Transcript patient and family - Idaho Nurses Association

Quarterly Ethics Grand Rounds
When a Family Says,
“Do Everything”
And We Believe
That The Requested Treatment
Is Futile
Idaho Nurses Association
November 6, 2015
Led by R. Alex Chamberlain
St. Luke’s Treasure Valley Coordinator of Clinical Ethics
History
• The Latin word futilis translates “vain or worthless”
• Writings from the Hippocratic corpus
 “Refuse to treat those who are overmastered by their disease,
realizing that in such cases medicine is powerless.”
 “Whenever the illness is too strong for the available remedies, the
physician surely must not expect that it can be overcome by medicine
… To attempt futile treatment is to display an ignorance that is allied to
madness”
 “Whenever there a man suffers an illness that is too strong for the
means at the disposal of medicine he surely must not expect that it
can be overcome by medicine.”
 “A life with preoccupation with illness and neglect of work is not worth
living.”
Defining Futility
“Leaky, hence untrustworthy,
vain, failing of the desired end
through intrinsic defect.”
Greek myth of the daughters
of Danaus who, following the
murder of their husbands,
were condemned to use jugs
that leaked. In modern
times, one author reviewed
the sentence and reduced it
to laying down asphalt and
immediately tearing it up due
to extenuating circumstances.
Plato and Quality of Life
Asclepius did not attempt to prescribe regimens
for those whose bodies were riddled with
disease, so that by drawing off a little here and
pouring in a little there, he could make their life
a prolonged misery…he did not think he should
treat someone who could not live a normal life,
since such a person would profit neither himself
nor his city.
Ironically, the patient rights movement began
with cases that alleged physician overtreatment:
Nancy Cruzan and Karen Ann Quinlan.
But with the case of Helen Wanglie courts ruled
that patients and their surrogates could not only
refuse treatment but demand treatment that
offered no reasonable prospect of medical
benefit.
Patient Rights
• A patient has strong negative rights, and can
expect to be respected when they say “You
shall not touch me in this way.” They have an
unlimited right to be left alone.
• A patient has limited positive rights, as in
demanding, “You shall touch me in this way.”
A patient does not have an unfettered right to
compel treatment.
Recent Developments
• First generation: define futility (1950’s to 70’s)
• Second generation: develop laws and
processes that resolve conflicts (1980’s to
2000)
• Third generation: Focus on relationships and
trust building even when we are “stuck” (2000
to present)
The first generation: Identify terms
• Attempts to define futility:
 Probability: in the last 100 cases a medical treatment has
been useless (a statistical benchmark)
 Physiological: a given treatment doesn’t achieve the
outcome for which it was designed, or it only achieves a
temporary benefit
 Length of life: regardless of treatments offered the patient
will die within a certain period of time
 Quality of life: a person will remain unconscious, or
remain dependent on intensive medical care
Physiological Futility
Futility as a Slippery Concept
• Does it mean “Will not work”? From the medical
side, will a treatment accomplish the
physiological goal for which it is designed?
• Or, does it mean “Not worth doing”? Will it
achieve a level of success that meets the goals
and fulfills the values of stakeholders?
• And, even if goals are decided upon, do all
decision makers agree on how likely it is that the
goals will be achieved, and whether a particular
degree of possibility is acceptable?
Illustrative Case
• An 84 year old woman comes in with a intracranial bleed,
as a previously unknown aneurysm begins to leak. She
suffers from atrial fibrillation, hypertension, and COPD that
requires continuous home oxygen.
• The neurosurgeon checks a CT scan and tells her son, the
surrogate decision maker, that with her co-morbidities and
attendant fragile baseline health, surgery is not indicated.
He estimates that there is only a 5 % chance that with
surgery she will be restored to her previous level of health.
He states that she has a more than 50% chance of dying in
surgery or recovery, leaving an almost equal chance of
surviving with severe disability.
• If instead they treat her medically, she may stabilize on her
own…with a level of disability or recovery that is difficult to
predict. It is likely that she will die. The odds of the various
outcomes are similar to those with surgery.
Conflicts ensue due to areas of expertise and
the respective parties’ right to speak
authoritatively
• Clinicians will tend to draw from their training
to speak to the probability of outcomes and
the physiological responses that can be
expected.
• Patients and families will often speak to the
length of life that they hope for, and the
quality of life that they would find acceptable.
Quality of life is normally calculated by
the patient or surrogates, however…
Johns Hopkins’ policy on futility states,
Any treatment may be regarded as futile if it is
highly unlikely merely to preserve permanent
unconsciousness or persistent vegetative state or
require permanent hospitalization in an
intensive care unit.
Possibility and Probability
• A patient or family may focus upon what is
possible, where even a one in a hundred
chance of even a minimal recovery would be
“worth” pursuing treatment.
• Providers tend to base their practice upon
what is probable. If you hear hoofbeats…
Second Generation: Legislation and Policies
• Providers began seeking a way to ethically,
legally, and procedurally say “No” to some
requests because they felt those requests did
not fulfill the ethical principle of beneficence.
• If unable to arrive at a universally accepted
definition of futility, it was felt that we could
move forward if we had a societally agreed
upon process for resolution.
Texas Advance Directives Act
• This law parallels St. Luke’s and St. Al’s policies
on Non-Beneficial Treatment. When
physicians and families disagree about
whether to continue treatment the case is
referred to the Ethics Committee and if no
resolution is forthcoming a concerted effort is
extended toward placing the patient with an
different provider. If a diligent search provides
no such alternative, after a given waiting
period the providers can withdraw treatment.
