January 1, 2016

End-Of-Life Issues Dominated My Blog Posts in 2015 and No Doubt Will Do the Same in 2016

Alcoholism and homosexuality are topics people avoided talking about in the past, but we now openly discuss them with resulting benefits to our health and well-being. These days, people avoid talking about death and dying, and our doctors show that same reluctance. Thankfully, we've seen major progress in this area during 2015.

Here are some examples from this past year's posts:
  • The most significant health book of the year for me was Being Mortal, by surgeon and author Atul Gawande. He describes in vivid, heart-wrenching detail the final days of patients who are often in such denial of their imminent deaths that they, or their families, demand futile lifesaving measures. Meanwhile, his own profession treats aging, frailty, and death as if they were simply clinical problems to solve. I also wrote about Gawande's article in the New Yorker concerning health care directives, another favorite topic of mine this year. Gawande recommends creating these documents to avoid the avalanche of unnecessary medical care that harms patients physically and financially.
  • It was Oliver Sacks who most riveted my attention on these issues this year. A neurologist, he's the author of many books, including Awakenings and The Man Who Mistook His Wife for a Hat. In Febuary, I posted the text of the op-ed piece he wrote in the New York Times after learning his cancer had metastasized. Later, I wrote about his memoir On the Move, in which he discusses for the first time his struggles coming to terms with his homosexuality. Here's one quote from the author:
"Although it’s up to me as a neurologist to diagnose the disease and to think in therapeutic terms, I always want to address the person as much as the disease, and I’m very glad my own doctor feels similarly. I’m not just a case to him, I’m a person responding to the situation. So I somehow sit between the biology and the humanist point of view."
I'm looking for care providers who take this approach.
Talking About Death Can Make You Happy
A friend just sent  me this link to a BBC report on how people in Bhutan, which is rated one of the happiest countries in the world, believe that talking about death at least once a day will generate happiness.

I Plan To Continue this Discussion in 2016
As we head into the new year, I figure I'm likely to make my own final exit in the next year or two. If and when my Parkinson's disease brings me close to being fully immobilized, I'll arrange my own final exit. Similarly, if I should join the 50 percent or more of Parkinson's patients who develop some form of dementia (which to me seems increasingly likely), I again plan to arrange an early exit timed to occur when I'm on the verge of no longer being able to communicate as John Schappi.

So, the end of life will continue to be a major topic in 2016. Those books by Gawande and Sacks were important in this year's posts. In the coming year's posts, I predict you'll hear lots of references to a book that is now only in draft version. Here's the tentative title:

“Choose life! Sharing an Unexpected Cancer Journey with a Long-Lost Friend."

I'm privileged to have been given access to this draft, which is based on an extensive email exchange shared between two of my closest friends. One -- Loene Trubkin -- had been an outside (i.e. non-employee) member of BNA's board of directors. She has been dealing with cancer for years and has undergone extensive chemo treatments. The other correspondent -- Hugh Yarrington -- had an interesting career at BNA before becoming the chief executive at BNA's major competitor CCH, later acquired by Wolters Kluwer where he became one of their top executives. Hugh had always enjoyed excellent health and was stunned when he was diagnosed with multiple myeloma and told he could expect to live 12-18 more months.

Hugh quickly emailed Loene for advice, which started an exchange that became big enough to fill a book or two. Leone selected and lightly edited the emails in her draft book.

You probably think this material sounds depressing and/or boring. Not so. With the withering away of my attention span these days, I have difficulty staying with a book or magazine article. But I've been mesmerized by this book and can't wait to get back to it as soon as I finish this post. I find it more uplifting than depressing.

Their dialogue has given me a lot to think about. Just one example: Hugh was a longtime advocate for a patient's right to arrange his final exit if the alternative involved drawn-out, extensive, unpleasant medical treatment. But Hugh didn't make the choice he'd advocated at the end of his own life. I'm waiting to see if he discusses his choice with Loene. In any event, his end-of-life story makes me less certain that I'll carry out my own early exit plans.

Hugh died on November 12, 2012. I published a blog post with excerpts from Hugh's emails to me, but Loene's contributions in their email exchanges really make their dialogue rich and rewarding.

I hope some publisher is smart enough to get this book out to the wider audience it deserves.


Jackie Blanchard said...

I look forward to accompanying you on this exploratory journey, John.

Anna said...

I'll be there, too, John.

You wrote:
"I've spent most of my life following the precept that 'anything worth doing is worth overdoing.'"
This is so amusing to me, because this is exactly how my late beloved, a person with PD symptoms, including dementia, lived his life. He was an engineer and a great storyteller, so you can just imagine how these played out over his "overdoing" approach to life!

Much love and deep gratitude to you, John, for showing us how to be fully alive until the last possible moment.