1. Don't wait for your patient to bring up ACP, initiate the conversation

Many patients expect their physicians to start the conversation about ACP. ^{Reference Bernacki and Block6,Reference Bernard, Tan, Slaven, Elston, Heyland and Howard7} In a study of patients with multiple sclerosis, 64% wanted their physicians to address disease progression and dying. ^{Reference Buecken, Galushko and Golla8} Additionally, physicians who seemed to avoid raising these issues were rated as less empathetic. In a study of stroke prevention clinic patients, 58% of stroke survivors were interested in having further ACP discussions with their stroke neurologist. ^{Reference Johnson, Ulrich, Siv, Taylor, Tirschwell and Creutzfeldt9}

A number of perceived barriers may prevent neurologists from bringing up ACP with their patients. A study of cardiologists and internists caring for patients with heart failure found common barriers included a lack of time to conduct ACP discussions, fear that bringing up ACP will be perceived negatively or cause patient distress, uncertainty about the role a specialist ought to play in ACP, and personal discomfort with the subject. ^{Reference Ahluwalia, Levin, Lorenz and Gordon10} Evidence demonstrates that ACP conversations are desired and viewed positively by the majority of patients and, indeed, many patients may be waiting for their physicians to start the conversation. ^{Reference Bernacki and Block6–Reference Johnson, Ulrich, Siv, Taylor, Tirschwell and Creutzfeldt9}

2. For patients with progressive illness that could impact cognition, initiate ACP conversations as early in the disease course as possible

ACP conversations should begin as early as possible in a patient’s disease course, particularly for those with illnesses that may impact cognition. ^{Reference Oliver, Borasio and Caraceni11,Reference Harrison Dening, Sampson and De Vries12} A 2014 retrospective nationwide study conducted in Belgium found that only about one in 10 patients with dementia residing in nursing homes had the opportunity to participate in ACP prior to death. ^{Reference Vandervoort, Houttekier, Van Den Block, Van Der Steen, Vander and Deliens13} Key clinical events can be used to trigger ACP conversations, including the time of diagnosis, transitions in place of residence (e.g. to assisted living or a nursing home facility), clinical deterioration, or upon patient and family request. Uncertainly about the decision-making capacity of patients with potential cognitive impairment may arise during ACP. Dementia-specific guidelines emphasize that full mental capacity should be assumed and that capacity should be assessed in the moment with respect to particular decisions, given the non-static nature of capacity in the context of cognitive impairment. ^{Reference Harrison Dening, Sampson and De Vries12}

3. Encourage family and care partner involvement in ACP

The process of ACP often involves the identification of one or more substitute decision-makers (SDMs) to help guide care in the event a patient is unable to speak for themselves. Involving a patient’s family members and loved ones in ACP discussions whenever possible helps ensure SDMs understand the patient’s wishes and priorities and what the SDM role entails. Additionally, patient families and care partners may have unique fears and concerns related to their loved one’s future care that can be addressed in the ACP process. Involvement in the ACP process may also reduce the stress and uncertainty SDMs feel in the event they have to assume decision-making responsibility. ^{Reference Cresp, Lee and Moss14}

4. Use clear, direct language when discussing prognosis

Straightforward language is best when discussing prognosis with patients and families. Physicians may avoid frank discussion of prognosis due to the uncertainty inherent in prognostication as well as fear of diminishing a patient’s hope for a favorable outcome. A shared understanding of prognosis is essential for meaningful ACP discussions, and most patients and families prefer explicit disclosure of prognosis. ^{Reference Ahalt, Walter, Yourman, Eng, Pérez-Stable and Smith15} Further, patients may equate lack of discussion of prognosis as indicating a favorable outlook (i.e. “no news is good news”). In a small study of patients on acute stroke and stroke rehabilitation wards, many patients were unaware of their risk of recurrent stroke and future deterioration, which may contribute to reluctance to engage in ACP. ^{Reference Green, Gandhi, Kleissen, Simon, Raffin-Bouchal and Ryckborst16} Even when prognosis is explicitly discussed, patients and families may interpret prognostic statements with an optimistic bias. ^{Reference Zier, Sottile, Hong, Weissfield and White17} In a survey of patients with newly diagnosed malignant gliomas, the majority reported believing their cancer was curable, and over 40% reported understanding the primary goal of their treatment was cure. ^{Reference Forst, Quain and Landay18} Discordance between clinician, patient, and caregiver understanding of prognosis in malignant glioma is high, ^{Reference Sharma, Fruth and Barrera19} which may confound ACP discussions. Helpful guidance on estimating and communicating prognosis in neurologic illness is discussed by Holloway et al. ^{Reference Holloway, Gramling and Kelly20}

