disseminating her theories and developing her hospice, in 1965, Swiss [[psychiatrist]] [[Elisabeth Kübler-Ross]] began to consider social responses to terminal illness, which she found inadequate at the Chicago hospital where her American physician husband was employed. Her 1969 best-seller, ''[[On Death and Dying]]'', influenced the medical profession's response to the terminally ill.<ref>Laura Newman, [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC516672/ Elisabeth Kübler-Ross] ''British Medical Journal'' 329(7466) (2004): 627. Retrieved September 21, 2020.</ref> Along with Saunders and other [[thanatology]] pioneers helped to focus attention on the types of care available to them.<ref name=Spratt/>
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Another early hospice program in the United States, Alive Hospice, was founded in [[Nashville, Tennessee]], on November 14, 1975.<ref>[https://www.alivehospice.org/about/about-alive About Alive] ''Alive Hospice''. Retrieved September 21, 2020.</ref> By 1978 the National Hospice Organization had been formed, and by 1979 Ann G. Blues had been elected as president and principles of hospice care had been addressed.<ref>Ann Goben Blues, ''Hospice and Palliative Nursing Care'' (Grune and Stratton, 1984, ISBN 978-0808915775).</ref>  
  
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In 1984, Dr. Josefina Magno, who had been instrumental in forming the [[American Academy of Hospice and Palliative Medicine]] and sat as first executive director of the US National Hospice Organization, founded the International Hospice Institute, which in 1996 became the International Hospice Institute and College and later the International Association for Hospice and Palliative Care (IAHPC).<ref>David Clark, ''Cicely Saunders: Founder of the Hospice Movement, Selected Letters 1959-1999'' (Oxford University Press, 2002, ISBN 978-0198516071).</ref> Magno had seen "more than 8000 hospice and palliative services established in more than 100 countries."<ref>Laura Newman, [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC200824/ Josefina Bautista Magno] ''British Medical Journal'' 327(7417) (2003): 753. Retrieved September 21, 2020.</ref> The IAHPC follows the philosophy that each country should develop a palliative care model based on its own resources and conditions.<ref>[https://hospicecare.com/about-iahpc/who-we-are/history/ IAHPC History] ''International Association for Hospice & Palliative Care''. Retrieved September 21, 2020.</ref> Standards for Palliative and Hospice Care have been developed in countries including Australia, [[Canada]], [[Hungary]], [[Italy]], [[Japan]], [[Moldova]], [[Norway]], [[Poland]], [[Romania]], [[Spain]], [[Switzerland]], the United Kingdom and the United States.<ref>{{cite web|url=http://www.hospicecare.com/standards/|title=Standards for Palliative Care Provision|publisher=International Association for Hospice & Palliative Care|accessdate=2009-02-21}}</ref>
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In 1984, Dr. Josefina Magno, who had been instrumental in forming the [[American Academy of Hospice and Palliative Medicine]] and sat as first executive director of the US National Hospice Organization, founded the International Hospice Institute. In 1996 it became the International Hospice Institute and College and later the International Association for Hospice and Palliative Care (IAHPC).<ref>David Clark, ''Cicely Saunders: Founder of the Hospice Movement, Selected Letters 1959-1999'' (Oxford University Press, 2002, ISBN 978-0198516071).</ref> Magno had seen "more than 8000 hospice and palliative services established in more than 100 countries."<ref>Laura Newman, [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC200824/ Josefina Bautista Magno] ''British Medical Journal'' 327(7417) (2003): 753. Retrieved September 21, 2020.</ref> The IAHPC follows the philosophy that each country should develop a palliative care model based on its own resources and conditions.<ref>[https://hospicecare.com/about-iahpc/who-we-are/history/ IAHPC History] ''International Association for Hospice & Palliative Care''. Retrieved September 21, 2020.</ref>
  
 
== National variations ==
 
== National variations ==
 
[[Hospice care in the United States]] is largely defined by the practices of the [[Medicare (United States)|Medicare]] system and other [[health insurance]] providers, which cover inpatient or at home hospice care for patients with terminal diseases who are estimated to live six months or less.  
 
[[Hospice care in the United States]] is largely defined by the practices of the [[Medicare (United States)|Medicare]] system and other [[health insurance]] providers, which cover inpatient or at home hospice care for patients with terminal diseases who are estimated to live six months or less.  
  
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Outside the United States, the term tends to be primarily associated with the particular buildings or institutions that specialize in such care. Such institutions may similarly provide care mostly in an end-of-life setting, but they may also be available for patients with other palliative care needs. Hospice care includes assistance for patients' families to help them cope with what is happening and provide care and support to keep the patient at home.<ref>{{cite web|url=https://www.n2information.com/article/ |title=End of Life Care |publisher=N2Information |author=Suzanne Myers |accessdate=2017-11-10}}</ref>
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Outside the United States, the term tends to be primarily associated with the particular buildings or institutions that specialize in such care. Such institutions may similarly provide care mostly in an end-of-life setting, but they may also be available for patients with other palliative care needs. Hospice care includes assistance for patients' families to help them cope with what is happening and provide care and support to keep the patient at home.
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Hospice faced resistance from professional or cultural [[taboo]]s against open communication about death among physicians or the wider population, discomfort with unfamiliar medical techniques and professional callousness towards the terminally ill.<ref name="Kirn">{{cite journal|last=Kirn|first=Marie|date=June 1, 1998|title=Book review|journal=Journal of Palliative Medicine|volume=1|issue=2|pages=201–202|doi=10.1089/jpm.1998.1.201}}</ref> Nevertheless, the movement has spread throughout the world.<ref>{{cite book|title=Ethical Issues in Neurology|last=Bernat|first=James L.|publisher=Lippincott Williams & Wilkins|year=2008|isbn=978-0-7817-9060-4|edition=3, revised|page=154}}</ref>
 
  
 
==== World Hospice and Palliative Care Day ====
 
==== World Hospice and Palliative Care Day ====
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In 2006, the first World Hospice and Palliative Care Day was organised by the Worldwide Palliative Care Alliance, a network of hospice and palliative care national and regional organisations that support the development of hospice and palliative care worldwide. The event takes place on the second Saturday of October every year.<ref>[http://www.worldday.org/about/ About] World Hospice and Palliative Care Day (visited 24. July 2014</ref>
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In 2006, the first World Hospice and Palliative Care Day was organized by the Worldwide Palliative Care Alliance, a network of hospice and palliative care national and regional organization that support the development of hospice and palliative care worldwide. The event takes place on the second Saturday of October every year.<ref>[http://www.thewhpca.org/about World Hospice and Palliative Care Day] Retrieved September 22, 2020.</ref>
  
 
===Africa===
 
===Africa===
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A hospice opened in 1980 in [[Harare]] (Salisbury), [[Zimbabwe]], the first in [[Sub-Saharan Africa]].<ref name=Parry>{{cite book | last = Parry | first = Eldryd High Owen |author2=Richard Godfrey |author3=David Mabey |author4=Geoffrey Gill | edition = 3 revised | title = Principles of Medicine in Africa | publisher = Cambridge University Press | year = 2004 | isbn = 0-521-80616-X | page = 1233}}</ref> In spite of skepticism in the medical community,<ref name=Kirn/> the hospice movement spread, and in 1987 the Hospice Palliative Care Association of South Africa formed.<ref name=Mapping>{{Cite report|title=Mapping levels of palliative care development: a global view |url=http://www.eolc-observatory.net/global/pdf/world_map.pdf |last=Wright |first=Michael |author2=Justin Wood |author3=Tom Lynch |author4=David Clark |date=November 2006 |publisher=Help the Hospices; National Hospice and Palliative Care Organization |accessdate=2010-02-06 |page=14 |url-status=dead |archiveurl=https://web.archive.org/web/20110723115836/http://www.eolc-observatory.net/global/pdf/world_map.pdf |archivedate=2011-07-23 }}</ref> In 1990, Nairobi Hospice opened in [[Nairobi]], [[Kenya]].<ref name=Mapping/> As of 2006, [[Kenya]], [[South Africa]] and [[Uganda]] were among 35 countries offering widespread, well-integrated palliative care.<ref name=Mapping/> Programs adopted the United Kingdom model, but emphasise home-based assistance.<ref>{{cite web|url=http://www.fhssa.org/i4a/pages/index.cfm?pageid=3286 |accessdate=2010-02-06 |title=What do Hospice and Palliative Care Programs in Africa Do? |publisher=Foundation for Hospices in Sub-Saharan Africa |url-status=dead |archiveurl=https://web.archive.org/web/20091120033010/http://www.fhssa.org/i4a/pages/index.cfm?pageid=3286 |archivedate=2009-11-20 }}</ref>
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The first hospice in [[Sub-Saharan Africa]] opened in 1980 in [[Harare]] (Salisbury), [[Zimbabwe]].<ref> Eldryd Parry, Richard Godfrey, David Mabey, and Geoffrey Gill (eds.), ''Principles of Medicine in Africa'' (Cambridge University Press, 2004, ISBN 978-0521806169). </ref> In spite of skepticism in the African medical community, the hospice movement spread, and in 1987 the Hospice Palliative Care Association of South Africa formed.<ref> [https://hpca.co.za/about-us/ About HPCA] ''Hospice Palliative Care Association of South Africa''. Retrieved September 22, 2020.</ref> Nairobi Hospice was established in 1988 in [[Nairobi]], [[Kenya]].<ref>[https://nairobihospice.or.ke/ Nairobi Hospice] Retrieved September 22, 2020.</ref>  
  
