Hospice care is a type of health care that focuses on the
palliation
Palliative care (derived from the Latin root , or 'to cloak') is an interdisciplinary medical caregiving approach aimed at optimizing quality of life and mitigating suffering among people with serious, complex, and often terminal illnesses. Wit ...
of a
terminally ill
Terminal illness or end-stage disease is a disease that cannot be cured or adequately treated and is expected to result in the death of the patient. This term is more commonly used for progressive diseases such as cancer, dementia or advanced he ...
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.
Hospice care in the United States
In the United States, hospice care is a type and philosophy of end-of-life care which focuses on the palliation of a terminally ill patient's symptoms. These symptoms can be physical, emotional, spiritual or social in nature. The concept of hos ...
is largely defined by the practices of the
Medicare system and other
health insurance
Health insurance or medical insurance (also known as medical aid in South Africa) is a type of insurance that covers the whole or a part of the risk of a person incurring medical expenses. As with other types of insurance, risk is shared among ma ...
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 include 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. 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.
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.
Hospices typically do not perform treatments that are meant to diagnose or cure an illness but also do not include treatments that hasten death.
Instead, hospices focus on
palliative care
Palliative care (derived from the Latin root , or 'to cloak') is an interdisciplinary medical caregiving approach aimed at optimizing quality of life and mitigating suffering among people with serious, complex, and often terminal illnesses. Wit ...
to relieve pain and symptoms.
History overview
Early development
The word "hospice" derives from
Latin
Latin (, or , ) is a classical language belonging to the Italic branch of the Indo-European languages. Latin was originally a dialect spoken in the lower Tiber area (then known as Latium) around present-day Rome, but through the power of the ...
''hospitum'', meaning hospitality or place of rest and protection for the ill and weary.
Historians believe the first hospices originated in
Malta
Malta ( , , ), officially the Republic of Malta ( mt, Repubblika ta' Malta ), is an island country in the Mediterranean Sea. It consists of an archipelago, between Italy and Libya, and is often considered a part of Southern Europe. It lies ...
around 1065, dedicated to caring for the ill and dying en route to and from the Holy Land. The rise of the European
Crusading movement
The First Crusade inspired the crusading movement, which became an important part of late medieval western culture. The movement influenced the Church, politics, the economy, society and created a distinct ideology that described, regulated, ...
in the 1090s placed the incurably ill into places dedicated to treatment.
In the early 14th century, the order of the
Knights Hospitaller of St. John of Jerusalem opened the first hospice in
Rhodes
Rhodes (; el, Ρόδος , translit=Ródos ) is the largest and the historical capital of the Dodecanese islands of Greece. Administratively, the island forms a separate municipality within the Rhodes regional unit, which is part of the So ...
.
[Connor, 5.] Hospices flourished in the
Middle Ages
In the history of Europe, the Middle Ages or medieval period lasted approximately from the late 5th to the late 15th centuries, similar to the post-classical period of global history. It began with the fall of the Western Roman Empire a ...
, but languished as religious orders became dispersed.
[ They were revived in the 17th century in ]France
France (), officially the French Republic ( ), is a country primarily located in Western Europe. It also comprises of Overseas France, overseas regions and territories in the Americas and the Atlantic Ocean, Atlantic, Pacific Ocean, Pac ...
by the Daughters of Charity of Saint Vincent de Paul
The Company of the Daughters of Charity of Saint Vincent de Paul ( la, Societas Filiarum Caritatis a Sancto Vincentio de Paulo), commonly called the Daughters of Charity or Sisters of Charity of Saint Vincent De Paul, is a Society of Apostoli ...
.[ 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.] Six other hospices followed before 1900.[
Meanwhile, hospices developed in other areas. In the ]United Kingdom
The United Kingdom of Great Britain and Northern Ireland, commonly known as the United Kingdom (UK) or Britain, is a country in Europe, off the north-western coast of the continental mainland. It comprises England, Scotland, Wales and North ...
attention was drawn to the needs of the terminally ill in the middle of the 19th century, with '' Lancet'' and the ''British Medical Journal
''The BMJ'' is a weekly peer-reviewed medical trade journal, published by the trade union the British Medical Association (BMA). ''The BMJ'' has editorial freedom from the BMA. It is one of the world's oldest general medical journals. Origi ...
'' publishing articles pointing to the need of the impoverished terminally ill for good care and sanitary conditions.[Lewis, 21.] 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
Tuberculosis (TB) is an infectious disease usually caused by '' Mycobacterium tuberculosis'' (MTB) bacteria. Tuberculosis generally affects the lungs, but it can also affect other parts of the body. Most infections show no symptoms, in ...
