Transcript Some thoughts on medical futility

Some thoughts on medical
futility
John D. Lantos M.D.
Children’s Mercy Bioethics Center
Kansas City, MO
©Copyright 2010
What do we mean by “futility?”
• Old-fashioned futility: a treatment that
won’t work
• Modern definition: an intractable
disagreement between doctors and
patients (or surrogates) about the
appropriateness of providing marginally
beneficial treatment
Note
• When treatments are absolutely futile, they
are less controversial. When they prolong
life (or prolong dying), they cause moral
distress.
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
The (modern) invention of
futility: The “Baby Doe”
guidelines -1984
• They came up with the idea of “futility”
• Treatment may be withheld only if:
– A 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?
Must we always provide CPR?
• NEJM paper by LJ Blackhall, 1987
• Case presentation of a woman with
metastatic ovarian cancer for whom no
further chemotherapy was available
• Patient wanted “everything done”
• Blackhall asked, “Can we just say no?”
An avalanche of scholarly writing
• Thousands of articles, dozens of books
• Hospital policies
• Even state laws (well, just Texas)
Ethics, policy, and economics
1980s – cost-containment through reduced
reimbursements for hospitals - DRGs
Ethics, policy, and economics
• 1970s: ICUs, dialysis, TPN, LVADs
• 1980s: prospective payment to hospitals
• 1990s: Patient self-determination act,
growth of hospice and palliative care
• Growing tensions between different
approaches to end-of-life care
Different phases of the futility
debate
– Neonatal issues and Baby Doe
– Futility determinations with competent adults
• Goal of treatment
• Chance of success
– Four moral domains of futility controversies
– Recent legislation
Pediatricians views of futility
• What do the Baby Doe regulations mean?
• Koppelman et al – NEJM 1988
– Surveyed neonatologists about the
interpretation of the guidelines in real cases:
• Trisomy 13 and congestive heart failure
• 530g 25 week preemie with large IVH
• Congenital hydrocephalus, blindness, severe
cognitive impairment
Views of futility
• Fundamental disagreement among
pediatricians about what the rules required
– 22-47% of neonatologists thought treatment
required
– 18-52% thought treatment not required
– Many were uncertain
Koppelman’s conclusions
• Widespread practice variation
• Widespread “moral” variation
• Regulations did not clear up ambiguities
Illusion of futility in clinical practice
• Two elements to any futility determination
– The goal of therapy
– The probability of success
• Goal of therapy - determined by patient
• Probability of success - determined by MD
– Lantos et al. Am J Med. 1988.
Questions
• Can patients choose any goal?
• How accurate are physicians’
assessments of the likelihood of success
or failure?
• What role should cost play in the
decisions?
• The physician's response in such cases
should be: "I am sorry, but we don't do
that here." This is done not because the
patient no longer has any value or
because the physician lacks respect for
the family's wishes. It is done because
the obligation of physicians, as
articulated in the Hippocratic Oath, is to
act for the benefit of the patient
according to their ability and judgment.
Paris JJ et al. NEJM. 1993.
Four elements of the futility
controversy
•
•
•
•
Power
Money
Trust
Hope
Power
• Policies that empower patients lead to a
randomness that demoralizes professionals.
– Do we have to do anything that patients ask?
– What about our own moral values?
• Policies that empower doctors run the risk of a
false generalization of expertise.
– Do doctors know best about what goals are worth it?
– Who decides what medical care is for?
Trust
• 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 haven’t been told
• Patients haven’t understood
• Patients understand what they’ve been
told but don’t believe it
• Patients understand, believe it, but
disagree about fundamental values
Futility and money
• 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 treatment
Futility and money
• 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 hospital?
– Is it morally wrong or just economically wasteful?
Futility and hope
• 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 and hope
• What do we hope for when “there is no hope”?
– More treatment anyway?
– A good death?
– Pain relief and emotional comfort?
Futility, prayer, and miracles
• A delicate balance between
–
–
–
–
–
faith
hope
acceptance
cynicism
despair
Assessing the “futility movement”
• A movement to legally empower doctors to
override patient’s requests for treatments that the
doctors think are futile
–
–
–
–
medical journals - 50/50
courts - “Futility” virtually always loses
legislatures - some statutory futility policies
hospital policies - many policies, all different,
questionably legal
– clinical practice - ??
Texas futility law
1. The family must be given written information
about hospital policy on the ethics consultation
process.
2. The family must be given 48 hours’ notice and
be invited to participate in the consultation
process.
3. The ethics consultation committee must provide
a written report detailing its findings to the family.
Texas futility law
(cont’d)
4. If the ethics consultation process fails to resolve
the dispute, the hospital, working with the family,
must try to arrange transfer of the patient 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” therapy.
Texas futility law
(cont’d)
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 determines that there is a reasonable
likelihood of finding a willing provider if more time
is granted.
Texas futility law
(cont’d)
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 prosecution.
