Care of the Dying Patient

4. Questions and Answers about Hospice: A Guide for Physicians - Steven Zweig and Paul Tatum

45 4 Questions and Answers about Hospice: A Guide for Physicians Steven Zweig and Paul Tatum The idea that dying is a natural part of life conflicts with the medicalization of death to which we have become accustomed .1 However, all would agree that it would be inappropriate to treat only the disease of the dying patient. We would be remiss to ignore the familial, social, cultural, and spiritual dimensions of dying. Disease-oriented care focuses solely on prolonging life, whereas comfort and quality of life are at the heart of palliative care. Palliative care is the foundation for hospice services, although palliative care may be administered in any health-care setting, not just within hospice. The word hospice derives from the Latin concept of hospitium, or hospitality . It was popularized by nurse and physician Dame Cicely Saunders, who founded one of the first hospices, St. Christopher’s in London. Medicare, Medicaid (in most states), and most private insurance programs cover hospice services. Since the Medicare hospice benefit was introduced in 1983, millions of terminally ill Americans and their families have relied on this program of interdisciplinary comprehensive palliative care at home. Most dying patients and their families want what hospice has to offer. A 1996 Gallup Poll showed that, should they become terminally ill, 88 percent of adults would prefer to be cared for in their own homes or that of a family member rather than in a hospital.2 A similar study of cancer patients in 2003 showed that nearly 90 percent would 46 Care of the Dying Patient prefer to die at home.3 Unfortunately, 75 percent of Americans do not know that hospice care can be provided in the home, and 90 percent are unaware that hospice care can be fully covered by Medicare.4 Nearly 2.4 million Americans died in 2007; about 930,000 of them (39 percent) received hospice care.5 About 50 percent of Americans who die each year die in hospitals, 25 percent in nursing homes, and 25 percent in their own homes or elsewhere. Of all the deaths of patients in hospice programs in 2007, 70 percent took place in the patients’ places of residence, which could be private residences, nursing facilities, or residential facilities . Only 9 percent of hospice patients died in acute-care hospitals.6 Hospice care is guided by an individualized plan developed by an interdisciplinary team, including a physician medical director, nurse, chaplain, social worker, and the patient’s attending physician, using a comprehensive case-management approach. The goal is the creation of a care plan consistent with the preferences of the patient and designed to manage pain and other symptoms, as well as providing social support to the patient and the family. This chapter will answer some frequently asked questions about hospice and what it can provide. What services are provided under the hospice benefit? Under the direction of the attending physician, hospice provides the following: Registered nurses, often with special training in endof -life care, furnish direct patient care and case management . The hospice nurse visits the patient as needed and is on call twenty-four hours a day for support of the patient and family. A medical social worker assesses needs and delivers social and instrumental support to the patient and family. • • 47 Questions and Answers about Hospice A chaplain provides pastoral care assessment and spiritual support as desired by the patient and family members. The medical director supplies oversight and consultation to the multidisciplinary team and to the attending physician if desired. Trained hospice volunteers offer listening and companionship to the patient and family. Home health-care and homemaker services are also available , as are dietary counseling and ultimately bereavement support. Physical-, occupational-, and speech-therapy services are also available when included in the patient’s written plan of care. One thing hospice does not supply is a twenty-four-hour, in-home caregiver. In fact, to be eligible for hospice, a dependent patient must have a designated caregiver, who could be a family member or not. Hospice services are primarily designed for caring for the dying at the patient’s site of residence, whether in the home, an assisted-living center, or a nursing home. There are, in fact, four levels of hospice care under the hospice benefit: Routine home care: Standard hospice services as above are provided at the patient’s residence. Respite care: Five days of respite...