Posted: May 25th, 2022

Thoughts and feelings about the Trosacks’ choice

Genetics Case Study

Thoughts and feelings about the Trosacks’ choice

I have very mixed feelings about the Trosacks’ choice to continue the pregnancy. On the one hand, I consider myself to be both pro-choice and pro-life. I do not anticipate ever making the decision to terminate a pregnancy, even if there are complications with that pregnancy suggesting that the child may have a birth defect or other disability. However, I also wonder about the wisdom of carrying to term a child when that child’s condition is, essentially, incompatible with life. If the Trosacks’ testing had revealed one of the trisomys that suggests infant death without immediate medical intervention, I would support a decision to terminate. However, a Tay-Sach’s diagnosis is not quite in the same category. The child will have at least 3, and probably 6 months of high-quality life. Furthermore, while the prognosis is negative for the child, the possibility exists that the disease will onset in adolescence or even as an adult. I am also concerned about the fact that their decision seems, in part, to be motivated by anger and denial. I am not certain that the Trosacks have the emotional wherewithal to deal with the very real demands that a special-needs infant will place on them. Rita’s irrationally blaming herself for the condition, combined with Peter’s extreme anger gives me serious concerns about the stability of the marriage and even makes me worry about the possibility of emerging domestic violence. Therefore, while I support their decision from an emotional standpoint, I think it might not be the best decision from an intellectual standpoint.

My job as an advocate is to gather the information and support necessary to help the Trosacks with their choice. At this point in time, I do not have any problems with advocating for their position, because they are still gathering information, and I feel like information and support are necessary for them to make the decision that is right for their family. However, to me, the most important consideration for an advocate is to make sure and listen to the family. Given more information, they may change their mind about continuing the pregnancy. If I remain their advocate after birth, they may make a decision not to provide a feeding tube or other medical interventions. I need to ensure that I understand that position, instead of making assumptions about their beliefs and attitudes, in order to advocate for them.

The primary legal consideration that effects the couple’s decision to continue the pregnancy is that there are limitations on late-term abortions. While they probably want time to thoroughly evaluate their options, and might later come to the conclusion that an abortion would have been a better option for them, the window of opportunity for that choice is a narrow one. It is critical that the Trosacks understand this situation. To me, the primary ethical consideration is not one directly involving their choice not to terminate the pregnancy. I think it would be difficult to argue that it was ever unethical to keep a consensually-conceived child. However, the scenario does suggest an ethical issue. Peter is described as angry and in denial, while Rita is described as feeling very guilty. To me, that raises the concern that Rita’s choice to keep the pregnancy may not be the one she would make without Peter’s influence. While both of their needs should be considered, Rita is the patient, and I believe that, ethically, team members need to have some meetings with her without Peter present, not to influence her decision, but to ensure that the team is carrying out the patient’s wishes.

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