Advance care planning is best way to show compassion in these strange times
Family members are wrong about end-of-life care preferences of loved ones roughly one-third of time
I should have told my family how I wanted to die years ago.
My brother, father, and I are all doctors. We have seen deaths in our professional lives that are calm and chaotic, dignified and painful, beautiful and terrifying. We have seen how planning for end of life medical care can help.
However, that is not the primary reason why I should have told them.
My parents were married on Valentine's Day, 1985. Ten days later, on a snowy morning, my mother had a catastrophic car accident. The collision killed the driver of the other vehicle. My mother was pried out of the wreckage and rushed to a trauma centre.
With resuscitation and then rehabilitation, she escaped with a permanent brain injury and a paralyzed right eye. Three months later, she was discharged home to finish relearning how to walk and talk.
Years later, she had a "do-not-resuscitate" order tattooed on her chest that left me wondering if she wished things had gone differently that day. But even after finishing medical school, even after guiding my training towards care of the dying, I had yet to directly ask her what kind of medical care she wanted at the end of life.
I thought an appreciation for mortality lay at the core of our family system. But it took a global pandemic to show me I was too afraid to ask my mother and the rest of my family that all-important question.
So instead, I asked by starting with a confessional: If COVID-19 makes me sick and my heart stops, please, do nothing.
"It's a full code for me," came the quick reply from my brother, which meant he'd want all possible medical action taken to try restarting his heart or breathing.
His answer surprised me. I immediately wondered what our friends and family would say about the differences between us. Is my brother braver than I am? He wants chest compressions, a breathing tube down his throat, and pursuit of recovery despite the inevitable suffering.
- Guessing what you want vs. knowing your real wishes: New urgency for advance care planning in pandemic
On the other hand, my father replied that he wants the same as I do. No one should push on his chest if his heart stops, but he wants a brief shot at intubation and then a gentle retreat if the effort appears futile.
As my wife and I followed the conversation, she turned to me: "I want CPR if my heart stops. And," she added with a cheeky neuroscientist's grin, "if I'm in a vegetative state after CPR, you have to volunteer my brain for research on disorders of consciousness."
Lastly, and somehow even more surprisingly, my mother revealed she would want to be put on a ventilator if her doctors thought it would work. In short, if her lungs are sick but the rest of her body is in good shape … she wants to be resuscitated.
Teasingly, my brother — an emergency room physician — responded, "and that's why I can't trust a do-not-resuscitate tattoo."
Without clearly documented plans, research indicates family members are wrong about the preferences of their loved ones approximately one-third of the time.
Just as I would have been.
Families get it wrong because they are forced to create a story out of little bits and pieces. Is my brother any braver than I am? Are you a fighter, a realist, a pacifist, a believer, a tough cookie, a brave one, or a do-it-all kind of person?
These are the kinds of snippets your loved ones will bring before your doctors. Doctors, in turn, will turn those snippets into medical decisions. Would "a fighter" want bone-cracking chest compressions if they are certain to fail? Might "a believer" want a machine to circulate their blood outside their body? Maybe "a pacifist" wants to wake up fighting to yank out their intubation tube?
Weaving a more complex and specific story about end of life wishes takes time and hard work. Physicians call that process of discussing medical care for the end of life "advance care planning."
Sadly, palliative care research suggests that fewer than 10 per cent of people with serious life-limiting illnesses such as chronic obstructive pulmonary disease (COPD) or congestive heart failure (CHF) have such conversations before it is too late.
Planning for death in advance leads to less trauma for the dying and less stress for those who love them.- Dr. Tavis Apramian
I realize from personal experience that finding clarity with your loved ones is hard. But these are crucial opportunities missed, because planning for death in advance leads to less trauma for the dying and less stress for those who love them.
If you're unsure how to talk about the end of life with your family, first try writing in a printed toolkit to describe what you want doctors to do if you become profoundly sick. Consider, especially, what you want them to do if your heart stops, if you're no longer able to breathe on your own, if COVID-19 infection leads to another disease like bacterial pneumonia, or if infection makes a disease you already have, such as heart failure, suddenly worse.
Knowing and understanding your options sometimes requires expertise. As does deciding in advance whether going to hospital at all if you are very sick makes sense for you, given your health status. So it may be helpful to speak with your doctor. Family doctors across the country have rapidly made telehealth appointments available, and advance care planning is a perfect use of this new resource.
Most importantly, discuss your thoughts and written preferences with your family.
If you are in the hospital and cannot speak, your family will be asked to make decisions for you. In the time of COVID-19, they may even have to make those decisions by phone to keep themselves safe.
In these strange times, you can show your love and compassion for them by being prepared.