Conversations That Matter: Stories and Mobiles
“Conversations that matter” are really about stories. So, let me start by telling you a story. A true story. My story.
It was during the fall of 1985. A typical day for me at the medical center seeing inpatients and outpatients dealing with grief issues ranging from just being diagnosed with cancer, to accidents, to grief after a death. I had planned on driving down the next day to a conference in St. Paul, Minnesota, a 2½ hour drive from Duluth where I was living and working. Life was good. My mother had died over thirteen years earlier from cancer and my father was, thank goodness, healthy. He had turned 75 years old the previous December and was living alone in an apartment. I also had a sister and a brother and their children living in the Twin Cities, and again, life was good.
Then the call arrived at the hospital. “Ben, dad's had a major stroke and the doctors don't think he will survive. How soon can you drive down?” Life was, in an instant, no longer “good.” Life had changed. I had changed. My family had changed. In an instant, life became different. Now what? Will my dad survive the stroke over the next few hours, or the next couple of days, and if he does, if he does survive the stroke, what will his quality of life be like? I kept thinking, “He has to survive!” Working in a medical center myself, I knew outcomes after a stroke did not always turn out well and how in an instant life changes for not only the person who had the stroke, but also for his or her entire family and support system. I kept saying to myself in that short time between getting the phone call and getting my car keys, “He will come out of this without any problems... maybe.” I called my wife, shared with her the news, and then proceeded to meet her at our home so we could drive to the Twin Cities immediately. There were no cell phones then, so we made the 2½ hour drive wondering if we would even make it in time before he might die. I had the opportunity to be with my mother in December of 1971 when she was dying. She had a good death with family around, each of us having the opportunity to say what we needed before she died. But this was different. This was unexpected. This really was far from the radar screen.
We arrived at the hospital in St. Paul and immediately went to the ICU. There he was, lying in an ICU bed like all the patients I've worked with in our medical center. Machines and technology all working, or “waiting and ready” to work. But I did notice, at that moment, he was not on a ventilator. ICUs are places full of hightech machines and, supposedly, of miracles, but people in ICUs die at a much higher rate than patients on regular hospital floors.
My father at that moment was able to say he loved me when I told him I was there. I was the lucky one I thought: he was alive at that moment and I had made it before he died. After a few moments in the ICU room with my father, I walked into the waiting room where the rest of my family had been waiting for the past couple of hours hoping he would live, but waiting for him to die.
The waiting room. In my professional work, I'd spent hours and hours in ICU waiting rooms, in pediatric intensive care units, in emergency rooms supporting patients and their loved ones. . . but this time, in this waiting room, it was different. This was not any family and this was not any ICU. This was my family and our waiting room. This was our father, our grandfather, our father-in-law. This was Mr. Independent. This was a man, the youngest of five children raised on a farm, who emigrated to the United States from Canada when he was a teenager, only to have his eldest brother who was caring for him die in a car accident. This was a man who worked hard, very hard: who married, had three children and six grandchildren; who cared for his wife through her cancer and who lived alone, and independently, for the past 14 years.
Today, I can still see that waiting room. All of our family there. All of our family at that moment looking at me—looking at me to help them figure out what to do next. Why me? I knew why me. I was the “grief guy.” I was the one who worked with “these types of families during these types of scenarios.” I was the guy they were now expecting to help them during this difficult time. We talked, and talked, and talked.
But it did not take us very long to make one major decision: because there was no health care directive in those days, we knew we would be the ones to make the decision about what type of care would be provided for him as the minutes and hours rolled by. We, his family who, thank goodness, knew what he always requested from us, needed to tell his physician and health care providers that we did not want any artificial ventilation used, and we wanted him to be allowed to die with dignity. No CPR.
Each of us in that room knew what he wanted regarding end-of-life (EOL) issues. Each of us had heard him tell us his wishes for years after our mother died. “Whatever happens to me do not let them use advanced life support on me... I do not want anything that will diminish my quality of life. You have to promise me you will not let them ventilate me or do anything that will not allow me to die with dignity.” Over and over again he would share these sentiments with each of us. With his children, his grandchildren, and all those close to him. It was clear. We were honored and fortunate to know his wishes. We were all glad we had had “the conversation that mattered.”
It was easily decided in that waiting room we would then not allow the health care team to use a ventilator, and we would also not allow them to use CPR. We all agreed, “He will have a good death, a death he had control over.”
I then called his primary physician who had been at the hospital after his stroke and had since gone home. On the phone I shared how much our family appreciated his relationship with my father and how we had decided not to implement any “heroics” measures at this time, due to my father's condition and the fact he had told us, over and over again, to allow him to die with dignity when the time came, with no technology used to keep him alive. The physician was very kind and compassionate. He shared with me how our father was a truly wonderful man whom the physician had come to appreciate over the years. He also shared how he too had been told by our father “not to use technology when the time comes to keep me alive.” The physician then stated, “I too agree with the decision your family has come to, as it was always your father's wishes.”
The physician then stated, “Since your father can speak a few words at this time, however, you will need to ask a nurse to go into his ICU room and document his wishes when you ask him so we have it charted.” I knew that was the law, as that's what “autonomy” and personal rights were all about. I agreed. I thanked him again for all he had done and thanked him for his relationship and care of our father. I then went to the Family Waiting Room to relay to my family the telephone conversation with the physician and take the next step, to go into his room to ask our father about his wishes so the nurse could document them.
We, his three adult children, walked into his ICU room. I went to the right side of my father's bed, and my sister and brother went to the left side of the bed. The nurse was literally at the foot of the bed with my father's chart in her hand. She had the chart in one hand and her pen in the other. I sat on the bed next to my father and asked him the question we all had talked about, year after year, and we knew what he wanted, but now, sitting on his bed I had to ask him one more time. I indicated the nurse was here and I needed to ask him his wishes about any kind of advanced life support.
I said, “Dad, we have talked about this many times before, but with the nurse here, we need to know from you while you can still speak, what would you like us to do if you continue to go downhill? If you need any type of mechanical life support?” He stated as clear as a bell: “DO ANYTHING YOU CAN TO KEEP ME ALIVE!”
All I could think at that exact instant was: “What?” In one instant we went from allowing him to die with dignity, what he had always talked about, to the prospect
of having him hooked up to machines. It meant our family might have to make more decisions in the future if the goals of care being hoped for did not work. I again repeated in my mind those words...“DO ANYTHING YOU CAN TO KEEP ME ALIVE.” And we did.
He lived for the next 7 years—7 years that were filled with rehab therapists, speech therapists, swallowing concerns, memory loss, new living arrangements, and (at times) hired health care providers. During these years as a family, we learned a great deal about life, about loss, about our father, and about ourselves.
The 7 years after his stroke were not all easy. Many days and weeks were terrible, and my father's quality of life was not the best. But he chose to be alive. His fear, and whatever else he was thinking that very moment in that ICU, we will never understand, but we respected his wishes, and the health care team respected them. He was alert enough to make his own decision, yet not aware of the “unintended consequences” of his decision if he would have had to be ventilated. If he would have needed CPR to “keep him alive.”
These 7 years were not the best of years for our father or our family, but they taught me a great deal about family, about having the EOL discussions early on and often, and also about how life can change in an instant.