.[ Four more hospices were established in London by 1905,][ including the Hostel of God on Clapham Common founded in 1891 by Clara Maria Hole, Mother Superior of Sisterhood of St James' (Anglican) and taken over in 1896 by the ]Society of Saint Margaret
The Society of Saint Margaret (SSM) is an order of women in the Anglican Church. The Order is active in England, Haiti, Sri Lanka, and the United States and formerly Scotland.
History
The Sisters of St Margaret were founded in 1855 by Dr John ...
of East Grinstead. Australia
Australia, officially the Commonwealth of Australia, is a Sovereign state, sovereign country comprising the mainland of the Australia (continent), Australian continent, the island of Tasmania, and numerous List of islands of Australia, sma ...
, too, saw active hospice development, with notable hospices including the Home for Incurables in Adelaide
Adelaide ( ) is the capital city of South Australia, the state's largest city and the fifth-most populous city in Australia. "Adelaide" may refer to either Greater Adelaide (including the Adelaide Hills) or the Adelaide city centre. The dem ...
(1879), the Home of Peace (1902) and the Anglican House of Peace for the Dying in Sydney
Sydney ( ) is the capital city of the state of New South Wales, and the most populous city in both Australia and Oceania. Located on Australia's east coast, the metropolis surrounds Sydney Harbour and extends about towards the Blue Mountain ...
(1907). In 1899 New York City
New York, often called New York City or NYC, is the List of United States cities by population, most populous city in the United States. With a 2020 population of 8,804,190 distributed over , New York City is also the L ...
, the Servants for Relief of Incurable Cancer opened St. Rose's Hospice, which soon expanded to six locations in other cities.[
The more influential early developers of hospice included the Irish ]Religious Sisters of Charity The Religious Sisters of Charity or Irish Sisters of Charity is a Roman Catholic religious institute founded by Mary Aikenhead in Ireland on 15 January 1815. Its motto is ('The love Christ urges us on'; ).
The institute has its headquarters in Du ...
, who opened Our Lady's Hospice
Our Lady's Hospice & Care Services is a hospice and health care provider with two locations: one at Harold's Cross, Dublin and a satellite facility at Blackrock, County Dublin in Ireland. It provides specialist care for people with a range of n ...
in Harold's Cross
Harold's Cross () is an affluent urban village and inner suburb on the south side of Dublin, Ireland in the postal district D6W. The River Poddle runs through it, though largely in an underground culvert, and it holds a major cemetery, Mount ...
, Dublin
Dublin (; , or ) is the capital and largest city of Republic of Ireland, Ireland. On a bay at the mouth of the River Liffey, it is in the Provinces of Ireland, province of Leinster, bordered on the south by the Dublin Mountains, a part of th ...
, Ireland
Ireland ( ; ga, Éire ; Ulster Scots dialect, Ulster-Scots: ) is an island in the Atlantic Ocean, North Atlantic Ocean, in Northwestern Europe, north-western Europe. It is separated from Great Britain to its east by the North Channel (Grea ...
in 1879.[ It served many as 20,000 people—primarily with tuberculosis and ]cancer
Cancer is a group of diseases involving abnormal cell growth with the potential to invade or spread to other parts of the body. These contrast with benign tumors, which do not spread. Possible signs and symptoms include a lump, abnormal b ...
—dying there between 1845 and 1945.[ The Sisters of Charity expanded internationally, opening the Sacred Heart Hospice for the Dying in Sydney in 1890, with hospices in ]Melbourne
Melbourne ( ; Boonwurrung/Woiwurrung: ''Narrm'' or ''Naarm'') is the capital and most populous city of the Australian state of Victoria, and the second-most populous city in both Australia and Oceania. Its name generally refers to a met ...
and New South Wales
)
, nickname =
, image_map = New South Wales in Australia.svg
, map_caption = Location of New South Wales in AustraliaCoordinates:
, subdivision_type = Country
, subdivision_name = Australia
, established_title = Before federation
, es ...
following in the 1930s. In 1905, they opened St Joseph's Hospice in London
London is the capital and largest city of England and the United Kingdom, with a population of just under 9 million. It stands on the River Thames in south-east England at the head of a estuary down to the North Sea, and has been a majo ...
