Opinion – Getting the medical care that is right for you during serious illness: A perspective from a critical care doctor

Editorial note: The following is a submitted Op/Ed article from Dr. Daren Heyland. The views and opinions expressed do not necessarily reflect those of the Kingstonist.

COVID-19 is in fact a serious illness. We know that cconfirmed cases right now, in our area for KFL&A are sitting around 59 which has remained fairly consistent for the past little while. We want to see this number get smaller and people are working hard to help by continuing to practice social distancing, however, I imagine most people are still nervous or anxious about what could happen.

While it is true that most people who ‘test positive’ are not that sick or can be managed symptomatically at home, based on the early experience in China and Italy, approximately 20 per cent of people who contract the virus will have a severe form of the disease and 5 to 15 per cent will need admission to an Intensive Care unit (ICU) and require support from breathing machines. Unfortunately, 1.5 to 7.0 per cent of all patients with COVID-19 succumb to their disease and more than 50 per cent of those requiring ICU admission will in fact die. A disproportionate number of these deaths are in older patients. The average age of people who died in Italy was 78. Currently, we don’t know the long-term health outcomes of survivors of COVID-19 pneumonia, but it seems likely that, as with other diseases that cause prolonged critical illness, these survivors will experience significant reductions in their quality of life. For many older patients or patients living with chronic or life-limiting illness who are just barely maintaining their independence, further reductions in their function and quality of life would not be acceptable to them. “I would rather die than go to a nursing home” is a frequent expression I have heard from such people. So, while admission to ICU and support from breathing machines may be life-saving for some; for others, it only serves to prolong their dying experience.

In order to get the medical care that is right for you, you need to learn and understand how medical decisions are made when people are seriously ill, and what you have to say and how best to work with the doctors so you get the medical care that is right for you. Any advance care planning that you may have done, which has likely been focused on ‘end of life’ care, will not be helpful in the current situation. Planning for end of life care, when you know for certain you are dying, is not the same as planning for serious illness. COVID-19 is an example of a serious illness where there is a probability of death, but as well as a probability of survival.

Unfortunately, doctors will have to make treatment decisions about whether you should go to an ICU or go on breathing machines before they know your outcome (whether you are going to live or not). For more information on the difference between serious illness and terminal illness, check out this online tool at planwellguide.com which provides information around important issues such serious illness decision making and the different types of care.

If you were to get sick with COVID-19, to ensure you get the care that is right for you, you should be able to verbalize your answers to the following questions from Plan Well Guide:

• Are you the kind of person who wants medical treatments to focus on the quality of your remaining days or to focus on prolonging your life, for as long as possible?

OR

• Are you the kind of person who prefers a natural death or are you willing to accept the use of machines, such as breathing machines, to prolong your life, for as long as possible?

AND

• Are you willing to put up with the risks and possible outcomes of critical care treatments? 

Doctors use answers to these questions to help propose medical treatments that could be offered during serious illness

Let me illustrate how this works. My 91-year-old father-in-law buried his wife of more than 60 years last year and now lives alone in a senior’s residence. While he enjoys reasonably good health, he is not interested in medical treatments that prolong life (would rather focus on quality) and would prefer a natural death without being attached to machines. Consequently, he is interested in comfort measures only and is not willing accept the risks and possible outcomes of ICU care. If he were to contract COVID-19, he would not want to go to an ICU and be on breathing machines, even if his breathing were to get labored and his oxygen levels low. He would want to request ‘comfort measures’ only and treatments would be offered just to deal with his symptoms. Unfortunately, doctors do not always respect patients’ wishes for limitations of care, so it will be important for him, if he is able, or my wife and I if we are called upon, to make decisions for him, to advocate for him and see that he gets the medical care that is consistent with his wishes.

In contrast, my own 84-year-old father is the primary care giver to my mother, who has advanced dementia. If he were to contract COVID-19 and succumb to this serious illness, there would be a severe strain on our family, as my mother may then require more advanced care, such as having to be placed in a long-term care facility. As a result of this, my father wants to stay well and stay alive to fulfill this important caregiver role. He does value treatments that prolong his life and is ok with machines, but doesn’t want a prolonged ICU stay that will result in him being alive, but weak and disabled. Consequently, he can express a preference for a ‘short-term trial of ICU excluding CPR.’ However, in my father’s case, there may be such shortages of ICU beds or breathing machines that it may not be offered to him, because of his age and clinical circumstances. This is the harsh reality of this pandemic, that there are insufficient resources to care for all those who need them.

I strongly recommend that you ‘prepare’ for serious illness and go through the serious illness planning program on www.planwellguide.com. You will have greater peace of mind knowing that you have your serious illness plan in place.

— Dr. Daren Heyland

Daren Heyland is a critical care physician and professor of medicine at Queen’s University and founder of the online tool, Plan Well Guide.

For more information on the Plan Well Guide, which is offered free of charge and does not share any of the information gathered, check out the video below from Dr. Heyland.