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he woman, who was in her 50s, had thyroid cancer, and scans suggested it had spread to her lungs.

But her doctor, Michael Fratkin, knew there were options.

“It’s like, well, what a bummer you have metastatic cancer, but we have a sort of magic missile for that kind of cancer, and it can be controlled,” he thought to himself. “All you have to do is swallow three iodine capsules.”

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The woman, a Hmong immigrant, spoke little, if any, English. Through an experienced interpreter, Fratkin explained the protocol and told her she would need a lung biopsy to confirm the diagnosis. After the procedure, he told her he felt confident the protocol he had described would cure her.

The woman, though, was incensed.

“Something about how we explained what we were doing didn’t match her way of thinking about things,” Fratkin recalled. “She thought we gave her cancer in the chest.”

Thousands of Hmong emigrated from Southeast Asia after the Vietnam War, when the CIA recruited them to fight or spy on the United States’s behalf, only to face harsh repercussions after U.S. forces withdrew.

Many Hmong understand physical illness in mystical terms: an evil spirit, or “dab,” can enter the body if a person is badly startled, for instance, or if a baby’s placenta is not properly buried. A dab might depart only if a person takes specific actions, like drinking an herbal remedy while also leaving a cup of the remedy for the dab to drink.

The Hmong’s beliefs about medicine and illness, combined with hard-earned suspicions about American institutions, can mix poorly. Even from the start, she was cool toward him, and inscrutable.

“Never ever did I get a glimpse of something I recognized,” said Fratkin, who has practiced in Northern California for two decades.

Still, he persuaded her to accept the cancer treatments.

Then, at the last minute, she refused — for reasons Fratkin could not understand, even with his interpreter’s help. He contacted a social worker with experience with the Hmong community, and helped pay for the social worker’s visit.

His patient agreed to try. Again, she backed away at the last minute.

“I’m like, ‘I just have to accept that she doesn’t want to take the medicine. She understands as well as she’s going to,’” Fratkin said.

Six months later the woman’s cancer invaded her femur, causing her enormous pain. Fratkin convinced her to undergo surgery to stabilize her knee, but as she was being prepared for anesthesia, she balked again. Eighteen months later she died.

“I felt terrible,” Fratkin recalled. “They were always mad at me, and I never understood what the hell was going on.”

On the first anniversary of her death, a small box arrived in the office mail. In it, a photo of the woman, in traditional Hmong dress, from decades earlier. There was a note, and a palm-sized packet wrapped in ceremonial red and green paper.

He opened the packet. It was a portion of the woman’s ashes.

The note was in pencil, with sketched symbols Fratkin didn’t recognize. It took him three or four readings to understand that it was a curse. “The message was, ‘You killed my wife. Her spirit will haunt you forever.’”

“It was like taking a knife to my side,” Fratkin recalls.

He stashed the package, but the pain stuck with him for years.

Slowly, he began to see her case in a different light. He had created an altar of sorts — “artifacts of people I care for and people in my life.”

He eventually put the ashes and the picture there.

“I realized I had no idea how she experienced her circumstances, what she really wanted or needed, the nature of her family’s suffering and joy and how they think of each other and health care, and how they were dropped like a package under a parachute to America from their context of northern Laos,” Fratkin said.

“The cure I was offering was mine, not hers.”

The failure to see issues through patients’ eyes is a common-enough affliction among doctors and nurses alike, Fratkin and others say, and it can be especially destructive for patients approaching life’s end. A growing body of health literature claims to define a “good death,” with prescriptions around end-of-life interventions that fit the bill.

But some patients may want more and some may seek less. It is their call, Fratkin said, and not their doctor’s.

“I realized I had no idea how she experienced her circumstances, what she really wanted or needed.”

Dr. Michael Fratkin

Because the Hmong woman had undergone the lung biopsy, she had to be anesthetized — leaving her in a state that some Hmong believe can prompt the departure of one’s soul. She also awoke to new chest pain from the procedure and a visible injury, which they may have seen as further evidence that the procedure had caused her grave harm.

Had she not undergone the biopsy, perhaps she and her family may not have suffered as much, Fratkin realized.

Two years ago he treated a woman with an advanced gynecological cancer. Her oncologists were pressing her to continue chemotherapy treatment, despite the fact that it showed few signs of working, and left her too exhausted to function.

“We met, and she just cried and cried,” he said.

The woman had struggled with a methamphetamine addiction, but had stayed off drugs when she entered cancer treatment. In her adult life, she’d rarely experienced sobriety and good health simultaneously. She said she wanted to stop the treatments and enjoy whatever time she may have remaining.

She had had a sometimes fraught relationship with her mother, and rarely had the money or time to enjoy luxuries. Fratkin arranged for them to receive a tandem spa treatment. In appointments, he reminded the woman of her options — including the option to decline chemotherapy.

She quit the treatments, and her quality of life improved dramatically.

Once again, though, his counsel brought him scorn — from her oncologists.

This time, Fratkin was unconcerned. “It was her choice to make. Not mine.”

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  • Dr. Fratkin’s homage to his patients is commendable.
    This is obviously an after death homage to patient’s misconceptions/miscommunications/culture-differences/ignorance……and possibly more unknowns.
    On the other hand and when refusal to administration of sedatives, therapies, drugs, have many different reasons and types other than above, why not grant a patient’s wishes unless physicians are at risk.
    Also, procedures should be an interactive shared experience. A procedure where if one is able to admire the beauty and/or disease impact on health, function of one’s own tissue, GI track, reproductive organs and life support organs; one would learn to better deal with it and understand treatment. Granted, it is not for everyone and not every procedure can be presenced but it could be video taped for further discussion and with in the legal aspects of protection, understanding and agreed upon clauses before viewing and discussion.
    It is not about wanting to become a doctor in a set of visits rather than decade(s) of schooling and practice. It’s about realizing how accessment and treatment would impact one’s own health and life.
    Balancing knowledge, risk, disease, therapies, medication and new technology applications is not for the faint of heart given so much unethical and unsubstantiated ongoing findings in all fields involved.
    Great insight. Thank you!

  • Doctors treat diseases, conditions, syndromes. They do not treat people. It seems to me that 25 years ago, I was treated as a person, with my own thoughts and values. That was back when I knew my physician and she at least recognized me. Now a days, my primary care physician does not have time in the next three days to see me with a sore throat and high fever. Go to the walk in clinic, go to urgent care, go to the ER. Go somewhere else. It doesn’t matter if they have your history or records. They are not treating you, they are just treating a sore throat with fever.

    • This comment is spot on, mostly. The “specialty” of Palliative Care is person/family centered as its core offering.

      If you happen to be troubled by severe illness that is life threatening and generally progressive…

      …. and you happen to be in one of the few communities that have home-based palliative care programs that are adequately staffed….

      …. and you have a healthplan that pays for the value you receive rather than the stuff that’s done to you…

      …and you have the wherewithal to refer yourself or an enlightened primary care provider willing to make the referral…

      Then you will discover that palliative care teams represent people caring for people on their own terms to reach the goals they themselves define. We focus on symptom control, for sure, but more importantly we are committed to the empowerment of people with information and support as they make sense of their circumstances and make their own choices.

      http://www.resolutioncare.com

    • Fantastic book that I must have read at least twice as I fumbled and bumbled my way through the above story.

  • Western doctors also think in unscientific ways. They call it “psychiatry.” They have imagined it explains behaviors they think are inappropriate and diseases whose causes they don’t know, such as epilepsy and gastric ulcers.

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