Written advance directives refusing blood transfusion: Ethical and legal considerations

Written Advance Directives Refusing Blood Transfusion: Ethical and Legal Considerations Irwin Kleinman, MD, FRCPU, Toronto, Ontario, Canada

A patient’s automony and right to determine his or her treatment is widely recognized in current ethical theory and medical practice. However, conflicts between the desire to respect a competent patient’s religious conviction not to be violated and society’s interest in preserving life do arise. This paper examines two cases involving Jehovah’s Witnesses who signed cards refusing blood transfusions and who were subsequently transfused. In the Canadian case, the physician was found liable for battery. In the American case, the courts upheld the appointment of a guardian who authorized the transfusion. In the emergency situation, if there is a reasonable doubt about the validity of a treatment refusal, the presumption must be to render life-saving treatment. The author believes, however, that a written advance directive could be developed that respectes the religious convictions of Jehovah’s Witnesses and the ethical and legal responsibilities of physicians.

patient’s A automony and right to determine his or her treatment is widely recognized in current eth-

ical theory and medical practice.13 A basic reason for honoring the competent patient’s wishes is that the patient’s decision will under most circumstances promote the personal well being of that individual4 The principle of autonomy, however, allows an individual to pursue a course of action that is consistent with his or her priorities and values even to the detriment of personal well being. One of the forces that has helped nurture the principle of autonomy over the last three decades is society’s increasingly diverse moral pluralism together with the attempt to prevent one’s values from being encroached upon by others.’

This paper examines two cases involving Jehovah’s Witnesses who signed cards refusing blood transfusions and who were subsequently transfused. In the emergency situation, if there is a reasonable doubt about the validity of a treatment refusal, the presumption should be to render life-saving treatment.’

From the Centre for Bioethics, University of Toronto, and the Department of Psychiatry, Mount Sinai Hospital and University of Toronto, Toronto, Ontario, Canada.

Requests for reprints should be addressed to Irwin Kleinman, MD, Department of Psychiatry, Room 937, Mount Sinai Hospital, 600 University Avenue, Toronto, Ontario M5G 1X5, Canada.

Manuscript submitted June 23, 1993, and accepted in revised form December 6, 1993.

However, the author believes that a written advance directive could be developed that respectes the religious convictions of Jehovah’s Witnesses and the ethical and legal responsibilities of physicians.

Jehovah’s Witnesses are members of a religious de- nomination that was founded in Pennsylvania in the 1870~.~-~ Their objection to receiving blood is based on their interpretation of several passages in the Bible.“* The tenet prohibiting blood transfusions is definite, absolute, and important to Jehovah’s Wit- nesses.6 These individuals are prepared to die rather than receive a forbidden blood transfusion, although they want to receive the best alternative medical care.8 To convey their beliefs and wishes to the medical profession, some Jehovah’s Witnesses have es- tablished written advance directives by signing cards. These cards state that blood transfusions constitute an unacceptable medical intervention that should not be given under any circumstance.

THE CANADIAN CASE Mrs. Malette was seriously injured in an automo-

bile accident in which her husband died and she was unconscious when taken to the hospitalg~lo The emergency room staff found a signed Jehovah’s Witness card, neither dated nor witnessed, in her purse. A translated version of the text follows:g

No Blood Transfusion As one of Jehovah’s Witnesses with Iirm religious

convictions, I request that no blood or blood products be administered to me under any circumstances. I fully realize the implications of this position, but I have res- olutely decided to obey the Bible command “Keep ab- staining . . . from blood.” (Acts 15:28, 29.) However, I have no religious objection to use the non-blood al- ternatives, such as Dextran, Haemocoel, PVP, Ringer’s lactate, or saline solution.

The patient’s blood pressure dropped during the subsequent 90 minutes, despite having received Ringer’s lactate. A diagnosis of hypovolemic shock was made by the emergency room physician and was confiied by a consulting surgeon. At this point, the physician faced an agonizing dilemma. Was his oblig- ation to preserve life overridden by a treatment refusal expressed by this Jehovah’s Witness’ card?

