Hospice

Last updated
A Hospice House in Missouri De Greeff Hospice House.jpg
A Hospice House in Missouri

Hospice care is a type of health care that focuses on the palliation of a 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.

Contents

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 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. [1]

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. [2]

The English word hospice is a borrowing from French. In France however, the word hospice refers more generally to an institution where sick and destitute people are cared for, and does not necessarily have a palliative connotation.

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. [3] [4] Hospices typically do not perform treatments that are meant to diagnose or cure an illness but also do not include treatments that hasten death. [1] Instead, hospices focus on palliative care to relieve pain and symptoms. [4]

This philosophy affects how hospice staff treat people and their families. Compared to general healthcare providers, hospice professionals take a different approach to talking to people and their families. [5] They are more likely to make predictions or express uncertainty around future events (e.g., "He might die this week" or "I think she might live longer") than to issue orders or prescribe actions (e.g., "She needs a nurse" or "He can't go home"). [5]

History overview

Early development

The word hospice derives from Latin hospitum, meaning hospitality or place of rest and protection for the ill and weary. [1] 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. [6] The rise of the European Crusading movement in the 1090s placed the incurably ill into places dedicated to treatment. [7] [8] In the early 14th century, the order of the Knights Hospitaller of St. John of Jerusalem opened the first hospice in Rhodes. [9] Hospices flourished in the Middle Ages, but languished as religious orders became dispersed. [7] They were revived in the 17th century in France by the Daughters of Charity of Saint Vincent de Paul. [9] 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. [10] Six other hospices followed before 1900. [10]

Meanwhile, hospices 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. [11] 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. [11] Four more hospices were established in London by 1905, [11] 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 of East Grinstead. [12] 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). [13] 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. [10]

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. [10] It served as many as 20,000 people—primarily with tuberculosis and cancer—dying there between 1845 and 1945. [10] 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. [14] In 1905, they opened St Joseph's Hospice in London. [9] [15]

Hospice movement

St Christopher's Hospice in 2005 St. Christopher's Hospice.jpg
St Christopher's Hospice in 2005

In Western society, the concept of hospice began evolving in Europe in the 11th century. In Roman Catholic 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 hospitals and nursing homes, along with at-home care. The first modern hospice care was created by Dame Cicely Saunders in 1967. 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. [16] 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. [16] 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. [16]

Saunders emphasized focusing on the patient rather than the disease and introduced the notion of 'total pain', [17] which included psychological and spiritual as well as physical discomfort. She experimented with opioids 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. [9]

She disseminated her philosophy internationally in a series of tours of the United States that began in 1963. [18] [19] 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. [9] [20] Another early hospice program in the United States, Alive Hospice, was founded in Nashville, Tennessee, on November 14, 1975. [21] 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. [22] 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. [23] Her 1969 best-seller, On Death and Dying , influenced the medical profession's response to the terminally ill. [23] Dr. Balfour Mount introduced the concept of palliative care to Canada in the early 1970s and established the first hospice program at the Royal Victoria Hospital in Montreal, laying the foundation for modern palliative care practices. Saunders and other thanatology pioneers helped to focus attention on the types of care available to them. [18]


In 1984, 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). [24] [25] The IAHPC follows the philosophy that each country should develop a palliative care model based on its own resources and conditions. [26] IAHPC founding member 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." [25] 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. [27]

Hospice Saint Vincent de Paul, Jerusalem Mamilla StVincent.jpg
Hospice Saint Vincent de Paul, Jerusalem

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. [28] As of 2009, an estimated 10,000 programs internationally provided palliative care, although the term hospice is not always employed to describe such services. [29]

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. [30] Hospice care targets the terminally ill who are expected to die within six months.

