Palliative Care in the Nursing Home
Keay, Timothy J., Generations
For a variety of reasons, the quality of dying in this setting leaves much to be desired.
Approximately one out of every five deaths in the United States occurs in nursing facilities, although the quality of dying in this setting leaves much to be desired. There are indeed considerable challenges to providing systematic palliative care in nursing facilities. Hospice programs provide a mechanism for improved palliative care, but they must meet dual regulatory requirements and extra expenses and have not been widely used. Furthermore, the needs of dying residents not meeting Medicare hospice benefit intake requirements have not been sufficiently addressed.
With the passage of the Nursing Home Reform Act of 1987, a major change began in nursing homes, transforming them into "nursing facilities;' while standardizing and regulating assessment and care procedures (Field and Cassel, I997). The regulations emphasize rehabilitation and maintenance, while at the same time many facilities care for patients discharged from hospitals "quicker and sicker" The industry is now the most regulated in the United States. These changes make it more efficient to be part of a large chain, and many of the familyowned, smaller nursing homes have sold their bed licenses over the past twenty years. There are now fewer, generally larger facilities. For example, on January I, I996, of the I6,84o facilities with 1,559,7oo residents occupying I,756,8oo beds, two-thirds were for-profit, and over half were part of a for-profit or not-for-profit chain (Rhoades, Potter, and Krauss, 1998). Within a I.6 million resident census, approximately a third, or half a million persons, die each year (Brock and Foley, 1998).
It has been repeatedly noted that dying in a nursing facility is a difficult grace (Field and Cassel, I997). Resident deaths are often accompanied by inadequately managed pain and other discomfort, aggravated by a lack of physicians and registered nurses and lack of attention to spiritual support. Regulations holding facilities accountable for monitoring weight loss and other signs of terminal illness often actually inhibit proper recognition and treatment of dying residents. This situation occurs even though the nursing facility staff recognizes (at least covertly) that the patient is dying.
To address these challenges, Medicare instituted certified hospice programs, although they still provide care for less than 5 percent of those dying in nursing facilities. Hospice programs can bring in a host of services otherwise unavailable, including expertise in palliative medicine, nursing, social work, and clergy assistance; goal and quality reviews; and increased funding for the acute increase in service needs that accompany the dying process (Keay and Schonwetter, I998). To date, hospice services have been underused because of misunderstandings between staff of hospice and nursing facilities and conflicts between regulations governing each, fiscal incentives leading to inappropriate life-sustaining therapies, and a lack of familiarity with hospice among physicians and nursing facility administrators. In addition, hospice programs try to select nursing facility residents who meet Medicare's criterion for hospice benefits but who will not bankrupt the hospice program. Nursing facility residents are often frail geriatric patients, not the stereotypical outpatient hospice cancer patients, who have relatively high function until very late in the disease trajectory, followed by a relatively short period of rapid decline near the end of life-during which time they receive hospice care. In contrast, the majority of dying nursing facility residents suffer from chronic debilitating and dementing illnesses as well as diseases that degrade function in a number of ways. Their disease trajectory is often characterized by low initial function, with repeated episodes of sudden deterioration and recovery until a fatal episode. In such cases, it is difficult to determine when the patient is in the final stage of illness, for which hospice services have been deemed appropriate. …