The physician decided to administer blood to Mrs. Malette because he was not satisfied that the card represented an adequate instruction. He was not con- vinced that it necessarily represented the patient’s

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wishes in those life-threatening circumstances. The fact that he did not know if the patient had been competent and fully informed of the risks of refusing the treatment when signing the card contributed to his uncertainty.g~10

This case raises a number of issues. First, how much information is necessary for a physician to respect a patient’s refusal to undergo life-saving treatment when the physician cannot communicate directly with the patient? Second, can the physician adequately weigh this information under the time constraints and stress of the emergency situation? The physician believed there was a reasonable doubt concerning the patient’s informed rejection of treatment and, therefore, felt obliged to treat this patient. The patient survived and sued the physician. At the trial, the judge decided that the card represented a valid refusal of treatment and awarded damages of $20,000 (Canadian) for battery because treatment was given without the patient’s consent.g This decision was upheld in a unanimous decision by the Ontario Court of AppeallO

In the opinion of the Court,l” a physician may render treatment in an emergency situation without a patient’s consent by reason of necessity. The underly- ing assumption is that the patient would want the treatment if capable of giving instructions.1o A physician could administer a blood transfusion in the emergency situation without a patient’s consent and not incur liability only if the physician had no reason to believe that the patient would refuse the treatment.10 However, a physician would have to respect a patient’s advance instructions to refuse a treatment.1o The Court felt that the signed Jehovah’s Witness card “imposed a valid restriction on the emergency treatment that could be provided to Mrs. Malette and pre- cluded blood transfusions.“1o

THE AMERICAN CASE The patient, Darrell Dorone, was a 22-year-old

Jehovah’s Witness who was seriously injured in an automobile accident and unconscious when taken to the hospital.” The trial court issued orders on two occasions in response to emergency telephone calls. The first appointed a hospital administrator tempo- rary guardian with the authority to consent to necessary blood transfusions incidental to surgery to be performed for a subdural hematoma. The court had been advised that the patient had been carrying “some sort of card identifying him as a Jehovah’s Witness and indicating something about blood transfusions.“11 The court did not see the card because it had been left behind with other personal effects when the patient had been transferred by helicopter.

Two days later the court again appointed a hospital administrator guardian with authority to consent to blood transfusions. This was done prior to surgery for

a blood clot that had developed subsequent to the pre- vious surgery. The doctor had spoken to the patient’s mother, father, fiancee, and minister, and while his father had signed forms consenting to the surgery, the family would not consent to blood transfusions because they were Jehovah’s Witnesses. A lawyer for the family was involved in this case clarifying that the patient Mr. Dorone’s written advance directive stated that “I direct that no blood transfusions be administered to me even though others deem such necessary to preserve my life or health. This is in accord with my rights as a patient and my beliefs as one of Jehovah’s Witnesses. I hereby release the doctors and the hospital of any liability for damages attributed to my refusal. This document is valid, even if I am unconscious and it is binding on my heirs or legal representatives.“n

A superior court in Pennsylvania upheld the trial court’s appointment of a guardian who authorized the transfusion of Mr. Dorone.” The court felt that although the card would be some evidence of the patient’s wishes, it would not be sufficient to determine a substituted judgment.‘l The court felt it would need further evidence as to whether the patient had merely signed the card as an affiiation of faith with other members of his congregation or whether the patient had actually contemplated it as binding in a death- threatening situation. Finally, the court would want to know whether circumstances had intervened since the signing of the card that cast doubt on whether it still expressed the patient’s wishes.‘i The court noted that where the doctrine of substituted judgement had been followed, it was typically applied to allow refusal of life-sustaining treatments for patients with ei- ther terminal illness or limited life expectancy.” The decision was further upheld by the Supreme Court of Pennsylvania. l2

ETHICAL AND LEGAL CONSIDERATIONS A patient’s right to determine his or her own health

care is widely accepted. A Jehovah’s Witness who re- fuses a life-saving blood transfusion does not want to die but is prepared to do so because of a religious conviction that forbids receiving blood. Recent court decisions have upheld the right of competent adult Jehovah’s Witnesses to refuse blood transfusions. The Supreme Court of Florida (1989) in Wons VI. Public Health Trust of Dade County13 and the Court of Appeals of New York (1990) in Fosmire v. Nicolead4 refused to authorize blood transfusions for competent adult Jehovah’s Witnesses even though in both cases these individuals had minor children. Both courts decided that the remaining parent could take care of the children.

