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Managing 'shades of grey': a focus group study exploring community-dwellers' views on advance care planning in older people.
BMC Palliat Care. 2017 Jan 13; 16(1):2.BP

Abstract

BACKGROUND

Community-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.

METHODS

Qualitative 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.

RESULTS

Eight 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.

CONCLUSIONS

Advance 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.

Authors+Show Affiliations

Palliative Care Research Department, Cabrini Institute, 154 Wattletree Road, Malvern, VIC, 3144, Australia. nmichael@cabrini.com.au. School of Medicine, University of Notre Dame Australia, 160 Oxford Street, Sydney, NSW, 2010, Australia. nmichael@cabrini.com.au. Faculty of Medicine, Nursing and Health Sciences, Monash University, Melbourne, VIC, 3800, Australia. nmichael@cabrini.com.au.Palliative Care Research Department, Cabrini Institute, 154 Wattletree Road, Malvern, VIC, 3144, Australia. Department of Medicine, St Vincent's Hospital, The University of Melbourne, 41 Victoria Street, Fitzroy, VIC, 3065, Australia.Optimal Care Pathway, Royal Children's Hospital, 50 Flemington Rd, Parkville, VIC, 3052, Australia.

Pub Type(s)

Journal Article

Language

eng

PubMed ID

28086861

Citation

Michael, Natasha, et al. "Managing 'shades of Grey': a Focus Group Study Exploring Community-dwellers' Views On Advance Care Planning in Older People." BMC Palliative Care, vol. 16, no. 1, 2017, p. 2.
Michael N, O'Callaghan C, Sayers E. Managing 'shades of grey': a focus group study exploring community-dwellers' views on advance care planning in older people. BMC Palliat Care. 2017;16(1):2.
Michael, N., O'Callaghan, C., & Sayers, E. (2017). Managing 'shades of grey': a focus group study exploring community-dwellers' views on advance care planning in older people. BMC Palliative Care, 16(1), 2. https://doi.org/10.1186/s12904-016-0175-7
Michael N, O'Callaghan C, Sayers E. Managing 'shades of Grey': a Focus Group Study Exploring Community-dwellers' Views On Advance Care Planning in Older People. BMC Palliat Care. 2017 Jan 13;16(1):2. PubMed PMID: 28086861.
* Article titles in AMA citation format should be in sentence-case
TY - JOUR T1 - Managing 'shades of grey': a focus group study exploring community-dwellers' views on advance care planning in older people. AU - Michael,Natasha, AU - O'Callaghan,Clare, AU - Sayers,Emma, Y1 - 2017/01/13/ PY - 2016/09/07/received PY - 2016/12/09/accepted PY - 2017/1/15/entrez PY - 2017/1/15/pubmed PY - 2017/2/22/medline KW - Advance care planning KW - Aged KW - Caregivers KW - Community health services KW - Qualitative research SP - 2 EP - 2 JF - BMC palliative care JO - BMC Palliat Care VL - 16 IS - 1 N2 - BACKGROUND: Community-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. METHODS: Qualitative 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. RESULTS: Eight 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. CONCLUSIONS: Advance 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. SN - 1472-684X UR - https://www.unboundmedicine.com/medline/citation/28086861/Managing_'shades_of_grey':_a_focus_group_study_exploring_community_dwellers'_views_on_advance_care_planning_in_older_people_ L2 - https://bmcpalliatcare.biomedcentral.com/articles/10.1186/s12904-016-0175-7 DB - PRIME DP - Unbound Medicine ER -