Idaho statute not as comprehensive
In some cases, the provider may deem continued treatment
to be unethical or unconscionable if not "futile" as defined in
the statute, in which cases the provider's alternative is to
withdraw as the treating provider after making a good faith
effort to transfer care to another provider pursuant to I.C. §§
39-4513(2) or 18-611. That may be a viable alternative for a
physician or other individual health care provider, but it is
more difficult for a hospital or other health care facility. The
practical effect is that it is even more important for providers
and facility ethics committees to come to an agreement with
patients or surrogate decision makers concerning the
appropriate course of treatment or withdrawal thereof.
-Lee Stanger, Attorney
IDAHO STATUTE TITLE 39
HEALTH AND SAFETY
CHAPTER 45
THE MEDICAL CONSENT AND NATURAL DEATH ACT
The statute only permits the withdrawal or denial of
requested treatment if the treatment is futile. The statute
now defines "futile care" as a course of treatment:
• For a patient with a terminal condition, for whom, in
reasonable medical judgment, death is imminent
within hours or at most a few days whether or not the
medical treatment is provided and that in reasonable
medical judgment will not improve the patient's
condition; or
• The denial of which in reasonable medical judgment
will not result in or hasten the patient's death.
Factors leading to surrogate requests for
medically inappropriate treatment
• “Doing everything” is the most caring response
• Guilt, denial, or unrealistic expectations
• Inability to trust professionals to act in patient’s best
interests
• Religious or philosophical convictions that human life
is an absolute value worth preserving
• Economic considerations
• A sense of justice/entitlement
What looks like futility to some observers
Carries great symbolic significance
for others for those amid the battle
Futility in CPR
Not starting CPR may be a medical decision apart from
patient/surrogate input if:
• Death is clearly irreversible as in decapitation, rigor mortis and
mottling.
• Vital functions have deteriorated despite maximal therapy in cases
of sepsis, multi organ failure, newborns under 23 weeks gestation.
…otherwise, patient and family input is reasonable even when
returning to sinus rhythm appears unlikely.
However, stopping CPR once begun, is a medical decision regarding
the effectiveness of a particular intervention and informing family of
failure is more suitable than asking if we can stop.
Third generation: Relationship Focused
• This “problem” will not go away since emerging
technologies and increased health expectations
increase in the public the hope that even the most dire
situation can be turned around.
• Most disputes on “futility” cases are often about
communication breakdowns and erosion of trust
between the parties than they are about values
attached to medical opinions.
• Focus upon the interests and goals of the parties rather
than the positions.
• Generate a variety of options before settling on an
agreement. Try agree on a “plan” rather than a
“decision”
Reframing the Conversation
• Care conferences: there is a difference
between resisting a plan and refusing one.
• Avoid the term “futility” and instead use
language such as goals of treatment, patient
values, and proportionality of burdens and
benefits.
• Strive for consistency: consistent message,
continuity among providers, consistent
audience.
Additional conversation suggestions
• Avoid using the phrase “There is nothing more
we can do.”
• Discuss the goals of treatment, not the goals
of “care.” (Caring is never futile)
• Use the term “futile” only within full
sentences, such as “Futile in respect to which
goals, and whose goals are these?”
• Help people move toward a “good choice”
rather than the “right decision.”
When the conflict is protracted
• Ask ourselves if the patient is being harmed.
If so, consider asking the courts to appoint a
new surrogate. We may tolerate a patient not
being benefitted, but we should not acquiesce
to treatment that continues significant harm.
• An article in Chest (Burns and Truog 2007;
132(6) argues that one of the biggest
challenges to these extended battles is the
casualty count among staff.
Futility and Rationing
• Many believe that a treatment that is not futile still
should not be provided if the benefits are not
proportional to the costs. For example, treating a
person with Stage IV cancer with liver and brain
metastases with mechanical ventilation may not be
physiologically futile but would be considered by many
to be a poor use of resources.
• However, we should not conflate good stewardship of
society’s resources with the ethical problem of scarce
resources. Providing the Stage IV cancer patient with a
ventilator is ethically problematic if it denies this
treatment to a patient who is more likely to benefit
from it.
Uncertainty is OK
• When discussing prognosis and the likelihood of the
effectiveness of a certain intervention, we are often unable
to make an accurate prediction.
• Therefore, we should not
“oversell” our opinion, for
example, when discussing
whether a patient will
make a meaningful
neurological
recovery following CPR.
Possible “take aways”
1. Sometimes we tolerate discomfort in order to
preserve essential freedoms:
 Protect offensive speech
 Avoid torturing prisoners even if there is a
possibility of saving lives
 Continue to treat a patient who is overwhelmed
by disease to respect family wishes
2. A culture clash is often inevitable
and does not have to be “fixed”
3. If a solution to a conflict continues to be
elusive, we should not unilaterally override
surrogates without assuring them of access to
an impartial mechanism for resolving
differences. At St. Al’s and St. Luke’s all staff,
physicians, patients, and families have access
to the Ethics Committee and it consultants for
this process.
4. The first priority of the healthcare provider is
the survival of the provider. If we become
depleted we will lose our ability to fulfill our
calling, support our peers, and serve our
patients.
It is OK to be distraught when working with a
patient or family when we feel like we are
doing something to them rather than for
them.