Book review of Katy Butler’s Knocking on Heaven’s Door: The Path to a Better Way of Death.
Katy Butler is a daughter, a writer, a life partner, a Buddhist. Mostly, Katy Butler is a daughter of whom more was asked by the medical system than should have been and more was expected of than could have been imagined by anyone as her father journeyed into his death.
This is the story of a family caught in the velocity of a medical momentum which erupts when someone enters the chaotic zone between a good life and good death. It is a heart-wrenching telling of what happens when we unwittingly place our trust in systems rather than people, in hope rather than clarity of thought. It is also a revealing, investigative and hard-nosed exposé of the death-preventing devices we hope would be life-sustaining. Butler invites us to journey with her to the realization that “(t)he honest, natural death is no longer the default pathway.” She begins by bringing us into her parents’ kitchen, sharing a cup of tea with her mother. This is a scene that can evoke memories of sweet poignancy of beginnings or endings; but here, here, there is a different evocation, a different prayer for an ending.
In my role as a therapist, I have had the privilege to sit with spouses and adult children who were in the center of the turmoil of a loved one’s passing. The primary referral for “treatment” was triggered, they tell me, when they blurted out to their physician a wish that their loved one would die rather than continue to suffer. Typically, the physician panics and sees this as a pathological response to caregiving; some may even report this fearing the distraught spouse or child may act on those wishes. Butler explores with tremendous sensitivity this unspeakable longing for suffering to end without ever dropping into unnecessary angst or drama. But that is just the first three pages. The entire journey she takes with her mother and siblings is a wisdom trail from unknowing to being with not knowing, from waiting to bearing witness, from reacting to systemic demands to compassionate action.
The event line of the book is typical: her father has a stroke. In the usual process of rehabilitation treatment, decisions are made. It is not the decisions themselves but the revelation, through Butler’s skillful foreshadowing, that there are always unforeseeable consequences. And for many of those consequences, the mission of the medical industry often runs orthogonal to the values of the family and ethics of a supported death. The medical history of life-sustaining devices and interventions (surgeries, medication) is brilliantly interwoven into the narrative. Without taking us away from the unfolding tension, it makes us want to shout into the book “Oh, don’t do it! Don’t do it!”
But this is more than a story of one family’s tumultuous love for each other and their battle with the medical system. It is a cautionary tale for each of us, even if we think death is occupied with our future and not our present. It revealed for me that it is not about finding that right person to “pull the plug.” In fact, by the time it gets to that significant point, too many decisions have been made without full awareness and “pulling the plug” plays the smallest role in ending suffering. Butler writes tenderly, “Dying is hard on the dying. Death is hard on the living.”
Dying is not an acceptable topic of conversation. Still. Yet. Even. But converse on it we must because by looking away we only create a larger cauldron of suffering for those to whom we have entrusted our final moment – so wrongly believing it will only be that moment in which they will be called to act. Butler’s story carries this urgent message. We can honour the concept of dying as sacred but it can become a tragic process if we do not consider that getting to death itself can be a tainted and misguided journey.
It is worth mentioning that this book stands as an act of profound courage. It is brutally honest about the nature of relationships, searingly insightful in the potential of healing, and shines an intense light on our ignorance of what naively assume is a good death. For that alone, it is an important one to read.
If you are interested in learning more about how to prepare and be with that honest death, here are some resources:
The Metta Institute offers training and workshops on end-of-life care as well as resources for practice.
Being With Dying Training at Upaya Institute is a rich program ranging in its training by Frank Ostaseki (Metta Institute), Laurie Leitch & Loree Sutton (Social Resilience Model), and Susan Bauer-Wu (Living with chronic illness).
The Canadian Palliative Hospice Care Association lists resources and programs for several professional groups (interestingly no psychologists), family caregivers, and volunteers.
The Quality End of Life Care Coalition of Canada document is a “Blueprint for Action – 2010-2020″ to improve end-of-life care and ensure training and funding for Canadians.