Do Community and Caregiver Factors Influence Hospice Use at the End of Life Among Older Adults With Alzheimer Disease

A lzheimer disease (AD), the most common form of dementia1 that affects adults 65 years or older, was ranked the sixth leading cause of death in the United States in 2009.2 Alzheimer disease is incurable, progressive, and terminal.1 Terminal symptoms of AD such as loss of communicative abilities, loss of bodily functions, and becoming bed-bound,1 as well as family and friends’ lengthy ordeal in providing care, all reinforce the need for and appropriateness of hospice use among people with AD at the end of life.3 Benefits of hospice for care recipients include appropriate management of physical and emotional symptoms that cause pain, discomfort, and distress; nutritional management; and attention to social and spiritual needs; family/caregiver benefits include emotional support, respite, and grief counseling.3 The reported extent of hospice use among people with AD differs depending on the type of data reported and whether the data source is hospice organizations or Medicare claims files. Annual survey data on hospice admissions by primary diagnosis from the National Hospice and Palliative Care Organization indicated that the percentage of hospice admissions with dementia or AD has ranged from 9.8% in 2005 to 11.2% in 2009 and that dementia and AD were the third most common primary noncancer diagnoses in 2009.4 Alternatively, data on hospice use by diagnosis from Centers for Disease Control and Prevention death certificate records and Centers for Medicare & Medicaid Services hospice claims files for 2002 indicated that 41% of persons 65 years or older who died with a primary diagnosis of AD had used hospice care at some point during the year before their death.5 Furthermore, in both databases, AD was one of three causes of death with the highest hospice utilization rates in 2002 (malignancies = 65%; kidney disease and nephritis = 55%).5 Although both private and federal sources of data suggest that dementia and AD account for a substantial proportion of hospice use among older adults, hospice services are still underutilized in this population, with less than half of all dying patients using hospice. Previous research has identified several factors associated with hospice use among community-dwelling care recipients regardless of terminal condition. For example, hospice use was more likely among care recipients who were white,5-8 female,5 and older5; had a diagnosis of cancer5,7,9,10; received home health services10; were married; had some college education; owned a home; made a living will; had high levels of social support; or had higher income.7 However, several studies have shown conflicting results regarding which care-recipient factors were associated with hospice use. One study found hospice use more likely among care recipients, unadjusted for type of diagnosis, who were relatively young (<54 years old) or male.7 Another study found hospice use more likely among care recipients, adjusted for cancer type and site, who were unmarried men.8 In brief, care-recipient factors age, gender, and marital status are associated with hospice use but not in a consistent manner. Similarly, several studies have shown conflicting results about whether care-recipient age is a factor associated with hospice use among people with AD. In a previous study using secondary analysis, where national claims and mortality data were examined to determine differences in hospice utilization, results showed that for seven of the 11 cause-of-death categories, the hospice utilization rate was notably lower for the youngest age category (65-74 years) than for the oldest age categories (>74 years).5 For AD, however, hospice utilization decreased considerably with age (55% for 65- to 74-year-olds, 48% for 75- to 84-year-olds, and 36% for those ≥85 years),5 suggesting that older age is negatively associated with hospice use among people with AD. Hospice use and duration thereof are associated with several caregiver factors. Caregivers who are daughters of the care recipients,10 and knowledgeable about hospice,11 were more likely to use hospice. Also, if the hospice user had an informal caregiver, hospice use was longer.10 However, caregivers who were protective of their caregiving role were less likely to use hospice.12 Interestingly, caregivers who had higher depression scores were less willing to even discuss home hospice.13 Although many studies of health services use employ a conceptual framework based on the Behavioral Model of Health Services Utilization (BMHSU),14 a comprehensive health services conceptual framework has not been used for the study of hospice. Without such a framework to provide context, it is difficult to replicate studies, to understand care recipient and caregiver factors associated with hospice use, or to interpret research findings. To address the lack of a conceptual framework, the Behavioral Model of Hospice Use (BMHU) was developed to guide a study of factors associated with hospice use among terminally ill cancer and noncancer patients.6 However, the study was limited to terminally ill patients who had been referred to hospice. More importantly, the framework did not include caregiver factors. Caregiver characteristics were included in the Revised Andersen’s Behavioral Model of Health Services Utilization (RAB) to identify caregiver and care-recipient factors associated with formal service utilization.15 However, the model focused on formal service utilization in the home, community, physician and hospital settings, and not primarily hospice. Moreover, the study population included only Hispanic Americans, limiting the external validity of the study findings. More work is therefore needed to determine if caregiver factors are associated with hospice use among terminally ill patients. The primary purpose of this study was to determine if community characteristics and caregiver characteristics were associated with hospice use at the end of life among people 65 years or older with AD, after controlling for the effect of care-recipient characteristics. That is, we wanted to examine the additional influence of community characteristics and caregiver characteristics on hospice use after care-recipient characteristics were considered. To guide the study, we developed the Hospice Use Model, which incorporates important concepts and predictors of hospice use from previous research into a single health services use model.