Deeper conversations about dying are underway for Karen and me since we read Knocking on Heaven’s door: The Path to a Better Way of Death by Katy Butler. It’s the story of a prize winning journalist caring for her parents as they fought to die according to their wishes. The searing experience convinced Butler loved ones need early conversations about their final wishes to reverse the perverse deaths people frequently experience.
For years as the health of her father, Jeff, failed, the health of her care-giving mother, Val, also failed. To relieve their suffering. Butler plunged into researching why disincentives in medical care cause most people to die in hospitals although they want to die at home. Her book is a powerful memoir, a spiritual journey and a practical guide.
The good news is Butler believes patients are increasingly empowered by palliative care, the program defined as counseling and education for staff and patients aimed at the psychological, social and emotional well-being of patients in combination with aggressive medical care.
Jeff suffered a crippling stroke at the age of 79. Later, doctors recommended a pacemaker as a safety precaution during a minor surgery. The cardiologist didn’t understand the wreckage in the quality of Jeff’s and Val’s lives wrought by Jeff’s deteriorating heart. Butler describes the disincentives for lengthy counseling with the possible consequences of the pacemaker and aggressive best care.
Jeff lived long past the time he wished to live because his pacemaker kept working. Out of exhaustion Val finally asked Butler, “Please help me turn it off. It’s killing me.” Butler said, “I wanted to turn it off because I loved him.”
I have a pacemaker and the image of me mindlessly waiting while it ticks through its ten-year battery life frightens Karen and me. I received it two years ago after a cardiac specialist treating me for heart failure and atrial-fibrillation recommended it. Despite medications I had blacked out the month before and now had dangerously high heartbeats. After a 15-minute conversation about the advantages, a pacemaker sounded good to me. That night I told Karen about my decision.
It’s been good for me as my heart has improved. The recent pacemaker readings show my heart is performing so well the specialist gave it an A+.
But it won’t always go well. The battery will need replacement in ten years when I’ll be 83. At that age forty percent of people have dementia. I’m constantly at risk of a serious stroke, like Jeff had. Butler said patients with serious strokes usually have slight improvements for a year and then a steady decline. If I have a stroke, do we want the authority to turn off my pacemaker or replace the battery?
Butler says, “You have a constitutional right to refuse medical treatment or ask for the withdrawal on your own behalf or on behalf of someone who has legally entrusted you with that role.”
Now is the time to talk, because we’re not as prepared for a crisis as we thought even with living wills. Under what conditions? How do we establish written authority in my records for someone to make that decision? Who will be willing? How do we even start that conversation?
Butler recommends starting that conversation through the Conversation Project (theconversationproject.org) initiated by Pulitzer-prize winning writer Ellen Goodman. After her mom died, Goodman told colleagues in media, faith and medical professions she had talked with her mother about everything except how she wanted to spend her last days. The website says eight out of ten people want to have those conditions in writing, but barely two in ten have written it down.
The website prepares each person to start the conversation by asking themselves, ‘What matters to me? ‘How involved do I want to be?’ ‘What should they do to fulfill my wishes?’
Other sources exist. At our local Confluence Medical Center, Ginny Heinitz is the nurse in charge of providing palliative care (see the article by Jim Russell on the Specialist for Psychological, Social and Emotional Healthcare in this issue of the Empire Press). She believes the need is overwhelming. “We’ve heading for a crisis if it hasn’t already occurred.”
Read the book and start your conversation. It’s liberating and loving.