Hospice was the subject of the Netflix 2018 Academy Award–nominated [31] short documentary End Game , [32] 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. [33]

In 2016, an open letter [34] to the singer David Bowie written by a palliative care doctor, Professor Mark Taubert, talked about the importance of good palliative care and hospice provision, especially being able to express wishes about the last months of life, and good education about end of life care generally. The letter went viral after David Bowie's son Duncan Jones shared it. [35] The letter was subsequently read out by the actor Benedict Cumberbatch and the singer Jarvis Cocker at public events. [36] [37]

National variations

Hospice faced resistance from cultural and professional taboos against open communication about death among healthcare providers and the wider population, discomfort with unfamiliar medical techniques and perceived professional callousness towards the terminally ill. [38] Nevertheless, the movement has spread throughout the world. [39]

Africa

A hospice opened in 1980 in Harare (Salisbury), Zimbabwe, the first in Sub-Saharan Africa. [40] In spite of skepticism in the medical community, [38] the hospice movement spread, and in 1987 the Hospice Palliative Care Association of South Africa formed. [41] In 1990, Nairobi Hospice opened in Nairobi, Kenya. [41] As of 2006, Kenya, South Africa and Uganda were among 35 countries offering widespread, well-integrated palliative care. [41] Programs adopted the United Kingdom model, but emphasise home-based assistance. [42]

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. [41] The Government of Kenya supported hospice by donating land to Nairobi Hospice and providing funding to several of its nurses. [41]

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). [41] 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. [41] 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. [41]

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. [41] 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. [43] The government of Uganda published a strategic plan for palliative care that permits nurses and clinical officers from HAU to prescribe morphine.

North America

Canada

Canadian physician Balfour Mount, 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. [44] [45] After meeting Kübler-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 Cicely Saunders at St. Christopher's. [46] 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. [45] [46] 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. [45] [46] Hundreds of palliative care programs then followed throughout Canada through the 1970s and 1980s. [47]

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. [48] 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. [48] Only four of ten identified palliative care as a core health service. [48] 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. [48]

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 and most private insurance plans. [49] 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, in 1974. [4] 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. [50] 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. [51] 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; 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. [52] As of 2017, 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. [53] From 2014 to 2019, Asian- and Hispanic-identifying beneficiaries of hospice care increased by 32% and 21% respectively. [53]

United Kingdom

St Thomas Hospice, Canterbury Canterbury 002 St Thomas Hospice.jpg
St Thomas Hospice, Canterbury

The first hospice to open in the United Kingdom was the Trinity Hospice in Clapham south London in 1891, on the initiative of the Hoare banking family. [54] 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. 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. [55] 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." [56]

As of 2006, about 4% of all deaths in England and Wales occurred in a hospice setting (about 20,000 patients); [57] 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. [58]

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 is limited and sparsely available relative to the size of the population. [59] 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. [60] 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, [61] the opening of one palliative medicine unit at Cairo University in 2008 and an inpatient palliative care unit in Alexandria. [60]

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. [62]

Israel

The first hospice unit in Israel opened in 1983. [63] 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. [64]

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. [65] Hospice care entered Poland in the mid-1970s. [66] Japan opened its first hospice in 1981, officially hosting 160 by July 2006. [67] India's first hospice, Shanti Avedna Ashram, opened in Bombay in 1986. [68] [69] [70] [71] The first hospice in the Nordics opened in Tampere, Finland in 1988. [72] The first modern free-standing hospice in China opened in Shanghai in 1988. [73] The first hospice unit in Taiwan, where the term for hospice translates as "peaceful care", opened in 1990. [38] [74] The first free-standing hospice in Hong Kong, where the term for hospice translates as "well-ending service", opened in 1992. [38] [75]

The International Hospice Institute was founded in 1984. [4]

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. [76]

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. [77]

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. [77]

See also

Related Research Articles

Dying is the final stage of life which will eventually lead to death. Diagnosing dying is a complex process of clinical decision-making, and most practice checklists facilitating this diagnosis are based on cancer diagnoses.

Palliative care is an interdisciplinary medical caregiving approach aimed at optimizing quality of life and mitigating suffering among people with serious, complex, and often terminal illnesses. Within the published literature, many definitions of palliative care exist. The World Health Organization (WHO) describes palliative care as "an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain, illnesses including other problems whether physical, psychosocial, and spiritual". In the past, palliative care was a disease specific approach, but today the WHO takes a broader patient-centered approach that suggests that the principles of palliative care should be applied as early as possible to any chronic and ultimately fatal illness. This shift was important because if a disease-oriented approach is followed, the needs and preferences of the patient are not fully met and aspects of care, such as pain, quality of life, and social support, as well as spiritual and emotional needs, fail to be addressed. Rather, a patient-centered model prioritizes relief of suffering and tailors care to increase the quality of life for terminally ill patients.

