Is it possible to write honestly about death?
When Katy Butler, author of Knocking on Heaven’s Door: A Path to a Better Way of Death, read at Litquake Palo Alto this summer, the room was riveted. It was a panel titled “Memoirs: Women’s Passages,” and the audience was a whole lot of women. Like it or not, the fact is this is the gender most affected by end-of-life decisions, as women comprise the vast majority of caregivers. Birth and death, we joke in hospice palliative care circles, is the domain of women: the guys get everything in the middle, women get the goalposts of life.
Knocking on Heaven’s Door began its life as an essay in The New York Times, one that received a tremendous outpouring of response from medical practitioners, patients, families, and clergy. “What Broke My Father’s Heart” is the story of eighty-five-year-old Jeffrey, a retired professor. A stroke at age seventy-nine left him incapable of looking after his own basic needs, forcing his elderly wife to become his constant caregiver. He developed a painful hernia and was referred to surgery. The cardiologist refused to perform surgery unless Jeffrey had a pacemaker installed. Stroke symptoms impaired Jeffrey so severely, the decision was left to his wife, who anxiously agreed to have it installed. The hernia was fixed. The pacemaker continued ticking over the next eight years as Jeffrey was diagnosed with severe dementia, developed macular degeneration and incontinence, and steadily, painfully declined. The pacemaker ensured he could not die.
Katy describes her book as a braid. It is part-memoir, part-medical history, and part-investigative journalism. She is quick to correct me when I say she is a seasoned writer with credits in The New Yorker, The New York Times, Washington Post, LA Times, Mother Jones, among other publications. “Yes, for thirty years I have been a journalist, but writing a book is very different,” she says. “I have not done anything like this before. And the subject is so very personal.”
The Rumpus: I was on my way to Toronto when you agreed to this interview. I was in the San Francisco airport reading your book at a café counter, highlighting parts and making margin notes, when the server asked me about the title. Before I knew it, she was talking about her father dying of cancer, how “he felt bad that her mother was so worn out looking after him.” With tears in her eyes, she poured me coffee and said, “Dad said to me, ‘That’s why I married your mother: because I knew no woman could love me the way she did.’” This prompted other people at the counter to talk about their aging parents and how they want to handle end-of-life care. What discourse do you want to generate with your book?
Katy Butler: Exactly conversations like that! Exactly. It is amazing for me to hear that a bunch of people would start talking like that. I mean, about something so loving and so deep and also, in some sense, so taboo—and just by you holding my book in your hand.
Because I do worry that—oh no, it’s a book about death—nobody is going to pick it up. So to hear that there is also the absolute flip side of the coin, which is that we are also really eager to talk about death and to talk about these things that have so often been shoved into a corner.
What I really hope is the book stimulates and catalyzes conversations about how we die that are deep. Conversations about how we love people wisely, both for ourselves and for them. I also hope it opens up a public conversation on this taboo subject—which is, are we essentially forcing people to live too long because we have medical technologies we don’t know when to stop using. I think people need to develop more of a shared language to talk about these issues, because right now it feels like we have an impoverished language in which to discuss them.
Rumpus: I think in America it will be a struggle with balance: how to balance an independent history and spirit of bold individualism with the reality, at end-of-life, of a village.
Butler: There are a couple of things that are peculiar to America that really feed in here. One is the romance with technology and a hope among many people that technology can solve any social, spiritual, practical problem. This plays out in our amazing medical system, where we have gotten very successful at banishing sudden death or random death throughout the lifespan. Unfortunately technology cannot solve the ultimate problems of end-of-life, which is, we will all die, technology or no technology. And if we are too in love with the technology and think it can do everything, we don’t fall back on our own spirits and our cultural traditions to prepare for the end of our lives.
Rumpus: Do you think technology puts up barriers?
