Terminal care

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. 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 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). 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.