BOOKS ON MEDICAL FUTILITY
Copyright
© 2018 by James Leonard Park
Selected
and reviewed by James Park.
When
something appear in red,
this is the opinion of the reviewer.
1. Lawrence J. Schneiderman & Nancy Jecker
Wrong Medicine:
Doctors, Patients, and Futile Treatment
(Baltimore, MD: Johns Hopkins University Press, 1995)
(ISBN: 0-8018-5036-3; hardcover)
(Library of Congress call number: R724.S3936 1995)
This book raises a new
issue in medical care:
Sometimes patients receive medical treatment because it is possible
rather than because it offers a real hope of cure.
For some patients, at least, we have passed
from the era of too little medical care
to the era of too much
medical treatment.
Some foolish reasons doctors continue to treat
hopeless patients:
It is automatic to attempt the next treatment when one treatment fails.
The physician does not want to admit 'defeat'.
The physician does not want to 'abandon' the patient.
The doctors have an emotional investment in this particular patient.
People can always point to miracle-cures that worked for others.
A neglectful relatives now insists "do everything".
A doctor who was unlucky in a difficult operation (or who made a
mistake)
wants that to be forgotten because the patient ultimately recovered.
The family is not ready to let go, especially of a dying child.
Fears of unlikely lawsuits for malpractice.
Fear of adverse media attention if the patient dies.
If a procedure is covered by insurance, it should be done.
Family members are making a scene.
The patient has no proxy or advance directive—no one to say "enough!"
Health-care workers do not know
that the law does not require useless
treatments.
Doctors do not know the probabilities of success of each treatment.
Patient autonomy does not mean
that the patient can demand anything he
or she wants.
Doctors are not aware of the costs of the treatments they order.
Medical futility is not the same as rationing
medical resources.
Futility means that the treatment does no good for the patient.
Rationing means that it costs too much to use this treatment
in light of the likely outcome.
The same medical resources would do more good
if they were used for
other patients.
Rationing will always be necessary when it comes to organ transplants:
There will always be more
patients in need
than there are available
organs for transplant.
It makes good sense to shift medical care to earlier in any patient's
life,
when it can do more good and provide more years of meaningful life.
Futility focuses only on one patient:
Will the proposed treatment benefit this patient?
Rationing asks about the broader society:
Given that health-care dollars are limited, how should we spend them?
The fear of malpractice lawsuits leads to
'defensive medicine',
in which unnecessary tests are ordered to impress a jury of laypeople
rather than because the tests will benefit the patient.
These mostly-goundless worries leads to billions of dollars wasted
on medical documentation
rather than health care.
Good medical care would focus on what the patient needs,
not what a clever lawyer might say to a jury of laypeople
about the latest medical test or gizmo that was not used.
The mass media and television dramas
give
a false impression of how medicine ought to be practiced.
When a treatment gets into the news or into a hospital drama,
patients ask for it even if it would have no value for them.
And they threaten to sue if they are not treated "as seen on TV".
The lawyers for the hospital imagine
remote possibilities.
In actually fact, no one has successfully sued
for premature
termination of treatment.
Doctors must deal with the probabilities
that a certain
treatment will be successful or not.
In one case, the hospital did not want to disconnect a brain-dead baby
because they worried that they would be blamed in the media
with killing welfare babies to save money.
The hospital wanted to avoid
adverse publicity,
so it was willing to keep the tiny body on life-supports indefinitely.
"Pulling the plug" is not murder or suicide.
Lawyers know this.
Courts have always agreed.
But some doctors are not certain.
And the general public has not given the issue much thought.
But better education for all will overcome the legal myths.
Death comes as the result of
the underlying disease or condition;
it was not caused by
disconnecting the life-support systems.
And terminal illness need not be officially declared
in order to refuse or discontinue any medical treatment.
Ordinary as well as extraordinary treatments
may be refused.
The line between these two keeps moving.
And even the Roman Catholic Church has abandoned such thinking.
Another common error in popular thought is that
once a machine has been connected,
it can never be disconnected.
Withdrawing treatment
has the same moral and legal standing as never
starting.
Thus, when the situation is uncertain,
it is always best to try
the
life-support system.
If it does not work, it can be terminated just as easily.
But never starting out of
fear of not being able to stop
could lead to serious harm or even death for the patient.
Emotionally it might feel different, but legally and morally,
we can always discontinue
treatment that does not work.
When food and water are provided thru tubes,
this has always been included as forms of medical treatment,
which can also be discontinued if they do no good.
