Chapter 18

Have you done your advance care planning? Did you ‘erroneously’ sign up for comfort measure only?

March 11, 2021

It is likely you have heard the term ‘comfort measures only’ in the context of medical care and planning. Comfort care can be provided in a hospital, a long-term care home, a hospice, or at home and care focuses on managing symptoms. Comfort care sometimes called a ‘palliative approach’; however, it may or may not involve services from palliative care clinicians. Have you expressed a preference for comfort measures only? Are you sure you have the right preference?

What You Should Know About 'Comfort Measures Only'

In my clinical experience, one of the common mistakes people make is that they sign up for ‘comfort measures only’ because they think they are signing up for a care package when they are in a more palliative state and dying. As we try and stress several times in our Plan Well Guide materials, we are not planning your death; what we are planning for is serious illness.

 We encourage you to refer to the image below, which helps to further explain what it means when you hear the term serious illness decision making.

The downside of ‘comfort measures only’ is that potentially curative treatments may be withheld as all treatments are focused on treating symptoms, not the underlying disease. When I was conducting research amongst community members regarding their views about advance medical care planning and the use of life-sustaining technologies, I had an experience that illustrated the ‘error’ I am trying to illustrate. Here are the details about the experience I am referring to:

"I remember talking to an older lady in her home 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 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 her end of life, that when she was dying she didn’t want to have her dying experience prolonged with machines."

What We Learned About 'Comfort Measures Only' and Plan Well Guide Users

Out of the first 1,000 users on Plan Well Guide, approximately 15% selected ‘comfort measures only’ as their final medical preference. I must admit I was quite shocked to see that almost 25% of these were for people between the ages 31 to 65 years old. Admittedly, that is a broad age range, but I would be worried that many younger individuals may be making a mistake with selecting ‘comfort measures only’ as their final preferences. As a result, I reached out to all these users to make sure they didn’t in fact make a mistake. While some people  responded and were grateful for my further explanation that led them to revisit their preferences. There were others who reaffirmed that, because of their life circumstances and experiences, these indeed were their correct views.

To help further illustrate my point, I wanted to share a quote from one of the respondents:

Hi Daren, Thank you for your letter. I have worked in the health care setting for a number of years and have made those decisions based on what I have seen. I am a Respiratory Therapist and the thought of being on a ventilator is not something I wish to do...ever. Under no circumstances do I want to be a burden to my family. I have underlying medical issues and if I did survive those scenarios, I believe I would definitely not any have quality of life and I would be a burden. I do not believe life is worth living if there is little or no quality. As both my parents lived well into their 90s the thought of living that long with poor quality of life gives me nightmares. Thanks for following up with me, I appreciate it.

For anyone who has signed up for ‘comfort measures only’, to help differentiate serious illness planning from end-of-life planning, here is an all to realistic scenario to consider:

Suppose you were to contract a severe COVID-19 infection and it progressed so much that you needed to go on a breathing machine, or you would die. The ICU doctor said to you (or your substitute decision-maker) that you have a 50% probability of dying but that also means you have a 50% probability of recovering from this illness. Based on your current health, are you saying you want to forgo chances of curative treatments and just be offered comfort measures? This means, with certainty, you will die. Is that what you really want? What if it were a 90% probability of recovery and a 10% chance of death? You still want to forgo curative measures?

Learn How Plan Well Guide Can Help You!

We want to help ensure those who are using Plan Well Guide can have more confidence that they are picking the right medical preference for themselves. As a result, we have created an additional visual to help highlight the ‘profile’ of typical people that chose the various treatment options available to treat serious illnesses.

Please refer to tables A-F in the image included below.

Does this visual help you make or confirm your preferences?

Please note that this visual is not currently on the website but we will be updating the website in coming months and will include it in our updates. It you have any feedback, please do let me know, via email, I would be grateful to hear from you. If you have any other feedback on the visual or anything else around how we can better explain to you what serious illness planning is all about, let me know as I really do want to help you get the medical treatment that is right for YOU!

– Dr. Daren Heyland