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Hope be not proud

Posted Aug 13 2010 6:23pm
I started to write this post to offer my appreciation to Kevin, MD, for posting a chapter of ePatient Dave's Laugh, Sing, and Eat Like a Pig, and for Dave and his publisher for graciously allowing anybody to read the entire chapter without having to buy the book. The story is compelling, and this particular chapter is especially so.

But that was before I read the exchange of comments on Kevin's blog. At least one commenter took offense at her perception that Dave was glorifying the role of hope in the treatment of cancer, and in so doing might be disparaging people who do not experience that hope, suggesting that they are somehow weak and inadequate. As you read through Dave's response and that of other observers, it becomes clear that he certainly did not intend to suggest such a conclusion. Indeed, by comment #15 or so, the exchange had gone on sufficiently long that the participants had come to a rapprochement on the issue, in part because of the respect they showed for each other's opinion.

During this last 8+ years that I have been CEO of a hospital, I have had occasion to talk to lots of people with cancer. Truthfully, I had never done so before because I was too uncomfortable to do it. To this day, for example, I regret not spending time with my good friend Leah as she was dying from breast cancer about 20 years ago. As I suspect is the case for many of us, I just found it too scary and uncomfortable. I now have started to appreciate what I lost as a result, and I also have learned how helpful I could have been.

Each person faces cancer in his or her own way. There is nothing right or wrong about the different approaches people take. Denial or acceptance is not a statement about someone's character. Having hope or not does not always come from an explicit decision to be hopeful; it often just happens one way or the other. Likewise, the spectrum from stoicism and strength to dependence and, yes, even weakness, are reactions that are unpredictable until you are actually faced with the disease. Too, how one feels can change over time -- whether minute to minute, day to day, or year to year. So, one thing I have learned is not to be judgmental about how a person responds to cancer.

The other thing I have learned, I think, is how to be helpful. I'm not talking about bringing over dinner or giving someone a ride to chemotherapy or other such logistical support -- although that is helpful. No, I have learned how to have a conversation with a cancer patient and hear what he or she needs to tell me. I have learned how to answer and, equally important, when not to answer. I have learned that a lot of the protective layers that we include in our day-to-day conversations fall away when someone knows that he or she might be dying.

I always wondered how people could choose to be oncologists. I used to imagine that it would be the most depressing field of medicine, in that a fairly high percentage of the patients die of their disease. I have come to understand the happiness that a doctor feels when he or she helps a patient beat the disease outright or gain several more years of life. But, I have also come to understand the deep connection that can occur between an oncologist and a patient, especially when the disease is terminal.

Several years ago, one of our beloved hospital employees lay dying with cancer. I went to visit her at the bedside and hold her hand. We talked quietly. She said she was concerned about how her children and grandchildren would do without her. Deeply religious, she was really wondering how they would choose to live their lives. I listened and then I said, "You have to trust that you have given them an upbringing that will lead them the right way. Now, it's time for you to stop worrying about them and just think about yourself." She sighed and smiled and said, "I suppose you are right," and I could see her body relax right then and there. What a gift we had given each other in that moment.

So, now I want to express my appreciation to Kevin, Dave, and Dave's publisher for giving us a chance to eavesdrop on one of those conversations. I want to thank them for giving us a chance just to witness first hand the bared souls of people who have faced this disease in whatever way is best suited to them.
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