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The inner workings of an ethics committee: latest battle over Jehovah's Witnesses.

The Inner Workings of an Ethics Committee: Latest Battle over Jehovah's Witnesses

Is there anything new in the ongoing saga of Jehovah's Witness patients who seek to conform to the dictates of their religion, which prohibits transfusion of whole blood or blood products (including autologous transfusions, removal and replacement of the patient's own blood)? I was asked this question just as one of the ethics committees on which I serve had begun work on a new policy at the request of the hospital administration. At that time, more than two years ago, the only thing that struck me as "new" was the widening gap between the well established legal and moral right of adult patients to decide on their own medical treatment and the determination of some physicians to coerce Jehovah's Witness patients into receiving a therapy unacceptable to them. What appeared new was not the gap itself, but its widening.

But as I was to learn in the two years that our ethics committee spent debating and revising a policy for Jehovah's Witness patients, there was indeed a new issue, one that has only recently made an appearance in articles in the medical and bioethics literature. That issue is the right of a pregnant Jehovah's Witness to refuse a blood transfusion, resulting in the likelihood of her death and that of the fetus. [1]

Our ethics committee was sharply divided on the question of whether pregnant Jehovah's Witnesses should be treated just like other adult patients with decisional capacity, or whether the existence of the fetus introduced a set of competing rights or interests. The first draft of a policy was submitted to the committee for discussion in May 1985. The final version was approved by the Medical Board of the hospital in June 1987. Here is the evolution of the policy from start to finish.

The Beginning

Our involvement with the issue began in February 1985, when a hospital administrator in charge of risk management contacted the chairman of the Institutional Ethics Committee (IEC) about a problem that had arisen with a Jehovah's Witness patient. The patient, an emancipated minor, was admitted to the hospital and refused any transfusions that might be judged necessary in the course of surgery. The patient was alert and lucid, and since the surgery was not an emergency, there was time to negotiate consent. Present in the hospital were the patient's parents, both Jehovah's Witnesses, who were seeking to influence their son not to consent to a transfusion even if needed to save his life. The attending physician was uncertain how to proceed. Aware that judges routinely override parental refusal to consent to blood transfusion for minor children, the physician wondered whether it was appropriate to seek a court order. But noting that this patient was an emancipated minor, the physician recognized the patient's legal standing to decide for himself.

The attending physician contacted the hospital's risk manager for advice on how to proceed. The case was complicated further by the anesthesiologist's unwillingness to administer anesthesia under these circumstances, and by the involvement of the director of the hospital's blood bank, who has the responsibility to supply blood for patients about to undergo surgery. While these several concerned parties were deliberating about what to do, the attending physician seized an opportunity to have a thorough discussion with the patient when his parents were not present. The patient agreed to sign a consent form. In what was undoubtedly the best outcome, the surgery was performed without the need for a blood transfusion. Following this trying episode, the hospital's risk manager requested that the IEC review the existing guidelines and, if necessary, draft a new hospital policy.

Presentations addressing the ethical and legal issues were made at the March meeting by Nancy Dubler, a bioethicist/attorney who serves on the committee, and by myself. I informed the committee that Jehovah's Witnesses derive their prohibition against blood transfusion from biblical texts. The New Testament (Acts 15:19-21) restates the Old Testament prohibition against eating blood or flesh with blood in it:

And whatsoever man there be among you, that eateth any manner of blood: I will even set my face against that soul that eateth blood, and will cut him off from among his people. (Leviticus 17:10-14).

In their widely quoted reference, Blood, Medicine, and the Law of God, Witnesses constantly refer to the medical printed matter of the early twentieth century, which declared that blood transfusions are nothing more than a source of nutrition by a shorter route than ordinary. The prohibition extends not only to whole blood, but also to any blood derivative, such as plasma and albumin; however, blood substitutes are acceptable. [2] The consequences of violating the prohibition are dire: receiving blood transfusions is a sin, resulting in withdrawal of the opportunity to attain eternal life.

Despite the absolute nature of the prohibition, the answers to a number of questions remain unclear. These questions were identified by Albert R. Jonsen in a recent article: Can the sin of violating the prohibition be forgiven? Does it separate Witnesses from their community? Does it taint them permanently in some way? Is guilt incurred if someone receives a transfusion against his or her will or while unconscious? Jonsen observes that "these questions are not answered in the tract that Witnesses give to physicians, Jehovah's Witnesses and the Question of Blood," and that "requests to church leaders for clarification result in different answers to some or all of these questions." [3]

Additional complexities that bear on developing a policy were brought out at the March meeting of the IEC. Ambivalent patients under stress may, in extremis, decide to accept transfusion or even indicate their wish to be coerced, so that the transfusion is administered, in words, often uttered by Jehovah's Witness patients, "against my will." Conversely, some patients strongly desire the transfusion but in the presence of a church elder or under pressure from a family member, continue to refuse despite their wish to live. It was decided that these issues should be addressed in the new policy.

