In the United States, we’re not usually comfortable with end-of-life conversations. We avoid them and don’t typically speak of death or dying. I took the photo that you see below during a 45-minute end-of-life conversation between members of my family and my father’s pulmonologist, Dr. Helmi, at Sacred Heart Hospital in Pensacola, Florida. It took place Friday of last week. That’s my dad there in the hospital bed.
I was blown away by the conversation. Dr. Helmi entered the room and address my father, mother, three of my sisters and myself. He took his time, made sure to make my father the primary individual whom he addressed and asked questions of, and didn’t conclude until every question was answered. 45-minutes. I had expected 10-minutes and got so much more.
As a family, we were making the decision to move my father to hospice care, and Dr. Helmi wanted us to understand what that meant and that my father was in full agreement with whatever decision was made. Throughout the conversation he allowed himself to be very human and abandoned any medical/professional detachment. This conversation was about human beings making difficult decisions that revolved around quality of life and how an individual, my father, wants to live out his final days. I noticed that on several occasions, as Dr. Helmi addressed my father, he place his hand upon my dad, emphasizing the human connection.
Ultimately, my father wants to be with my mother for as long as possible, and not separated from her in some hospital unit 35-minutes away from their assisted living community. (My mom has Alzheimer’s and cannot drive to visit dad in the hospital. She also has difficulty navigating telephones. My father has been her primary caregiver for the last several years.) Dad also understands that his condition is only going to get worse and he wants to be made as comfortable as possible. Dad has COPD (Emphysema) and breathing has become extraordinarily difficult. There is nothing that can reverse the gradual progression of the disease. Hospice gives him an option where he can be with my mother, while receiving care in the assisted living community; and the hospice professionals will keep dad as comfortable as possible until the very end.
Just typing the words “until the very end” causes a lump to form in my throat. Nothing about this is easy. It is an emotional time and I’m an emotional guy. And I am my father’s son. However, I am grateful for Dr. Helmi, who was willing to take the time with us and make sure that my father continues to navigate his own ship as we take this journey together. After all, this is his life and he should specify his wishes for his end-of-life scenario.
For families that are going through this, there are some terrific resources. One that I’m familiar with is The Conversation Project – affiliated with the Institute for Healthcare Improvement (IHI). Simply put, The Conversation Project is dedicated to helping people talk about their wishes for end-of-life care. They even have a starter kit that anyone can download to help organize their thoughts about how they want to manage their own end-of-life. Here’s a very short introductory video from Ellen Goodman, co-founder of The Conversation Project: