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When living wills are not enough

August 6, 2015

Tags: living wills, end of life care, Norman Bauman

Norman Bauman posted the following story, about his experience with
his mother, on the Association of Health Care Journalists listserv.
I reprint it here under Creative Commons license 2.0 (with author's permission)
https://creativecommons.org/licenses/by/2.0/

When living wills are not enough
by Norman Bauman

My experience is that living wills aren't too useful (and there is
published research to support that). I would suggest that you talk to
people who had to make end-of-life decisions as their relatives died, and
ask them what their experience was, and if there was any way it could have
worked better. Then you can do a PubMed search and talk to the experts. As
a recent article in JAMA Internal Medicine argued, you can cite studies
until the sun rises in the morning, but readers respond to personal
stories.

My mother died in Florida.

She was an activist on living wills, because her sister had died of
multiple sclerosis, after years in a nursing home, unable to communicate or
know what was going on around her. The costs of the nursing home bankrupted
and destroyed her sister's family.

So she wrote a living will and gave a copy to me and my sister.

My mother died at age 82 of a bowel obstruction. She went to the hospital
with discomfort, they missed the diagnosis, and sent her home with
antibiotics. When she went back to the hospital, she had bowel necrosis.

I got a series of phone calls in New York from nurses. The first nurse told
me that everything was OK and not to worry. With subsequent calls, she was
deteriorating. It was hard to keep her heart going.

I had to make a decision. They could operate on the bowel, or they could
just call it futile and let her go.

Finally, a male nurse said something like, "I think we should consider
putting it in God's hands." I let it pass that I was an atheist.

(That's the way hospitals get you out of an expensive bed. They don't say,
"It's not cost-beneficial to prolong life." They say, "Let's put it in
God's hands." That's what God is for. You can blame him for all your
mistakes and tough decisions. "God wouldn't want us to waste taxpayer money
on unnecessary care.")

So I pulled out my mother's living will, a boilerplate from the Society for
the Right to Die (now called Choice in Dying), with boxes checked and
blanks filled out.

It says, "I direct my attending physician to withhold or withdraw treatment
that merely prolongs my dying, if I should be in an incurable or
irreversible mental or physical condition with no reasonable expectation of
recovery."

Well, that sounds nice in principle. But it's not so easy in application.
What's "irreversible"? How do you know when you have "no reasonable
expectation of recovery"?

My mother was adamant about being independent and living a normal life. She
liked to go to Bingo games, and go to the restaurant with her friends. She
didn't want to wind up in a nursing home like her sister. She often said
she'd rather be dead than wind up like her sister. She also had painful
arthritis and incontinence, and often said she'd lived long enough.

I asked the nurse, "For people in a situation like hers, if she had this
operation, what are the chances that she would leave the hospital and
return to a normal life?"

The nurse said, "Of all the people I've seen like this, less than 1% got
out."

Well, I wouldn't pass up a 1% chance. of returning to her previous quality
of life. But I know how these things work. There was a much greater than 1%
chance that she wouldn't return to normal life, but instead would wind up
like her sister.

So I thought, OK, if it's only 1% chance, she wouldn't want that.

But this guy was only a nurse. It turned out that I could talk to the
surgeon who would operate.

I asked the surgeon the same question. "For people in a situation like
hers, if she had this operation, what are the chances that she would leave
the hospital and return to a normal life?"

He said, "60%."

I said, "Hell, those are pretty good odds. Go ahead."

So he did operate. But it was too late. She died a day or two after the
surgery. I don't know whether it was reasonable to expect the hospital to
catch the blocked bowel the first time, but there aren't too many lawyers
who would take a malpractice suit for an 82-year-old woman who was in pain
from arthritis and kept saying that she was ready to die.

All in all, the living will didn't do much good. It was nice to look at
while I was on the phone to the nurse and doctor, but it didn't answer the
important practical questions for us.

The first question is, "Do you believe that doctors can discontinue
treatment, or should they do everything possible to keep you alive?" There
are people like the families of Jahi McMath and Ariel Sharon, and Jeb Bush,
who think that God wants you to do everything possible and discontinuing
treatment is murder. For them, there is no decision. (Except "Who pays for
it?")

For those of us who have to decide, the significant, hard question is, do
you have a reasonable expectation of recovery? You can also play games
with, "What if you had to choose between a 50% chance of recovery, and a
50% chance of going to a nursing home? 10% and 90% 1% and 99%?"

But for my mother it was simple. If you have a reasonable chance of
recovery, and living a reasonably normal life, do it. If not, pull the
plug.

There are lots of articles in the medical journals about this. The living
wills, like Choice in Dying promotes, aren't really too helpful. They just
separate the "Doctor, do everything to save my mother" families from the
ones where you really have to make a decision. I'd like to see useful
advice and guidelines, not platitudes.

If you're on deadline and you want to use my experience in print, go ahead.
Creative commons. My mother would have liked the idea that her death was
used to serve an educational purpose.

(That gives me an excuse to quote one of my favorite stories from a case
history in the NEJM:
http://www.nejm.org/doi/full/10.1056/NEJMcpc079028
Case 34-2007 ? A 77-Year-Old Man with Ear Pain, Difficulty Speaking, and
Altered Mental Status
Martin A. Samuels, M.D., R. Gilberto Gonzalez, M.D., Ph.D., Arthur Y. Kim,
M.D., and Anat Stemmer-Rachamimov, M.D.
N Engl J Med 2007; 357:1957-1965 November 8, 2007 DOI: 10.1056/NEJMcpc079028

Dr. Harris: Would either of the patient's sons, Dr. Thomas Lee or Dr.
Richard Lee, like to comment?

Dr. Thomas H. Lee, Jr. (Internal Medicine, Brigham and Women's Hospital):
We learned from this case that the care of patients does continue after
they die. The performance of the autopsy and the careful review of all
aspects of this case for this conference provided us with two opportunities
that I believe every family who loses a loved one would appreciate. The
first was the opportunity to know what caused his death. During
hospitalization, we knew that there was a suspicion of a fracture on the CT
scan; after my father's death, we left the hospital believing that his fall
on the ice had caused the fracture and therefore his death. After the
autopsy, which showed no fracture, we realized that perhaps the fall had
not caused his death. After the discussion at this conference, we now have
a final answer.

The second opportunity is to have something good arise from tragedy. My
brother and I know that our father, as a professor at the Massachusetts
Institute of Technology, would have been completely in favor of having his
death contribute to the education of physicians who will care for patients
in the future. He would have joked that this was his final publication, and
I would have said to him, "It is your first in a journal worth reading.")

This is published under the Creative Commons attribution license, which lets others distribute, remix, tweak, and build upon your work, even commercially, as long as they credit you for the original creation.
In this case, the original creation was a post by Norman Bauman on the listserv of the Association of Health Care Journalists, as part of a discussion 8-4-15 on "FL health care provisions, patient rights."