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HEALTH ETHICS TODAY
Volume 11, Number 1, February 2000
Talking About "Futility" to Families of Dying Patients: The Scope and
Limits of Medical Judgment
Edward W. Keyserlingk, LLM, PhD
Director, Biomedical Ethics Unit
Faculty of Medicine, McGill University
Clinical Ethicist, Montreal General Hospital
Cases in which very ill or dying patients did not communicate treatment
preferences in advance (i.e., most patients), and who cannot now communicate
present treatment wishes at all or unambiguously (e.g., because intubated
and/or sedated), can be contentious and emotional. In most such cases
a number of factors contribute to eventual agreement between patients,
physicians, nurses and family members about treating or stopping treatment.
Among them are particularly the following: sensitive and skilled efforts
to interpret patient responses to information disclosed and questions
asked, sufficient time allowed to keep family members fully informed
on an ongoing basis, and the worsening or improvement of the patient's
condition. But if these moves are not made well, and sometimes even
when they are, the gulf between the players can be wide and persistent,
making an already tragic situation doubly so.
Physicians and nurses may feel strongly that family members insisting
upon treatment or the continuation of life support are unwilling or
unable to face the reality that their husband, wife or child is dying,
that continuation is futile, and that they are substituting their own
wishes for the wishes or best interests of the patient.
Family members on the other hand may conclude that treatment or continued
support is not in fact futile as far as they are concerned, that the
physicians and nurses are trying to kill the patient, that they are
in the best position to know what the patient wants, and that in any
case the decision is theirs alone. In some such cases recourse to court
orders or lawsuits may be hinted at or threatened should their wishes
be disregarded.
There are obviously many factors which can contribute to dissension,
and many which can help to avoid it. Given different personalities,
competing values, varieties of experience, diversity in medical conditions,
degrees of diagnostic and prognostic certainty and degrees of patient
alertness, no two cases will be exactly alike. Nevertheless, there
is one issue which arises most frequently in one form or another and
is particularly troubling. It involves the communication and decision-making
scope and limits of the treating team. Should physicians simply give
the patient and/or family the most objective picture they can of the
patient's condition and prognosis, lay out the medical options and
then refrain from making recommendations or expressing preferences?
Even if it were possible to exclude all subjectivity, which is dubious,
experience suggests that patients and families do not consider that
desirable. They typically want and value the experience, recommendations
and advice of doctors and nurses. They typically seek medical judgment
rather than viewing the physician as mere mechanic, especially in these
traumatic crises so novel for most patients and families. In my view,
however, families implicitly have at least five conditions they want
respected.
The first condition is that physicians reveal the reasons and values
behind their recommendation, invite dialogue and respect disagreement.
Fruitful discussions (and disagreements) about treatment options are
only possible if both sides know what value choices lie behind the
preferences, e.g. sanctity of life, quality of life, pain control,
particular understandings of futility, etc. Even in cases of indisputable
physiological medical futility, simply announcing to a family that "It
is futile to continue" will not always elicit agreement. At least initially
family members may not believe or understand this judgment, or may
simply want life-support or other forms of treatment to continue regardless.
Despite the various claims and definitions about futility in the
literature, including proposals to fashion scientifically verifiable
definitions based on success rates, the reality in the clinical context
is that there is no universal agreement within medicine or between
physicians, patients and families about when treatment has become futile.
There is inescapably an element of subjectivity in what anyone considers
to be futile, just as there was in the earlier "quality of life" terminology
and tests.
There will sometimes be legitimate non-medical reasons for continuing
life support a little while longer despite agreed-upon physiological
futility. A patient or family may not feel at liberty to raise such
concerns if futility and discontinuation are simply announced rather
than proposed. For example, waiting for a missing family member to
arrive before stopping life support can be a legitimate request. But
if that imposes additional suffering on the patient, only that patient
can consent to it, not the family.
The second condition is that care providers acknowledge that the
treatment decision will in the final analysis be made by the (competent)
patient, or failing that by the patient's family. This includes the
choice about the degree of shared decision-making that the patient
or family invites from the treating team. That principle, well established
in law and ethics, does not of course inhibit physicians from persuasion
short of duress, nor does it oblige them to act against their conscience.
In the event of intractable disagreement, both sides have a right to
seek additional advice and rulings, including from ethics committees
and courts.
The third condition to be respected is that families generally feel
they are in the best position to know or interpret a patient's treatment
wishes in these difficult circumstances, if expressed in advance or
in the present, given their long-standing relationship. While this
is generally a reasonable assumption, it is not always justified. Given
the reluctance to talk about death and dying within families, it is
unsurprising that many children and spouses have no idea what type
of care a now seriously ill family member in intensive care would want
in a variety of circumstances. Not infrequently family members have
been completely out of touch with the patient for some time and are
suddenly saddled with almost overwhelming choices for a virtual stranger.
In comparison, members of treating teams will often have had considerable
experience informing, questioning and interpreting the wishes of patients,
especially those who have been under their care for extended periods.
Fourthly, patients and families want to be informed and dealt with
honestly. That is not to say that everyone wants full and detailed
bad news, but how much they want is their choice, not the physician's.
An understanding of the psychology and desperation of patients and
families faced with life and death decisions is helpful. It is a cruel
and distorted form of respect for autonomy to ask whether a patient
or family would want CPR should the patient arrest, when it is well
established that there would be no benefit from it and that the patient
would be left in a worsened condition. In such circumstances, such
an offer may be seen by the family as an indication that the patient
is not, after all, beyond hope. If she is, why is the doctor asking
if they want CPR? And what family member would be comfortable rejecting
an offer of CPR for their loved one?
As evidence that these offers are not always sincere, doctors are
sometimes shocked and quickly backpedal if the answer is, "Yes, we
want CPR." A more honest approach when faced with indisputable physiological
futility is not to raise the matter of CPR at all since it is not a
viable option. Perhaps an even more respectful course, and an equally
honest one, would be to raise it and then explain why it is not a viable
option in these circumstances. Initiating such a dialogue not only
contributes to a fuller understanding on the family's part, but addresses
a concern which the family may have, either now or after the patient's
death, but would not otherwise feel free to raise.
The fifth and final condition involves ensuring to the extent possible
that physicians and family members hear the same wishes from the patient
at the same time. It is not infrequently the case that members of the
health care team have one interpretation of what a patient is indicating,
and family members another. This may be the result of their separate
interactions with the patient. If patients do not sense "permission" from
family members to be allowed to die, they may communicate that wish
only to the health care team.
Family members will normally be helpful to the treating team in understanding
and interpreting what a patient wants by being at the bedside along
with the doctors and nurses, whenever possible. Family members, who
hear or see first hand the patient clearly stating or in other ways
signaling that wish in response to sensitive questioning by a nurse
or physician, are thereby helped to come to terms with the patient's
imminent death. There is less danger that they will unconsciously substitute
their wishes and interests for those of the patient. Family members
may thus be less likely to feel and claim that the doctors are mistaken
or even lying about what the patient wants, on the basis that they
had never heard the patient express such a desire. ?
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