Hospice Care for Patients with Dementia

Abstract

Dementia is a leading cause of death in the USA. Although guidelines exist to determine hospice eligibility for dementia, only a small percentage of patients dying with this condition receive hospice care. Hospice recipients with dementia have not been well characterized, and little is known about the quality of care they receive. The Family Evaluation of Hospice Care (FEHC) survey was adopted by the National Hospice and Palliative Care Organization (NHPCO) in 2003 as a standard benchmarking tool. The FEHC collects data from bereaved families regarding the quality of hospice care. An online repository of 2005 FEHC data was used to describe hospice recipients over 65 years of age who died with dementia and to examine their families' evaluation of hospice care. Decedents with cancer and chronic terminal conditions were also analyzed for comparison purposes. A total of 77,123 surveys submitted by 796 hospices nationwide met the study's eligibility criteria. Decedent diagnoses were as follows: dementia, n=8,686 (11.3%); cancer, n=35,693 (46.3%); and other chronic diseases, n=32,744 (42.4%). Decedents with dementia were more likely to be >85 years, female, and have length of stays >180 days. Evaluation of care in all FEHC domains did not significantly differ between groups. Approximately three-quarters of bereaved family members of decedents in all groups perceived the overall quality of care as excellent; however, opportunities to improve care were also identified. These data suggest that the evaluation of hospice care for older patients is generally high, and does not vary with respect to terminal diagnoses.

Dying with Dementia: What We Know after More than a Decade of Research

“…Undertreatment of symptoms is a frequently-cited concern in dementia at the end of life [29,59], but few studies verify this concern with untreated pain infrequently reported [47,60,61]. An Italian study reported that over three-quarters of patients in pain were treated pharmacologically [37].…”

“…For example, antipyretics (acetaminophen, NSAIDs) were used in 34% of patients with dementia and pneumonia in the late 1990s, and in 54% of such patients a decade later. US studies based on data from the 1990s reported inequalities between dementia patients and patients without dementia [43], but newer work shows that dementia patients benefit from hospice care as much as patients without dementia [61], and that the quality of nursing home care was at the same level [69]. A Swiss study showed that hospital care for dementia patients by a dedicated and research-minded team does not necessarily involve more aggressive care for dementia patients [28].…”

“…The results of selected studies have been integrated in a recent review, showing considerable unmet needs in families [85]. Through the beginning of 2010 (Box 1, Table 1), at least 45 studies [28,[33][34][35][36][37][38][40][41][42][43]46,47,52,60,61,63,65,66,80,[86][87][88][89][90][91][92][93][94][95][96][97][98][99]110] in another 26 publications [39,44,45,53,54,64,67,69,[111][112][113][114][115]…”

“…However, most studies have been small, retrospective, or both. In retrospective work, US hospice care for dementia patients has been associated with favorable evaluations by families, similar to hospice care for other conditions [61] and better compared with traditional dementia care [46], but it is unclear to what extent these findings can be attributed to enrollment in hospice and an expectation of death [45] when end-of-life care may be better perceived. This suggests that preparing families for death is a way to improve care.…”

Dying in U.S. Nursing Homes with Advanced Dementia: How Does Health Care Use Differ for Residents with, versus without, End-of-Life Medicare Skilled Nursing Facility Care?

“…8,9,13 Although the proportion of dying NH residents with advanced dementia accessing hospice almost tripled between 1999 and 2006 (to approximately 40%), 14 there remain important barriers to greater and timelier hospice access. 15,16 A major barrier is the Medicare policy disallowing simultaneous access to Medicare Part A hospice care for NH residents receiving Medicare skilled nursing facility (SNF) care (when SNF care is for the terminal condition).…”