A year ago, I was in the midst of preparing a talk for pharmacy students on end of life care, and realized I had never talked with my own father about his advanced directives. I was chagrined that I failed to deal with these matters in my own family and resolved to address them with my father as soon as was “feasible.”
About two weeks later, my father’s girlfriend called to tell me he was in the hospital. He had had 1.5 liters of fluid drained from his left lung and was soon diagnosed with small cell lung cancer. I knew things were serious. Feasible or not, the time was now.
I drove to Sacramento one weekend armed with a set of Go Wish cards designed to help a person sort out what is important to them for their care at the end of life, a booklet on advanced directives from Kaiser and all my knowledge and experience gained through years of caring for my patients. But when I got there, I found it almost impossible to get him to focus and have this conversation in the way I thought we should.
In hindsight, I can see that I believed my knowledge, facts and professional experience would somehow protect me and help me protect my father. In some way, I suppose I spent all those years getting trained so I could do for my father what I was unable to do for my mother 25 years prior. As it turned out, my “safety net” of information made me able to help him interpret what his doctors said and advocate for him through his illness, but it did not provide what I needed (and lacked) most—the ability to communicate well with my father.
I needed to learn to be a daughter to him, to hear what he said and accept it as more important than what I wanted or believed was right. And we both had to learn that the course of illness, indeed the course of life, is beyond our control.
That weekend when we completed his advanced directive, I was stunned when he said he would want CPR if his heart were to stop. It was at that point that I realized he had a very different understanding of his medical condition than I did. He had grasped onto the thin hope of remission or possibly even cure and had no interest (or ability) to discuss what to do if and when the cure was out of reach and death approached. It was as if he could not hold the idea of putting himself through all that suffering from his treatment and simultaneously allow into his mind a consideration of “what if it doesn’t work?” He could discuss the hope of survival and recovery (or preferably the weather, politics and literature), but he could not bear to hear me ask what to do if he got sicker. And I found myself unable to press him on this issue.
The advanced directive form itself was not very helpful. My father did not really understand the ramifications of things like CPR or mechanical ventilation. I thought I was equipped to discuss these things with him, but when I tried, I realized I had the choice of either being his compliant, agreeable daughter as I had always been, or sounding like I was waiting for death to come knocking any minute. I could not bring myself to be the latter, so I reverted to my childhood self.
Several times over the few months between his diagnosis and his death, my father told me that his only goal in life was to “live to be 100.” He had great difficulty accepting how unlikely that was in the face of his medical condition. His oncologist told him that if he did chemotherapy, he could achieve a remission that might prolong his life by a couple of years, but ultimately the cancer would return. How much the doctor told him about the risks of the chemotherapy is unclear to me, but if it was said, my father disregarded it.
Knowing he was terminally ill and getting frailer by the day, I was surprised that he would choose to do the chemo. After all, he and I both saw what it did to my mother. But I have at least achieved enough humility to understand that a human being faced with the prospect of his own death indeed may choose to try to stay alive as long as possible, regardless of the risk. That is what my father chose.
I attempted to have “the conversation” with my dad, but it was much harder than I expected, especially when he gave me answers I did not like. I think many people struggle with their parents choosing less invasive treatment than they want them to, but my experience was the exact opposite. I knew my father was not going to live long, and I did not want him to choose treatment I knew would make him suffer. But those choices were not mine to make.
Although the chemotherapy was successful in shrinking his tumor, it had devastating consequences. He developed profound anemia and pneumonia and ended up hospitalized, then sent to a nursing home and eventually dying, probably from a combination of the cancer and complications of its treatment. In the face of the unavoidable reality of his imminent death, he seemed to trust me to make good choices for him, and I did my best in his last days to be his advocate and ensure his comfort. He was 78, and so did not achieve his goal.
In his last days, when we were finally able to put aside the false hope for longevity, it was a relief to tell him he could choose to wear the oxygen tube or not, to eat anything he wanted or nothing at all. The day before he died he chose to eat pie and a donut for lunch. A friend who was visiting asked him what his favorite kind of donut was, and he said, “the one in front of me.” We talked and laughed, he told me about his second grade teacher and how proud he was of his daughters; we watched the trees outside in the July heat. We may not have achieved my goal of having “the conversation,” but at least we got to have some conversation.