.[
]
Hospice movement
In Western society, the concept of hospice began evolving in Europe in the 11th century. In Roman Catholic
Roman or Romans most often refers to:
*Rome, the capital city of Italy
*Ancient Rome, Roman civilization from 8th century BC to 5th century AD
*Roman people, the people of ancient Rome
*'' Epistle to the Romans'', shortened to ''Romans'', a lette ...
tradition, hospices were places of hospitality for the sick, wounded, or dying, as well as for travelers and pilgrims. The modern hospice concept includes palliative care for the incurably ill in institutions as hospital
A hospital is a health care institution providing patient treatment with specialized health science and auxiliary healthcare staff and medical equipment. The best-known type of hospital is the general hospital, which typically has an emerge ...
s and nursing home
A nursing home is a facility for the residential care of elderly or disabled people. Nursing homes may also be referred to as skilled nursing facility (SNF) or long-term care facilities. Often, these terms have slightly different meanings to in ...
s, along with at-home care. The first modern hospice care was created by Dame
''Dame'' is an honorific title and the feminine form of address for the honour of damehood in many Christian chivalric orders, as well as the Orders, decorations, and medals of the United Kingdom, British honours system and those of several oth ...
Cicely Saunders
Dame Cicely Mary Strode Saunders (22 June 1918 – 14 July 2005) was an English nurse, social worker, physician and writer. She is noted for her work in terminal care research and her role in the birth of the hospice movement, emphasising the i ...
in 1967. Saunders was a British registered nurse
A registered nurse (RN) is a nurse who has graduated or successfully passed a nursing program from a recognized nursing school and met the requirements outlined by a country, state, province or similar government-authorized licensing body to o ...
whose chronic health problems forced her to pursue a career in medical social work Medical social work is a sub-discipline of social work. Medical social workers typically work in a hospital, outpatient clinic, community health agency, skilled nursing facility, long-term care facility or hospice. They work with patients and their ...
. The relationship she developed with a dying Polish
Polish may refer to:
* Anything from or related to Poland, a country in Europe
* Polish language
* Poles
Poles,, ; singular masculine: ''Polak'', singular feminine: ''Polka'' or Polish people, are a West Slavic nation and ethnic group, w ...
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. 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
A physician (American English), medical practitioner (Commonwealth English), medical doctor, or simply doctor, is a health professional who practices medicine, which is concerned with promoting, maintaining or restoring health through th ...
.[ Saunders entered ]medical school
A medical school is a tertiary educational institution, or part of such an institution, that teaches medicine, and awards a professional degree for physicians. Such medical degrees include the Bachelor of Medicine, Bachelor of Surgery (MBBS, M ...
while continuing her volunteer work at St. Joseph's. When she completed her degree in 1957, she took a position there.[
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. She experimented with ]opioid
Opioids are substances that act on opioid receptors to produce morphine-like effects. Medically they are primarily used for pain relief, including anesthesia. Other medical uses include suppression of diarrhea, replacement therapy for opioid us ...
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. Over the years these centers became more common and from the 1970s this is where they placed people to live out their final days.
She disseminated her philosophy internationally in a series of tours of the United States that began in 1963. In 1967, Saunders opened St Christopher's Hospice
St. Christopher's Hospice is a hospice in south London, England, established in 1967 by Cicely Saunders, whose work is considered the basis of modern hospice philosophy.
Legacy
Among the first staff at St. Christopher's was Florence Wald, who t ...
. Florence Wald
Florence Wald (April 19, 1917 – November 8, 2008) was an American nurse, former Dean of Yale School of Nursing, and largely credited as "the mother of the American hospice movement".[Yale School of Nursing
Yale School of Nursing (YSN) is the nursing school of Yale University, located in West Haven, Connecticut. It is among the top 20 graduate schools in the country, according to the latest rankings by U.S. News & World Report (2017). In addition to ...]
, 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, establishing Hospice, Inc. in 1971.[Sullivan, Patricia]
"Florence S. Wald, 91; U.S. Hospice Pioneer"
''The Washington Post
''The Washington Post'' (also known as the ''Post'' and, informally, ''WaPo'') is an American daily newspaper published in Washington, D.C. It is the most widely circulated newspaper within the Washington metropolitan area and has a large nati ...
'', November 13, 2008. Accessed November 13, 2008. Another early hospice program in the United States, Alive Hospice, was founded in Nashville, Tennessee
Nashville is the capital city of the U.S. state of Tennessee and the county seat, seat of Davidson County, Tennessee, Davidson County. With a population of 689,447 at the 2020 United States census, 2020 U.S. census, Nashville is the List of muni ...
, on November 14, 1975. By 1977 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. At about the same time that Saunders was disseminating her theories and developing her hospice, in 1965, Swiss psychiatrist
A psychiatrist is a physician who specializes in psychiatry, the branch of medicine devoted to the diagnosis, prevention, study, and treatment of mental disorders. Psychiatrists are physicians and evaluate patients to determine whether their sy ...
Elisabeth Kübler-Ross
Elisabeth Kübler-Ross (July 8, 1926 – August 24, 2004) was a Swiss-American psychiatrist, a pioneer in near-death studies, and author of the internationally best-selling book, '' On Death and Dying'' (1969), where she first discussed her the ...
