Hospice and Palliative Care
“Hospice comes in when you’re about to die.” “Hospice takes place in a special kind of facility.” “Hospice is only for cancer patients.” “Palliative care just means pain medications.”
These are some of the common misperceptions that many of us have about hospice and palliative care. Hospice, as we know it today, was developed by Dame Cicely Saunders, a British nurse who understood that dying patients and their families had special needs that were not being met by the medical care system. One of her most important ideas was her focus on the whole patient and what she termed “total pain,” meaning not only the patient’s physical symptoms but also his or her psychological and spiritual needs, as well those of the family. Hospice care as a concept was introduced in the United States in 1971 by the dean of the Yale School of Nursing, who started Hospice, Inc. in the United States.
In the past, hospice care was fairly rigid and required that a patient no longer be receiving chemotherapy or other forms of acute treatment and be expected to die within six months. Yet a group called the National Hospice Work Group, a coalition of hospice CEOs, can recommend facilities that do not require patients and families to choose between treatment and hospice care. In fact, patients under its umbrella may continue to receive whatever treatment or special feeding makes them more comfortable or reduces their symptoms (www.nhwg.org).
Hospice care in the United States was initially provided by trained volunteers. Now, however, it is an important part of the healthcare system, covered by both Medicare and Medicaid as well as by most private insurance. In fact, Medicare also covers the cost of support for family members after a loved one’s death. The majority of hospice care is delivered in the home, but it is also available in hospitals, nursing homes, and prisons.
Hospice care does not replace medical care but rather determines the needs of a specific individual or family and then brings in whatever is necessary to provide that care. This may include the services of specially trained hospice nurses, social workers, pastors, and others who can care for and soothe the dying person as well as his or her family.
Palliative care is often confused with hospice care. As Gail Sheehy notes in Passages in Caregiving: Turning Chaos into Confidence, her most recent book about caring for her husband through his battle with cancer over many years, “Palliative care is the opposite of imposing a deadline on patients who are not responding to acute medical treatment yet who are still eager to live.” Palliative care, she notes, is appropriate from the initial diagnosis of a chronic illness, because it focuses on maintaining a patient’s quality of life for as long as the person is alive.