Influences on Care Preferences of Older People with Advanced Illness: A Systematic Review and Thematic Synthesis

Abstract

ObjectivesTo determine and explore the influences on care preferences of older people with advanced illness and integrate our results into a model to guide practice and research.DesignSystematic review using Medline, Embase, PsychINFO, Web of Science, and OpenGrey databases from inception to February 2017 and reference and citation list searching. Included articles investigated influences on care preference using qualitative or quantitative methodology. Thematic synthesis of qualitative articles and narrative synthesis of quantitative articles were undertaken.SettingHospital and community care settings.ParticipantsOlder adults with advanced illness, including people with specific illnesses and markers of advanced disease, populations identified as in the last year of life, or individuals receiving palliative care (N = 15,164).MeasurementsThe QualSys criteria were used to assess study quality.ResultsOf 12,142 search results, 57 articles were included. Family and care context, illness, and individual factors interact to influence care preferences. Support from and burden on family and loved ones were prominent influences on care preferences. Mechanisms by which preferences are influenced include the process of trading‐off between competing priorities, making choices based on expected outcome, level of engagement, and individual ability to form and express preferences.ConclusionFamily is particularly important as an influence on care preferences, which are influenced by complex interaction of family, individual, and illness factors. To support preferences, clinicians should consider older people with illnesses and their families together as a unit of care.

Perspectives of Patients in Identifying Their Values‐Based Health Priorities

“…These data suggest that patients may view their health priorities as influenced by the views, and potentially the health priorities, of their caregivers and others. This finding aligns with past reports of factors that influence care preferences among older adults 20 and underscores the importance of caregiver participation in the PHPI. Avenues for additional research may involve the use of a patient-caregiver dyadic approach to healthcare goals and priorities facilitation.…”

Reassessing advance care planning in the light of covid-19

“…Such conversations help to shape a jointly constructed life story that gives meaning and context to decisions and informs ongoing person centred care 10. The importance of this approach to older people is shown by their high prioritisation of not being a burden to family, a goal that the process of advance care planning can help to achieve 11. Thus individuals do not act alone; rather, they consider the priorities and concerns of those around them 51012.…”

Care preferences of healthy, middle‐aged adults in Japan and the USA if they acquired dementia: A cross‐sectional observational study

“…The trajectory for dementia, in contrast, is a gradual decline accompanied by progressive cognitive decline . Although older adults and terminally ill patients usually report preferring to die in their own homes, in regard to dementia, older adults also prioritize safety and supervision because of the impaired decision‐making capacity and behavioral changes associated with the condition . As many general practitioners are struggling to obtain the resources to address the behaviors and symptoms of dementia, middle‐aged adults might suppose that professional home care services are inadequate for people with dementia who require regular supervision .…”

“…People of this age are most likely to be providing caregiving to their parents or partners, or to be doing so in the near future. Their care preferences are influenced by care‐related burdens on family members and loved ones . To avoid such family care burdens, older adults preferred nursing home care if they had acquired dementia .…”

“…Their care preferences are influenced by care-related burdens on family members and loved ones. 9 To avoid such family care burdens, older adults preferred nursing home care if they had acquired dementia. 10 Characteristics of the Japanese ethnic cultures would increase the patients' tendencies to avoid family burdens and to prefer nursing home care, as Japanese residents and Japanese Americans share a longstanding tradition of family caregiving.…”