Hospice Care

Hospice Care

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.

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 CrossDublinIreland 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

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 HospiceFlorence 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] 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, CanadaHungaryItalyJapanMoldovaNorwayPolandRomaniaSpainSwitzerland, the United Kingdom and the United States.[27]

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.

Popular media

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]

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.[34] Nevertheless, the movement has spread throughout the world.[35]

Blaine

Blaine is a city in Anoka county in the State of Minnesota. The population was 57,186 at the 2010 census.[5] The city is located mainly in Anoka County, and is part of the Minneapolis–Saint Paul metropolitan area.

 

Interstate Highway 35W, U.S. Highway 10, and Minnesota State Highway 65 are three of the main routes in the city.

Until 1877, Blaine was part of the city of AnokaMinnesota. Phillip Laddy, a native of Ireland, is recognized as the first settler in Blaine and settled near a lake that now bears his name, Laddie Lake, in 1862. Laddy died shortly after his arrival and his survivors moved on to Minneapolis. Another early settler was the Englishman George Townsend, who lived for a short time near what would today be Lever St. and 103rd Ave.