iGAP- Improving General Practice Advance Care Planning

The purpose of this project was to increase advance care planning (ACP) in primary care.

About the Project

ACP is a process where people consider the various options related to future health care decisions and come up with a verbal or written plan of what care they would want (or not want) at the EOL. ACP has been shown to increase the quality of life of dying patients, improve the experience of family and health care professionals and decrease health care costs. Yet a national poll demonstrated that few Canadians have thought about, or made, an advance care plan. ACP should ideally be done in primary care where patients are not acutely ill, and can talk with their doctors with whom they have ongoing relationships.

To increase ACP in primary care, we collaborated with 20 primary care settings in Ontario, British Columbia and Alberta that helped us develop, evaluate and implement ACP tools and strategies. In addition, we built a network of stakeholders interested in ACP in primary care and partnered with provincial and national organizations to share our findings.

Project Team

Principal Investigators:

Michelle Howard, PhD, MSc — McMaster University

Doris Barwich, MD — University of British Columbia

Daren Heyland, MD, MSc, BSc — Queen’s University/Kingston General Hospital

Doug Klein, MD, MSc, BSc, CCFP(PC) — University of Alberta


Carrie Bernard, MD, CCFP, FCFP — McMaster University

Konrad Fassbender, PhD — Covenant Health

Amy Tan, MD — University of Alberta

Knowledge Users and Partners:

Louise Hanvey, RN — Canadian Hospice Palliative Care Association (CHPCA)

Jessica Simon, BSc, MBChB, MRCP(UK), FRCPC — University of Calgary

Marissa Slaven, MD — McMaster University

Project Contact: Dr. Michelle Howard — mhoward@mcmaster.ca

Key words: advance care planning; primary care; palliative care; quality improvement

Rationale, Objectives & Research Plan

Rationale: To improve end-of-life (EOL) communication and decision-making and thus, improve overall quality and patient-centred care, we need to increase ACP engagement by the average Canadian.

Objectives: The purpose of this knowledge translation proposal is to increase ACP completion rates by patients and families and stimulate greater interaction between these patients and their families and their health care providers in primary care settings in Canada.

Research plan: Our project consists of three phases. We will employ a variety of quantitative (e.g., surveys of clinician’s attitudes towards ACP and patient engagement in ACP) and qualitative techniques (e.g., focus groups and individual stakeholder interviews) to answer our research questions.

Communication to Patients & Family

Lay Title: Primary Care: Is this the right place to start talking to older adults about Advance Care Planning?

Key Findings:

  • When asked about Advance Care Planning activities: 68.5% of patients thought about wishes for future medical care if they could not speak for themselves; 52.8% talked with someone about their wishes; 32.0% had written down their wishes; and 50.4% named someone to be their substitute decision-maker. Only 23.0% engaged in all 4 key ACP activities.
  • Of those patients who had talked to someone about wishes for future medical care only 18% had talked with their family doctor.
  • Only 5% of patient charts referred to ACP or other medical treatment preferences. Yet, 92.6% of patients who completed the survey indicated that they would not want CPR and 30% of patients chose comfort care only. This highlights the need for better quality ACP in order to provide end of life care that is consistent with patient’s wishes.

Why was this study was needed?

There is little information on the extent of ACP in primary care. Prior research focused on completion of advance directives or do not resuscitate preferences. During the last year of life older adults living with frailty often use more health care and must make many “in-the-moment” care decisions. Since many older adults living with frailty depend on others for support, there is an increased chance that caregivers will have to make decisions for them without having ever discussed what’s important to them. Our study assessed primary care patients’ engagement in ACP and identified an opportunity for family physicians to take a more active role in communication about values and preferences, as well as the preparation of substitute decision makers.

Suggestions on how these findings could impact frail older adults and/or their family caregivers and how this might be measured:

  • Making decisions is challenging for older adults living with frailty because there is a lot of uncertainty about the pros and cons of medical treatments. Much of this uncertainty is because the trade-offs between the benefits and harm are very sensitive to people’s values: what is “right” for one, may be “wrong” for another.
  • 70% of patients living with frailty will lose decision-making ability at the end-of-life, making it vital that they share their values and preferences for EOL care with substitute decision-makers and their clinicians. ACP prepares people, and their substitute decision-maker(s), for these “in-the-moment” treatment decisions by aligning their medical care with their unique values, goals and preferences.
  • Primary care is ideally suited to facilitate ACP in part because of the longstanding relationship between patients, families and their family physician, but also because of the patient-/family-centered approach inherent to family medicine.

