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Futility and Moral Distress


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Title: Futility and Moral Distress

Futility and Moral Distress
  • John D. Lantos M.D.
  • Childrens Mercy Hospital
  • Kansas City, MO

What well do today
  • Review history of the futility debate
  • Explain the concept of moral distress
  • Cases of futility and moral distress
  • When doctors disagree about futility
  • Examine Texas futility law
  • Offer a conceptual framework

What do we mean by futility?
  • Old-fashioned futility a treatment that wont
  • Modern definition an intractable disagreement
    between doctors and patients (or surrogates)
    about the appropriateness of providing marginally
    beneficial treatment.

The (modern) invention of futility The Baby
Doe guidelines -1984
  • Controversy triggered by a baby with Down
    Syndrome and esophogeal atresia
  • Parents did not consent to surgery
  • Federal government tried to develop criteria for
    deciding when parental refusals were permissible.

Treatment may be withheld only if
  • Baby is chronically and irreversibly comatose
  • The treatment is medical futile
  • The treatment is virtually futile and inhumane

New questions
  • What, exactly, is futile?
  • Do we know it when we see it?
  • Is futile worse than virtually futile?
  • When is treatment inhumane?

Pediatricians views of futility
  • What do the Baby Doe regulations mean?
  • Survey of neonatologists about the interpretation
    of the guidelines
  • Trisomy 13 and congestive heart failure
  • 530g 25 week preemie with large IVH
  • Congenital hydrocephalus, blindness, severe
    cognitive impairment
  • Koppelman et al NEJM 1988

Views of futility
  • Fundamental disagreement among pediatricians
    about what the rules required
  • 22-47 of neonatologists thought treatment
  • 18-52 thought treatment not required
  • Many were uncertain

Koppelmans conclusions
  • Widespread practice variation
  • Widespread moral variation
  • Regulations did not clear up ambiguities

Around the same time
  • Futility controversies in the care of adults
  • Initial focus on CPR

Must we always provide CPR?
  • Case presentation of a woman with metastatic
    ovarian cancer for whom no further chemotherapy
    was available
  • Patient wanted everything done.
  • Can we just say no?
  • Blackhall LJ. NEJM, 1987

An avalanche of scholarly writing
  • Thousands of articles, dozens of books
  • Hospital policies
  • Even state laws (well, just Texas)

Assessing the futility movement
  • Medical journals - 50/50
  • Courts - futility virtually always loses
  • Legislatures dont want to touch it
  • Many hospital policies, questionably legal
  • Clinical practice??
  • Helft et al, NEJM, 2001

Moral distress
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

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
  • Corley et al., 2001

Moral distress
  • Impossible demands.
  • Policies that violate personal beliefs.
  • Cases where every choice is wrong.
  • Societal norms that violate conscience.

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

Moral distress in literature
  • Huckleberry Finn - Twain
  • The Bluest Eye - Morrison
  • A Personal Matter - Oe


One of the great moments of moral distress in
American literature. Huck has to decide whether
to help Jim, the runaway slave, to escape to
freedom, or to turn him in.
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.
The very first words of the novel are Quiet as
its kept The words are conspiratorial.
Shhh, dont tell anyone else. No one 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.
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.
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?
Futility and Moral Distress
Conflict creates moral distress
  • Obligations to patient vs obligations to family.
  • Every choice seems wrong.
  • We are forced to choose
  • Undermines ideas of professionalism

Example 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

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
  • Mom refuses.

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

Ethics committee opinion
  • Treatment is a constant assault on Emilios
    fundamental human dignity.
  • Burdens clearly outweigh benefits.
  • Medically inappropriate to continue aggressive
    care measures.
  • http//www.lifeethics.org/www.lifeethics.org/2007/

Ethics Committee Recommendations
  • Comfort measures only
  • - Code status should be DNR.
  • - Spiritual and pastoral care for family.
  • http//www.lifeethics.org/www.lifeethics.org/2007/

Outcome of Gonzalez case
  • Mother did not accept recommendations.
  • Doctors sought court order.
  • Court ordered withdrawal of vent.
  • Mother appealed.

Catarina Gonzalez, testifying before Texas State
Legislature, 2007, "If they think a mother
should give up her son, they're dumb, they're
Futility cases lead to moral distress all around
  • Mothers forced to watch their children die.
  • Caregivers forced to provide futile care.
  • Hospital administration, judge, forced into
    uncomfortable position.
  • Moral absolutes clash and crash.

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Why do parents demand futile treatment?
  • They may not have been told in terms that they
  • They may come with ideas shaped by portrayals of
    medicine on TV

Miracles and Misinformation on Television
Diem, Lantos, Tulsky, NEJM 1996
Miracles and Misinformation on Television
Diem, Lantos, Tulsky, NEJM 1996
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Resuscitation of E.T.
  • After CPR fails, Elliott's heart-felt love
    revives his friend.
  • E.T.'s red heartlight glows and he miraculously
    bursts out "E.T. Phone home."

