In a case of a patient with impaired decision-making, is the physician obligated to go through with a transplant when the transplant-related mortality would be on the order of 50%, and possibly as high as 80%?
I recently consulted on the case of a patient who had T-lymphoblastic leukemia/lymphoma in 1991 when he was 3 years old; he was treated with chemotherapy and autologous transplant. He survived but suffered a cerebrovascular accident during therapy that has left him with some cognitive impairment and some physical limitations. He recently developed worsening pancytopenia, and we feel that he has a therapy-related myelodysplastic syndrome, for which the definitive treatment would be a stem cell transplant. The patient has multiple other comorbidities, including hepatitis C, diabetes, and esophageal varices; however, his functional status is good and he is able to work part-time as a house painter.
The consensus of our transplant team is that his transplant-related mortality would be on the order of 50%, but might be as high as 80%, and that the odds that he will obtain a meaningful long-term survival are less than 20%. Because of these odds, I am reluctant to undertake the transplant.
The patient is cared for primarily by his very involved and dedicated mother, who is his primary decision maker. I do not think he can make his own decisions, especially for something as complicated as a stem cell transplant. She adamantly wants to pursue the transplant since we have told her that palliative chemotherapy and supportive care would be his only other option.
Am I obligated to go through with the transplant?
This rather heartbreaking case instantiates many of the most complex issues in clinical oncology. I will try to take them one at a time.
The first is the issue of decision-making capacity. Decision-making capacity in medicine is, generally speaking, assessed clinically. That is, we make judgments all the time about whether our patients have the capacity to make decisions; the vast majority of the time it is obvious whether they do or not. It is important to remember that decision-making capacity exists on a spectrum (ie, it isn’t all or none) and that it must be assessed in relation to a specific medical decision-in this case, the stem cell transplant. I trust your judgment about the fact that this patient does not have the decision-making capacity to make this particularly complex decision, but if a clinician truly has questions about capacity, referral to a psychiatrist experienced in capacity determination is the best option. I suspect that one of the reasons this case is so hard for you is that the decision to proceed with transplant would be much less problematic if the patient were making his own decision.
The second issue is the question of what is in the best interests of the patient. This question is extremely complex given the poor risk-benefit ratio your team estimates, as well as the arduous, prolonged, and burdensome treatments that would be required. Reading between the lines of your description, I infer that you feel transplant is not in the patient’s best interest but are having difficulty because the patient’s mother feels strongly that he should undergo it. We clinicians are appropriately careful (though not always successful) about trying not to impose our own values on a decision. After all, who could know more about the patient’s and family unit’s values that the patient’s own mother?
Finally, there is the underlying issue of how best to manage the disagreement about the best course of action and the potential ensuing conflict with the patient’s mother. In such circumstances, I believe that what’s most effective is to have a very frank and open conversation about how you feel about the decision, conveying that you have reflected deeply on it and considered it carefully, and admitting that you are struggling greatly with the right thing to do. It is important in such a conversation not to be directive, but rather to let the patient’s mother know why you are having such a difficult time with the decision. Such admissions nearly always have the effect of increasing the patient’s or family member’s trust in you (because talking honestly about one’s feelings communicates caring in a very profound way). The more trust you have “in the bank” with this patient’s mother, the more likely she is to be open to exploring the possibility that her son might forgo stem cell transplant.
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