Decisions to Withdraw Life-Sustaining Treatment
A Moral Algorithm
Edmund D. Pellegrino, MD
The practical ethical question in the case of Reverend G is this: when,
if ever, and under which conditions, can his cardiac pacemaker be removed?
This is a specific instance of the more generic question of how vigorously
physicians are bound to preserve life in patients whose clinical state is
seriously deteriorating and if, and under which conditions, life support may
ethically be withheld or withdrawn from them. These are the most common ethical
questions confronting clinicians at the bedside today. Every clinician is
obliged to make these decisions in a morally defensible way. To do so requires
some understanding of the moral anatomy of ethical decisions. This article
undertakes to expose something of that anatomy as it is revealed in the case
of Reverend G.
There are at least 3 levels to any ethical decision: (1) at the most
fundamental level are the presuppositions about the value of human life; (2)
at the intermediate level, a theoretical structure for justifying ethical
decisions; and (3) at the practical level, a framework for actualizing the
first 2 levels in a concrete decision. Clinicians usually give most attention
to the practical decision, but all 3 levels influence their decisions. In
any given case, each level must be understood if we are to understand why
conflicts occur and how they might be resolved.
Fundamental Presuppositions
At the most fundamental and important level is the value we attach to
individual human life. This value may be interpreted as absolute, relative,
or instrumental. This is not the place to argue the merits of each position,
except to say that they are not morally equivalent. To describe each, therefore,
is not to attribute equal moral validity to each.
If the value of human life is taken to be absolute, then it has such
intrinsic value that it must be sustained at all costs. From this point of
view, Reverend G's pacemaker could not be withdrawn. However, if life has
only utilitarian value, then whenever Reverend G or his surrogates see no
instrumental value to its continuance, they would be justified in ending it.
They might argue that removing the pacemaker could be a positive moral obligation,
since to continue would impose "wrongful life" on the patient.
In my view, human life has enormous intrinsic value; therefore, we cannot
dispose of it at our will when it loses instrumental value. But in view of
our inevitable human finitude, under certain specific conditions, when there
is a disproportionate relationship between the burdens and the effectiveness
or benefits of treatment, life support may be withdrawn. This allows the natural
history of the disease to take its course. It removes the impediment to inevitable
death that futile treatments impose. However, intending the death of the patient
would never be licit.
Ethical Theory
At the second level of moral anatomy, we usually justify our ethical
decisions in terms of some established ethical theory that builds on our fundamental
presuppositions. Here, we can only mention some common examples like the theories
of utility, deontology, virtue, casuistry, prima facie principles, and the
like. The way fundamental presuppositions are justified and then used in an
actual case will vary with the theory we use at this middle level. This is
not the place to argue for or against any particular theory. To do so would
require a detailed critique of medical ethics. I simply want to note their
relevance to clinical decisions. In this analysis, I use a deontological perspective,
but the same framework could be used with other theories.
A General Framework for Decisions to Withhold or Withdraw Treatment
There are 4 practical ethical questions that must be answered in any
clinical decision to withhold or withdraw life-sustaining treatment: (1) Who
decides? (2) By what criteria? (3) How are conflicts among decision makers
resolved? (4) How is conflict prevented? This approach to an ethical decision
is analogous to the systematic process we follow in analyzing any clinical
problem.
Who Decides?
With certain exceptions, to be mentioned below, patients with the capacity
to make the decision in question are the morally valid decision makers. Patients
with the capacity to give authentic authorization have both moral and legal
authority that, within certain boundaries, overrules the wishes of the physician,
the patient's surrogate, or family. Whenever the patient possesses decision-making
capacity, the patient can also change his or her own living will or durable
power of attorney at any time.
Decision-making capacity depends on ability to communicate, to comprehend
the nature and gravity of the decision, to make a reasoned judgment based
on one's own values, to persist in that judgment, and to do so in a manner
consistent with previously expressed values and beliefs. A reasoned decision
is one that follows logically from the patient's presuppositions about what
is right or good, even if the physician finds those presuppositions unconvincing.
A patient's decision perceived as "wrong" by the physician is not by that
fact either incompetent or irrational.