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Following the foundation of hospice in Kenya in the early 1990s, palliative care spread throughout the country. Representatives of Nairobi Hospice sit on the committee to develop a Health Sector Strategic Plan for the [[Ministry of Health (Kenya)|Ministry of Health]] and work with the Ministry of Health to help develop palliative care guidelines for cervical cancer.<ref name=Mapping/> The [[Politics of Kenya|Government of Kenya]] supported hospice by donating land to Nairobi Hospice and providing funding to several of its nurses.<ref name=Mapping/>
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[[Hospice Africa Uganda]] (HAU) founded by [[Anne Merriman]], began offering services in 1993 in a two-bedroom house loaned for the purpose by [[Nsambya Hospital]], [[Kampala]], [[Uganda]], supported by [[Hospice Africa] charity established in [[Liverpool]] [[UK]], Merriman's birthplace. Investing in education programs with the ethos that the patient and family are at the center of the program, an affordable and culturally appropriate model for Africa was developed. A home based care model of palliative care is supplemented with hospital consultations where patients are allowed home based on their health needs and their own wishes. HAU centers also treat outpatients. These complementary services allow patients flexibility and options when facing the end of life. Today, HAU is recognized in Uganda as a center of excellence and a model in community based care.<ref>[http://uganda.hospiceafrica.or.ug/index.php/about-us/history-2 History of Hospice Africa] ''Hospice Africa Uganda''. Retrieved September 22, 2020.</ref>
  
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In South Africa, hospice services are widespread, focusing on diverse communities (including orphans and homeless) and offered in diverse settings (including in-patient, day care and home care).<ref name=Mapping/> Over half of hospice patients in South Africa in the 2003–2004 year were diagnosed with [[AIDS]], with the majority of the remaining diagnosed with [[cancer]].<ref name=Mapping/> Palliative care is supported by the Hospice Palliative Care Association of South Africa and by national programmes partly funded by the [[President's Emergency Plan for AIDS Relief]].<ref name=Mapping/>
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Today, Hospice Africa continues its vision of palliative care for all those in need, providing both care to patients and training for providers in over 30 countries across Africa.<ref>[https://hospice-africa.com/where-we-started/ Hospice Africa]. Retrieved September 22, 2020.</ref>
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[[Hospice Africa Uganda]] (HAU) founded by [[Anne Merriman]], began offering services in 1993 in a two-bedroom house loaned for the purpose by [[Nsambya Hospital]].<ref name=Mapping/> HAU has since expanded to a base of operations at [[Makindye]], [[Kampala]], with hospice services offered at roadside clinics by Mobile Hospice [[Mbarara]] since January 1998. That same year the Little Hospice Hoima opened in June. Hospice care in Uganda is supported by community volunteers and professionals, as [[Makerere University]] offers a distance diploma in palliative care.<ref name=M15>Wright et al, 15.</ref> The government of Uganda published a strategic plan for palliative care that permits nurses and clinical officers from HAU to prescribe [[morphine]].
 
  
 
===North America===
 
===North America===
  
 
====Canada====
 
====Canada====
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The Canadian hospice movement focuses primarily on palliative care in a hospital setting.<ref name=Forman>{{cite book | last = Forman | first = Walter B. | author2 = Denice Kopchak Sheehan | author3 = Judith A. Kitzes | title = Hospice and Palliative Care: Concepts and Practice | edition = 2 | publisher = Jones & Bartlett Publishers | year = 2003 | isbn = 0-7637-1566-2 | page = [https://archive.org/details/hospicepalliativ0000unse_h4k9/page/6 6] | url = https://archive.org/details/hospicepalliativ0000unse_h4k9/page/6 }}</ref><ref name=Feldberg>{{cite book | last = Feldberg | first = Georgina D. |author2=Molly Ladd-Taylor |author3=Alison Li | title = Women, Health and Nation: Canada and the United States Since 1945 | publisher = McGill-Queen's Press - MQUP | year = 2003 | isbn = 0-7735-2501-7 | page = 342}}</ref> Having read Kubler-Ross, Mount studied the experiences of the terminally ill at [[Royal Victoria Hospital, Montreal]]; the "abysmal inadequacy", as he termed it, that he found prompted him to spend a week with Saunders at St. Christopher's.<ref name=OttawaCitizen>{{cite web|url=http://www.canada.com/ottawacitizen/story.html?id=896d005a-fedd-4f50-a2d9-83a95fc56464 |title=A Moral Force: The Story of Dr. Balfour Mount |author=Andrew Duffy |work=[[Ottawa Citizen]] |accessdate=January 1, 2007 |url-status=dead |archiveurl=https://web.archive.org/web/20061215112019/http://www.canada.com/ottawacitizen/story.html?id=896d005a-fedd-4f50-a2d9-83a95fc56464 |archivedate=December 15, 2006 }}</ref> Inspired, Mount decided to adapt Saunders' model for Canada. Given differences in medical funding, he determined that a hospital-based approach would be more affordable, creating a specialized ward at Royal Victoria in January, 1975.<ref name=Feldberg/><ref name=OttawaCitizen/> Canada's official languages include English and French, leadig Mount to propose the term "palliative care ward", as the word ''hospice'' was already used in France to refer to [[nursing home]]s.<ref name=Feldberg/><ref name=OttawaCitizen/> Hundreds of palliative care programs followed throughout Canada through the 1970s and 1980s.<ref>Feldberg et al., 343.</ref>
+
The Canadian hospice movement focuses primarily on palliative care in a [[hospital]] setting.<ref>Denice Kopchak Sheehan, Walter B. Forman, Judith A. Kitzes, and Robert P. Anderson, ''Hospice and Palliative Care: Concepts and Practice'' (Jones & Bartlett Learning, 2003, ISBN 978-0763715663). </ref><ref name=Feldberg>Georgina Feldberg, Molly Ladd-Taylor, and Alison Li, ''Women, Health and Nation: Canada and the United States Since 1945'' (McGill-Queen's University Press, 2003, ISBN 978-0773525016).</ref> Having read [[Elisabeth Kübler-Ross|Kubler-Ross]]'s writings, Balfour Mount studied the experiences of the terminally ill at [[Royal Victoria Hospital, Montreal]]. The "abysmal inadequacy," as he termed it, that he found there prompted him to spend a week with [[Cicely Saunders]] at St. Christopher's. Inspired, Mount decided to adapt Saunders' model for Canada. Given differences in medical funding, he determined that a hospital-based approach would be more affordable, creating a specialized ward at Royal Victoria in January, 1975.<ref name=Feldberg/> Canada's official languages include English and French, leading Mount to propose the term "palliative care ward," as the word ''hospice'' was already used in France to refer to [[nursing home]]s. Hundreds of palliative care programs followed throughout Canada through the 1970s and 1980s.<ref name=Feldberg/>
  
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However, as of 2004, according to the Canadian Hospice Palliative Care Association (CHPCA), hospice palliative care was only available to 5-15% of Canadians, with government funding declining.<ref name=CHPCA>{{cite web | url = http://www.chpca.net/public_policy_advocacy/january_2006_policy_alerts/Factsheet-HospicePalliativeCareinCanada-December+2+2004.pdf | title = Fact Sheet: Hospice Palliative Care in Canada  | date = December 2004 | publisher = Canadian Hospice Palliative Care Association | accessdate = 2009-02-21}}</ref> At that time, Canadians were increasingly expressing a desire to die at home, but only two of Canada's ten provinces were provided medication cost coverage for home care.<ref name=CHPCA/> Only four of ten identified palliative care as a core health service.<ref name=CHPCA/> At that time, palliative care was not widely taught at nursing schools or universally certified at medical colleges; only 175 specialized palliative care physicians served all of Canada.<ref name=CHPCA/>
+
In 1991, the Canadian Hospice Palliative Care Association (CHPCA) was formally established as a national charitable organization with the mission to provide leadership in hospice palliative care in Canada. The organization works to advance and advocate for quality end-of-life/hospice palliative care throughout Canada. CHPCA works in close partnership with other national organizations with the goal of ensuring that all Canadians have access to quality hospice palliative care.<ref>[https://www.chpca.ca/ Canadian Hospice Palliative Care Association] Retrieved September 23, 2020.</ref>
  
 
====United States====
 
====United States====
 +
Hospice care in the United States has grown from a volunteer-led movement to improve care for people dying alone, isolated, or in hospitals, to a significant part of the [[health care]] system. The first US-based palliative medicine and hospice service program was started in 1987 by Declan Walsh at the [[Cleveland Clinic]] Cancer Center in Cleveland, Ohio. The program evolved into The Harry R. Horvitz Center for Palliative Medicine, which was designated as a [[World Health Organization]] international demonstration project and accredited by the European Society of Medical Oncology as an Integrated Center of Oncology and Palliative Care. Other programs followed: most notably the Palliative Care Program at the Medical College of Wisconsin (1993); Pain and Palliative Care Service, Memorial Sloan-Kettering Cancer Center (1996); and The Lilian and Benjamin Hertzberg Palliative Care Institute, Mount Sinai School of Medicine (1997).<ref>Daniel M. Fox and Rosemary Gibson, [https://www.milbank.org/publications/pioneer-programs-in-palliative-care-nine-case-studies/ Pioneer Programs in Palliative Care: Nine Case Studies] ''Milbank Report'', October 2000. Retrieved September 24, 2020.</ref>
  
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[[Hospice care in the United States]] is largely defined by the practices of the [[Medicare (United States)|Medicare]] system and other [[health insurance]] providers, which cover inpatient or at home hospice care for patients with terminal diseases who are estimated to live six months or less. Hospice care under the Medicare Hospice Benefit requires documentation from two physicians estimating a person has less than six months to live if the disease follows its usual course. Hospice benefits includes access to a multidisciplinary treatment team specialized in end of life care and can be accessed in the home, long term care facility or the hospital.<ref name=Understanding/>
+
Today, hospice benefits include access to a multidisciplinary treatment team specialized in end of life care. These benefits are largely defined by the practices of the [[Medicare (United States)|Medicare]] system and other [[health insurance]] providers, which cover inpatient or at home hospice care for patients with terminal diseases who are estimated to live six months or less. Hospice care under the Medicare Hospice Benefit requires documentation from two physicians estimating a person has less than six months to live if the disease follows its usual course.<ref name=Understanding/> Hospice is the only Medicare benefit that includes pharmaceuticals, medical equipment, twenty-four-hour/seven-day-a-week access to care, and support for loved ones following a death. Hospice care is covered by [[Medicaid]] and most private insurance plans.  
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Hospice in the United States has grown from a volunteer-led movement to improve care for people dying alone, isolated, or in hospitals, to a significant part of the health care system. In 2010, an estimated 1.581 million patients received hospice services. Hospice is the only [[Medicare (United States)|Medicare]] benefit that includes pharmaceuticals, medical equipment, twenty-four-hour/seven-day-a-week access to care, and support for loved ones following a death. Hospice care is covered by [[Medicaid]] and most private insurance plans. Most hospice care is delivered at home. Hospice care is available to people in home-like hospice residences, nursing homes, assisted living facilities, veterans' facilities, hospitals and prisons.
 
