I want to start this paper by talking about what I think was the most impactful

Transcription

1 Zachary Solomon Two missed classes 6 page paper I want to start this paper by talking about what I think was the most impactful class for me and how our discussion made me reflect on a very personal part of my life. About midway through the semester you asked us to imagine that we were working in the ICU and we had to talk to a family about their recently born child. We were to imagine that this child had an absolutely appalling physical birth defect that would have ramifications for both their physiological function and their outward appearance. You then asked us to give what would be our initial reaction, and how we would approach the parents. What would we say to them, what would we counsel them to do? How would we feel and react? I say that this is a personal topic for me because my little sister was born with a previously uncharacterised FBN1 mutation with pathological consequences similar to those of a Marfan s patient. However, her phenotype is very markedly different. The condition is unnamed and there are currently only 4 other people that are thought to have the same mutation. If you are interested in getting an idea of what my sister looks like and how it relates to our task of imagining an appalling defect, look up Lizzy Velazquez, a girl who has the same mutation. Her first claim to fame was being named the ugliest girl in the world by a viral youtube video, and she has recently made a name for herself as a motivational speaker on TED after being invited to several talk

2 shows. It was an odd experience indeed when I was living in Spain the year before starting medical school and I had my Spanish friends posting videos of Lizzy on their facebook with subtitles declaring that she was an inspiration to them. Anyways, despite having Abby in my family, it wasn t until after class that her presence in my life impacted my thinking on your scenario. I want to share my initial reaction, and thoughts that I have had during med school, and then share how those thoughts changed during the course of your class, but particularly after that specific session. I first confronted the question what would you do for the life of this child in a lecture for the elective Compassion in the Art of Medicine. We had a family who spoke about their child born at 26 weeks with short gut syndrome, autism, and a whole other host of problems. He spend the first 9 months in the ICU to the tune of 6 million dollars. Today he is a relatively healthy boy, but I kept finding myself asking the question during the presentation why would medicine go to such lengths and expend so many resources to keep alive a child who had such an abysmal prognosis. Would it not be better to allow this child to pass, via an act of omission and while administering palliative care, in a manner similar to hospice? Another experience made me confront this question. I was at my preceptor site and we had a child come in for a check up. He was also born very preterm, and suffered from severe cerebral palsy. My preceptor showed me how he was unable to relax the adductor muscles in his thighs, and I noticed that he seemed unable to even control

3 where his eyes moved. He was attended all hours of the day and would never be independent. He couldn t even feed himself. It was a very emotional encounter, and I couldn t help but ask myself why this child was kept alive? What kind of quality of life does he enjoy, and how big must the burden be on his caretakers, both financially, emotionally, and time wise? It is a very difficult thing to explain to yourself why your first, visceral reaction upon seeing another human being is asking why they has been kept alive. I was prepared to face this question in the context of hospice, where I am very against heroic end of life care that provides little value. But these experiences made me confront this challenging question in beginning of life care. I am at Baylor because I wanted to make a career out of helping people improve their health, and here I am in my first year wondering why medicine had intervened to keep these sick children alive? As a Jewish person who is very connected to the Jewish community, if not the religion, I was even more distraught when we discussed the rationale that the Nazi party used to justify euthanasia. Their thinking, that disabled individuals would use too many resources, would require too much investment, was part of my initial reaction when I saw this child with cerebral palsy. It is very shocking to see the beginnings of their perverse logic existing within my own instinctual reaction. When you fostered the discussion in class, I was relieved to hear, both during and after, that many people shared my reaction and reasoning. I was not the only heartless monster. People admitted to feelings of disgust, shock, sadness, guilt. Some

4 of my friends that I talked with after class admitted that they have felt similar reactions to mine, particularly during the Compassion s lecture that I mentioned earlier. Essentially feelings that wrestling with this question provoked in me seemed to be universal. I was a little bit taken aback and decided to call my Father, who is a OBGYN who has been practicing for 28 years. He has had many premature deliveries, and I wanted to listen to his take on omission of care for critically ill babies. I caught him on call and laid out everything I had been thinking, focusing on the cerebral palsy patient. He agreed that it was difficult to see a sick baby, but asked me: Well, what about Abby? When she was born nobody could give my parents a prognosis. There were predictions that she would die at 2 days, at 2 weeks, at one month. That she would never walk, talk, or be intellectually capable. My parents told me that every day for months they were afraid that she would suddenly pass away. She spent months in the ICU and completely upended our family life. I was young when all of this took place but there were things that I remember. My Dad stopped working, my Mom didn t sleep and both of them were constantly breaking down into tears and sobs around the house. Today Abby is perfectly healthy and just recently flew to New Orleans by herself to spend her 21st birthday with her camp friends. While I was wrestling with these questions, it never occurred to me to consider Abby s situation. I think this is in part because I don t see her as being any different than anyone else; she is simply my sister.

5 After some reflection, I have realized that it is ok to have these reactions, and that they stem in part from us being unfamiliar with what we are seeing and scared of what is different. During the Compassion s lecture, I will never forget that the father himself admitted that he will never forgive himself for being disgusted by his own baby the first time he saw him. However, I now realize that it is not our place to decide the value inherent in each human life and deem that others, although burdened by difficulties, do not deserve or enjoy life enough to justify their care. What I consider to be a low quality of life is specific for me and is a product of my own life experiences and observations. Thus, it is not applicable to others, especially when used as a means to advocate the termination of their life saving medical care. Just because because the cerebral palsy patient is disabled and unable to communicate doesn t mean that life as he knows it is less worthy than my own. For that matter, I don t know how any normal healthy person other than myself experiences their life. Having Abby in my family wasn t necessary for these conclusions, but it made my feelings that much more real and important. In my initial reaction I was essentially justifying what would have been the omission of care from my own sister. It was very difficult admitting this to myself, and like the father from the Compassions lecture, I will always be ashamed. However, it is empowering to know that I didn t let my first thoughts guide me and that I used my ability to reason and discuss my feelings with others to come to a new conclusion. After all, it is not our emotions that define us as humans but rather our actions.

6 I am very grateful that this class has provoked me and allowed me to confront these difficult moral questions that I am sure to face during my career. I think that it is very important for people to study how the atrocities committed by Germany could have been seen as normal by well intentioned physicians. As I have experienced myself, it is very easy to let your instincts take over your judgment and reasoning, but as physicians we must adhere to the belief that we cannot judge the value of a life. When faced with difficult decisions we must search to discuss with our colleagues and search people outside of medicine who can help to provide a broader context to our thinking. We have a privilege to take care of our fellow human beings, and we cannot betray our duty by succumbing to flawed logic, whether it comes from a political or medical establishment, or even from within ourselves.