Hospice Movement

Hospice as a modern social movement seeks to change the individual experience of dying, as well as the nature of death and dying for society as a whole. The movement defines the unit of care as patient and family, and increasingly caregivers, volunteers, and the bereaved. It strives to be an inclusive, holistic, and creative philosophy of care rather than a specific place or facility. The hospice philosophy promotes an acceptance of death, and the dignity and full humanity of dying persons. Hospice care is quality end-of-life care that focuses on keeping patients comfortable and able to live until they die—as international hospice activist Dr. Cicely Saunders expressed it. Rather than cure, quality of care for the whole person is the ultimate objective. Hospice does not consider dying a medical event but a life experience that considers the emotional and spiritual needs of the dying and their caregivers as equally important as their physical needs. Hospice respects patient autonomy—that is, the right to die one's own death in one's own way—as long as there is no harm or violation of others. Hospice teams advocate for the right of patients to decide on the tradeoffs between controlling pain and feeling alert. The hospice concept rejects decisions to hasten death and also extreme medical efforts to prolong the life of the terminally ill.

Originally the word hospice, stemming from the Latin word hospitium, meaning guesthouse, signified a place for weary and sick travelers returning from religious pilgrimages. The Christian provenance of the hospice dates to the Crusades of the Middle Ages, and the provision of emergency shelter and aid for wounded and dying knights. The Irish Sisters of Charity established Our Lady's Hospice in Dublin in the late 19th century and in the early 20th century founded St. Joseph's Hospice in London. The founding of the modern hospice movement is credited to Dr. Cicely Saunders, a British nurse, social worker, and physician, who did some of her pioneering work in pain control at St. Joseph's before establishing St. Christopher's Hospice near London in 1967. She wanted to introduce a distinctly Christian vision to care for the dying. In the modern hospice movement, care for the dying may be provided at the patient's home, family member's home, in hospital and nursing homes, day hospices (respite), as well as free-standing, purpose-built hospices. True to its Latin etymology, hospes, which means both host and guest, the modern hospice emphasizes hospitality and relationship, a process between humans rather than a particular location or a solitary event.

The defining moment of the modern hospice movement is represented as a conversation between the dying and living: Cicely Saunders shared with a dying patient (David Tasma, a Polish Jew dying of rectal cancer in a busy London teaching hospital) her dreams of a better way of caring for the dying, and he left her 500 pounds in his will. This was the first donation to St. Christopher's Hospice. Saunders's initial approach of “total care for total pain” recognized the importance of effective pain and symptom management; total pain was defined in 1964 as including not only physical symptoms but also mental distress and social or spiritual problems. On the basis of her research that revealed that addiction was not a risk when opiates were given to lessen physical pain, she revolutionized the way that drugs were administered to the terminally ill. Patients who received pain medication on a round-the-clock basis could then live more fully because they were never allowed to reach levels of severe pain. As the fear of pain increases pain, the knowledge that pain is not going to happen became a central feature of the comfort offered to hospice patients and their families. Saunders's approach evolved into holistic, interdisciplinary, and family-centered care that went beyond the patient's death to offer support to the bereaved.

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