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The first hospital-based palliative care consultation service developed in the US was the [[Wayne State University School of Medicine]] in 1985 at [[Detroit Receiving Hospital]].<ref>{{cite journal |last= Carlson |first= Richard |last2= Devich |first2= Lynn |last3= Frank |first3= Robert |date= 1988 |title= Development of a Comprehensive Supportive Care Team for the Hopelessly Ill on a University Hospital Medical Service |journal= JAMA |volume= 259 |issue= 3 |pages= 378–383 |doi= 10.1001/jama.1988.03720030038030 }}</ref> The first US-based palliative medicine and hospice service program was started in 1987 by Declan Walsh, MD at the [[Cleveland Clinic]] Cancer Center in Cleveland, Ohio.<ref>{{cite journal |last= Walsh |first= Declan |date= 2000 |title= The Harry R. Horvitz Center for Palliative Medicine, The Cleveland Clinic Foundation, Pioneer Programs in Palliative Care: Nine Case Studies |url= http://www.milbank.org/publications/milbank-reports/101-reports-pioneer-programs-in-palliative-care-nine-case-studies |journal= The Milbank Memorial Fund |publisher= Co-published with the Robert Wood Johnson Foundation |orig-year=2000}}</ref> The program evolved into The Harry R. Horvitz Center for Palliative Medicine, which was designated as a [[World Health Organization]] international demonstration project and accredited by the European Society of Medical Oncology as an Integrated Center of Oncology and Palliative Care. Other programs followed: most notable the Palliative Care Program at the Medical College of Wisconsin (1993); Pain and Palliative Care Service, Memorial Sloan-Kettering Cancer Center (1996); and The Lilian and Benjamin Hertzberg Palliative Care Institute, Mount Sinai School of Medicine (1997).  
 
  
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In 1982, Congress initiated the creation of the Medicare Hospice Benefit, which became permanent in 1986. In 1993, President [[Bill Clinton|Clinton]] installed hospice as a guaranteed benefit and an accepted component of health care provisions.<ref>{{cite web|url=http://www.rnceus.com/course_frame.asp?exam_id=98&directory=hospice|title=Interactive Online Continuing Education for Nurse Professionals|publisher=www.rnceus.com|access-date=2018-11-28}}</ref>
+
The Centers for Medicare and Medicaid Services has defined four kinds, or “levels,” of hospice care: hospice care at home, where services that support the patient and their family are provided at home; "continuous care," which is round-the-clock hospice care at home; inpatient hospice care, where the patient's symptoms cannot be managed at home; and respite care which offers a brief stay at an inpatient hospice facility to give primary caregivers a break.<ref>[https://www.vitas.com/hospice-and-palliative-care-basics/about-hospice-care/the-4-levels-of-hospice-care/ The 4 Levels of Hospice Care] ''VITAS Healthcare''. Retrieved September 23, 2020.</ref>
  
 
===United Kingdom===
 
===United Kingdom===
 
[[File:Trinity Hospice shop, King Street, Hammersmith.jpg|thumb|225px|Trinity Hospice shop, King Street, Hammersmith, [[London]]]]
 
[[File:Trinity Hospice shop, King Street, Hammersmith.jpg|thumb|225px|Trinity Hospice shop, King Street, Hammersmith, [[London]]]]
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The first hospice to open in the United Kingdom was the [[Royal Trinity Hospice]] in [[Clapham]] south London in 1891, on the initiative of the [[Hoare baronets|Hoare banking family]].<ref>{{Cite web|url=https://www.cqc.org.uk/location/1-144273944|title=Royal Trinity Hospice|website=www.cqc.org.uk|access-date=2019-12-23}}</ref> More than half a century later, a hospice movement developed after Dame [[Cicely Saunders]] opened [[St Christopher's Hospice]] in 1967, widely considered the first modern hospice.  
+
The first hospice to open in the United Kingdom was the [[Royal Trinity Hospice]] in [[Clapham]] south London in 1891, on the initiative of the [[Hoare baronets|Hoare banking family]].<ref>[https://www.royaltrinityhospice.london/our-history Our history] ''Royal Trinity Hospice''. Retrieved September 24, 2020.</ref> More than half a century later, a hospice movement developed after Dame [[Cicely Saunders]] opened [[St Christopher's Hospice]] in 1967, widely considered the first modern hospice.  
 +
 
 +
Hospice funding varies from 100 percent by the [[National Health Service]] to almost 100 percent by charities, but the service is always free to patients. The UK's palliative care has been ranked as the best in the world "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."<ref>David Line, [https://eiuperspectives.economist.com/healthcare/2015-quality-death-index Quality of Death Index 2015: Ranking palliative care across the world] ''The Economist Intelligence Unit'', October 6, 2015. Retrieved September 24, 2020. </ref>
  
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Hospice funding varies from 100 percent by the [[National Health Service]] to almost 100 percent by charities, but the service is always free to patients. The UK's palliative care has been ranked as the best in the world "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."<ref>{{cite news|title=Quality of Death Index 2015: Ranking palliative care across the world |url=http://www.economistinsights.com/healthcare/analysis/quality-death-index-2015 |accessdate=8 October 2015 |work=The Economist Intelligence Unit |date=6 October 2015 |postscript=none |url-status=dead |archiveurl=https://web.archive.org/web/20151009031039/http://www.economistinsights.com/healthcare/analysis/quality-death-index-2015 |archivedate=9 October 2015 }}; {{cite news|title=UK end-of-life care 'best in world' |url=https://www.bbc.co.uk/news/health-34415362 |accessdate=8 October 2015 |work=BBC |date=6 October 2015 }}</ref>
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=== Other nations ===
 +
Hospice and palliative care are well-established in Australia, New Zealand, and much of Asia and Western Europe.
 +
 +
The first hospice in [[New Zealand]], Mary Potter Hospice, opened on June 1979 in Wellington. Later that year, Te Omanga Hospice in Lower Hutt, and Saint Joseph's Mercy Hospice in Auckland, were also opened. From these small beginnings the hospice movement in New Zealand grew into 42 hospices by the beginning of the twenty-first century.<ref>Michael McCabe, [http://www.nathaniel.org.nz/bioethics-politics-and-slovenly-language-lessons-from-history/16-bioethical-issues/bioethics-at-the-end-of-life/114-the-hospice-movement-in-new-zealand-25-years-on The Hospice Movement in New Zealand - 25 Years On] ''The Nathaniel Centre'', August 2004. Retrieved September 24, 2020.</ref>  
  
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Hospices also provide volunteering opportunities for over 100,000 people in the UK, whose economic value to the hospice movement has been estimated at over £112 million.<ref>{{cite web |url=http://www.helpthehospices.org.uk/about-hospice-care/facts-figures/ |title=Help The Hospices |access-date=2009-02-19 |archive-url=https://web.archive.org/web/20120220121846/http://www.helpthehospices.org.uk/about-hospice-care/facts-figures/ |archive-date=2012-02-20 |url-status=dead }}</ref>
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Developing out of the Australian Association for Hospice and Palliative Care Inc., which started in 1991, Palliative Care Australia launched in 1998 with the mission to  influence, foster and promote the delivery of quality palliative care for all who need it, when and where they need it.<ref>[https://palliativecare.org.au/about-pca About PCA] ''Palliative Care Australia''. Retrieved September 24, 2020.</ref>
  
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=== Other nations ===
+
[[Japan]] opened its first hospice in 1981, officially hosting over 200 by 2010. The Japan Hospice/Palliative Care Foundation was established on December 28, 2000, with the following mission:
 +
* conducting investigation and research for the purpose of improving the quality of hospice/palliative care.
 +
* providing technical support to the staff involved, including doctors, nurses, pharmacists, co-medical staff and social workers.
 +
* sponsoring PR activities and international exchange related to hospice/palliative care.<ref>[https://www.hospat.org/english/objectives.html Objectives of JHPF] ''Japan Hospice Palliative Care Foundation''. Retrieved September 24, 2020.</ref>
  