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
On, on, or ON may refer to:
Arts and entertainment Music
* On (band), a solo project of Ken Andrews
* ''On'' (EP), a 1993 EP by Aphex Twin
* ''On'' (Echobelly album), 1995
* ''On'' (Gary Glitter album), 2001
* ''On'' (Imperial Teen album), 200 ...
'', influenced the medical profession's response to the terminally ill.[ Saunders and other ]thanatology
Thanatology is the scientific study of death and the losses brought about as a result. It investigates the mechanisms and forensic aspects of death, such as bodily changes that accompany death and the postmortem period, as well as wider psychol ...
pioneers helped to focus attention on the types of care available to them.[
In 1984, Dr. Josefina Magno, who had been instrumental in forming the ]American Academy of Hospice and Palliative Medicine
The American Academy of Hospice and Palliative Medicine (AAHPM) is a professional organization for physicians specializing in Hospice and Palliative Medicine, headquartered in Chicago, Illinois. Membership is open to all health care providers co ...
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). The IAHPC follows the philosophy that each country should develop a palliative care model based on its own resources and conditions. IAHPC founding member Dr. Derek Doyle told the ''British Medical Journal'' in 2003 that Magno had seen "more than 8000 hospice and palliative services established in more than 100 countries." Standards for Palliative and Hospice Care have been developed in countries including Australia, Canada
Canada is a country in North America. Its ten provinces and three territories extend from the Atlantic Ocean to the Pacific Ocean and northward into the Arctic Ocean, covering over , making it the world's second-largest country by tot ...
, Hungary
Hungary ( hu, Magyarország ) is a landlocked country in Central Europe. Spanning of the Carpathian Basin, it is bordered by Slovakia to the north, Ukraine to the northeast, Romania to the east and southeast, Serbia to the south, Croatia a ...
, Italy
Italy ( it, Italia ), officially the Italian Republic, ) or the Republic of Italy, is a country in Southern Europe. It is located in the middle of the Mediterranean Sea, and its territory largely coincides with the homonymous geographical re ...
, Japan
Japan ( ja, 日本, or , and formally , ''Nihonkoku'') is an island country in East Asia. It is situated in the northwest Pacific Ocean, and is bordered on the west by the Sea of Japan, while extending from the Sea of Okhotsk in the north ...
, Moldova
Moldova ( , ; ), officially the Republic of Moldova ( ro, Republica Moldova), is a Landlocked country, landlocked country in Eastern Europe. It is bordered by Romania to the west and Ukraine to the north, east, and south. The List of states ...
, Norway
Norway, officially the Kingdom of Norway, is a Nordic country in Northern Europe, the mainland territory of which comprises the western and northernmost portion of the Scandinavian Peninsula. The remote Arctic island of Jan Mayen and t ...
, Poland
Poland, officially the Republic of Poland, is a country in Central Europe. It is divided into 16 administrative provinces called voivodeships, covering an area of . Poland has a population of over 38 million and is the fifth-most populous ...
, Romania
Romania ( ; ro, România ) is a country located at the crossroads of Central Europe, Central, Eastern Europe, Eastern, and Southeast Europe, Southeastern Europe. It borders Bulgaria to the south, Ukraine to the north, Hungary to the west, S ...
, Spain
, image_flag = Bandera de España.svg
, image_coat = Escudo de España (mazonado).svg
, national_motto = ''Plus ultra'' (Latin)(English: "Further Beyond")
, national_anthem = (English: "Royal March")
, i ...
, Switzerland
). Swiss law does not designate a ''capital'' as such, but the federal parliament and government are installed in Bern, while other federal institutions, such as the federal courts, are in other cities (Bellinzona, Lausanne, Luzern, Neuchâtel ...
, the United Kingdom and the United States.
In 2006, the United States-based National Hospice and Palliative Care Organization (NHPCO) and the United Kingdom's Help the Hospices jointly commissioned an independent, international study of worldwide palliative care practices. Their survey found that 15% of the world's countries offered widespread palliative care services with integration into major health care institutions, while an additional 35% offered some form of palliative care services, in some cases localized or limited. As of 2009, an estimated 10,000 programs internationally provided palliative care, although the term hospice is not always employed to describe such services.
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. Hospice care targets the terminally ill who are expected to die within six months.
Popular media
Hospice was the subject of the Netflix
Netflix, Inc. is an American subscription video on-demand over-the-top streaming service and production company based in Los Gatos, California. Founded in 1997 by Reed Hastings and Marc Randolph in Scotts Valley, California, it offers a fil ...
