Do We Really Know What's Best for Our Patients?

Back in the mid 1990’s – early 2000’s, I worked for the organization that coordinated the organ donation and transplant process in Illinois. I met with families who had a loved one in the ICU, often due to an unexpected trauma like a car accident or gunshot wound, and asked them to consider donating that loved one’s organs to save someone else’s life. A tough job, to be sure, but one I found truly rewarding.

While I learned a lot about the medical side of donation- the Glasgow Coma Scale, the importance of vasopressors, and how to do an apnea test- I learned a lot more about human nature; how quickly we form opinions about people and how they’re often completely wrong.

It was a Saturday night in the summer, our busiest time. My pager (yes, pager, it was a long time ago) went off just before midnight and I was sent to Cook County Hospital. The old Cook County Hospital, before the much-prettier Stroger building. There was a 21-year-old man there who had just been transferred from the Cook County jail. The other inmates had quite literally beaten the life out of him.

Now at this point, I’ll tell you that he was African-American and that’s actually relevant because it was our practice to send an African-American staff person to approach African-American families. However, that night, they were either post-call or on another case and I was the next one up. I hadn’t had very many opportunities to work with families who were of a different race and I just wasn’t sure how this was going to go.

I got to the hospital and there in the dimly lit room was his family- about 20 women who were praying and crying and waiting for some definitive news from the doctors. The neurosurgery resident was about to go in and tell the family that despite their best efforts, he was brain dead. He wanted me to go in with him and ask the family about donating his organs. We never like to have those conversations together; it’s best to let people come to terms with what brain dead means and later present donation as a next step, once they’re ready. But that wasn’t going to happen that night.

The resident gathered everyone together at the bedside (another thing we don’t generally like) and broke the news: the young man had died. Immediately, the mother fell to the floor, crying, screaming. The others circled around her, fanning her face, giving her juice, praying. When she came to her feet she said, “I need to go home. Get me out of this hospital. My baby’s dead. I need to get out of here!” Her family was helping her to the door, when the chaplain said, “Wait a moment, this lady has something she wants to ask you.” She looked at me and said, “Go ahead, ask.”

I shot that chaplain a look like I was trying to burn a hole into her, eyes wide and subtly trying to shake my head no. This was clearly not the time. The mother looked at me with unimaginable pain on her face and said, “What? What could you possibly have to ask me? I just need to go home!”

With all the courage I could muster, certain that these women were going to start swinging, I squeaked out the words, “Organ donation. Unique position. Help someone. Maybe?”

I braced myself, ready to hear a stream of obscenities, and started to look for another way out of that room, when the mother got on her feet, looked me right in the face and said, “You’re telling me my boy could save someone’s life?” “Yes, ma’am,” I answered, still not sure what she was going to do.

Suddenly everything changed. The room erupted in cries of, “Hallelujah! Praise Jesus! My baby’s going to save someone’s life!” There was singing, there was hugging, there was laughter through all the tears. The mother signed my consent form and couldn’t wait to hear about how her son’s organs were going to be used to help people.

I was stunned. This was the very last thing I thought would happen.

Imagine what that family’s night would have been like if I had not been pressured by that chaplain, if I’d gone with my gut, decided it wasn’t a good time, and left the hospital labeling this family “Unapproachable.” They would have gone home feeling just as terrible, just as heartbroken. They would have had no hope, nothing to help them get through this awful event. All because I thought I knew what was best for them. By not asking, I would have made the decision for them. And it would have been the wrong decision.

When I think about how we as healthcare workers make decisions for patients – always with the best of intentions – I wonder just how often we end up doing more harm than good. We make assumptions about people and think we’re acting in their best interests when, in fact, we should be letting them make those important decisions for themselves. We can assist, guide, educate, and support but we should never do it for them.