Advance care planning in dementia: recommendations for healthcare professionals

A multidisciplinary group of authors was assembled to develop the recommendations: a research coordinator, a geriatrician, two GPs, an expert in dementia care, a nurse, two psychologists and the director of the Flanders Federation for Palliative Care. Collectively, they have extensive experience in palliative, primary and dementia care in different settings in Flanders (Belgium). Based on their own experience and obstacles they have encountered in practice, this author group formulated clinical research questions related to ACP in people with dementia. Obstacles are defined as those areas in the ACP process that cause ACP not to be initiated at the appropriate time or not to be performed at all. The clarity, applicability and completeness of each clinical research question was evaluated in semi-structured interviews by SM and DN with 28 GPs, of whom 14 also act as coordinating advisory physicians or CAPs in a nursing home and of whom 14 are heads of residential care, all from different nursing homes in Flanders and all familiar with the concept and practice of ACP. Through discussion and consensus within the team of authors, these were categorized to six main clinical themes to guide the literature search (see Table 1).

We undertook a stepwise approach to search the scientific literature for evidence about ACP in people with dementia related to the six selected clinical themes. Publications were included if (i) they were published in Dutch, French, English or German, (ii) their main theme was ACP in people with dementia, or, if a guideline, ACP was included in the goals, or was one of the outcome recommendations. Publications were excluded if ACP in people with dementia was not the focus of the article. Meta-analyses and systematic reviews were excluded if they were published before 2004, to avoid including publications that approach ACP too narrowly. The authors believe that the majority of publications only started defining ACP from 2004 onward as a more comprehensive process that is not limited to advance directives [27].

The search consisted of three steps to identify relevant 1) international guidelines, 2) systematic reviews and meta-analysis and 3) primary studies (randomised controlled trials and observational research). Search terms and a PRISMA flowchart are provided in Fig. 1. The quality assessment procedure is described below.

The quality of the guidelines and systematic reviews and/or meta-analyses was independently checked by pairs of authors against the Appraisal of Guidelines Research and Evaluation (AGREE II) instrument [28] for guidelines and a checklist to assess the methodological quality of systematic reviews [29], as recommended by CEBAM and Cochrane Netherlands [30‐35]. The AGREE II instrument is an international 23-item tool to assess the quality and reporting of practice guidelines that is organised into six domains. All items are rated on a 7-point scale (1 ‘strongly disagree’ – 7 ‘strongly agree’). The checklist used for assessment of systematic reviews was developed by Cochrane Netherlands (http://​netherlands.​cochrane.​org; only available in Dutch). It has been shortened by the authors. It now consists of 12 ‘yes – no – cannot answer/too little information in the paper’ questions, organised into three categories: validity, importance and applicability. Questions for assessment include: 1) Was the search request adequately formulated? 2) Was the search performed adequately? 3) Was the selection procedure for the articles performed adequately? 4) Was the quality assessment performed adequately? 5) Is the description of how the data extraction was organised adequate? 6) Were the most important characteristics of the included research reported? 7) Was the meta-analysis carried out appropriately? 8) Is there statistical pooling? 9) Is the research valid? 10) Are the results adequately described? 11) Are the findings applicable in the region? 12) Is this applicable in daily practice? (translation by authors). The quality score is the number of times ‘yes’ was applied to the questions (1 ‘low quality’ - 12 ‘high quality’). As specified by the CEBAM procedure, we would have followed the scientific process of the ADAPTE procedure when the AGREE assessment was performed, to adapt useful guidelines to the local context through a process that can be found elsewhere [31‐35]. However, none of the guidelines met these criteria and because of the limited number of systematic reviews on ACP and dementia the authors decided to include other primary studies (randomised controlled trials and observational research), opinion pieces and grey literature as well. An overview of all included publications is provided in Table 2.

Start ACP as early as possible and integrate ACP into the daily care of people living with dementia, ideally before diagnosis or any cognitive decline [9, 25, 37‐42]. Preferably, ACP should be performed on several occasions. These conversations can vary from short to lengthy discussions depending on how the person with dementia feels and how much time there is. They can be planned or occur spontaneously when the opportunity arises [23, 37‐41, 43]. There are several key triggers for ACP conversations identified in the literature: admission to a nursing home, initiation of palliative care, deterioration of the condition or upon request. Specifically for dementia, key moments might be the period around diagnosis [38, 44], while discussing the overall general care plan and/or when changes occur in health status, place of residence or financial situation [45]. Be alert for triggers and opportunities to start ACP and make use of any opportunity to talk about ACP [46, 47]. Given the fluctuating cognitive capacities of people with dementia it is important to make use of spontaneous opportunities.

Because research has shown that ACP conversations are not often initiated by the person living with dementia him/herself, healthcare professionals should initiate them unless the person and/or those close to them do this [37, 45‐47]. Although GPs play an important role, all healthcare professionals can be involved in discussing elements of ACP [46, 47] according to their own skills [37, 45‐47]. It is important to have a trusting relationship with the person and those close to them, to have some knowledge of the disease trajectory [37, 48] and to communicate with the GP.