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Hospice Care in [[Australia]] began when the Irish Sisters of Charity opened hospices in Sydney (1889) and in Melbourne (1938). The first hospice in [[New Zealand]] opened in 1979.<ref>[https://online.mcd.edu.au/course/view.php?id=277 Palliative Care in Australia and New Zealand p.1257 Margaret O'Connor & Peter L Hudson 2008]{{dead link|date=November 2017 |bot=InternetArchiveBot |fix-attempted=yes }}</ref> Hospice care entered [[Poland]] in the mid-1970s.<ref name="Polish">{{cite journal |editor1-first= Beata |editor1-last= Roguska |date=October 2009 |title=Hospice and Palliative Care |journal= Polish Public Opinion |page=1 |publisher= [[Centre for Public Opinion Research (Poland)|CBOS]] |issn=1233-7250 }}</ref> [[Japan]] opened its first hospice in 1981, officially hosting 160 by July 2006.<ref>{{cite web | url = http://www.hospat.org/english/objectives.html | title = Objectives | publisher = Japan Hospice Palliative Care Foundation | accessdate = 2009-02-21}}</ref> [[India]]'s first hospice, Shanti Avedna Ashram, opened in [[Bombay]] in 1986.<ref>{{cite journal | url = http://findarticles.com/p/articles/mi_qa4036/is_200308/ai_n9246448/ | archive-url = https://web.archive.org/web/20080119011430/http://findarticles.com/p/articles/mi_qa4036/is_200308/ai_n9246448 | url-status = dead | archive-date = 2008-01-19 | title = Model of holistic care in hospice set up in India | last = Kapoor | first = Bimla |date=October 2003 | journal = Nursing Journal of India | volume = 94 | issue = 8 | pages = 170–2 | accessdate = 2010-02-06| pmid = 15310098 }}</ref><ref>{{cite book|title=Clinical Pain Management|url=https://books.google.com/books?id=2pMYQtN4t3AC&pg=PA87|accessdate=30 June 2013|year=2008|publisher=CRC Press|isbn=978-0-340-94007-5|page=87|quote=In 1986, Professor D'Souza opened the first Indian hospice, Shanti Avedna Ashram, in Mumbai, Maharashtra, central India.}}</ref><ref name="(Singapore)1994">{{cite book|last=(Singapore)|first=Academy of Medicine|title=Annals of the Academy of Medicine, Singapore|url=https://books.google.com/books?id=eO9NAQAAIAAJ|accessdate=30 June 2013|year=1994|publisher=Academy of Medicine.|page=257|quote=}}</ref><ref>{{cite news | url = http://articles.timesofindia.indiatimes.com/2011-03-08/mumbai/28667751_1_first-hospice-patients-biggest-endorsement | title = At India's first hospice, every life is important | first = Malathy | last = Iyer | date = Mar 8, 2011 | accessdate = 2013-06-30|quote=The pin drop silence gives no indication that there are 60 patients admitted at the moment in Shanti Avedna Sadan-the country's first hospice that is located on the quiet incline leading to the Mount Mary Church in Bandra. | work=The Times Of India}}</ref> The first hospice in the Nordics opened in Tampere, Finland in 1988.<ref>{{cite web|url=https://www.pirkanmaanhoitokoti.fi/in-english/|title=Welcome to Pirkanmaa Hospice - Pirkanmaan Hoitokoti|website=www.pirkanmaanhoitokoti.fi|access-date=2018-11-28}}</ref> The first modern free-standing hospice in [[China]] opened in [[Shanghai]] in 1988.<ref>{{cite book | last = Pang | first = Samantha Mei-che | title =  Nursing Ethics in Modern China: Conflicting Values and Competing Role | publisher = Rodopi | year = 2003 | isbn = 90-420-0944-6 | page = 80}}</ref> The first hospice unit in Taiwan, where the term for hospice translates as "peaceful care", opened in 1990.<ref name="Kirn" /><ref>{{cite journal|last=Lai|first=Yuen-Liang|author2=Wen Hao Su|date=September 1997|title=Palliative medicine and the hospice movement in Taiwan|journal=Supportive Care in Cancer|volume=5|issue=5|pages=348–350|doi=10.1007/s005200050090|pmid=9322344|issn=0941-4355}}<!--| accessdate = 2009-02-21—></ref> The first free-standing hospice in [[Hong Kong]], where the term for hospice translates as "well-ending service", opened in 1992.<ref name="Kirn" /><ref>{{cite web | url = http://www.ha.org.hk/haho/ho/hesd/100170e.htm | title = Bradbury Hospice | publisher = Hospital Authority, Hong Kong | accessdate = 2009-02-21 | quote = Established by the Society for the Promotion of Hospice Care in 1992, Bradbury Hospice was the first institution in Hong Kong to provide specialist hospice care.}}</ref> The first hospice in [[Russia]] was established in 1997.<ref>{{cite web|url=http://www.russiatoday.com/Top_News/2007-09-21/Russias_first_hospice_turns_ten_.html |archive-url=https://archive.today/20120908195128/http://www.russiatoday.com/Top_News/2007-09-21/Russias_first_hospice_turns_ten_.html |url-status=dead |archive-date=September 8, 2012 |title=Russia's first hospice turns ten |date=September 21, 2007 |publisher=Russia Today |accessdate=2009-02-21 }}</ref>
+
[[India]]'s first hospice, Shanti Avedna Ashram, opened in [[Bombay]] in 1986.<ref> Nigel Sykes, Michael Bennet, and Chun-su Yuan, ''Clinical Pain Management'' (CRC Press, 2008, ISBN 978-0340940075).</ref>
  
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== Hospice home health ==
+
The first modern free-standing hospice in [[China]] opened in [[Shanghai]] in 1988.<ref>Samantha Mei-che Pang, ''Nursing Ethics in Modern China: Conflicting Values and Competing Role Requirements'' (Brill Rodopi, 2003, ISBN 978-9042009448).</ref> The first hospice unit in Taiwan, where the term for hospice translates as "peaceful care", opened in 1990.<ref>Yuen-Liang Lai and Wen Hao Su, [https://pubmed.ncbi.nlm.nih.gov/9322344/ Palliative medicine and the hospice movement in Taiwan] ''Supportive Care in Cancer'' 5(5) (September 1997): 348–350. Retrieved September 23, 2020.</ref>  
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Nurses that work in hospice in the home healthcare setting aim to relieve pain and holistically support their patients and patient’s families. Patients can receive hospice care when they have less than 6 months to live or would like to shift the focus of care from curative to comfort care. The goal of hospice care is to meet the needs of both the patient and family, knowing that a home death is not always to best outcome. Medicare covers all costs of hospice treatment <ref name=":3">{{Cite book|url=https://www.worldcat.org/oclc/1019995724|title=Community/public health nursing : promoting the health of populations|others=Nies, Mary A. (Mary Albrecht),, McEwen, Melanie,|isbn=978-0-323-52894-8|edition=Edition 7|location=St. Louis, Missouri|oclc=1019995724}}</ref>(Nies & McEwen, 2019).
 
  
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The hospice home health nurse must be skilled in both physical care and psychosocial care. Most nurses will work with a team that includes a physician, social worker and possibly a spiritual care counselor. Some of the nurse’s duties will include reassuring family members, and ensuring adequate pain control. The nurse will need to explain to the patient and family that a pain free death is possible, and scheduled opioid pain medications are appropriate in this case. The nurse will need to work closely with the medical provider to ensure that dosing is appropriate, and in the case of tolerance, the dose is raised. The nurse should be aware of cultural differences and needs and should aim to meet them. The nurse will also support the family after death and connect the family to bereavement services <ref name=":3" />(Nies & McEwen, 2019).
+
The first hospice in the Nordics opened in Tampere, [[Finland]] in 1988. Their treatment emphasizes dealing with the patient in a holistic manner, especially valuing the dignity and individuality of each patient. In addition to the inpatient facility, patients may receive hospice home care while staying at home.<ref>[https://www.pirkanmaanhoitokoti.fi/in-english/ Welcome to Pirkanmaa Hospice] ''Pirkanmaan Hoitokoti''. Retrieved September 24, 2020. </ref>
  
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==Children's Hospice==
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== Hospice care at home ==
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[[File:Demelza House Children's Hospice - geograph.org.uk - 11846.jpg|thumb|250px|[[Demelza Hospice Care for Children]] in [[Kent]], [[England]].]]
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[[Nurse]]s working in hospice home settings aim to relieve pain and holistically support their patients and patients families.<ref name=Nies> Mary A. Nies and Melanie McEwen, ''Community/Public Health Nursing: Promoting the Health of Populations'' (Saunders, 2018, ISBN 978-0323528948). </ref>
  
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A '''children's hospice''' is a [[hospice]] specifically designed to help children and young people who are not expected to reach [[adulthood]] with the emotional and physical challenges they face, and also to provide respite care for their families.
+
The hospice home health nurse must be skilled in both physical care and psychosocial care, and be aware of cultural differences and needs and should aim to meet them. Most nurses will work with a team that includes a [[physician]], [[social worker]], and possibly a spiritual care counselor. Some of the nurse’s duties will include reassuring family members, and ensuring adequate pain control. The goal of hospice care is to meet the needs of both the patient and family, knowing that a home death is not always the best outcome. A pain free death is possible, and scheduled opioid pain medications are appropriate in this case. The hospice nurse also supports the family after death and may connect the family to bereavement services.<ref name=Nies/>
  
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Services
+
==Children's Hospice==
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A typical children's hospice service offers:{{citation needed|date=May 2020}}
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[[File:Demelza House Children's Hospice - geograph.org.uk - 11846.jpg|thumb|275px|[[Demelza Hospice Care for Children]] in [[Kent]], [[England]].]]
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*Specialist children's palliative care, respite care, emergency, and terminal care (this may be at the hospice or within the child's home)
 
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*[[Grief|Bereavement]] counselling and support, typically offered as individual home support, as well as groups and work with brothers or sisters
 
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*Information, advice and practical assistance
 
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*24-hour telephone support
 
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*A system of contact or key workers who work with named children and families to ensure support is consistent and continued between visits
 
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*[[Physiotherapy]] and many complementary therapies
 
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*[[Music therapy|Music]] and play therapy
 
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*Activities for siblings.
 
  
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Children's hospice services work with families from all faiths, cultures and ethnic backgrounds and respect the importance of religious customs and cultural needs that are essential to the daily lives of each family. Many have a chaplain who is familiar with a variety of faiths and customs. Each service is typically an independent charity which relies on public support to continue their work.{{citation needed|date=August 2017}}
+
A '''children's hospice''' or '''pediatric hospice''' is a hospice specifically designed to improve the quality of life of children and young people who are not expected to reach [[adulthood]], helping with the emotional and physical challenges they face, and also providing respite care for their families.
  