Butler: Yes! And then in America, there is this added idea of untrammeled freedom—freedom of expression, freedom of movement, the glorification of the individual—that also plays itself out here. We want freedom of choice, but we don’t understand how our choices have already been shaped by a medical system we really don’t understand. An example with my father was our American Medicare system would, without a blink, pay for a pacemaker that cost $12,500, but the very same system would not pay a doctor $200 to have a serious discussion as to whether this pacemaker was appropriate for this stage of my father’s life. Which, frankly, it was not. So people don’t understand how their choices are already constrained by this sort of shadow puppetry. Can I say that? I think I can say this here because Rumpus readers are somewhat erudite and they think, and understand, outside the normal lines.
I am a Buddhist, and my teacher is Thich Nhat Hanh, and he used to say, “Happiness is not an individual matter.” It is not strictly a matter of sitting down in a room all alone and writing an advance directive that says I don’t want to be put on machines. The nature of how we die affects not only us, but also the people that we love and leave behind—a prolonged intensive care unit death is very likely to leave survivors anxious or depressed or suffering from post-traumatic stress, and so when you sit down in that little room, you think you are doing something for yourself, but actually you are doing something for the people you love.
What I say in my book is that a sense of urgency is one of the major factors, I believe, in creating bad medical decisions toward the end of life. It is very rare that a pacemaker has to be put in tomorrow, or that someone has to be whisked in to valve replacement surgery later today. Fifteen minutes to make a decision is fine if you are choosing a digital camera. But you’re talking about a miniature life support device inserted into someone’s body that might be very appropriate on the day it is inserted and totally inappropriate five years later. And we didn’t even know that it had a ten-year battery; even our internist thought it was between three to five years at the max.
Sadly, older people and their families are often rushed into these decisions by a false sense of urgency, when one of the wisest things to do would be to say, “Let’s slow down this decision. Let’s take the weekend to think about it. Let’s do some of our own research or maybe hire a consulting doctor. This isn’t something that has to be done today.”
Rumpus: What about asking the question “how will this affect they way I die?” That requires we have a larger understanding of “how do we want to die?”
Butler: Yes and the older you get the more the equation shifts. I mean, for someone my age—I’m sixty-four—“how do you want to die” is a pretty abstract question, but when you are seventy or eighty, and your body is fragile and you don’t bounce back from surgeries as well, it becomes more and more likely that certain medical interventions will put you on the pathway to the kind of death that you really don’t want. So if you ask them, “How do you want to die,” they will say, “Wait a minute. I’m nowhere near death. I’m still healthy.”
In fact, I think older people are something like Humpty Dumpty: they are sitting on a wall and they are fragile and you just don’t know what is going to turn out to be the bad fall that makes it impossible to put them back together again.
For example, in my father’s case, late in his life, well into this pacemaker incident, he fell in the driveway and had a brain hemorrhage. They kept him in the hospital for six days and thankfully, they decided not to do any surgery. He was very fragile at this point and had severe dementia. After he came home he was having hallucinations, which he never had before. Simply being in the hospital sent him into a downward spiral, which is quite common. It’s called hospital delirium.
Rumpus: Yes, they wake you up to give you medicine to sleep. Let’s talk about the personal in your memoir, and your writing process.
Butler: I just think of one thing—many drafts! I said at Litquake, about reading as a writer, that you read first just for joy, and then, if you want to learn from it, to read it and take it apart to figure out how the author did it. This is also true for writing. I write journal entries, and I am aware that the story for me and the story for the reader are not necessarily the same story. I mean, I am a character in my book, and so are my parents. There are lots of lovely things I would like to tell you about me and my parents that are not in the book because they don’t really serve the narrative.
Rumpus: Much of Knocking on Heaven’s Door is written while you, yourself, are grieving. How did you do that?
Butler: I think partly because I have been a journalist all my adult life, I love critical thinking, I have always questioned authority—I am a baby boomer and I think we have done so all through the lifespan, and did so quite intensely around the question of how we give birth, so it doesn’t surprise me that as a baby boomer writer, we are also wanting to transform the experience of death.
