The high-risk obstetrical unit of a university medical center received an urgent call. A 26-year-old woman, Ms. A, had been delivered of twins, by Cesarean section, 2 days earlier in a town some distance away. The infants were normal and thriving. The mother had seemed to tolerate the procedure well at the time, but she had now, suddenly, "crashed." Her blood pressure and pulse were approaching the level of hemodynamic shock. The presumptive diagnosis was internal hemorrhage, but the referring hospital did not have the facilities to determine the origin of the hemorrhage or to stem it. The referring hospital urgently requested that a helicopter be dispatched to pick up Ms. A and bring her to the university hospital, which was a regional perinatal center.
Within the hour Ms. A was wheeled into the university hospital emergency room and rushed immediately to the operating room. She was weak and frightened but conscious and seemingly lucid. As the gurney sped down the corridors, she gave verbal consent for whatever diagnostic and therapeutic measures would prove necessary, but with one exception. She asked that no blood be administered, because she was a Jehovah’s Witness. She was too weak to press the point, and the staff was too concerned about her immediate survival to discuss it. Without articulating it, they took the position that they would keep all options open and worry about philosophical discussions later.
In the operating room, contrast solution was introduced into Ms. A’s pelvic circulation so as to identify the bleeding point radiographically. At the same time, she was typed and cross-matched for transfusion. Her hemoglobin and hematocrit were dangerously low. Type O negative blood had been hand-delivered from the blood bank and was on hand. The pelvic angiography revealed that a vessel ligated during the surgical delivery had ruptured and was actively spilling blood into the pelvic space.
Just then, the patient’s husband, Mr. A, and brother-in-law, Mr. B, arrived at the hospital and appeared on the unit. They quickly thanked the staff for their prompt attention to Ms. A and echoed her objection to the use of blood and blood products. They stressed that she was a Jehovah’s Witness. Her husband reported that he and she had three children, ages 4 and 3 years and 18 months, in addition to the newborn twins. All were doing well. They were being cared for by close relatives and members of the congregation. The obstetrical resident, reluctant to leave Ms. A’s side, dashed out to explain that her life was probably at stake. Under these circumstances, he was certain, her husband and relatives would understand that there was no alternative to blood transfusions. No, Mr. A and Mr. B repeated, blood products were not to be used, no matter what the consequences.
Hardly able to believe what he had heard, the resident went back into the operating room to see how his patient was faring and to prepare to close off the source of the hemorrhage. By this time, the attending obstetrician had arrived. He had been informed about the clinical situation and had considered it in the few minutes it took him to reach the operating room. He was not inclined to let the life of a healthy young mother of five slip through his hands because of a completely irrational religious belief, conveyed by a woman in shock and two men who claimed to be relatives, but whom he had never seen before and whose background and motivations he had no time to explore. For all he knew, the whole family had become Jehovah’s Witnesses impulsively, only weeks or even days earlier. Didn’t Jehovah’s Witnesses come around ringing doorbells and converting people? The attending obstetrician had his own religious beliefs; he had gone to medical school, taken the Hippocratic oath, and spent countless sleepless nights learning how to save the lives of mothers and babies. He knew what his duty was. Just to be on the safe side, he told the clerk to reach the hospital attorney and administrator-on-call.
In the operating room, the attending obstetrician and invasive radiologist prepared to perform a newly developed procedure. At the same time, the obstetrician ordered that the blood that was on hand be administered quickly, under pressure, both because of the gravity of the clinical situation and because he wanted to do what he could for Ms. A before the situation was further complicated by relatives, lawyers, and administrators. The intravenous pole with the hanging bag of blood was kept out of Ms. A’s direct view, and she did not appear to notice that she was about to receive a transfusion. In any event, her consciousness and strength were waning. Soon she would not be able to consent, or object, to anything. How could anyone be sure that her refusal to accept blood was fully informed? All that could be discussed if her life could be saved. If she died, it would be a moot point.
Under radiographic control, using the catheter through which the contrast material had been injected, the obstetrician directed a bolus of a synthetic agglutinizing material to the site of the rupture in the pelvic blood vessel. Just as the procedure was being performed, Mr. A and Mr. B, who had, unbeknownst to the staff, been watching through the window in the operating room door, burst into the operating room. Before anyone inside could react, they had slipped the clamp onto the tubing conveying the blood transfusion into Mrs. A’s arm and were about to pull the intravenous connection out altogether.