In medicine, specifically in end-of-life care, palliative sedation is the palliative practice of relieving distress in a terminally ill person in the last hours or days of a dying person's life, usually by means of a continuous intravenous or subcutaneous infusion of a sedative drug, or by means of a specialized catheter designed to provide comfortable and discreet administration of ongoing medications via the rectal route.

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, advanced heart disease, and for HIV/AIDS, or long COVID in bad cases, rather than for injury. In popular use, it indicates a disease that will progress until death with near absolute certainty, regardless of treatment. A patient who has such an illness may be referred to as a terminal patient, terminally ill or simply as being terminal. There is no standardized life expectancy for a patient to be considered terminal, although it is generally months or less. Life expectancy for terminal patients is a rough estimate given by the physician based on previous data and does not always reflect true longevity. An illness which is lifelong but not fatal is a chronic condition.

<span class="mw-page-title-main">Cicely Saunders</span> English nurse, social worker, physician and writer

Dame Cicely Mary Strode Saunders 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 importance of palliative care in modern medicine, and opposing the legalisation of voluntary euthanasia.

End-of-life care (EOLC) is health care provided in the time leading up to a person's death. End-of-life care can be provided in the hours, days, or months before a person dies and encompasses care and support for a person's mental and emotional needs, physical comfort, spiritual needs, and practical tasks.

The Liverpool Care Pathway for the Dying Patient (LCP) was a care pathway in the United Kingdom covering palliative care options for patients in the final days or hours of life. It was developed to help doctors and nurses provide quality end-of-life care, to transfer quality end-of-life care from the hospice to hospital setting. The LCP is no longer in routine use after public concerns regarding its nature. Alternative methodologies for Advance care planning are now in place to ensure patients are able to have dignity in their final hours of life. Hospitals were also provided cash incentives to achieve targets for the number of patients placed on the LCP.

<span class="mw-page-title-main">Florence Wald</span> American nurse (1917–2008)

Florence Wald was an American nurse, former Dean of Yale School of Nursing, and largely credited as "the mother of the American hospice movement". She led the founding of Connecticut Hospice, the first hospice program in the United States. Late in life, Wald became interested in the provision of hospice care within prisons. In 1998, Wald was inducted into the National Women's Hall of Fame.

<span class="mw-page-title-main">Hospice care in the United States</span>

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 hospice as a place to treat the incurably ill has been evolving since the 11th century. Hospice care was introduced to the United States in the 1970s in response to the work of Cicely Saunders in the United Kingdom. This part of health care has expanded as people face a variety of issues with terminal illness. In the United States, it is distinguished by extensive use of volunteers and a greater emphasis on the patient's psychological needs in coming to terms with dying.

<span class="mw-page-title-main">Father Eugeniusz Dutkiewicz SAC Hospice</span>

Father Eugeniusz Dutkiewicz SAC Hospice in Gdańsk, a charitable organization, founded by the Pallottine priest E. Dutkiewicz in 1983, provides palliative care for the terminally ill patients.

Diane E. Meier, an American geriatrician and palliative care specialist. In 1999, Dr. Meier founded the Center to Advance Palliative Care, a national organization devoted to increasing access to quality health care in the United States for people living with serious illness. She continues to serve as CAPC's Director Emerita and Strategic Medical Advisor. Meier is also Vice-Chair for Public Policy, Professor of Geriatrics and Palliative Medicine and Catherine Gaisman Professor of Medical Ethics at the Icahn School of Medicine at Mount Sinai Hospital in New York City. Meier was founder and Director of the Hertzberg Palliative Care Institute at the Icahn School of Medicine in New York City from 1997 to 2011.

Terminal dehydration is dehydration to the point of death. Some scholars make a distinction between "terminal dehydration" and "termination by dehydration". Courts in the United States generally do not recognize prisoners as having a right to die by voluntary dehydration, since they view it as suicide.

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

<span class="mw-page-title-main">M. R. Rajagopal</span> Indian palliative care physician (born 1947)

M. R. Rajagopal is an Indian palliative care physician (anesthesiologist) and professor referred to as the 'father of palliative care in India' in honour of his significant contribution to the palliative care scene in India.