Each individual patient and situation is different. Hence, when starting ACP conversations, one needs to consider the person as an individual and consider their specific situation [43, 49].

When performing ACP with people living with dementia, their mental capacity should be considered. However, a diagnosis of dementia should not automatically be equated with loss of mental capacity. Healthcare professionals should consider the following principles:

Always assume full mental capacity [50, 51] and regard it as a fluctuating, not static, condition situated on a continuum [52]. Stay alert for signals of loss of mental capacity. Judge mental capacity task-specifically as the capacity for making a certain decision at a particular moment [9, 50, 51]. Always stay in contact with the person him−/herself to ensure maximal participation [1]. A formal clinical assessment (including substantive clinical and neuropsychological examinations [53]) is only necessary in case of doubt or disagreement between healthcare professionals and/or those close to the person, or when decisions can have far-reaching consequences, and should then preferably be performed by a multidisciplinary team with expertise in dementia. To be able to hold ACP conversations with people with dementia, a general clinical judgment of mental capacity as part of the conversation usually suffices. Available tools for making general clinical judgments of mental capacity are the MacArthur Competence Assessment Tool [54], the Vignette method [55] or the flow chart guide from Church et al. [56].

In people with dementia, cognitive activity and abstract thinking – abilities which are needed to think about the future – can become difficult, even in mild cases [42]. Moreover, people with dementia are likely to live in the present and thinking about the future may cause fear or anxiety. This does not preclude ACP but does make ACP conversations more difficult [21, 57, 58]. To facilitate ACP conversations with people with dementia, the following recommendations apply:

When engaging in a conversation with a person who has mild/moderate dementia, adjust the communication style and content to their own level and rhythm [59], taking into account the principles of person-centred care [60].

Find out who are the significant people in their life, people who may be able to be involved in the ACP conversations, and who may be able to become their surrogate decision-makers (if not yet appointed), while explaining that these are people who can legally be appointed to act on behalf of a patient when s/he is no longer capable [47, 52, 61].

Lead the conversation but do not make it too phased, despite the fact that ACP is often described in such a way [59]. Because of a lack of disease awareness, decreasing decision-making ability and imaginative capacity and decreasing ability to process new information, it will often not be possible to follow a prescribed structure [25, 43, 62]. Supporting materials, if necessary and available, can be helpful (e.g. applications, books, etc.).

Explore the person’s disease awareness and his/her expectations, ideas and possible misconceptions concerning the disease trajectory [5]. It is important to provide a balanced view of what living with dementia may entail.

If someone lacks disease awareness or is reluctant to talk about ACP, do not insist [42, 63]. It is important for people to decide their own information preferences. However, even if disease awareness is lacking, it remains important to explore someone’s general values and concerns as part of the ACP process [9, 64].

ACP conversations are best held on several occasions over a period of time [37, 42, 45]. They can cover several different topics: the person’s more general values, their experience of the present and fears about the future and the end of life, their future care goals, their specific advance decisions about the end of life and advance directives.

Learn to know who the person living with dementia is ‘as a whole person’: explore their life story and most important values, norms, ideas and preferences in order to understand who the person is, what the significant events in their life have been and what gives their life meaning [15, 25, 37, 45].

Explore people’s current experiences in terms of quality of life, fears and concerns. ACP is not only about exploring the future, but includes a focus on the past and the present [4, 22, 63, 65]. Explore the person’s fears and concerns for the future and for the end of life [42, 63].

If possible and desirable, guide the person in formulating his/her care goals [8, 49, 66, 67] i.e. prolonging life, preserving function or control, optimal comfort, improving quality of life, a ‘good death’ or support from those close to them [67, 68]. Be aware that such care goals can change throughout the disease trajectory [58, 69, 70].

If possible and desirable, guide the person in formulating specific wishes concerning specific end-of-life decisions [45]. Most people with dementia do not die suddenly. Often medical decisions with regard to the provision of antibiotics, hospital admission in case of urgent health problems, resuscitation and artificial fluids are relevant [2, 71, 72]. Provide the necessary information about different possible end-of-life decisions in dementia (e.g. non-treatment decisions), and prevent misconceptions with regard to the use of resuscitation [73‐76], artificial food and fluids [77] and antibiotics near the end of life [78‐80].

Explore whether the person would like to complete an advance directive or whether s/he has done so in the past [45]. It is important to stipulate that documenting wishes formally can be relevant for people living with dementia, especially those who don’t have any close family or those who value being in control. However, professionals should be aware that in some situations, advance directives might not be specific enough to fully inform the decision-making process. Documented wishes will help guide end-of-life decision-making for physicians, other care professionals and those close to the person, and they will be most helpful if they are the result of a continuous and in-depth communication process.

These recommendations are mainly applicable to people who have mild or moderate dementia, with whom verbal communication is still possible. Part 5 focuses more on people with dementia who find it difficult or impossible to communicate verbally.

