Opinion

Advance care planning? Your future self might not thank you

My husband and I sorted out our prenuptial agreement, our wills and our powers of attorney on the same day. We left our lawyer’s office with a sense of accomplishment; through careful planning, we had defended against the uncertainty of the future.

Our newly minted documents had lent a bit of the strength we were feeling in that moment to future moments of vulnerability. Those future moments were blurry, though, out of focus. In our late 20s and early 30s (respectively), problems of poor health, marital discord and death seemed only theoretical. I struggled to imagine feeling less healthy, capable and content than I felt at that time.

And so, when contemplating those oft-reported-but-as-yet-unknown-to-me adverse events, I pictured going through them as my then-self, the only self to which I had access, even though it would be a different me, a “sadder and wiser” me, going through those things.

Over the years, I have had reason, thankfully only professionally, to consider the topic of substitute decision-making within health care; to think critically about the powers of attorney that my husband and I had established; to revisit the instructions I had given him regarding how to make decisions for my medical treatment should I become incapable. In so doing, I began to question a fundamental tenet of substitute decision-making – namely that the wishes of my capable self are the best indication of the treatment that I should receive when incapable.

Being incapable to make a treatment decision, according to Ontario’s consent and capacity legislation, means being unable to understand information relevant to the proposed treatment and/or to appreciate the consequences of choosing to have, or forego, that treatment.

There is a temptation to think of one’s incapable future self as the person one is today but only somehow prevented from expressing one’s wishes. However, that approach fails to acknowledge that we may be very changed; an incapable future me would be different, perhaps profoundly different, from who I am now. Whether due to stroke, dementia, mental illness or a coma, the version of me who cannot understand the fundamentals of my treatment options or appreciate what it would mean to have treatment A, treatment B or to allow nature to run its course has undergone significant transformation. I may not perceive the same hardships as intolerable. I may not find the same pleasures delightful.

What if, by expressing a wish for future treatment, I bind myself to a course of action based on values that my now incapable self does not care about at all? What if I tell my husband that as long as I can listen to my favourite music, read a book in the sunshine or hug our children, I would want any intervention that could sustain my life, but when incapable and in need of substitute decision-making, none of those activities brings me much joy?

Conversely, what if, while incapable, everyone close to me says, “The Alex I know would not want to live like this. She would find this state to be undignified,” and yet I, in my state of incapacity, am not at all troubled by the level of care that I require and feel quite content? Whatever is causing me to not understand information about my treatment, or to be unable to appreciate the consequences of a treatment decision, may prevent me from appreciating the extent of my dependence, or to care about it.

Some might say that this is precisely why we need advance care planning – so that I do not let my future self be sustained in a way that my capable self considers undignified. But if my incapable self is entirely indifferent to those once-considered indignities, whose interests are we protecting by honouring this previously expressed wish?

It began to seem to me that instructing one’s power of attorney involved a problem of timing. I could instruct my husband with respect to how to make medical decisions on my behalf, but the instructions could not be contemporaneous with the need for them, nor given by the version of me who needs the help.

While seeking a workaround to bridge my current and future selves, a kind of deus ex machina emerged in the form of a well-known quotation, attributed variously to Shakespeare, the Bible and other sources: The eyes are the window to the soul. Forget specific instructions about various conditions; I would instruct my husband to make my medical decisions according to what he could perceive from my eyes. Even if I were unable to speak, he would know from my eyes if I had had enough. He would be able to see from my eyes if I still derived joy from life or if my days were filled with suffering.

I felt proud of my stratagem, though aware it could only succeed if my husband remained able to carry out this role; I could not expect anyone else to do the requisite soul-searching. Still, I thought the plan was good, deceptively practical and, frankly, romantic. That is until someone problematized it entirely with a few pointed questions. What if, he asked, you were going through an absolutely horrible time and your eyes were communicating pure misery, but everyone around you knew that after a few hard months you would get better? What if your recovery might take years, but you could have decades left to live? How should your medical decisions be made then, if your eyes were pleading for mercy but you could not appreciate the hope others knew to be legitimate?

As I write, I still do not know how best to approach advance care planning and remain concerned that, in its pursuit, we delude ourselves with an exaggerated sense of personal sameness in spite of circumstance.

Ultimately, it seems that there are too many unknowns to give my husband much direction about how to make future health-care decisions on my behalf. The problem seems to have become less about collapsing time and more about accessing knowledge that is, or would be, necessarily foreclosed and yet essential for me to give instructions, or for him to make decisions.