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, recognizing it as a natural and important part of life. The role can supplement and go beyond hospice. These Specialist perform a large variety of services, including but not limited to creating death plans, and providing spiritual, psychological, and social support before and just after death. Their role can also include more logistical activities, helping with services, planning funerals and memorial services, and guiding mourners in their rights and responsibilities.

Margaret Ruth McCorkle FAAN, FAPOS was an American nurse, oncology researcher, and educator. She was the Florence Schorske Wald Professor of Nursing at the Yale School of Nursing.

Dr. Paul D. Henteleff led the world's first hospital-based terminal care unit.

Mary Jean Baines, OBE néeSilver was a British palliative care physician. Alongside her colleague Dame Cicely Saunders, she has been called one of the founders of the palliative care movement. She worked at St Christopher's Hospice in London from 1968 to 1997, and from there she established the United Kingdom's first community-based end-of-life care service.

<span class="mw-page-title-main">Pearl Phelan</span> Irish nurse

Pearl Phelan, Sr Joseph Ignatius was a nurse and pioneer of person-centred hospice care, known to many as "Aunt Pearl". In her role at Our Lady's Hospice in Harold's Cross, Dublin, she modernised the facility and transformed end-of-life and palliative care. She introduced the hospice Home Care service so people could die in their own homes. For her initiatives in enabling people to "live life to the full, control their symptoms so they are freed from pain and fear of pain", she received the People of the Year Award in 1987.

Thelma Dorothy Bates was a British oncologist who established the first palliative care service at a British hospital.