That said, I did find it difficult when I was writing. It was like two sides of my heart and two sides of my brain, one day I would be researching cardiology treatment guidelines and reading about when you should and when you should not put in a pacemaker, and another time I might be writing and crying about my mother’s death, partly because I felt, in retrospect, that I missed warnings signs and I wasn’t there for her. It clouded my brain, and it was hard to shift between these two modes: the mode of a loving daughter describing her parents dying, and the mode of a critical thinker looking at the whole system and saying, what happened here? Why did this happen to our family? What does this say about the system?
It was difficult. And yet also, I would say that the process of writing the book was very healing because I saw many more positive strains in the narrative than I did when living it.
Rumpus: The last chapter, “Notes for a New Art of Dying,” outlines step-by-step what we can expect in the process of dying, and offers assistance for family and caregivers at critical decision points. I’m wondering, many of these steps you learned, as we say, the hard way. Can you pinpoint the mistakes your family made?
Butler: The mistake in my entire family was loving a great deal but not being openly expressive of that love, being very English and subtle and maybe sideways about how we showed love. What I learned through the process was how important it is to be open with people, to be gushy and, well, not to be so English!
That’s one part. Another part is I was frightened of my mother and I didn’t fully understand how frightened I was until after she died. I was impressed with her, I admired her, I loved her, and I was intimidated by her. She and I had an absolutely terrible fight about halfway into this horrible process, where she attacked me and told me that I was excessive and ridiculous and all I thought about was me, me, me. I was deeply, deeply hurt and angry, so I wrote her a letter about it, reproaching her for everything she had done. But I was still afraid of her, so the result was, I pulled away and didn’t visit as much as I now wish I did. I wanted her to apologize; she didn’t. You know: it was a mess. In retrospect, I wish I had the gumption to be tougher with her and to have actually confronted her face-to-face about it and said, “You’ve got to stop doing this, and I need assurance that you are not going to do this again, and if necessary, we need to go to a social worker and figure out some ground rules, because you are hurting me so much that I want to pull away and not help you.”
Rumpus: That is excellent advice for a number of mothers and daughters out there. I say that as I am right now visiting my twenty-eight-year-old daughter, who has been listening to me talking to you about parents dying and children putting their lives on hold to care for them. I notice she is making sure I have eaten and moving articles in the hallway so I don’t trip.
Butler: Ha! That’s funny.
Rumpus: Any regrets?
Butler: I deeply regret that I didn’t fly back when the pacemaker was first suggested. It is only in retrospect, now that I am older and I have done enough research to realize that any kind of medical intervention with people who are approaching their eighties is a big deal, needs serious discussion, and most importantly, time, time, time, before it is made. So I think at least a couple of years of my father’s suffering could have been averted if my mother and I had slowed down the decision-making process when the doctors first said that he had to get a pacemaker. We could have avoided installing a pacemaker, he would have died a natural death a year or two sooner, and it would have been a blessing for everyone. And what did I learn from that mistake? Don’t turn over your power. Trust your gut reactions and your gut uneasiness and pursue it and give a face to those promptings inside yourself.
Rumpus: Yes, and I guess there’s also this question: did you learn anything for when the time comes to make these decisions for your own end of life?
Butler: I am very clear now, which I wasn’t when the book started, that it is inappropriate to defer trust to the medical system to help you when it is close to the end of life, because it is just not equipped to deal with these situations responsibly. It’s a terrible thing to say, but there is nobody here but us chickens and we are on our own. And if you are passive and trusting in the face of the current medical system, and if you don’t do your own independent research or thinking, you run a very high risk of having the kind of dying that is not the kind of dying that you think you are choosing.
Rumpus: This morning I got into a heated argument with an old friend. He just celebrated his seventieth birthday and after being a widower for over a decade, is engaged to be married a second time. He confidently informed me that the actuarial tables indicate that he will live to a healthy eighty-nine. I told him about the troubles I saw with how we North Americans are dealing—or not dealing—with death. He claimed there is nothing new under the sun, that technology is not the problem at all, that technology might change or do new things but people do not essentially change. Pain is pain, difficult decisions are difficult decisions—we just have to suck it up and make them. Begrudgingly, do you think he might be a little bit right?