There was an uproar. Mr. A and Mr. B had intruded into an area off limits to nonmedical personnel and had actively interfered with medical treatment. Some members of the staff began shouting at them; others set out to remove them physically; and still others called for help from the hospital security team. Mr. A and Mr. B were equally outraged but more controlled. They left the room quietly but only after assuring themselves that no blood was flowing into Ms. A’s veins. Outside the door of the operating room, they reminded any staff members who approached them that both they and Ms. A had explicitly forbidden the use of blood in her care. They questioned how they could be expected to leave her unprotected in the care of the staff in the face of incontrovertible evidence that her directive had been violated. Over the quiet but determined voices of Ms. A’s family members, staff members were shouting: "Don’t you understand your wife could die? Don’t your babies need their mother? This is no time for philosophy; it’s a life-and-death situation!"
In the operating room, meanwhile, staff had regained their wits and resumed caring for Ms. A. They resumed the radiographic studies. They were relieved, and exhilarated, to see that the procedure had worked; it appeared that the hemorrhage had been stayed. After some minutes of observation, they decided it would be safe to remove the angiographic catheter and conclude the procedure. With a few stitches and a pressure dressing, Ms. A was ready to leave the operating room for the intensive care unit. She was extremely pale, weak, and exhausted from the blood loss, the unexpected emergency, the procedure, and the hullabaloo. She made few spontaneous comments, but she did ask for word about her twin newborns and her other young children.
The staff were beside themselves. The intern, especially, was undone. She had chosen obstetrics as a specialty because of the attraction of bringing children into the world and protecting mothers and babies from harm. She was enormously impressed by the technical procedure that had saved her patient’s life. She had been taught that treatments could not be administered without the informed consent of the patient, but it had never really occurred to her that a patient would refuse a straightforward, painless infusion that was necessary to save her life. How could she possibly comply with such a refusal? It flew in the face of everything she had trained for, everything she believed in, everything she cared about, everything she had sworn an oath to do. How was she to care for this patient now? She did not know whether she was relieved that she was not on call that evening or sorry that she could not follow this case through the night.
In the midst of this melee, a member of the staff thought to call for psychiatric consultation. Into the fray came the consultation psychiatrist. The attending obstetrician, patience worn thin, demanded, "You talk to these people. They must be crazy." The resident pleaded, "Isn’t there some way to diagnose a mental problem in this patient?" Although several people were trying to speak at once, and despite the atmosphere of alarm, the psychiatrist managed to piece together the story. Ms. A’s relatives were not, themselves, patients, and they had neither asked for nor agreed to consult with a psychiatrist. Although no formal mental status examination had been performed, there was nothing in the account to raise concern about a psychosis or even a delirium in the patient. But this was, or had been, a life-and-death matter. The psychiatrist had young children of her own. She could not begin to imagine making a treatment decision that would leave them motherless. She would see what she could do. She went to the patient’s bedside.
Ms. A was deathly pale and weak, but she readily agreed to a psychiatric interview. She proved to be well-oriented, lucid, of normal intelligence, and well aware of her medical situation. She expressed love and concern for her children. She reiterated her objection to blood transfusion and suggested that the psychiatrist ask her husband and brother-in-law to explain her feelings. The interview had further exhausted her by this point, and the psychiatrist was reluctant to press her to talk further. She went into the corridor to speak to the relatives. Mr. A and Mr. B were patient and cooperative but quite anxious. They informed the psychiatrist that the patient had been born a Jehovah’s Witness. Mr. B was a minister, and Mr. A a leader, in their congregation. Their lives, and those of the patient and the children, revolved around the church. The whole community at home was praying for the survival and health of Ms. A.
The psychiatrist went to check on Ms. A’s condition. The artificial clot seemed to be holding fast. Ms. A’s hematocrit and hemoglobin were stable. The psychiatrist and the obstetrical staff began to hope that the transfusion problem would go away. As the furor abated, however, there was one problem: a stable hematocrit is not equivalent to a hematocrit compatible with life. House staff and attending physicians searched the literature. No patient with blood indexes as low as these had ever been reported to survive. It seemed incredible that a person could be basically healthy and currently very much alive and lucid but be doomed to die. She might be terribly weak and vulnerable to infection and other complications, but surely, with proper protection, now that the crisis was over, she had a chance of gradually regenerating her own blood cells.