Brief comment on type of study in lay terms:

  • We studied ACP engagement among older adults in Canadian primary care.
  • A survey was completed by 810 patients 50 years of age and older in 20 family practices in British Columbia, Alberta and Ontario.
  • Patients who completed the survey were asked whether they had heard about ACP and whether they had engaged in the four key elements of ACP (thought about, talked about, and written down their wishes, and chosen an SDM).
Communication to Policy

Title: Engaging patients and their health care providers in Advance Care Planning in Primary Care

Key Findings:

  • Of the 53% of primary care patients who had talked to someone about Advance Care Planning (ACP), it was nearly always to family members, and infrequently to their family doctor
  • When asked “What is the one thing that makes it very hard for you to talk to your family doctor about medical treatments at the end of life?”, two themes emerged:
    • Fear of a potential negative impact on the relationship with the physician
    • Not enough time in the appointments
  • Health care providers’ also regard insufficient time during patient appointments as the main barrier to ACP.

Why was this study needed?

There is little information on the extent of ACP in primary care. Our studies have identified critical barriers to ACP among patients and clinicians in primary care. ACP tools such as Speak Up are effective tools to prepare patients to discuss ACP with physicians. We hope that these findings will help move the needle towards better quality and quantity of ACP in primary care in Canada.

Suggestions on how administrators or policy maker could use the findings:

  • Support initiatives aimed at raising awareness of ACP among patients and their SDM
  • Support initiatives to normalize ACP conversations between patients and their family doctor
  • Support training programs for health care providers to enhance their skill and confidence to discuss ACP with patients and SDMs

Brief comment on type of study in lay terms:

  • ACP surveys were administered to patients and their health care providers in 20 Canadian family practices to identify perceived barriers to ACP.
  • ACCEPT study: Participants (N=760) were patients aged 66 on average (50 – 95)
  • DECIDE study: Participants were physicians (60%) and the remainder were allied health professionals (RN, RPN, Nurse practitioners, Social workers)
  • ACP Tool Testing: Participants from the 20 family practices across Canada were 50 and older, English-speaking and cognitively able.  Participants completed a survey before and after completing an ACP tool (website or workbook) to evaluate changes in ACP engagement.
Communication to Researchers

Lay Title: Barriers to and enablers of advance care planning with patients in primary care:  a survey of healthcare providers

Key Findings:

  • Physicians rated insufficient time, inability to electronically transfer the ACP across care settings, decreased interaction with patients near end of life due to transfer of care, and patients’ difficulty understanding limitations and complications of treatment options as the highest barriers.
  • Other health professionals additionally identified their own lack of knowledge and difficulty accessing the physician as barriers.

Why was this study needed?

In primary care, there are barriers to engaging patients in ACP at the patient, provider and system levels that could potentially be addressed through the informed development of multi-faceted interventions.

Brief overview of the methodology:

  • We aimed to identify perceived barriers to, and enablers of, ACP with patients among physicians and allied health professionals in primary care.
  • We administered a cross-sectional survey (DECIDE) to family physicians and other health professionals (n=162) in British Columbia, Alberta and Ontario. Clinicians were asked to rate the magnitude of each barrier using a 7-point scale: 0=not at all; 1=very little; 2=little; 3=a moderate amount; 4=a lot; 5=a great deal; 6=an extreme amount.
  • Four barriers had a mean score of 3 or higher: insufficient time, inability to electronically transfer the patient’s advance care plan, decreased interaction with patients due to transfer of care and patients’ difficulty understanding treatment options near end of life.

Potential impact of findings on clinical practice/patient care and how this impact might be measured:

Older adults living with frailty and their families identified issues in late life care that were most important to them but with which they were least satisfied: that clinicians took a personal interest in them, communicated clearly and consistently, and listened; receiving timely information about their/their loved one’s condition; and having discussions with clinicians about final location of care and use of technology at EOL.

Remaining knowledge/research gaps:

It is unclear whether implementation of advance care planning conversations is feasible in the family practice setting.