Background: This study aimed to measure the level of involvement of Canadians in preparing for incapacity and death and to explore facilitators and barriers.

Method: The authors used an online survey based on the social cognitive theory and the Stages of Change model.

Results: One-hundred and forty-eight participants took part. The main facilitators were avoiding burdening others and reducing conflicts. Some respondents thought legal planning did not apply to young and healthy people. Some did not trust lawyers.

Conclusion: The authors suggest that more people would trust lawyers if they knew the limits of legal documents and if they worked with medical experts.

Introduction

Individuals should have a medical plan in place, name someone to speak for them and make decisions for them if they are unable to do so and leave instructions for this person in case they become incapacitated or die. Legal documentation regarding incapacity and death enables individuals to make and record decisions in advance (Orsatti 2022). Studies conducted in Canada and the US demonstrated that people are more likely to talk to a lawyer regarding their medical plan than to a physician (Orsatti 2022; Ries et al. 2018). A survey completed by 104 lawyers based in Alberta (Canada) demonstrated that these legal professionals think that assisting clients with preparing relevant legal documents related to healthcare is an important part of their role (Ries et al. 2018). However, despite survey after survey, less than half of Canadians have completed their incapacity and death planning (Hewson 2021). So, why do Canadians not plan for incapacity and death, even though there are government and private campaigns to get people to make a will and plan ahead for healthcare?

Decades of research in behavioural psychology have shown that human behaviour is complicated and that measuring only the result of a process can be misleading when it comes to judging the success of an intervention, such as public campaigns to get more people to make legal plans for incapacity and death. Indeed, complex behaviours are made up of many smaller behaviours, or “micro-behaviours,” which should be tracked to figure out where a person is in the process of changing their behaviour and to create targeted interventions (Glanz and Bishop 2010; Michie and Abraham 2004; Sheeran et al. 2017).

The social cognitive theory posits that humans can learn new behaviours either through direct experience or by observing others. According to the social cognitive theory, adopting a new behaviour involves four processes: (1) knowledge or understanding of the significance of the behaviour, (2) contemplation of engaging in the behaviour, (3) confidence or self-efficacy to complete the behaviour and (4) readiness to complete the behaviour. External and internal factors and the nature of the behaviour also influence whether the person will learn the new behaviour at a specific moment (Bandura 1977). Another well-established theory – the Stages of Change Model – posits that humans go through five iterative steps to achieve behaviour changes: pre-contemplation, contemplation, preparation, action and maintenance (Prochaska and Velicer 1997).

Research in implementation science suggests that a crucial first step when implementing a new behaviour is to assess the facilitators and barriers to the adoption of the behaviour (Bennett et al. 2010; Graham and Tetroe 2010). Indeed, in order to develop targeted strategies aimed at improving legal planning for incapacity and death, we must first assess people's current level of engagement. To our knowledge, no studies have assessed lay people's level of engagement with legal planning for incapacity and death and their perceived facilitators and barriers to adopting the targeted behaviour.

Our main objective was to assess the level of engagement of a sample of Canadians in seeking legal services to plan for incapacity and death. Our secondary objective was to explore facilitators leading to action and barriers hindering action.

Methods

This is a mixed-methods secondary analysis of anonymous data collected through an online survey for quality improvement purposes. Research ethics board review is not required for research that relies exclusively on the secondary use of anonymous information (Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, Social Sciences and Humanities Research Council 2019).

Survey context

In the survey, we defined legal planning for incapacity and death as the completion of legal documents (e.g., advance medical directive, power of attorney and will) with a lawyer aiming to plan for incapacity and death. Data were collected from July 2019 to April 2021. The study population comprised a convenience sample of users of our planning tool, Plan Well Guide (www.planwellguide.com). The Plan Well Guide is a free online tool with easy-to-use educational exercises that helps people discover their values, define their goals and communicate their wishes for future medical and personal care with their loved ones, decision makers and healthcare providers (Heyland et al. 2020). An unknown number of people who used our online services got an e-mail inviting them to take the survey.