Terminating life-supports does not require a court order.
(Again, some right-to-die cases in the news
sometimes give the false
impression
that the courts will always be involved in life-ending decisions.)
Some health-care workers do not know
that advance
directives are legal documents:
Decisions based on these documents and the decisions of the proxies
have the full force of law behind them.
Patients and their families sometimes demand medical
treatments
that really are futile or useless in the sense that there is
no chance that these
treatments will return the patient to normal life.
Some lesser goals of medical care are sometimes meaningful.
In medical care, what is possible and what is impossible
might need to be explained to laypeople,
who usually lack technical knowledge about treatments and results.
And laypeople sometimes expect or demand a miracle.
They are usually not prepared to accept death as the likely
outcome.
Patients are permitted, even encouraged,
to have their own religious beliefs and practices.
They can pray as much as they please for a cure.
Most hospitals
employ chaplains
to take care of the religious needs of the patients and their families.
But the medical care
itself should be based on scientific evidence.
Better education of the public and common sense
should eventually reduce the amount of futile care now being given.
And better coordination among doctors
who specialized in various
diseases or organs
could lead to wiser medical decisions for the whole
patient.
Each specialist has been mainly concerned
with keeping his or her part of the body going.
But who is paying attention to the over-all health of the patient?
What is the point of giving expensive treatment for one organ-system
when the whole body has little chance of surviving for another year
even if all efforts are successful?
For example, there is no point in removing a tumor
if the patient is permanently unconscious.
Such an operation can successfully remove the cancer,
but what benefit does it provide for the patient?
The over-all benefits and burdens on the patient should be weighed
in making each medical decision.
Which physician should be in charge of the whole patient's
condition?
Patients should also be told about the future
quality of their lives
even if all of the treatments go perfectly.
The outcome of medical treatment
should not be stated simply in terms of survival or non-survival.
What will the patient's life be in the following months and years?
And what burdens will the patient bear for the rest of his or
her life?
For example, will the patient be able to return to work?
Will the patient be dependent on some medical devise indefinitely?
Wrong
Medicine: Doctors, Patients, and Futile Treatment
does not answer most of the
medical dilemmas it raises.
But it is the beginning of a long
discussion of medical futility.
It will take decades before the
general public
notices that some medical treatments are useless in specific cases.
Doctors must lead the way:
Instead of focusing just on
keeping the body 'alive',
they need to be able to ask about
the quality of
the life prolonged.
Should it be counted as a success
if the patient will spend the rest of his or her life in a medical
institution?
Let the
discussion begin
for all persons involved in
making medical decisions.
A medical futility database
could
provide detailed information
about the outcomes for similar
patients who tried each
treatment.
2. Susan
B. Rubin
When Doctors Say No:
The Battleground of Medical
Futility
(Bloomington,
IN: Indiana University Press: www.indiana.edu/~iupress,
1998) 191 pages
(ISBN: 0-253-33463-2; hardcover)
(Library of Congress call number: R725.5.R83 1998)
(Medical call number: W50R896w 1998)
This book is a
sustained attack on
the concept and practice
of declaring medical futility and therefore discontinuing treatment.
The author is trained in medical ethics
and has worked as an ethical consultant.
She has read the literature on medical futility
and finds that no consistent position or philosophy had yet emerged.
Different doctors were coming to different
conclusions.
Sometimes the judgment of 'futility' was based on non-scientific
factors.
For example, how much should we treat an alcoholic,
seeing that the self-destructive behavior is likely to continue?
Even if no patient has ever recovered because of a
certain treatment,
should it still be tried?
When asked, patients and their families mention
factors
the doctor would never have considered in any way.
For example, they have religious beliefs about the proper time to die.
They want to postpone death until a relative arrives from a distant
city.
As of the writing of this book,
there was no systematic way to decide
when a proposed course of treatment is futile.
And there are many different meanings of "futile".
Doctors sometimes consult ethics committees,
but usually they decide on the basis of medical knowledge
whether a certain treatment will work or not.
This book
takes the opposite position
from most books on medical futility.
This reviewer believes that the author began
with a bias against any declaration of medical futility.
But such thinking is a good corrective
for those positions that would 'pull the plug' too soon.
In one case the
family wanted to sustain an infant in PVS,
who would never think or feel.
Should these parents be sustained in a choice
that would not be taken by most people?
Their infant would never become a person.
They could take care of it in a bed at home,
but they would need additional medical care
whenever some disease developed.