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Children's hospice services are dedicated to improving the quality of life of children and young people who are not expected to live to reach adulthood and their families.<ref name="childhospice.org.uk">{{cite web|url=http://www.childhospice.org.uk|title=Children's Charities - Children Hospices - Together for Short Lives|website=www.childhospice.org.uk}}</ref>
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Pediatric hospice care is family-centric rather than patient-centric, with the parents of the sick child taking the lead in determining the plan of care in collaboration with their physician. The aim is to enable the family to provide the support the child deserves, without undermining care and support for the rest of the family.<ref>[https://www.vitas.com/care-services/personalized-care-plans-by-diagnosis/pediatric/ Pediatric Hospice Care] ''VITAS Healthcare''. Retrieved September 24, 2020.</ref>
  
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They provide flexible, practical and free support at home and in the hospice to the entire family, often over many years and at any stage of the child's or young person's illness. This includes short breaks and daytime activities enabling families to get a rest; help with the control of pain or other distressing symptoms; and support for family members, including brothers and sisters. When the end of a child's life approaches, children's hospice services are there to provide end-of-life care and bereavement support for as long as it's needed, helping families and friends approach death with dignity and peace.{{citation needed|date=May 2020}}
+
A typical children's hospice service offers:
 +
*Specialist children's palliative care, respite care, emergency, and terminal care (this may be at the hospice or within the child's home)
 +
*Support from social workers and therapists trained in pediatric hospice care
 +
*Availability of chaplains to offer spiritual and emotional support for the child and the family
 +
*Trained volunteers who can spend time with the child or siblings, to give the parents some time alone
 +
*[[Grief|Bereavement]] counseling and support, typically offered as individual home support, as well as groups and work with brothers or sisters
  
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===United Kingdom children's hospices===
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[[Helen House]] in [[Oxfordshire]], [[England]] was the world's first children's hospice, opening in November, 1982. Helen House sprang from a friendship between [[Sister Frances Dominica Ritchie|Sister Frances Dominica]] and the parents of a seriously ill little girl called Helen, who lived at home with her family but required 24-hour care. Helen House has inspired the establishment of almost 50 other children's hospices across the UK and around the world.<ref>[https://www.helenanddouglas.org.uk/about-us/our-history/ Our History] ''Helen & Douglas House''. Retrieved September 25, 2020.</ref>
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[[Helen & Douglas House|Helen House]] in [[Oxfordshire]] was the world's first children's hospice.<ref>{{cite web|url=http://www.helenanddouglas.org.uk/|title=Helen & Douglas House - the World's first children's hospice providing hospice care for children and young adults|website=www.helenanddouglas.org.uk|accessdate=19 March 2014}}</ref>  It opened in November 1982. Helen House sprang from a friendship between [[Sister Frances Dominica Ritchie|Sister Frances Dominica]] and the parents of a seriously ill little girl called Helen, who lived at home with her family but required 24-hour care.<ref name="Helen">{{cite web | url= http://www.helenanddouglas.org.uk/extra16.html | title= History | work= Helen &amp; Douglas House | accessdate= 2007-07-08 | archive-url= https://web.archive.org/web/20070516234959/http://www.helenanddouglas.org.uk/extra16.html | archive-date= 2007-05-16 | url-status= dead }}</ref>
 
  
−
The first children's hospice in [[Scotland]] Rachel House, run by [[Children's Hospice Association Scotland]] opened in March 1996.<ref>{{cite web|url=http://www.dailyrecord.co.uk/lifestyle/inspirational-scottish-chas-hospice-rachel-7598872|last1=McIver|first1=Brian|title=Inspirational Scottish CHAS hospice Rachel House celebrates its 20th birthday.|website=www.dailyrecord.co.uk|access-date=August 20, 2017|date=2016-03-21}}</ref>
+
The first children's hospice in [[Scotland]], Rachel House, run by [[Children's Hospice Association Scotland]] opened in March 1996. Following its success, Robin House was opened in Balloch, Dunbartonshire, in 2005.<ref>Brian McIver, [https://www.dailyrecord.co.uk/lifestyle/inspirational-scottish-chas-hospice-rachel-7598872 Inspirational Scottish CHAS hospice Rachel House celebrates its 20th birthday] ''Daily Record'', March 21, 2016.</ref>
  
−
There are now over 40 operational children's hospice services open across the UK.<ref name="Helen" /> Children's hospice services in England receive an average of 5% government funding and rely heavily on public donations.
+
The children's hospice movement is still in a relatively early stage in the [[United States]], where many of the functions of a children's hospice are provided by children's hospitals. When physicians find that a child can no longer be medically cured, along with the parents a decision is made to end care, keeping in mind the best interests of the child. The place of death (home, hospice, hospital) should be a matter of individual choice.<ref>Michele Puckey and Andrew Bush, [https://pubmed.ncbi.nlm.nih.gov/21458743/ "Passage to Paradise" Ethics and end-of-life decisions in children] ''Paediatric Respiratory Reviews'' 12(2) (2011)139–143. Retrieved September 25, 2020.</ref>  
  
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===United States children's hospices===
+
Most parents of children who have serious development disorders actively share the end of life decision making process. Parents recognize the importance of advocating for the best interest of their child. Visible suffering, remaining quality of life, and the child's will to survive are important factors for parents in making end of life decisions.<ref>I.H. Zaal-Schuller, M.A. de Vos, P.M. Ewals, J.B. van Goudoever, and D.L. Willems, [https://pubmed.ncbi.nlm.nih.gov/26741261/ End-of-life decision-making for children with severe developmental disabilities: The parental perspective] ''Research in Developmental Disabilities'' 49-50 (2016):235–246. Retrieved September 25, 2020.</ref>
−
The children's hospice movement is still in a relatively early stage in the [[United States]], where many of the functions of a children's hospice are provided by children's hospitals. In 1983, of the 1,400 hospices in the United States, only four were able to accept children. When physician's have to decide that a child can no longer be medically cured, along with the parents a decision is made to end care, keeping in mind the best interest of the child. When a decision between the parents and physicians cannot be reach, which is a very small percentage. The Physicians are then not obligated to provide any therapy care that the doctors have not deemed necessary towards the care goals of the child.<ref>{{Cite journal|url=|doi=10.1016/j.prrv.2010.10.003|pmid=21458743|title="Passage to Paradise" Ethics and end-of-life decisions in children|journal=Paediatric Respiratory Reviews|volume=12|issue=2|pages=139–143|year=2011|last1=Puckey|first1=Michele|last2=Bush|first2=Andrew}}</ref> Most parents of the children that have serious development disorders actively share the end of life decision making process. The main factors that parents take in consideration when making end of life care decisions is the importance to advocate for the best interest of their child. Also, the visible suffering, remaining quality of life and the child's will to survive is an influence.<ref>{{Cite journal|doi=10.1016/j.ridd.2015.12.006|pmid=26741261|title=End-of-life decision-making for children with severe developmental disabilities: The parental perspective|journal=Research in Developmental Disabilities|volume=49-50|pages=235–246|year=2016|last1=Zaal-Schuller|first1=I.H.|last2=De Vos|first2=M.A.|last3=Ewals|first3=F.V.P.M.|last4=Van Goudoever|first4=J.B.|last5=Willems|first5=D.L.}}</ref>
 
  
 
==Notes==
 
==Notes==
Line 135: Line 133:
 
* Clark, David. ''Cicely Saunders: Founder of the Hospice Movement, Selected Letters 1959-1999''. Oxford University Press, 2002. ISBN 978-0198516071
 
* Clark, David. ''Cicely Saunders: Founder of the Hospice Movement, Selected Letters 1959-1999''. Oxford University Press, 2002. ISBN 978-0198516071
 
* Connor, Stephen R. ''Hospice: Practice, Pitfalls, and Promise''. Routledge, 1997. ISBN 978-1560325123
 
* Connor, Stephen R. ''Hospice: Practice, Pitfalls, and Promise''. Routledge, 1997. ISBN 978-1560325123
 +
* Feldberg, Georgina, Molly Ladd-Taylor, and Alison Li. ''Women, Health and Nation: Canada and the United States Since 1945''. McGill-Queen's University Press, 2003. ISBN 978-0773525016
 
* Kilpatrick, Anne Osborne, and James A. Johnson (eds.). ''Handbook of Health Administration and Policy''. CRC Press, 1998.
 
* Kilpatrick, Anne Osborne, and James A. Johnson (eds.). ''Handbook of Health Administration and Policy''. CRC Press, 1998.
 
* Lewenson, Sandra B., and Eleanor Krohn Herrman (eds.). ''Capturing Nursing History''. Springer Publishing Company, 2007. ISBN 978-0826115669
 
* Lewenson, Sandra B., and Eleanor Krohn Herrman (eds.). ''Capturing Nursing History''. Springer Publishing Company, 2007. ISBN 978-0826115669
 
* Lewis, Milton J. ''Medicine and Care of the Dying: A Modern History''. Oxford University Press, 2006. ISBN 978-0195175486
 
* Lewis, Milton J. ''Medicine and Care of the Dying: A Modern History''. Oxford University Press, 2006. ISBN 978-0195175486
 
* Moscrop, Janet, and Joy Robbins. ''Caring for the Dying Patient and the Family''. Springer, 1995. ISBN 978-1565933286
 
* Moscrop, Janet, and Joy Robbins. ''Caring for the Dying Patient and the Family''. Springer, 1995. ISBN 978-1565933286
 +
* Nies, Mary A., and Melanie McEwen. ''Community/Public Health Nursing: Promoting the Health of Populations''. Saunders, 2018. ISBN 978-0323528948
 +
* Pang, Samantha Mei-che. ''Nursing Ethics in Modern China: Conflicting Values and Competing Role Requirements''. Brill Rodopi, 2003. ISBN 978-9042009448
 +
* Parry, Eldryd, Richard Godfrey, David Mabey, and Geoffrey Gill (eds.). ''Principles of Medicine in Africa''. Cambridge University Press, 2004. ISBN 978-0521806169
 
* Poor, Belinda, and Gail P. Poirrier. ''End of Life Nursing Care''. Jones & Bartlett, 2001.
 
