Doctors May 9, 2013,10:56 am
By
BARRON H. LERNER, M.D. When my patient Suzy took herself off the active liver transplant list, she was too embarrassed to tell me. I found out from her liver doctors.
When I confronted her, we discussed her reasoning. I told her I would continue to support and care for her. But as her longtime physician, I had to ask myself a question: Did I have some type of duty to get Suzy to change her mind?
Suzy was first found to have primary biliary cirrhosis, a severe liver disease, in the late 1990s. By 2005, when she became my patient, she had developed partial liver failure with a swollen abdomen. When the liver specialists told her she would eventually need a transplant, she agreed to go on the active list, which would put in her line to receive a donor organ. That would not occur, however, until she was much sicker.
Meanwhile, Suzy was gradually deteriorating. Fluid accumulated in her chest cavity, which caused shortness of breath and required frequent drainage. I was glad a transplant was in her future.
So Suzy’s decision to leave the active transplant list stunned me. The reason, she explained, was religious. Hailing from Mauritius, Suzy was raised a Catholic but had converted to the Pentecostal church, a branch of evangelical Protestantism that emphasizes personal experiences with God.
She had recently had a discussion with the pastor of her church, who told her how God had healed his own illness. He added that he would never submit to surgery.
Although the pastor never told Suzy to decline a transplant, she was moved by his story and concluded that if she showed the same type of faith, God would provide a “miracle of healing.” Suzy’s husband, also Pentecostal, supported her decision.
The liver specialists involved in Suzy’s case were upset. But they told her they would keep her on the “inactive list” in case she changed her mind.
Meanwhile, they made sure that Suzy understood the medical ramifications of her decision. Her liver would continue to worsen, and at some point she would die without a transplant. Moreover, even if Suzy eventually changed her mind, she might have become too sick by then to be saved by a transplant. The liver doctors were persistent, bringing Suzy back several times to remind her of her dire prognosis. They had her bring her children to an appointment, hoping that they would convince their mother to change her mind.
I wanted to do even more. Suzy had been my patient for years. I also took care of her mother, her husband and one of her best friends. As someone who teaches bioethics, I wanted to respect her choice and her religious beliefs — but if I was too understanding, I might actually be “doing harm,” something physicians must always avoid. Moreover, I was not convinced that Suzy’s decision reflected her actual wishes.
When I spoke to Dr. Eva Sotil, her liver doctor, she agreed. While Jehovah’s Witness patients consistently reject specific medical interventions, most notably blood transfusions, Pentecostal teachings stress “divine healing” but do not prohibit surgery or transplants, she pointed out.
I also kept thinking about a former patient of mine with severe liver disease who had come to my office one morning extremely ill with a blood infection. Another patient might have survived, but her liver was too diseased. She died in intensive care. I wanted to avoid a similar situation with Suzy.
So I decided to apply some pressure. A 2010 article in the journal Annals of Family Medicine argues for “beneficent persuasion” when patients make counterproductive decisions not in their long-term interest. In this spirit, I cajoled Suzy. I brought up the topic at each visit, continually asking why her religious beliefs precluded a transplant. I also asked to speak to her husband and children. I offered to attend her next liver clinic appointment, thinking that a larger group of physicians might be more persuasive.
I even told her at a December clinic visit that the best Christmas present she could give me would be to go back on the active transplant list.
Ultimately, as her medical condition worsened, Suzy changed her mind. Her children were now arguing for the transplant. And Suzy had asked God for a vision telling her to decline a new liver. When she did not receive one, she decided to return to active status.
One day the following summer, I got an e-mail from the liver transplant team telling me that Suzy had undergone a successful liver transplant. I was working at a different hospital, but called Suzy right away. She was elated. Her massively swollen body was returning to normal, and she was no longer short of breath.
I asked her how she reconciled her faith with having the transplant. She told me that she had prayed to God to get a good liver. “He healed me through surgery,” she explained.
She also had kind words for her doctors. Without us, she said, “I probably would not be here.”
It had been nagging me whether I might have crossed some line in Suzy’s case, applying undue pressure against her right to choose. Perhaps I had. But hearing the joy in her voice, I felt justified.
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