Patients Dying with Dementia: Experience at the End of Life and Impact of Hospice Care

Abstract

To evaluate the impact hospice enrollment has on the terminal care of patients with dementia and describe the symptom burden these patients experience, caregivers of dementia decedents were assessed in a mortality follow-back survey. Patients had been managed through academic outpatient geriatric clinics in Chicago, IL. A total of 135 family members or other knowledgeable informants of persons who had died with dementia were queried about the patient's preferred location of death, location of death, satisfaction with patient care, and assessment of patient's pain and most bothersome symptom. Patients who were enrolled in hospice were significantly more likely to die in their location of choice (odds ratio [OR] 9.67; 95% confidence interval [CI] 2.57-37.0), and less likely to die in the hospital, (OR 0.04; 95% CI 0.01-0.18), compared to nonenrollees. Caregivers of hospice enrollees were more likely to rate patient care as excellent or very good (OR 5.65; 95% CI 2.61-10.34), compared to nonenrollees. Over 50% of caregivers of hospice enrollees and nonenrollees reported patient pain at a moderate intensity or higher on average in the last two weeks of life. No effect was observed between a caregiver reporting pain at a moderate level or higher and whether the patient was enrolled in hospice (OR 0.58; 95% CI 0.22-1.54). Hospice enrollees did not experience improvement in their most bothersome symptom's frequency, severity, or amount of distress caused (P=0.21, 0.39, 0.95, respectively), compared to nonenrollees. These results suggest that dying patients with dementia who are enrolled in hospice programs are more likely to die in their locations of choice and their caregivers are more likely to perceive that care is excellent or good than those who do not obtain hospice services. No effect on pain or other symptoms could be demonstrated in this analysis.

Place of death and end-of-life transitions experienced by very old people with differing cognitive status: Retrospective analysis of a prospective population-based cohort aged 85 and over

“…283 (100) 15 (22) 18 (20) All 76 (66), [57][58][59][60][61][62][63][64][65][66][67][68][69][70][71][72][73][74][75] 35 (55), 44 (42), [33][34][35][36][37][38][39][40][41][42][43][44][45][46][47][48][49][50][51][52] 155 (55) …”

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

“…In contrast, pain and shortness of breath are frequently reported in dementia patients. Studies (see Box 1 for the methods of the literature search [29][30][31][32]) report pain in 12% to 76% of patients [28,[33][34][35][36][37][38][39][40][41][42][43][44][45][46][47]. The lower percentages were reported in studies using the Minimum Data Set (MDS) [43], which is mandated in US nursing homes and is known for underreporting [48], in regards to "uncontrolled pain" [38] and in more recent work related to pain [44].…”

“…Agitation is a symptom which is less frequently assessed in studies on the last phase of life, but may be as common as pain and shortness of breath [28,34,44,53,54]. One study found that psychiatric symptoms such as agitation and depression were less bothersome to family members than pain, breathing problems, and memory loss [46].…”

“…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.…”