Hospice emerged in response to improvements in medicine and technology to address the needs of the dying more effectively than hospitals can. Caring for only the terminally ill, hospices can be independent, hospital-affiliated, nursing home based, in an extended care facility, or home health agency based.
The modern hospice movement began in Great Britain. Its origins trace back to the Middle Ages when clergy operated houses or shelters for strangers, soldiers, and pilgrims. In 1842 a group of Catholic women established a hospice in France for poor women who had terminal illnesses. This model inspired Dame Cicely Saunders to establish St. Christopher’s Hospice in Sydenham, England, in 1967. In 1963 she had introduced the hospice concept to Yale medical students, leading Florence Wald, dean of the Yale University School of Nursing, to found the first U.S. hospice in New Haven, Connecticut, in 1974.
Hospice gives the dying some control over their lives, pain, and medications, and it removes the isolation that often characterizes dying in hospitals. To enter hospice programs, the patient and family acknowledge the probability of the patient dying and that a cure is unlikely. Hospice can provide people dying at home with the care, comfort, and dignity that they need in their dying process.
Hospice care begins where traditional medicine ends, allowing the dying a dignified death with less pain and more ability to truly live until they die. Hospice may increase communications between patient, physician, and family to improve pain relief and symptom management. The challenge is to give the dying meaning, dignity, and life during a time of great fear and apprehension in the face of pain, distressing symptoms, dependency, extended suffering, loss of dignity, endless meaningless days, dying alone, and financial disaster.
Dame Saunders saw pain management as the first goal of hospice. If their pain is managed, patients can take care of unfinished business and attend to aspects of their lives and important relationships. Pain increases death anxiety and depression. Those without pain are better able to think and to resolve at least some of their fears.
Fear often keeps us from thinking clearly and discovering alternatives to our situation. Hospice thus pursues aggressive pain and symptom management and creates a comforting environment without rigidity in the caregiver’s approach. Unlike hospitals, which typically offer aggressive life-prolonging treatments not always in keeping with the values and preferences of patients and their families, hospice need not try to prolong life or provide painful treatments that may cause additional suffering.
Hospice tries to make patients as comfortable as possible by allowing them to stay at home or, if this is not possible, to stay in a homelike setting where patients can have treasured possessions, family, and friends. Even if hospitals allowed pets and did not have visiting regulations, they would be unable to offer the care and dying with dignity that hospice can provide. The hospice team approach encourages adaptations to different cultural groups, honors traditions, and makes families an integral part of the process. Hospice encourages families to be as involved as they wish to the extent that they are able, and it works around the families’ and patients’ schedules.
Hospice tries to improve the physical and spiritual quality of life of the patient as a person rather than as a disease, including physical pain, relationships, communications, and dignity. Hospice staff volunteers work as much with the family as with the patient. They may have to teach family members how to change dressings, remove a catheter, administer medicine, use bedpans, use a hospital bed, or assist the dying person in other ways. Because relationships in families are unique, there is no set pattern as to what hospice teaches, who does which task, or how exactly to administer to the needs of the dying. Unlike hospitals, follow-up care for the families continues after the patient’s death to aid the families in their grief.
Hospitals and Hospices
Hospital death is typically more impersonal than death under hospice care. Medical schools teach a professional persona that leads to distancing from patients. Medical students learn to use precise medical terms that often leave patients and families confused about diagnoses, treatment, symptoms, and even what the illness might actually be. It is not that physicians cannot care effectively for the dying and their families, but rather that the system is not designed to allow them to have the time and setting to offer the level of compassionate care that hospice can provide. Living until you die is a goal of hospice. Healing and delaying death is the goal of hospitals. Yet people most often die in hospitals.
Staying at home is typically less expensive than being cared for in a hospital. Often programs exist to enhance in-home care, by providing equipment, medicine, meals, and other needs at little or no cost to the dying or their families. Although nurses may be expensive, treatment is still cheaper at home than in hospitals. For most families, economics is not the issue but rather the ability of family members and the staff who assist them to provide quality care, pain management, and a good quality of life and still maintain their own lives, jobs, and quality of life. End-of-life care is demanding and includes limiting the length and numbers of visitors for the terminally ill person, managing neighborhood noise, helping the ill person negotiate stairs, bathing, changing catheters, dealing with emotional outbursts and the person’s fear of the caregiver leaving to go shopping or do other required errands, and avoiding family disagreements. Consequently, despite the costs, some family members would prefer not to have the person die at home. Also, hospitals may make families more secure in their belief that they did everything possible for the dying person.
Most families want to care for their dying, but many are not physically, financially, spiritually, or emotionally able to aid the dying. While physicians first seemed to avoid hospice and perhaps saw it as a failure on their part, now most physicians seem to have embraced the approach. Hospice has even had an impact on hospitals, where death is not as impersonal and bureaucratic as it once was. The growth of medical ethics, advanced directives, palliative care, and bereavement services in hospitals is evidence of the impact of hospice, which stretches far beyond the dying.
- Connor, Stephen R. 1998. Hospice: Pitfalls, and Promise. Bristol, PA: Taylor & Francis.
- Saunders, Cicely M. and Robert Kastenbaum. 1997. Hospice Care on the International Scene. New York: Springer.
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