Development of the legal planning engagement survey

We developed the legal planning engagement survey based on the Advance Care Planning Engagement Survey (Sudore et al. 2014). The Advance Care Planning Engagement Survey uses the social cognitive theory (Bandura 1977) and the Stages of Change Model (Prochaska and Velicer 1997). With the help of several legal experts, we first conducted an exercise aimed at breaking down the broad concept of planning for incapacity and death into subdomains and targeted actions (Table 1).

Based on the social cognitive theory and the Stages of Change Model, we conceptualized that the behaviour change-related factors of knowledge, contemplation, confidence and readiness are required to complete each subdomain. For each subdomain, we developed closed-ended questions to find out how involved the participants were and open-ended questions to find out what stopped them from moving forward with the desired behaviour or why they did it.

Final survey

The final survey contained six sections (See Appendix 1, available online here).

• Section 1: This section included the respondent's perception of their knowledge of the legal procedures and documents necessary to protect themselves, their loved ones and their assets in the event of their incapacity or death using a five-level Likert scale (scale range: 5–25 [high–better knowledge]).
• Section 2: This section included the respondent's level of contemplation of the behaviours we aimed to influence using a five-frequency Likert scale (scale range: 5–25 [high–better level of contemplation]).
• Section 3: This section included the respondent's self-confidence to move forward in the three desired behaviours using a five-level Likert scale (scale range: 3–15 [high–better confidence]) and an open field about the reasons for their lack of confidence.
• Section 4: This section included the respondent's readiness to engage in the desired behaviours using a five-level Likert scale (scale range: 3–15 [high–better readiness]) and three open fields about their lack of readiness to move forward with the desired behaviours, if applicable.
• Section 5: This section included the open questions about the respondent's reasons for not hiring a lawyer to draft and finalize legal forms or their main motivations for not doing so.
• Section 6: This section included socio-demographic questions (gender, age, level of education and province).

Analysis

To reach our first objective – i.e., to assess the level of engagement of a sample of Canadians in seeking legal services to plan for incapacity and death (advance medical directive, power of attorney and will), we measured basic descriptive statistics to calculate the score for each Likert scale for each behavioural process change and the overall score (mean, standard deviation, median, interquartile range and minimum–maximum).

To reach our second objective – i.e., to explore facilitators and barriers, we completed a two-phase summative thematic analysis inspired by the Framework Method (Ritchie et al. 2013). With this method, the content of the open fields could be turned into a structured dataset. In the first phase, the main researcher developed one list of barriers (e.g., costs, competing priorities) and one list of motivations or facilitators (e.g., significant life events, advanced age). Then, two researchers independently classified the material. Afterward, the main researcher reduced the lists to keep only the five most frequent barriers and five most frequent facilitators. In the second phase, the two researchers independently determined the barriers and motivations applicable to each of the participants. Then, we merged similar items, creating themes (e.g., facilitators related to others, barriers related to finance).

Results

In our sample of 148 participants, most (59.5%) were female. The mean age was 60.4 years (standard deviation: 13.2). Three-quarters of the participants (75%) had completed a university degree. Residents of seven out of 10 Canadian provinces participated in the study (Table 2).

Level of engagement

Most of the people who took the survey were very involved in making legal plans for incapacity and death. In all, 108 respondents (73%) indicated that they had hired a lawyer to assist with drafting and finalizing their legal preparation, but 40 (27%) indicated that they did not get involved in this behaviour. The median scores for all items were 4 or 5 (maximum score being 5), except for the items about the respondent's knowledge about “what questions to ask a lawyer about planning for incapacity or death” and contemplation of the micro-behaviour of “asking a lawyer about planning for incapacity or death,” both of which yielded a median score of 4 (maximum score being 5) (see Table 3, available online here).

Facilitators leading to action

In total, 137 participants (92.5%) replied to the open question about their main reasons (or motivations) for hiring a lawyer to draft and finalize legal forms regarding incapacity and death (advance medical directive, power of attorney and will).

