Advance care planning in dementia: recommendations for healthcare professionals

Abstract

BackgroundAdvance 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.MethodsFollowing 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).ResultsBased 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.ConclusionNo 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.

Attitudes and Behaviors of Elderly Individuals Towards End-of-Life Decisions

“…It was also found that male participants between the ages of 65 and 74, with social security and a university education or above considered that the physician should inform them about their diseases even if their family didn't want this information to be disclosed to them (Table 2, Situation 1.3). Similar to our findings, when we look at other studies in the literature, we see that married elderly people with high educational level and above average income status want to play an active role in end-of-life treatment and care decisions, and think that the medical diagnosis should be told to them as it will create a pressure and burden on family members and spouses (5,17,19). On the other hand, regarding the practices in some Middle Eastern countries, it is known that undesirable diagnosis is reported to the family and then to the patient in Iran, and the family decides to tell the diagnosis to the patient (20).…”

“…Furthermore, it's also true that participation of elderly individuals in medical decisions isn't at the desired level even if they don't have mental problems. Families ask physicians to tell them the diagnosis first (4,5). However, Article 24 of the Patient Rights Regulation in our country requires the consent of the patient in medical interventions and it is essential for the patient to know its illness (6).…”

Shared decision-making in advance care planning for persons with dementia in nursing homes: a cross-sectional study

“…Regarding the need for more information on ACP, our results indicate that professionals still seem to consider ACP a topic to be discussed during crisis situations, with much less emphasis on exploring daily care preferences. This is in contrast with evidence-based recommendations [36]. Finally, our study sample shows that a wide range of health professionals is involved in ACP.…”

Development and testing of an informative guide about palliative care for family caregivers of people with advanced dementia

“…In the advanced stages of dementia, as well as at end of life, it is often necessary to make significant medical treatment decisions such as tube feeding, hospital admissions, intensive care treatment, intravenous antibiotic administration, intravenous hydrogenation, or cardiopulmonary resuscitation. Since people with advanced dementia are no longer able to make complex decisions [6], the close relatives, as proxies, usually have to decide on treatments and interventions or -if indicated -their termination. These decisions are based on the person's living will, if it is precise enough, or the person's presumed will.…”