Nancy Dubler gave the committee some legal background. She noted that the courts, in general, have not identified Jehovah's Witnesses' refusal of life-saving blood transfusions as manifesting suicidal intent. Most court decisions have permitted physicians to transfer such patients to other physicians, and by such action, avoid a charge of abandonment of the patient. Courts have not permitted congregation members to refuse transfusion for their minor children, as that would be tantamount to medical neglect. Dubler also pointed out that there have been very few reported cases on the ability of pregnant Jehovah's Witnesses to refuse care.

Early Drafts

After several working sessions, in May 1985 the drafting committee presented a first draft of a policy at the IEC's monthly meeting. The drafting committee reported an especially challenging feature of its task: while remaining committed to protecting the right of competent adult patients to reject life-saving treatment, the drafters believed that a very high standard is required to establish the existence of a Witness's firmly held religious conviction, given the potentially catastrophic and irreversible consequences of refusal of blood. Of particular concern were three situations: where coercion from third parties could influence the decision of patients with decisional capacity; where incapacitated patients are subject to decisionmaking by coreligionists in the family; and where the patient is a child or a pregnant woman. These concerns were reflected in the first version of the policy presented to the committee.

This initial draft addressed the issue of pregnant Witnesses by adopting the framework set out in the U.S. Supreme Court's decision in Roe v. Wade. (see box)

At the May meeting of the committee, this draft was discussed in detail. Two changes were recommended. The second paragraph under the heading "Capacity," was amended to read (new clause in italics):

If the patient is found to lack the capacity to make the decision to refuse transfusion, transfusion will be withheld only if there is clear and convincing evidence of the patient's wish to reject treatment, such as the following....

This change was made to accord with the standard in New York state established in the Brother Fox case, which requires "clear and convincing evidence" of what an incapacitated patient would have wanted in regard to forgoing treatment. However, the final version of the policy abandoned this change, based on the judgment that the original statement was less ambiguous and in sufficient conformity with the law.

The committee agreed on a minor change in the section on children. A pediatrician observed that proper advocacy for infants and children demanded that the policy cover the possibility of serious harm, as well as life-threatening circumstances. This section was amended to read (new wording in italics):

In the event that medical judgment holds any delay to be immediately life threatening to the child or would produce irreversible harm, the transfusion should be given.

At the next meeting, the committee altered the section on pregnancy. The change was designed to conform to judicial wording by abandoning talk of "trimesters" and referring instead to the number of weeks. The newly worded section read:

In the case of a pregnant Jehovah's Witness's refusal of transfusion, policies relating to adult patients will apply before the twenty-fifth week. Beyond the twenty-fifth week the decision should be referred to the courts for adjudication.

The minutes of this November 1985 meeting contained the ill-fated prophecy:

The final version of the Jehovah's Witness transfusion policy was circulated for review. It will be submitted to the hospital administration following this last survey.

Consensus Development and

Reversals

Percolating in the background during the committee's ongoing discussions about the Jehovah's Witness policy was the issue of the necessity and desirability of resorting to the courts. The issue arose in connection with children of Jehovah's Witnesses, as well as with pregnant patients who refuse transfusions. At the request of the committee chairman, a guest presentation was made at the March 1986 meeting by Nancy Rhoden, a lawyer/bioethicist who was spending the year at Albert Einstein College of Medicine and Montefiore Medical Center studying ethical and legal issues in perinatology.

Rhoden began by laying out the general problems of physicians using the courts to enforce treatment decisions over patient objections, including the risk of converting physicians to agents of the state and the chilling effect on patients' free use of facilities due to fear that their wishes might be overridden. Nonetheless, Rhoden was in favor of appealing to the courts for required transfusions in order to demonstrate due regard for wishes of the refusing parents, wishes that should not simply be ignored by independent judgment of physicians, absent social or community enforcement, and because the law is clear and specific about the limits on parents' rights to act in a fashion that endangers the life of their children.

