In October 2010 I first wrote about the journey of my elderly father through declining health and the healthcare maze. In my blog post titled A Practical Man and Modern Medicine this is how I started his/our story:
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?
Almost three years later I still don’t know what to do with this information. I have discovered the healthcare system to be even more bewildering and capricious than I had imagined. I last wrote about my father this past fall in the post Transitions (October 22, 2012), when I was back in Virginia helping him survive the rough crossings between four different health care settings in six weeks—the last one being the calmest and sanest of all—home hospice. My father was weak, oxygen-dependent, and had advanced wasting from end-stage congestive heart failure. His cardiologist didn’t expect him to live much past Christmas. The day after hospice started my father used his walker to get from his hospital bed in the living room to the studio in the back of the house. Once there he strapped himself into his recumbent exercise bicycle and started “getting back into shape again.” We all thought he was nuts, but decided if he wanted to die while riding his bike off into the sunset of the studio that was his choice.
Since then he has confounded his cardiologists who say that by all objective measures my father should be so physically disabled as to be bed bound. Instead, he once again ‘graduated’ out of home hospice and as I write this he is riding his ‘real’ bicycle off into the ‘real’ sunset on a beach in Florida to meet up with friends for Happy Hour, sans alcohol for my teetotaler father. The photo to prove it was taken by my niece who is his caregiver for a few weeks.
Clearly my father’s story is not over, even though he has finished writing his memoir in barely decipherable handwriting on ten legal pads, which are in the mail to me. My father wants me to transcribe them and make into a book. “After all, this whole memoir business was your idea,” he said to me. He wants to proofread the final draft to make sure I didn’t change any of his words.
Last fall I wrote an essay titled Home Death about my experiences with the healthcare system, as I tried to uphold my role as health care advocate and proxy for my father. It was published recently in Johns Hopkins Public Health: The Magazine of the Johns Hopkins Bloomberg School of Public Health, Special Issue 2013. You can read it here.