Setting the Context

Advances in medical treatments and care practices have allowed more Canadians reach advanced ages with complex health conditions. As a result, patients, families, and health care providers will be called upon to make increasingly difficult ethical and medical decisions about treatment and intervention options.

The scope of these decisions can vary widely, including:

• Whether to take a proposed medication that may not cure but prolongs life
• Whether and when to move into a long-term care home
• Whether and when to use and/or withdraw a feeding tube
• Whether and when to consider Medical Assistance in Dying (MAID) as a care option

Often, these questions don’t have simple medical answers. Rather, they involve things at the heart of health care: an individual’s values and preferences. These are weighty matters. Yet, families and the individuals requiring care and support often need to make choices and decisions in uncomfortable circumstances, nudged by busy health and social care professionals who are focussed on providing medically appropriate care, but who may not otherwise know the wishes of patients and their families.    This experience can be stressful for all involved, especially when patients and their loved ones may not have the luxury of long, open discussions with medical professionals.

Informed consent is a basic ethical principle of health care. Individuals are entitled to know the risks and benefits of a given treatment or care option being offered to them, and to decide whether they want to pursue it, free of coercion. Sometimes, due to illness, an individual may be incapable of deciding, and their loved ones may have to decide for them as their legally designated substitute decision maker. That person’s role is to carry out wishes expressed in advance, or, if these are absent, make judgments about what the individual requiring care would have wanted.

Occasionally, despite everyone’s best efforts, these choices don’t reflect what the individual, with the benefit of full information and sufficient time, would have chosen. In these cases, it may be difficult to tell whether the principle of informed consent has been fully satisfied. For this reason, it’s important for all Canadians, and especially older Canadians, to inform themselves about relevant health and care issues and to think about treatment and care options, values and preferences well in advance. This includes management of chronic conditions, what kind of supportive or life-saving care is acceptable in the event of a terminal illness or condition, and where a patient will live and who will look after them if they are no longer able to live independently.

Advance Care Planning (ACP) is the process by which a person expresses what they wish to take place should they become incapable of consenting to or refusing treatment or personal care, including deciding who will make decisions their behalf if this happens.[1] The process should include discussions with family members, friends, and other trusted sources, and should cover a wide range of scenarios and treatments, including end-of-life care, chronic conditions, and long-term care needs. Other people who may be involved include health care providers and lawyers who can help to facilitate and document the person’s decisions in the form of an advance directive.[2]

The evidence is clear that ACP makes a big difference. Studies show that ACP – especially formal programs involving trained facilitators – improves the quality of end-of-life care.[3] A review of studies found that patients who had an advance care plan in place were less likely to be admitted to an intensive care unit, and those who were admitted stayed there for less time.[4] Some studies even suggest that just having an advance directive in place reduces the risk of hospitalization and one’s chances of dying in the hospital.[5]

ACP also helps to support loved ones in a difficult time. Formal ACP counselling has been shown to significantly reduce stress, anxiety, and depression in family members, and patients and family members who received the counselling were more satisfied in general.[6] Finally research also suggests that ACP may reduce health care costs by avoiding unwanted treatment.[7]

Following Carter V Canada in 2015, the federal government passed legislation to allow eligible Canadians request medical assistance in dying (MAID).[8] MAID is available to older Canadians with a grievous and irremediable medical condition and who are able to provide informed consent with two important exceptions: advance requests (i.e. not near death) are not permitted, and mental health cannot be the primary issue, although both exceptions are being challenged.[9]

With increasing options at end-of-life, every effort must be made to ensure that as many Canadians as possible, particularly older Canadians, engage in timely and comprehensive ACP, and are supported in doing so. While many provinces and territories have also begun encouraging ACP, the “2019 Pan-Canadian Framework for ACP in Canada” noted that infrastructure supports required to facilitate widespread ACP implementation have yet to be developed. These include training for health care providers, effective ways to document and transfer people’s wishes, and a system of accountability for ACP.[10]

