How should I approach advance care planning (ACP) and goals of care (GOC) discussions with patients living with dementia?

Most ACP takes place in the community, with family physicians often involved in these discussions. Many family physicians also provide hospital care and work in long-term care where GOC discussions are required. The distinction between ACP and GOC discussions is not interpreted the same by all clinicians (Figure 1).1Dementia is a progressive and fatal disease requiring end-of-life planning and decisions unique to the diagnosis. Knowledge of legislation about decision making and consent is crucial, as legal and ethical practicalities differ considerably among provinces and territories.

Flow chart indicating difference between ACP and GOC discussions

Resources about ACP are more widespread in Canada and include Hospice Palliative Care Ontario,1 Advance Care Planning Canada,2 The Conversation Project,3 and the Plan Well Guide.4 There have also been publications about planning for a “good death” in people with dementia.5-7 Research has shown ACP may be associated with decreased hospitalizations and increased concordance between care received and prior wishes.8

Unfortunately, few caregivers and those with dementia are aware of the available resources. Those who are aware report that resources are generic and do not prepare them for the specific issues commonly encountered by those living with dementia at end of life.

Clinicians are often reluctant to engage in ACP and GOC discussions, in part due to lack of training and knowledge. Resources specific to dementia and training on how to discuss these topics with patients are needed. Language and narratives tested with patients can help clinicians gain confidence and competence when having these discussions with patients and caregivers.

ACP and GOC discussions for persons living with dementia include 2 general objectives:

Identifying a decision maker. People living with dementia need a decision maker (eg, substitute decision maker, power of attorney [terminology and legislation varies with jurisdiction]) and this should be clarified when the person is early in their illness and capable of assigning that role. Patients with dementia who have decisional capacity should be prompted to share their values and preferences early with their substitute decision maker(s) or power of attorney to provide guidance for when they lose capacity to speak for themselves.

Identifying types of decisions. It is helpful for a decision maker to be aware of the types of decisions in which they may be asked to participate, especially those related to life-sustaining treatments (eg, feeding support) and common decisions such as the treatment of behavioural and psychological symptoms of dementia (BPSD). Shared decision making is when physicians and other clinicians listen to a patient’s values and provide recommendations concordant with the patient’s values when decisions need to be made.

At end of life, those living with dementia often die of 3 issues specific to the diagnosis:

Loss of desire for food (not eating enough to sustain life). Before assuming this is an end-of-life stage in dementia, consider remediable factors such as depression with or without delirium (eg, where patient is too confused or too drowsy to eat and drink), pill burden (which can create a sense of full stomach), and limited efforts to feed the patient (eg, lack of assistance with meal or hand feeding). Additionally, cholinesterase inhibitors can suppress appetite (specific to dementia). Other medications that can suppress appetite are listed in an article in the Canadian Geriatrics Society Journal of CME.9

Recurrent aspiration. Aspiration in a patient with severe dementia is a sentinel event, as there is an association between development of aspiration and future mortality.10 As per Choosing Wisely Canada, it is recommended to avoid feeding tubes in those with advanced dementia.11

Behaviour preventing investigation and treatment. Close to end of life, BPSD may be serious enough that investigations or treatments are not possible or more likely to cause harm than provide benefit. In addition, the focus of care may change—for example, choosing medications that emphasize or accentuate sedation, which is not usually a treatment goal earlier in dementia care.

Medications used to manage behaviour may lead to morbidity or mortality. These medications should be used judiciously and when nonpharmacologic approaches are inadequate. As end of life approaches, collaborative decision making should be guided by the nature of the person’s suffering and GOC. More information can be found in the Canadian Geriatrics Society Journal of CME.12

Clinicians should discuss management goals (including harm-benefit considerations) for responsive behaviours and agitation with caregivers and decision makers based on overall GOC. Clear documentation of these discussions is important.

It may be helpful to discuss end-of-life issues via structured frameworks for difficult conversations. The Serious Illness Conversation Guide is a framework that can be used when discussing end-of-life care.13 Discussions on how to apply the framework for people living with dementia is beyond the scope of this article; however, a detailed review was published in 2024 in the Canadian Geriatrics Society Journal of CME.14 That article provides examples of narratives that can be used when discussing end-of-life issues, including loss of desire for food (not eating enough to sustain life), recurrent aspiration, and unresolving behaviour or delirium preventing investigation and treatment. As clinicians gain experience and confidence, they will find their own best narratives for discussing end-of-life issues for people with dementia.

Geriatric Gems is produced in association with the Canadian Geriatrics Society Journal of CME, a free, peer-reviewed journal published by the Canadian Geriatrics Society (http://www.geriatricsjournal.ca). The articles summarize evidence from review articles published in the Canadian Geriatrics Society Journal of CME and offer practical approaches for family physicians caring for elderly patients.

Competing interests

None declared