Five years ago, I decided to shake up my career, and joined Alex and Pascal at the helm of a little Canadian fintech startup making one very bold statement: We must take end-of-life planning seriously.
We have always been completely unserious, even chaotic in the management of the final phase of life. You and I as individuals, our governments, our financial institutions…
With this historic neglect, we have been in effect creating post-facto burdens for ourselves as seniors, and later for our surviving children, spouses, siblings and other loved ones during some of the most difficult moments of their lives.
As I reflect this summer on lessons learned along the journey thus far, one important bit of wisdom came from emergency medicine and critical care expert Dr. Daren Heyland.
Quoting the country singer Tim McGraw, Dr. Heyland suggests very bluntly that we “live like we’re dying”. And administratively plan for it.
After years of seeing the consequences of incomplete estate planning first hand, Dr. Heyland founded the Plan Well Guide to improve communication tools around serious illness. During COVID, after struggling to change the healthcare system from within, he went public with a pledge to help “capacitate you,” so people could better understand ICU care, the decisions that are made, and how to avoid serious pain and discomfort.
Listen to Dr. Daren Heyland on The End Game podcast.
Avoiding “Pull the Plug” Dilemmas
The phrase “pull the plug” often evokes scenes of heartbreaking, distressing and seemingly rare healthcare scenarios involving critical end-of-life decisions that have to be made by family members.
For others, the phrase may bring cold comfort: Don’t worry about my estate plan. If anything happens, just tell them to pull the plug.
Estate planning is not just for the dying.
Parts of an estate plan are meant to serve someone who is alive but incapacitated; unable to express their preferences, unable to explain how or where they want to be cared for, and unable to guide the people suddenly asked to speak for them.
Pull the plug is not a plan. For seasoned physicians like Dr. Heyland, who in fact teaches aspiring emergency physicians at Queen’s University, these scenarios are common and much more complex than anyone expects.
In an emergency, families may be pushed toward decisions framed as a yes/no choice: continue treatment or stop. But Dr. Heyland argues the better question is: what would the patient have wanted, given the trade-offs?
He notes that without preparation, families and clinicians “struggle to discern… the voice of the patient,” especially when multiple relatives must agree or disagree under stress.
Planning helps here in a couple of ways: it identifies who should speak, and it equips that person with the patient’s values and preferences. Without that, clinicians may rely on vague cues (she’s a fighter!) without knowing whether the family understands what “fighting” may actually mean in a medical context.
A person may want every possible intervention. Another may prioritize comfort and dignity if recovery would mean a life they would find unacceptable. Someone else may accept significant pain or dependency if it means more time with children or grandchildren.
Those preferences may also change over time, which is why we consider an estate plan that has gone without updates for over three years to be out-of-date.
The view one has at 30 may not be the view one has at 50 or 70. That is why this planning needs to be refreshed, and why the conversation matters as much as the document; we recently launched The End Game podcast series as well on this premise.
Elements of an Advance Serious Illness Plan
Unfortunately, effective incapacity planning cannot be accomplished with one signed form or a will template. It is a structured way to document values and preferences.
A practical plan should include:
● Decision-maker(s): Who will decide medical care and personal care if capacity is lost.
● Quality-of-life preferences: What outcomes feel acceptable, and what outcomes would be “worse than death,” in the patient’s view.
● Values under uncertainty: Preferences that hold even when no one can predict the outcome—because “there’s always this risk…”
● A “dear doctor” letter (optional): A plain-language summary of the person’s priorities: what matters most, what they fear, and what they would trade to extend life or preserve quality of life.
These questions do not require medical knowledge, just some foresight, effort and honesty.
Face Death Like an Adult
If you could no longer recognize the people you love, would you still want every possible medical intervention? If you could live longer but needed full-time care, would that be acceptable? What would make a life feel meaningful enough to keep fighting for?
These are tough questions that aren’t especially pleasant to contemplate but they should be considered part of our basic duties as adults, like doing your taxes.
We’re going to attempt, through our writing and podcasting, to push people to tackle end-of-life issues head on. Storytelling can be a powerful device to further these reflections, especially when the stories are true.
Early in his career, Dr. Heyland recalled caring for a man who went to work one day, suffered a catastrophic brain aneurysm and ended up comatose in the ICU, on breathing machines, with an extremely poor prognosis.
His wife was devastated, not only by the prognosis but by the fact that they had argued that morning. She had said hurtful things as he left for work. And she would never have the chance to say she was sorry, or that she did not mean it, or that she loved him.
The lessons Dr. Heyland drew were both practical and philosophical: relationships matter.
Yes, it is about instructions, wishes, documents and decision-makers. But it is also about goodbyes, unresolved conversations and how we treat the people around us before a crisis removes the chance to say what needs to be said.
Incapacity planning is not pessimism. It is personal risk management. It protects families from medical miscommunication, conflict and unnecessary heartache. It also protects the person at the centre of the plan by making sure preferences are captured, and that the final phase of life is lived in a way they would have wanted.
The lesson seems obvious but it is worth saying plainly: incapacity planning, estate planning, have to be done before incapacity. Afterwards, it is just too late.