Katy Butler always assumed her aging parents would experience an active retirement before dying peacefully at home, as 75 percent of Americans wish to do, but only 25 percent actually do. However, though an athletically fit individual her father suffered a stroke at the age of 79 leaving all his faculties in severe decline.
In spite of his terrible condition, doctors insisted on implanting a pace maker to keep his weakened heart pumping while his quality of life declined to near zero. Her mother became a full time care giver for the next 6 years, and she her mothers helper for much of the time.
After her mothers peaceful passing, having refused draconian intervention, Katy, a trained journalist, set to writing this poignant biography of her families efforts to have her father’s pacemaker turned off, only to find that advanced medicine, in its single minded pursuit of maximum longevity, often creates more suffering than it prevents.
In researching her outstanding book — Knocking on Heaven’s Door: The Path to a Better Way of Death — Butler discovered and describes the perverse economic incentives within medicine, along with the ignorance, fear and hope within our families, that promote maximum treatment, leading to medical technologies successful war on natural death.
She tells us that a quarter of Medicare’s annual budget of $560 billion is spent on the last year of life, and that 20% of all deaths take place in intensive care units where 10 days of futile treatment cost $323,000.
While the author continually indicts the medical profession for pursuing goals that are eventually antithetical to the quality of life, she recognizes the imponderable dilemma families face in their struggle to keep their loved one alive, often at any cost. In discussing this book with doctors myself they will quickly describe real life examples when patients recovered a considerable quality of life when logic and training said all was lost.
Beginning with chapter 5 Butler charts the development of a long line of life saving technologies between 1952 and 1977 leading up to contributions by Dr. Diane Meier who was later to receive a MacArthur Award. She, after witnessing the resuscitation of an 89 year old man wrote “Almost without discussion, the primary moral principle underlying medical practice became the obligation to prolong life regardless of the toll in suffering, poor quality of life , or cost.”
It was through medical advances and Dr. Meier’s accurate description of medicine turned on its head that lead to the terrible ordeal for her parents keeping her father from a death he would have likely preferred had he been competent to understand it.
Butler did considerable research on the functioning of the brain and the detailed decline that comes normally with age and that which accompanies trauma. She describes her father’s condition and says “there came a time when the losses mounted beyond what a human being could bear to watch or to endure. Or should be forced to by an act of medicine”.
In this regard she has much criticism for the drugs and their costs to Medicare which supposedly are aimed at improving some one or other of the disabilities that accompany dementia which actually appears to not be fixable like a simple machine. She says, “Neurons die and don’t come back. Despite repeated hopeful scientific announcements of breakthrough drugs, new diagnostic tests, and genetic discoveries, there remains no pace-maker for the brain, no penicillin, no Botox.”
Much of the book, when not a wonderful autobiography, reads like investigative journalism of how technical medical devices were developed among cut-throat competition and how manufacturer’s powerful Washington lobbyists insured their being written into Medicare protocols.
Perhaps her most striking discovery is that wealth which once flowed from generation to generation now flows instead to assisted living chains, long term insurance providers, home care companies and nursing homes. A quarter of the elderly spend all of their savings including the value of their homes on caregiving and out of pocket medical expenses. She says “this represents a stunning evaporation of the capital transfers that traditionally helped families become upwardly mobile or maintain their shaky perches in a beleaguered middle class.”
In her final chapters Butler argues for public support to bring society back to a better way to die and offers an excellent road map toward success. This is an outstanding book for anyone who believes that death is inevitable.