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Review
. 2018 Jun 21;17(1):88.
doi: 10.1186/s12904-018-0332-2.

Advance care planning in dementia: recommendations for healthcare professionals

Ruth Piers  1   2 , Gwenda Albers  3 , Joni Gilissen  4   5 , Jan De Lepeleire  6 , Jan Steyaert  7   8 , Wouter Van Mechelen  6 , Els Steeman  9 , Let Dillen  1 , Paul Vanden Berghe  3 , Lieve Van den Block  10   11
Affiliations
Review

Advance care planning in dementia: recommendations for healthcare professionals

Ruth Piers et al. BMC Palliat Care. .

Abstract

Background: Advance care planning (ACP) is a continuous, dynamic process of reflection and dialogue between an individual, those close to them and their healthcare professionals, concerning the individual's preferences and values concerning future treatment and care, including end-of-life care. Despite universal recognition of the importance of ACP for people with dementia, who gradually lose their ability to make informed decisions themselves, ACP still only happens infrequently, and evidence-based recommendations on when and how to perform this complex process are lacking. We aimed to develop evidence-based clinical recommendations to guide professionals across settings in the practical application of ACP in dementia care.

Methods: Following the Belgian Centre for Evidence-Based Medicine's procedures, we 1) performed an extensive literature search to identify international guidelines, articles reporting heterogeneous study designs and grey literature, 2) developed recommendations based on the available evidence and expert opinion of the author group, and 3) performed a validation process using written feedback from experts, a survey for end users (healthcare professionals across settings), and two peer-review groups (with geriatricians and general practitioners).

Results: Based on 67 publications and validation from ten experts, 51 end users and two peer-review groups (24 participants) we developed 32 recommendations covering eight domains: initiation of ACP, evaluation of mental capacity, holding ACP conversations, the role and importance of those close to the person with dementia, ACP with people who find it difficult or impossible to communicate verbally, documentation of wishes and preferences, including information transfer, end-of-life decision-making, and preconditions for optimal implementation of ACP. Almost all recommendations received a grading representing low to very low-quality evidence.

Conclusion: No high-quality guidelines are available for ACP in dementia care. By combining evidence with expert and user opinions, we have defined a unique set of recommendations for ACP in people living with dementia. These recommendations form a valuable tool for educating healthcare professionals on how to perform ACP across settings.

Keywords: Advance care planning; Alzheimer’s disease; Dementia; Elderly care; Guideline; Recommendations.

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Conflict of interest statement

Competing interest

The authors declare that they have no competing interests.

Ethics approval and consent to participate

The ethical committees approved the study and stated that it does not fall under the scope of the Belgian Law of 7 May 2004 on experiments on the human person (http://www.ejustice.just.fgov.be/cgi_loi/loi_a1.pl?language=nl&la=N&table_name=wet&cn=2004050732&&caller=list&N&fromtab=wet&tri=dd+AS+RANK&rech=1&numero=1&sql=(text+contains+(%27%27))#LNK0008). The voluntary nature of the study was explained in the cover letter which was sent out to all experts and end-users. We considered receiving a response as consent given.

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Figures

Fig. 1
Fig. 1
PRISMA flow diagram of the study screening, eligibility, selection and inclusion process ACP advance care planning; G-I-N Guidelines International Network; NHS National Health Service; NGC National Guideline Clearinghouse; NZGG New Zealand Guidelines Group; TRIP Trip medical database; MeSH Medical Subject Headings; AGREE Appraisal of Guidelines for Research and Evaluation
See this image and copyright information in PMC

References

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