Access to Hospice Programs in End‐Stage Dementia: A National Survey of Hospice Programs

Abstract

A national survey of hospices revealed that few patients with primary dementia are currently treated by these programs, unless they have other terminal illnesses. An inability to predict survival was the major reason offered to explain this phenomenon. The higher percentage of patients with secondary dementia in hospice suggests that dementia per se does not make hospices care unfeasible. Similarly, the high proportion of for-profit hospices that enrolled patients whose dementia was primary implies the fiscal feasibility of providing hospice care for these patients. Further study is needed concerning the determinants of survival time in end-stage dementia.

Their last 6 months: suffering and survival of end-stage dementia patients

“…This is extremely important because difficulty in estimating survival of end-stage dementia patients is a serious barrier to provision of hospice care to such patients [19][20][21][22].…”

Terminal Care for Persons with Advanced Dementia in the Nursing Home and Home Care Settings

“…18,20,21 Moreover, it is uncommon for persons dying with end-stage dementia to be referred to hospice. 5,[23][24][25] The smaller proportion of hospice referrals in the nursing home may further reflect practical barriers related to contracting hospice services in nursing facilities, or the perception by nursing home staff that additional palliative care expertise is not needed. Hospice services in nursing homes have been shown to improve pain management, promote advance care planning, and reduce the use of invasive treatments.…”

Living Well While Dying

“…Because of the gradually progressive course of dementia, which averages 8 years, the difficulty of making this decision has been an important reason why few individuals with advanced progressive dementia have been referred to hospices so far (Hanrahan & Luchin, 1995). Another cause for delay in referral is the fact that, simply because of the disease, the patient is usually unable to participate in the decision to apply for admission, throwing full responsibility onto family and physician.…”