Friday, February 13, 2009

Adolescent Self-Determination, Cancer, and Ethics

Harvard Medical School's required course in "Medical Ethics and Professionalism" had its first seminar session yesterday. The topic was informed consent.

For part of the seminar we discussed the following real life situation:
In June 1994, Billy Best, 16 years old, was diagnosed with stage II Hodgkin's disease. With chemotherapy and low-dose radiation, 90-95% of such patients can be cured. Without treatment, death is likely. After two months of chemotherapy, he was reportedly experiencing minor side effects such as hair loss and fatigue. At this point he ran away from his home. In a note to his parents, he said that he didn't want any more treatment, the chemo was "poisoning his body" and that he was tired of having "no say" over his treatments.

He was missing for several weeks. His family made multiple television appeals. Finally he made phone contact with his parents from Texas, and agreed to come home only if he could refuse any further chemo. His parents readily agreed, and he returned home, with television coverage on the news. He and his family said that they would like to continue to see their doctors at the Dana Farber Cancer Center, but only under the conditions of no further chemotherapy. What should the oncologists do.?
The 13 first year students took the role of the oncologists while I played Billy. Although I gave them a hard time, and didn't yield at all to their efforts, I thought they did a superb job of trying to persuade me to accept chemotherapy by eliciting a rich sense of what I enjoyed most in life, letting me know about the bad prognosis without treatment, the likelihood of a positive response, and the fact that while the side effects felt terrible (not "minor" as described in the vignette, which obviously wasn't written by Billy), they would only last for a few months.

When Billy persisted in his refusal, explaining that he wanted "natural treatment," not "poison," and that he trusted God to make things turn out right, they asked to speak with his parents. I shifted into the role of Billy's father, and supported my son's position.

Given that their best efforts at rational persuasion had not changed "Billy's" mind, the discussion shifted to the question of whether the oncologists should turn to coercion, and ask the court to require treatment. The seminar was divided, much as society is. One group, including students with a libertarian bias, couldn't stand the idea of a 16 year old who loved being alive dying an avoidable death. This group would turn to the court. Others were impressed with Billy's thoughtfulness and the fact that his parents loved him, understood what the doctors were saying, but supported his choice. They took Billy's stand to reflect an informed consent that should be respected. This group proposed to follow Billy, hoping for the best, but intending to negotiate with him if the cancer progressed.

I had done a web search before the class to see if I could find more information about Billy Best's fate. To my surprise I found a website created by his parents. After much inquiry Billy had taken Essiac, an herbal potion. He and the family had made much use of prayer. The cancer had disappeared, and the last posting on the website (2007) shows the picture of a handsome, healthy-looking 29 year old.

Here's what the website says about Essiac:
Everyone interested in organic herbs has the right to know the truly wonderful history of Rene Caisse and her legendary ESSIAC ®. For 55 years, and with a large measure of success, Nurse Caisse used her herbal formula which she named ESSIAC ® to help thousands of people.

Dr. Frederick Banting, world famous Canadian, discoverer of INSULIN, winner NOBEL PRIZE 1923, concluded in the 1930’s that it was the positive benefits of taking ESSIAC ® which had helped to restore a woman to a healthy state.

It was Rene Caisse’s formula and the remarkable results she achieved with ESSIAC ® that stimulated 55,000 people - those she had helped, their families, their doctors, and friends - to sign a petition in 1938 requesting that Rene Caisse be permitted to continue, without fear of prosecution, her work with ESSIAC ®.

Rene Caisse diligently and closely protected her original botanical formula by not revealing it to the medical authorities and others in the scientific and business community. Before she would reveal her formula, she wanted official public recognition by governing bodies of the merits of ESSIAC ®. She also insisted on a guarantee that ESSIAC ® would continue to be available to people, and not disappear into secluded laboratory testing on animals, which had happened to other non-toxic drug free materials.
The students and I discussed what to make of Billy Best's story. Being schooled in the scientific method and educated not to base conclusions on "anecdotes," none of us were inclined to become believers in Essiac. If the substance is studied rigorously in the future and found to have anti-cancer efficacy we will recognize the error of our ways. But we all took a lesson about prognostic uncertainty and the need for humility. I felt that wasn't a bad end point for our first seminar.

1 comment:

Jim Sabin said...

Michael Yesley, a good friend since college days (we both studied philosophy) who has had a distinguished career in law and ethics, sent me an email comment about Billy Best. With Michael’s permission, I’m posting his note (slightly edited):

Dear Jim –

“Your vignette as presented is a downstream-looking problem - what to do with a recalcitrant near-adult patient - with an exercise in acting out the doctor's attempt to convince the patient to "swallow his medicine" and a discussion of seeking a court order to make him do so. We recently had a case in Washington State where the judge allowed a 15-year-old Jehovah’s Witness to decline treatment that entailed blood transfusion, and he died soon after. I think the libertarian view is not to go to court but to let the patient decide for himself - however, that's not my issue.

I agree this exercise may be valuable in training doctors-to-be how to deal with this sort of situation, but I question whether that's a needed lesson for your intelligent students. Instead of blaming the patient and trying to get him to correct his irrational position, I think a more important, upstream question should be raised: wasn't it a medical failure that things came to this pretty pass, and how can doctors avoid this sort of situation arising? How might they have structured their communications and proposed treatment at the outset to deal with all of Billy's potential problems? And more broadly, how should doctors deal with patients' inclinations toward alternative medicine? "What should the oncologists do?" is a broader question than you posed.

Also, Billy's survival brings his diagnosis into question. I'm way out of my element here, but doesn't his survival raise an issue about the either-or diagnosis? I mean, was there a gray area that his physicians disregarded?”



Here’s my response:

Hi Michael –

Thank you for this comment. It’s like being back in college, batting around questions of philosophy and ethics!

Your suggestion that attention to the “upstream” factors – whether the dramatic breakdown of the relationship with Billy could have been prevented – is a good one. In general, when we’ve discussed an ethical issue we ask “what could have prevented this problem from arising in the first place?” The emergence of a nasty ethical conundrum often lets us identify an area where quality can be improved. In this particular case we didn’t know anything about what happened upstream. But in general a useful ethics class or consult will include the kind of upstream preventive considerations you are asking for.

With regard to “alternative medicine,” I encourage students to (1) always be interested in learning about patients beliefs and inclinations, (2) learn about the “alternative” regimes that patients in their clinical area commonly turn to, (3) apply the same evidence-based approach to “alternative medicine” that physicians should be applying to “allopathic medicine,” and (4) evince humility about the uncertainties that exist throughout medicine & respectful interest in the patient’s beliefs. Usually a mutually acceptable course of action can be developed, but sometime doctor and patient must agree to disagree. When my patients insisted on following regimens I didn’t favor I’d say some version of – “I hope you’re right and things turn out well – let’s see how things go…”

Re Billy’s diagnosis – the case material suggests that the evidence for Hodgkin’s Disease was very strong so I accept the diagnosis. Billy and his family believe that Essiac and prayer cured him. I’m agnostic about what did the job.