What influences decisions around the place of care for terminally ill cancer patients?

Abstract

For many, the preference for place of care at the end of life was conditional on how the process of their disease advanced. It was not a clear and positive choice, but it did include the desire to be cared for in a place other than home. Carer availability and ability were influencing factors; however, decisions reflected the patient's perceptions of resources rather than those of the carer, even when the carer was available and able. The challenge to those who work with the terminally ill is to develop effective interventions to facilitate discourses around end-of-life care, and thereafter, where possible, to facilitate those preferences.

The location of surgical care for rural patients with rectal cancer: patterns of treatment and patient perspectives

“…Previous qualitative studies have reported that health care professionals often do not involve patients in important treatment decisions. 24 Some patients may not want an active role and are more than willing to let their doctors select their care providers. 25,26 Other patients may be too overwhelmed, especially when given the cancer diagnosis, to process all the information and ask questions about the referral process.…”

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

“…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.…”

“…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.…”

“…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. 5,65,69,74,76,78,81,82,107,125,133,181 Indeed, the desire to makes things easier for family members is stated to be one of the principal reasons for patients to engage in ACP.…”