Published September 10, 2013.
Journalist Katy Butler supported her aging parents through two very different trajectories in their final years.She describes their final years in her 2013 book Knocking on Heaven's Door: The Path to a Better Way of Death.
Her father, Jeffrey, experienced a stroke and then a series of medical problems that deteriorated his quality of life. Most notably, he had cognitive problems due to vascular dementia.
However, the bulk of Butler's book addresses the decision to give her father a pacemaker so that he could withstand an operation to repair a hernia.
In the years that followed, Butler and her mother, Valerie, regretted that decision. When his memory failed, his personality changed, and his mobility faltered, they tried to have Jeffrey's pacemaker switched off. However, the ethics of that decision was questioned repeatedly.
After watching Jeffrey's life prolonged well past a quality of life acceptable to him and his loved ones, Valerie chose to reject medical interventions when she started experiencing serious heart problems just a couple of years after the death of her husband.
Instead, Valerie chose palliative care and died without having to spend her last months or years in and out of hospitals and under the care of family or paid caregivers.
Butler provides a lot of details about her parents' marriage and her father's care while sharing her thoughts about the "default setting" of the medial community to prolong life without taking into consideration the quality of the life that remains.
The book may offer insights about people living with any number of chronic or terminal diseases, but there is wealth of detail about the heart, heart surgeries, and pacemakers in particular. At times, the attention to pacemakers borders on an obsession.
Death and disease are difficult life challenges. In the wake of such troubles, it's natural to search for an easier path, a better outcome. But it's difficult to know if Jeffrey would have died "A Good Death" under a different set of circumstances.
Given her strivings against the realities of her father's health problems, I would be tempted to prescribe some readings in Buddhism to Butler. However, she is an ordained Buddhist nun. She includes several passages where she turns to Buddhism to address her dis-ease with her father's failing health.
Yes, Butler may have struggled to accept her father's decline, but the result of her obsession is a book rich with detail for the readers' consideration.
Related:
Books on the Dying Process