Accepting that approach would have simplified the psychiatrist’s job. One could argue for the powerful healing power of hope. But the literature made it clear that this would be denial, not optimism. A new round of interviews and discussions began. Even as she lay exhausted from her terrifying ordeal, Ms. A and her family had to be informed of the scientific realities. The attending physician, hoping that the powerful facts would jolt the family into reconsidering their stance, conveyed the results of the literature review in no uncertain terms. They were saddened, but they did not budge.
At the same time, the staff had to deal afresh not only with their intense and highly internally and interpersonally conflicted feelings about Ms. A’s decision, but also with an unusually wrenching clinical situation. Here was a young and previously perfectly healthy woman, a woman for whom the difference between life and death was the administration of a substance, blood, which staff members perceived as a commonplace medical treatment (this event took place before the HIV era) with no emotional or moral valence. The death of this woman would leave five preschool children motherless—an eventuality she dreaded. The reasons for the woman’s refusal to accept the simple, available treatment were utterly incomprehensible. And the woman was going to die, over a period of many hours, while in their care.
A new round of legal approaches were proposed and considered. Although some staff members voiced the opinion that patients who refused the treatment recommended should be discharged or transferred, that option was not clinically or legally feasible. Could the psychiatrist not find some pretext for declaring Ms. A incompetent? The psychiatrist had to consider at what point repeated mental status examinations and queries about the patient’s religious beliefs and understanding of the clinical situation and prognosis would become harassment. Although Ms. A’s state of consciousness was likely to deteriorate, there was no reason to believe that her basic competence or convictions had changed.
What about the rights of the children to their mother’s care? That was a worthy concern, with possible legal consequences for the hospital, but, in the final analysis, it did not supercede her right to refuse medical treatment. Ms. A and her relatives were repeatedly confronted with arguments about the interests of the children. They rejoined that the living relatives, and, indeed, all the members of the church were ready and willing to provide loving, comprehensive care and support to the children, especially since their mother would have died a martyr to the religious convictions they all shared.
The lawyers and hospital administrator, in addition to these specific arguments, considered the overall algorithm: what was the hospital’s liability if it should accede to Ms. A’s wishes, and if it should supercede them? The relatives would actively intercede in any attempt to obtain or implement a court order for blood administration, and the relatives and patient would doubtless bring and publicize legal action against the hospital were blood to be given without such an order. On the other hand, the relatives in this particular case would be extremely unlikely to bring suit, or to prevail in a suit, if Ms. A were allowed to die. The documentation of the hospital’s efforts to explain and persuade was extensive.
How would a jury react to each of the alternatives? It is generally difficult to rouse a jury’s indignation over an intervention that saved a life, and a jury’s respect for life-saving interventions would presumably be increased by the presence of five children who still had their mother. But juries also respect the law, and the law was clear. Ms. A had a lifelong affiliation with an established and recognized religion that mandated her behavior, and she had made an informed and competent decision.
Back at the bedside and in the nurses’ station, new tensions had broken out. The nursing staff had not been invited to participate in the medical, ethical, and legal deliberations. Decisions were conveyed to them, verbally and in written orders in Ms. A’s chart. It seemed to them that doctors and administrators could go off into conference rooms and make philosophical and legal decisions while they had to remain with a conscious, young, basically healthy patient and watch while her life slipped away under their care. What about their ethical responsibilities?
Over the hours of medical intervention, persuasion, and discussion, they had gotten to know their patient. She was a brave and personable young woman, a model patient, and they had grown to like her. They were tortured by the thought of her unnecessary death, her little children at home, and her sadness at the prospect of leaving them. As with the physicians and administrators, some thought she had no right to abandon her own life and those responsibilities she had taken on, and others felt strongly that her wishes should be respected.
These conflicts were also enacted in struggles about the presence of Ms. A’s family. Family involvement was a fairly new, and therefore emotional, concept on the obstetrical unit. The healing power and support of family members for a patient who was laboring or ill had just been "discovered" by researchers and incorporated into hospital policy. Family members were permitted to remain at the bedsides of dying patients without regard to visiting hours. These particular family members were extremely involved and dedicated, but these particular family members seemed to be the factor that stood between life and death for their patient. When they were out of Ms. A’s room pressing their case with the staff, Ms. A’s resolve weakened. When they returned, her determination to avoid blood transfusions was reinforced. Should the nurses encourage the family to remain with the patient or attempt to exclude them?