However, Rhoden was strongly against the courts ordering transfusions in pregnant women. She explained that the law does not impose requirements on pregnant women nor can it realistically do so. Women should not be forced to violate their own beliefs nor relinquish control of their persons and destiny.

There ensued a lengthy, intense, and animated discussion. The early consensus favored deleting in its entirety the clause specifying a special policy for pregnancy and relying on the policy governing nonincapacitated adults to cover pregnant women. It was also decided that representatives of the obstetrical service be invited to attend the next meeting.

At the April IEC meeting, as planned, two senior members of the obstetrical service shared their views with the committee and stated how they believed their colleagues would respond to the proposed policy.

They began by reviewing some of the medical indications for blood transfusion during pregnancy, and then revealed what they normally do and would continue to do in such situations. Both said that in case of immediate and unmistakable hazard to the fetus, they would seek a court order to transfuse the pregnant woman. They were then asked what they would do if the patient refused to go along with what the court had mandated. Would they forcibly restrain, anesthetize, or otherwise physically coerce a resisting pregnant patient? One physician said yes to this question, and the other replied that while he would not employ coercive measures himself, he would respect his colleagues who would.

In light of these sobering revelations, the chairman invited several committee members to make recommenations at the next meeting about what the policy should and should not address. It had become clear that the "final" draft was anything but that, and a rethinking was called for.

At the May meeting, brief presentations were made by a psychiatrist, an internist, Nancy Dubler, and myself. Among the issues addressed were:

* Whether court orders should be a mechanism specified in the proposed policy for coercing a pregnant woman into an unwanted transfusion.

* Whether a separate section specifying "discriminatory" treatment for pregnant women was desirable.

* The need to include a statement requiring full disclosure by the physician of his or her personal reservations and the likely course of action under circumstances of disagreement with the patient.

* The need to provide alternatives to physicians who face a dilemma.

Following a lengthy discussion, the committee affirmed the early consensus reached at the March meeting to delete from the policy the section specifically devoted to pregnancy. The committee also agreed that the policy should not specify the court order option, since it was already available to physicians who chose it. Finally, it was decided that the policy should include a "full disclosure" requirement in a revised, broad introductory section, with guidelines for physicians who could not abide by the patient's wishes. The minutes of the May meeting summarized the reasoning behind these decisions:

(a) A specific section would put pregnant women into a special category and could be seen as compromising their rights.

(b) Pregnant women have the same rights to control their bodies as do others. The dilemma arises out of the demand that they yield those rights because of pregnancy.

(c) It is morally questionable for a woman to refuse a relatively safe minor procedure and thereby jeopardize the fetus.

(d) But the religious beliefs of a poorly understood minority demand protection. These rights should be infringed upon only under extreme circumstances.

(e) Physicians have an obligation to disclose to a patient their unwillingness to honor the patient's autonomy and to indicate what actions would or would not be taken under specified circumstances.

(f) Physicians have a right and obligation to turn the care of such a patient over to another caregiver if the patient's needs are incompatible with the ethical and professional values of the physician. This is a basic, well established element of the existing canon of ethics.

A new preamble for the policy was needed, and the committee chairman asked Nancy Rhoden, who had been invited to continue to meet with the committee, to propose wording that would reflect the apparent consensus of the group.

The consensus at the May meeting was, indeed, only apparent. A member of the committee sent a letter to the chairman a few days after that meeting. The letter-writer expressed a "cry of anguish," noting that the committee had reversed itself over a period of a few months. He wrote:

....we have been decisively influenced by the view of two or three committee members. They are forceful, they are articulate, and I too am persuaded that the outcome they support (acquiescence to the patient's views) would be the right one, at least in most cases.

The letter went on to observe that just as the committee's present view is ethically grounded, so too is the contrary view. The writer questioned the adoption of a policy that stipulates, in effect, that it would be unethical to seek a court order authorizing a life-saving transfusion for a pregnant Jehovah's Witness.

The letter went on to reflect on the role of an ethics committee, making the thoughtful observation that we canot simply tell hospital staff "the answer":

We cannot expect staff members simply to defer to our authority, nor, I think should we want them to; that would not be ethical on their part. I therefore think that any statement we make on blood transfusions for Jehovah's Witnesses should point out that special issues exist when a transfusion is needed to save the life of a pregnant Jehovah's Witness; it should summarize the competing ethical views; and it should disclose all relevant facts, including the possibility that a court order could be obtained authorizing such a transfusion.... If we are not prepared to do this, then I think we should issue no policy on blood transfusions for Jehovah's Witnesses at all.

