Preparing for Future Periods of Incapacitation

Many people plan for their death by creating a will, and prepaying for their funeral. But what is less common is planning for the possibility of becoming incapacitated. However, planning for incapacitation is just as important. If one fails to plan, it can cause a lot of strife and conflict amongst their loved ones.

Legal Planning in End of Life Care

Recently, I had an interesting meeting with a lawyer that expanded my perspective 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 talked about the apparent trend that legal involvement in planning for end of life care is on the rise. Because of advanced technology, natural dying experiences are becoming less common. It seems that people want to take back control over how they die.

I was explaining to Jan how I feel there are many gaps within the current legal system. The issue I have is with instructional medical directives. Instructional directives are not helpful to doctors because they are framed under conditions of certainty. For example, it is common to find a statement like the following in a patient’s directive:

“When I am in a persistent vegetative state, I don’t want to be kept alive on machines.”

But the problem with statements like these is that we as physicians don’t know when people are going to die. With the statement above, how does a doctor know if the vegetative state is persistent or not? When doctors need to decide whether to save the patient’s life, they don’t always have certainty about the outcome. Because they can’t predict with certainty when the patient will die, they cannot rely on the patient’s ‘when I’m dying…’ instructions.

Lawyers continuing to write instructions like this in their clients’ legal documents actually does them a disservice. It gives their clients (our patients!) a false sense of security.

A New Way of Planning

Instead of having people give instructions, we take a different approach. I explained to Jan how Plan Well focuses on preparing people for future periods of incapacitation. We help people systematically record their authentic Values and Informed treatment Preferences (VIPs). Their VIPs are then used in future situations of serious illness to help make medical decisions.

A serious illness is an illness that is serious enough that you could die, but you could also recover. There is uncertainty about the outcome. This is different from terminal illness where there is certainty of death. We created our tool for decision making in uncertain situations. This is why we’re different, and better for patients.

She seemed to agree with the new paradigm around planning for future serious illness instead of planning for certain death. She also seemed to appreciate our tools that 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.”

Incapacitation and Conflict

She explained that when a person becomes incapacitated but is still alive, this individual’s power of attorney now has 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, one side wants to spend more money to ensure their loved one gets the best care possible. However, the other side wants to spend less money, arguing what is the point given their incapacitated state. When they are unable to resolve their differences, that’s when the legal system gets involved.

At the core of the issue is: what would be the wishes and values of the incapacitated individual? What would they have wanted? Often times, the person has not articulated or documented these wishes. But if they had, they could have prevented so much conflict, uncertainty and pain.

Therefore, it is so important to document your wishes for how you want to live if you become incapacitated.

How to Plan for Incapacitation

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?
  • You may not be able to define all relevant conditions applicable to your future. However, the answer to the following question can give some guidance to your future attorney:  

You can record your answers to these questions as part of your planning documents, either in writing or in video. The benefits of a video is that how you want to be looked after when you are incapacitated is expressed your own voice and words.[i] However you go about it, it is essential that you reveal your wishes to your family. They will be responsible for implementing your wishes.

Ensuring that your wishes and plans are clearly documented will help reduce the likelihood of conflict. 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.

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

Take your planning to the next level

To further reinforce your wishes, you can create documentation that specifically addresses abuse and exploitation. For more specific information about this, see this document 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.

References

[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). https://doi.org/10.1007/s10991-019-09230-2

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To live well, age well, and die well, you need to Plan Well