In collaboration with the Chicago End-of-Life Care Coalition, Life Matters Media will host award-winning journalist and author Katy Butler at Loyola University in Chicago on June 19. Butler will offer reflections on her best-selling memoir Knocking On Heaven’s Door, a personal examination of how medical technology is often used in ways that cause unnecessary suffering at the end of life for millions of Americans.
Butler spoke with LMM about her inspirations and experiences behind the book’s creation.
Are you surprised by the book’s success?
What most surprised me is the positive response from within American medicine, because the book really is a sharp critique of where we have drifted to with end of life practices in our medical system.
I didn’t expect to be invited to give grand rounds, and it has been a really amazing experience. I have also noticed a growing counter-culture in medicine– particularly from the palliative care doctors, hospice providers and primary care physicians– people who really want to see a change.
People know that something is wrong and see the suffering, or they have a family member that goes through this experience and realize that even though they are doctors and nurses, they still can’t navigate the system.
Do you ever receive letters from readers?
Sometimes two or three letters a day. I feel validated, and it makes it clear to me that what I am saying is becoming kind-of mainstream. Many, many letters from people facing an ill-advised late-life operation.
I have also noticed more stories of “blue skying” in letters. That’s when doctors tell you about a treatment’s advantages, and how it could work out really well- but they never talk about risks.
What does “good” end of life care look like to you?
To me, I think the ideal for most people is still the ideal of the Victorian age: you die at home, surrounded by friends and family, with pain controlled and with meaningful interactions with loved ones to help leave them better off.
That is not what we see in the U.S. Instead, one-fifth die in intensive care, and 30 percent cycle though intensive care in the last month of life. That leaves families traumatized.
What I have come to realize since I finished the book is that I do not think of good end of life care as being separate from good medical care for the aging. Instead, good end of life care should be a continuum- a shift from thinking of medicine’s most important role as maximizing longevity or curing people.
What would you say to a doctor who maintains that he or she has the responsibility to prolong life at all costs?
If you only believe in making your patient survive as long as possible, there will be a time when you feel like a failure. Every patient will die. But you can widen the lens and realize that you can always do something to relieve suffering and support the patient’s family.
Are you excited to present in Chicago?
This will be the first time I will be presenting to an end of life coalition, people who are really up on these issues- more so than other medical professionals. I want to devote some time to language. The end of life improvement movement needs a lot of help with language, because a lot of the language of medicine is still full of euphemism.
For example, “goals of care” is a term within medicine to describe the shift from all-out “let’s save their lives” to “let’s minimize suffering.” But to a lay person, what the hell does “goals of care” even mean? The word “care” is completely overused.
Register for the event here