The emergency situation, however, usually neces- sitates immediate action, and an exploration of patient wishes is not always possible. Pellegrino and Thom-

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asmal believe that in the emergency situation “physicians should always act to reverse trauma or illness in spite of contrary expressions until the condition is judged irreversible and hopeless, or until the patient’s current wishes are demonstrated as antedating this new event and perduring to the present.“l Jonsen’ states that it is ethically justifiable for emergency room physicians to treat Jehovah’s Witnesses in the most ef- fective fashion given their limited knowledge about the patient. He does not however, address the specific issue of the presence of a written advance directive refusing blood transfusions.

The ethical justification for treating patients in the emergency situation is the principle of beneficence by which a person in serious need must be helped by one who can do SO.~ According to the principle of beneficence, one ought to do or promote good and/or prevent evil or harm2 Thus, one would transfuse an individual during an emergency to preserve the life and health of that individual.

The principle of nomnaleficence establishes the moral imperative to not inflict evil or harm2 Receiving a blood transfusion is a violation of a deep-seated religious conviction for Jehovah’s Witnesses.* There- fore, giving a blood transfusion to a Jehovah’s Witness would be contrary to the principle of nomnaleficence since it results in a violation of that individual. In the Dorone decision, the principle of beneficence that results in the preservation of physical life is given higher priority than the principles of autonomy and non- maleficence because the circumstances surrounding the signing of the card were vague. As a consequence, questions remained as to whether the card truly expressed the wishes and values of that individual.

The Jehovah’s Witness cards refusing blood transfusions in the Palette and Dorone cases were attempts at establishing written advance directives. Advance directives are intended to extend the principle of autonomy to a point in time of anticipated incapacity by allowing individuals to specify the type of treatment they would like to receive and/or desig- nate a proxy decision-maker in the event they become incompetent.15 This is an ethically desirable approach to this type of decision making.

In 1990, Congress passed the Patient Self-Deter- mination Act, requiring health care facilities receiving federal funds to inform patients of both their right to forego life-sustaining treatment and their right to complete an advance directive as permitted under state law.16 In most areas in which advance directives have been supported by legislation, the foregoing of interventions is permitted for terminally ill patients. l7 The Council on Ethical and Judicial Affairs of the American Medical Association recognizes the importance of advance directives but limits its application to the terminally ill or irreversibly comatose pa-

tients.ls In the Cruzan decision, the United States Supreme Court recognized the competent individuals right to refuse unwanted medical treatment but left it to the state to determine the nature of the circumstances under which a surrogate may withdraw life- sustaining treatment.lg

One limitation of advance directives is that, although they establish a way to project one’s wishes to a period of anticipated incapacity, there is no active par- ticipation and shared decision making at the point the decision must be made. Furthermore, one’s decision about hypothetical situations may differ from the decision one would make when faced with an actual situation. A Jehovah’s Witness who had refused blood transfusions with an advance directive would not have the opportunity to change his or her mind when the emergency occurred. Some might argue that an advance directive in this type of situation would not be acceptable because there is anecdotal evidence of Jehovah’s Witnesses who have changed their minds about blood transfusions when faced with imminent death. It may be, however, that those individuals who changed their minds had not been adequately informed about the implications of their initial decisions.

The difficulty for some physicians in accepting a Jehovah’s Witness’ refusal of a life-saving blood transfusion may be based on the view that the taboo against accepting blood transfusions is irrational and not worth risking death. The tenet that forbids blood transfusions, however, is definite, absolute, and of crucial importance to the spiritual well-being of Jehovah’s Witnesses.6 Given the definitive and over- riding nature of this tenet, the fact that the unwanted treatments are specific and that the outcome of treatment refusal foreseeable, it should be possible to obtain an adequately informed advance directive for these individuals.

