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HEALTH ETHICS TODAY
Volume 11, Number 1, February 2000
When Patients Demand Too Much
Alister Browne, PhD
Division of Health Care Ethics
University of British Columbia
Ethics Consultant, Vancouver General Hospital
Department of Philosophy, Langara College
The Sawatsky case leaves us with the question: When, if at all, can
health care providers refuse requests for treatment? In Sawatsky, the
question applied to resuscitation. But it equally applies to requests
for alternative/complementary treatments, exotic treatments (such as
extra corporeal membrane oxygenation), and ordinary treatments requested
in extraordinary circumstances (such as tube feeding for a patient
in a persistent vegetative state).
Futility
The most common way of refusing requests for treatment is by saying
that the treatment is futile3. To say "The treatment is
futile" sounds like a hard, cold, scientific fact, and is an effective
way of turning aside requests for treatment. But it is also a dishonest
way.
To say that treatment is futile is to say either that it is impossible
or unlikely to achieve its therapeutic goal, or that there is something
problematic about the goal. But judging treatment futile in any of
these ways is never, by itself, a justification for saying "No." Treatment
which is futile in any of the above senses may have psychological benefits
for the patient or family, or (if the treatment is merely unlikely
to succeed) may actually succeed. Why should such treatments be denied?
We only have a justification for refusing treatment, if the judgement
of futility is conjoined either with the judgement that it is either
excessively costly or puts the patient at risk.
It thus emerges that to refuse treatment on the ground of futility
is either not to justify the refusal at all, or to pass off a value-laden
judgement (the treatment is not worth the cost, or not worthwhile for
the patient) as a value-free one. It thus seems preferable to abandon
the concept of futility in favour of the concepts that actually do
the work of justification: cost and harm to the patient4.
Cost
It is generally agreed that patients can be refused treatment for
reasons of cost. What treatments may be denied under this head is a
nice question, but that some may be is undeniable in principle2.
There is, however, an unresolved problem about who can do the refusing.
Conventional wisdom has it that clinicians cannot. Clinicians owe
patients their undivided loyalty. Cost cutting at the bedside would
also guarantee an inequitable distribution of resources, as some will
deliver what others would withhold. The standard recommendation is
that clinicians should ask for everything that is potentially beneficial
for their patients and it is up to others to say "No." In particular,
since it is society's money, society should, in Oregon-like fashion,
undertake a priority setting exercise to develop rules of rationing
which would be binding on health care providers. This would do something
to ensure an equitable distribution of treatment. It will also enable
health care providers to look their patients in the eye and say that,
within the bounds allowed them, they are doing everything they can.
The problem is what to do until we have societally sanctioned rules
of rationing. If costs are to be contained, someone must act as gatekeepers.
If clinicians cannot, who can? No answer comes to mind, and costs escalate.
Harm to Patient
Treatment may be requested by the family or the patient. The family
may request it because they have some reason to think that the patient
would have wanted the treatment (which is called a "substituted judgement").
Or they may request it because they hold that any reasonable person
in that position would want it (which is called a "best interest judgement").
Or the family may request the treatment just because they think it
best, where there is no pretense of this being a substituted judgement
or meeting the best interest standard.
If the family requests treatment just because they think it best,
but the health care professionals deem this, on balance, harmful to
the patient, health care providers should say "No." Health care providers
have a prima facie obligation to do what they consider to be in the
best interest of the patient, and this obligation cannot be cancelled
by the wishes of a family, unbacked by a substituted judgement or a
contrary best interest judgement.
If the family requests the treatment in question on the basis of
a best interest judgement, that must be taken more seriously. Families
can judge what the reasonable person in the patient's position would
want as well as can health care professionals. But health care providers
need reasons to agree with best interest judgements before they act
on them. Thus, again they should say "No," but this should be followed
rapidly by a review in the form of a second opinion or ethics consultation.
There are two schools of thought on what to do if the family requests
the treatment on the basis of a substituted judgement, or if it is
the patient that makes the request. One has it that health care providers
have a strict obligation not to harm their patients, and thus should
systematically refuse1. The second holds that once health
care providers inform patients about the medical aspects as well as
they can, treatment decisions should be made by patients. When the
dispute is about what risks are worth what benefits, patients are the
experts, and hence health care providers should systematically subordinate
their judgements to those of their patients5.
Both schools are mistaken. It is implausible to hold that health
care providers should never subordinate their on balance judgements
to those of their patients. It is important for individuals to lay
out their existences as they see fit, and sometimes they need the help
of health care providers to do this. We expect investment brokers,
divorce lawyers, tailors, and climbing guides to sometimes subordinate
their judgement to those of their clients. Health care providers should
not hold themselves to a higher standard.
It is equally implausible, however, to say that health care providers
should always put themselves at the disposal of their patients. Whenever
health care providers act against their better judgement, they must
be prepared to justify their complicity if things turn out badly for
the patient, and this will be difficult to do if the harm is certain
and substantial.
Excluding the "never" or "always" positions leaves health care providers
in the difficult position of exercising judgement when faced with requests
for treatment they deem on balance harmful. This is an uncomfortable
situation, but once health care providers cannot rely on habitual action
or rules, there is no escaping it.
Conclusion
The problem of refusing requests for treatment will be with us for
the foreseeable future. We are not entirely directionless when faced
with it, but situations will occur where one's moral compass must spin
on its gimbals. Whether better can be done remains to be seen, and
the challenge of the court in Sawatsky. ?
References
- Edmund D. Pellegrino, Patient Autonomy and the Physician's Ethics,
Annals Royal College of Physicians & Surgeons, Vol. 27, No. 3 (April
1994), pp. 171-173.
- Edmund D. Pellegrino, Rationing Health Care: The
Ethics of Medical Gatekeeping, Journal of Contemporary
Health Law and Policy, Vol. 2, No. 23 (1986), pp. 23-
45.
- L.J. Schneiderman, M.S. Jecker,
A.R. Jonsen, Medical Futility:
Its Meaning and Ethical Implications,
Annals of Internal Medicine,
Vol. 112, No. 12 (15 June 1990),
pp. 949-954.
- R.D.
Truog, A.S.
Brett, J.
Frader, The
Problem With
Futility,
New England
Journal of
Medicine,
Vol. 326,
No. 23 (June
4, 1992),
pp. 1560-1564.
- Robert
S.
Veatch,
Carol
M.
Spicer,
Medically
Futile
Care:
The
Role
of
the
Physician
in
Setting
Limits,
American
Journal
of
Law & Medicine,
Vol.
XVIII,
Nos.
1 & 2
(1992),
pp.
15-36.
Contents
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