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Why we need to plan for serious illness, not end-of-life

patient with serious illness in hospital bed

We all need to start doing advance serious illness planning (not traditional advance care planning) right now.

Like many Canadians, these past 20 odd months have forced me to reflect more on my health, the health of my family, and the health of the health care system. I see how the pandemic brought tremendous change to many areas of our lives, from exercising, where we dine and shop to how and when we can visit loved ones. Gratefully, as the pandemic seems to abate in most of Canada, life can return to somewhat similar to pre-pandemic times. However, we must not forget the importance of thinking and planning ahead for the medical care that might be right for us if we were to become seriously ill.

April 16, each year this date marks National Advance Care Planning Day in Canada. “Advance care planning” or “ACP” has traditionally been referenced in the media or public health campaigns as preparing for the ‘end of life’. However, a new paradigm is needed to truly help people prepare for serious illness, such as a severe COVID infection.

This is why I am trying to help simplify the planning process as it relates to serious illness by reiterating the sentiments from many reputable scientists and researchers that all of us should be focusing our time right now on preparing advance serious illness plans instead of advance care plans.  In essence, I am preparing people for future medical decision-making when they are seriously ill rather than having them make medical decisions today at the kitchen table or at the lawyer’s office. We should no longer be asked to make treatment decisions today about hypothetical scenarios in the future like traditional advance care planning or legal planning does.

I want to educate people on what is serious illness, how serious illness decisions are made and the importance of their values and preferences in making those decisions. I believe in doing this advanced serious illness planning because it will help people avoid the stress, regret, helplessness, anxiety, and confusion often experienced when people confront serious illness and they are more likely to get the medical care that is right for them when seriously ill.  

Representative making decisions for seriously ill patient

I remember talking to an older lady about her advance medical care plans. Immediately, when we started the conversation about her wishes, she emphatically stated, “I would never want to be on machines” as she shook her head with a firm look of determination on her face. She was a spry, fit older person. It seemed odd to me that she should categorically refuse such potentially life-sustaining treatments. I asked, “So, what if, when you were sick there was a probability of recovery in which we could get you better and back to your baseline function, would it be worth it to you to go on machines temporarily?” The previous look of determination vanished and gave way to a wide-eyed, almost panicked look as she said, “I don’t know—what do you think?” I went on to explain the nature of serious illness, that we do not always know if patients will recover or die, and if they recover, what kind of shape the person will be in. She later confessed that she thought we were talking about her end of life, that when she was certainly dying, she did not want to have her dying experience prolonged with machines. I totally understand this sentiment. But one of the greatest myths perpetuated by the ACP movement is that we can accurately diagnose ‘dying.’ Unfortunately, this is not the case for most Canadians who get sick and may require ICU services. 

Let me illustrate this point by sharing another interaction I had with a patient who was intubated with respiratory failure secondary to heart failure and transferred up to my ICU. When I met with the family, they produced a living will that said he did not want any “heroics”, and the family was upset that his wishes were not honored. I set aside the written document to explore what they thought he meant when he wrote the document. Once again, they confirmed that he was trying to say that when he was dying or in some persistent terrible health state, such as coma, that he would not want life-sustaining machines. I asked, “When he made this living will, do you think he was thinking of a situation like this, where with just a few hours of positive pressure ventilation and diuresis, we have a good chance of getting him off the machines quickly and fully recovered? They unanimously agreed he was likely not thinking of his current clinical context when he filled out his living will.

As a critical care doctor, I would argue in the context of life and death decision-making, we cannot have uncertainty, misunderstandings, or ambiguity about the meaning of people’s wishes. So, what then is the value of these ‘end of life’ wishes (ACP, advance directives or living wills) in the context of serious illness? They may be helpful in planning your death under conditions of certainty, but they are not helpful in the context of serious illness where the outcome is uncertain when decisions must be made.

I created a free online tool, the Plan Well Guide which is designed specifically to help people with their advance serious illness planning and ensure they and the substitute decision-makers are prepared in the planning process, unlike what is currently being done with traditional advance care planning. I have seen how there are times when people can be too sick to make decisions for themselves when they become seriously ill, so that responsibility of making life and death decisions falls to their families.

Many people go to lawyers to get the legal forms to name their substitute decision-maker, but lawyers don’t prepare the client or their named substitute for future medical decision-maker. A primary focus of Plan Well Guide is to educate people and their substitute decision-maker on how serious illness decisions are made and the importance of their values and preferences in making those decisions. It helps people prepare a plan that clearly communicates their authentic values and informed treatment preferences that they can share them with their doctor, loved ones, and substitute decision-maker, so that when they are seriously ill, they get the medical care that is right for them with the least stress on all stakeholders.

Content taken from an oped article written by Dr. Daren Heyland.

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