2018 Academy Award-nominated short documentary '' End Game'', about terminally ill patients in a San Francisco hospital and Zen Hospice Project, featuring the work of palliative care physician BJ Miller and other palliative care clinicians. The film was executive produced by hospice and palliative care activist Shoshana R. Ungerleider.
National variations
Hospice faced resistance from professional or cultural taboo
A taboo or tabu is a social group's ban, prohibition, or avoidance of something (usually an utterance or behavior) based on the group's sense that it is excessively repulsive, sacred, or allowed only for certain persons.''Encyclopædia Britannica ...
s against open communication about death among physicians or the wider population, discomfort with unfamiliar medical techniques and professional callousness towards the terminally ill. Nevertheless, the movement has spread throughout the world.
Africa
A hospice opened in 1980 in Harare
Harare (; formerly Salisbury ) is the capital and most populous city of Zimbabwe. The city proper has an area of 940 km2 (371 mi2) and a population of 2.12 million in the 2012 census and an estimated 3.12 million in its metropolitan ...
(Salisbury), Zimbabwe
Zimbabwe (), officially the Republic of Zimbabwe, is a landlocked country located in Southeast Africa, between the Zambezi and Limpopo Rivers, bordered by South Africa to the south, Botswana to the south-west, Zambia to the north, and Mozam ...
, the first in Sub-Saharan Africa
Sub-Saharan Africa is, geographically, the area and regions of the continent of Africa that lies south of the Sahara. These include West Africa, East Africa, Central Africa, and Southern Africa. Geopolitically, in addition to the List of sov ...
. In spite of skepticism in the medical community,[ the hospice movement spread, and in 1987 the Hospice Palliative Care Association of South Africa formed.] In 1990, Nairobi Hospice opened in Nairobi
Nairobi ( ) is the capital and largest city of Kenya. The name is derived from the Maasai phrase ''Enkare Nairobi'', which translates to "place of cool waters", a reference to the Nairobi River which flows through the city. The city proper ha ...
, Kenya
)
, national_anthem = "Ee Mungu Nguvu Yetu"()
, image_map =
, map_caption =
, image_map2 =
, capital = Nairobi
, coordinates =
, largest_city = Nairobi
, ...
.[ As of 2006, ]Kenya
)
, national_anthem = "Ee Mungu Nguvu Yetu"()
, image_map =
, map_caption =
, image_map2 =
, capital = Nairobi
, coordinates =
, largest_city = Nairobi
, ...
, South Africa
South Africa, officially the Republic of South Africa (RSA), is the southernmost country in Africa. It is bounded to the south by of coastline that stretch along the South Atlantic and Indian Oceans; to the north by the neighbouring countri ...
and Uganda
}), is a landlocked country in East Africa
East Africa, Eastern Africa, or East of Africa, is the eastern subregion of the African continent. In the United Nations Statistics Division scheme of geographic regions, 10-11-(16*) territor ...
were among 35 countries offering widespread, well-integrated palliative care.[ Programs adopted the United Kingdom model, but emphasise home-based assistance.
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 and work with the Ministry of Health to help develop palliative care guidelines for cervical cancer.][ The ]Government of Kenya
, image =
, caption = Coat of arms of Kenya
, date = 1963
, jurisdiction = Republic of Kenya
, url = http://www.mygov.go.ke/
, legislature = Parliament of Kenya
, meeting_place = ...
supported hospice by donating land to Nairobi Hospice and providing funding to several of its nurses.[
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).][ Over half of hospice patients in South Africa in the 2003–2004 year were diagnosed with ]AIDS
Human immunodeficiency virus infection and acquired immunodeficiency syndrome (HIV/AIDS) is a spectrum of conditions caused by infection with the human immunodeficiency virus (HIV), a retrovirus. Following initial infection an individual m ...
, with the majority of the remaining diagnosed with cancer
Cancer is a group of diseases involving abnormal cell growth with the potential to invade or spread to other parts of the body. These contrast with benign tumors, which do not spread. Possible signs and symptoms include a lump, abnormal b ...
.[ 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
The United States President's Emergency Plan For AIDS Relief (PEPFAR) is a United States governmental initiative to address the global HIV/AIDS epidemic and help save the lives of those suffering from the disease. Launched by U.S. President Geor ...
.[
]Hospice Africa Uganda
Anne Merriman, MBE, MCommH, FRCPI, FRCP (born 1935 in Liverpool, England) is a British doctor, known for her pioneering work and influential research into palliative care in developing countries in Africa. She has campaigned to make affordable ...
(HAU), founded by Anne Merriman, began offering services in 1993 in a two-bedroom house loaned for the purpose by Nsambya Hospital
St. Francis Hospital Nsambya, commonly known as Nsambya Hospital, is a hospital in Kampala, the capital of Uganda and the largest city in that country.