One veteran, kind, and well-respected nurse, herself the mother of a large family, turned out to be a Jehovah’s Witness. She had not made her religious affiliation public until this time, but now she began to advocate for respect for the patient’s religious beliefs. But she did not feel entitled to explain or justify those beliefs. She was surrounded by staff members who repeatedly expressed strong negative feelings, ranging from utter bafflement to outright hostility, about the patient’s stance: "She must be crazy."
Meanwhile, the nurses at the bedside watched as Ms. A had a final visit with her little children, held her husband’s hand, and, alert to the end, declined. Her clinical course followed the descriptions in the literature. Approximately 24 hours after admission, she died.
The death of Ms. A did not resolve the feelings and conflicts of the participants in this real-life drama. Each person who had been involved was wondering whether he or she might not have done something, somehow, to save Ms. A’s life and was blaming others as well. Nurses were upset with other nurses, physicians with other physicians and with administration, and each discipline was upset with the others. The conflicts hung over the department. Instruments were slapped into the hands of gynecologists in the operating room without the usual comfortable banter. When the nurses changed shifts, reports were given through clenched teeth. Residents wrote orders in charts, flagged them, and slammed the charts on the desks in nursing stations. Discussions about patients were curt. Most exchanges consisted of comments like these:
"We’re just waiting for that lawsuit."
"You aren’t the one who will be accused of malpractice."
"What about the rights of those children?"
"You didn’t have to sit at the bedside and get to know [Ms. A] and then watch her die,"
"Why did you have to create such an uproar? [Ms. A’s] wishes were clear. Why couldn’t you let her die in peace with her family? You made a circus out of her last hours on earth."
"How could you let that healthy young woman die?"
"This is a hospital, not a church."
"That isn’t a religion, it’s insanity. This death was the fault of psychiatry."
At this point the consulting psychiatrist stepped in once more. She recognized that despite all the talk, there had been no real discussion. Nor did any of the major participants, including herself, understand the beliefs of Jehovah’s Witnesses better now than they had at the outset. Should another, similar clinical situation arise, the institution would be no more prepared to handle it than it had been before Ms. A was admitted. The consulting psychiatrists proposed that a special, 2-hour grand rounds be devoted to a review of the case and of the issues it had posed. Each perspective would be presented by its adherents. She would invite representatives of the Jehovah’s Witness Church to present a formal explanation of their position.
Plans for the grand rounds, which was a suggestion readily accepted, channeled the feelings of the various factions into preparations for their presentations. The scholarly context and the lapse of several weeks, which allowed tempers to cool, enabled people to listen to each other with respect. The sentiments that had been muttered in anger were articulated and now made sense to people who had taken opposing positions. The representatives from the Jehovah’s Witness Church brought copies of several brochures written for the medical profession. Both the brochures and their oral presentation were impressive. It was not that Jehovah’s Witnesses were suicidal, unappreciative of the value of life, or unaware of the safety of blood products or their life-saving properties. They elaborated the biblical passages from which the proscription on the use of blood is derived. They explained that the use of blood products was, for them, as great a sin as murder. They asked the medical staff to imagine how they would feel if they could live through a medical emergency only by causing the death of an innocent child. One might be desperate to live—but not desperate enough to commit such a sin.
The Jehovah’s Witnesses were well aware of the problems their beliefs caused for the medical profession. They understood that it was somewhat unfair to ask the medical profession to care for sick patients, and sometimes watch them die, without access to an important and readily available part of their armamentarium. The clinicians and administrators had had no idea that the Jehovah’s Witnesses were empathic with their situation. They had assumed that church members, like members of some other religions, would believe that they and they alone had the correct interpretation of the scripture and that those who did not share their interpretation were unenlightened or misled.
The psychiatrist’s roles in this difficult episode were several: ascertainment of mental status, evaluation of religious affiliation, assessment of competence, education, advocacy for the patient’s autonomy, facilitation of communication, and conflict resolution.
The psychiatrist, although called upon to override or circumvent them, could not, and cannot, expunge the ethical and religious conflicts from the medical arena. Psychiatric intervention cannot substitute for the appreciation of cultural and religious differences--an appreciation that was insufficient in many of the medical staff members involved in this case-- and that should be an integral part of medical school, residency, and continuing medical education. Psychiatrists can advocate for and participate in this integration.
Received July 20, 1998; revision received Sept. 25, 1998; accepted Oct. 5, 1998. From the Illinois Masonic Medical Center, Chicago. Address reprint requests to Dr. Stotland, 919 West Wellington Ave., Chicago, IL 60657.