?The line between 'extraordinary measures' and 'palliative care'?: An ...

Laurie Foos is the author of the novels In Utero, Portrait of the Walrus by a Young Artist, Twinship, Bingo Under the Crucifix, and Before Elvis There Was Nothing. She currently teaches at Lesley University and lives on Long Island. Foos? essay, ?On Bearing Witness,? recounts helping her father through his long illness and death. Interview conducted by Jasmine Turner.

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How would you describe your family?s experiences with end-of-life care???????????? ??????????? ???????????

What has remained difficult for me?even now, nearly four years after my father?s death?has been separating the actual last days of his life from the length of the disease?s toll on him and his long suffering. He suffered for such a long time, much longer than any of us who loved him could have ever foreseen. My father experienced additional complications, some of which were related?and some not?to the cancer, and so it became impossible for him to take morphine.? He lived for the better part of the 15 months that the cancer was terminal having to take Percocet, which took the edge off the pain, I think, but did not help him in the way palliative measures are meant to help. He also had a tremendous tolerance for pain and an enormously strong core, all of which conspired both to keep him with us longer and to prolong his suffering. His strength and will, through the course of his illness, worked both for and against him.

In his last days, my mother took care of him, and even though hospice care was in place, as anyone who has been through it knows, the nurses and aides do not come to the home very often. That part of things surprised me, as I?d expected more visits, more checking in, just, well ? more. The nurse who oversaw his care was lovely and straightforward, and I think back often to the conversation I had the night before he died and how I missed the fact that she was trying to tell me, really, how close he was to the end. I?ve since spoken with a good friend whose father died in a hospice facility, and in her experience, the nurses there walked her through exactly what to expect. My mother didn?t want?or need?anyone else there, and so I think the families of those patients who die at home feel more isolated, perhaps. Impending death is an isolating?and insulating?experience, anyway, so the question of how often strangers should participate is one that is multi-layered. The more people there are around, the more the dying person holds on. I see that now. My mother took amazing care of my father?better than any health care worker could have, I?m sure. I don?t think he was in any pain at the very end, but I still cannot say, even after all this time, that his death was peaceful. It?s hard to watch that much and that level of suffering and then call the end ?peaceful.? I hope it was. I wasn?t there at the actual moment; only my brother was present.

You write that your father died ?in increments,? little by little. Do you think that was a direct consequence of the care he received?

I think many things worked against him for the suffering to last for so long. He was strong, really physically strong?he?d lifted weights, had been an athlete?and when the body is strong at its core, it is less able to be overtaken. Add that to the fact that my father had this overpowering will to live. He did not want to go, not even at the end in those last weeks in the hospital. It is human to want to point a finger at someone or something when someone you love is suffering. There is a need to name the thing that is causing it because naming it might help, you imagine, to understand why things so horrible are happening. He lasted so long partly because of his strength, partly because of sheer will, and partly because the cancer did not move the way colon cancer usually does, from colon to liver. Instead, it metastasized to a place on his ureter tube and pelvic bone and lay there in wait for months and months.

Part of palliative measures, in my father?s case, was the surgical fitting of a colostomy bag. Having the colostomy devastated him. He never recovered from having to live that way. It changed him utterly. Without the surgery, though, as I detail in the essay, he would have died then, and died a violent death. My father protested, but he gave in?later, he said, because he could not bear to have us remember his death in that way. However, the fact is that doctors and hospitals are designed to keep people living, not to kill them or to allow them to die. I?m sure the hospital would have stepped in somehow if he?d refused, or he would have lost consciousness and the ability to refuse. I?m not entirely sure that some measures are a kindness, to be frank. I?m not sure the colostomy was a kindness, or where the line between ?extraordinary measures? and ?palliative care? ought to be drawn. There are no easy answers. In the last three weeks of his life, my father went into kidney failure, which resulted in bouts of agonizing dialysis. Because he was in a hospital, they had to keep him alive, you see. Even if he was terminal, as they well knew, they simply could not allow his body to fail. My father signed his own DNR while in the hospital that last time, though he told none of us. We found out only when they suspended the DNR to insert a nephrostomy tube so that he could be sent home to die. So, you see, it?s a very complicated issue. I was very angry with the doctors and the hospital for the stopping and starting of that procedure several times before they successfully inserted the tube, and there have been times when I?ve wished much of what happened to him in the last few months of his?life could be erased, that he would have been allowed to go without intervention. The memories of that time linger in me. I try not to dwell on them, but they come sometimes unbidden, and sometimes, yes, I do feel there is some blame attached not even specifically to the care he was given but to the system. Of course it is imperfect. Doctors are human beings, too, and many of them liked my father very much and tried their best to help him. Atul Gawande wrote a brilliant essay in the New Yorker about this very issue, and the ways in which physicians become influenced by their patients? will to live. That essay was a great gift; it helped me to make sense of things that I?d not been able to make sense of before.

You?ve written several novels and pieces of short fiction. Was this?essay a big departure for you, in terms of style?

I?ve never written anything so naked, so utterly close to the bone. It terrified me, and yet writing about my father was something I knew I needed to do. I still feel that need. My fiction tends to run toward the surreal or magical realist or absurdist?whichever terms you prefer?and so while this piece had elements of the strangeness of life, I could not hide in this essay at all. Stylistically I had to figure out my own voice in nonfiction; I?m still working on that. But I believe, as a writer, that we should write the things that scare us most, and I am so grateful to have done it and to have worked with [CNF's associate editor] Stephen Knezovich so closely in revision. He showed me when I needed to bring in the fictive techniques; I learned a great deal in writing this piece.

