If you have ever pondered the questions of the limits of medicine in its approach to life and ethics, the books I curated below are for you. They will help you understand the moral and ethical complexities involved in turning medicine into an inhumane tool to prolong dying people’s suffering and pain.
You will learn about harrowing stories of how high technology medicine robbed people of decent and dignified death at home among family and loved ones; and how death for some is better than life.
A central theme that runs throughout these books is that modern medicine’s motto ‘save life at all costs’ does not always fare well especially with seriously ill people who are approaching their end of life. High technology medicine, as several leading doctors and palliative care physicians demonstrated, can sometimes condemn these people to a harsh and inhuman death, prolonging their suffering and that of the people around them.
On a personal level, I can relate to many of the stories in these books. I cried and cried and cried reading them because each one of them would remind me of the numerous tragic stories that happened to us with mom in different ICUs.
As of writing these lines, mom has been in a coma for almost three years because of a cerebral injury. I am her principal caregiver. I do everything for her from tube feeding her to changing her diapers and cleaning her. Besides nurses that would check on her at home, my sisters (3) and brothers (2) take turns helping with everything. The least I can say about this ordeal is that it is a nightmare, a REAL nightmare.
I thought I knew what the word suffering means but I was wrong. The word has a complete meaning now for me, a meaning that I live every day. Mom was a central figure in our life. We would turn to her for everything. She was hilarious, full of life, and loved people and she suddenly disappeared.
All that is left of her is her frail body. She is only 67. And although doctors told us it is over but deep inside me I feel it is not. A miracle? Maybe. But I don’t think mom would leave without saying goodbye. I also hope that one day I can collect myself and be strong enough to write a book about her trauma and tell her story to the world.
Below are 7 of the best books on death and grief I highly recommend to anyone experience loss and sadness.
1. Knocking on Heaven’s Door: The Path to a Better Way of Death, by Katy Butler
In this gripping memoir, author Katy Butler recounts her parents’ struggle to overcome the forces in the medical establishment that deny them the right to a ‘good death’. Her father had a crippling stroke at the age of seventy nine which severely impacted his mobility and speech. Doctors placed a pacemaker to help his heart but life became miserable as dementia took hold of him leading him to question the whole purpose of life.
The daughter and mother fought a moral struggle as doctors refused to disable the pacemaker thus prolonging his suffering and their. Only when Butler started making sense of the whole ordeal that her mother became fatally sick and instead of taking the recommended heart surgery she refused and welcomingly embraced her death.
As she recounts her parent’s trauma and that of many other people she included in the book, Butler highlights “what happens when our terror of death collides with the technological imperatives of medicine. Her provocative thesis is that modern medicine, in its pursuit of maximum longevity, often creates more suffering than it prevents.”
2. The Art of Dying Well, Katy Butler
In this book, Butler elaborates on the theme she discussed in Knowing on Heaven’s Door. She further explained how high technology medicine is prolonging the suffering of the fatally ill and how it condemns them to ‘agonizing deaths’. I have already written a post about this book which you can read in Review of the Art of Dying Well.
3. Being Mortal, by Dr. Atul Gawande
In Being Mortal, Dr Atul Gawande tackles head-on the issue of modern medicine and how its goals for saving lives at all costs can sometimes turn people’s end of life experiences into harrowing nightmares. “Gawande offers examples of freer, more socially fulfilling models for assisting the infirm and dependent elderly, and he explores the varieties of hospice care to demonstrate that a person’s last weeks or months may be rich and dignified.”
4. The Conversation: A Revolutionary Plan for End-of-Life Care, by Angelo E. Volandes
The central argument in the Conversation is that people who are seriously sick and approaching their death need a good ending, one that take place at home among family and not in the gloomy ICU chambers. Modern medicine, as Dr. Angelo E. Vokandes argues, can sometimes deny people this comfortable closure.
“Through the stories of seven patients and seven very different end-of-life experiences, he demonstrates that what people with a serious illness, who are approaching the end of their lives, need most is not new technologies but one simple thing: The Conversation.”
5. The Best Care Possible: A Physician’s Quest to Transform Care Through the End of Life, by Ira Byock
The Best Care Possible is another good book on the intricacies of medicine and ethics and how fatally sick people need humane care away from the somber exigencies of the high tech health care system.
Dr. Ira Byock, a palliative-care physician, argues (convincingly) that in order to “ensure the best possible care for those we love-and eventually ourselves- we must not only remake our healthcare system, we must also move past our cultural aversion to talking about death and acknowledge the fact of mortality once and for all.”
5. Every Patient Tells a Story: Medical Mysteries and the Art of Diagnosis, by Lisa Sanders
In Every Patient Tells a Story, Yale School of Medicine Dr. Lisa Sanders, takes readers on a journey into the complex processes of medical diagnosis, discussing the different problems facing doctors as they carry out their diagnostic work, and showing how in spite of all the high tech knowledge we have, diagnostic errors are still made and wrong medical decisions are still taken.
“Through dramatic stories of patients with baffling symptoms, Sanders portrays the absolute necessity and surprising difficulties of getting the patient’s story, the challenges of the physical exam, the pitfalls of doctor-to-doctor communication, the vagaries of tests, and the near calamity of diagnostic errors.
In ”Every Patient Tells a Story, Dr. Sanders chronicles the real-life drama of doctors solving these difficult medical mysteries that not only illustrate the art and science of diagnosis, but often save the patients’ lives.”
6. Complications: A Surgeon’s Notes on an Imperfect Science, by Dr. Atul Gawande
In Complications, Dr Atul Gawande reveals the paradoxes and limits of modern medicine and explains through riveting stories of patients and doctors how deadly medical mistakes are made and how even the best surgeons can make them.
“He also shows us what happens when medicine comes up against the inexplicable: an architect with incapacitating back pain for which there is no physical cause; a young woman with nausea that won’t go away; a television newscaster whose blushing is so severe that she cannot do her job. Gawande offers a richly detailed portrait of the people and the science, even as he tackles the paradoxes and imperfections inherent in caring for human lives.”
7. I Am, I Am, I Am: Seventeen Brushes with Death, by Maggie O’Farrell
In this compelling memoir, novelist Maggie O’Farrell recounts her 17 encounters with death and what she has learned from them all. From her childhood illness that confined her to bed for a year, to the encounter with a weird man on a remote area, and her fight to save her daughter from her condition that ‘leaves her unimaginably vulnerable to life’s myriad dangers’, O’Farrell makes a gripping narrative of her life story, one that will leave you in awe and admiration of her perseverance and resilience.