Now Its Time to Take Ethics Quiz I
From Associated Press today: “CORPUS CHRISTI, Texas -- Child welfare officials seized a 12-year-old cancer patient from her parents, saying they were blocking radiation treatment that doctors say she needs.” With this story in the background to show how society can affect parental medical decision-making, let’s all take an ethics quiz using 3 variations of a different scenario.
Scenario 1- Both parents of a 12 year old son, who has already received two courses of very symptomatic chemotherapy treatments for a fatal cancer condition without improvement, are informed by the boy’s physicians that another treatment is “medically indicated” but the chance of response and improvement is only one in ten and may be much less. The physicians insist on attempting one more course, however both parents feel the toxicity to their child will be too profound and refuse to approve the therapy. The physicians want the court to take custody of the child if the parents refuse.
Scenario 2- Same as Scenario 1 but the son when informed by the physicians that he may die without another course of chemotherapy does not give assent to the treatment.
He explains that he doesn't want to experience the terrible symptoms he had with the previous treatments.
Scenario 3- Same as Scenario 1 but there is parental disagreement: mother approves another course and the father refuses. The son when informed that he might die without another course of chemotherapy does not give assent for the same reason as in Scenario 2.
Write me your comments about what you think is the most ethical resolution of each of the three scenarios if the goal of the decision-making is to provide care in the best interest of the 12 year old patient. ..Maurice.
posted by Maurice Bernstein, M.D. @ 7:42:00 PM
4 comments
4 Comments:
In the first scenario, the parents and the child's wishes should certainly be respected. There is a time to let go. In the second, it would depend on how much difference the radiation/chemo made-If survival is very likely with the treatment and unlikely without it, then the child should have the treatment, regardless of HIS wishes (that's why minors still have parents). There is a place for consideration of a child's wishes in terminal or serious disease, but children do not have the judgement necessary to make some decisions alone. Whether the courts should take that decision away from the parents is problematic. I think court intervention should be reserved for when parents can not agree (3rd scenario), do not have the child's best interests in mind, or do not have the capacity to make the decision. I'm not sure the second example fits that. If I were the parent, I would certainly get more than one opinion before starting a toxic therapy that might not be effective.
5in9years
went through this in real life, but without the court issue. Drs & ex-husband pushed for the 3rd treatment. I gave in. Almost lost her. It took six weeks before she could come home. Cancer hit a vital and she expressed her choice of no more treatment. She said, " there are somethings that are worst than death." I asked later if she regreted her decsion when she knew death was not far away. She said no. She was 13 when she died. She was wise and brave.
Sc. 1 should become Sc. 2 by asking the child, but not just the one question: "To treat or not to treat?" Other questions re meaning of life, death, and general decision-making capacity (DMC) should be assessed. Depending on the outcome, the judgment might be that the son is best able to speak for himself and should prevail.
In Sc. 3, since the parents are the legal decision-makers and they disagree, an ethics consult to evaluate their motivations and DMC should take place. Part of the evaluation should include a family psychiatrist/psychologist to meet all -- separately and together.
I wrote scenario 1 specifically because it was incomplete. I wanted to emphasize that all medical decisions should be discussed with the child involved. This is done not only to provide the child information about the hurt and good of a procedure but also as an attempt to get the assent or dissent of the child and the child’s explanation of the response. The words and the degree of detail, of course, would depend on the child’s maturity. For example, in a two year old, the communication would be about the good but also possible discomfort and what will be done to minimize it. In a 12 year old, the benefits and risk of a procedure could be outlined as for an adult and then detailed as requested by the child. Listening to the child explain his or her understanding of the procedure and then the rationale for his or her assent or dissent of the procedure could provide the basis for establishing the degree, even though not full, of the child’s decision-making capacity and understanding that the degree of the child’s capacity may be greater in one decision than another. This then might be considered, perhaps even by the court, in the weighing of the parental decision.
In scenario 2 and 3, an attempt is made to obtain assent of the child but the child’s explanation is incomplete unless the child expresses whether and how he weighed the discomfort against the fragile benefit of the treatment. This would require the child to tell about his life goals and values that may not be as yet developed. Thus, one cannot fully estimate the child’s capacity to make this decision.
Finally, in scenario 3, the decisional conflict between the parents, requires, as Dr. Terman points out, mediation and psychological assistance since, without resolution, decision-making might be messy and the parents are going to have to live with the conflict long after their son is gone. ..Maurice.
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