* Poor, Belinda, and Gail P. Poirrier. ''End of Life Nursing Care''. Jones & Bartlett, 2001.
 
* Saunders, Cicely M., and Robert Kastenbaum (eds.). ''Hospice Care on the International Scene''. Springer Pub. Co., 1997. ISBN 978-0826195807
 
* Saunders, Cicely M., and Robert Kastenbaum (eds.). ''Hospice Care on the International Scene''. Springer Pub. Co., 1997. ISBN 978-0826195807
 +
* Sheehan, Denice Kopchak, Walter B. Forman, Judith A. Kitzes, and Robert P. Anderson. ''Hospice and Palliative Care: Concepts and Practice''. Jones & Bartlett Learning, 2003. ISBN 978-0763715663
 
* Spratt, John S., Rhonda L. Hawley, and Robert E. Hoye (eds.). ''Home Health Care: Principles and Practices''. Routledge, 1996. ISBN 978-1884015939
 
* Spratt, John S., Rhonda L. Hawley, and Robert E. Hoye (eds.). ''Home Health Care: Principles and Practices''. Routledge, 1996. ISBN 978-1884015939
 +
* Sykes, Nigel, Michael Bennet, and Chun-su Yuan. ''Clinical Pain Management''. CRC Press, 2008. ISBN 978-0340940075
 
* Worpole, Ken. ''Modern Hospice Design: The Architecture of Palliative Care''. Routledge, 2009. ISBN 978-0415451802
 
* Worpole, Ken. ''Modern Hospice Design: The Architecture of Palliative Care''. Routledge, 2009. ISBN 978-0415451802
  
 
==External links==
 
==External links==
−
All links retrieved  
+
All links retrieved September 25, 2020.
 
* [https://hospicefoundation.org/Hospice-Care/Hospice-Services What is Hospice?] ''Hospice Foundation of America''
 
* [https://hospicefoundation.org/Hospice-Care/Hospice-Services What is Hospice?] ''Hospice Foundation of America''
 
* [https://www.nia.nih.gov/health/what-are-palliative-care-and-hospice-care What Are Palliative Care and Hospice Care?] ''National Institute on Aging''
 
* [https://www.nia.nih.gov/health/what-are-palliative-care-and-hospice-care What Are Palliative Care and Hospice Care?] ''National Institute on Aging''

Latest revision as of 20:47, 25 September 2020

St Christopher's Hospice in London, widely considered the first modern hospice

Hospice care is a type of health care that focuses on the palliation of a terminally ill patient's pain and symptoms, while attending to their emotional and spiritual needs at the end of their life. Hospice care prioritizes comfort and quality of life by reducing pain and suffering, providing an alternative to therapies focused on life-prolonging measures that may be arduous, likely to cause more symptoms, or are not aligned with a person's goals. The development of such end of life care balances the efforts of modern medicine to find ways to prolong life, regardless of the quality of life.

Hospice care in the United States is largely defined by the practices of the Medicare system and other health insurance providers, which cover inpatient or at home hospice care for patients with terminal diseases who are estimated to live six months or less. Hospice benefits includes access to a multidisciplinary treatment team specialized in end of life care and can be accessed in the home, long term care facility, or the hospital.

Outside the United States, the term tends to be primarily associated with the particular buildings or institutions that specialize in such care. Hospice care includes assistance for patients' families to help them cope and provide care and support to keep the patient at home if possible. Bereavement counseling for the family is also included as well as spiritual guidance in accordance with their faith.

Philosophy

The goal of hospice care is to prioritize comfort, quality of life, and individual wishes. How comfort is defined is up to each individual or, if the patient is incapacitated, the patient's family. This can include addressing physical, emotional, spiritual and/or social needs. In hospice care, patient-directed goals are integral and interwoven throughout the care.[1] Hospices typically do not perform treatments that are meant to diagnose or cure an illness but also do not include treatments that hasten death.[2]

The modern hospice concept is focused on "palliative care," a term coined by Canadian physician Balfour Mount to describe an interdisciplinary medical caregiving approach aimed at optimizing quality of life and mitigating suffering among people with serious, complex illness. Mount created the first palliative care ward at the Royal-Victoria Hospital in Montreal in 1973.

Hospice care provides palliative care for the incurably ill who are expected to die within six months. In hospice care, the main guardians are the family care giver(s) and a hospice nurse/team who make periodic visits. Hospice can be administered in a nursing home, hospice building, or sometimes a hospital; however, it is most commonly practiced in the home.[3]

History

Early development

The Hospice Comtesseis, a seventeenth-century hospice in the Old Town area of Lille, France, first built in 1236 by Joan, Countess of Flanders. It is now a museum on the history of the hospice.

The word "hospice" derives from Latin hospitum, meaning hospitality or place of rest and protection for the ill and weary.[2] In Western society, the concept of hospice began evolving in Europe in the eleventh century. In Roman Catholic tradition, hospices were places of hospitality for the sick, wounded, or dying, as well as for travelers and pilgrims.

Historians believe the first hospices originated in Malta around 1065, dedicated to caring for the ill and dying en route to and from the Holy Land.[4] The rise of the European Crusading movement in the 1090s placed the incurably ill into places dedicated to treatment.[5]

Hospice Saint Vincent de Paul, at the Saint Vincent de Paul Church built in 1888 in Jerusalem

In the early fourteenth century, the order of the Knights Hospitaller of St. John of Jerusalem opened the first hospice in Rhodes.[5] Hospices flourished in the Middle Ages, but languished as religious orders became dispersed.[4] They were revived in the seventeenth century in France by the Daughters of Charity of Saint Vincent de Paul.[5] France continued to see development in the hospice field; the hospice of L'Association des Dames du Calvaire, founded by Jeanne Garnier, opened in 1843.[6] Six other hospices followed before 1900.[6]

In the United Kingdom. Attention was drawn to the needs of the terminally ill in the middle of the nineteenth century, with Lancet and the British Medical Journal publishing articles pointing to the need of the impoverished terminally ill for good care and sanitary conditions. Steps were taken to remedy inadequate facilities with the opening of the Friedenheim in London, which by 1892 offered 35 beds to patients dying of tuberculosis. Four more hospices were established in London by 1905.[6]

Australia, too, saw active hospice development, with notable hospices including the Home for Incurables in Adelaide (1879), the Home of Peace (1902) and the Anglican House of Peace for the Dying in Sydney (1907). In 1899 New York City, the Servants for Relief of Incurable Cancer opened St. Rose's Hospice, which soon expanded to six locations in other cities.[6]

The more influential early developers of Hospice included the Irish Religious Sisters of Charity, who opened Our Lady's Hospice in Harold's Cross, Dublin, Ireland in 1879. It served many as 20,000 people—primarily suffering tuberculosis and cancer—dying there between 1845 and 1945.[6] The Sisters of Charity expanded internationally, opening the Sacred Heart Hospice for the Dying in Sydney in 1890, with hospices in Melbourne and New South Wales following in the 1930s.[6] In 1905, they opened St Joseph's Hospice in London.[5]

Modern hospice care

The first modern hospice care was created by Cicely Saunders in 1967. Dame Cicely Saunders was a British registered nurse whose chronic health problems forced her to pursue a career in medical social work. The relationship she developed with a dying Polish refugee helped solidify her ideas that terminally ill patients needed compassionate care to help address their fears and concerns as well as palliative comfort for physical symptoms.[7] After the refugee's death, Saunders began volunteering at St Luke's Home for the Dying Poor, where a physician told her that she could best influence the treatment of the terminally ill as a physician.[7] Saunders entered medical school while continuing her volunteer work at St. Joseph's. When she completed her degree in 1957, she took a position there.[7]

Saunders emphasized focusing on the patient rather than the disease and introduced the notion of "total pain," which included psychological and spiritual as well as physical discomfort.[8] She experimented with opioids for controlling physical pain, and also considered the needs of the patient's family. She developed many foundational principles of modern hospice care at St Joseph's.[5]

Saunders disseminated her philosophy internationally in a series of tours of the United States beginning in 1963.[9][10]

At about the same time, in 1965, Swiss psychiatrist Elisabeth Kübler-Ross began to consider social responses to terminal illness, which she found inadequate at the Chicago hospital where her American physician husband was employed. Her 1969 best-seller, On Death and Dying, influenced the medical profession's response to the terminally ill.[11] Along with Saunders and other thanatology pioneers, she helped to focus attention on the types of care available to the dying.[9]

In 1967, Saunders opened St Christopher's Hospice in South London, England. Florence Wald, the dean of Yale School of Nursing who had heard Saunders speak in America, spent a month working with Saunders there in 1969 before bringing the principles of modern hospice care back to the United States.[5] In 1974, Wald led the founding of the first hospice in the United States, the Connecticut Hospice located in Branford, Connecticut. Later in life, Wald became interested in the provision of hospice care within prisons.[12]

Another early hospice program in the United States, Alive Hospice, was founded in Nashville, Tennessee, on November 14, 1975.[13] By 1978 the National Hospice Organization had been formed, and by 1979 Ann G. Blues had been elected as president and principles of hospice care had been addressed.[14]

In 1984, Dr. Josefina Magno, who had been instrumental in forming the American Academy of Hospice and Palliative Medicine and sat as first executive director of the US National Hospice Organization, founded the International Hospice Institute. In 1996 it became the International Hospice Institute and College and later the International Association for Hospice and Palliative Care (IAHPC).[15] Magno had seen "more than 8000 hospice and palliative services established in more than 100 countries."[16] The IAHPC follows the philosophy that each country should develop a palliative care model based on its own resources and conditions.[17]

National variations

Hospice care in the United States is largely defined by the practices of the Medicare system and other health insurance providers, which cover inpatient or at home hospice care for patients with terminal diseases who are estimated to live six months or less.