FACILITATORS RELATED TO IMPACT ON OTHERS

A frequent motivation was to avoid burdening others and reduce family conflicts:

The less stress my family has to experience in an unexpected or critical situation the better.

I don't want to be a burden to my family/friends who I am asking to assist in the event of severe illness or death.

FACILITATORS RELATED TO A LIFE MILESTONE

Another frequent theme was that a personal life event or health condition (death of a loved one and having children, disease or advanced age) triggered respondents to seek legal help for planning for incapacity and death:

The loss of my wife in ICU made me realize the importance of having a will and personal directive and ensuring both are up-to-date.

Long-term chronic disease and illness [made me do it]. [I a]lso take medication that can cause lower immunity and [increase risks of] infection.

Some also referred to the COVID-19 pandemic:

Turning 71 plus the added threat of COVID-19 [made me do it]. [I h]ave realized that situations change very quickly and being unprepared can make a bad situation worse.

FACILITATORS RELATED TO FUTURE ILLNESS SCENARIOS

Wishing to be involved in care decisions was also stated as a motivation to seek legal help for planning for incapacity and death:

If I am incapacitated, I want my family to know what my wishes are.

I want to be in control, until I am no longer able to do so.

Barriers hindering action

Fifty (33.8%) of the people who took the survey answered the open-ended question about why they did not hire a lawyer to write and finalize their legal plans for incapacity and death.

FINANCES

One of the major themes emerging from the analysis was a lack of financial resources and the expectation of high lawyer fees:

Despite being aware of its value, financial costs prohibit me from pursuing legal advice at this time.

I'm worried it would be terribly expensive.

APPLICATION TO SELF

Being young and healthy or not having assets or dependents was also a frequent reason not to have hired a lawyer to draft and finalize legal planning regarding incapacity and death:

Death is a non-issue as I have no dependents or significant assets.

I don't need a will as I have no assets and no dependents.

I guess I am healthy and young, and it has never become a priority yet.

LACK OF CONFIDENCE IN LAWYERS

Another emerging theme was the lack of confidence in lawyers in general or in their capacity to help them plan for incapacity or death:

Lawyers are good with estate and financial planning but not health directives.

Most lawyers do not do a good job on [planning for incapacity and death] and don't give enough advice on these documents unless the client is rich.

Lawyers are evil, not trustworthy.

Discussion

Level of engagement

In our sample of 148 respondents, 108 (73%) indicated that they had hired a lawyer to assist with drafting and finalizing their legal preparation for incapacity and death. In Canadian surveys conducted in 2020 and 2021, the proportion of Canadians who reported having an up-to-date will ranged from 33% to 46% (Hewson 2021; Yih 2020). This difference between our results and those observed in previous surveys may be linked to our recruitment method through a website dedicated to advance serious illness planning (ASIP). Since they had just finished planning ahead for a serious illness, our participants were likely to be more proactive in their planning. Nevertheless, their responses to other questions yielded important insights.

Except for the items regarding the respondent's knowledge about “what questions to ask a lawyer about planning for incapacity or death” and contemplation of the micro-behaviour of “asking a lawyer about planning for incapacity or death,” both of which yielded a median score of 4 (maximum score being 5), all other items yielded a median score of 5. These results suggest that the professional–client relationships in the law field are still a traditional model where clients go passively to lawyers and do what they tell them to do and are not actively involved in the process. However, legal professionals and their clients would benefit from embracing participatory models of professional–client relationships. The participatory model involves the client's active effort to be informed and to share responsibility, leading to mutually agreed-upon choices (Kidder and Rosenthal 1976). From our results, it appears that people may need more support in learning what questions to ask and how to best engage with lawyers in planning for incapacity or death.

