Hospice: a homelike setting that provides palliative – or end-of-life – care for a terminally ill patient.

In medieval times, a hospice provided shelter for weary travelers. Today, hospice is a program of care that serves the needs of the terminally ill and their families. People who seek help from hospice either have or know someone who is going to die from a serious illness, such as cancer, end stage renal, cardiac, pulmonary, and other life threatening diseases. Most hospice patients have a life expectancy of six months or less and are no longer undergoing curative treatment.

In the United States, the hospice movement grew up in direct response to the lack of comprehensive care for terminally ill patients and their families. Health care consumers and health care professionals were the strongest supporters of hospice care; they realized that patients and their families have a variety of physical, sociological, spiritual, educational and emotional needs that weren’t being met.

While technology had increased the length of life, it had also increased the isolation a patient – and his family – felt. Prior to the hospice movement, health care was often impersonal, and a lack of communication between the members of a patient’s health care team was common.

By the mid-seventies, more than 70 percent of deaths occurred in hospitals and other institutions, such as nursing homes. People weren’t dying at home, surrounded by familiar settings and people. This shift in the location of dying had a dramatic impact on the nature of dying. Caregivers faced new problems: deciding what extent and level of aggressive treatment was appropriate; how to properly care for and support the patient; how to deal with the isolation that comes from being away from home; and also how to meet the emotional, spiritual and mental needs of the patient and his family.

Before the hospice idea took hold, patients were often shifted between care settings. This sometimes resulted in inadequate admissions and discharge planning and poor coordination between the various care providers. This disorganized approach to those who were dying often had a negative effect on a patient’s identity and sense of self worth. There was little room for meaningful interaction with other people, which can result in depression and loss of identity. With the right support from health care providers such as a hospice, a family can become a strong source of support for the patient. Too often death is surrounded by mystery, fear, guilt and anxiety. The dying person often has little opportunity to interact meaningfully with other people and to bring his life to a close with some sense of personal control.

HOW HOSPICE WORKS

Proponents of hospice consistently maintain that hospice is a philosophy of care, rather than a place of care. The basic tenets include:

• A comprehensive interdisciplinary team approach to care, addressing the patient’s physical, mental, educational, spiritual and emotional needs
• Recognizing the patient and his family as the unit of care
• Health care workers, from physicians, nurses, social workers, home health aides, counselors, to spiritual care members, joining forces when caring for the patient and family
• Keeping the patient at home – or in a homelike setting – as much as possible; however, inpatient care is available when needed
• Focusing on improving the quality of remaining life
• Making services available around the clock, every day of the week, by informed and trained professionals
• Providing bereavement care follow-up with the family after the patient dies for up to 13 months
• Consistent care, whether in an inpatient or at-home setting
• Volunteers are specifically trained to provide a variety of services and support roles for hospice patients, families, and programs.
• Most third party payers, such as: Medicare, Medicaid, and Private Insurance cover hospice services.

A nationwide Gallup Survey conducted by the National Hospice Organization in 1996 indicated nine out of ten adults would prefer to be cared for at home if terminally ill with six months or less to live. The majority of adults would be interested in a comprehensive program of care such as hospice.

The National Hospice and Palliative Care Organization (NHPCO) represents hospices nationwide. Patients who elect hospice care typically are receiving hospice services by NHPCO members. To gain more information regarding hospice and palliative care, please visit the NHPCO website.

The founding principle of a hospice program is to improve the quality of a patient’s life, and to support the desire of most dying patients to experience their last days at home with loved ones. However, circumstances may prevent the patient to remain at home. This does not mean that hospice care services are discontinued. Hospice programs have the ability to provide hospice care in short-term acute inpatient settings, respite care settings, Assisted Living and Skilled Nursing Facilities when indicated. It is vitally important that terminally ill patients understand the option of hospice care and what it can offer to them in terms of comfort, peace, and dignity.

The poet Emily Dickinson called “hope” a thing with feathers that perches in the soul and never stops singing its wordless tune. With hospice, the focus of hope changes from curing illness to enhancing quality of life.

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