Being Mortal

It's easy to be defiant and even cavalier in the face of a life-threatening disease when you're not experiencing any nasty symptoms and the event horizon is years or decades in the future. Moreover, there is something strangely comforting in knowing how you will die. Think about it. Notwithstanding doing something utterly stupid to hasten that life-extinguishing event, how would such knowledge change the way you live? I call it the Merlin Effect, after the wizard-like character in King Arthur legends.

Merlin, or Taliesin as he was sometimes called, was King Arthur's closest and most trusted adviser, not unlike Jafar in Disney's Aladdin, but with a far more constructive and lovable personae. One of the most remarkable characteristics Merlin possessed was a vision of his own death; Merlin knew in advance how he was going to die, but not when. It's easy to understand how such knowledge can be frightening but can you also grasp how it may be quite liberating? Short of self-annihilation for the express purpose of thwarting such mortal foreknowledge, one could live a life of near impunity. The Merlin Effect may bring a certain clarity of thought for some while in others it may bring paranoia, desperation, depression and a dearth of other dreary demeanors. For me it was the former, ergo this blog. Alas, it seems that the Merlin effect may not apply to me after all since learning that my own mortality may not be a result of LGLL. Regardless, it provides me with a perfect segue into the subject of human mortality along with its purpose and effects on our vitality, especially during our last days.

Being Mortal is a #1 national best-selling book by Atul Gawande, a practicing surgeon and author of several books. I heard a review of Being Mortal on an NPR program this past fall and, upon request, Mari Jo gave it to me for Christmas. Once I began, I read it in three consecutive days. In general, the book is about choices and how to maintain your ability to choose while struggling with your imminent mortality. It is not a self-help book or instruction manual on how to manage end-of-life decisions but a poignant treatise, punctuated by real end-of-life situations personally experienced by the author. Gawande delivers salient points about how the medical profession unintentionally is attempting to disenfranchise us from our mortality, that God-given gift, the great equalizer. He admits to and cites examples of his own awkwardness at managing end-of-life situations, with his patients as well as his own father. Most importantly he describes alternative ways some physicians interact with dying patients to understand better what they want from their last days as opposed to simply giving them treatment options. One memorable example is of a man who said he wanted to be able to watch football games on TV and eat ice cream during his last days. Consequently, instead of suggesting a treatment regimen of chemo-therapy that would have made him unable to enjoy food of any kind, he was referred to Hospice by his physician so that he could be at home with his family and indulge himself in all 31 flavors of Baskin Robbins ice cream if he so chose.

My first and only experience with Hospice was with Mari Jo's dad, Aaron Defferding who died on September 17, 2008. Although his time there was short, the human kindness, dignity and grace shown by all who attended him made a Hospice disciple out of me. Mari Jo and I visit the Kate B. Reynolds Hospice and Palliative Care Center in Winston-Salem at least once each year to remember Aaron's time there and to touch the plaque we had placed on the wall in honor of him and Mari Jo's mom, Harriet, also a Hospice patient several years earlier. Sometimes we take meals for patient's families and staff and sometimes we make monetary donations. Hospice is our choice for end-of-life so children take note.

Being Mortal can be a hard book to read, especially if you have ever directly witnessed the death of someone close to you. The book's conclusion instantly transported me back to the hospital room where Joe and I awaited the death of our dad on January 2, 2010. A heart-rending grief washed over me like a tsunami and tumbled me to the abyss of despair as I burst into tears at the description of the passing of Gawande's father. Once consoled by Mari Jo, I told her of its affect on me and how I regretted that my dad had not been able to receive Hospice care instead of dying in a hospital room, a cold, clinical, inhospitable cubicle designed for and attended by people who are trained only to do no harm. I personally think my dad's quality of life would have been much better during those last days had he been in Hospice.

After reading the sobering end-of-life accounts in Being Mortal, and despite my defiance and cavalier attitude now, I must conclude that my fragile, stoic facade will likely crumble as I begin to experience the intense physical and emotional pain that Gawande's patients did and, as a result, I will beg for God's mercy, pain relieving, stupor-inducing drugs, and that final sleep from which we never awaken. In the meantime, I will dust off my advanced health care directive and make sure it clearly articulates my end-of-life choices and attempts to minimize any potentially regrettable decisions my family could be faced with when that time comes.