Preparing for Future Periods of Incapacitation

At times like this, aren’t you glad that we’ve learned from past viral pandemics and we have a Federal Government and Public Health Agency that are prepared to deal with the current crisis? Preparation, communication and coordination are the keys to navigating through these difficult times. The same applies to difficult times we might face in our personal lives. In the past, I have spoken about the importance of thinking ahead, planning ahead, and communicating your values and preferences for medical care so you were ready to deal with any health crisis that emerged. Recently, I had an interesting meeting with a lawyer that expanded my personal views of planning for your future medical care. I met with Jan Goddard of Goddard Gamage legal firm in Toronto, Ontario. She has expertise in wills and estate planning and is commonly involved in resolving conflicts that arise due to inadequate planning. We noted that the legal involvement in planning for end of life care arose because of the advent of technology that altered the natural dying experience and people wanted a mechanism to take back control of how they died.

I was highlighting to Jan how I feel there are many gaps within the current legal system, that are really causing a disservice to Canadians. The issue I have is around how the legal system embeds instructional medical directives, which are often times very difficult to operationalize and not helpful to us as clinicians since they are framed under conditions of certainty (example, “when I am in a persistent vegetative state, I don’t want to be kept alive on machines”). In contrast, we as physicians don’t know with certainty when people are dying when we have to make decisions about the application of life-sustaining technologies (See blog for more details on my concerns about what the legal profession is doing). I was explaining how Plan Well Guide focuses on preparing people (the future patient or their Representative) for future periods of incapacitation and we help people systematically record their authentic values and informed treatment preferences, that will be useful to them when called upon to make future medical decisions when seriously ill. When we refer to the term, serious illness, we mean an illness that is serious enough that you could die. However, at the point of decision-making, there is uncertainty of the outcome of death.

 This is different from terminal illness where there is certainty of death. She seemed to agree with the new paradigm, around planning for future serious illness vs. planning for certain death along with new approaches such as the use of constraining values clarification tools and values-treatment grids to further prepare the person to make better treatment decisions. But then she said to me, “you know Daren, it’s not all about preparing the person to articulate their future medical treatments. Most of the conflict that leads to lawyers getting involved has to do with arguments over how the person would want to live while incapacitated.” She explained that when a person becomes incapacitated but is still alive, an example of this could be after a severe stroke or onset of dementia, this individual’s powers of attorney(s) now have to make decisions for them. They are involved in a variety of decisions such as where the person should live, what kind of clothes they should wear, and what kind of foods to eat or not eat. She sees lots of cases where families disagree with what is in the best interests of this incapacitated individual. Generally speaking, some want to spend more money to ensure their loved one gets the best care possible, while others want to spend less money, arguing what is the point given their incapacitated state. They are thus unable to resolve their differences which is when legal challenges are launched to try and resolve the matter. At the core of the issue is what would be the wishes/values of the now incapacitated individual. What would they have wanted and often times, the person has not articulated or documented these wishes. She stressed the importance of thinking about and documenting your wishes for how you want to live if incapacitated (see box for questions you need to answer).

If you had a stroke or brain injury and were alive but now unable to care for yourself,

  • How would you want to live? (high quality vs. low quality vs. not important)
  • Where would you want to live? (Stay in home vs. institution vs. not important)
  • What would you want to eat/ not eat?
  • What kind of clothes would you want to wear?

Since you may not be able to define all pertinent or relevant conditions applicable to your future, it may be important to give guidance to your attorneys by answering the question below: 

You could think about recording your answers to these questions as part of your advance care medical plan, either in writing or capture a video of yourself expressing your wishes, in your own voice, of how you want to be looked after when you are incapacitated.[i] It is essential that you express your wishes to your family who will be responsible for implementing your wishes. While the person you designate as ‘power of attorney’ will have the legal responsibility to implement your wishes, conflict often arises between them and other family members, as such it is critical that your wishes and plans are clearly documented to help reduce the likelihood of conflict.

For more on using video to capture advance medical care plans, see this blog and this website.

For more specifics on how to craft Power of Attorney documents to avoid abuse and exploitation, see this document and/or podcast from a lawyer working for the American Bar Association.

During this illuminating conversation with Jan, the aforementioned lawyer, I realized that Plan Well Guide does not address this aspect of planning. At Plan Well Guide, we commit to adding content and tools to our planning website in the coming months. This will allow you to not only plan for future medical treatments, but also be able to plan for how you want to live if incapacitated. This anecdote illustrates the immense value in having lawyers and doctors working together with the best tools and strategies available in order to help YOU; our clients and patients or future patients, get the best medical and personal care that is right for you when you are sick and incapacitated.

[i] Chan, H.Y. Video Advance Directives: A Turning Point for Advance Decision-Making? A Consideration of Their Roles and Implications for Law and Practice. Liverpool Law Rev (2019).

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