The committee member's letter was distributed to the entire committee, along with Nancy Rhoden's proposed new preamble statement. Also distributed was a newly written section on pregnancy. The chairman's covering memo said: "At the next meeting we will address the two submissions and decide, given acceptable language, whether we want one, the other, or both...in the best Solomonic tradition."

The Rhoden preamble went as follows:

Early in the course of treatment, a physician must discuss with each patient any religious, ethical, or medical beliefs of the patient that may limit his or her acceptance of a recommended course of treatment. If a physician feels that he or she would be unable, should need for such treatment arise, to accept and uphold the patient's choice, the physician should disclose this reluctance to the patient. The physician should also inform the patient of the alternative courses of action if patient/physician conflict appears likely, including finding another physician within the institution to care for the patient, or even locating a physician outside the institution. As soon as the possibility of actual disagreement becomes clear, the physician should make a good faith effort to locate a doctor who can in good conscience accede to the patient's wishes. If at all possible, this action should not await a crisis situation.

And the proposed new section devoted to pregnancy, drawn up to reflect the discussion that took place at the May meeting:

A pregnant woman has the right to control her body. A dilemma arises out of a demand that she yield this right during pregnancy because some physicians cannot ignore the presence of a "second patient."

Though it is morally questionable for a woman to refuse a relatively safe and minor procedure and thereby jeopardize the fetus, it is also morally reprehensible to infringe upon the person, privacy, and/or firmly held conviction of an informed adult.

Because of the dilemma that arises out of these opposing interests, physicians have an obligation to disclose from the outset their inability to honor a patient's autonomy and must inform the patient of those actions that would or would not be taken under specified circumstances that might conflict with the expressed wishes of the patient.

Every physician has the right and the obligation to turn the care of such a patient over to another caregiver if the patient's needs are incompatible with the physician's professional and ethical values. This course of action is ethically superior to the coercion of an unwilling patient.

At the IEC meeting in June 1986, three possibilities were considered for the final form of the Jehovah's Witness policy:

(a) a policy that made no mention at all of the pregnancy issue and did not address it directly;

(b) a policy with a preamble that addressed the issue of conflicting patient-doctor interests;

(c) a policy including a specific section on pregnancy.

After much discussion, a consensus formed around the latter two possibilities, with a preference emerging for the third. The committee thus accepted the argument that a policy must address the dilemma posed by the conflicting interests that arise in the case of pregnancy. In the hope of completing work on the Jehovah's Witness policy in a timely manner, the committee agreed to review two alternative model policy statements and choose one. At the July meeting, the committee elected to include both the new preamble and the specific section on pregnancy.

The Final Policy

The minutes of the September 1986 meeting included a reminder to the committee:

The Jehovah's Witness Policy has reached a 'final' stage and will be submitted for formal approval to the IEC at the next meeting. Please be prepared to vote on approval.

At the October meeting, the committee voted approval and turned its attention to other long-awaited business. Before being implemented, the policy still had to be approved by the Medical Board of the hospital.

The policy was placed on the agenda of the Medical Board meeting of February 1987, for discussion but not for a vote. The Board's response was generally favorable, but predictably, a heated discussion ensued over the procedures for taking care of pregnant Jehovah's Witness patients, and somewhat less predictably, for children of Witnesses. General concerns were voiced that the hospital could not realistically be expected to provide alternative physicians for those doctors who find a patient's refusal of transfusion incompatible with their own moral standards or feelings. Regarding minors, some board members expressed concern that "mature" children who were not technically emancipated would be prohibited, according to the policy, from refusing transfusion. The majority, however, concurred with the policy's avowedly paternalistic stance regarding minors: they stand in need of protection.

As for pregnant Witnesses, the same set of issues that had been discussed at length during the committee's deliberations surfaced at the Medical Board meeting. The chairman of the Board, one of the two obstetricians who had come before the IEC, remarked that the policy was inconsistent: it treated infants and children one way, and fetuses in the opposite manner. Three committee members who were present at the Board meeting defended the rationale that had prevailed in the "final" draft now under deliberation. Further discussion and a vote on the policy were scheduled for the April meeting of the Board. At its March meeting, the chairman of the Medical Board announced that any members interested in presenting their views to the IEC were invited to attend the next committee meeting.

