He taught me how to live and showed me how to die
| Jan 9, 2012
My father was diagnosed with bilateral metastatic lung cancer in October 1992. Tumors were numerous, although not particularly large; they were in locations, however, that meant surgery was not an option. He was 72 years old and otherwise quite healthy. His choice in dealing with the disease didn’t seem difficult for him, which amazed me; more on that in a moment.
My father and his treatment options came to mind as I read a recent abstract written by Meadow Green, Oncology Market Access analyst, Kantar Health. In her abstract, Ms. Green shared recent research findings regarding increasing “consumerism” associated with cancer treatment. In this instance, the term “consumerism” was used to describe a nascent trend where patients thoughtfully choose to accept, avoid, or abandon treatment – often driven by increased patient cost sharing and the high costs associated with new treatments.
As costs continue to shift to the patient… the consumer (an interesting change in terminology)… I started wondering, “What would I be prepared to pay out of pocket to reach for that cure or extra time, recognizing that ultimately it might cost my family dearly?” That’s a difficult one, isn’t it? I touched on this in a recent blog titled, “Watching the sunset with weeks to live”. The choices are incredibly personal and not to be judged harshly. But we, individually and as a society, are making those choices and judgments.
Maybe it can ultimately be boiled down to consumerism. At diagnosis, my father was generally strong and vital. It was difficult to believe there was anything wrong except for the mild persistent cough and occasional pain. His treatment choice? He took his doctor’s advice and went through his first round of chemotherapy and radiation therapy, but the side effects were terrible. Before his next course of therapy he asked his doctor once again what the ultimate benefit might be of continuing treatment. With the answer he refused any further treatment except palliative care, went home and had four really good months. His last six weeks were difficult.
At the time I lived 1,100 miles away with a young family but was fortunate to be able to visit him several times, including his last week in the hospital. My last memory of my father alive was looking back as I left his hospital room, waving to him one last time and seeing him weakly raise his hand in response while smiling into his oxygen mask. Incredible courage and poise.
Did Dad make a consumer choice? I suppose it can be couched in those terms. He evaluated the impact of a course of therapy through discussion and personal experience, gathered more information, and ultimately made a cost/benefit decision. In his case the cost was personal discomfort, and the benefit was a quality-of-life assessment regarding assumptions of his time remaining and the impact on those around him. To me, talking consumerism in this context seems a rather cold concept and a bit too formulaic. The actual equation is much more complex and certainly varies by individual. While his decision can be couched in consumer terms, what I know of my Dad leads me to believe it was driven more by a quiet acceptance of his ultimate fate. That acceptance enabled a strong and clear personal choice about how he would leave this life enabled in part by little pressure from his loved ones. It was his decision. He made his choice while showing little fear, for he was confident in his destination and comfortable with his decision…amazing.
So consumerism in cancer care? If considered in those terms some 20 years ago the “consumer’s” – my father’s – choices were limited by few truly effective treatment options that included debilitating side effects. With more attractive treatment options now available, perhaps for many it will boil down to financial cost versus benefit rather than side effects. Today’s advances may in some ways complicate the decision but no matter, decisions will ultimately have to be made. May we each be as fortunate as my father, to have the option and ability to choose our final path and the strength to make the right choice for ourselves, our family and even our society, for it seems we spend a lifetime seeking to show in our choices how to live; may we through grace and even braver choices be able to smile and wave in our last days and show how to die.