Importantly, there are certain people who do have unique access to such information and I believe advance care planning can serve them well. Those with relapsing and remitting conditions, physical or psychological, that involve periods of incapacity are uniquely positioned to do highly effective planning with respect to future relapses. The experience of going there and back and being likely to go there again allows a vantage from which to say, “This is what I want when I cannot make my own choice.” Additionally, those who know they will eventually enter a state of minimal consciousness may plan for substitute decision-making with less concern that their priorities and preferences when incapable will conflict with their wishes and values when capable.

As for me, I think my husband would make the right decisions on my behalf should the need arise, but not because of any instructions that I have given to him.

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3 Comments
  • Andria Bianchi says:

    Thank you for sharing this thoughtful piece – this is an important contribution to the field of bioethics and beyond. Your perspective perfectly highlights some of the complexities with advance care planning & conceptions of personhood that have been explored by some philosophers for years. Somehow, you’ve managed to bring forward these very complex ideas in a short and succinct piece – an admirable skill! I appreciate you giving this topic a fresh vantage point for those of us working in healthcare to consider.

  • Bob Parke says:

    Thank you for this article and what was written. I appreciate that the author has initiated a conversation about ACP as imprecise as it can be when we are relatively well. Certainly a discussion about values is very important at this point without too much specificity about possible options for treatment. It is hard for the “capable self” to give the “best indication of the treatment that I should receive when incapable.” Yet having a conversation and documenting information like who is the Attorney(s) for care is very helpful especially to the healthcare team if/when the incapable self has an encounter with health care. As we know in healthcare, life is precious and precarious at times so doing the work of ACP is extremely helpful as we never know when it might be needed.

    Of course if time lapses between creation of the ACP and its need we will need to review the documents to ensure Attorneys for Care are still willing and available, update wishes if they have changed and remind SDMs where documents can be found.

    I wholeheartedly agree that ACPs are most easily done in the context of “relapsing and remitting conditions.” When there is a context like heart failure with a series of admissions with experiences of treatments, discharges and declining function it is easier to do much more “effective planning.” In this context ACP can be a gift for the person, if incapable, to better ensure they receive the treatment they want. It is a gift to the SDM as they can have a greater comfort that they are fulfilling the wishes or respecting values of their loved one. I also believe that previous ACP discussions make it easier for healthcare professionals who are proposing treatment options if they know that thinking about future care has been previously discussed, even if the ACP may not seem relevant to the current situation the incapable person finds themselves in.
    Having the range of ACP discussions and when possible documentation can be extremely helpful when there is strained family dynamics and/or strong value clashes which is not uncommon. I commend the author for sharing the work they have done and illustrating the concerns highlighted. For the most part ACP is aspirational and helpful not only complying with a legal process that is several decades old.

  • Judith Wahl, Barrister and Solicitor says:

