Today is National Healthcare Decisions Day, and while it is highlighted for only one day each year, the goal is that it will encourage and engage individuals and professionals to have conversations with loved ones and providers about their health care choices. And, that the resources provided throughout this day will guide individuals on how to document these in advance directive documents.
As a clinician who has focused on end-of-life conversations and documentation for many years, one of the most powerful touchstones around this topic was my own personal experience as the voice for my father’s end-of-life journey.
My father was a teacher for over 40 years—it was who he was. His favorite quote was, “For all thy getting, get understanding.” When he had an acute health crisis, the physicians wanted to do a lung biopsy that would require him to be intubated. My father initially stated he did not want that. My mom and sister were present for all these conversations, but as a family we had always known (and talked about) that in health crises I would be the voice for the family. The medical team did not seem to know how to talk with my dad after he said “no” to the treatment plan. I started to ask him questions about his fears and what was behind his “no,” especially knowing that without further testing the chance for treatment was very low.
My father never wanted to be a burden to his family. In his mind, being put on a ventilator to enable this testing could lead to a long, protracted situation that would bring stress to us all. My father also cherished his ability to learn and teach—and being attached to equipment for any length of time would take that all away. As I started the conversation, the medical team did get involved. Together we all decided that he would undergo the procedure, but if the results from the testing did not provide a viable treatment course, we would honor his choice to have the ventilator removed. My parents had their living will and health care power of attorney documents completed at this time but having the additional ability to have this conversation gave us all added peace of mind.
His living will and the conversations we had had over the years shared that he wanted to donate his body to the medical school in Arizona. We made sure that the paperwork was in place if that time came. As we completed that paperwork, he asked us to write in the “application” under reason he made this choice: “I have been a teacher my whole life and, in my death, I want to continue to teach others.”
Despite having had conversations like this for many years of my career, it is truly a different experience when it involves your own family. But I am so grateful that we had these conversations and that as a family we were prepared.
Unfortunately, the news from the biopsy did not provide any additional info that the medical team could use to treat his lung infection. My dad had now been on the ventilator for over 48 hours. My mom, sister and I talked, and we went back to the initial hospital bed conversation with my dad. He had shared very clearly that if there was not a course of action for treatment to remove the ventilator. Although my dad was not able to communicate at this time, I did talk with him about what was happening and that we would honor his wishes and remove the ventilator. We all met with the medical team, and as his medical voice for the decisions he had already made, shared with the team that we wanted to honor his decision to remove the ventilator.
What I can share next is that it was a very peaceful death. My dad did continue being a teacher for many medical students. The words that he wrote on the application for body donation were shared a year later at the memorial service the University of Arizona held for the families of those who had donated their bodies in that past year.
And while being the voice for my dad was a difficult role to step in, I have never questioned the choices because we together as a family spoke about them and were able to not only read about them in his advance directive documents but hear him share them with us directly. There is no greater gift one can have, to hold onto.
So on this National Healthcare Decisions Day, I hope you seek out and ask for the information you need to have conversations with loved ones and document these in a legal advance directive. And in the words of my father, Dr. Marc Ross: Class dismissed.
