A reflection on advance care planning

By Andria Bianchi

National Advance Care Planning (ACP) day was on April 16, 2019. The purpose of ACP day is to encourage people to have discussions about their values, wishes, and beliefs in relation to their health and personal care. For many, ACP is a difficult (and, perhaps, taboo) topic since it involves having conversations about and/or documenting how a person would like others to make potentially life-altering decisions for them just in case they become incapable of making healthcare decisions for themselves. Given that a person of any age may become unable to make healthcare decisions for various reasons (e.g. temporary cognitive impairment, lack of consciousness, a dementia diagnosis, etc.), ACP is, indeed, important.

I have engaged in a few conversations with colleagues, friends, and family members about ACP since April 16th. Perhaps unsurprisingly, most of the people who I spoke with have not yet developed written advance care plans; written plans are not entirely essential, however, and having conversations are, arguably, even more important. The one surprise that I did encounter is that some people are hesitant to develop a plan and/or to have a conversation— I will reflect on this perspective below.

One of the reasons that ACP is often seen as important is because it allows people to communicate autonomous decisions about their health and personal care when they are capable of doing so. So, if I value having the opportunity to make an autonomous decision about how I do/do not want to live, then informing others about my choice(s) just in case they become the decision-maker(s)/in case I lose my capacity seems sensible. For instance, an ACP conversation may involve informing my loved ones about whether I do/do not want to live in a circumstance in which I am not expected to ever breathe or eat on my own, whether I would want to live in a ‘risky’ situation at home instead of being in a hospital facility, etc. ACP may also involve the development of a power of attorney for personal care if I want to assign a particular person(s) to be responsible for making personal care decisions for me. Ultimately, ACP is usually recognized as an important step to take in order for a person’s autonomy to be respected at all stages of their life.

Another commonly expressed reason for engaging in ACP discussions is because some people may want to alleviate potential burdens/stresses on family members, which can inevitably result from having to make life-altering decisions for other people. I may want to engage in an ACP discussion so that my decision-maker(s) can feel more confident about making challenging healthcare decisions just in case I lose the capacity to make them for myself.

One of the primary reasons that some people expressed reluctance about having and/or documenting ACP conversations reflects a common philosophical problem about personhood/personal identity. The argument goes something like the following: “It is impossible for me to engage in a meaningful ACP process at the present time because I have no idea what I will/will not want to receive at a future point in time (i.e., when I am incapable).” So, ultimately, the argument is that I will be a different person in the future, and I cannot make an informed decision about my future self right now.

I have thought a lot about this argument against ACP over the last few years. On the one hand, it is true that a person can only make decisions based on their current self/state of mind. And this might lead someone to suggest that ACP is, in fact, not sensible since (1) a person does not know the particular decision(s) that will need to be made at a future point in time and (2) a person does not know if their wishes will change. On the other hand, however, ACP does not have to be a one-time conversation that cannot be revisited. ACP can be an ongoing dialogue, allowing one to revisit and reflect upon their wishes as time progresses. Furthermore, and perhaps to the comfort of some, ACP does not need to involve a person communicating very specific healthcare decisions. Instead, ACP can involve articulating a person’s values and beliefs to help decision-makers make decisions accordingly. So, rather than making very specific healthcare decisions, I might choose to articulate my personal, cultural, and/or religious values and beliefs that could be relevant to healthcare decision-making processes. Then, if I ever lose my decision-making capacity, decision-makers would be responsible for making decisions in relation to my values and beliefs while taking into account the relevant context (which cannot be foreseen at the present time).

Articulating personal values and beliefs may seem less daunting to individuals who are unaware of and/or overwhelmed by the many healthcare decisions that might be relevant to a future point in time. At the same time, it preserves an aspect of autonomous decision-making by allowing people to contribute to future healthcare decisions (or, the decision-making process) just in case they become incapable.

Andria Bianchi PhD, is a Bioethicist at University Health Network.