I don’t like thinking about my inevitable death, much less spending time planning for it. But if I am not careful, when the time comes, I will receive burdensome medical care that I would have hoped to avoid: last ditch surgery, a frantic transfer to the ICU, maybe a feeding tube that only prolongs my suffering.
How do I avoid that fate? How should I plan for the end of my life?
Many experts say I should document my preferences clearly and unambiguously in my medical records so that, in the case of mental incapacity, my doctors can look at what I say and honor those preferences. According to the AARP, leaving ahead detailed instructions about your end-of-life preferences means “that you remain the captain of your own ship.”
In a living will, for example, you can indicate whether, and under what circumstances, you would want to be given CPR, put on a ventilator, or given artificial nutrition and hydration.
I respect these experts. And I do not begrudge anyone who has filled out such a document. But I worry that this approach won’t work and could even backfire. That is why I prefer a different approach, which I will describe shortly. But first, I need to explain why these kind of detailed advanced directives could backfire.
First, a living will asks you to imagine what you want in situations you have typically never experienced, and without the rich contextual detail that will surround your life should you become seriously ill and incapacitated. Do you really know when or whether you would want a ventilator? Do you know whether you would want admission to an ICU is you were demented? Would it matter whether you were demented and happy, versus demented and unhappy?
Second, a detailed living will could tie the hands of your family and clinicians, even when they believe in alternative approach is in your best interests. Returning to an example from the previous paragraph, imagine you say you never want to be put on a ventilator. Then you have a sudden and reversible respiratory event. Everyone thinks a short trial of ventilation is likely help you return to your baseline health. Do you want them thinking twice about this intervention because of what you wrote down in a living will?
In fact, a study out of Johns Hopkins University randomized clinical practices so that, in some practices, patients met with a facilitator trained in advanced care planning. The idea was that patients in those practices would have a chance to set limits to their end-of-life care, and thereby avoid burdensome treatments. As expected, patients in those practices were significantly more likely to document their end-of-life preferences in the medical chart.
Unfortunately, patients in those practices were also more likely to receive potentially burdensome care near the end of their lives.
I propose an alternative. Make sure your healthcare team knows who you want making decisions for you if you are not able to, and make sure that surrogate decision-making preference is documented in your medical chart. Pick someone you trust. Feel free to talk with them about your big picture preferences but please – please – let them know you trust their judgment. Don’t ask them to read your mind about what you would want, if you’re unable to voice your preferences at a later date. Just asked them to decide what they think is best, given whatever unpredictable circumstances you someday encounter.
My wife knows that I am not an avoid-death-at-all-costs person. She knows I would not find much value in living life in a permanent coma. But if she wants to wait a few more months to see if the coma is truly permanent, I don’t want her to fear that this prolongation of my life would go against my wishes. Because my wishes are for her to make whatever decision she –in consultation with my doctor and kids – think is best for me and for the people who will survive me.
You might not want to think about the serious illnesses you may face at the end of your life. You probably don’t want to think about CPR and ventilators and feeding tubes.
But you must… must… take the time to designate a person to make decisions for you if you become incapacitated. And let that person know that you trust them to do what is best.
