Chapter 23: What’s wrong with Advance Care Planning?

Recently, a palliative care colleague wrote an article that was entitled, “What’s wrong with advance care planning (ACP)?”[i] in one of the world’s most read medical journals (The Journal of American Medical Association). They note that ACP is grounded in the desire to improve the quality of one’s end of life experience by planning for one’s death in advance.

They reviewed the past 25 years of medical research but failed to show any substantial benefit to advance care planning! Moreover, they suggest that by continuing with efforts to promote traditional ACP, we may not only be wasting resources, but we may be doing harm!

That harm is not only experienced by people who get the wrong medical care when seriously ill, but also substitute decision-makers (SDMs). SDMs must pivot away from the instructions in their loved one’s advance care plans, in the heat of the moment, to something different and more applicable to the current medical context.

The authors conclude that, “If ACP is not essential to high-value end-of-life care, then what is? One approach is to encourage appointment of a trusted surrogate decision maker (health care proxy) in advance and to focus research and clinical efforts on improving current shared decision making between proxies and clinicians.”

As the creator of the concept of ‘Advance Serious Illness Planning (ASIP)”, I couldn’t agree more! ASIP does not have you make medical decisions in advance but rather prepares you for future shared decision-making with clinicians when you are seriously ill. Furthermore, ASIP is framed about serious illness, not end of life care. To highlight the differences between ASIP and traditional ACP, I’ve recreated a table I published in an earlier blog:

Table: What is the difference between Traditional Advance Care Planning and Advance Serious Illness Planning?

Advance Care PlanningAdvance 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 careIn 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 doctorsDone 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.

Definition of Serious Illness

Serious illness is the kind of medical condition that requires patients to be in the hospital. For example, a serious COVID-19 pneumonia, a severe motor vehicle accident, a major heart attack, or a stroke. Patients are so sick that they may die, however there is also a chance that they may recover

This is important to know because at the point where patients experience a serious illness, doctors will need to know whether to apply life-sustaining treatments. However, they may not know for sure if the patient is dying, so end of life plans don’t apply

Therefore, the focus of the Plan Well Guide is to educate people on:

  • how serious illness decisions are made,
  • what kind of life sustaining treatments might be used, and
  • how important people’s values and preferences are in making those decisions. 

The goal of the Plan Well Guide is to help people (and their substitute decision-makers) prepare a plan that clearly communicates their authentic values and informed treatment preferences for future use in shared decision-making discussions with clinicians when they are seriously ill. 

To optimally prepare for serious illness, sign up or login now to make your plan!

I’d encourage you to do your ASIP, ASAP!

Dr. Daren Heyland advises his patience to plan for serious illness instead of end-of-life.

[i] Morrison RS, Meier DE, Arnold RM. What’s Wrong With Advance Care Planning? JAMA. Published online October 08, 2021. doi:10.1001/jama.2021.16430