8. Advance Care Planning

Advance care planning (ACP) is a process through which a patient, in consultation with healthcare providers and family members, states their preferences about future healthcare decisions if the patient become incapable of participating in decision-making regarding their healthcare needs. It promotes patient autonomy, facilitates informed decision-making, and fosters communication among individual with stroke, families, and healthcare providers. ACP also improves alignment between patient wishes and the care received, reduces decisional conflict, and can lessen emotional burden on surrogate decision-makers. By clarifying treatment preferences in advance, ACP also contributes to more appropriate resource use and enhances the overall quality of end-of-life care.

Individuals with lived experience of stroke stress the importance of advance care planning with family members and loved ones and discuss how the concept may not be well-known. They explain that although these types of conversations may be new or challenging, they ultimately allow the individual to have some control and allow their voice to be heard during difficult medical times. These conversations can also support family members when they are faced with stressful decisions about the individual’s health. Individuals with lived experience also emphasize the importance of having advance care planning conversations throughout the course of one’s life, and to be aware that one conversation may not be enough as wants and wishes can change over time.  They emphasize the importance of timely and comprehensive discussions about ACP, including legal considerations and the role of substitute decision makers. They value the supportive environment of peer support groups for facilitating non-judgmental discussions about ACP. 

Individuals with lived experience express that normalizing the process of developing an advance care plan is helpful. They also state the value of having a resource to guide these discussions, especially for those who haven’t considered advance care planning previously.

Following stroke, systems should be in place to optimize successful transitions and return to life roles, health management, activities and social participation.  These may include:

1. Education and training in person-centred care and shared decision-making skills and strategies for all healthcare professionals, individuals with stroke, families, and caregivers.
2. Process in place to ensure Advance Care Plans are reviewed and updated if needed, periodically with the individual with stroke. Family and caregivers as appropriate.
3. Protocols for advance care planning to elicit patient and family goals for care preferences and ensuring these are documented and communicated to decision-makers and healthcare team members.
4. Information on advance care planning and links to local stroke support organizations and their services for staff to share with individual with stroke and families.
5. Communication and skills training for physicians, nurses, and allied health professionals that addresses supporting individual with stroke and their families through advance care planning and dealing with potential conflicts over a patient’s wishes and decisions.

System Indicators

1. Proportion of healthcare organizations with formal policies or protocols in place to guide ACP discussions.
2. Proportion of healthcare staff who have completed training in culturally sensitive, values-based advance care planning discussions.
3. Proportion of organizations with standardized fields in the electronic medical record (EMR) for documenting ACP discussions and advance directives.

Process indicators

1. Proportion of individuals with stroke who have been approached to participate in advance care planning and/or who have a documented conversation with a healthcare provider.
2. Proportion of individuals with stroke who identify and have documented a substitute decision-maker. 
3. Proportion of individuals with stroke who complete a personal or advance care plan and have it documented on their chart.

Person-oriented outcome and experience indicators

1. Percentage of individuals who, through surveys, report understanding their options for future care and feel their values are respected. 
2. Proportion of individuals with stroke with advance care plans whose actual care was consistent with the care defined in their plan.
3. Family-reported experience (via post-death or discharge surveys) with communication about care goals and advance planning.

Resources and tools listed below that are external to Heart & Stroke and the Canadian Stroke Best Practice Recommendations may be useful resources for stroke care. However, their inclusion is not an actual or implied endorsement by the Canadian Stroke Best Practices or Heart & Stroke. The reader is encouraged to review these resources and tools critically and implement them into practice at their discretion.

Healthcare Provider Information

• Canadian Stroke Best Practice Recommendations: Acute Stroke Management Module
• Canadian Stroke Best Practice Recommendations: Vascular Cognitive Impairment Module
• Canadian Stroke Best Practice Recommendations: Rehabilitation, Recovery and Community Participation following Stroke, Part One: Rehabilitation Planning for Optimal Care Delivery
• Palliative Care Education for All Care Providers
• Burton and Payne Palliative Care Pathway
• Bernacki RE, Block SD. Serious Illness Communications Checklist. Virtual Mentor
• Registered Nurses Association of Ontario Guidelines for End-of-Life Care
• Canadian Virtual Hospice: Decisions
• Canadian Virtual Hospice: My Grief Learning Modules
• Canadian Virtual Hospice: The Learning Hub
• Canadian Hospice Palliative Care Association. Resources

Resources for Individuals with Stroke, Families and Caregivers

• Heart & Stroke: Your Stroke Journey
• Heart & Stroke: Acute Stroke Management Infographic
• Heart & Stroke: End of Life Care and Palliative Care
• Canadian Hospice Palliative Care Association. Resources
• Canadian Virtual Hospice: Decisions