DESIGNING ACCEPTABLE ADVANCE DIRECTIVES

The solution to any ethical dilemma is by its very nature a compromise. In determining whether society should permit advance directives for Jehovah’s Witnesses, the right of individuals to not have their spiritual lives violated would be weighed against the possible preservation of a life of a Jehovah’s Witness who might change his or her mind in that emergency situation. Well informed refusals of treatment that allow for adequate reflection and consideration of the relevant issues should minimize the possibility for last minute reversals in the face of death and should be permitted for Jehovah’s Witnesses.

It would be opportune for the Council on Ethical and Judicial Affairs of the American Medical Assoc- iation to reconsider its position limiting the application of advance directives to the terminally ill and ir-


WRITTEN ADVANCE DIRECTIVES/KLEINMAN

reversibly comatose patients. It would be helpful if further consideration could be given to determine what type of informed consent process would permit competent adults not suffering from terminal illness to a priori refuse treatment. In the United States, the involvement of the American Medical Association or the American College of Physicians in the develop- ment of a written advance directive permitting Jehovah’s Witnesses to refuse blood transfusions would assist in making physicians comfortable with accepting at face value information presented to them in emergency rooms.

In developing an informed consent process for Jehovah’s Witnesses, one would want to determine that the individual had the ability to understand and appreciate the implications of the decision to refuse the treatment. Similarly, one would want to ensure that no coercion was involved. The informed refusal could be obtained in two sessions to allow for adequate reflection. Once an informed refusal was obtained by an adequately trained individual, a card could be issued that would include the relevant information, the date the consent was obtained, the Jehovah’s Witness’ signature, the signature of the person obtaining the informed refusal, and possibly the patient’s picture. This consent process could be re- viewed annually or biannually.

A number of questions would need to be answered. First, who would obtain the informed refusal? One possibility would be the Jehovah’s Witness’ family physician. The family physician would also be able to clarify the individuals thoughts on receiving other life-saving measures (eg, intravenous immunoglobu- lin, erythropoietin injections, etc). If blood were needed. as a result of a suicide attempt, would the state’s interest in preserving life supersede the individuals right to refuse the treatment? Suicide is considered a sin by Jehovah’s Witnesses.6 Therefore, one could justifiably question the strength of the convictions and the mental state of a Jehovah’s Witness who attempted suicide. Society’s right to prevent suicide is well recognized; therefore, it would be appropriate to transfuse in this type of case.

What would one do if a document other than the approved one is found on the patient or if in the ab- sence of a documented treatment refusal a surrogate wanted to refuse the transfusion? These would be difficult dilemmas. However, if one were able to develop an informed refusal process generally available to all Jehovah’s Witnesses, one would have to be very hes- itant to honor anything other than the accepted documented informed refusal process. Nevertheless, it would be difficult to transfuse a Jehovah’s Witness who had a standard wallet card refusing blood transfusion and a spouse or adult child adequately ex- plaining why this patient had not utilized the accepted

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documented informed refusal process and earnestly assuring the medical team that the card represented the unconscious patient’s current wishes.

A surrogate decision-maker who wanted to override the documented expressed wishes of an tmcon- scious Jehovah’s Witness refusing a blood transfusion would have to be evaluated very carefully to determine the validity of the concerns. If the surrogate was only expressing his or her own views, this would not be sufficient reason to override the patient’s expressed wish. If the surrogate, however, had new evidence as to the patient’s current wishes, ‘this would need to be considered.

There may be circumstances in which a patient is not unconscious but because of the trauma experi- enced is semiconscious or disoriented. In these situations, it is necessary to assess the patient’s competency. In addressing issues of competency, two types of errors need to be avoided. Competent patients should not have unwanted treatments imposed on them and incompetent patients should not be allowed to suffer the harmful effects of a bad decision.4~20~21 Attaining the right balance between these conflicting objectives can be difficult.

The President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research concluded that the decision- making process requires that the patient possess a set of values and goals, the ability to communicate and to understand information related to the task at hand, and the ability to deliberate and reason about the op- tions.4 The semiconscious Jehovah’s Witness who wants to refuse a life-saving blood transfusion pos- sesses a set of values. However, an impairment may exist in the ability to communicate, to understand information, or to deliberate and reason about the choices. The documented informed refusal process would be useful in clarifying the patient’s wishes.

