April 16th is National Advance Care planning day. It is a time to promote the idea of thinking ahead and planning head for your future medical care. It involved naming and capacitating your future substitute decision-maker because likely when you are seriously ill, doctors will have to engage your substitute decision-maker (usually a family member) to help us make decisions about your care. With the global pandemic continue around us, never before has there been a need to engage in this planning. As a critical care physician, I would like to share and experience of a family member called to step in and make life and death decisions for a loved one.
Joan and her husband were getting on in age. As part of their ‘preparing for the future’, they met with the lawyer and filled out the legal forms where the named each other to be their substitute decision-makers. They expressed in writing their end of life wishes, that “when they were diagnosed with a terminal illness, they would not want heroic measures.”
That was the extent of their preparations. They didn’t talk more about their wishes for medical treatments when seriously ill. Joan’s husband was much older than her and suffered from several chronic diseases. His health was poor, but they still maintained their independent function but there was significant stress in doing so.
One day, Joan’s husband developed a sudden pain in his belly. The pain was so severe, Joan called the ambulance and rushed him to hospital. In the ER, his vital signs were very unstable and ICU was consulted. When I arrived on the scene, Joan’s husband was in a critical condition. General surgery had been consulted and they ascertained that he had an ‘acute abdomen’ and need urgent surgery, but his chronic health conditions limited their enthusiasm for pursing that option. As we labored to get his pain under control, he further deteriorated. We need to escalate our care and put him on life-supports and prepare him for surgery.
I discussed the treatment options with Joan, who was very distressed. She was fixated on his prior wishes, that when he had a terminal illness, he would not heroic measures. I had to explain to her that his current condition was critical but with appropriate intervention, he may recover, but we couldn’t be sure. We need to make a treatment decision now under conditions of uncertainty, where we didn’t know the eventual outcome. What we knew for sure was that if we didn’t intervene, this illness would become fatal. Joan was extremely stressed and anxious about making this decision. They had never talked about making these kinds of decisions before and she felt unprepared or ill-informed to make these life and death decisions on her husband’s behalf.
Unfortunately, we did not have the luxury of time to deliberate on what might be the best situation here. Having never met the husband or Joan before, I had to infer from the little I knew of them what might be the best decision for Joan’s husband. Together, we decided to forgo life-sustaining treatments including surgery and focus on comfort measures only. As we provide symptom relief, Joan’s husband passed away hours later on the hospital ward.
The story doesn’t end there. Four of 5 months after his passing, I received a phone call at work.
“Dr. Heyland, this is Joan. Do you remember me? You cared for my husband a few months back.” After a minute, I did recall her and the poignant experience of having to make that time-pressured life and death decision.
After reconnecting, she asked, “Dr. Heyland, did we make the right decision?” I don’t remember much of the conversation after that. I was struck that for many months, she had been suffering from that fateful day where she was thrust into a role of ‘substitute decision-maker’ on behalf of her husband when she was so ill-prepared and that had such significant consequences.
One of the biggest myths in modern medicine is that we can accurately diagnose terminal illness. Consistent with that flawed paradigm, we promote the concept of advance care planning, where we get lay people to document their wishes for terminal care in legal or other forms, which are meant to have some validity or utility when they get sick. Unfortunately, as illustrated by this anecdote, these end-of-life plans, made under conditions of certainty (“When I am dying, this is what I want or don’t want”) make the experience of substitute decision-making WORSE![i]
In the moment, family members like Joan, experience the difficulty in knowing whether a medical condition is ‘terminal’ or not, they struggle to know when the end-of-life plans apply, and thus, experience tremendous stress, regret, helplessness, and guilt in fulfilling their role. Again, like what happened with Joan, many live with these negative effects for months if not years to come.
Shame. All this suffering could have been prevented by approaching this problem differently. I have been an advocate of advance serious illness planning, which is different from traditional forms of advance care planning. [ii],[iii] I’ve created this table (see below) to help both lay people and health care professional alike understand the difference between the 2 ideas. When you consider the current quality of serious illness decision-making and the amount of medical errors happening in the health care system today[iv] and the experience of substitute decision-makers making life and death decisions on behalf of their loved ones (as illustrated by Joan’s story),[i] surely we have to do something different to reduce human suffering.