Resolution of Futility by Due Process: Early
Experience with the Texas Advance Directives Act
• Six futility cases pursued through the disputeresolution process,
– three families agreed to withdrawal of life-sustaining
treatment within a few days of receiving the formal
written report from the ethics committee.
– In two cases, the patient died during the 10-day
waiting period without an alternative provider having
been found.
– In one case, an alternative provider was located, but
the patient died while awaiting transfer.
Fine and Mayo. Ann Int Med. 2003.
Texas futility cases
• Ms. Habtegiris, a 26-year-old Eritrean
immigrant, diagnoses with with metastatic
angiosarcoma in August, 2005.
Texas futility cases
• 11/7/05 - discharged home with palliative
medications designed to treat pain and
shortness of breath.
• 11/15/05 - increasing pain and shortness of
breath, multiple bilateral lung masses,
significant pleural effusions, weight loss.
Texas futility cases
• 11/16, 3 doctors agree that there was no
effective treatment, recommended hospice.
• 11/17-21, continued decline.
• 11/22, team recommended discontinuation of
life support. Family refused.
Texas futility cases
• 11/23 a family meeting Baylor offered to pay
for the services of an immigration attorney to
assist the family.
• 11/24 to 27, the patient continued her
inexorable decline.
Texas futility cases
• 11/28, SW gave family written 48-hour notice
of a more formal review process with the
hospital ethics committee.
• Family also given a written statement
explaining the process when such a
disagreement arises, as well as a list of
possible alternative providers.
Texas futility cases
• 11/30, family met with ethics committee for formal
review of the case. Ethics committee supported
recommendation of the treating physicians to
remove life-sustaining treatment and focus on
comfort care only.
• 11/6, SW's progress notes report that the family
could not accept the discontinuation of life
support. Family asked about a lung transplant.
Texas futility cases
• 11/9-11, Twelve different health care facilities
refused to accept the patient in transfer. The
nurses continued to maintain the patient's
comfort.
• 11/12, patient extubated. According to MD
and RN, patient died peacefully and rapidly
within seconds.
Texas futility cases
• Most resolved before entire process ended
• Many involved disempowered people - e.g.
mentally ill, immigrants
• Does the policy work?
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: Leigh’s disease
Emilio Gonzalez case
• 12/06 (age:1y) – 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 lifesupport
• Mom refuses
Catarina and Emilio Gonzalez, PICU, Brackenridge Hospital, Austin, TX
Ethics committee opinion
• Treatment a constant assault on Emilio’s
fundamental human dignity
• Burdens clearly outweigh benefits
• Medically inappropriate to continue
aggressive care measures
• http://www.lifeethics.org/www.lifeethics.org/2007/03/leighs-diseaselong-post-on-end-of-life.html
Ethics Committee Recommendations
- Comfort measures only
- Code status should be DNR
- Spiritual and pastoral care for family
• http://www.lifeethics.org/www.lifeethics.org/2007/03/leighs-disease-longpost-on-end-of-life.html
Outcome of Gonzalez case
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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 stupid."
Another example: Sun Hudson
• Baby with thanatophoric dysplasia
• Doctors recommend 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
Sun Hudson case
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•
•
•
•
Judge ruled that extubation was legal
Sun was sedated and vent discontinued
He died in minutes
Mother invited media
Story on the front pages
Wanda and Sun Hudson
“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."
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
65 hospital-years of data
• 2,922 ethics consults
• 974 were about medical futility
• 65 had 10-day letters issued.
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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, 2/15/07)
Professional writing
can do something
similar – take the
emotional traumas
and moral conflicts
that are inherent in
our work, turn them
into stories, and sort
a process of
connection,
cohesion, and
movement.
An excellent
short story
about futility
“A Difference
of Opinion”
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 don’t
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
every other problem to which critically ill ICU
patients are heir. 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. Johnson’s 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, “It’s high time that we
consider withdrawing support.”
There was a long silence. “He’s a young guy,” I
protested. “And we’ve done it before. And it
helped.”
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 didn’t know him at
all, “I had never once exchanged a single word
with him.”
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 attendings.
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?
A Difference of Opinion
• Beautifully captures the seeming futility and the
uncertainty of modern medicine.
• Are we helping or hurting, rescuing or torturing?
A Difference of Opinion’s 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. I knew the man. I knew
his face was significant, but I didn’t 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 that’s how the story ends….
Two encroachments upon futility
• 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 cost…and if the treatments really don’t work,
the cost is minimal
The central paradox of futility
• Futile treatments are only deeply problematic
when they work
• Futile treatments that truly don’t work are not
particularly troubling
Key distinctions
• Futility as a valuable concept in communication
and shared decision making
vs.
• Futility as a mechanism to avoid communication
and shared decision making
Fine R. Chest. October 2009.
Copyright © 2009 by the American College of Chest Physicians
Published by American College of Chest Physicians