Below is an insightful review of an important book. We agree with the reviewer’s recommendation that this book be read by all physicians. The book offers a somewhat harsh indictment of the medical profession’s approach to the inevitable end-of-life. While perhaps not fully justified, the message deserves to be heard and addressed by us. In addition, the author discusses the means to a “better way of death,” offering a useful map through the labyrinth of end-of-life care and decisions for patients and their relatives and friends, with notes on the art of dying, and provides a list of useful resources. Thus, it can be of benefit to us in our professional lives and also in our personal lives.
—The Section Coeditors
In the opening paragraph of her prologue, Katy Butler captured my interest when she wrote “On an autumn day in 2007, while I was visiting from California, my mother made a request I both dreaded and longed to fulfill…her voice was low. She put a hand on my arm. ‘Please help me get your father’s pacemaker turned off,’ she said. I met her eyes, and my heart knocked.”
After some background information, Ms. Butler then writes “I loved my father, even as he was: miserable, damaged, and nearly incommunicado. I loved my mother and wanted her to have at least a chance at a happy widowhood. I felt like my father’s executioner, and that I had no choice. I met my mother’s eyes and said yes.”
What follows over the course of the remainder of the book is a chronicle of the struggle of Katy Butler and her mother to enlist the aid of the medical establishment to allow her father to die a natural death. Ms. Butler’s father, who was in apparent good health, suffered a significant stroke on November 13, 2001, at the age of 79 leaving him disabled on the side of his one functional arm (having lost his other arm in World War II). This is important because this happened only 13 years ago in the 21st century. Many senior citizens suffer unexpected strokes, even severe ones, but manage with appropriate rehabilitation to regain significant quality to their lives. Katy Butler’s father also initially started to make some progress.
But 1 year later while “gravely disabled yet clear-minded enough to know it—he (Ms. Butler’s father) was outfitted with a pacemaker in a moment of hurry and hope.” The circumstances leading up to the decision to insert a pacemaker for Mr. Butler and the subsequent consequences of that decision form the body of the text. Ms. Butler reveals to us the impact that the declining health of a loved one has on the loved one (her father) and more importantly on the caregivers. Strained relationships among family members that existed before the catastrophic medical event can become more strained after, or can lead to reconciliation, or to a roller coaster ride racing through all levels of emotion.
Ms. Butler uses the story of her father’s prolonged dying process to castigate the medical profession, the medical technology companies, the pharmaceutical industries, and the medical insurance carriers. As Jennings and his associates concluded “…too many Americans die unnecessarily bad deaths—deaths with inadequate palliative support, inadequate compassion, and inadequate human presence and witness. These deaths are preceded by a dying marked by fear, anxiety, loneliness, and isolation; deaths that efface dignity and deny individual self-control and choice.”1
In their article on the subject of care of the dying, Cowley et al.2 conclude that “…Despite the miraculous advances in medical theory and medical practice, the ethics surrounding medical care for the dying are more troubling today than they were in ancient Athens at the time of Plato. In classical antiquity, the primary concerns were for health and living well. The ‘Middle Ages’ saw the emergence of the principle of sanctity of life. To these basic ideals, the ‘Renaissance’ and the ‘Enlightenment’ added the aspiration to prolong life. Finally, in the 20th century, modern science has rendered this aspiration a reality of unclear merit.”
Katy Butler’s story takes us into the 21st century “…where barriers to decision making center on misunderstandings of the legal aspects of withholding and withdrawing life support measures, even though the courts have ruled that most patients would accept or refuse medical therapy based on the ability of the therapy to support sentient life over mere biologic existence. The courts recognize that it is always better if the patient is able to participate directly in the informed decision making, but baring this the concept of ‘substituted judgment’ is employed where family or surrogate decision makers speak for the patient, based on their intimate knowledge of what the patient would have wanted.”3
How do patients who have implanted pacemakers and automatic defibrillators die? Katy Butler shows us that they can die slowly and badly. And she condemns the pacemaker industry for unethical practices. Interspersed with the pathos of her father’s story are many pages devoted to the history of the development of the medical technology industry and cardiac surgery advances. She investigates how bribes and kickbacks to physicians, cardiologists, and surgeons were given to reward them for using interventions even when the outcomes were futile, while the primary care physician who knew the patient the best was reimbursed minimally for the time he/she spent caring and counseling the patient and the family.
While her statistics and facts were true at the times they were presented, many of them are not true today and may give a wrong impression of the entire medical profession based on her 1-sided approach. My own father has had a pacemaker for 10 years and he is now 94 years old, still active as a docent in the Museum of Tolerance and the Holocaust Museum in Los Angeles. Medicare pays for most of his medical expenses (which are considerable) and the supplement which costs him $450/month pays for the rest. He is lucky that he can afford the supplement. Former Vice President Chaney is alive and functional because of his automatic defibrillator.
Kickbacks and incentives for prescribing or using expensive treatments or procedures are illegal today. Expensive trips to Hawaii funded by pharmaceutical or medical technology companies are illegal. It is not fair to assume that young physicians, who have sacrificed 11 to 15 years of post-high school life, and amassed debts as high as $500,000, will prescribe a medication for their patients or perform a surgical cardiac procedure because they were treated to a nice dinner or were given a pen and pencil set by a company representative.
Notwithstanding these diversions in the book, Katy Butler does give us a personal story of her father’s struggle to have a “good death,” and how even a “bad death” had some redeeming value for the remaining family. On page 86 she writes: “Patients weren’t always grateful. In a small rural hospital in Virginia in the mid-1970s, a nurse came proudly to the bed of an elderly woman whose life she’d saved by performing a cardiopulmonary resuscitation that had cracked two of the old woman’s ribs. ‘I will hate you till the day I die’, the old woman said. ‘You took away my chance to go to heaven, and on top of that you hurt me’.”
As a whole, I would recommend this book to all physicians because we all need to be more aware of what our patients really want as they are approaching the end of their lives. The story of Katy Butler’s father raises many issues; her father had a devastating stroke at the age of 79. He needed a pacemaker so he could have a safer surgery to correct his ventral hernias. But then, he had several additional smaller strokes leading to progressive dementia. He was dying slowly. All of us risk being involved in similar scenarios either as the victim or the caregiver. We saw all perspectives in this book.
1. Jennings B, Ryndes T, D’Onofrio C, Baily MA. Access to hospice care. Expanding boundaries, overcoming barriers. Hastings Cent Rep. 2003(Suppl):S3–7, S9–13, S15–21
2. Cowley LT, Young E, Raffin TA. Care of the dying: an ethical and historical perspective. Crit Care Med. 1992;20:1473–82
3. Berger JMVadivelu N, Kaye AD, Berger JM. Ethics in palliative and end-of-life care. Essentials of Palliative Care. 2013 New York, NY Springer:483–500