But what would
happen to this individual in PVS
when the parents die?
Would they expect the state to care for an adult body in
PVS?
These parents probably did not think that far ahead.
They merely wanted to 'love' their baby,
even if it would never respond to anything they did.
This case illustrates a larger issue:
When it comes to 'letting go' of a loved one,
some families cannot be rational.
They will insist on supportive care
even when there is no hope.
Sometimes religious views figure in such decisions.
For example, the family members might be praying for a miracle.
And they want to keep using the life-support systems
until God has an opportunity to hear their prayers
and cause a cure that medical science could never explain.
People have a right to such religious beliefs,
but in the opinion of this reviewer, they do not have a right
to use public funds to
support a hopeless case.
A Medical Futility Monitor would make decisions
based on science.
But irrational beliefs could be taken into account
as long as they made little difference in the care-plan.
For example, one
Asian woman believed
that her family would be cursed for 5 generations
if she died in a certain month.
A few more days on life-support was a great relief to her.
And the additional cost to
taxpayers was small.
This reviewer hopes that a Medical Futility Monitor
could take such small variations into account,
even when the beliefs have no scientific basis.
However, if religious beliefs would lead
to keeping a hopeless patient 'alive' indefinitely, at public expense,
then the MFM must decide in
the public interest, based on science.
This book should be read by anyone
thinking of
becoming a Medical Futility Monitor.
The overwhelming bias (based on evidence)
would be toward less
treatment at the end of life.
But a Medical
Futility Monitor should also be empowered
to decide to begin or continue medical treatments
if the facts suggest some reasonable hope of recovery.
Sometimes the treating physician will give up too soon.
He or she might falsely believe that further treatment would be
useless.
But the MFM would have access to a large body of medical history
and would therefore be better able to judge the likely
outcomes.
The treating physician might be depending
mainly on his or her own
experience with similar cases.
Also, consulting with a doctor who specialized in
terminal-care issues
should reassure the family that more than one well-trained mind
has been thinking about the patient in question.
This book illustrates the fact
that there are lots
of openings for error in the practice of medicine.
And allowing anyone to claim medical futility
introduces a whole new area for possible mistakes.
'Pulling the plug' could be a mistake.
But it might also be a mistake to keep the patient
attached to life-supports too long.
An independent, unbiased Medical Futility Monitor
should be able to help all decision-makers
to reach wiser medical decisions.
Susan Rubin
believes that 'medical futility' has so many problems
that it should never
be allowed as a
reason for discontinuing treatment.
This seems similar to the position
taken by some people
that physicians should never
be permitted to help their patients to die
—because there will be some mistakes.
Sometimes the
values of the doctor
differ from the values of the patient—and
the family.
What the doctor regards as futile treatment
—because
it will only provide a few more days of life—
might not correspond with the values of the patient and the family
—which
might regard a few more days of life as extremely
valuable.
In such cases,
it should not be difficult to reach a compromise
that does not violate the values of either side to a large degree.
Real conflicts concerning futile care occur
when years of
meaningless existence are being discussed.
When the family will never
agree to 'pull the plug',
the doctor should have the power to say "no".
But Susan Rubin seems to argue
that the doctor should never have
the right to say "no"
to a meaningless and empty gesture
of 'medical care'.
Rubin raises doubts about the scientific basis of
medical practice.
Sometimes doctors recommend discontinuing treatment
citing the evidence gathered about any particular procedure.
But time and again, doctors have been wrong
about their diagnosis and prognosis.
An ethics committee would be one way to gather diverse opinions
from people who understand the medical facts and options available.
Rubin calls for greater dialogue about
medical decisions.
Greater
objectivity will be realized when we have
a national or international data-base
for most medical treatments and their outcomes.
This data-base must be founded on scientific evidence.
The scientific method is self-correcting:
When something was wrong in the first data-base,
it will be corrected by further research concerning that procedure.
Patients should be presented with all the benefits and burdens
of each medical procedure that might be tried.
This would take the claim of medical futility
out of the hands of the individual physician.
Seeking additional professional opinions should be standard practice.
And a Medical Futility Monitor might be the ultimate expert
on what works and what does not work.
Such changes would make the process more public and more
scientific.
Rubin's book has
raised useful doubts
about the process of making medical decisions.
Such decisions should not be made by
one doctor alone.
One doctor should not have complete
power
to say "no" to medical treatments.
revised
4-3-2009; 7-1-2009; 8-12-2010; 4-4-2018;
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