Because of the gradual loss of mental capacity in people living with dementia - more than in other diseases - they are often dependent on other people [81]. Family or significant others should preferably be involved as early as possible in the ACP process and be informed about the role of a surrogate decision-maker [9, 25, 40]. As part of the ACP process, it will be important to determine who can be involved in ACP conversations, but it can be difficult to determine when to involve them and how many people to involve. If a legal representative is appointed, they should be involved in ACP conversations [82]. If there is no legal representative, it will be useful to consider who will be the first point of contact for professionals, and how information is transferred among other family members. Every family is unique, so the involvement of family and those close to the person with dementia should be evaluated on a case-by-case basis, along with the person with dementia themselves.

Evaluate the disease awareness of those close to the person and inform them of the expected disease trajectory and possible end-of-life decisions [15, 23, 43, 83, 84]. The information preferences of those close to the person with dementia should also be explored. Make sure the information about the disease trajectory is correct and make sure it is balanced and qualified. In many cases the person with dementia does not experience his/her disease as something ‘negative’ in the way that the family does [82, 85].

Pay attention to the needs of those close to the person during the ACP process [9, 25, 63, 65, 86]. Sufficient support, education and information are important, as is addressing the concerns, experiences, expectations and fears of the family. Family can be unprepared or feel guilty [87]. Pay attention to the emotional process of family members and consider that family dynamics might change over time. It is not always easy to harmonise the views of those close to the person with dementia.

In moderate/severe dementia, where verbal communication is difficult or no longer possible, formulating care goals or specific care preferences is difficult. Keep a connection with the person with dementia and ensure their maximum participation [1, 42]. Respond to their emotions, attend to non-verbal communication and observe behaviour to understand more about their current quality of life, fears and desires [63]. People’s emotions can give direction to the decision-making process [42]. Subsequently, actively involve family or other close people in the ACP process and the expression of care goals and wishes concerning end-of-life decisions [9, 25, 83] to get an understanding of the life story of the person with dementia and to interpret certain aspects of their behaviour or emotions.

After every planned or unplanned ACP discussion, healthcare professionals should write down the outcome in the patient’s medical/care files, e.g. the values, wishes or care goals of the person and, where relevant, details of an advance directive or legal representative [25, 88, 89]. If the person wishes, support them in formulating specific wishes and advance decisions concerning the end of their life, explore whether they have made a formal written advance directive in the past or if they want to make one now [45] and provide information about the advantages and disadvantages of advance directives [2, 71]. It is recommended that ACP documentation is evaluated regularly as part of the ACP process, for example in anticipation of a ‘response shift’ [15, 25, 40, 47, 70]. Decisions can be revised at all times.

The outcomes of the ACP process should be communicated within the care team, i.e. values, preferences and care goals and any advance directives or legal representatives, particularly upon transfer to another care setting. This can be done verbally or in writing. Make sure relevant information is available to other care providers in the shared sections of the care file or is easily accessible when needed, especially upon transfer to another care setting. Information sharing should always take professional confidentiality into account [66].

Despite all good intentions, ACP cannot anticipate all possible scenarios. The disease trajectory is not always predictable and the emotional burden on those close to the person with dementia can often lead to a certain amount of confusion and lack of clarity about providing care. When end-of-life decisions need to be made, it is important to weigh carefully the wishes expressed and/or written down earlier against the current best interest of the person living with dementia, in consultation with the person’s close circle and the healthcare professionals involved [84, 90, 91]. End-of-life decision-making entails shared decision-making and as much consensus amongst healthcare providers and those close to the person as possible [84, 90, 91]. Materials such as the Framework for Weighing Previously Expressed Preferences v. Best Interest can support professionals and family in making these decisions, by asking questions such as: ‘is the clinical situation an emergency that allows no time for deliberation?’, ‘in view of the person’s values and goals, how likely is it that the benefits of the intervention outweigh the burdens?’, ‘to what degree does the advance directive fit the situation at hand?’, ‘how much leeway did the patient allow the surrogate in overriding the advance directive?’ or ‘how well does the surrogate represent the patient’s best interests?’ [87].

The optimal implementation of ACP requires improved public understanding of end-of-life care issues [92] and patients who are more informed or educated about ACP [92]. Additionally, the provision of sufficient training opportunities for healthcare professionals to learn how to conduct ACP conversations is important. Adequate support in practice is essential in making healthcare professionals confident about engaging in ACP [9, 20, 25, 93, 94]. Training should at least entail the basic principles of ACP, the legal, deontological and ethical framework, the importance and effectiveness of ACP, a discussion of the professionals’ own barriers to ACP, general communication techniques and active listening skills, documentation of advance directives, communication with other professionals and how to make decisions at certain times [9, 20, 25, 93, 94]. Interactive sessions with role-plays, regular come-back sessions and a specific focus on attitudes towards talking about death and dying are also important [5, 25, 62, 95, 96]. These training programmes should be organised for GPs, nurses and social care workers, as the skills they provide often function as an important facilitator between physician and patient [92, 97].

Integrate ACP into the mission and policy of the organization and embed ACP in the organizational culture [62, 97‐99]. ACP should be part of daily practice and this requires a supportive culture within the community or facility and an open attitude to conversations about end-of-life care and dementia among healthcare professionals. Within the facility there should be a clear statement of intent and a formal policy concerning ACP and how to embed it in routine care [1, 62, 92, 97‐99].