A book that could change what you think about living and dying

On Saturday night I finished reading an incredible book that I can’t get out of my head. It has had a profound effect on my convictions about aging, death, and how we make decisions in this age of supercharged health technology. The book is Being Mortal: Medicine and What Matters in the End by Atul Gawande. Dr. Gawande teaches at Harvard Medical School and is a practicing surgeon at Brigham and Women’s Hospital in Boston. I’m not loaning my copy of the book to anyone. Ever. This book is staying on my bookshelf. It’s that important.

About halfway through the book I realized that Dr. Gawande is the author of an article I read in the New Yorker magazine several years ago. The article touched on several of the same issues discussed in the book. I read the article over and over again, just to make sure I got it. Dr. Gawande opened my eyes to the fact that medical professionals have bags of tricks at their disposal to extend life for even the worst diseases with the most dire prognoses. Doctors want success, they want to give their patients hope, they want to use everything they have available, and they don’t want their patients to die. But often these treatments make patients much sicker because of their horrific side effects. So the patients spend their final days in agony, paying a high price for very little time on this Earth. And often the treatments don’t even buy them any time. In the long run, death is inevitable. Sorry but true. But when facing death we have the right to make some decisions about our health care.

The article is entitled Letting Go from the August 2010 New Yorker. It’s available online at http://www.newyorker.com/magazine/2010/08/02/letting-go-2.

So after finishing the book, I wrote an e-mail to Dr. Gawande, thanking him for writing the book and explaining why I am so grateful to him. Rather than reiterate my story, I’m copying my letter to Dr. Gawande here.

Dear Dr. Gawande—

 

In my mind I’m going through words, trying to come up with a beginning to this letter that doesn’t start with the word “I”. But it’s not important what words I use, but rather that I convey to you what is in my mind and heart. 

I want to tell you how deeply grateful I am for your work and, if you will give me a few minutes, I would like to tell you a little story, just a snippet from my life.

Four years ago my beloved father died at the age of 88. He was almost completely blind from macular degeneration and he had developed heart problems. Despite the blindness, he had been incredibly independent and energetic until the heart disease began to take its toll. He had a couple of angioplasty procedures and eventually his cardiologist told him that he needed to have a heart valve replaced. Washington Hospital Center, where he was being treated, had a supposedly wonderful new valve replacement procedure that did not involve the full open-heart surgery. The only problem was that my father’s valve problem was not “bad enough” to qualify for the surgery. His cardiologist advised him that his heart would soon fail with surgery, so after a lot of thought and prayer, my father decided to go for it and had open-heart surgery. According to the doctor the surgery was a great success. But my father never left the hospital. He developed an infection that raced through his body. He was put into the ICU, on a ventilator, in a medically induced coma. After a number of days, brain activity ceased, and he was disconnected from the devices and died.

Less than a year after my father’s death, my little brother was shot in the back at point-blank range by his next-door neighbor. The neighbor was angry that my brother’s dog had come into his yard. There is nothing medical science could have done in that horrible situation.

 

Several months after my brother’s murder, his son was in a near-fatal car wreck. He was flown to the shock-trauma unit at the University of Maryland. He was in a coma for three months and had a number of broken bones and other injuries. But, to the amazement of everyone, Jasen survived.

 

Just after my father’s death, Mike, my dear friend and music partner was diagnosed with mesothelioma. He went to Johns Hopkins to see one of the country’s top mesothelioma experts. Mike had chemotherapy, followed by surgery to remove his right lung, followed by intense radiation. This doesn’t even include all the biopsies and lung drainage procedures he endured.

 

Mike was an incredible guy—strong and independent. He was serious about his hobbies—training horses and playing guitar. He only worked a day job to support his other interests. He had the most quiet, fierce determination of anyone I’ve ever known. For example, when he was a teenager he decided he wanted to learn how to pole vault. He came from a family of very modest means. So he cleared a place in the woods, somehow made himself a pole, and taught himself how to pole vault. He ended up holding the South Carolina state record for the pole vault his senior year in high school.

 

He worked in a factory for a year between high school and college to earn money for his college tuition. It was there that he was exposed to the asbestos that killed him 40 years later. He died about 14 months after the mesothelioma diagnosis.

So in a little over a year’s time I lost my father, my brother, and my dear friend Mike.

 

But here’s where you come in to the picture.

 

I have a master’s degree in counseling psychology and did my graduate internship in a senior residence. So for a number of years I have been following the growth of hospice care with great interest. I tried to get my father to enter hospice and he did at first, but when he thought there was some hope that he could scrape a few more years out of his life, he withdrew from hospice and had the open-heart surgery. We now know how that turned out.

So when Mike’s health situation developed and began on its horrific predictable path, I began to wonder how to broach the topic of hospice care with him. I read an article in the New Yorker entitled Letting Go that made a huge impression on me and verified everything I knew from life experiences with the medical system and quality of life issues. With fear and trepidation I gently discussed it with Mike and gave him the article. It took him months to read it, but when he finally did read it, it transformed his state of mind. He got it. He knew he couldn’t change the hand that fate had dealt him, but he could still make decisions about what mattered to him about the time he had left. He was brave and independent throughout his life and he realized that he could face death the same way.

So when the oncologists offered him yet another round of an experimental chemotherapy, he turned it down. He lived about 5 months after that. Predictably, there was a lot of medical intervention controlling the pain and symptoms, but he was coherent until nearly the end. He spent time with his daughters, friends, and me. He died in a nursing home, under the care of hospice.

 

Mike told me that his final year was the worst year of his life, but also the best—because he knew how much he was loved. The last time I saw him, he was fading in and out of consciousness. I said to him, “Haven’t we just had the best time?” And he responded, “Why stop now?” He told me he loved me and I told him I loved him. That was it.

His ashes were thrown on the Gettysburg battlefield, at the exact spot where the 20^th Maine pushed back the Confederate forces, the spot they call “the end of the line.” And his death certificate lists his occupation as “cowboy”—he would have loved that.

Last night I finished reading your book Being Mortal. And in the course of reading the book I realized that you were the one who wrote the article in the New Yorker that had such a profound influence on the final months of a cowboy named Mike Ball.

I am sorry that you lost your father—I wish I had known him. He must have been incredibly proud of you.

Thank you, Dr. Gawande, for your work, for your heart, and for your clear writing. I am so grateful to you for having the compassion and the courage to say what you have said. I thank God for giving you that brilliant mind and that warm heart. You have made a difference in the lives of people you have never met. Thank you.

Yours truly,