At the meeting of April 1987, two obstetricians came to present their concerns (one was the chairman of the Medical Board, who had met with the committee a year earlier). Both obstetricians observed that many clinicians could not comfortably treat a healthy, near-term fetus as anything other than a "second patient." As before, some committee members concurred in this view, while others understood the physicians' feelings though disagreed with their conclusion. One committee member strongly defended the clear assertion in the proposed policy that the woman's rights take precedence over the interests of the fetus. She noted both historical and current political reasons for incorporating this statement into the document. Because of the potential for misapplication to the issue of abortion, the committee had chosen language that avoided identifying the fetus as a "second patient" or ascribing any independent rights to the fetus.

Now, however, once again choosing to reverse its previously reached consensus, the committee agreed that the unequivocal assertion of maternal rights was too extreme to be practically workable. In the view of some members, it was not even completely ethical. But the committee was quite unwilling to move to the opposite extreme of embodying in the policy an endorsement of compulsory transfusion of pregnant Jehovah's Witnesses.

After two years of work on this policy, the committee had reached an impasse. It became clear that specific guidelines for pregnant Witnesses could not be formulated. Committee members identified two apparent reasons for the impossibility. First, when it comes to weighting the relative "interests" or "rights" of the woman and the fetus, the stage of pregnancy inevitably influences the balance. The solution of opting for either extreme--respect for the rights of the woman or the fetus--was unacceptable to everyone. Second, and more importantly, the problem of ascribing rights and determining their precedence has not been resolved by the larger society. It is unreasonable, therefore, to expect a procedurally oriented policy to resolve a dilemma for which no substantive ethical solution has been forthcoming.

Reluctantly, the committee adopted the suggestion that it not even attempt to dictate a policy but limit its task to describing the competing principles, leaving the decision-making process to the patient and clinician. The committee agreed to that strategy, but remained adamant on the point that the policy should state the physician's obligation to disclose to the patient any difference of opinion concerning the woman's refusal of transfusion as soon as such disagreement is evident.

The policy now needed a new paragraph devoted to pregnancy. The group agreed that the section should be rewritten in a way that would not attempt to establish specific guidelines, but would identify the competing interests at stake. At the May 1987 meeting, a draft of the new paragraph was discussed and approved. At its June meeting, the committee was joined for a final time by the obstetrician who chairs the Medical Board, in order to iron out any remaining disagreements. The assembled group ended by agreeing on the following content and wording of the section devoted to pregnancy:

Competent adult patients have the right to refuse medical treatment. This right extends to pregnant women. However, some members of society assert that the fetus has "interests" or "rights" that compete with the rights of the mother to control her own body. In general, the rights of the mother are clearly acknowledged to take precedence in early pregnancy. As gestation advances, it becomes increasingly difficult for some members of society to ignore the "interests of the fetus." Because of the dilemma that arises out of these opposing interests, physicians have an obligation to disclose from the outset if, under specified circumstances, they would be unable to honor a patient's wishes.

Because society and the law have not resolved the conflict between fetal and maternal interests, the policy cannot establish clear guidelines for action where a clinician's interpretation of the interests of the fetus are in conflict with the wishes of the mother. The clinician and patient, with ethical consultation, must seek to resolve such conflicts within the context of the doctor-patient relationship and resort to other means for conflict resolution, including hospital administration, when necessary. Every physician has the right and the obligation to try to turn the care of such a patient over to another caregiver if the patient's wishes are incompatible with the physician's professional and ethical values. This course of action is ethically superior to the coercion of an unwilling patient.

At the July 1987 meeting of the hospital's Medical Board, after a brief discussion, the final version of the Jehovah's Witness Policy was passed unanimously. The policy was then referred to the hospital's corporate governing body for implementation.

References

[1] See for example, David A. Sacks and Richard A. Koppes, "Blood Transfusion and Jehovah's Witnesses: Medical and Legal Issues in Obstetrics and Gynecology," American Journal of Obstetrics and Gynecology 154:3 (1986), 483-86.

[2] G.I. Thomas, K.W. Edmark, and T.W. Jones, "Some Issues Involved with Major Surgery on Jehovah's Witnesses," American Surgeon 34 (1968), 538-44.

[3] Albert R. Jonsen, "Blood Transfusions and Jehovah's Witnesses," Critical Care Clinics 2 (1986), 92-93.

Ruth Macklin is professor of bioethics in the Department of Epidemiology and Social Medicine at Albert Einstein College of Medicine, Bronx, NY.
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Title Annotation:controversy over blood transfusions
Author:Macklin, Ruth
Publication:The Hastings Center Report
Date:Feb 1, 1988
Words:4574
Previous Article:The imperiled gift relationship.
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