I will never forget the day my mother got diagnosed. I could swear that just yesterday I was thirteen years old waiting anxiously to be called in from the waiting room of some fancy New York State doctor’s office.
I was young, but I had some idea of what was going on. I knew my parents and I were there because they were going through a divorce and fighting for custody of me. What I did not know was that we were about to endure a court-ordered psychiatric evaluation and that the results were going to change my life forever.
“Madeleine, your mom is very sick,” the psychiatrist attempted to explain to me. I did not understand. I did not know a sick person could look perfectly healthy. “It’s not a physical sickness, it’s in her head. She has a mental disorder called Paranoid Schizophrenia.” She went on using big words to explain how my mother’s brain “wasn’t like other people’s brains.” I sat there listening closely, hanging on every word the woman was saying to me. “She can’t help the choices that she makes, it’s not her fault that she is the way that she is. She needs help.” Every day since that day in the doctor’s office, that remark replays in my head over and over. “She can’t help the choices she makes.”
That is what gave me the most trouble. I sat around for years and years watching the choices that my mother was making, unable to intervene. If she cannot help the choices she makes, why could my dad or my mother’s other family not make the choices for her? Why could nobody make her take medication? I eventually learned that it was because my mother was sick, but “not sick enough.” The court ruled in favor of autonomy and said that my mother still had the right to make her own medical decisions. According to them she was functional and was not posing an immediate danger to herself or others. I understand autonomy. Autonomy is defined as “a principle in which a person should respect the rights of other individuals to freely determine their own choices and decisions” (Jonas). I understand how important free will and the ability to make choices about your own body are. It is hard for me, however, to understand how you can continue to honor a person’s right to make their own decisions, when every decision they make is only hurting them. It is hard to sit there, as a loved one, and not want to just make them take the medication they need to get better, or force them to participate in that research study that just might help.
Many people see consent as something simple. Black or white, yes or no. A person can make their own decision to participate or not. But see, consent is a far more complicated thing once you are the person hoping and praying that your loved one will actually give it. For me, years passed by and every doctor recommended my mother a new medicine, a new research study, or a new form of therapy. She actively refused all of it. She refused to consent to anything and everything because she did not think she was sick. My mother truly believed every effort to help her was an attempt to hurt her in some way. How are you supposed to help someone that does not think they need help? Someone that thinks everyone is out to get them? How can you possibly get informed consent, when a person has no true understanding of reality?
As a researcher using human subjects, you have a duty to abide by the Common Rule. These ethical principles are discussed in a paper named The Belmont Report (CPHS). The Belmont Report was created by the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. To summarize, the report states that researcher must follow the principle of respect for persons, beneficence, and justice. Respect for persons is defined as the principle “first that individuals should be treated as autonomous agents, and second, that persons with diminished autonomy are entitled to protection” (CPHS). Beneficence is defined as an obligation to “do not harm and maximize possible benefits and minimize possible harms” (CPHS). Justice is a principle about the necessity of the fair and equal treatment of others.
Informed consent is a major component involved in each of these three principles. A researcher must ensure that the participant is fully aware of the procedures, possible side-effects, and purpose of their research. Then, once the participant consents to the study, there must be a possibility for them to withdraw their consent at any point throughout the study. When dealing with human subjects, the principle of respect for persons ensures that the autonomy of each subject is respected, and that those with limited capacity are protected. However, when it comes to those with limited capacity, the question arises: If they cannot participate in research, then how is it possible to develop new drugs or new methods of treatment? It is a tricky question. We all want the treatment to be developed, but nobody wants it to be done using their loved ones for fear of side effects.
If you had asked me before my mother got sick whether or not I believed it was ethical to make a sick adult take medication against their will or participate in a research that they did not fully understand, I would have said absolutely not. I would have explained to you that everybody has the right to make decisions for themselves, even if they are bad ones. Now, after experiencing the last seven years with my mother, I would tell you that it is much more complicated than “making decisions for yourself.” Sometimes people truly are not capable of making good life decisions even if they are deemed to be functional. If my mother had understood the reality of what was going on, she might have actually consented and taken steps towards recovering. But just as she did not consent, someone in her exact same circumstances might have given their consent and it might have been detrimental to them. I think that it is important to try and understand all sides of the argument in a situation, as the researcher, the participant, or the loved one. When your loved one is sick, all you want is what is best for them. The question is do you actually know what is best for them? You might believe that the best thing for them is to force them to get the medication they need. But, what if they already feel so out of control that trying to control another aspect of their life could push them too far? When my mom got sick, it was like she wasn’t my mother anymore. I didn’t recognize the person that had raised me. All I wanted was her to get help and be the woman I knew when she wasn’t sick.
I have given much thought to the process of consent and the ability of loved ones to give proxy consent for those that are sick and I have concluded that it is never ethical to give proxy consent or force a person with limited capacity into a treatment or subject them to research if it is not going to be personally beneficial to them and their health. I do, however, believe that it is okay to medicate and treat patients without their consent if and only if they are evaluated by a professional and the research or treatment is already proven to be beneficial.
STUDENT VOICES | CHYNN PRIZE FIRST-PLACE WINNER
By Madeleine Cardona
Madeleine Cardona ’18, a student in Fordham College Rose Hill, is majoring in political science and was awarded first place in the Fordham University Center for Ethics Education 2017 Dr. K. York and M. Noelle Chynn Undergraduate Essay Prize in Ethics and Morality.
National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research (1979). The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects in Research.
Jonas: Mosby’s Dictionary of Complementary and Alternative Medicine. (c) 2005, Elsevier
Written By Fordham University Center for Ethics Education