Abstract
BackgroundCommunity-dwelling consumers of healthcare are increasing, many aging with life-limiting conditions and deteriorating cognition. However, few have had advance care planning discussions or completed documentation to ensure future care preferences are acted upon. This study examines the awareness, attitudes, and experiences of advance care planning amongst older people and unrelated offspring/caregivers of older people residing in the community.MethodsQualitative descriptive research, which included focus groups with older people (55+ years) and older people’s offspring/caregivers living in an Australian city and surrounding rural region. Data was analysed using an inductive and comparative approach. Sampling was both convenience and purposive. Participants responded to web-based, newsletter or email invitations from an agency, which aims to support healthcare consumers, a dementia support group, or community health centres in areas with high proportions of culturally and linguistically diverse community-dwellers.ResultsEight focus groups were attended by a homogenous sample of 15 older people and 27 offspring/caregivers, with 43% born overseas. The overarching theme, ‘shades of grey’: struggles in transition, reflects challenges faced by older people and their offspring/caregivers as older people often erratically transition from independence and capacity to dependence and/or incapacity. Offspring/caregivers regularly struggled with older people’s fluctuating autonomy and dependency as older people endeavoured to remain at home, and with conceptualising “best times” to actualise advance care planning with substitute decision maker involvement. Advance care planning was supported and welcomed, x advance care planning literacy was evident. Difficulties planning for hypothetical health events and socio-cultural attitudes thwarting death-related discussions were emphasised. Occasional offspring/caregivers with previous substitute decision maker experience reported distress related to their decisions.ConclusionsAdvance care planning programs traditionally assume participants are ‘planning ready’ to legally appoint a substitute decision maker (power of attorney) and record end-of-life treatment preferences in short time frames. This contrasts with how community dwelling older people and offspring/caregivers conceive future care decisions over time. Advance care planning programs need to include provision of information, which supports older people’s advance care planning understanding and management, and also supports offspring/caregivers’ development of strategies for broaching advance care planning with older people, and preparing for potential substitute decision maker roles. Development and integration of strategies to support older people’s decision-making when in the ‘grey zone’, with fluctuating cognitive capacities, needs further consideration. Findings support an advance care planning model with conversations occurring at key points across a person’s lifespan.
Highlights
Community-dwelling consumers of healthcare are increasing, many aging with life-limiting conditions and deteriorating cognition
Advance care planning programs traditionally assume participants are ‘planning ready’ to legally appoint a substitute decision maker and record end-of-life treatment preferences in short time frames. This contrasts with how community dwelling older people and offspring/caregivers conceive future care decisions over time
Initial adverse impacts of these diseases mostly originate in community settings, requiring community-dwelling older people (OP), their families, and caregivers to be increasingly involved in healthcare decision-making
Summary
Community-dwelling consumers of healthcare are increasing, many aging with life-limiting conditions and deteriorating cognition. Community care is defined as providing the right level of intervention and support to enable people to achieve maximum independence and control over their lives [1]. This is relevant to the increasing number of older people (OP) living in the community. Healthcare strategies incorporating quality initiatives for chronic diseases and end-of-life (EOL) care in the last year of a patient’s life emphasise the need for engagement in advance care planning (ACP) [3]. Further benefits include improved patient satisfaction, quality of life, survivors’ mood and adjustment, earlier hospice admissions [7, 8], and fewer hospitalizations from nursing homes [9]
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