Clinical Ethics Consultation: How I Make a Difference on the Worst Days in People’s Lives

I often half-jokingly say that someone’s worst day is my only day. This statement may come across as hyperbolic, but it holds more truth than one might think.

The nature of my work as a clinical ethicist – whether working with a patient, a physician, or a nurse – includes involving myself in some of the most difficult situations imaginable, both emotionally and intellectually. Whether the case is a newborn not able to live due to a genetic condition, or a tragic accident that left someone with a severe brain injury and who is likely to never wake up, or someone denied a life-saving intervention due to lack of insurance and document status.

Every situation I have ever been asked to consult on is a grueling experience. Why would anyone seek ethical clarification if the situation was straightforward, clear and uplifting?

With this in mind, I am often asked how I manage the stress and emotional aspects that come with this work. People who are unfamiliar with the work find the idea of it too difficult to consider. But I believe I thrive doing clinical ethics because of the challenges that come with it and the perspective that I bring to it. Instead of thinking about how difficult a situation is, I consider what the situation would be like if I was not involved.

The Guilty Son

I remember a patient who taught me to have this perspective. She was in her late 80s, dying from metastatic cancer and multiple organ failure. She was on the breathing machine and not able to communicate. The medical team was relying on her two children, her son and daughter, to make medical decisions, specifically when to discontinue aggressive measures and allow her to pass away. But the children were not able to make that decision, saying that they wanted to give her more time and were hoping for a miracle.

I was asked to become involved and see if I could “convince” them that a code status of Comfort Measures Only was medically most appropriate. This is a typical but always challenging situation for everyone. I went into the room to introduce myself to the patient’s family. When I was asked why I was there, I explained that my role was to make sure the patient received the most ethically appropriate care. I then asked the question they had been waiting to be asked. “Could you tell me about your mother?”

At that, the family began to share stories about their mother and how they know she is near the end, but they do not know how to accept it. The conversation turned to the topic of guilt with the son telling me that he would never be able to live with the guilt of making the decision to withdraw life-sustaining measures. He said he knew it was the right thing to do and that his sister had been telling him that, but that he still could not live with the guilt of being the one to make that decision.

I told him he could recuse himself from decisions, and the medical team would go forward using his sister as decision-maker and we would then likely withdraw. The tears flowed from his eyes as he said that is what he wanted. From there, the treatment plan was communicated to the physician and the rest of the medical team, the patient was taken off the ventilator, and she passed away a few hours later.

The Better Outcome

When I recall this situation, I remember the apprehension the family had for me in the beginning, the difficulty in coming to a decision together, and the sadness of being there as a family watching their loved one die. And I could remember the emotional struggle that comes with being involved with a family as they go through the worst day of their lives. They clearly loved their mother, and it was difficult to be there as they hoped for another day with her but understood that it would not happen.

Or I could think to myself what would the situation have been like if I had not been involved? The patient would have still died, and the family would have still struggled. My not being there would not have stopped it from happening, but my involvement could do some good. Being there helped the family come to a decision that they felt better about, the patient did not suffer any longer and was given a more peaceful passing, and the family had a better experience with some of the guilt being taken off their shoulders.

It was difficult for me to be there, but because I was there, some good was accomplished. This is what I think about my work. These situations will continue to happen, and while it is sad to be a part of them, it is better to be there and do the good that clinical ethics brings to situations like these.

Healthcare is about caring for others and doing everything you can to support them. It is often difficult and tragic, but we should always remember: Where would people be without us? Death is always difficult and will always be difficult. To make a career that interacts with it so often can be a challenge. But it is important to remember that our work can do good. I did not choose a career focused on death. I choose a career that values the joys of life and am reminded of them every day.

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