Decision-making capacity is located on a continuum that varies directly
with the gravity of the decision. A greater capacity is required to consent
to surgery, for example, than to venipuncture. When the patient lacks decision-making
capacity, moral authority is transferred to a valid surrogate, a living will,
or a durable power of attorney.
To be a valid surrogate or durable power of attorney, one must be competent
to make decisions, free of obvious financial or emotional conflict of interest,
and must give convincing evidence of knowledge of the patient's values. These
determinations are the clinician's responsibility within reasonable limits
of time, availability of surrogates, and evidence of knowledge of the patient's
values. Obviously, the extent and depth of this investigation will vary with
the time available and the urgency of the decision. The purpose is to be sure
that the surrogate's knowledge is of sufficiently recent date and is not contradicted
by someone who may have more recent or detailed knowledge.
The moral authority of the patient, the patient's surrogate, or a living
will is not absolute. It is limited under the following conditions: (1) when
the patient's decision produces identifiable, serious, probable harm to identifiable
others; (2) when the physician is asked to violate his or her personal and
professional ethical integrity; (3) when the patient deliberately attempts
to injure himself or herself; or (4) when the treatment requested is clinically
futile or contraindicated. The physician is not under obligation to comply
with a request, however autonomous, that violates the physician's own beliefs
or his or her conception of the best standard of care. When this occurs, the
physician must inform the patient or the patient's surrogate and ask to be
relieved of responsibility by transfer of care to another physician.
By What Criteria?
The central criterion for withdrawal of treatment is clinical futility.
In the past, futility was determined unilaterally by the physician. Today,
futility is much debated. Some think it is too vague or too medically oriented.
Some ask for its drastic reinterpretation; others want its restitution as
primarily a medical or statistical judgment. Those debates notwithstanding,
the concept of futility cannot be avoided in real situations. It is implicit
in any decision to start or stop treatment. In this analysis, I define futility specifically as the relationship among effectiveness,
benefit, and burden of the treatment in question. This is not a quantitative
relationship, but a judicious balancing of each factor against the others.
Effectiveness is an assessment of the capacity
of the procedure to alter the natural history of the disease. In some detectable
way, effectiveness is an objective determination within the province of clinical
knowledge of the physician. It must be based on as much evidence, outcome
studies, and prognoses as possible. Benefit, on the
other hand, is determined by the patient's assessment of the value or desirability
of the treatment's result. Benefit is the province of the patient, helped
by factual input from the physician. Benefits cover a wide range of things
desired or sought by the patient. Burdens are the
cost, discomfort, pain, and inconvenience, of the treatment in question; it
includes his or her quality of life assessment. "Costs" are both subjective
and objective, financial and nonfinancial, and are, therefore, determined
by both the physician and the patient or surrogate acting together.
Age, quality of life, and economics are criteria that deserve separate
consideration and explicit discussion. Implicitly or explicitly, they may
influence the physician's, health maintenance organization's, or family's
assessment of futility in complex ways. Each of these 3 criteria is a morally
valid reason for withholding or withdrawing treatment if invoked by the patient.
However, they are morally acceptable with comatose or otherwise incompetent
patients only if expressed in a valid living will or invoked either by a valid
durable power of attorney or by valid surrogates who can provide some evidence
of the patient's wishes. Physicians may not unilaterally decide the quality
of another person's life, use age as a sole criterion, or invoke economics
without reference to the question of futility.
Conflict
Two other questions complete the framework: how are conflicts to be
resolved and how are they prevented? Since there was no conflict among the
decision makers in Reverend G's case, those questions will not be addressed
in any detail here. In any case, they are too complex for simplified treatment.
Suffice it to say that conflicts may be resolved by negotiation, ethics consultation,
pastoral or psychological counseling, or (rarely) by appointment of a legal
guardian or issuance of a court order. Conflict prevention depends on diagnosis
of the reason for the conflict; anticipation of dilemmas; frequent meetings
between families, patients, and all the major professionals involved in the
decision; setting goals and time lines; and defining futility together as
well as preparing living wills or durable power cooperatively with the physician.
Application of the Framework to the Case of Reverend G
The facts in the case of Reverend G indicate that he did not have the
capacity to make an authentic authorizing decision. He executed a living will,
but its contents were not known. If the living will had addressed the situation
of a pacemaker, then the patient's wishes as expressed in the living will
would carry the greatest moral weight. Thus, if he had anticipated the situation
in which he actually finds himself at the time of the decision, then the pacemaker
could have been turned off.
