Palliative Care for Patients with Dementia: A National Survey

Patients with dementia have been found to have substantial unmet palliative care (PC) needs, including behavioral concerns, pain, difficult decisions regarding treatment and placement, and caregiver burden.1–9 There is evidence that hospice10,11 can benefit patients with dementia and their families. In spite of this, few hospice programs have historically provided care to patients with dementia as their primary diagnosis. A 1995 survey found that only 21% of hospice programs had enrolled patients with a primary diagnosis of dementia and that 1% of all hospice patients had a primary dementia diagnosis.12 Rates of hospice referral of patients with dementia in nursing homes range from 6%13 to 22%9 and include 11% of home care clients.13 These low percentages may be because of the numerous barriers to providing hospice services to patients with dementia. Many healthcare providers and family members do not perceive dementia as a terminal disease,14 in spite of growing evidence that persons die of this disease.9 The memory and communication deficits in dementia make recognition and management of symptoms especially challenging.8 The caregiver experience involves substantial burden,4,15 extends over a prolonged time period, and has patterns of anticipatory grief and bereavement that differ from those of other illnesses,14–16 but most importantly, the hospice model and its funding were developed with the disease progression of cancer in mind. Many cancers, especially solid tumors, follow a predictable disease trajectory, with a period of marked decline in the final months. In contrast, patients with dementia often have a prolonged period of gradual decline.14,17 Finally, the criteria used to establish hospice eligibility for dementia have been found to be inaccurate in predicting mortality.18 The hospice criteria also assume that patients lose certain abilities in a predictable pattern and are therefore difficult to apply to many patients.18 These challenges make it difficult to prognosticate time to death, which is a requirement for the Medicare hospice benefit.12,19,20 Despite these challenges, the proportion of hospice patients with a primary diagnosis of dementia has risen from 6.8% in 200121 to 11.1% in 2008,22 even as the total number of patients that hospice serves has increased. The last decade has also seen tremendous growth in PC programs outside of the traditional hospice insurance benefit as an additional mechanism for providing care to patients with serious illnesses. Although this trend has been best documented in hospitals,23,24 home health agencies and hospices have also begun to offer PC services. PC outside of the hospice benefit provides another opportunity to provide care to patients with dementia,25,26 who may not quality for hospice until late in the disease but may have substantial unmet PC needs. Although the Medicare hospice eligibility criteria do not constrain service by PC programs, challenges involving prognostication, communication, and other concerns may persist.27 Little is known about the extent to which PC programs serve patients with a primary diagnosis of dementia or the barriers they face in providing this care. The primary goals of this study were to determine the extent to which hospice and nonhospice PC programs provide services for patients with dementia and to identify barriers to and facilitators of the provision of nonhospice PC to patients with dementia from the perspective of program administrators.