My Dad decided against cardiac surgery. He decided this in the hospital after frank discussions with his cardiologist, who has treated my Dad for 15 years. Dad trusts him. Within two days of taking Dad home from the hospital, the cardiac surgeon had called/talked with him once about surgery, and then he got two additional phone calls from the surgeon’s office confirming follow-up appointments with them. At first Dad interpreted these calls as proof that perhaps he should have surgery after all—that the surgeon’s thought he was a good candidate for heart valve replacement. He admitted to being confused as to what to think. I tried to not show my frustration at the health care system and told him he should go to the appointment if he needed more information. He thought about it through lunch and then told me “I don’t want to open that up again.” He got yet another automated telephone message the next day confirming his cardiac surgery appointment. By that time he had already told at least three of their office staff that he wished to cancel and didn’t want surgery. I explained that the medical system has a life of its own and just won’t take ‘no’ for an answer.
Today on the phone, my 87-year-old father asked me to be his patient advocate. He is facing tough health care decisions over the condition of his heart, and is scheduled for surgery in a week. He is a practical man, bright, charming, and articulate, with no cognitive deficits that I can detect. He told me where his Living Will and Advanced Directives are, where he wants his body donated for medical research, and what to do when his CD matures (he’ll be in surgery) so that he can roll it over to a money market account. He says he needs access to the money for his after-hospital care, in case he survives surgery. I am thinking about the health policy issues within all of this: 1) heart failure accounts for the largest portion of Medicare expenditures, 2) none of his doctors have talked with him about what all is involved with this surgery, or what quality and quantity of life he can hope for afterward, and 3) home care provided by family members is not well supported (financially and otherwise) in our country. As his daughter and as a family member embedded in the health care system, what do I do with this information?
Perhaps there is a story here for possible future submission to Health Affair’s Narrative Matters (http://www.healthaffairs.org/NM.php). (Note: if you are interested in health policy and narrative and don’t know about this already, it is a wonderful non-technical resource). I even look up the submission guidelines. Coping comes in strange forms for someone like me who has always been a compulsive writer. I take some comfort in having read today that Roald Dahl did something similar when his favorite daughter Olivia died of complications from measles. He supposedly wrote out a very dispassionate account of the events surrounding her death. He wrote this in a school notebook and stored it in a desk drawer in his writer’s hut. (I do realize the important difference here between public and private musings, a topic for a future blog entry). Maybe this is a heavy topic to start out a blog on. But it is real and it is in line with the sorts of things I want to deal with in Medical Margins: the intersection of story/narrative and health care, and of people and topics that are marginalized. My Dad agrees to have parts of his story told here. As I said, he is a practical man.