The COVID-19 pandemic has heightened the importance of participating in ACP prior to experiencing a potentially serious illness. Individuals who developed a more acute and severe illness due to COVID-19 requiring interventions were more likely to be older and have greater comorbidities, similar to those who may wish to forgo certain treatments and would desire a ‘goal of care’ discussion, especially if the outcome was survival but with severe functional impairment or cognitive impairment.[11] As a result, ACP is particularly important to support our collective pandemic preparedness and to avoid intensive life-sustaining treatments that patients may not wish to experience, especially in a time of low health care capacity. Furthermore, although unwanted or non-beneficial CPR under any circumstance may risk increasing psychological distress for a patient’s family members, inappropriate CPR during a pandemic is especially stressful and potentially dangerous for health care workers.[12]

As a result of the pandemic, the provision of palliative care services at the community level has been strengthened out of necessity, albeit unevenly, leading to an increased number of evidence-based guidelines for managing patients at end-of-life.[13],[14] The pandemic has highlighted a greater need for improved policies to support the greater provision of ACP and end-of-life care.

What Are the Issues?

1. Canadians Aren’t Sufficiently Informed, Encouraged, and Empowered to Initiate and Participate in ACP Discussions
   

   Recent surveys show that many Canadians are either not aware of the need for ACP or find it difficult to start and sustain the often-challenging conversations involved. A 2019 Speak Up Canada survey found that 8 in 10 Canadians have thought about end-of-life care, but only less than 2 in 10 have an ACP.[15] Some reasons include being afraid of death and not wanting to upset family members.[16] This problem is not unique to Canada. A survey of experts in Australia concluded that similarly low uptake of ACP was due in large part to “inadequate awareness, societal reluctance to discuss end-of-life issues, and lack of health professionals’ involvement in ACP.”[17] The Canadian Bar Association similarly observed that “a reluctance to contemplate and speak about illness and death often stands in the way of effective ACP.”[18]
   

2. Health and Social Care Providers Lack the Education and Training to Effectively Facilitate Advance Care Planning
   

   Health and social care professionals play a critical role in initiating and facilitating ACP in a range of settings. As such, engaging in sensitive conversations with care recipients and their family members needs to be part of the core skill set of all clinicians. No one profession can be solely responsible for ACP, and all health and social care team disciplines need to be educated and supported to play their role. In addition to formal instruction, health and social care providers require continuing education and practical training.

   ACP requires ongoing and evolving conversations,  not just documenting an individual’s choices at a given point in time. It’s an ongoing process that threads through the continuum of care from primary to acute to long-term care settings.  It’s the responsibility of every health and social care provider to continually discuss care plans with patients, family members, and caregivers.  Individuals, including the severely ill and/or cognitively impaired, need to be as involved in decision-making as possible, and they should be provided the health literacy information required to make truly informed decisions and goals for their care. Providers must also recognize that these goals, along with a person’s values and preferences, may change over time.

   Given the importance and complexity of the ACP process, formal and experiential education is required, starting early in providers’ professional development and education. In many cases, however, professionals don’t have access to adequate training in ACP.[19] For instance, a 2014 survey found that only 25% of Canadian primary care providers felt they had the experience and comfort levels needed to confidently discuss ACP about illness and end-of-life care with patients. A further 52% felt somewhat uncomfortable, while 24% reported no experience or comfort. A 2009 national roundtable that convened a wide range of stakeholders revealed that many health care providers were reluctant to engage in ACP discussions, emphasizing a need for a “culture shift – that should be focused on re-educating the public and health care providers and providing them with the tools they need to do this.”[20]

   While core ACP competencies for health and social care providers have been identified,[21] there is currently no central resource that provides ACP education materials or standards to individual providers, health care organizations, or educational institutions.

3. Organizations Don’t Have Readily Accessible Guidelines, Standards, and Policies to Support Advance Care Planning
   

   ACP is most effective when the individual care recipient’s decisions are well documented and readily accessible in the full range of health care settings. An ideal health care system would include “a consistent, transferable and seamless mechanism for all care providers to share information about advance care planning and ensure conversations continue throughout an individual’s care journey across all care settings.”[22] For example, in 2015, Quebec created a provincial registry for documenting preferences about accepting or refusing specific medical interventions if patients ever become incapable of giving consent.[23] Although this is a great step towards implementing a centralized way to ensure wishes are reflected in end-of-life care, the questionnaire reduces advance medical care decisions to a limited set of choices and it does not adequately reflect the full range of values people may have about end-of-life preferences.[24] To facilitate ACP implementation, proper documentation protocol is needed to facilitate accessibility of ACPs in many care settings.
   At present, despite many recently developed ACP tools and strategies,[25],[26],[27],[28] there is no consensus on the best way to document ACPs, or on how to design medical information systems so that care providers have access to patient ACPs when its needed most. Nor are there best-in-class evidence-based frameworks that institutions can look to when designing and evaluating an ACP program. These are all significant system-level obstacles to a “consistent, transferable and seamless” ACP regime.

