Respecting Autonomy

The Education of a Clinical Ethicist

My training and education in medical ethics has taught me many things, from the rules and standards within the American healthcare system to the language and jargon often utilized in clinical conversations. I also learned to trust people to make their own medical decisions. And how challenging it can be to actually live up to that standard.

I went into the field of medical ethics believing that I would become a moral expert, someone who can look at a challenging situation and use his skills and knowledge to know and explain which decision is the right one. I would have insights that others would not, and I would use them to improve healthcare.

To Serve and Be Present

But when I started working as a clinical ethicist, like many things in life, I quickly learned that I was young, naive, and misinformed. The world is much more complicated than I originally thought it would be. And more importantly, I learned that my role as a clinical ethicist is different than I thought it would be. It was not to serve as the moral expert, but rather simply to serve. That service can come in many different forms. That service could be providing clarification of the ethical dimensions of a particular situation, letting others know what are the ethical standards and parameters, and what is the logic and reasoning behind a decision. This is what the medical team expected of me.

I also learned that patients had very different expectations from me, expectations that took a different form and required different skills. Sometimes I needed to give moral guidance, saying that it is okay for them to make a decision. Other times I needed to clarify things for them, help them understand the medical world and how decisions are made. But more often than not, I was needed to simply be present and listen. There is great power in sitting with people, asking them to tell you their stories, and taking the time to truly listen to them. Personal connection fostered a culture between the patient, families, and myself that led to better and more ethically sound decisions by everyone. The biggest learning moments came only after I learned to trust patients and families to make their own medical decisions.

Autonomy in Theory and Practice

In medical ethics, we often talk about the four principles: autonomy, beneficence, nonmaleficence and justice. Everyone knows them and understands their significance within the field. All four need to remain in balance with one another, but it is undeniable that the principle of respect for autonomy stands high. Nevertheless, in our modern healthcare system, there is a big difference between knowing the ethical principle and actually putting it into practice. I found that it is one thing to say you value patient autonomy, but it is another to trust patients enough to do it.

I can remember a patient whom I was called to consult on several years ago. I am going to call him Alan. Alan, a young man in his early twenties, was in an accident that left him completely paralyzed. His life depended on medical machines like a ventilator and feeding tube, but more importantly his life depended on others. Without going into too much detail, certain events had happened that left him alone and without his support network and in the care facility where he now lived.

Because of all of this, he came to the hospital where I worked and had one simple request. He wanted us to remove him from his ventilator and allow him to die. This caused a lot of distress among the care team, wondering is that our role, our responsibility, and is it even ethical? Our hospital professed that we always value and respect patient autonomy, but what does that mean when the patient is wanting something that we do not agree with?

• Should we act paternalistically, where we reason that because of our experience and knowledge we know what is better for patients?
• Should we question the patient’s decision-making capacity, reasoning that because he is wanting something that is against medical judgment that he does not understand the decision, and thus we are not required to follow it?
• Or should we trust the patient and trust that the decision he is making is best? Maybe not objectively the best but the best for him.

As the serving clinical ethicist, I went into Alan’s room and talked with him. Or listened mostly. I asked him to tell me about himself, what he liked to do, and what football team was the best. He picked the wrong answer with the Seattle Seahawks. But Alan’s answer to his troublesome life situation seemed right to him. Who was I to try to impose anything other than his capacitated wishes? Alan knew his decision, was committed to it, and trusted himself that it was the right one. And I trusted him to make that decision.

Empathy, Humility and Trust

It can be difficult to write an ethics note supporting a patient’s autonomous decision when it’s one with which I personally disagree. I wished Alan could find a reason to go on living, to find sufficient quality of life despite requisite life supports. But if you truly believe that people should be free to make their own decisions about their lives, their health, and their pursuit of happiness, then you have to remove yourself from the decision and trust people.

I often joke that I believe people should be allowed to make bad decisions. Why? Because they are their personal decisions. Their life. Alan’s body. Alan’s life. And there are few things more essential to a person’s sense of self and happiness than his or her own decisions about his or her health. If a patient has capacity, if the doctor is able, and if the decision is supported by accredited organizations, then it is not my or anyone else’s place to interfere with that person’s health decisions because of our own personal beliefs. I trust people to know themselves and to make decisions that are best for themselves.

In our current political environment, there is a lot of grandstanding regarding what is right and what is wrong, what is ethical and what is not, what is moral and what is going to be the downfall of society. The one thing that I know and have found through experience to be the best approach is to act with empathy, humility and trust. Everyone is unique and living a life that only they can experience. They hold the responsibility to make their own decisions, not me, and this includes decisions about how long their life should be prolonged with medical assistance.

With my education, background and knowledge, I am qualified to have the conversation with them. I am able to discuss the risks and consequences of their decisions. But that is where my expertise should remain. People should be informed about their decisions, but for the most part, they should remain their decisions. As clinical ethicists, I believe it is our responsibility to push back against anyone, either a hospital or a government, that takes personal decisions away from people because they believe they know better. We should use our platform to educate, converse and inform but then respect people to make their own decisions. We expect those we interact with to provide us this respect, including our healthcare team. That is what the principle of respect for autonomy means to me and how I apply it to my work and life.

By Ryan Pferdehirt, D.Bioethics, HEC-C
Vice President of Ethics Services, Center for Practical Bioethics