Sunday, October 13, 2013

Knocking on Heaven's Door

There's nothing heavenly about Katy Butler's new book, subtitled The Path to a Better Way of Death. Nevertheless, it's a book that needs to be read and referred to over and over by anyone who hopes for a "good" death and who wants to save their family members from the confusion and frustration of having to make medical decisions under duress.

This book is no easy read but it is painfully honest. You may not like Katy all the time, she may sound selfish sometimes, whiny at others, but like a dog with a bone, she follows every lead (Ms. Butler is a well-known journalist who specializes in health issues) while she tries to help her mother let her long suffering father die.

Unlike families of yore, twenty-first century parents and kids are often bi-coastal, separated by miles, work, and culture. Sadly, not everyone dies in their beds surrounded by their loving families anymore. Katy's folks were in Middletown, Conn. while she was living in California. Her father's troubles began long before the stroke that was the beginning of the end. He had lost an arm during the war while fighting in Italy but had deftly compensated. Katy tells of her family's life, first in South Africa, then in the states where Mr. Butler was a renowned professor, ending his career at Wesleyan. Her mother Valerie was an artist and homemaker extraordinaire and a practitioner of Zen Buddhism.

This book does not skimp in the raw details involved in care taking for an elderly, dementia-plagued patient, one who knows in his lucid moments that he has outlived his body and who the next moment doesn't know who or where he is. Nor does it minimize the pressure and heartbreak for the caretaker.  For six painful years Val fulfills what she sees as her duty to this man she's loved for sixty years but there are times when she believes that she's losing her own mind. That's when she calls Katy.

What's most troubling about this journey we take with the Butlers is that we know  it's relived day after day in homes across America. I really thought that talking about illness and death and how we wish to spend out final days was de rigueur, out in the open, no longer a subject to be squeamish about but that doesn't seem to be the case. You might be accused of being cold hearted or subjecting your loved one to a "death panel." One's religious beliefs or lack thereof can come into play. Word to the wise - be cautious of Catholic hospitals if you believe in letting someone die naturally! Doctors who you would think would be your ally become the enemy.

Katy Butler has done her research and the facts and figures are fascinating and sad. The amount of money made on medical devices built to prolong life is obscene but if you want Medicare to pay for therapy after a stroke you can think again. In Mr. Butler's case it was the pacemaker that was his family's downfall. Like the old Timex watches, it could take a licking and keep on ticking. Even with the quality of Mr. Butler's life, his dead staring eyes, the diapers, the feedings, the inability to function on even the lowest level, the pacemaker kept his heart ticking along perfectly.

 Is it a mercy killing to stop a pacemaker? It certainly can be done but try to find a doctor to do it. Or, was it a crime to put one into the chest of a man who couldn't make a medical decision of such enormity on his own to begin with? Does it constitute being kept alive by artificial means? Did you realize that a DNR order, a living will, etc. can be overruled by feuding families if you don't have a strong advocate?

This book made me once again sit up and take notice. I'm such a believer in being prepared and yet I still haven't made that appointment with the cremation society. For book groups looking for a good non-fiction pick for discussion this should be at the top of the list. For families facing illness and death it could be the catalyst for heart to heart talk. For Katy I'm sure it was a catharsis and I know that her sensitive, informative portrayal of her family's odyssey through the medical world will be a huge help to anyone brave enough to read it.

Meet Katy and hear her in her own words at

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