Planning Well for Future Care
Creating a Thoughtful Framework for Personal Care Decision-Making
In late February 2020, Goddard Gamage’s managing partner Jan Goddard and I had the pleasure of sitting down with Dr. Daren Heyland to learn about a tool he has developed for future care planning.
Dr. Heyland is a critical care physician and researcher at Queen’s University. In concert with medical and legal professionals, he created the Plan Well Guide, which he describes as a roadmap to advance health care decision-making when you are seriously ill and unable to make decisions. He developed the guide after decades of experience in critical care, where he saw countless distressed families struggle to determine what type and extent of medical care their loved one would want to receive in a range of circumstances.
The Plan Well Guide is meant to prepare patients and their substitute decision-makers for exactly these circumstances, which process begins with considering a person’s values in depth in advance and thinking critically about how those values will intersect with the care options available.
This type of critical thinking about future care decisions pertains not just to end of life decisions, but also to treatment and health care decisions that affect patients longer term, which they may not otherwise turn their minds to. In other words, these are decisions not only about a person’s last few weeks or months, but possibly years or even decades.
All of these considerations are particularly topical now, as we collectively face major health care challenges in the face of COVID-19, with doctors and other medical professionals being forced to treat an unprecedented number of patients, many of whom have life threatening symptoms.
That said, thoughtful and critical planning for future care is always relevant, not only for health care decisions, but for all facets of personal care decision-making. This blog will describe why this matters, what other issues you should consider when thinking about personal care planning, and provide a brief overview of why we think the Plan Well Guide is a great tool to consult if you or a loved one is working on their future planning.
Making a Power of Attorney Doesn’t Make Tough Decisions Disappear
You may think the purpose of the Plan Well Guide is already accomplished if you have a power of attorney for personal care. That is not necessarily the case.
A power of attorney for personal care is a document that authorizes someone else to make personal care decisions for you if you are incapable of doing so, ranging from health care to housing to other aspects of your personal life such as meals or clothing.
Your power of attorney might be a simple document that names your attorney and grants that person the power to make any personal care decisions for you that you are mentally incapable of making, including the giving or refusing of consent to any matter to which the Health Care Consent Act, 1996 applies, subject to the Substitute Decisions Act, 1992.
Alternatively, you can make a power of attorney that is much more detailed and includes a statement of your wishes for living with incapacity, or for end of life care, or really any other matter that you wish to articulate for your substitute decision-maker in writing.
However, there may be a gap between what you assume you have accomplished in preparing and executing powers of attorney and reality of the practical decisions that your attorney will make months, years, or even decades in the future.
For example, although you have granted substitute decision-making power for personal care matters to a trusted friend or family member, have you had a frank discussion with that person about how you want to live, not just in the last weeks or months of your life, but during the last five or ten years? This extends to how and where you will reside, who will assist you with activities of daily living, who you want to have visit, and how you want your money to be spent on personal care. Conversations with your attorney aside, it may be the case that you, even privately, have not turned your mind to these matters.
Dr. Heyland noted to us that when people are asked about what care they might want to receive in the future, it is common for them to assume the question refers only to what care they want to receive on dying (for example, “keep me comfortable”). In fact, there are many and varied facets of health care and treatment decision-making to consider.
A Value Based Approach to Preparing for Future Care Decisions
Dr. Heyland’s hope is that the Plan Well Guide can “break down the silos” between medical, legal, and other professions. In other words, he hopes a person’s values will be clearly communicated, within the confines of what lawyers can include in power of attorney documents, so that their attorney(s) for personal care can guide medical professionals and make decisions congruent with those values.
There is a significant educational component to the Plan Well Guide in order to do so. It functions as a tool for its users to understand the difference between a terminal versus a serious illness, as well as to contemplate the possibility of recovery.
To that end, its website includes videos that show users the reality of what cardio-pulmonary resuscitation (CPR) entails so that patients (and their family members or substitute decision-makers) can meaningfully consider whether that is a treatment decision that is appropriate or desirable for the patient in their particular circumstances.
Similarly, Dr. Heyland’s article “Are You Prepared for Serious Illness?” written to address the current COVID-19 crisis, lays out what is a serious illness and walks readers through assessing their values in terms of the extent and nature of treatment options that they would want used on themselves if they fell seriously or terminally ill. The assessment is on a sliding scale from 1 (“I want medical treatments that focus on prolonging my life”) to 7 (“I want medical treatments that focus on maintaining the quality of my remaining life”).
Dr. Heyland reminds readers that they “are not making a medical decision when you go through this process, you are preparing to make a medical decision.” This preparation, including important distinctions in prolonging life versus preserving quality of life, will help patients and their loved ones communicate values to doctors and process the responding recommendation, particularly in situations like what we are currently experiencing, where the medical profession and resources are overburdened and there is not time to examine one’s values at length before making a decision.
There are many circumstances in which someone else may need to make personal care decisions on your behalf. It is important for you to think about how you want those decisions to be made, not just who you want to have make the decisions. We encourage you to talk about all of these issues with the lawyer who you choose to help you with your powers of attorney.
The Plan Well Guide is a great tool for understanding why applying a value-based approach to preparing to make personal care decisions will help you, your doctor, and your substitute decision-maker(s) in the long run. We encourage you to look at the Plan Well Guide as you think about these issues.
More on Dr. Heyland's work :