Barriers to advance care planning in cancer, heart failure and dementia patients: a focus group study on general practitioners’ views and experiences.
Open accessAbstract
BACKGROUND: The long-term and often lifelong relationship of general practitioners (GPs) with their patients is considered to make them the ideal initiators of advance care planning (ACP). However, in general the incidence of ACP discussions is low and ACP seems to occur more often for cancer patients than for those with dementia or heart failure. OBJECTIVE: To identify the barriers, from GPs' perspective, to initiating ACP and to gain insight into any differences in barriers between the trajectories of patients with cancer, heart failure and dementia. METHOD: Five focus groups were held with GPs (n = 36) in Flanders, Belgium. The focus group discussions were transcribed verbatim and analyzed using the method of constant comparative analysis. RESULTS: THREE TYPES OF BARRIERS WERE DISTINGUISHED: barriers relating to the GP, to the patient and family and to the health care system. In cancer patients, a GP's lack of knowledge about treatment options and the lack of structural collaboration between the GP and specialist were expressed as barriers. Barriers that occured more often with heart failure and dementia were the lack of GP familiarity with the terminal phase, the lack of key moments to initiate ACP, the patient's lack of awareness of their diagnosis and prognosis and the fact that patients did not often initiate such discussions themselves. The future lack of decision-making capacity of dementia patients was reported by the GPs as a specific barrier for the initiation of ACP. CONCLUSION: The results of our study contribute to a better understanding of the factors hindering GPs in initiating ACP. Multiple barriers need to be overcome, of which many can be addressed through the development of practical guidelines and educational interventions.
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Clinicians identify multiple barriers to initiating ACP conversations in persons living with dementia, including unpredictable illness trajectory, uncertainty about the right time to commence ACP, lack of time, resources, and knowledge, discomfort with ACP discussions, and difficulty determining the decision-making capacity of the person living with dementia.
“Numerous factors have been identified by clinicians as barriers to initiating ACP conversations in PLwD including unpredictable illness trajectory; uncertainty about the right time to commence the ACP process [10–12]; lack of time, resources, and knowledge; discomfort with ACP discussions [8, 13]; and difficulty in determining the decision-making capacity of the PLwD [14].”
From Acceptability of the voice your values, an advance care planning intervention in persons living with mild dementia using videoconferencing technology (2022) · cites this paper as [12]
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Advance care planning for people living with dementia
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- Authors
- De Vleminck, A., Pardon, K., Beernaert, K., Deschepper, R., Houttekier, D., Van Audenhove, C., Deliens, L., & Vander Stichele, R.
- Affiliations
- Vrije Universiteit Brussel (BE)
- Venue
- PLoS ONE
- Publisher
- Public Library of Science (PLoS)
- Published
- 2014-01-21
- Volume
- 9
- Issue
- 1
- Pages
- e84905
- ISSN
- 1932-6203 (ISSN-L)
- PMC
- PMC3897376
- OpenAlex
- W2070638367
- Cited by
- 209
- References
- 42
- Citations by year
- 2026: 8 · 2025: 12 · 2024: 21 · 2023: 12 · 2022: 24 · 2021: 30 · 2020: 21 · 2019: 24 · 2018: 22 · 2017: 6 · 2016: 17 · 2015: 9 · 2014: 3
- FWCI
- 11.61
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- Locations
- PLoS ONE (publishedVersion, cc-by)
- Europe PMC (PubMed Central) (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- Pure Amsterdam UMC (publishedVersion)
- Amsterdam UMC (VU Amsterdam) - Institutional Repository (publishedVersion)
- Ghent University Academic Bibliography (Ghent University) (submittedVersion, other-oa)
- Lirias (KU Leuven) (submittedVersion, other-oa)
- DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
- VUBIR (Vrije Universiteit Brussel) (submittedVersion)
- Data Archiving and Networked Services (DANS) (submittedVersion, other-oa)
- Data Archiving and Networked Services (DANS) (submittedVersion)
- Funders
- Vrije Universiteit Amsterdam
- Agentschap voor Innovatie door Wetenschap en Technologie (100036)
- Vlaamse regering
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Health Sciences › Health Professions › General Health Professions › Patient-Provider Communication in Healthcare
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative and Oncologic Care
- Keywords
- advance care planning, barriers to advance care planning, general practitioners, cancer patients, heart failure, dementia, GP-patient relationship, terminal phase, decision-making capacity, prognosis awareness, end-of-life care
- MeSH terms
- Adult, Aged, Attitude of Health Personnel, Belgium, Dementia, Female, Heart Failure, Humans, Health Knowledge, Attitudes, Practice, Male, Middle Aged, Neoplasms, Physician-Patient Relations, Practice Patterns, Physicians', Focus Groups, Guidelines as Topic, Advance Care Planning, General Practitioners
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