Older people's views about home as a place of care at the end of life

Abstract

Older people perceive factors they associate with 'home' as crucial to a good death, most notably presence of friends and family, but many anticipate that they would prefer to be cared for elsewhere when dying. These findings run counter to assumptions that the medicalised, institutional death cannot be a 'good death'. It is important that dying in hospital is not demonized, but rather efforts made to examine how institutional deaths can take on a more meaningful quality.

Care and communication between health professionals and patients affected by severe or chronic illness in community care settings: a qualitative study of care at the end of life

“…Patients are pragmatic, also, about their options and how these depend on the circumstances that materialise. 6,22,43,50,51,[67][68][69][70][71][72][73] Running like a leitmotif throughout the literature is that patients strongly desire not to impose a burden of care on their family members 5,22,69,[73][74][75][76][77][78][79] and it is evident that most people depend on the availability and willingness of informal carers to support their ability to die at home. 69,73,80 As the population ages, increasing numbers of the very old live alone and may not have carers available to help.…”

“…However, dying alone is generally regarded as a very bad outcome, and for most patients it is not an acceptable option. 77,81,82 Death at home is frequently portrayed as a core component, perhaps even a prerequisite, for achieving a 'good death', in contrast to the impersonal, institutional and medicalised environment of the hospital. However, recent evidence suggests that control of pain and not being a burden are the important priorities for patients and the public.…”

“…The findings of qualitative studies question the assumption that 'home is best' in relation to good-quality EOLC. 68,77,86 In the face of conflicting and uncertain evidence, it is important to establish a better understanding of how patients and caregivers develop their preferences, the role of health professionals in shaping these, the salience of choice and the importance patients attach to place of death. 69,74 The initiation of advance care planning Advance care planning involves discussion of difficult issues that may be distressing to all participants.…”

“…22,59,66,69,142,180 The focus on place has deflected attention from how death is experienced in different settings. 69,72,73,77,179 Patients tend to adopt a pragmatic stance to place of death. Home might be preferred in principle, but that preference over-ridden by contextual factors, 67,69 and hospital is not necessarily dispreferred.…”

“…Home might be preferred in principle, but that preference over-ridden by contextual factors, 67,69 and hospital is not necessarily dispreferred. 69,[72][73][74]77,86 Some carers may not want their relative to die at home. 73 There is consistent evidence that the key priority for patients is control of pain, followed by not imposing a burden on family members.…”