Hospice care is a type of care and philosophy of care that focuses on the palliation of a chronically ill, terminally ill or seriously ill patient's pain and symptoms, and attending to their emotional and spiritual needs. In Western society, the concept of hospice has been evolving in Europe since the 11th century. Then, and for centuries thereafter in Roman Catholic tradition, hospices were places of hospitality for the sick, wounded, or dying, as well as those for travelers and pilgrims. The modern concept of hospice includes palliative care for the incurably ill given in such institutions as hospitals or nursing homes, but also care provided to those who would rather spend their last months and days of life in their own homes. The first modern hospice care was created by Cicely Saunders in 1967.
In the United States the term is largely defined by the practices of the Medicare system and other health insurance providers, which make hospice care available, either in an inpatient facility or at the patient's home, to patients with a terminal prognosis who are medically certified at hospice onset to have less than six months to live. According to the NHPCO [National Hospice and Palliative Care Organization] 2012 report on facts and figures of Hospice care, 66.4% received care in their place of residence and 26.1% in a Hospice inpatient facility. In the late 1970s the U.S. government began to view hospice care as a humane care option for the terminally ill. In 1982 Congress initiated the creation of the Medicare Hospice Benefit which became permanent in 1986. In 1993, President Clinton installed hospice as a guaranteed benefit and an accepted component of health care provisions. Outside the United States, the term hospice tends to be primarily associated with the particular buildings or institutions that specialize in such care (although so-called "hospice at home" services may also be available). Outside the United States such institutions may similarly provide care mostly in an end-of-life setting, but they may also be available for patients with other specific palliative care needs. Hospice care also involves assistance for patients’ families to help them cope with what is happening and provide care and support to keep the patient at home. Although the movement has met with some resistance, hospice has rapidly expanded through the United Kingdom, the United States and elsewhere.
Etymologically, the word "hospice" derives from the Latin hospes, a word which served double duty in referring both to guests and hosts. Historians believe the first hospices originated in the 11th century, around 1065. The rise of the Crusading movement in the 1090s saw the incurably ill permitted into places dedicated to treatment by Crusaders. In the early 14th century, the order of the Knights Hospitaller of St. John of Jerusalem opened the first hospice in Rhodes, meant to provide refuge for travelers and care for the ill and dying. Hospices flourished in the Middle Ages, but languished as religious orders became dispersed. They were revived in the 17th century in France by the Daughters of Charity of Saint Vincent de Paul. 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 also developed in other areas. In the United Kingdom, attention was drawn to the needs of the terminally ill in the middle of the 19th 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. 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 saw the opening of St. Rose's Hospice by the Servants for Relief of Incurable Cancer, who soon expanded with six locations in other cities.
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 became very busy, with as many as 20,000 people—primarily suffering tuberculosis and cancer—coming to the hospice to die 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 and New South Wales following in the 1930s. In 1905, they opened St Joseph's Hospice in London. There in the 1950s Cicely Saunders developed many of the foundational principles of modern hospice care. Over the years these centers became more prompt and in the 1970s till now this is where they place people to live out their final day (DeSpelder, 2014).
Rise of the modern hospice movement
Dame Cicely Saunders was a British registered nurse whose chronic health problems had 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. 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. Saunders entered medical school while continuing her volunteer work at St. Joseph's. When she achieved 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 the physical aspects. She experimented with a wide range of opioids for controlling physical pain but included also the needs of the patient's family.
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. 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, establishing Hospice, Inc. in 1971. Another early hospice program in the United States, Alive Hospice, was founded in Nashville, Tennessee, on November 14, 1975. By 1977 the National Hospice Organization had been formed, and by 1979, a president, Ann G. Blues, had been elected at the national meeting in Washington DC 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 Elisabeth Kübler Ross also began to consider the 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, was influential on how the medical profession responded to the terminally ill, and along with Saunders and other thanatology pioneers helped to focus attention on the types of care available to them.
Hospice has faced resistance springing from various factors, including professional or cultural taboos 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, with national differences in focus and application, spread throughout the world.
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). The IAHPC, with a board of directors as of 2008 from such diverse countries as Scotland, Argentina, China and Uganda, works from the philosophy that each country should develop a palliative care model based on its own resources and conditions, evaluating hospice experiences in other countries but adapting to their own needs. Dr. Derek Doyle, who was a founding member of IAHPC, told the British Medical Journal in 2003 that through her work the Philippine-born 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 a number of countries around the world, including Australia, Canada, Hungary, Italy, Japan, Moldova, Norway, Poland, Romania, Spain, Switzerland, 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, though these might be localized or very limited. As of 2009, there were an estimated 10,000 programs internationally intended to provide 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 and a hospice nurse who makes periodic stops. Hospice can be administered in a nursing home, hospice building, or sometimes a hospital; however, it is most commonly practiced in the home. In order to be considered for hospice care, one has to be terminally ill or expected to die within six months.