References

  1. 1 2 3 Marshall, Katherine; Hale, Deborah (2017). "Understanding Hospice". Home Healthcare Now. 35 (7): 396–397. doi:10.1097/NHH.0000000000000572. ISSN   2374-4529. PMID   28650372. S2CID   36990444.
  2. ↑ Suzanne Myers. "End of Life Care". N2Information. Archived from the original on 2020-01-05. Retrieved 2017-11-10.
  3. ↑ Kilpatrick, Anne Osborne; James A. Johnson (1999). Handbook of Health Administration and Policy. CRC Press. p. 376. ISBN   978-0-8247-0221-2..
  4. 1 2 3 4 "Long 2019" (PDF).
  5. 1 2 Menchik, Daniel A.; Giaquinta, Maya (January 2024). "The words we die by". Social Science & Medicine. 340: 116470. doi:10.1016/j.socscimed.2023.116470. PMID   38091852.
  6. ↑ Moscrop, Janet; Robbins, Joy (2013). Caring for the Dying Patient and the Family. Springer. p. 246. ISBN   978-1-4899-3376-8 . Retrieved 17 January 2020.
  7. 1 2 Robbins, Joy (1983). Caring for the Dying Patient and the Family. Taylor & Francis. p. 138. ISBN   0-06-318249-1.
  8. ↑ Connor, Stephen R. (1998). Hospice: Practice, Pitfalls, and Promise. Taylor & Francis. p.  4. ISBN   1-56032-513-5.
  9. 1 2 3 4 5 Connor, 5.
  10. 1 2 3 4 5 Lewis, Milton James (2007). Medicine and Care of the Dying: A Modern History. Oxford University Press US. p. 20. ISBN   978-0-19-517548-6.
  11. 1 2 3 Lewis, 21.
  12. ↑ Hostel of God Free Home for the Dying (case 16667); vol 1: correspondence and papers. 1892–1947.
  13. ↑ Lewis, 23-25.
  14. ↑ Lewis, 22-23.
  15. ↑ Foley, Kathleen M.; Herbert Hendin (2002). The Case Against Assisted Suicide: For the Right to End-of-life Care. JHU Press. p.  281. ISBN   0-8018-6792-4.
  16. 1 2 3 Poor, Belinda; Gail P. Poirrier (2001). End of Life Nursing Care. Boston; Toronto: Jones and Bartlett. p.  121. ISBN   0-7637-1421-6.
  17. ↑ David Clark (July–August 2000). "Total Pain: The Work of Cicely Saunders and the Hospice Movement". APS Bulletin. 10 (4). Archived from the original on 2011-02-24. Retrieved 2009-06-22.
  18. 1 2 Spratt, John Stricklin; Rhonda L. Hawley; Robert E. Hoye (1996). Home Health Care: Principles and Practices. CRC Press. p. 147. ISBN   1-884015-93-X.
  19. ↑ Lewenson, Sandra B.; Eleanor Krohn Herrman (2007). Capturing Nursing History. Springer Publishing Company. p. 51. ISBN   978-0-8261-1566-9.
  20. ↑ Sullivan, Patricia. "Florence S. Wald, 91; U.S. Hospice Pioneer", The Washington Post , November 13, 2008. Accessed November 13, 2008.
  21. ↑ "The Tennessean from Nashville, Tennessee · Page 80". Newspapers.com. 19 August 2001. Retrieved 2016-04-22.
  22. ↑ Blues, Ann G; Zerwekh, Joyce (1984). Hospice and Palliative Nursing Care. Grune and Stratton. pp. 84–85. ISBN   0-8089-1577-0.
  23. 1 2 Reed, Christopher (2004-08-31). "Elisabeth Kubler-Ross: Psychiatrist who identified five stages of dying - denial, anger, bargaining, depression and acceptance". The Guardian.
  24. ↑ Saunders, Cicely M.; David Clark (2005). Cicely Saunders: Founder of the Hospice Movement : Selected Letters 1959-1999. Oxford University Press. p. 283. ISBN   0-19-856969-6.
  25. 1 2 Newman, Laura (2009-09-27). "Josefina Bautista Magno". BMJ: British Medical Journal. 327 (7417): 753. doi:10.1136/bmj.327.7417.753. PMC   200824 . That vision, fuelled by her drive and gritty determination, led to the International Hospice Institute, soon to metamorphose into the International Hospice Institute and College as the need for education and training became recognised, and finally into today's International Association for Hospice and Palliative Care.
  26. ↑ "IAHPC History". International Association for Hospice & Palliative Care. Retrieved 2009-02-21.
  27. ↑ "Standards for Palliative Care Provision". International Association for Hospice & Palliative Care. Retrieved 2009-02-21.
  28. ↑ Connor, Stephen (2009). Hospice and Palliative Care: The Essential Guide (2nd ed.). CRC Press. p. 202. ISBN   978-0-415-99356-2.
  29. ↑ Connor, 201.
  30. ↑ Villet-Lagomarsino, A (2000). "Hospice and Palliative Care: A Comparison". PBS. Archived from the original on 2015-05-12. Retrieved 2017-08-31.