A criticism may be made that the proposed review of the consent process annually or biannually may constitute an unreasonable burden that may be open to court challenge. In determining the optimal review period, it is necessary to weigh the inconvenience of the review process against the necessity of reafflrm- ing that the document still expresses the patient’s wishes and that no other circumstances have intervened to change the patient’s views.

Although the informed refusal process outlined in this paper would not be legally necessary in Canada given the decision in the MuZette case, using this type of process would lead to more informed decisions there. In the United States, establishing a protocol for timely interaction with a hospital attorney and appropriate court official to conduct an emergency hearing would be advisable7 given the precedent set by the Dorone case.

WRlllEN ADVANCE DIRECTIVES/KLEINMAN

CONCLUSION The informed refusal process outlined in this pa-

per attempts to clarify and substantiate the wishes of competent autonomous individuals. The dilemma in the Mdette and Dorone cases results from a conflict between the desire to respect a competent patient’s religious conviction not to be violated and society’s interest in preserving life. In the emergency situation, if there is a reasonable doubt about the validity of a treatment refusal, the presumption must be to render life-saving treatment. It should be possible, however, to develop an informed refusal process that respects the religious convictions of Jehovah’s Witnesses and the ethical and legal responsibilities of physicians.

REFERENCES l.Pelleerino ED, Thomasma D. For the Patient’s Good: The Restoration of Beneficence in Health Care. New York, NY: Oxford University Press; 1988. 2. Beauchamp TL, Childress JF. Principles of Biomedical Ethics. 3rd ed. New York, NY: Oxford University Press; 1989. 3. Jonsen AR, Siegler M, Winslade WJ. Clinical Ethics: A Practical Approach to Ethical Decisions in Clinical Medicine. 2nd ed. New York, NY: Macmillan; 1986. 4. President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Making Health Care Decisions: A Report on the Ethical and Legal Implications of Informed Consent in the Patient- Practitioner Relationship. Vol. 1, Washington DC: Government Printing Office; October 1982.

5. Harrison BF. Visions of Glory: A History and Memory of Jehovah’s Witnesses. New York, NY: Simon and Schuster; 1978. 6. Jonsen AR. Blood transfusions and Jehovah’s Witnesses. Crit Care Clin. 1986;2:91-99. 7. Fontanarosa PB, Giorgio GT. The role of the emergency physician in the management of Jehovah’s Witnesses. Ann Emerg Med. 1989;18:1089-1095. 8. Jehovah’s Witnesses and the Question of Blood. Brooklyn, NY: Watchtower Bible and Tract Society; 1977. 9. Malette v. Shulman. 63 OR2d., 1987. 10. Malette v. Shulman. Supreme Court of Ontario, Court of Appeal, October 12-13,1989. 11. In re Estate of Dorone. 502 A.2d 1271, PA.Super., 1985. 12. In re Estate of Dorone. 534 A.2d 452, PA., 1987. 13. Wons v. Public Health Trust of Dade County. 541 So.2d 96, FL., 1989. 14. Fosmire v. Nicoleau. 551 N.Y.S.Pd 876, Ct.App., 1990. 15. President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Deciding to Forego Life-Sustaining Treatment. A Report on the Ethical, Medical, and Legal Issues in Treatment Decisions. Washington, DC: Government Printing Office; March 1983. 16. Omibus Budget Reconciliation Act. 1990 (U.S. Public Law 101-5081, 4206,4751. 17. Emanuel LL, Emanuel EJ. The medical directive: a new comprehensive advance care document. JAMA. 1989;261:3288-3293. 18. American Medical Association. Current Opinions of the Council on Ethical and Judicial Affairs of the American Medical Association - 1986. Chicago, III: American Medical Association; 1986. 19. V Cruzan, Director, Missouri Department of Health (19901, 110, SCt 2841. 20. Drane JF. The many faces of competency. Hastings Cent Rep. 1985;15(2):17-21. 21. Drane JF. Competency to give an informed consent: a model for making clinical assessments. JAMA. 1984;252:925-927.


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Written advance directives refusing blood transfusion: Ethical and legal considerations