Outside the United States, the term tends to be primarily associated with the particular buildings or institutions that specialize in such care. Such institutions may similarly provide care mostly in an end-of-life setting, but they may also be available for patients with other palliative care needs. Hospice care includes assistance for patients' families to help them cope with what is happening and provide care and support to keep the patient at home.

World Hospice and Palliative Care Day

In 2006, the first World Hospice and Palliative Care Day was organized by the Worldwide Palliative Care Alliance, a network of hospice and palliative care national and regional organization that support the development of hospice and palliative care worldwide. The event takes place on the second Saturday of October every year.[18]

Africa

The first hospice in Sub-Saharan Africa opened in 1980 in Harare (Salisbury), Zimbabwe.[19] In spite of skepticism in the African medical community, the hospice movement spread, and in 1987 the Hospice Palliative Care Association of South Africa formed.[20] Nairobi Hospice was established in 1988 in Nairobi, Kenya.[21]

Hospice Africa Uganda (HAU) founded by Anne Merriman, began offering services in 1993 in a two-bedroom house loaned for the purpose by Nsambya Hospital, Kampala, Uganda, supported by [[Hospice Africa] charity established in Liverpool UK, Merriman's birthplace. Investing in education programs with the ethos that the patient and family are at the center of the program, an affordable and culturally appropriate model for Africa was developed. A home based care model of palliative care is supplemented with hospital consultations where patients are allowed home based on their health needs and their own wishes. HAU centers also treat outpatients. These complementary services allow patients flexibility and options when facing the end of life. Today, HAU is recognized in Uganda as a center of excellence and a model in community based care.[22]

Today, Hospice Africa continues its vision of palliative care for all those in need, providing both care to patients and training for providers in over 30 countries across Africa.[23]

North America

Canada

The Canadian hospice movement focuses primarily on palliative care in a hospital setting.[24][25] Having read Kubler-Ross's writings, Balfour Mount studied the experiences of the terminally ill at Royal Victoria Hospital, Montreal. The "abysmal inadequacy," as he termed it, that he found there prompted him to spend a week with Cicely Saunders at St. Christopher's. Inspired, Mount decided to adapt Saunders' model for Canada. Given differences in medical funding, he determined that a hospital-based approach would be more affordable, creating a specialized ward at Royal Victoria in January, 1975.[25] Canada's official languages include English and French, leading Mount to propose the term "palliative care ward," as the word hospice was already used in France to refer to nursing homes. Hundreds of palliative care programs followed throughout Canada through the 1970s and 1980s.[25]

In 1991, the Canadian Hospice Palliative Care Association (CHPCA) was formally established as a national charitable organization with the mission to provide leadership in hospice palliative care in Canada. The organization works to advance and advocate for quality end-of-life/hospice palliative care throughout Canada. CHPCA works in close partnership with other national organizations with the goal of ensuring that all Canadians have access to quality hospice palliative care.[26]

United States

Hospice care in the United States has grown from a volunteer-led movement to improve care for people dying alone, isolated, or in hospitals, to a significant part of the health care system. The first US-based palliative medicine and hospice service program was started in 1987 by Declan Walsh at the Cleveland Clinic Cancer Center in Cleveland, Ohio. The program evolved into The Harry R. Horvitz Center for Palliative Medicine, which was designated as a World Health Organization international demonstration project and accredited by the European Society of Medical Oncology as an Integrated Center of Oncology and Palliative Care. Other programs followed: most notably the Palliative Care Program at the Medical College of Wisconsin (1993); Pain and Palliative Care Service, Memorial Sloan-Kettering Cancer Center (1996); and The Lilian and Benjamin Hertzberg Palliative Care Institute, Mount Sinai School of Medicine (1997).[27]

Today, hospice benefits include access to a multidisciplinary treatment team specialized in end of life care. These benefits are largely defined by the practices of the Medicare system and other health insurance providers, which cover inpatient or at home hospice care for patients with terminal diseases who are estimated to live six months or less. Hospice care under the Medicare Hospice Benefit requires documentation from two physicians estimating a person has less than six months to live if the disease follows its usual course.[2] Hospice is the only Medicare benefit that includes pharmaceuticals, medical equipment, twenty-four-hour/seven-day-a-week access to care, and support for loved ones following a death. Hospice care is covered by Medicaid and most private insurance plans.

The Centers for Medicare and Medicaid Services has defined four kinds, or “levels,” of hospice care: hospice care at home, where services that support the patient and their family are provided at home; "continuous care," which is round-the-clock hospice care at home; inpatient hospice care, where the patient's symptoms cannot be managed at home; and respite care which offers a brief stay at an inpatient hospice facility to give primary caregivers a break.[28]

United Kingdom

Trinity Hospice shop, King Street, Hammersmith, London

The first hospice to open in the United Kingdom was the Royal Trinity Hospice in Clapham south London in 1891, on the initiative of the Hoare banking family.[29] More than half a century later, a hospice movement developed after Dame Cicely Saunders opened St Christopher's Hospice in 1967, widely considered the first modern hospice.

Hospice funding varies from 100 percent by the National Health Service to almost 100 percent by charities, but the service is always free to patients. The UK's palliative care has been ranked as the best in the world "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."[30]

Other nations

Hospice and palliative care are well-established in Australia, New Zealand, and much of Asia and Western Europe.

The first hospice in New Zealand, Mary Potter Hospice, opened on June 1979 in Wellington. Later that year, Te Omanga Hospice in Lower Hutt, and Saint Joseph's Mercy Hospice in Auckland, were also opened. From these small beginnings the hospice movement in New Zealand grew into 42 hospices by the beginning of the twenty-first century.[31]

Developing out of the Australian Association for Hospice and Palliative Care Inc., which started in 1991, Palliative Care Australia launched in 1998 with the mission to influence, foster and promote the delivery of quality palliative care for all who need it, when and where they need it.[32]

Japan opened its first hospice in 1981, officially hosting over 200 by 2010. The Japan Hospice/Palliative Care Foundation was established on December 28, 2000, with the following mission:

  • conducting investigation and research for the purpose of improving the quality of hospice/palliative care.
  • providing technical support to the staff involved, including doctors, nurses, pharmacists, co-medical staff and social workers.
  • sponsoring PR activities and international exchange related to hospice/palliative care.[33]

India's first hospice, Shanti Avedna Ashram, opened in Bombay in 1986.[34]

The first modern free-standing hospice in China opened in Shanghai in 1988.[35] The first hospice unit in Taiwan, where the term for hospice translates as "peaceful care", opened in 1990.[36]

The first hospice in the Nordics opened in Tampere, Finland in 1988. Their treatment emphasizes dealing with the patient in a holistic manner, especially valuing the dignity and individuality of each patient. In addition to the inpatient facility, patients may receive hospice home care while staying at home.[37]

Hospice care at home

Nurses working in hospice home settings aim to relieve pain and holistically support their patients and patients families.[38]

The hospice home health nurse must be skilled in both physical care and psychosocial care, and be aware of cultural differences and needs and should aim to meet them. Most nurses will work with a team that includes a physician, social worker, and possibly a spiritual care counselor. Some of the nurse’s duties will include reassuring family members, and ensuring adequate pain control. The goal of hospice care is to meet the needs of both the patient and family, knowing that a home death is not always the best outcome. A pain free death is possible, and scheduled opioid pain medications are appropriate in this case. The hospice nurse also supports the family after death and may connect the family to bereavement services.[38]

Children's Hospice

Demelza Hospice Care for Children in Kent, England.

A children's hospice or pediatric hospice is a hospice specifically designed to improve the quality of life of children and young people who are not expected to reach adulthood, helping with the emotional and physical challenges they face, and also providing respite care for their families.

Pediatric hospice care is family-centric rather than patient-centric, with the parents of the sick child taking the lead in determining the plan of care in collaboration with their physician. The aim is to enable the family to provide the support the child deserves, without undermining care and support for the rest of the family.[39]

A typical children's hospice service offers:

  • Specialist children's palliative care, respite care, emergency, and terminal care (this may be at the hospice or within the child's home)
  • Support from social workers and therapists trained in pediatric hospice care
  • Availability of chaplains to offer spiritual and emotional support for the child and the family
  • Trained volunteers who can spend time with the child or siblings, to give the parents some time alone
  • Bereavement counseling and support, typically offered as individual home support, as well as groups and work with brothers or sisters

Helen House in Oxfordshire, England was the world's first children's hospice, opening in November, 1982. Helen House sprang from a friendship between Sister Frances Dominica and the parents of a seriously ill little girl called Helen, who lived at home with her family but required 24-hour care. Helen House has inspired the establishment of almost 50 other children's hospices across the UK and around the world.[40]

The first children's hospice in Scotland, Rachel House, run by Children's Hospice Association Scotland opened in March 1996. Following its success, Robin House was opened in Balloch, Dunbartonshire, in 2005.[41]

The children's hospice movement is still in a relatively early stage in the United States, where many of the functions of a children's hospice are provided by children's hospitals. When physicians find that a child can no longer be medically cured, along with the parents a decision is made to end care, keeping in mind the best interests of the child. The place of death (home, hospice, hospital) should be a matter of individual choice.[42]

