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.
In examining the narratives of colorectal cancer patients and their carers, we have noted that approval and disapproval are expressed in many ways that reflect their importance in the process of medical care. When people construct free narratives that trace important segments of their biographies, they emphasize the approval and disapproval which others express for their choices, actions and moral qualities. They also want their own approval or disapproval for others to count in significant ways. Approval is widely recognized for its importance in human development, and it is generally a positive force. The seeking of inappropriate approval, however, may have unfortunate consequences. For health professionals, for example, conflicts may arise when they come to seek peer approval ahead of client approval, and when a career comes to matter more than the real social purposes for which the career is intended. Identification of the conflicts that this divided loyalty may induce helps in understanding some of the underlying issues which narratives raise. It is possible to construct a formal structure that can be used to examine the part which the seeking and receiving of approval play in the values expressed in medical narratives generally. Similar and equally powerful meanings attach to disapproval.
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