In the absence of such a specific request, the valid decision makers
are the patient's wife and children, none of whom, it would appear, has been
designated as a durable power of attorney for health care. The family members
do not seem to be in disagreement, however. Nor is there evidence of any obvious
conflict of interest between or among them. Clearly, much more would need
to be known to make this judgment with confidence. But based on the facts
given, the wife and children qualify as morally valid decision makers. Even
if they had no knowledge of the patient's wishes, they could still make a
valid decision using the "best interests" standard, ie, what they as "reasonable
persons" would consider to be in the patient's best interests. As to the living
will, we are not privy to its contents. We may assume, lacking evidence to
the contrary, that the family in good conscience believed a request to withdraw
the pacemaker would be consistent with the patient's wishes, however expressed.
The next question is whether the family's request for discontinuance
of the pacemaker is morally defensible. That request could be morally valid
if a state of futility could be established. Is the use of the pacemaker futile
in this patient? From the point of view of effectiveness, the pacemaker cannot
alter the eventual fatal outcome of this patient's underlying disorder that
seemingly involves the brain. The pacemaker is effective only to reverse or
prevent the arrhythmia. It will not cure the underlying myocardial pathology.
By preventing arrhythmia from becoming fatal, the pacemaker, however, prolongs
life.
As far as benefits go, we do not have access to the patient's evaluation
of whether he thinks the pacemaker meets some need or provides some good he
finds personally important. If we are to believe his valid surrogates, based
on his past values, the patient would not see any benefits in prolonging his
life in its current state. The surrogates make reference to the patient's
"quality of life." Quality of life per se would not be valid in a nonresponsive
patient. If it is clear from his prior instructions to his surrogates or from
his living will that this quality of life would not be acceptable to him,
then quality of life would carry weight in the futility relationship.
As far as the patient is concerned, the direct "burdens" of continuance
of the pacemaker are not great. However, the pacemaker does present definite
indirect burdens. These include: (1) the prolongation of a life of suffering,
without hope of relief; (2) interference with death that would occur in the
natural course of events without the pacemaker; (3) the expense and expenditures
of funds, resources, and facilities; and (4) the emotional burdens that a
prolonged illness would have on family and friends. The absence of any benefit
plus the summation of burdens clearly outweigh the limited effectiveness of
the pacemaker. Its use would be judged futile, and its removal could be justified.
Discontinuance of the pacemaker could be ethically permissible provided
the intention was to remove a futile treatment and, thus, to allow the natural
history of the illness to proceed unimpeded. The condition of valid double
effect would be fulfilled, ie, the act would be morally neutral; the intention
would be good (ie, to remove ineffective treatment); the good effect would
flow from the removal of the impediment to an inevitable death, not from the
death of the patient; there would be a proportionate reason to take the action;
and no other action would achieve the same end. If, however, the surrogates'
or medical attendants' intentions were to hasten death intentionally or to
end a life they unilaterally judged to be of "no quality," then removal of
the pacemaker would not be morally licit. If the reasoning is correct thus
far, it would be morally indicated to write a do not resuscitate order. Obviously,
if the patient survived removal of the pacemaker, he should receive comfort
care. But there would be no obligation to escalate care or to use highly sophisticated
or heroic measures since the fact of futility has been clearly established.
The moral algorithm used to analyze Reverend G's case is intended simply
as a way to organize ethical decision making. It should not be used in a legalistic
or mechanical way. A legalistic or mechanistic application would slight or
ignore the fundamental ethical and human issues that define the uniqueness
of this case. The moral weight of the algorithm derives from the validity
of its presuppositions and its mode of ethical justification.
Author/Article Information
Author Affiliation: Center for Clinical Bioethics,
Georgetown University Medical Center, Washington, DC.
Corresponding Author: Edmund D. Pellegrino,
MD, Center for Clinical Bioethics, 4000 Reservoir Rd, NW, D-238, Georgetown
University Medical Center, Washington, DC 20007.
Controversies Section Editor: Phil B. Fontanarosa,
MD, Deputy Editor.
