Jonathan P. Baird

Sometimes the blurbs on the back of a book can grab you. Such was the case with Katy Butler’s new book “Knocking On Heaven’s Door”, subtitled “The Path To A Better Way of Death”. The blurbs included praise from Annie Lamott, Dr. Sherwin Nuland, Adam Hochschild, Alexandra Styron and others. It was enough to hook me.

I was curious what Butler had in mind for a better way of death. Really the topic is ignored and I guess no one wants to think much about death. Considering its omnipresence in all of our lives, the denial of death still remains surprising. It looms larger as you hit your early 60’s because whatever you think about it, it is around you more. That is generally not true in your 20’s or 30’s.

The heart of the book is Butler’s heartfelt, honest exploration of the death and dying experiences of her parents. She asks many good questions about our societal approach to the end of life.

Her argument really is about the good death. She argues that we have in the name of life preservation embraced the use of medical technology to keep people alive as long as possible. Instead of death with dignity, we treat death as the enemy and struggle to keep people alive regardless of circumstance. In the process we belittle quality of life. We keep people going who suffer from dementia; who are utterly enfeebled; and who are experiencing awful pain.

Butler captures the misery of people living on when their physical and psychological capacities have been greatly diminished. She is not arguing for euthanasia so much as she is raising questions about our life-at-all-costs approach. To quote Butler:

“Eyesight dims, joints stiffen, heart beats slow, veins clog, lungs and bowels give out, muscles wither, kidneys weaken, brains shrink. Half of Americans eighty-five or over need help with at least one practical, life-sustaining activity such as getting dressed or eating breakfast. Nearly a third have some form of dementia and more develop it with each year of added longevity.”

She shows the difficulty of questioning doctors about allegedly life sustaining treatment. Often, family caregivers must face the hard question of whether their beloved and frail elder should undergo some medical procedure to save and extend life. As Butler says, “When is it time to say “No” to a doctor? To say “Enough”. ”

Butler goes on to discuss both the economic and human costs of medical overtreatment. She points out that a quarter of Medicare’s $560 billion in annual outlays cover medical care in the last year of life. She questions the wisdom of many Medicare expenditures and whether they are primarily about profit – not patient well-being.

As for the dying experience itself, too often people are sheparded into alien hospitals where they are hooked up to a multitude of machines while an ever-changing cast of doctors make brief cameo appearances. The dying person is typically surrounded by strangers, albeit well-meaning strangers, who do not know the person they are tending. I would argue, along with Butler, that dying at home or in a comfortable environment surrounded by your family and friends is an infinitely better way to go than the hospital scenario.

Butler tells the personal stories of both her parents. They were a lively and healthy couple. They exercised daily, ate fish, vegetables and fruit. They had a good ‘young old age’. They did everything right as far as taking care of themselves. And then, in 2001, Butler’s father, Jeffrey, had a stroke. This was the beginning of his decline which went on for years. As she poetically described it, her family’s life which once looked like a jeweled snowflake became a dark flower.

Butler is a very empathetic and loving chronicler of her father’s last years. She belatedly questions the implantation of a pacemaker (a year after the stroke) which kept her father going a lot longer. Butler’s mother, Valerie, had to assist in all activities of daily living. Her father could not get out of bed, brush his teeth, get dressed or wipe his bottom. Butler doesn’t sugarcoat. She showed the stroke devastated two lives and transformed her mother into a 24/7 caretaker.

Butler’s mother, with whom she had a problematic relationship, had been a formidable, difficult mother. I liked how honest Butler was about her family and its complexities. Experiencing serious heart trouble at age 84, Valerie decided against major surgery. She did not want to risk being debilitated or being put into a nursing home. She rejected all heroic measures and fought the doctors who wanted to do procedures on her. Butler describes her mother’s death this way:

“She died of old age, sickness, and death. She died of a heart calcified and broken by six years of nonstop caregiving. She died of being eighty-four. She was continent and lucid to her end. She took back her body from her doctors. She died the death she chose, not the death they had in mind. She reclaimed her moral authority from the broken medical system that had held her husband hostage. She died like a warrior. Her dying was painful, messy and imperfect but that is the uncontrollable nature of dying. She faced it head-on.”

Reading about Butler’s experience with her parents made me reflect more on the deaths of my family members. My sister Lisa was the only one who escaped the hospital end of life scenario. Her death, as awful as it was, at least happened in the familiar setting of my parent’s apartment in Wynnewood Pa. Lisa had gotten help from hospice and she was surrounded by very loving friends and family. The fact that her diagnosis of breast cancer was known helped her plan.

I am not sure if both my parents had to die in a hospital. I think not in the case of my dad. He had been in failing health for reasons that were not entirely clear. He was 88. He had been diagnosed with a herniated disc. He had been presenting with back pain. We did not know the reason for his illness and death was really adenocarcinoma. We only found that out after he died. The cancer had been masked behind the back issues and I do not know why it was not diagnosed earlier. If we had known earlier that cancer was going on, he could have died at home. I was not impressed with the care he received at Lankenau Hospital in Philadelphia. There seemed to be no continuity of care.

As for my mom, her medical issues cascaded quickly. She died relatively suddenly within the course of a weekend. She had had a rough four month period where she had been to the hospital, assisted living, and back at home briefly. It seemed like she was getting stronger although she was 85. My mom had a heart attack. She had previously had a diagnosis of congestive heart failure. The doctors could not get her medications right, it seemed. As I have mentioned previously, I am not sure how much my mom wanted to live at that point. My only solace is that she went quickly.

My mom was not a fan of any nursing home. She saw nursing homes as scary places, in part, because she had seen the experience of her good friend, Jane Fried. Jane had been shelved away in a nursing home outside of Philadelphia far away from any family. Jane’s husband Bud had also originally been placed there too. He died under what seemed mysterious conditions when he supposedly choked on food. After Bud’s death, Jane remained there. My mom saw Jane become delusional after an extended stay (apparently not an unfamiliar outcome for many nursing home residents). My mom was horrified.

My mom and I used to discuss the creepiness and alienation so readily visible at the nursing home whenever we visited Jane. My mom, a loyal friend, went out there often. The gorked out people; residents sitting alone, isolated in wheelchairs in front of TVs that never went off; the end of life sadness and loneliness where visits from relatives were rare treats: all were part of that scene. Maybe if we were more accepting of death, we could figure out end of life settings that are communal and honoring rather than remote, out of sight and out of mind.

Butler touts a movement she calls Slow Medicine. She writes about taking back death from medicine in the same way the natural child birth movement recaptured birth in the 1970’s. Her antidote to medical overtreatment is not undertreatment. It is what she calls appropriate care. Butler has performed a wonderful service by initiating discussion around a whole range of issues related to dying. She suggests humane alternatives to how we typically as a society do dying. By presenting a true picture of her parents’ lives and suffering, she has honored them.