Social and clinical determinants of preferences and their achievement at the end of life: prospective cohort study of older adults receiving palliative care in three countries

Abstract

BackgroundAchieving choice is proposed as a quality marker. But little is known about what influences preferences especially among older adults. We aimed to determine and compare, across three countries, factors associated with preferences for place of death and treatment, and actual site of death.MethodsWe recruited adults aged ≥65-years from hospital-based multiprofessional palliative care services in London, Dublin, New York, and followed them for >17 months. All services offered consultation on hospital wards, support for existing clinical teams, outpatient services and received funding from their National Health Service and/or relevant Insurance reimbursements. The New York service additionally had 10 inpatient beds. All worked with and referred patients to local hospices. Face-to-face interviews recorded most and least preferred place of death, treatment goal priorities, demographic and clinical information using validated questionnaires. Multivariable and multilevel analyses assessed associated factors.ResultsOne hundred and thirty eight older adults (64 London, 59 Dublin, 15 New York) were recruited, 110 died during follow-up. Home was the most preferred place of death (77/138, 56%) followed by inpatient palliative care/hospice units (22%). Hospital was least preferred (35/138, 25%), followed by nursing home (20%) and home (16%); hospice/palliative care unit was rarely least preferred (4%). Most respondents prioritised improving quality of life, either alone (54%), or equal with life extension (39%); few (3%) chose only life extension. There were no significant differences between countries. Main associates with home preference were: cancer diagnosis (OR 3.72, 95% CI 1.40–9.90) and living with someone (OR 2.19, 1.33–3.62). Adults with non-cancer diagnoses were more likely to prefer palliative care units (OR 2.39, 1.14–5.03). Conversely, functional independence (OR 1.05, 1.04–1.06) and valuing quality of life (OR 3.11, 2.89–3.36) were associated with dying at home. There was a mismatch between preferences and achievements – of 85 people who preferred home or a palliative care unit, 19 (25%) achieved their first preference.ConclusionAlthough home is the most common first preference, it is polarising and for 16% it is the least preferred. Inpatient palliative care unit emerges as the second most preferred place, is rarely least preferred, and yet was often not achieved for those who wanted to die there. Factors affecting stated preferences and met preferences differ. Available services, notably community support and palliative care units, require expansion. Contrasting actual place of death with capacity for meeting patient and family needs may be a better quality indicator than simply ‘achieved preferences’.Electronic supplementary materialThe online version of this article (10.1186/s12877-017-0648-4) contains supplementary material, which is available to authorized users.

Associations between informal care costs, care quality, carer rewards, burden and subsequent grief: the international, access, rights and empowerment mortality follow-back study of the last 3 months of life (IARE I study)

“…Participating palliative care services in London (England), Dublin (Ireland), New York and San Francisco (USA) were as follows: established hospital palliative care consulting teams in all countries, a hospital-based community outreach team in London and an inpatient palliative care ward in New York. Details of the participating services are found elsewhere [ 19 , 23 , 24 ].…”

“…Informal time spent caring was counted with the Client Service Receipt Inventory (CSRI) [ 19 , 23 ], by asking respondents to document all IC time spent by family and friends as well as the respondents during the last 3 months of the patient’s life. Six questions covered a wide range of possible physical, social, emotional and other caring activities, including time spent ‘on call’ and being available for the patient (Additional file 1 : Table S1).…”

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“…Place of death is an important issue to consider for end‐of‐life care. Generally, many patients prefer to stay at home at the end stages of life . Recent studies have shown that dying at home achieves good death in terminally ill cancer patients without increasing caregiver burden .…”

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