Evidence Table and Reference List 8

Advance care planning (ACP) is a vital process that enables individuals to articulate their values, goals, and preferences for future medical care, particularly if they are no longer able to communicate or make decisions following a medical emergency, such as stroke. Elements to consider in ACP include prognosis of the individual with stroke, treatment options, goals of care, and the identification and documentation of end-of-life wishes. In a recent survey, Johnson et al. ¹⁵⁹ surveyed 219 individuals with stroke attending an outpatient stroke clinic, a median of 5 months following a stroke. Patients completed the Planning After Stroke Survival survey, designed to explore the prevalence, experiences, and influencing factors around goals-of-care and ACP conversations. Seventy-three percent of individuals with stroke reported having previously discussed ACP with a physician, while 58% were interested in having additional ACP conversations with their stroke doctor. In a nationally representative study of almost 5,000 community-dwelling older adults, living in the United States, approximately 75% of individuals were reported to have been involved in some form of ACP engagement, defined as having (1) living will or advance directive; (2) durable power of attorney (DPOA); or 3) discussion of preferred medical treatment in the event of serious illness. ¹⁶⁰ Green et al. ¹⁶¹ used participant observation and semi-structured interviews to gather information from 14 individuals with stroke, recruited from an acute stroke unit and 2 rehabilitation units and 4 healthcare professionals (HCP), that was related to the communication processes regrading ACP. Four key themes emerged related to why/why not participants engaged in the ACP process: i) lack of perceived urgency by participants, many of whom felt the physician and/or family members would make decisions in accordance with their wishes; ii) a lack of initiation by HCPs to discuss issues around ACP; ii) HCPs expressed hesitation about initiating discussions related to ACP, and uncertainty as the best timing for such discussions. There was also a lack of awareness as to what ACP is, and thought it was outside their scope of practice and iv) confusing ACP with advance directives, designation of care and living wills.

In the PREPARE For Your Care trial, ¹⁶² 986 adults aged ≥ 55 years with ≥2 chronic or serious illnesses, were randomized to an online program called PREPARE For Your Care or to read an advance directive (AD) only. The PREPARE intervention included an interactive online values questionnaire that generated a unique action plan and “Summary of My Wishes” document, when all the questions were answered. This summary was printed and given to participants. PREPARE participants were also asked to review the AD, in either English of Spanish for 5 to 15 minutes. Compared with the AD only group, individuals in the PREPARE arm were more likely to engage in ACP documentation (43.0% vs 32.0%, p<0.001) and self-reported engagement was higher at 15 months (98.1% vs. 89.5%). These improvements were observed consistently across both English- and Spanish-speaking participants. In a subgroup analysis of the PREPARE trial, ⁴⁰ that included 91 participants who had sustained a stroke, those in the PREPARE group had a significantly greater increase in the mean number of completed ACP elements than the AD-only group at 12 months.  

Results from a small number of other studies including participants with a mixed medical diagnosis also suggest that interventions aimed at increasing ACP have been successful in significantly increasing the likelihood that end-of-life wishes are known and respected. In a study of 309 individuals with stroke admitted to internal medicine, cardiology, or respiratory medicine, Detering et al. ¹⁶³ randomized individual with stroke to receive formal advance care planning from a trained facilitator or usual care. The intervention was based on the Respecting Patient Choices model, which involves reflection on goals, values, and beliefs, documentation of future health care wishes, and appointment of a surrogate decision maker. Of those who died, end-of life wishes were significantly more likely to be known and respected for participants in the intervention group compared with those in the control group (86% vs. 30%, p<0.01). Following the death of a loved one, family members of those in the intervention group reported significantly less anxiety and depression and more satisfaction with the quality of their relative’s death, compared to control group family members. Kirchhoff et al. ¹⁶⁴ randomized 313 individual with stroke (and their surrogate decision makers) with congestive heart failure or end-stage renal disease who were expected to experience serious complication or death within 2 years, to receive a patient-centered ACP intervention or usual care. The intervention was composed of a 60 to 90-minute interview with a trained facilitator to discuss disease-specific end-of-life care issues and options and documentation of treatment preferences. 110 patients died within the study period, of which 26% required a surrogate decision maker at the end-of-life. Only a single patient in the intervention group and 3 in the control group received end-of-life care that was contrary to their wishes for reasons other than medical futility. With respect to resuscitation preferences, non-significantly fewer patients in the intervention group received care that was contrary to their wishes (1/62 vs. 6/48). Malhotra et al. ¹⁶⁵ included the results of 132 RCTs examining the efficacy of ACP and advanced directive interventions, in both healthy adults and those with chronic diseases. Most interventions focused on communication, with approximately one-third incorporating a decisions aid. There was equivocal evidence that ACP interventions improved patient outcomes such as end-of-life care consistent with preferences (25% of trials [3/12] reported improvement), quality of life (0/14 studies reported improvement), mental health (21% of trials [4/19] reported improvement) and home deaths (25% of trials [1/4] reported improvement), or that it reduced healthcare use/costs (18% of trials [4/22 studies). However, ACP interventions improved other outcomes including quality of patient–physician communication (68% of trials [13/19] reported a benefit), and patient/caregiver congruence in preference (82% of trials; 18/22 reported a benefit).

Sex & Gender Considerations

An online opinion survey of 1,523 randomly selected Canadians in the general population, sponsored by Canadian Researchers at the End-of-Life Network (CARENET), examined knowledge and attitudes towards ACP. ¹⁶⁶ Six sociodemographic and economic variables examined, of which sex was one. Models were developed to explore independent predictors of several outcomes including: 1) has heard of ACP, 2) discussed ACP with family/friends, 3) discussed ACP with healthcare provider, 4) has a written ACP plan, 5) has a designated decision maker and 6) an aggregate ACP outcome. While recognition of the term ACP was generally low, there were some significant sex differences in responses. Women were 58% more likely to discuss ACP with their friends. In the aggregate model of ACP knowledge, female sex was also a significant predictor. Other independent predictors were older age and higher income.