In 2001, author Katy Butler’s father suffered a stroke. Thus began her and her family’s long journey through our health care system detailed in Knocking on Heaven’s Door: The Path to a Better Way of Death.
After his death, I would not rest until I understood better why the most advanced medical care on earth, which saved my father’s life at least once when he was a young man, succeeded at the end mainly in prolonging his suffering.
During vigorous rehabilitation to regain strength following the stroke, Ms. Butler’s father developed a hernia—a painful tear in his abdominal muscle wall.
A surgeon was consulted, but would only perform the relatively minor surgery if Mr. Butler, who had a slower than average heart beat, had a pacemaker put in first.
The five years following the pacemaker saw her father slide downhill into dementia, frailty, incontinence and dependence—although his gadget-driven heart ticked along as designed—taking a serious emotional toll on the family.
Why had his doctors not let nature take its course? If the pacemaker had never been implanted, I thought, my father might well have been out of his misery, and so would my mother and I.
The emotional and financial burden
The author and her brothers all lived in different states than their parents. The burden of caregiving, as it most often does, fell to the spouse.
Even though a capable woman was hired to give my dad showers, my 77-year-old mother found herself on duty more than 80 hours a week. Her blood pressure rose and her weight fell. On a routine visit to [her internist], she burst into tears. She was put on sleeping pills and antidepressants.
The author also details the financial cost of her father’s prolonged dying. Soon after the stroke, both parents saw a financial planner who warned of “spousal impoverishment” and spoke of “transferring assets” to protect themselves from catastrophic long-term care costs.
Each medical advance that fixes the body without helping the mind increases widespread survival into extreme old age and fuels the dementia epidemic.
Wealth, traditionally transferred from one generation to the next, now flows instead into the treasuries of assisted-living chains, long-term insurance providers, home care companies, and nursing homes.
End of life planning
What struck me about Ms. Butler’s story is its ordinariness.
Her family is like millions of others in this country: Educated, financially stable, relatively healthy although aging parents with adult children who live more than 100 miles distant.
Then one parent gets sick—heart attack, stroke, dementia—and the family is in crisis mode.
Ms. Butler’s parents had talked about end-of-life issues. They had living wills and durable powers of attorneys. They did everything right. But when faced with the reality of having to make complex decisions within our complex health care system, they lacked the necessary information and guidance.
Less than a year after her husband’s death, the author’s mother suffered a heart attack. With hard lessons learned from the years caring for her husband, Mrs. Butler was determined to avoid a prolonged death. She refused heart surgery and accepted hospice care instead.
She slept in her own bed until the night before she died. She was lucid and conscious to the end. She avoided what most fear and many ultimately suffer: dying mute, unconscious and “plugged into machines” in intensive care; or feeling the electric jolt of a cardiac defibrillator during a futile cardiopulmonary resuscitation; or dying demented in a nursing home. She died well because she was willing to die too soon rather than too late.
Katy Butler’s book provides a much-needed examination of a “typical” death in America and its devastating consequences.
She generously shares her story, what she learned, and what could have been done differently.
I learned that in an ideal world, doctors told their patients about the pros, cons, and alternatives to any proposed medical treatment. I learned that the pacemaker could have been avoided altogether if the hernia surgery had been performed another way, using a local anesthetic less risky to the heart. I learned that the surgeon could have hooked my father’s heart up to a temporary external pacemaker—a procedure that a leading cardiac surgeon told me was perfectly safe—and removed it after the hernias were sewn up and my father safely out of the recovery room.
And the book’s final chapter, Notes for a New Art of Dying, helpfully provides a long list of resources for caregiving, legal assistance and advocacy organizations that will help us find the path to a better way of death.