  31. ↑ "'The 2019 Oscar Nominated Short Films' Review". The New York Times. 2019-02-06. Retrieved 2020-04-10.
  32. ↑ "Stream It Or Skip It: 'End Game' On Netflix, A Short Documentary About Dying Gracefully". Decider. 2018-05-07. Retrieved 2020-04-10.
  33. ↑ "How This Doctor Is Bringing Human Connection Back to End-of-Life Care". Forbes. 2018-08-29. Retrieved 2020-04-10.
  34. ↑ Taubert, Mark (15 January 2016). "Thank you letter to David Bowie from a palliative care doctor". British Medical Journal Supportive & Palliative Care. Retrieved 9 February 2024.
  35. ↑ Leopold, Todd (18 January 2016). "David Bowie's son shares powerful letter". CNN. Retrieved 9 February 2024.
  36. ↑ Wightwick, Abbie (7 June 2016). "Benedict Cumberbatch read out a Welsh doctor's letter about dying". Wales Online.
  37. ↑ Daly, Rhian (20 July 2016). "Watch as Jarvis Cocker reads a letter to David Bowie". NME. Retrieved 9 February 2024.
  38. 1 2 3 4 Kirn, Marie (June 1, 1998). "Book review". Journal of Palliative Medicine. 1 (2): 201–202. doi:10.1089/jpm.1998.1.201.
  39. ↑ Bernat, James L. (2008). Ethical Issues in Neurology (3, revised ed.). Lippincott Williams & Wilkins. p. 154. ISBN   978-0-7817-9060-4.
  40. ↑ Parry, Eldryd High Owen; Richard Godfrey; David Mabey; Geoffrey Gill (2004). Principles of Medicine in Africa (3 revised ed.). Cambridge University Press. p. 1233. ISBN   0-521-80616-X.
  41. 1 2 3 4 5 6 7 8 9 Wright, Michael; Justin Wood; Tom Lynch; David Clark (November 2006). Mapping levels of palliative care development: a global view (PDF) (Report). Help the Hospices; National Hospice and Palliative Care Organization. p. 14. Archived from the original (PDF) on 2011-07-23. Retrieved 2010-02-06.
  42. ↑ "What do Hospice and Palliative Care Programs in Africa Do?". Foundation for Hospices in Sub-Saharan Africa. Archived from the original on 2009-11-20. Retrieved 2010-02-06.
  43. ↑ Wright et al, 15.
  44. ↑ Forman, Walter B.; Denice Kopchak Sheehan; Judith A. Kitzes (2003). Hospice and Palliative Care: Concepts and Practice (2 ed.). Jones & Bartlett Publishers. p.  6. ISBN   0-7637-1566-2.
  45. 1 2 3 Feldberg, Georgina D.; Molly Ladd-Taylor; Alison Li (2003). Women, Health and Nation: Canada and the United States Since 1945. McGill-Queen's Press - MQUP. p. 342. ISBN   0-7735-2501-7.
  46. 1 2 3 Andrew Duffy. "A Moral Force: The Story of Dr. Balfour Mount". Ottawa Citizen . Archived from the original on December 15, 2006. Retrieved January 1, 2007.
  47. ↑ Feldberg et al., 343.
  48. 1 2 3 4 "Fact Sheet: Hospice Palliative Care in Canada" (PDF). Canadian Hospice Palliative Care Association. December 2004. Retrieved 2009-02-21.
  49. ↑ Kofman, Ava (28 November 2022). "How Hospice Became a For-Profit Hustle". The New Yorker . Condé Nast . Retrieved 29 November 2022.
  50. ↑ Carlson, Richard; Devich, Lynn; Frank, Robert (1988). "Development of a Comprehensive Supportive Care Team for the Hopelessly Ill on a University Hospital Medical Service". JAMA. 259 (3): 378–383. doi:10.1001/jama.1988.03720030038030. PMID   3336162.
  51. ↑ Walsh, Declan (2000). "Pioneer Programs in Palliative Care: Nine Case Studies". The Milbank Memorial Fund/Robert Wood Johnson Foundation.
  52. ↑ "Interactive Online Continuing Education for Nurse Professionals". www.rnceus.com. Retrieved 2018-11-28.
  53. 1 2 "NHPCO Releases Updated Edition of Hospice Facts and Figures Report". NHPCO. 2019-07-08. Archived from the original on 2020-05-19. Retrieved 2020-05-12.
  54. ↑ "Royal Trinity Hospice". www.cqc.org.uk. Retrieved 2019-12-23.
  55. ↑ "Facts and figures". Help the Hospices. Archived from the original on 2012-02-20. Retrieved 2012-10-02.
  56. ↑ "Quality of Death Index 2015: Ranking palliative care across the world". The Economist Intelligence Unit. 6 October 2015. Archived from the original on 9 October 2015. Retrieved 8 October 2015; "UK end-of-life care 'best in world'". BBC. 6 October 2015. Retrieved 8 October 2015.
  57. ↑ End of life care: 1. The current place and quality of end of life care, House of Commons Public Accounts Committee, 30 March 2009, paragraphs 1-3.