5. Use standardized, specific language to document ACP conversations

The value of an advance care plan is contingent on its availability and clarity when and where care decisions are being made. Documentation of ACP is frequently unavailable at the point-of-care. ^{Reference Platts-Mills, Richmond and Lefebvre21,Reference Robinson, Vickrey and Holloway22} Ambiguous or unavailable documentation decreases the likelihood a patients’ wishes can be honored. In Alberta, the “Goals of Care Designation” is a standardized format to describe and communicate the general focus of a patient’s care, divided into “resuscitation”, “medical”, and “comfort” goals. ²³ Similar tools are used in Québec (i.e. “Levels of Care and Cardiopulmonary Resuscitation”) ²⁴ and by regional health authorities in British Columbia (i.e. “Medical Order for Scope of Treatment”). A study across three Québec hospitals found a high rate of patient and family engagement in establishing Level of Care designations. ^{Reference Frenette, Saint-Arnaud and Serri25} In 98.7% of cases, care was consistent with the patient’s Level designation at the time of death. ^{Reference Frenette, Saint-Arnaud and Serri25} The shared language provided by such standardized designations may allow for clear communication between healthcare providers; however, designations should be accompanied by a description of the specific goals and values that inform the patient’s advance care wishes. Further efforts to improve the accessibility of ACP documentation are required: not all Canadian provinces and territories have standardized tools for documenting ACP, and even in a jurisdiction with a shared vocabulary and a shared electronic medical record, goals of care designations may be unavailable at the point-of-care.

6. Don't recommend or initiate aggressive care without establishing prognosis, preferences, and goals of care

Choosing Wisely recommendations put forth by the Canadian Society of Internal Medicine and the Canadian Critical Care Society highlight the importance of establishing a patient’s prognosis, preferences, and goals prior to escalating care. ^26,27 As many as one in three patients receive non-beneficial treatments in the last six months of life, including resuscitation and intensive care for patients with advanced, incurable illnesses. ^{Reference Cardona-Morrell, Kim, Turner, Anstey, Mitchell and Hillman28} Aggressive care for those with advanced disease is associated with decreased quality of life and care satisfaction, in addition to increased healthcare costs. We recommend avoiding the presentation of aggressive care as the default pathway without discussing alternatives, including comfort-focused care, and exploring the patient’s wishes and priorities.

7. Revisit advance care plans regularly and whenever there is significant change in a patient’s status

ACP is a dynamic, ongoing conversation between patients, their loved ones, and their healthcare providers. Conversations should be revisited as the patient’s priorities, goals, and health evolve. Patient awareness that ACP conversations can be revisited may also reduce anxiety related to advance decision-making. As discussed in (2), a variety of clinical events and transitions, such as transitions in care location, can serve as triggers for initiating and revisiting ACP discussions.

8. Patients who enquire about Medical Assistance in Dying should receive comprehensive information about care options

Since 2016, federal legislation has allowed eligible Canadian adults to request Medical Assistance in Dying (MAiD). ²⁹ We recommend that patients who enquire about MAiD be provided with comprehensive information about MAiD eligibility, the MAiD process, and relevant alternatives. Provincial and territorial regulatory bodies outline the precise requirements for addressing an enquiry about MAiD, and we recommend neurologists familiarize themselves with their licensing body’s guidance.