Compassionate, informed advice about healthcare decision making

Archive for the ‘Withdrawing Life Support’ Category

You Can’t Get What You Want

Posted by

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.”

We Didn’t Want to Put Him Through That Again

Posted by

I just got off the phone with the widow of an old friend of mine. She called to let me know her husband died last week. I hadn’t heard. He was 70. Alzheimer’s.

I’m not sure he knew me

I last saw him in October on my way to a speaking engagement near Orlando. This was the week before he entered a memory care unit. I’m not sure he knew me. He told stories and laughed like he always did but his words made no sense.

We had grown up in the same neighborhood and I followed him three years behind to the University of Florida. He played baseball, me football. He went into law, me the ministry. Over the years I would stop by and we would go fishing. He loved to fish the lakes.

His wife told me he died from aspiration pneumonia. A very typical way for advanced dementia patients to go. They get food or fluid in their lungs and an infection follows. Often these patients are treated with antibiotics and the pneumonia is cleared up. Then the decline of the patient continues and they get pneumonia again, etc., etc.

“We didn’t want to put him through that again.”

They refused antibiotics and called hospice. She told me he died the most peaceful death.

Around Christmas he had gone into the hospital and “it was a horrible experience.” “We didn’t want to put him through that again.” They didn’t.

I told her she did the right thing. I said, “It is so routine to put the people in the hospital, pump antibiotics into them and they are saved only to get worse. I cannot say enough good things about how you handled this. It is so out of the norm but in my view the best of care.”

Hank

 

Photo by Search Engine Pro on Unsplash

Doctors Choose LESS Treatment When Dying

Posted by

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

Photo by Online Marketing on Unsplash

Nelson Mandela and the End of Life

Posted by

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!

 

Choosing Death Over a Paralyzed Life

Posted by

It is so easy to theorize about what you would do. What if you were on life support with the prospect of spending the rest of a long life as a quadriplegic on a ventilator.  Would you say “good bye” to your wife who is carrying your unborn child and ask them to turn off the vent?

That is exactly what Tim Bowers did. Click here for the telling of the story.

Just over a week ago Bowers was hunting and fell sixteen feet to the ground from a deer stand. He fractured three vertebrae and damaged his spinal cord. The medical team advised his family that he would be paralyzed from the shoulders down and probably dependent on machines to breathe for him for the rest of his life. The family wanted to see if the patient could participate in the decision-making process.

“Do you want this?”

When he woke up from the sedatives that had kept him unconscious he could not speak but could answer yes-and-no questions. “Do you want this?” they asked, meaning “Do you want to be kept alive on this machine?” He shook his head “No.” They removed him from the ventilator and he died a day after the accident.

Well. Well?

This is what we in the medical community have been advocating. NOT that people be allowed to die. What we want is for patients to be involved in the decision-making that might end his or her life. They woke Bowers up and asked and he essentially said, “Let me die.”

As soon as I read this story I thought, “I know many paralyzed people on vents who might say he made the wrong decision.” Think Stephen Hawking.  Sure enough I found one blogger who is paralyzed who took issue with how this case was handled.

Perhaps the decision came too soon after the injury. Law professor Thaddeus Pope wonders whether Bowers had “sufficient decision making capacity at the time he made the decision?” In states where physician assisted suicide is legal there is a waiting period from the first request for life-ending medication to a second and final request. Pope asks whether or not Bowers was fully informed about the “options and possibilities of life as a paralyzed individual.”

Give a little time

I tend to agree. Give a little time. If the patient persists in his request to be taken off the machine, by all means, comply.

Years ago I was called to the beside of a heavily sedated man on a ventilator after a heart attack. His wife explained that he had been on a vent before with his heart condition and wrote a living will so he would never be on a breathing machine again. I told the ICU nurse about my conversation and she said, “It is too soon to think about that.”

Well, he was able to get off the vent and out of ICU. I visited him a few days later. He was walking around his hospital room gathering things as he prepared for a transfer to another hospital to have a defibrillator implanted in his chest. I asked him, “How do you feel about being on a ventilator again?”

He said, “I am so glad they did?”

There you go.

Quality of Life Publishing Logo

Quality of Life Publishing Co. is the proud publisher of Hank’s books, as well as other branded educational materials for health care & end-of-life care.

www.QOLpublishing.com

Copyright 2020, Hank Dunn. All rights reserved. Website design by Brian Joseph Studios

Volume Discounts for Branded Book Orders

Minimum quantity for branded books is 100. English and Spanish branded books are sold separately. Click here for more information or contact us with questions.

Black

  • 100 to 249 copies: $3.97 each
  • 250 to 499 copies: $2.81 each
  • 500 to 999 copies: $2.21 each
  • 1000 to 1499 copies: $1.66 each
  • 1500 to 1999 copies: $1.40 each
  • 2000 to 3999 copies: $1.27 each
  • 4000+ copies: $1.08 each

Color

  • 100 to 249 copies: $6.62 each
  • 250 to 499 copies: $3.92 each
  • 500 to 999 copies: $2.76 each
  • 1000 to 1499 copies: $1.93 each
  • 1500 to 1999 copies: $1.58 each
  • 2000 to 3999 copies: $1.41 each
  • 4000+ copies: $1.14 each

Volume Discounts for Unbranded Book Orders

Discounts apply to the total books ordered of all titles. Mix and match to get quantity discounts on unbranded books.

  • 1 to 9 copies: $7.35 each
  • 10 to 24 copies: $5.13 each
  • 25 to 49 copies: $4.24 each
  • 50 to 99 copies: $3.75 each
  • 100 to 249 copies: $2.87 each
  • 250 to 499 copies: $2.37 each
  • 500 to 999 copies: $1.98 each
  • 1000 to 1499 copies: $1.54 each
  • 1500 to 1999 copies: $1.32 each
  • 2000 to 3999 copies: $1.21 each
  • 4000+ copies: $1.05 each
There are no products