(No Transcript)
Take home lesson
  • If you truly love someone, you will not give up,
    even when the doctors have given up.
  • Love can succeed where medicine fails.
  • There is magic in the world.

Furthermore, sometimes doctors disagree among
themselves, giving parents mixed messages
Baby L
  • 2 year old
  • Pregnancy with fetal hydronephrosis and
  • LD decels, thick meconium, Apgars 1, 4, and 5.
  • Stabilized in the NICU.
  • G-tube at 1 month, trach at 7 months.
  • Discharged at 14 months.
  • Paris, et al, NEJM, 1989

Baby L
  • Readmissions with pneumonia and sepsis
  • Four cardiopulmonary arrests
  • Mother continued to demand that everything
    possible be done.
  • Doctors thought further treatment futile and told
    mother No more PICU.

Baby L
  • Ethics committee divided.
  • Mother sought court order for treatment.
  • Doctors claimed it would violate their conscience
    to provide treatment.

Baby L
  • Court appointed guardian ad litem
  • GAL sought a second opinion
  • Patient was severely ill, capable of
    experiencing pain, it was questionable whether
    she would survive even with mechanical
  • Consultant was willing to do everything possible
    to accommodate the parental wishes,
  • Child was transferred to her care.
  • Paris et al NEJM 1989

Baby L
  • Two years later, Baby L remains blind, deaf, and
    quadriplegic and is fed through the gastrostomy.
    She averages a seizure a day. Her pulmonary
    status has improved, but she continues to require
    intensive home nursing 16 hours a day.
  • Paris et al NEJM 1989

Letters to NEJM
  • The authors do not explicitly state on what basis
    they concluded that the requested treatment was
    "futile" and "inhumane." The fact that Baby L is
    still alive suggests that the resuscitation
    efforts were "effective" and thus not "futile."
    The issue was a disagreement over the
    appropriateness of care i.e., what is in the
    best interests of this child.
  • Grodin, NEJM 1990

Letters to NEJM about Baby L
  • It should be obvious from the child's continued
    survival that these expert pediatricians were not
    basing their decisions on a correct assessment of
    the futility of treatment. Instead, their moral
    certainty was based on agreement about the
    child's poor quality of life.
  • Lantos, NEJM, 1990

Not all cases in which doctors disagree get to
court. Were all familiar with them. But what
should we do about them?
A Difference of Opinion
  • A 26 year old cowboy named Mr. Johnson
    develops severe ARDS after a rodeo injury. The
    first words of this story are, I dont think any
    of us here seriously expect this man to survive.

A Difference of Opinion
  • Mr. Johnson develops pneumonia, sepsis,
    respiratory failure, renal failure, anemia, and
    many other problems. Huyler, an intern caring
    for him, describes Mr. Johnson as looking like a
    swollen toad on a ventilator.

A Difference of Opinion
  • Huyler writes, in that world weary tone of
    interns everywhere, He had unfailingly robbed
    me of sleep. I had come to dread him. I had
    hoped many times that he would just die. He was
    as nearly dead as a human being can be, lying at
    the edge but never quite crossing over. He always
    tormented us like this,

A Difference of Opinion
  • One night, Huyler diagnoses a pneumothorax,
    inserts a chest tube, and Mr. Johnsons blood
    pressure comes up. In the morning, he is
    reprimanded by his attending,

A Difference of Opinion
  • I think we should seriously consider the
    ethics of performing such aggressive procedures
    in this man, the attending says, Its high time
    that we consider withdrawing support.
  • There was a long silence. Hes a young guy,
    I protested. And weve done it before. And it

A Difference of Opinion
  • Around this time, another attending came on
    service, and for the next few weeks, he
    alternated call nights with his colleague. 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.

A Difference of Opinion
  • A bizarre dynamic developed. On even days,
    we did almost nothing, checked no lab work,
    stopped antibiotics and tube feeds, and nodded
    solemnly as the attending shook his head and said
    things like the most important thing we can do
    now is keep this man comfortable.

A Difference of Opinion
  • On odd days it was the full-court press. We
    worked to undo the previous inactivity, checking
    arterial blood gases, blood cultures, X rays,
    adding antibiotics and fluids, tinkering with the
    ventilator. We nodded solemnly as the attending
    said things like, This man deserves everything
    we can give him.

A Difference of Opinion
  • Huyler knew Mr. Johnson intimately, I had
    examined him dozens of times, turned him over to
    look at his back, put my gloved finger in his
    mouth, in his rectum, in the interior of his
    chest cavity.
  • In other ways, though, he didnt know him at all,
    I had never once exchanged a single word with

A Difference of Opinion
  • Then Huyler goes off service.
  • Mr. Johnson readers and the family - are left
    in limbo, caught between the diametrically
    opposed philosophies of the two attending

A Difference of Opinion
  • Was this inhumane and futile treatment?
  • Was it a heroic attempt to save the life of a
    young man with a serious but not necessarily
    fatal illness?
  • Was it good medicine?
  • Was it torture?
  • Should the family have been told about the
    disagreement and asked to choose?