  58. ↑ "Help The Hospices". Archived from the original on 2012-02-20. Retrieved 2009-02-19.
  59. ↑ Connor, Stephen R.; Bermedo, Sepulveda; Cecilia, Maria, eds. (2014). Global atlas of palliative care at the end of life. Worldwide Hospice Palliative Care Alliance. ISBN   978-0-9928277-0-0. OCLC   1062190212.
  60. 1 2 Osman, Hibah; Rihan, Alaa; Garralda, Eduardo; Rhee, John Y.; Pons-Izquierdo, Juan José; Lima, Liliana; de Tfayli, Arafat; Centeno-Cortes, Carlos (2017-05-17). Atlas of Palliative Care in the Eastern Mediterranean Region. IAHPC. OCLC   989071454.
  61. ↑ "Hospice Egypt". www.hospiceegypt.org. Retrieved 2019-12-04.
  62. ↑ Alsirafy, Samy A.; El Mesidy, Salah M.; Abou-Elela, Enas N. (August 2010). "Where Do Egyptian Palliative Care Patients With Cancer Die?". American Journal of Hospice and Palliative Medicine. 27 (5): 313–315. doi:10.1177/1049909109357613. ISSN   1049-9091. PMID   20167838. S2CID   2837232.
  63. ↑ Ami, S. Ben. "Palliative care services in Israel" (PDF). Middle East Cancer Consortium. Archived from the original (PDF) on 2009-01-31. Retrieved 2009-02-21.
  64. ↑ Shirli Resnizky, Netta Bentur, Jennifer Shuldiner, Shelly Sternberg, Leah Aharoni, Avinoam Pirogovsky, and Ben Koren. "Knowledge and Attitudes of Community Physicians and the General Public regarding End-of-Life and Palliative Care". Jerusalem: Myers-JDC-Brookdale Institute (2016).
  65. ↑ O'Connor, Margaret (2015). "Palliative care in Australia and New Zealand". Oxford Textbook of Palliative Medicine (4th ed.). OUP. pp. 1072–1079. doi:10.1093/med/9780199332342.003.0073. ISBN   978-0-19-933234-2.
  66. ↑ Roguska, Beata, ed. (October 2009). "Hospice and Palliative Care". Polish Public Opinion. CBOS: 1. ISSN   1233-7250.
  67. ↑ "Objectives". Japan Hospice Palliative Care Foundation. Retrieved 2009-02-21.
  68. ↑ Kapoor, Bimla (October 2003). "Model of holistic care in hospice set up in India". Nursing Journal of India. 94 (8): 170–2. PMID   15310098. Archived from the original on 2008-01-19. Retrieved 2010-02-06.
  69. ↑ Clinical Pain Management. CRC Press. 2008. p. 87. ISBN   978-0-340-94007-5 . Retrieved 30 June 2013. In 1986, Professor D'Souza opened the first Indian hospice, Shanti Avedna Ashram, in Mumbai, Maharashtra, central India.
  70. ↑ (Singapore), Academy of Medicine (1994). Annals of the Academy of Medicine, Singapore. Academy of Medicine. p. 257. Retrieved 30 June 2013.
  71. ↑ Iyer, Malathy (Mar 8, 2011). "At India's first hospice, every life is important". The Times of India . Archived from the original on September 24, 2013. Retrieved 2013-06-30. 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.
  72. ↑ "Welcome to Pirkanmaa Hospice - Pirkanmaan Hoitokoti". pirkanmaanhoitokoti.fi. Archived from the original on 2018-08-13. Retrieved 2018-11-28.
  73. ↑ Pang, Samantha Mei-che (2003). Nursing Ethics in Modern China: Conflicting Values and Competing Role. Rodopi. p. 80. ISBN   90-420-0944-6.
  74. ↑ Lai, Yuen-Liang; Wen Hao Su (September 1997). "Palliative medicine and the hospice movement in Taiwan". Supportive Care in Cancer. 5 (5): 348–350. doi:10.1007/s005200050090. ISSN   0941-4355. PMID   9322344. S2CID   25702519.
  75. ↑ "Bradbury Hospice". Hospital Authority, Hong Kong. Retrieved 2009-02-21. 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.
  76. ↑ About Archived 2014-07-14 at the Wayback Machine World Hospice and Palliative Care Day (visited 24. July 2014
  77. 1 2 Community/public health nursing : promoting the health of populations. Nies, Mary A. (Mary Albrecht),, McEwen, Melanie (Edition 7 ed.). St. Louis, Missouri. October 2018. ISBN   978-0-323-52894-8. OCLC   1019995724.{{cite book}}: CS1 maint: location missing publisher (link) CS1 maint: others (link)

Further reading

Commons-logo.svg Media related to Hospice at Wikimedia Commons

This page is based on this Wikipedia article
Text is available under the CC BY-SA 4.0 license; additional terms may apply.
Images, videos and audio are available under their respective licenses.