Location
Nsambya Hospital is located 2.7Km from Kampala Central Business District off Ggaba ...
.[ HAU has since expanded to a base of operations at ]Makindye
Makindye is a hill in Kampala, Uganda's largest city and capital. The name also refers to the neighborhood that sits on that hill. Makindye is also the seat of Makindye Division, one of the five administrative zones of the city of Kampala.
Loca ...
, Kampala
Kampala (, ) is the capital and largest city of Uganda. The city proper has a population of 1,680,000 and is divided into the five political divisions of Kampala Central Division, Kawempe Division, Makindye Division, Nakawa Division, and Ruba ...
, with hospice services offered at roadside clinics by Mobile Hospice Mbarara
Mbarara City is a city in the Western Region of Uganda and the second largest city in Uganda after Kampala. The city is divided into 6 boroughs of Kakoba Division, Kamukuzi Division, Nyamitanga Division, Biharwe Division, Kakiika Division, Nyakay ...
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
Makerere University, Kampala (; Mak) is Uganda's largest and oldest institution of higher learning, first established as a technical school in 1922. It became an independent national university in 1970. Today, Makerere University is composed of ni ...
offers a distance diploma in palliative care.[Wright et al, 15.] The government of Uganda published a strategic plan for palliative care that permits nurses and clinical officers from HAU to prescribe morphine
Morphine is a strong opiate that is found naturally in opium, a dark brown resin in poppies (''Papaver somniferum''). It is mainly used as a analgesic, pain medication, and is also commonly used recreational drug, recreationally, or to make ...
.
North America
Canada
Canadian physician Balfour Mount
Balfour M. Mount, (born 14 April 1939) is a Canadian physician, surgeon, and academic. He is considered the father of palliative care in North America.
Born in Ottawa, Ontario, he received his medical degree from Queen's University in 1963 and ...
, who first coined the term "palliative care", was a pioneer in medical research and in the Canadian hospice movement, which focused primarily on palliative care in a hospital setting. Having read Kübler-Ross, Mount studied the experiences of the terminally ill at Royal Victoria Hospital, Montreal
The Royal Victoria Hospital (RVH) (french: Hôpital Royal Victoria), colloquially known as the "Royal Vic" or "The Vic", is a hospital in Montreal, Quebec, Canada. It forms the biggest base hospital of the McGill University Health Centre (MUHC), ...
; the "abysmal inadequacy", as he termed it, that he found prompted him to spend a week with Cicely Saunders at St. Christopher's. 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.[ 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
A nursing home is a facility for the residential care of elderly or disabled people. Nursing homes may also be referred to as skilled nursing facility (SNF) or long-term care facilities. Often, these terms have slightly different meanings to in ...
s.[ Hundreds of palliative care programs then followed throughout Canada through the 1970s and 1980s.
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.] 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.[ Only four of ten identified palliative care as a core health service.][ 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.][
]
United States
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 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
Medicaid in the United States is a federal and state program that helps with healthcare costs for some people with limited income and resources. Medicaid also offers benefits not normally covered by Medicare, including nursing home care and pers ...
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.
Florence Wald, Dean of the Yale School of Nursing, founded one of the first hospices in the United States in New Haven, Connecticut
New Haven is a city in the U.S. state of Connecticut. It is located on New Haven Harbor on the northern shore of Long Island Sound in New Haven County, Connecticut and is part of the New York City metropolitan area. With a population of 134,02 ...
, in 1974.[Long 2019](_blank)
/ref> The first hospital-based palliative care consultation service developed in the US was the Wayne State University School of Medicine
The Wayne State University School of Medicine (WSUSOM) is the medical school of Wayne State University, a public research university in Detroit, Michigan. It enrolls more than 1,500 students in undergraduate medical education, master's degree, P ...
in 1985 at Detroit Receiving Hospital
Detroit Receiving Hospital in Detroit, Michigan, is the state's first Level I Trauma Center. Receiving's emergency department treats more than 105,000 patients annually, and nearly 60% of Michigan's emergency physicians are trained at Receiving. ...
. The first US-based palliative medicine and hospice service program was started in 1987 by Declan Walsh at the Cleveland Clinic
Cleveland Clinic is a nonprofit American academic medical center based in Cleveland, Ohio. Owned and operated by the Cleveland Clinic Foundation, an Ohio nonprofit corporation established in 1921, it runs a 170-acre (69 ha) campus in Cleveland, ...
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
The World Health Organization (WHO) is a specialized agency of the United Nations responsible for international public health. The WHO Constitution states its main objective as "the attainment by all peoples of the highest possible level of h ...
international demonstration project and accredited by the European Society of Medical Oncology as an Integrated Center of Oncology and Palliative Care. Other programs followed; some notable ones are: 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).
