By guest contributor Dr. Daren Heyland
With the COVID-19 pandemic having spread around the world at such an alarming rate, it caused a great deal of anxiety among people. Many have been left wondering what sort of impact this serious illness might have on them and their loved ones. To reduce this stress, some people were calling for end of life or Advance Care Plan(ACP).[i] [ii] Traditionally, these ACPs have focused on end-of-life or terminal care plans. Unfortunately, those plans are not necessarily suitable for the situation we are currently facing as a result of COVID-19. Planning for death under conditions of certainty (like when you have end-stage cancer) is not the same as planning for serious illnesses with uncertain outcomes (like COVID-19 pneumonia). Let me explain this all in more detail.
Awhile back, I had a conversation with an older woman, 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. I was sitting in her living room in a nicely appointed, well-kept house. 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 don’t 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 the end of her life, that when she was dying she didn’t want to have her dying experience prolonged with machines.
Many people, including lawyers and health care professionals, associate ACP with planning for future end of life or terminal care.[iii] [iv] [v] This movement stems from society’s understandable fear regarding how technology unleashed can keep people alive in health state’s worse than death. The right to self-determination is now entrenched in law in many states and provinces and people are encouraged to fill out advance directives or living wills that pre-specify the medical treatments they want or will not want when they are dying. Unfortunately, these kind of planning tools are not valid in Ontario and are not useful to us as clinicians either. Most of the care plans or instruction directives are framed around conditions of certainty, “if I am dying, I don’t want this or I do want this…” However, most of the clinical scenarios where we need to make preference-sensitive decisions regarding the use of life-sustaining treatments are situated early in the clinical course where the outcomes are uncertain. I remember a patient who was intubated with respiratory failure secondary to heart failure and transferred up to the 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 wouldn’t 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 kinds of ACP, AD and/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 have to be made. Rather than pre-specify medical decisions in advance, how do we better prepare people (and their substitute decision-makers) to make medical decisions in the future, when they are seriously ill?
Plan Well Guide fills this gap and helps doctors and lawyers to work together to help people prepare optimally for future serious illness. Plan Well Guide is a free online planning tool which helps people discover their authentic values and informed treatment preferences and provides resources that will help make medical treatment decisions in a reliable and transparent way. It has been shown in the context of a randomized trial to improve decisional quality and satisfaction with decision-making and reduce physician time spent on decision-making (because the patient is more prepared).[vi]
At Plan Well Guide, we would love to collaborate with lawyers and have them encourage their clients to name and prepare their substitute decision-maker and fill out the necessary forms to support that determination. But in their power of attorney of health care, please stop drafting instructional directives, specifying the nature of medical treatments that the patient wants or does not want. These instructions do not have any validity, are not supported by health law and have little clinical utility. Instead, the power of attorney for health care should be instructed to work with their family doctor to make health care decisions on behalf of the patient based on their current understanding of the person’s values and preferences. The output of the Plan Well Guide planning tool is a ‘Dear Doctor’ letter which summarizes the patient’s authentic values and informed treatment preferences. The combination of the ‘Dear Doctor’ letter plus the legal form that defines the legally appointed representative is what is needed to help people think and plan ahead, so they can get the medical care that is right for them. Given the current COVID-19 pandemic, people need to do their ASIPP, ASAP!
Daren Heyland MD
“To live well and to die well, you need to plan well.”
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[iii] Lin CP, Evans CJ, Koffman J, Armes J, Murtagh FEM, Harding R. The conceptual models and mechanisms of action that underpin advance care planning for cancer patients: A systematic review of randomised controlled trials. Palliat Med. 2019;33(1):5–23. doi:10.1177/0269216318809582
[vi] Heyland DK, Heyland R, Bailey A, and Howard M. A novel decision aid to help plan for serious illness: a multisite randomized trial. cmajo 8:E289-E296; published online April 28, 2020, doi:10.9778/cmajo.20190179