Compassionate, informed advice about healthcare decision making

Archive for the ‘Advance Care Planning’ Category

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.

You Can’t Get What You Want

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I changed my mind. Since 1990 I had a question to help people make decisions about end-of-life medical treatments. 3.6 million copies and six editions of my Hard Choices for Loving People book have included this question I am now changing.

One essay in a medical journal convinced me in an instant. I read it and it rang true. Dr. Margaret L Schwarze, et. al. wrote “You Can’t Get What You Want: Innovation for End-of-Life Communication in the Intensive Care Unit.” I just recently found this piece from January 2016.

The question I am changing is used so much by doctors, nurses, chaplains and social workers it is almost reflexive. Say you have a demented 85-year-old patient in a nursing home and the family is having to decide about CPR. After explaining the options and prognosis the doctor may then ask, “What would your mother want?” We in healthcare ask this all the time.

We have been well-meaning all these years. We are trying to get the opinion of a patient who can no longer give an opinion. We are being advocates for patient autonomy through the substituted judgement of a family member. The essay authors see several problems with this question.

Several problems with this question

“First, it encourages the family to reflect on treatments, like life support or comfort care, rather than goals.” I am reminded of the doc who cared for my mother. Her dementia had been advancing for years and then she fell and broke her hip. His question to my sister and me was, “How did your mother feel about her dementia?” In many words we told him she hated it and he said, “Okay, here is what we are going to do.” He never asked what treatment plan she would want. He wanted to know how she felt about her underlying condition.

The essay continues with the flaws in the “want” question. “Second, it can shut down discussion; once the family makes a choice, what else is there to say?” The family of the 85-year-old may respond, “Mom loved life. She wants to live. Do everything to keep her alive.” Does she want to live on a machine for weeks or months? Would she want to live not knowing her family? What about the pain and suffering aggressive medical care can inflict? The “want” question cut off this discussion of the patient’s values.

“Third, want is aspirational and evokes fantasies. When we ask patients or their surrogates what they want, we release the constraints of the decision-making context and allow consideration of possibilities outside the boundaries of clinical reality.” A healthcare professional has perhaps seen hundreds of patients like the one where a family is now making a decision about life-prolonging procedures. The docs and nurses know the almost certain disability and/or death awaiting this patient. The family dreams of wanting mom back to how she was before. It’s not happening no matter what is done in most cases.

So, what do we ask if not “what would your mother want?”

Since the first edition of Hard Choices in 1990 I have included “What does the patient want?” as one of five questions to ask as an aid to making end-of-life decisions. Here is what I am changing it to with the next printing:

  1. What does the patient think about their current and probable future condition? A patient with decision-making capacity can speak for themselves. If they are unable to express an opinion then try to imagine how they would think about the state they find themselves in. If the likely outcome of further life-prolonging procedures would lead to increasing disability and/or greater mental decline, what would they say about that? The purpose of this question is to try and imagine what the patient values most.

 

This is a more open and honest discussion of the patient’s values rather than a yes or no about a particular treatment. The family can inform the medical staff about what the patient felt was important. Hopefully, the staff can draw up a treatment plan that affirms those values and is realistic about what further treatment can and cannot accomplish.

In the summer of 1968, as a college student, I did ministry work on the streets of Newark, New Jersey a year after the city had been engulfed in riots. My mentor, Bill Iverson, encouraged us to follow Socrates and ask people questions instead of trying to preach at them. He had a great saying which applies here.

“Ask people the right question and they will give you the right answer.”

Doctors Choose LESS Treatment When Dying

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Here is a great article from 3 years ago about physicians choosing less aggressive treatments as they are dying than does the general public.

http://www.wsj.com/articles/SB10001424052970203918304577243321242833962#

Hank

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Nelson Mandela and the End of Life

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My friend Connie Holden has written a great piece for the Boulder, Colorado newspaper the Daily Camera. In “Mandela: A Second Prison Sentence?” she reflects on the last months of Nelson Mandela’s life and encourages the readers to consider how they would like to spend their last days. Connie is an oncology nurse, former director of a hospice program, and now the co-founder of The Conversation Project in Boulder County. Thanks, Connie!

 

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