Evidence-Informed Policy Options 

1. Raise Awareness and Educate Canadians About ACP
   

   Existing, well-studied ACP initiatives have emphasized public outreach in order to “engage capable adults and their families, as is appropriate, in ACP through raising awareness, initiating dialogue about ACP and connecting people to the means of engaging in ACP.”[29] A number of groups have organized large-scale, nation-wide campaigns to raise awareness and educate the public about ACP. For example, Advance Care Planning Canada is a campaign organized by a diverse set of stakeholders.[30] One of its main goals is to increase the number of Canadians who engage in ACP with family and friends by 10%. It includes a well-designed, easily navigable website (https://www.advancecareplanning.ca/) and engages in outreach to community organizations, the general public, patients with acute and/or chronic illness, families/caregivers, health care professionals, and policymakers. Building on such initiatives, the federal government can be a highly effective partner in awareness-raising over the short, medium, and long term.

   In the short term, the federal government can encourage Canadians to access the many existing resources developed by provinces and territories, which range from “how to” guides to straightforward, standard ACP forms (see Table 8). For instance, the federal government’s services for seniors portal, www.seniors.gc.ca, could include materials promoting the advantages of ACP in simple, accessible terms, with links to key resources.

   In the medium term, the many federal organizations involved in the care for older adults could use their portals and communications channels to direct them and their caregivers to ACP resources, and make ACP awareness a clear goal at the service delivery level, supported by the necessary training for all client-facing staff.

   Over the longer term, ACP engagement could be emphasized as a clear priority in health care discussions between the federal and provincial/territorial governments, and resources dedicated to the development of a joint promotion strategy around an issue of collective importance.

2. Support Health and Social Care Professional Education in ACP

   The federal government can lead the way by putting health care provider ACP training on the agenda in all conversations about national health care delivery and education. In particular, it can emphasize the need for professional bodies to set mutually consistent national standards, and for universities and colleges to align their curricula with corresponding training standards and support these organizations in achieving these objectives in a consistent and coordinated way.

   As it has done with respect to many other critical health policy issues, the government can convene and facilitate discussions between stakeholders involved in health care education. It can sponsor research, e.g., through targeted Canadian Institutes of Health Research grants, to identify effective ACP education strategies and further support ACP education initiatives. In 2002-2003, the Canadian Institutes of Health Research deployed over $19 million in funding for palliative care research studies and capacity building. And as part of the development of the 2007 Canadian Strategy on Palliative and End-of-Life Care, the federal government sponsored and contributed to the creation of an interprofessional ACP education module.[31]

3. Promote ACP Best Practices

   The federal government is actively involved in promoting and disseminating end-of-life care and palliative care best practices.[32] For instance, the Palliative and End-of-Life Care Unit at Health Canada ensures that these issues are taken into consideration in relevant federal health policy initiatives. The Public Health Agency of Canada (PHAC), through the Division of Aging and Seniors, provides federal leadership and serves as a focal point for information on public health issues related to ageing and older Canadians.

   As it does in the area of palliative care generally, the federal government can play a critical leadership role in ensuring that the findings from ACP research and experiences are distilled and shared among health care institutions and practitioners. For instance, in 2008, Health Canada collaborated with two health authorities, Alberta Health Services and Fraser Health Authority (British Columbia), that had successfully implemented regional ACP strategies to create an implementation guide to help other authorities “develop or enhance their own advance care planning initiatives.”[33] Health Canada also helped fund the production of a 2009 report on a national roundtable on advance care planning.[34] Expanding the scope and scale of these collaborative activities would be worthwhile, especially with federal leadership, given that recent surveys show there is still much to be done to make sure all Canadian and care providers can become more routinely familiar with ACP.