Most parents of children who have serious development disorders actively share the end of life decision making process. Parents recognize the importance of advocating for the best interest of their child. Visible suffering, remaining quality of life, and the child's will to survive are important factors for parents in making end of life decisions.[43]

Notes

  1. ↑ Anne Osborne Kilpatrick and James A. Johnson (eds.), Handbook of Health Administration and Policy (CRC Press, 1998).
  2. ↑ 2.0 2.1 2.2 Katherine Marshall and Deborah Hale, Understanding Hospice Home Healthcare Now 35(7) (July/August 2017): 396-397. Retrieved September 19, 2020.
  3. ↑ What's the Difference Between Palliative Care and Hospice Care? WebMD. Retrieved September 19, 2020.
  4. ↑ 4.0 4.1 Janet Moscrop and Joy Robbins, Caring for the Dying Patient and the Family (Springer, 1995, ISBN 978-1565933286).
  5. ↑ 5.0 5.1 5.2 5.3 5.4 5.5 Stephen R. Connor, Hospice: Practice, Pitfalls, and Promise (Routledge, 1997, ISBN 978-1560325123).
  6. ↑ 6.0 6.1 6.2 6.3 6.4 6.5 Milton J. Lewis, Medicine and Care of the Dying: A Modern History (Oxford University Press, 2006, ISBN 978-0195175486).
  7. ↑ 7.0 7.1 7.2 Belinda Poor and Gail P. Poirrier, End of Life Nursing Care (Jones & Bartlett, 2001).
  8. ↑ David Clark, Total Pain: The Work of Cicely Saunders and the Hospice Movement American Pain Society Bulletin 10(4) (2000): 13-15. Retrieved September 19, 2020.
  9. ↑ 9.0 9.1 John S. Spratt, Rhonda L. Hawley, and Robert E. Hoye (eds.), Home Health Care: Principles and Practices (Routledge, 1996, ISBN 978-1884015939).
  10. ↑ Sandra B. Lewenson and Eleanor Krohn Herrman (eds.), Capturing Nursing History (Springer Publishing Company, 2007, ISBN 978-0826115669).
  11. ↑ Laura Newman, Elisabeth Kübler-Ross British Medical Journal 329(7466) (2004): 627. Retrieved September 21, 2020.
  12. ↑ Florence Wald National Women's Hall of Fame. Retrieved September 19, 2020.
  13. ↑ About Alive Alive Hospice. Retrieved September 21, 2020.
  14. ↑ Ann Goben Blues, Hospice and Palliative Nursing Care (Grune and Stratton, 1984, ISBN 978-0808915775).
  15. ↑ David Clark, Cicely Saunders: Founder of the Hospice Movement, Selected Letters 1959-1999 (Oxford University Press, 2002, ISBN 978-0198516071).
  16. ↑ Laura Newman, Josefina Bautista Magno British Medical Journal 327(7417) (2003): 753. Retrieved September 21, 2020.
  17. ↑ IAHPC History International Association for Hospice & Palliative Care. Retrieved September 21, 2020.
  18. ↑ World Hospice and Palliative Care Day Retrieved September 22, 2020.
  19. ↑ Eldryd Parry, Richard Godfrey, David Mabey, and Geoffrey Gill (eds.), Principles of Medicine in Africa (Cambridge University Press, 2004, ISBN 978-0521806169).
  20. ↑ About HPCA Hospice Palliative Care Association of South Africa. Retrieved September 22, 2020.
  21. ↑ Nairobi Hospice Retrieved September 22, 2020.
  22. ↑ History of Hospice Africa Hospice Africa Uganda. Retrieved September 22, 2020.
  23. ↑ Hospice Africa. Retrieved September 22, 2020.
  24. ↑ Denice Kopchak Sheehan, Walter B. Forman, Judith A. Kitzes, and Robert P. Anderson, Hospice and Palliative Care: Concepts and Practice (Jones & Bartlett Learning, 2003, ISBN 978-0763715663).
  25. ↑ 25.0 25.1 25.2 Georgina Feldberg, Molly Ladd-Taylor, and Alison Li, Women, Health and Nation: Canada and the United States Since 1945 (McGill-Queen's University Press, 2003, ISBN 978-0773525016).
  26. ↑ Canadian Hospice Palliative Care Association Retrieved September 23, 2020.
  27. ↑ Daniel M. Fox and Rosemary Gibson, Pioneer Programs in Palliative Care: Nine Case Studies Milbank Report, October 2000. Retrieved September 24, 2020.
  28. ↑ The 4 Levels of Hospice Care VITAS Healthcare. Retrieved September 23, 2020.
  29. ↑ Our history Royal Trinity Hospice. Retrieved September 24, 2020.
  30. ↑ David Line, Quality of Death Index 2015: Ranking palliative care across the world The Economist Intelligence Unit, October 6, 2015. Retrieved September 24, 2020.
  31. ↑ Michael McCabe, The Hospice Movement in New Zealand - 25 Years On The Nathaniel Centre, August 2004. Retrieved September 24, 2020.
  32. ↑ About PCA Palliative Care Australia. Retrieved September 24, 2020.
  33. ↑ Objectives of JHPF Japan Hospice Palliative Care Foundation. Retrieved September 24, 2020.
  34. ↑ Nigel Sykes, Michael Bennet, and Chun-su Yuan, Clinical Pain Management (CRC Press, 2008, ISBN 978-0340940075).
  35. ↑ Samantha Mei-che Pang, Nursing Ethics in Modern China: Conflicting Values and Competing Role Requirements (Brill Rodopi, 2003, ISBN 978-9042009448).
  36. ↑ Yuen-Liang Lai and Wen Hao Su, Palliative medicine and the hospice movement in Taiwan Supportive Care in Cancer 5(5) (September 1997): 348–350. Retrieved September 23, 2020.
  37. ↑ Welcome to Pirkanmaa Hospice Pirkanmaan Hoitokoti. Retrieved September 24, 2020.
  38. ↑ 38.0 38.1 Mary A. Nies and Melanie McEwen, Community/Public Health Nursing: Promoting the Health of Populations (Saunders, 2018, ISBN 978-0323528948).
  39. ↑ Pediatric Hospice Care VITAS Healthcare. Retrieved September 24, 2020.
  40. ↑ Our History Helen & Douglas House. Retrieved September 25, 2020.
  41. ↑ Brian McIver, Inspirational Scottish CHAS hospice Rachel House celebrates its 20th birthday Daily Record, March 21, 2016.
  42. ↑ Michele Puckey and Andrew Bush, "Passage to Paradise" Ethics and end-of-life decisions in children Paediatric Respiratory Reviews 12(2) (2011)139–143. Retrieved September 25, 2020.
  43. ↑ I.H. Zaal-Schuller, M.A. de Vos, P.M. Ewals, J.B. van Goudoever, and D.L. Willems, End-of-life decision-making for children with severe developmental disabilities: The parental perspective Research in Developmental Disabilities 49-50 (2016):235–246. Retrieved September 25, 2020.

References
ISBN links support NWE through referral fees

  • Blues, Ann Goben. Hospice and Palliative Nursing Care. Grune and Stratton, 1984. ISBN 978-0808915775
  • Clark, David. Cicely Saunders: Founder of the Hospice Movement, Selected Letters 1959-1999. Oxford University Press, 2002. ISBN 978-0198516071
  • Connor, Stephen R. Hospice: Practice, Pitfalls, and Promise. Routledge, 1997. ISBN 978-1560325123
  • Feldberg, Georgina, Molly Ladd-Taylor, and Alison Li. Women, Health and Nation: Canada and the United States Since 1945. McGill-Queen's University Press, 2003. ISBN 978-0773525016
  • Kilpatrick, Anne Osborne, and James A. Johnson (eds.). Handbook of Health Administration and Policy. CRC Press, 1998.
  • Lewenson, Sandra B., and Eleanor Krohn Herrman (eds.). Capturing Nursing History. Springer Publishing Company, 2007. ISBN 978-0826115669
  • Lewis, Milton J. Medicine and Care of the Dying: A Modern History. Oxford University Press, 2006. ISBN 978-0195175486
  • Moscrop, Janet, and Joy Robbins. Caring for the Dying Patient and the Family. Springer, 1995. ISBN 978-1565933286
  • Nies, Mary A., and Melanie McEwen. Community/Public Health Nursing: Promoting the Health of Populations. Saunders, 2018. ISBN 978-0323528948
  • Pang, Samantha Mei-che. Nursing Ethics in Modern China: Conflicting Values and Competing Role Requirements. Brill Rodopi, 2003. ISBN 978-9042009448
  • Parry, Eldryd, Richard Godfrey, David Mabey, and Geoffrey Gill (eds.). Principles of Medicine in Africa. Cambridge University Press, 2004. ISBN 978-0521806169
  • Poor, Belinda, and Gail P. Poirrier. End of Life Nursing Care. Jones & Bartlett, 2001.
  • Saunders, Cicely M., and Robert Kastenbaum (eds.). Hospice Care on the International Scene. Springer Pub. Co., 1997. ISBN 978-0826195807
  • Sheehan, Denice Kopchak, Walter B. Forman, Judith A. Kitzes, and Robert P. Anderson. Hospice and Palliative Care: Concepts and Practice. Jones & Bartlett Learning, 2003. ISBN 978-0763715663
  • Spratt, John S., Rhonda L. Hawley, and Robert E. Hoye (eds.). Home Health Care: Principles and Practices. Routledge, 1996. ISBN 978-1884015939
  • Sykes, Nigel, Michael Bennet, and Chun-su Yuan. Clinical Pain Management. CRC Press, 2008. ISBN 978-0340940075
  • Worpole, Ken. Modern Hospice Design: The Architecture of Palliative Care. Routledge, 2009. ISBN 978-0415451802

External links

All links retrieved September 25, 2020.


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