Facilitators leading to action

We found that a frequent motivation for legal planning was a life milestone, such as having children or the death of a loved one. These results are consistent with those of a survey that showed that Canadians tend to complete a will when they experience one of life's major events, such as having a child or experiencing a change in marital status (Yih 2020). Another frequent motivation to seek legal help to plan for incapacity and death was the wish to be involved in care decisions in case of incapacity and to avoid putting a decisional burden on others. This is consistent with the social cognitive theory, which states that environmental factors such as social norms are facilitators leading to action (Bandura 1977). Nowadays, avoiding burdening others is a strong social norm. Self-perceived burden is linked to suffering, loss of dignity and a “bad death.” It has also been noted as a significant factor in clinical decisions, such as advance directives and the decision regarding where to receive care at the end of life, among patients who have life-threatening illnesses (McPherson et al. 2007).

Barriers hindering action

One thing that kept coming up as a barrier to action was that people thought the behaviour being targeted did not apply to them because they were young, were healthy or did not have much money. According to the social cognitive theory, such barriers are linked to misconceptions or a lack of knowledge regarding the targeted behaviour and may prevent further action (Bandura 1977). According to an article (Bruineman 2018) about the Canadian Legal Fees Survey, the cost of a simple will is around $300–$400, while the cost of a single power of attorney is around $150–$200, and the cost of a healthcare power of attorney is around $100–$200 (Bruineman 2018). Whether these fees are fair or not depends on an individual's budget and values. However, the perceived loss of money that cannot be gained back (as opposed to an investment) is a well-documented barrier to the adoption of a new behaviour (Gaspar 2013).

Another emerging theme was clients' lack of trust in lawyers in general or in their ability to help them plan for incapacity and death. For the past two years, the Institute for Trust in Organizations (https://institutdelaconfiance.org/) – a Canadian non-profit, neutral and independent think tank – has been measuring how much Canadians trust different professions. In 2021, the job of a lawyer was ranked at 27 out of 40 jobs, which was six points lower than in 2020 (Institut de la confiance dans les organisations 2020).

Application for Research and Practice

In 2004, in a ground-breaking publication, the American philosopher Angela Fagerlin and the law specialist Carl E. Schneider called for the abandonment of advance medical directives, except for patients whose health crisis is imminent. However, they emphasized the importance of naming a supportive decision maker (Fagerlin and Schneider 2004). More than a decade later, the American Bar Association on Law and Aging stated that the most important legal element of incapacity planning is to attentively select and appoint a supportive decision maker in a valid document. They also emphasized that discussions (with lawyers) should focus on one's values, goals and priorities in the event of worsening health rather than on specific treatments or clinical interventions for distant hypothetical situations (American Bar Association 2017).

Indeed, advance medical directives might be important for patients with incurable cancer at the end of their lives, but they are not relevant during a serious illness. In situations such as a heart attack or bad COVID-19 pneumonia when patients are hospitalized, there is a probability of dying but also a probability of surviving (Heyland et al. 2020), but most patients are not capable of communicating (Bibas et al. 2019) during these serious illnesses. Healthcare providers will turn to the patient's supportive decision maker to help them make informed goals-of-care decisions. However, legal planning documents completed under conditions of certainty are not helpful to inform clinical decisions during a serious illness and may result in medical errors and certainly add to the stress of the family members (Moorman et al. 2020; Periyakoil et al. 2022). The misalignment between a patient's values and preferences and the decisions made by their supportive decision maker is well-documented (Heyland et al. 2017). Indeed, what do “severe, permanent impairment,” “no heroic measures” or “vegetative state” mean? There are many “shades” of neurological impairment, and healthcare providers will have difficulty operationalizing these wishes. As such, legal planning documents do not allow the patient's wish to be involved in care decisions to come true. To truly realize its fundamental purpose of extending individual autonomy beyond one's ability to maintain their competence (Sabatino 2010), we recommend that lay people, who are planning for incapacity, gain understanding of the various types of care, elucidate their own values and preferences and empower a supportive decision maker for future meaningful communication with healthcare professionals.