    I’m not certain that you fully understand what advance care planning is and isn’t. I think you are missing both some of the fundamentals of what ACP is or isn’t and also the details or nuances of the legislation that are often skipped over. I’ m saying this although I do agree with your basic analysis about the difficulty if not impossibility of making any decisions about future care for oneself. This is a brief explanation of what is in the Health Care Consent Act abut ACP and consent. The term advance care planning does not appear in that legislation or in any other legislation in Ontario. Although a patient cannot make decisions about future care , the patient may express wishes about what they think they may want or not want in terms of health care in the future. If the patient is determined by the health practitioner offering a treatment to be incapable to consent or refuse consent to that particular treatment, then the patient’s substitute decision maker (SDM) must make the treatment decision for that patient. When making these decisions the SDM is required to follow the patients wishes IF applicable and if not impossible. If the SDM does not know of the patient’s wishes then the SDM must act in the best interests of the patient. The SDM should not and is not required to just follow the wishes as if the wishes were a command or a final decision rather than just a wish. The SDM must take into account the information they get from the health practitioner about the patient’s health condition, and the treatment options, the risks and benefits of the treatments, whether there is an alternative to the treatments offered and what would happen if the treatments offered were refused. The SDM also has a number of other responsibilities. The SDM must determine what are the patients last wishes expressed while still still capable, whether in writing, or stated orally or communicated through alternative means such as assistive devices. Later wishes trump the original wishes even if the wishes had been in a written form. Next the SDM must consider whether those last expressed wishes are relevant to the decision to be made or if the wishes are impossible to follow. One example of a wish that might end up being impossible is a wish never to live in a long term care home . That wish can only be fulfilled if the patient can get at home the care they need either through public or private resources, whether the patient has people that can provide or supervise this care, and whether the patient has the money to be able to afford to pay for the care if there are costs as well as the other expenses related to remaining at home. Next the SDM must interpret what the patient meant by that last wish. A lot of wishes may be interpreted in more than one way depending on the patients present condition when the decision must be made. The SDM should not follow the wishes blindly but must think about how the wishes apply to the decision at hand based on the patients present condition. AND IF the SDM believes that if the now incapable patient was still capable in the present time and knew what their health condition would actually be and knew the treatment options and the risks, benefits etc of those treatment and that the patient if capable would have then made a different decision than that as wished, then the SDM may apply to the Consent and Capacity Board to override the last capable wish of the patient. If the SDM believes that the wish is impossible to follow they do not need to go to the CCB but can then just not follow that wish but instead make the decision that is in the best interests of the patient. So the SDM must make decisions for that incapable patient IN CONTEXT of the patients present condition and with the information that the health practitioner is obligated to provide to the SDM before making any decision, as well as determining if the last wishes apply on that context. The big problem is that health practitioners may fail to provide all the information to the SDM or even to the capable patient for either of them to make a truly informed decision. Or the SDM or patient or both or the health practitioner do not understand this requirement for informed consent or how wishes apply or don’t apply. People too often think advance care planning is actual decisions rather than wishes . Then the SDM who believes that is very conflicted if they think the wishes are not applicable or impossible to honour. I’ve been told by some health practitioners that they think the patient’s wishes are directions to them so they don’t need to get informed consent from the incapable patient’s SDM. Or the health practitioner thinks that wishes in writing override wishes expressed orally or by alternative means even if it’s clear that the patient when capable had changed their minds after making the document so the document does not represent the patients last capable wishes. Or the health practitioner disagrees with the SDMs interpretation or relevance or not of the wishes when making the decision so they think that they can just make the decision for the patient themselves and ignore the SDM. The Health Care Consent Act does include a provision that if the health practitioner is not following the patients last capable wishes they can apply to the Consent and Capacity Board and ask them to direct the SDM to follow the wishes or be removed as SDM. Some health practitioners do make these applications but others do not want to appear before that Board so then try to work around or ignore theSDM. I have done a lot of education of health practitioners about Informed Consent and about what Advance care planning is and isn’t so I am sympathetic to their lack of knowledge about the law. They may not be able to apply this correct knowledge because the health facilities they work at require them to do something different when getting decisions from patients or their SDMs. When I and two others did a research study on whether the forms, records, policies of various health facilities correctly reflected the Health Care Consent Act , we found that all 100 facilities or health services that provided us with their forms, records and policies contained legal errors that would mislead health practitioners and not support them to follow the Health Care Consent Act in the correct way. ALL 100 sets if forms, records and policies. I also do education for lawyers and I have found many of them, from small practice settings through to major law firms, do not understand what the Health Care Consent Act actually states. The misunderstandings are deeply embedded and appear all over the place even in the websites of health organizations and hospitals. Many long term care homes require their residents to complete some form of advance care planning, some of which are particularly terrible like the Level of Care forms, and are not stopped from doing this even when inspected by the Ministry of Long Term Care, I realize that this is a long comment but I hope readers of your article will also read this comment that supplements your article. I should say I am confident in my explanation of all of this because I worked on the committees that developed the original consent to treatment legislation, then after that legislation was replaced by the Health Care Consent which was substantially the same as the original legislation I presented on this legislation at numerous continuing education programmes for both lawyers and health practitioners, particularly doctors, I also co wrote a guide to consent and advance care planning that was part of one of the Physicians Education Alzheimer’s initiative funded by the government in 2001. I then along with a physician , taught the contents of that guide to physicians in many locations all around Ontario. I also co wrote two research studies related to this material for two different projects of the Law Commission of Ontario. I have other relevant credentials but I hope this is sufficient.

Author

Alexandra Campbell

Contributor

Alexandra Campbell is a fellow in clinical, organizational and research ethics with Unity Health Toronto. Before entering the field of bioethics, she worked as a lawyer for several years.

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