By Svetlana Grobman, Public Services Librarian
There are topics many of us avoid discussing, and the end of life is one of them. We know that our time on earth is finite, but most of the time we push that thought away. Recently, though, I came across a book that reminded me that it’s about time I give it serious consideration.
That book is “Being Mortal” (Henry Holt & Company, 2014). It’s author, Atul Gawande, is a surgeon and, as such, he’s witnessed life and death struggles many times, including his father’s. Gawande begins his book with an excerpt from Leo Tolstoy’s novella “The Death of Ivan Ilych.” In it, the main character is terminally ill, but nobody tells him about his imminent death. The doctors discuss his liver as if it has no connection to the rest of him, and his family pretends that he’s just sick and not dying. Yet the patient yearns for acknowledgment and compassion, which he receives only from his servant, Gerasim. Tolstoy published his novella in 1886, but, according to Gawande, not much has changed since then. Some doctors still don’t know how to talk about dying, and many of them see people as a collection of parts that modern medicine can fix — without considering their quality of life. Gawande also questions the ways our society deals with aging, citing the lack of gerontologists and the advantages of multigenerational interaction and palliative care.
Woody Allen is believed to have said, “I don’t want to achieve immortality through my work. I want to achieve it through not dying.” This, of course, is a joke, but it’s also an intended consequence of a healthcare system that values longevity – and perhaps its own financial gain — over everything else. Katy Butler’s book, “Knocking on Heaven’s Door: The Path to a Better Way of Death” (Scribner, 2013), tells the story of her father’s long decline (a result of needless and expensive surgeries and procedures) that turned her elderly mother into his round-the-clock caretaker and, eventually, sped up her own end. According to Butler, more than a third of Medicare patients have surgery in their last year of life, nearly a tenth in the last month of life, and a fifth die in intensive care. You might think that only happens to people who don’t have a do-not-resuscitate order. Unfortunately, even if such an order exists, doctors often push the unprepared relatives to ignore it – creating more suffering for the patients and their families. Butler advocates “reclaiming death from medicine.” In other words, allowing people to die the way they want, with no pressure from anyone. She says, “Things that look heartless to outsiders must sometimes be done out of love.”
“No One Has to Die Alone: Preparing for a Meaningful Death” (Atria Books, 2012) by Dr. Lani Leary, a psychotherapist with 25 years of experience, is a remarkable guide for families on the brink of losing loved ones. The chapters in this book are broken into small pieces that address every step on the journey of dying and grieving — all filled with practical advice, love and compassion. A special consideration is given to children, who, according to the author, grieve differently from adults. Leary concludes her book with this: “My wish for you is that in the end, you feel gratitude rather than grief, and love rather than loss.”
Of course, there are aspects of dying that are neither medical nor psychological. We all have heard stories about heirs fighting for their inheritance or relatives not knowing what to do next. Susan Dolan’s book, “The End of Life Advisor: Personal, Legal, and Medical Considerations for a Peaceful, Dignified Death” (Kaplan Pub., 2013) provides a dispassionate list of things everybody must consider: end-of-life care, do-not-resuscitate orders, hospice, final arrangements and legal issues. Dolan also provides resources for healthcare and hospice care professionals, a documents checklist and advice about planning memorial services.
I’d like to conclude this article with Will Schwalbe’s book “The End of Your Life Book Club” (Vintage Books, 2013). Mary Anne Schwalbe was diagnosed with pancreatic cancer in 2007, but she lived for almost two years afterwards. During that time, Schwalbe and his mother read the same books and discussed them later. Yet Schwalbe’s story is more than a book-club-memoir. We discover what an amazing person Mary was, how dedicated she was to the plight of refugees all over the world, and how, to her dying day, she wanted to fight for improvements in our healthcare system. We also learn how to communicate with the mortally ill, and we learn about the importance of literature. “Mom taught me that you can make a difference in the world and that books really do matter… books can be how we get closer to each other, and stay close, even after one of [us] has died.”
Literary Links, compiled by library staff, appears monthly in the Ovation section of the Columbia Daily Tribune. Each article contains a short list of books on a timely topic.