Compassionate, informed advice about healthcare decision making

Archive for September, 2020

Living Wills and Advance Care Planning are Wrong. What?

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“Living wills and advance care planning are wrong.” What?

Yeah. I thought that, too. Who could be against living wills? How could planning ahead for possible future medical decisions be wrong? These doubts about the value of living wills came from the GeriPal podcast, “Advance Care Planning is Wrong: Podcast with Sean Morrison.”

Part of Morrison’s beef with these well-established practices for end-of-life care is the amount of research dollars continuing to be poured into “improving” them. Dr. Morrison and his hosts on the podcast are practicing physicians who also conduct research into how to improve medical care at the end of life. He would prefer that some of those limited research funds be channeled into improving other aspects of the end-of-life medical experience.

A healthcare proxy is a good thing.

He does say naming a “healthcare proxy” (a person you designate to speak for you if you can’t speak for yourself) is a good thing. But even that is often fraught with difficulties, like people never talking to their proxy about what their wishes are for things like life-prolonging procedures. Or, worse yet, not even telling the person they are named in their documents.

What could be wrong with a living will, you ask? Living wills are often prepared years before they are needed to help guide a medical treatment decision. We are not the same person we were twenty years ago when we wrote down our wishes. We may have changed our views.

I once had a nursing home patient who had a feeding tube. His eyes could track you around the room, but he could not talk. He soon became nonresponsive and his body began to swell and retain fluids. His wife said to me, in passing, “I guess it is time to get out his living will.” YES, please.

When he was healthy, he always told his wife, “If I am dying, I don’t want anything artificial keeping me alive.” Yet when he was faced with the possibility of dying, he said “yes” to the feeding tube. There is nothing wrong with his decision. If you have the capacity, you have every right to change your mind.

Update your family in light of your current values

The doctors on the podcast found that a decision made years earlier might be different when confronted with a specific medical situation today. What they found more helpful in the medical record is a note about what the patient expressed in conversation with their physician. What was the patient’s motivation for saying, “I don’t want life-prolonging procedures?” Things like “I value quality of life over quantity” or “I just want to see my daughter married in June.” What these docs are looking for is what values their patients have.

My takeaway from the podcast: Have conversations with my family revisiting my wishes about the end of my life. Update them in light of my current values and my current medical prognosis. COVID-19 is a perfect example of why a living will prepared years before might not help. I have changed my instructions to my wife twice in the last several months based on new research regarding the progression of the disease.

So, you might have to ruin another Thanksgiving dinner. I can hear your family, “Oh, Mom. Do we have to talk about that again this year?” Soldier on. Keep updating your feelings and wishes.

Never Let a Good Plague Go to Waste

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“Come to terms with death. Thereafter, anything is possible.” —Albert Camus

First, I did. Then, I didn’t. Now I am back thinking about dying. Blame it on COVID…and my men’s group.

In a bygone era — say February or March — the word was people like me, 72 with asthma, were dying in greater numbers than others. Yet, some were going on ventilators and surviving. I told my wife at the time, “If I get COVID, try me on a ventilator for a while.” Then I updated my end-of-life paperwork and wrote a letter to my family about the disposition of my journals. Life got back to normal.… or what now passes for normal.

The news and I have shifted. Though you still hear stories of old people getting off vents and surviving, many do not. Some get off and face years of disability. There actually is some good news in the news, too. Docs are finding less aggressive ways to treat respiratory failure with some success. My new instructions — “No CPR and no vent for me.”

So, I am back to thinking about dying.

It really could happen in short order if I get COVID. And the men’s group? I have been in this group for 28 years. We meet every Thursday at 6AM Eastern time. We have decided to let each guy take a week and retell his life story. Revisiting my story has encouraged me to think like a hospice patient.

I’m going big this time thinking about dying — I’m in life review. Where have I been? What has been the meaning of my life? What is the purpose of human life? What are my regrets? I ask myself the question I have posed as a hospice chaplain to many dying souls: “If you were to die today is there anything that would be left undone?”

In 1585, Michel de Montaigne took his family and fled Bordeaux, France, where he was mayor, to avoid the bubonic plague. (How many mayors around the world today would like a vacation in the country right now?) His term in office was about to end and he had one last official duty in town, attending the transition ceremony. A recent piece in the New York Times continued, “He rode his horse to the city’s edge and wrote to the municipal council to ask whether his life was worth a transition ceremony. He did not seem to receive a reply and returned to his chateau. By the time the plague subsided, more than 14,000 people — about a third of the city’s population — had died horrible deaths. As for the former mayor, he returned to a far more pressing task: the writing of essays.”

He is now regarded as the originator of the modern form of literature we call “the essay.” Like any philosopher worth his salt, Montaigne contemplated death. Early on in my work with the dying, I kept finding him quoted in the literature on death and dying. He titled one piece, “To philosophize it to learn how to die.” Here’s an excerpt:

Knowing how to die gives us freedom

“To begin depriving death of its greatest advantage over us, let us adopt a way clean contrary to that common one; let us deprive death of its strangeness; let us frequent it, let us get used to it; let us have nothing more often in mind than death. At every instant let us evoke it in our imagination under all its aspects.… To practice death is to practice freedom. A man who has learned how to die has unlearned how to be a slave. Knowing how to die gives us freedom from subjection and constraint. Life has no evil for him who has thoroughly understood that loss of life is not an evil.” Michel de Montaigne, c. 1533-1595

Even before the plague, like anyone in the 16th century, he was quite familiar with death. Besides disease taking lives, Protestants and Catholics were killing each other periodically. It is curious to me that he even felt the need to encourage his readers to contemplate death. How could you NOT in a world surrounded by death? The human capacity to ignore or put off contemplation of death is huge.

I am convinced that I will never fully face my own death until I have a terminal diagnosis. Not only being given the diagnosis, but also having the felt sense in my body that I am checking out. But still, I am trying. COVID has helped move the process forward. I could die. I must be ready. I have decided not to let a good plague go to waste.


Photo by Veit Hammer on Unsplash

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