We recommend lawyers to improve their practice through the concept of ASIP. Started at any age or health condition, ASIP engages people to reflect on their values and highlight the trade-off with competing values. Questions such as these are asked: “Are you the kind of person who wants medical treatments to focus on prolonging your life or enhancing the quality of your remaining days?” “Are you the kind of person who prefers a natural death or are you willing to accept the use of machines, such as breathing machines, to prolong your life for as long as possible?” The answers to these questions will allow their future physicians, during a health crisis, to link stated values to medical treatments that could be proposed to treat serious illness in a reliable and transparent way, thus reducing medical errors. As part of serious illness preparations, we suggest a more systematic use of decision aids, such as the Plan Well Guide, that are useful in informing patients about the risks, benefits and possible outcomes of the different treatment options. In a recent randomized trial, this approach was shown to improve decisional quality, reduce physician time and resulted in both physician and patient ratings of satisfaction and endorsement (Heyland et al. 2020).

In a close relationship, like the one between a lawyer and their client, trust is an important part. Lawyers must recognize that their skills differ from those of medical professionals and ensure that each client consults with a qualified medical professional to discuss and develop their advance healthcare plans. However, lawyers can help normalize ASIP discussions, make such planning more widely available and offer an alternative way to start end-of-life conversations and prepare documents (Orsatti 2022).

Strengths and Limitations

This is the first study, to our knowledge, to scientifically assess the level of engagement of Canadians to plan for incapacity and death with a lawyer. We applied well-known behavioural theories to explore a new field of research, namely, empirical research, on lay people's level of engagement regarding planning for incapacity and death. The body of literature regarding the level of engagement of patients in planning for incapacity was created mostly in the context of healthcare. A similar body of literature is yet to be developed within the legal context (Ries et al. 2016, 2018) or in collaboration between experts in the two fields. Ries proposed a continuum for interprofessional collaboration that eventually connects the health and legal professions (Ries et al. 2016).

Our population sample was highly educated and was recruited following the completion of ASIP. Our results might therefore not be representative of the Canadian population. Due to our recruitment method, it was not possible to estimate how many people were invited to reply to the survey; thus, it is not possible to calculate the proportion of those who responded.

Conclusion

In our sample, respondents were moderately engaged in planning for incapacity and death. A frequent motivation to seek legal advice was to avoid placing a decisional burden on others and to wish to be involved in care decisions in the event of incapacity. This is consistent with the global objective of the advance directives movement, which is to extend autonomy beyond an individual's ability to maintain their competence. But research shows that choosing and empowering a supportive decision maker is the most important part of legal planning for incapacity. However, legal professionals are not well informed on how to empower a supportive decision maker to get them ready for future medical decisions (neither on types of care available to prolong life nor on the risks, benefits and outcomes of such life-sustaining technologies). An emerging barrier to planning for incapacity was the lack of trust in lawyers in general or in their capacity to help them plan for incapacity. We suggested that acknowledging the limits of legal documents to inform medical decisions and collaborating with medical experts in this field could help enhance the trust the population holds toward lawyers. Medical decision aids for advance serious illness preparations and planning, such as the Plan Well Guide, aim to overcome many of these barriers by working with lawyers and lay people to better prepare for future incapacitation and death.

Correspondence may be directed to: Ariane Plaisance. Ariane can be reached by e-mail at arianeplaisance@gmail.com.

Dans quelle mesure les Canadiens s'intéressent-ils à la planification juridique en cas d'incapacité ou de décès? Une enquête à méthodes mixtes

Résumé

Contexte : Cette étude vise à mesurer le degré d'implication des Canadiens dans la préparation en cas d'incapacité ou de décès, et à en explorer les facteurs favorables et les obstacles.

Méthode : Les auteurs ont eu recours à une enquête en ligne fondée sur la théorie cognitive sociale et sur le modèle des étapes du changement.

Résultats : Cent quarante-huit participants ont répondu à l'enquête. Les principaux facteurs favorables étaient d'éviter l'accablement pour les proches et de réduire les possibilités de conflits. Certains répondants estimaient que la planification légale ne s'appliquait pas aux personnes jeunes et en bonne santé. Certains ne faisaient pas confiance aux avocats.

Conclusion : Les auteurs suggèrent que davantage de personnes feraient confiance aux avocats s'ils connaissaient mieux la portée des documents juridiques et s'ils faisaient affaire avec des experts médicaux.

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