In 1982, Congress initiated the creation of the Medicare Hospice Benefit, which became permanent in 1986. In 1993, President Clinton installed hospice as a guaranteed benefit and an accepted component of health care provisions. , 1.49 million Medicare beneficiaries were enrolled in hospice care for one day or more, which is a 4.5% increase from the previous year. Since 2014, Asian- and Hispanic-identifying beneficiaries of hospice care increased by 32% and 21% respectively.
United Kingdom
The first hospice to open in the United Kingdom was the Trinity Hospice
Royal Trinity Hospice is the oldest hospice in the United Kingdom, founded in 1891 by a member of the Hoare banking family. It is located in Clapham Common, London, England, and provides specialist palliative care. In 2019 Royal Trinity Hos ...
in Clapham
Clapham () is a suburb in south west London, England, lying mostly within the London Borough of Lambeth, but with some areas (most notably Clapham Common) extending into the neighbouring London Borough of Wandsworth.
History
Early history
T ...
south London in 1891, on the initiative of the Hoare banking family. More than half a century later, a hospice movement developed after Dame Cicely Saunders
Dame Cicely Mary Strode Saunders (22 June 1918 – 14 July 2005) was an English nurse, social worker, physician and writer. She is noted for her work in terminal care research and her role in the birth of the hospice movement, emphasising the i ...
opened St Christopher's Hospice
St. Christopher's Hospice is a hospice in south London, England, established in 1967 by Cicely Saunders, whose work is considered the basis of modern hospice philosophy.
Legacy
Among the first staff at St. Christopher's was Florence Wald, who t ...
in 1967, widely considered the first modern hospice. According to the UK's Help the Hospices, in 2011 UK hospice services consisted of 220 inpatient units for adults with 3,175 beds, 42 inpatient units for children with 334 beds, 288 home care services, 127 hospice at-home services, 272 day care services, and 343 hospital support services. These services together helped over 250,000 patients in 2003 and 2004. Funding varies from 100% funding by the National Health Service
The National Health Service (NHS) is the umbrella term for the publicly funded healthcare systems of the United Kingdom (UK). Since 1948, they have been funded out of general taxation. There are three systems which are referred to using the " ...
to almost 100% funding 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."
As of 2006, about 4% of all deaths in England and Wales occurred in a hospice setting (about 20,000 patients); a further number of patients spent time in a hospice, or were helped by hospice-based support services, but died elsewhere.
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.
Egypt
According to the ''Global Atlas of Palliative Care at the End of Life'', 78% of adults and 98% of children in need of palliative care at the end of life live in low and middle-income countries. Nevertheless, hospice and palliative care provision in Egypt
Egypt ( ar, مصر , ), officially the Arab Republic of Egypt, is a transcontinental country spanning the northeast corner of Africa and southwest corner of Asia via a land bridge formed by the Sinai Peninsula. It is bordered by the Mediter ...
is limited and sparsely available relative to the size of the population. Some of the obstacles to the development of these services have included the lack of public awareness, restricted availability of opioids, and the absence of a national hospice and palliative care development plan. Key efforts made in the past 10 years have been initiated by individuals allowing for the emergence of the first non-governmental organisation providing primarily home-based hospice services in 2010, the opening of one palliative medicine unit at Cairo University
Cairo University ( ar, جامعة القاهرة, Jāmi‘a al-Qāhira), also known as the Egyptian University from 1908 to 1940, and King Fuad I University and Fu'ād al-Awwal University from 1940 to 1952, is Egypt's premier public university ...
in 2008 and an inpatient palliative care unit in Alexandria
Alexandria ( or ; ar, ٱلْإِسْكَنْدَرِيَّةُ ; grc-gre, Αλεξάνδρεια, Alexándria) is the second largest city in Egypt, and the largest city on the Mediterranean coast. Founded in by Alexander the Great, Alexandria ...
.
Models of both home-based care and stand-alone hospices exist globally, but with the cultural and societal preferences of patients and their families to die at home in Egypt there is an inclination to focus on the development of home-based hospice and palliative care services.
Israel
The first hospice unit in Israel
Israel (; he, יִשְׂרָאֵל, ; ar, إِسْرَائِيل, ), officially the State of Israel ( he, מְדִינַת יִשְׂרָאֵל, label=none, translit=Medīnat Yīsrāʾēl; ), is a country in Western Asia. It is situated ...
opened in 1983. More than two decades later, a 2016 study found that 46% of the general Israeli public had never heard of it, despite the 70% of physicians who reported that they had the skill to treat patients according to palliative principles.
