Advance Care Planning and Nursing Home Residents and Families: Lessons Inspired by TV Game Shows
If there is any setting where end-of-life (EOL) discussions should be expected, appreciated, and embraced, it is in long-term care settings, in particular nursing homes. Not all nursing home residents face imminent death, but the vast majority of long-term care nursing home residents suffer from advanced chronic conditions and are in advanced older adulthood. Indeed, about half of nursing home residents are age 80 or older at the time of admission (Buchanan, Rosenthal, Graber, Wang, & Kim, 2008). The advanced illness and age increase the chance of dying. Using data from the Health and Retirement Study (HRS), Kelly et al. (2010) reported that of the HRS respondents who died as nursing home residents, the mean length of stay was just over a year (13.7 months) and that two-thirds of HRS respondents who died in the nursing home did so within a year of admission. Lengths of stay vary widely. Data from the 2004 National Nursing Home Study indicate the median length of stay on the day the survey was administered was 463 days, although 20% of residents had been there less than 3 months and 25% for more than 3 years (National Center for Health Statistics [NCHS], 2008, Table 12).
Of the 2.4 million 2009 U.S. deaths, about one in five (21%) occurred in nursing homes (CDC, 2012). Data from death certificates indicate that 278,837 persons aged 85 or older died in a nursing home in 2009, accounting for over a third (38%) of all deaths of people aged 85 or older. These figures underrepresent the amount of death experienced by nursing home residents, because the numbers exclude residents who die en route to the hospital or while hospitalized. For example, data from the HRS indicated that 23% of respondents who were nursing home residents died in a hospital (Kelly et al., 2010). Although persons aged 85+ account for a plurality of nursing home deaths, it is important to note that 191,831 persons between the ages of 65 and 74 died in nursing homes in 2009, as did close to 36,000 persons under the age of 65 (CDC, 2012). Most people who die in nursing homes are older adults, but not all. If we focus on deaths of persons with dementia, we find that about two thirds of dementia-related deaths occur in nursing homes (Volicer, 2005).
The Role of Contemporary Nursing Homes
While dying is not uncommon in nursing homes, in some respects it has been obscured. Since the changes in hospital reimbursements, brought about by Medicare's prospective payment in the 1980s, the core mission of U.S. nursing homes has become less clear. Some of this confusion can be attributed to the pronounced growth in proportion of “skilled” beds that provide post–hospital care (e.g., subacute or rehabilitation) and are reimbursed at a higher rate, with higher profits than long-term care beds. In fact, the national average daily Medicare skilled care reimbursement rate was $412.42 per day in 2008, compared with the national average Medicaid reimbursement for long-term care of $164.68 per day (Eljay, 2012). In 2009, the actual cost of providing care to Medicaid residents exceeded Medicaid reimbursement by $16.79 per resident per day according to the Eljay Report, 2012, prepared for American Health Care Association (AHCA). People who are admitted to nursing homes for skilled care typically remain less than 3 months before being discharged back home. In some cases, skilled care residents remain in the nursing home, where their level of care converts from short-term rehabilitation to long-term care. For the rest of this chapter, “long-term care” residents include all residents who are not in the nursing home for sub-acute care or short-term rehabilitation.
Within a nursing home, then, important missions compete for preeminence. Do nursing homes mainly provide short-term rehabilitation? Long-term care? Care for the dying? How an organization answers this question profoundly influences the culture of the organization. An emerging mission is the provision of excellent palliative care, along with both
short-term rehabilitation and long-term care. So far, the industry has yet to fully embrace a palliative care mission, despite the fact that the majority of residents meet the criteria for palliative care put forth by the National Consensus Project for Palliative Care (2009), due to having a progressive chronic condition, a life-threatening illness, or a serious or terminal illness.
The goal of palliative care is to prevent and relieve suffering and to support the best possible quality of life for patients and their families, regardless of the stage of the disease or the need for other therapies. Palliative care is both a philosophy of care and an organized, highly structured system for delivering care. Palliative care expands traditional disease-model medical treatments to include the goals of enhancing quality of life for patient and family, optimizing function, helping with decision making, and providing opportunities for personal growth. As such, it can be delivered concurrently with life-prolonging care or as the main focus of care (National Consensus Project for Quality Palliative Care, 2009, p. 6).