Knowing patients' preferences for place of death: how possible or desirable?

Barclay, Stephen; Case-Upton, Steve

doi:10.3399/bjgp09x454052

Cited by 16 publications

(12 citation statements)

References 7 publications

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“…[ 29 ] Some questioned the value of intervention: “Why are we being kept alive?”[ 18 ] Although only a minority wanted life-saving treatment, these were strong preferences but had not been communicated. Although current policy encourages early discussion and documentation of end-of-life care preferences,[ 30 – 32 ] our study and others illustrate how multiple barriers to advance care planning[ 3 ; 8 ; 24 ; 33 ; 34 ] apply also to other relevant options rarely discussed, such as moving into long-term care,[ 35 ] not least how unpredictability and changing contexts may change choices. [ 9 ; 11 ; 14 ; 23 ; 29 ; 36 – 40 ] Others have given thoughtful consideration to the need to recognise that more dying people are following longer frailty trajectories and the implications for care services.…”

Section: Discussion Implications and Conclusionmentioning

confidence: 88%

Death and the Oldest Old: Attitudes and Preferences for End-of-Life Care - Qualitative Research within a Population-Based Cohort Study

et al. 2016

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IntroductionIncreasing longevity means more people will be dying in very old age, but little is known about the preferences of the ‘oldest old’ regarding their care at the end of life.AimsTo understand very old people’s preferences regarding care towards the end of life and attitudes towards dying, to inform policy and practice.MethodsQualitative data collection for n = 42 population-based cohort study participants aged 95–101 (88% women, 42% in long-term-care): topic-guided interviews with n = 33 participants and n = 39 proxy informants, most with both (n = 30: 4 jointly + separate interviews for 26 dyads).ResultsDeath was a part of life: these very old people mainly live day-to-day. Most were ready to die, reflecting their concerns regarding quality of life, being a nuisance, having nothing to live for and having lived long enough. Contrasting views were rare exceptions but voiced firmly. Most were not worried about death itself, but concerned more about the dying process and impacts on those left behind; a peaceful and pain-free death was a common ideal. Attitudes ranged from not wanting to think about death, through accepting its inevitable approach to longing for its release. Preferring to be made comfortable rather than have life-saving treatment if seriously ill, and wishing to avoid hospital, were commonly expressed views. There was little or no future planning, some consciously choosing not to. Uncertainty hampered end-of-life planning even when death was expected soon. Some stressed circumstances, such as severe dependency and others’ likely decision-making roles, would influence choices. Carers found these issues harder to raise but felt they would know their older relatives’ preferences, usually palliative care, although we found two discrepant views.ConclusionsThis study’s rare data show ≥95-year-olds are willing to discuss dying and end-of-life care but seldom do. Formal documentation of wishes is extremely rare and may not be welcome. Although being “ready to die” and preferring a palliative approach predominated, these preferences cannot be assumed.

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Section: Discussion Implications and Conclusionmentioning

confidence: 88%

Death and the Oldest Old: Attitudes and Preferences for End-of-Life Care - Qualitative Research within a Population-Based Cohort Study

et al. 2016

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“…Some patients may have preferences that are not elicited, calling for sensitive communication skills to encourage them to express their views. Others may not wish to express their preference, or may have no preference and this should be respected [ 41 ]. Healthcare professionals, researchers, policy makers and others involved in the care of dying patients need to recognise that not having a preference for place of death is a legitimate opinion which should be recorded in the same way as preferences for specific locations [ 7 ].…”

Section: Discussionmentioning

confidence: 99%

Do Patients Want to Die at Home? A Systematic Review of the UK Literature, Focused on Missing Preferences for Place of Death

et al. 2015

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BackgroundEnd-of-life care policy has a focus on enabling patients to die in their preferred place; this is believed for most to be home. This review assesses patient preferences for place of death examining: the extent of unreported preferences, the importance of patient factors (place of care and health diagnosis) and who reports preferences.Methods and FindingsSystematic literature review of 7 electronic databases, grey literature, backwards citations from included studies and Palliative Medicine hand search. Included studies published between 2000–2015, reporting original, quantifiable results of adult UK preferences for place of death. Of 10826 articles reviewed, 61 met the inclusion criteria. Summary charts present preferences for place of death by health diagnosis, where patients were asked and who reported the preference. These charts are recalculated to include ‘missing data,’ the views of those whose preferences were not asked, expressed or reported or absent in studies. Missing data were common. Across all health conditions when missing data were excluded the majority preference was for home: when missing data were included, it was not known what proportion of patients with cancer, non-cancer or multiple conditions preferred home. Patients, family proxies and public all expressed a majority preference for home when missing data were excluded: when included, it was not known what proportion of patients or family proxies preferred home. Where patients wished to die was related to where they were asked their preference. Missing data calculations are limited to ‘reported’ data.ConclusionsIt is unknown what proportion of patients prefers to die at home or elsewhere. Reported preferences for place of death often exclude the views of those with no preference or not asked: when ‘missing data’ are included, they supress the proportion of preferences for all locations. Caution should be exercised if asserting that most patients prefer to die at home.

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“…This study suggests that while their application may be appropriate for some care home residents, they are not appropriate for all. A professionally driven tick-box approach is to be avoided if care is to be genuinely patient- or resident-centred 36. Residents, family members, NHS practitioners, and care home staff all need to accept that for some residents the trajectory to death will be marked by uncertainty, unpredictability, and ambiguity as to the proximity of death.…”

Section: Discussionmentioning

confidence: 99%

Living in uncertain times: trajectories to death in residential care homes

et al. 2014

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BackgroundOlder people living in care homes often have limited life expectancy. Practitioners and policymakers are increasingly questioning the appropriateness of many acute hospital admissions and the quality of end-of-life care provided in care homes.AimTo describe care home residents’ trajectories to death and care provision in their final weeks of life.Design and settingProspective study of residents in six residential care homes in three sociodemographically varied English localities: Hertfordshire, Essex, and Cambridgeshire.MethodCase note reviews and interviews with residents, care home staff, and healthcare professionals.ResultsTwenty-three out of 121 recruited residents died during the study period. Four trajectories to death were identified: ‘anticipated dying’ with an identifiable end-of-life care period and death in the care home (n = 9); ‘unexpected dying’ with death in the care home that was not anticipated and often sudden (n = 3); ‘uncertain dying’ with a period of diagnostic uncertainty or difficult symptom management leading to hospital admission and inpatient death (n = 7); and ‘unpredictable dying’ with an unexpected event leading to hospital admission and inpatient death (n = 4). End-of-life care tools were rarely used. Most residents who had had one or more acute hospital admission were still alive at the end of the study.ConclusionFor some care home residents there was an identifiable period when they were approaching the end-of-life and planned care was put in place. For others, death came unexpectedly or during a period of considerable uncertainty, with care largely unplanned and reactive to events.

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Knowing patients' preferences for place of death: how possible or desirable?

Cited by 16 publications

References 7 publications

Death and the Oldest Old: Attitudes and Preferences for End-of-Life Care - Qualitative Research within a Population-Based Cohort Study

Death and the Oldest Old: Attitudes and Preferences for End-of-Life Care - Qualitative Research within a Population-Based Cohort Study

Do Patients Want to Die at Home? A Systematic Review of the UK Literature, Focused on Missing Preferences for Place of Death

Living in uncertain times: trajectories to death in residential care homes

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