I suggest this April 16, on National Advance Care planning day, you do your advance serious illness planning at www.planwellguide.com, a free, online advance serious illness planning tool.
Dr. Daren Heyland
Both traditional Advance Care Planning (ACP)* and Advance Serious Illness Planning (ASIP) are done in advance, can be done online or on paper, and involve naming. and capacitating a substitute decision-maker. However, there are many notable differences between ACP and ASIP which we have clearly highlighted in the table below:
|Advance Care Planning||Advance Serious Illness Planning|
|– Focus is on ‘the conversation;||– Focus is on planning and preparation|
|– Geared towards older persons but acknowledged to be across the continuum of life.||– Applicable to all adults|
|– In relation to end of life care||– In relation to future serious illness|
– Done under conditions of certainty, “When I am dying, this is what I want or don’t want…”
– Done under conditions of uncertainty, where there is a probability of death but ALSO a probability of recovery.
|– Framed as a ‘decision’ made in advance (advance directives)|
– Framed as preparing people for future serious illness decision-making (not making decisions in advance)
– Done without input from health care professionals or particularly doctors
– Done in advance but designed to enhance collaboration with health care team and the treating doctors
– Does not typically use values clarification tools nor decision aids- treats patients as autonomous and informed consumers of health care and that you only have to ask them what their wishes are and they reflect truths that should be followed.
– Plan Well Guide uses best-in-class constraining values clarification tools and first-in-class levels of care decisions aids to help people determine their authentic values and informed treatment preferences.
– Not useful in serious illness decision-making but death is not a certainty at the point where doctors need to decide about the application of life-sustaining treatments (such as ICU admission and mechanical ventilation)
– Useful to inform future serious illness treatments and may be useful in end-of-life scenarios.
The definition of Serious Illness is the kind of medical condition that requires patients to be in the hospital, like a bad COVID-19 pneumonia, a serious motor vehicle accident, or a major heart attack, or stroke. Patients are so sick that they may die, however there is also a chance that they may recover. At the point where patients experience a serious illness, doctors will need to know whether to apply life-sustaining treatments, and they may not know for sure if the patient is dying, so end of life plans don’t apply. The focus of Plan Well Guide’s is to educate people on how serious illness decisions are made and the importance of their values and preferences in making those decisions. The goal of Plan Well Guide is to help people prepare a plan that clearly communicates their authentic values.
*ACP means a lot of different things to a lot of people. One of the problems is that it combines all sorts of conversations/planning into this one umbrella term. In my judgement, i am framing ‘traditional’ ACP as how it is most perceived by lay people and some ACP facilitators.
[i] Su Y, Yuki M, Hirayama K. The experiences and perspectives of family surrogate decision-makers: A systematic review of qualitative studies. Patient Education and Counseling, Volume 103, Issue 6, 2020, Pages 1070-1081, https://doi.org/10.1016/j.pec.2019.12.011.
[ii] Heyland DK. Advance Care Planning (ACP) vs. Advance Serious Illness Preparations and Planning (ASIPP). Healthcare (Basel). 2020 Jul 18;8(3):218. doi: 10.3390/healthcare8030218. PubMed PMID: 32708449.
[iii] Heyland DK, Heyland R, Bailey A, Howard M. A novel decision aid to help plan for serious illness: a multisite randomized trial. CMAJ Open. 2020 Apr 28;8(2):E289-E296. doi: 10.9778/cmajo.20190179. PubMed PMID: 32345707.
[iv] Heyland DK, Ilan R, Jiang X, You JJ, Dodek P. The prevalence of medical error related to end-of-life communication in Canadian hospitals: results of a multicentre observational study. BMJ Qual Saf. 2016 Sep;25(9):671-9. PubMed PMID: 26554026.