A hospice was opened in 1980 in Harare (Salisbury, at the time), Zimbabwe, the first in Sub-Saharan Africa. 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, Kenya. As of 2006, Kenya, South Africa and Uganda were among the 35 countries of the world offering widespread, well-integrated palliative care. Programs there are based on the United Kingdom model, but focus less on in-patient care, emphasizing home-based assistance.
Since the foundation of hospice in Kenya in the early 1990s, palliative care has spread through the country. Representatives of Nairobi Hospice sit on the committee to develop a Health Sector Strategic Plan for the Ministry of Health and are working with the Ministry of Health to help develop specific palliative care guidelines for cervical cancer. The Government of Kenya has 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, with the majority of the remaining having been diagnosed with cancer. Palliative care in South Africa 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.
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. HAU has since expanded to a base of operations at Makindye, Kampala, with hospice services also offered at roadside clinics by Mobile Hospice Mbarara since January 1998. That same year saw the opening of Little Hospice Hoima in June. Hospice care in Uganda is supported by community volunteers and professionals, as Makerere University offers a distance diploma in palliative care. The government of Uganda has a strategic plan for palliative care and permits nurses and clinical officers from HAU to prescribe morphine.
Canadian physician Balfour Mount, who first coined the term "palliative care", was a pioneer in the Canadian hospice movement, which focuses primarily on palliative care in a hospital setting. Having read the work of Kubler-Ross, Mount set out to study 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. Inspired, Mount decided to adapt Saunders' model for Canada. Given differences in medical funding in Canada, he determined that a hospital-based approach would be more affordable, creating a specialized ward at Royal Victoria in January, 1975. For Canada, whose official languages include English and French, Mount felt the term "palliative care ward" would be more appropriate, 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.
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 available services having decreased with reduced government funding. 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 care provided at home. Only four of the 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; there were only 175 specialized palliative care physicians in all of Canada.
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 services from hospice. 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 also covered by Medicaid and most private insurance plans. Most hospice care is delivered at home. Hospice care is also available to people in home-like hospice residences, nursing homes, assisted living facilities, veterans' facilities, hospitals, and prisons. The first hospice in the US was the Connecticut Hospice, located in Branford, Connecticut.
The first United States hospital-based palliative care programs began in the late 1980s by committed volunteers across the country. The first hospital-based palliative care consult service developed in the United States was the Wayne State University School of Medicine in 1985 at Detroit Receiving Hospital. The first United States-based palliative medicine and hospice service program was started in 1987 by Declan Walsh, MD 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 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). By 1995, hospices were a $2.8 billion industry in the United States, with $1.9 billion from Medicare alone funding patients in 1,857 hospice programs with Medicare certification. In that year, 72% of hospice providers were non-profit. By 1998, there were 3,200 hospices either in operation or under development throughout the United States and Puerto Rico, according to the NHPCO. According to 2007's Last Rights: Rescuing the End of Life from the Medical System, hospice sites are expanding at a national rate of about 3.5% per year. As of 2008, approximately 900,000 people in the United States were using hospice every year, with more than one-third of dying Americans using the service.
Hospice plays an important role in reducing Medicare costs. Over the past 20–30 years 27-30% of Medicare's total budget was spent on individuals in their last year of life. Hospice care reduces ER visits and inpatient hospitalization which are costly and emotionally traumatizing for both the patient and their loved ones.
Hospice care may involve not treating illnesses. Patients and family members should understand the care or lack of care that is planned. If one has pneumonia, it may (or may not) be treated. If not treated, this might actually increase suffering. If the illness of the patient is not related to the terminal illness covered under the clinical determination of eligibility, the patient may seek standard treatment to address the cause of the suffering if they request such treatment. Any Medicare services received by a hospice patient are covered under original Medicare including those hospice patients who have a Medicare Advantage plan and also services provided by a primary care physician for unrelated hospice treatments.
The hospice movement has grown dramatically in the United Kingdom since Dame Cicely Saunders opened St Christopher's Hospice 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 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.
Hospice Care in Australia predates the opening of St Christophers in London by 79 years. The establishment by the Irish Sisters of Charity of hospices in Sydney (1889) and in Melbourne (1938). The first hospice in New Zealand opened in 1979. Hospice care entered Poland in the middle of the 1970s. Japan opened its first hospice in 1981, officially hosting 160 by July 2006. The first hospice unit in Israel was opened in 1983. India's first hospice, Shanti Avedna Ashram, opened in Bombay in 1986. First hospice in the Nordics has been operating in Tampere, Finland since 1988. The first modern free-standing hospice in China opened in Shanghai in 1988. The first hospice unit in Taiwan, where the term for hospice translates "peaceful care", was opened in 1990. The first free-standing hospice in Hong Kong, where the term for hospice translates "well-ending service", opened in 1992. The first hospice in Russia was established in 1997.
World Hospice and Palliative Care Day
Since 2006 the World Hospice and Palliative Care Day is organised by a committee of 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.
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