Butler: Well, I think that technology doesn’t create these problems; it facilitates bad decision-making at the end of life. I don’t think people have ever really wanted to die, but never before in history have we been in the position where we have to affirmatively say “take that cup from my lips,” or “I do not want that pacemaker,” or “I do not want that extra day, or decade,” or “I do not want that extra line of chemo.” I mean, this is a new human dilemma. When Childe Roland was dying on the battlefield in Roncesvalles, he said, “I know my time is near,” and according to the legend, he lay down, eyes toward heaven. He went through the events of his life, and he knew he was giving up the ghost. Now, if he were in an intensive care unit today, everything would be done to get him through this current wounding, and it might or might not work, so he would not have the opportunity to prepare for this death the way he got to prepare for his death in the Middle Ages.
The other thing is, cultural context changes the way we make decisions. The kinds of cultural conversations that hopefully Knocking on Heaven’s Door will provoke. There is a book the Quakers studied called Piety Promoted, about the deathbed expressions of pious Quakers. People read these books like bestsellers and updated them through generations—accounts of how to die, literally. These books gave people an imaginative scenario for what the deathbed was like, that most Americans certainly don’t have anymore because we don’t write books like that, we don’t read books like that and a lot of us are adrift from religious traditions that help us prepare for a good death.
Your friend’s point of view expresses that individualism, but you know, we’re not isolated atoms. The way we think and act is very colored by the water that we swim in. So yes, you can suck it up and make a decision, but if you don’t even know the context and you only see a bleak future ahead of you any kind of scenario for what a good or bad death would look like, you are disempowered. Which is interesting because it is just the opposite of what he thinks he is.
Rumpus: How important is religion and spirituality in all of this?
Butler: Here my mother and I were Buddhists, and had been so for thirty years. We were both in some ways loners, and at the time of my father’s death, neither one of us were part of a living, breathing Buddhist community. And we found ourselves kind of bereft when my father was in a hospice unit for the last five days of his life, suffering from pneumonia, and we were not giving him any artificial food or water. It was a very hard process to witness.
Rumpus: Yes, I understand. I did this with my own mother.
Butler: I actually asked for a Buddhist Chaplain, but this was Middletown, Connecticut and they gave me a blank look. In the end, I took comfort from the Episcopal Hospice chaplain. My father was probably Christened as an Episcopalian when he was born in South Africa. [The chaplain] gave him the classic Anglican last rites. I did it behind my mother’s back; I was a little afraid she was going to walk into the room, and she was a fiercer agnostic or atheist than my father. And I felt tremendously comforted by these words, which are part of the Book of Common Prayer. Even though I didn’t believe he was going into the company of the Saints, and I don’t believe in Jesus as a living, divine presence, I was immensely comforted, by saying those words, that I was turning him over to these unknown and benign forces in the universe.
Rites of passage are about changes in identity and changes in social meaning, the shift from being a living being into someone who is very soon going to be dead. For the family members it is also a transformation in identity. You are becoming a widow, widower, saying goodbye. I hate the term “orphan”—at sixty-four, it just seems ridiculous to call yourself an orphan. I mean, this is not Dickens!
Rumpus: But you are an adult. I think when a parent dies, no matter what age you are, you are now fully an adult for you no longer have a place in the world where you are a child.
Butler: Yes. Exactly.
Rumpus: Knocking on Heaven’s Door made me think of my death, how I want to die, what I need to make clear now, to those who will be affected directly by my dying, my actual dying. Where to start?
Butler: I’m a big fan of going into the shallow end of the pool. So many people don’t fill out these advance directives for so many reasons. You know we might get a lot further if we had these conversations about how would you like the room to be when you are dying, do you want flowers there, is there any particular poetry you would like to be read to you—those kinds of things. It might be a much more friendly, more aesthetic way to start approaching contemplating the end of our lives.
Featured image of Katy Butler © by Cristina Taccone.
Other images featured in Knocking on Heaven’s Door and courtesy of Katy Butler.