Futility and Moral Distress

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Futility and Moral Distress

• John D. Lantos M.D.
• John B. Francis Chair in Bioethics
• Center for Practical Bioethics
• Professor of Pediatrics and Medical Ethics
• The University of Chicago and MacLean Center for
  Clinical Medical Ethics

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Emilio Gonzalez case

• DOB 12-3-05,
• G1P0 mother, 35 weeks, 2525g.
• Feeding difficulty and apnea in NICU
• Abnormal head and eye movements ?
• MRI normal
• AER auditory neuropathy
• EEG seizures
• DX Leighs disease

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Emilio Gonzalez case

• 12/06 (age1y) viral illness ? PICU ?
  neurologic decompensation
• 2/07 - Semi-comatose, hypotonic, no gag, vent,
  N-J tube, sub-acute seizure activity,
  pneumothraces requiring chest tubes.
• Doctors recommend DNR, withdrawal of
  life-support.
• Mom refuses.

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Ethics committee opinion

• Current treatment a constant assault on Emilios
  fundamental human dignity. Burdens clearly
  outweigh benefits.
• Medically inappropriate to continue aggressive
  care measures, including but not limited to the
  use of the ventilator.
• Ethics Committee recommends
• Only comfort measures (e.g. hydration, pain
  control and interventions to decrease the
  patients suffering ).
• New complications should not be treated, except
  with additional palliative measures.
• The patients code status be changed to a DNR.
• Appropriate spiritual and pastoral care for
  family.
• http//www.lifeethics.org/www.lifeethics.org/2007/
  03/leighs-disease-long-post-on-end-of-life.html

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Outcome of Gonzalez case

• Texas futility law invoked
• No other facility would take patient
• Court order to withdraw vent
• Mother appealed

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Catarina and Emilio Gonzalez, PICU, Brackenridge
Hospital. Austin, TX.

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Catarina Gonzalez, testifying before Texas State
Legislature, 2007, "If they think a mother
should give up her son, they're dumb, they're
stupid."
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Series of medical futility cases

• Baby L severe neurologic damage
• Baby K anencephaly, trach
• Sun Hudson thanatophoric dysplasia

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The Sun Hudson Case

• Sun Hudson - thanatophoric dysplasia
• Hospital recommended discontinuation of vent -
  mother disagreed.
• Mother given 10 days to find a new facility.
• Hospital attempted to contact 40 facilities,
  unable to find one willing to accept the patient
  in transfer.

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Sun Hudson case

• Judge ruled that extubation contrary to the
  wishes of Wanda Hudson was legal.
• Sun was sedated and vent discontinued.
• He died in minutes.
• Mother wanted media present.
• Hospital blocked media, claiming privacy concerns.

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Wanda and Sun Hudson
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I talked to him, I told him that I loved him.
Inside of me, my son is still alive," Wanda
Hudson told reporters afterward. "This hospital
was considered a miracle hospital. When it came
to my son, they gave up in six months .... They
made a terrible mistake."
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Public perceptions of CPR

• Movies
• Television shows
• Fairy tales

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Diem, Lantos, Tulsky, NEJM 1996
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Moral distress

• Moral distress occurs "when one knows the right
  thing to do, but institutional constraints make
  it nearly impossible to pursue the right course
  of action.
• Jameton, 1984

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Moral distress

• The painful psychological disequilibrium that
  results from recognizing the ethically
  appropriate action, yet not taking it, because of
  such obstacles as lack of time, supervisory
  reluctance, an inhibiting medical power
  structure, institutional policy, or legal
  considerations
• Corley et al., 2001

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Symptoms of moral distress

• anguish,
• sleeplessness,
• nausea,
• migraine headaches,
• gastrointestinal upset,
• tearfulness,
• a sense of isolation

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I was a trembling because I'd got to decide,
forever, betwixt two things, and I knowed it. I
studied a minute, sort of holding my breath, and
then says to myself "All right, then, I'll go to
hell It was awful thoughts, and awful words, but
they was said. And I let them stay said.
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If the infant merely exists at a level that is
hardly human, it is much better for the other
children and the parents to have him cared for
elsewhere. (1946, p 478)
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The is no reason to feel guilty about putting a
Downs syndrome baby away, whether it is put
away in the sense of hidden in a sanitarium or
in a more responsible lethal sense. It is sad,
yes. Dreadful. But it carries no guilt. True
guilt arises only from an offense against a
person, and a Downs in not a person. Theologian
Joseph Fletcher, Atlantic Magazine, April 1968
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Maria would not stop bleeding. It defined her
now. She lay there, and it just went on, it
wouldnt even slow down. Nothing we did, nothing
we could think of, had any effect. She was a
leaking vessel, day and night, and she was alert,
watching as she filled up with bloodBy the end
of the week none of her own blood was left in her
body. She was full of the blood of strangers.
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I think we should seriously consider the ethics
of performing such aggressive procedures in this
man. Its high time that we consider withdrawing
support. Another attending came on service,
and he had different views, This is a young
man, he would say, This is exactly the sort of
patient we should be most aggressive with.
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Is talking about it enough?

• Examples of talking about moral distress
• The Bluest Eye Toni Morrison
• A Personal Matter - Kenzaburo Oe
• Talking about it may be the best we can do

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The very first words of the novel are Quiet as
its kept The words are conspiratorial.
Shhh, dont tell anyone else. Noone is allowed
to know this. It is a secret between us and a
secret that is being kept from us. The
conspiracy is both held and withheld, exposed and
sustained. The act of writing the book was the
public exposure of a private confidence.
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The fact that an abnormal baby was born to me and
my wife was a simple accident. Neither of us is
responsible. All I can do is leave him at a
university hospital and make certain that hell
weaken and die naturally.
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What was he trying to protect from that monster
of a baby that he must run so hard and
shamelessly? What was it in himself he was so
frantic to defend?
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Conclusions

• Futility cases are rare but disturbing
• They will not go away
• Talking about it helps
• Not us versus them
• Everybody is suffering
• Gradual societal shifts result
• If there was an easier solution, wed have found
  it by now.

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