A Difference of Opinion
  • Beautifully captures the seeming futility and the
    uncertainty of modern medicine.
  • Are we helping or hurting, rescuing or torturing?

Public policy responses to futility the Texas
Appropriate Care Act
Texas law
  • When an intractable disagreement arises, it
    triggers a seven-step process
  • 1. Family must be given written information that
    an ethics consultation will be called.
  • 2. Family must be given 48 hours notice and be
    invited to participate in the ethics
  • 3. The ethics committee must provide a written
    report detailing its findings to the family.

Texas futility law
  • 4. If the ethics consultation process fails to
    resolve the dispute, the hospital, working with
    the family, must try to arrange transfer to
    another physician or institution.
  • 5. If after 10 days (measured from the ethics
    consultation report) no such provider can be
    found, the hospital and physician may
    unilaterally withhold or withdraw futile

Texas futility law
  • 6. The patient or surrogate may ask a judge to
    grant an extension of time before treatment is
    withdrawn. This extension is to be granted only
    if the judge sees a reasonable likelihood of
    finding a willing provider if more time is

Texas futility law
  • 7. If the family does not seek an extension or
    the judge fails to grant one, futile treatment
    may be unilaterally withdrawn by the treatment
    team with immunity from civil and criminal

65 hospital-years of data
  • 2,922 ethics consults
  • 974 were about medical futility
  • 65 had 10-day letters issued.
  • 11 patients were transferred within 10 days,
  • 22 patients died during the 10-day period,
  • 27 patients had the disputed treatment withdrawn,
  • 5 patients had treatment extended
  • Fine RL, Chest, 2009 (and Dallas Morning News,

Four elements of futility controversies
  • Power
  • Money
  • Trust
  • Hope

  • Policies that empower patients lead to a
    randomness that demoralizes professionals.
  • Policies that empower doctors run the risk of a
    false generalization of expertise.

  • Is it about the money?
  • Most doctors say No.
  • Most other observers say, Of course.
  • One can philosophically agree that families have
    the right to demand futile treatment without
    addressing the question of who should pay for the

  • Test question should it be forbidden for a
    family to take a brain dead patient home on a
    ventilator if the family will pay cash for
    private duty nurses and RTs to provide the care?
    What if they want to keep the patient in the
  • Is it morally wrong or just economically

  • Futility controversies arise, in general, because
    patients/families distrust doctors.
  • By empowering doctors to unilaterally override
    patients demands, futility policies exacerbate,
    rather than relieve, that distrust.

Four levels of mistrust
  • Patients havent been told
  • Patients havent understood
  • Patients understand what theyve been told but
    dont believe it.
  • Patients understand, believe it, but disagree
    about fundamental values.

  • The essence of medicine is to give hope for
    victory in a struggle that we all lose.
  • Medicine aims for health we all get sick.
  • Medicine preserves life we all die.
  • Medicine relieves pain we all suffer.
  • Medicine comforts we all fear.

Futility, prayer, and miracles
  • A delicate balance between
  • faith,
  • hope,
  • acceptance,
  • cynicism,
  • despair.
  • What do we hope for when there is no hope.

  • There are true futility cases
  • They are rare
  • They are troublesome
  • Most cases that cause moral distress are not
    truly about futility.

Two central distinctions
  • Quality of life determinations
  • In PVS, mechanical ventilation works
  • The problem is that it is not futile!
  • Resource allocation decisions
  • If they treatment truly will not work, then the
    downside is the costand if the treatments really
    dont work, the cost is minimal.

The central paradox of futility
  • Futile treatments are only deeply problematic
    when they work.
  • Futile treatments that truly dont work are not
    particularly troubling.

Key distinctions
  • Futility as a concept to help communication and
    shared decision making
  • vs.
  • Futility as a way to avoid communication and
    shared decision making

Using futility as a trump to mask QOL decisions
or resources allocation decisions ultimately
undermines trust and exacerbates the problem is
tries to solve.
A surprise ending
  • Six months later I was walking down the long
    hall back to the ER from the cafeteria. It was
    mid-afternoon, a slow day. The door to the
    pulmonary clinic was open as I passed.

A surprise ending
  • A few patients sat in plastic chairs, waiting
    for their appointments. In one corner, leaning
    casually against the wall, a man stood reading a
    newspaper. The paper obscured his face, but as
    he turned the page I saw it, and I stopped
    immediately. I felt a strong and sudden force.
    It took me a few seconds.

A surprise ending
  • I knew the man. I knew his face was
    significant, but I didnt know why. Then I
    realized, disbelieving.

A surprise ending
  • Mr. Johnson? I asked tentatively,
    stepping in through the clinic door.
  • He looked up from his newspaper.
  • Are you Mr. Johnson? I asked, beginning to
    feel foolish.
  • Yes, he said, looking at me suspiciously,
    Do I know you?

And thats how the story ends
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