Other nations
Hospice Care in Australia predated the opening of St Christophers in London by 79 years. The Irish Sisters of Charity opened hospices in Sydney (1889) and in Melbourne (1938). The first hospice in New Zealand opened in 1979. Hospice care entered Poland
Poland, officially the Republic of Poland, is a country in Central Europe. It is divided into 16 administrative provinces called voivodeships, covering an area of . Poland has a population of over 38 million and is the fifth-most populous ...
in the mid-1970s. Japan
Japan ( ja, 日本, or , and formally , ''Nihonkoku'') is an island country in East Asia. It is situated in the northwest Pacific Ocean, and is bordered on the west by the Sea of Japan, while extending from the Sea of Okhotsk in the north ...
opened its first hospice in 1981, officially hosting 160 by July 2006. India
India, officially the Republic of India (Hindi: ), is a country in South Asia. It is the seventh-largest country by area, the second-most populous country, and the most populous democracy in the world. Bounded by the Indian Ocean on the so ...
's first hospice, Shanti Avedna Ashram, opened in Bombay
Mumbai (, ; also known as Bombay — the official name until 1995) is the capital city of the Indian state of Maharashtra and the ''de facto'' financial centre of India. According to the United Nations, as of 2018, Mumbai is the second- ...
in 1986. The first hospice in the Nordics opened in Tampere, Finland
Tampere ( , , ; sv, Tammerfors, ) is a city in the Pirkanmaa Regions of Finland, region, located in the western part of Finland. Tampere is the most populous inland city in the Nordic countries. It has a population of 244,029; the Tampere u ...
in 1988. The first modern free-standing hospice in China
China, officially the People's Republic of China (PRC), is a country in East Asia. It is the world's most populous country, with a population exceeding 1.4 billion, slightly ahead of India. China spans the equivalent of five time zones and ...
opened in Shanghai
Shanghai (; , , Standard Mandarin pronunciation: ) is one of the four direct-administered municipalities of the People's Republic of China (PRC). The city is located on the southern estuary of the Yangtze River, with the Huangpu River flow ...
in 1988. The first hospice unit in Taiwan, where the term for hospice translates as "peaceful care", opened in 1990. The first free-standing hospice in Hong Kong
Hong Kong ( (US) or (UK); , ), officially the Hong Kong Special Administrative Region of the People's Republic of China ( abbr. Hong Kong SAR or HKSAR), is a city and special administrative region of China on the eastern Pearl River Delt ...
, where the term for hospice translates as "well-ending service", opened in 1992.
The International Hospice Institute was founded in 1984.
World Hospice and Palliative Care Day
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.About
World Hospice and Palliative Care Day (visited 24. July 2014
Hospice home health
Nurses that work in hospice in the home healthcare setting aim to relieve pain and holistically support their patient and the patient's family. Patients can receive hospice care when they have less than six 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 the best outcome. Medicare covers all costs of hospice treatment.
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.
See also
*Children's hospice
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.
Services ...
*Deathbed phenomena
Deathbed phenomena refers to a range of experiences reported by people who are dying. There are many examples of deathbed phenomena in both non-fiction and fictional literature, which suggests that these occurrences have been noted by cultures a ...
*Death midwife
A death midwife, or death doula, is a person who assists in the dying process, much like a midwife or doula does with the birthing process. It is often a community based role, aiming to help families cope with death through recognizing it as a nat ...
* Hospice chaplain
*Life support
Life support comprises the treatments and techniques performed in an emergency in order to support life after the failure of one or more vital organs. Healthcare providers and emergency medical technicians are generally certified to perform basic ...
*Opioid
Opioids are substances that act on opioid receptors to produce morphine-like effects. Medically they are primarily used for pain relief, including anesthesia. Other medical uses include suppression of diarrhea, replacement therapy for opioid us ...
*Pain management
Pain management is an aspect of medicine and health care involving relief of pain (pain relief, analgesia, pain control) in various dimensions, from acute and simple to chronic and challenging. Most physicians and other health professionals pr ...
*Robert Twycross
Robert Twycross (born 29 January 1941) is a retired British physician and writer. He was a pioneer of the hospice movement during the 1970s, when he helped palliative care gain recognition as an accepted field of modern medicine.
Education an ...
*Worldwide Hospice and Palliative Care Alliance
The Worldwide Hospice Palliative Care Alliance or WHPCA (formerly known as the Worldwide Palliative Care Alliance or WPCA) is an international non-governmental organization based in the United Kingdom. In official relations with the World Health ...
References
Further reading
*
*Szeloch Henryk, Hospice as a place of pastoral and palliative care over a badly ill person, Wyd. UKSW Warszawa 2012,
*Worpole, Ken, Modern Hospice Design: the architecture of palliative care, Routledge,
External links
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Caregiving
Types of health care facilities