What sort of difficulties did you face writing about such personal events?

There was a call for pieces for the anthology in The Writer?s Chronicle, and that ad was the impetus I?d been waiting for. I?d been thinking of writing about my father since his death, and really, even before then, while he was ill and dying. I?d lie in bed at night and have lines running through my head?whole scenes, even. This still happens, and I?m wrestling with a memoir about him.

One of the major difficulties for me?aside from being much less comfortable writing nonfiction?is the question of what my father would or would not want others to know. There is no sidestepping the ugliness of disease, especially when that disease directly involves the very private bodily functions of elimination. I worried?and worry still?how he might feel about my relating some of those events. I tried to tread lightly while remaining unflinching, as he had been.? There were many things I did not tell because I thought they belonged to him and should remain so. Ultimately, I relied on my father?s unabashed and sometimes embarrassing pride in me and in everything I did?which, of course, is one of the things that I miss about him most deeply. My father thought everything I did was brilliant, and some part of me felt that he would have encouraged me to speak his truth. What kept me going with the essay and now, in this memoir endeavor which I go back and forth on, is my belief that suffering of that depth should not go unrecorded. I remember thinking at the graveside, actually, that he had gone through so much, and that we were leaving him there with all of it, burying all of it with him. It was our job?or at least mine?not to forget. Once my brothers and my mother and I are gone, there will be no one to remember all he endured. It?s not that I wish to dwell on such dark matters, but that I cannot bear the idea that his suffering should be rendered meaningless. I do not ascribe to the notion that suffering is somehow redemptive, and I think often of our human desire to assign meaning to horrific things that happen, whether in vast numbers or in close contact with a loved one.

?While writing about your family, were you worried about what they might think about the way you describe them, or the events you recount?

As a writer I believe what I tell my students, which is that if we start putting constraints on what we can or cannot write about or worry about hurting people?s feelings, none of us would write anything. But I don?t always live by that credo, much as I try, so yes, I did worry about their reactions. I worried that my mother wouldn?t feel present enough in the essay, as she did so much of the caretaking, painstakingly so and without complaint, and much of it was unpleasant. I worried whether I remembered events the way they did, whether I got them right, and whether they would feel slighted or misrepresented if my memories didn?t match theirs. Also, as I said above, I worried about the issue of privacy and the question of whether they would feel I should not mention some of the unpleasant particulars. I also worried that having them read the piece would bring up some of the memories that perhaps they have been trying to leave behind them; saddening them further was the last thing I wanted. But they have been very supportive of the essay and of my need to write it.

I like the title, ?On Bearing Witness.? Can you explain the significance of it?

Titles are one of the hardest things for me as a writer. I just find them so difficult, always, and this one was no exception. I thought about what I?d been able to give to my father while he was so sick and actually dying, and that was simply being present. My father was an extremely generous man, generous both in the abstract and in the concrete. He was, as many people have said, the kind of man who would ?give you the shirt off his back.? And so he was generous in his sickness and death as well. I am so grateful to my father that he allowed me in, that he allowed me to be present for some of the things that took away so much of his dignity and self-preservation. He never said, ?Don?t come.? And he could have. His pain was intense and unrelenting, and yet he would talk with me, with all of us, and express his feelings about leaving us. He led the way for us, quite honestly. His ability to speak his feelings, to emote, to cry, allowed us to, as well. He let me see all of that, and I am grateful, as painful as the memories are, to have been there. I would not change that aspect of things at all, my being there. I saw it as my role to take it all in and to hold it for him, in some small way.

Your title alludes to the fact that you explore what it means to be a family member or friend watching the end of someone else?s life. What is the role of that person, that witness, in the death process?

I did a great deal of reading once the cancer became terminal. One of the things that struck me most was the notion in ?On Death and Dying? that the dying person must say goodbye to everything he or she has ever known, even his/her memories. How could that even be possible? I thought. How could anyone do that? I remember reading that and feeling this overwhelming sorrow for my father. I just sobbed. Afterward, I tried to bear in mind what I could do to help him, and mostly, I tried to listen. I tried, as best I could, to imagine how it must feel to wake up each day and know that one will be as bad or worse than the one before, and that the next will be also, and on and on. I tried to imagine it, though of course I couldn?t in the way that he could. I?d always been deeply connected to my dad emotionally, as we were a lot alike in that way, and I would try to anticipate what he might need to say and to offer him the opportunity to say it. Also, I think it is the responsibility of the witnesses to educate themselves about the dying process and to advocate on the person?s behalf. There will come a point at which the dying person will no longer be able to express what he or she needs or wants, and the witness must be vocal.?

You talk about the loss of dignity and independence in ?On Bearing Witness.? Do you think that could be fixed or addressed by the palliative care system, or do you view it more as a natural or unavoidable function of death?

We often speak of ?death with dignity,? but I don?t know exactly what that means. The body fails, and there are many unpleasant parts to be dealt with in its failings. There is no time for squeamishness. It would behoove us all to dispense with certain taboos, but then we would be talking about an overhaul in the culture, which of course is not likely to happen. Any kind of dialogue that can begin about dying to demystify it would be helpful, of course, and that is what this book is trying to do. But people do not want to talk about death or about the mechanics that actually involve dying. There is a great resistance in most people because we do know that we are all going to get there, but mostly we?d rather not think about that, thank you very much. It seems to me that opening up a dialogue between patients? loved ones and palliative care workers can only be beneficial.

You write about being relieved that your father would die at home. Why do you think that made such a difference to?you, and/or to your father?

He wanted to get out of there so badly. ?Please,? he said, ?get me out of here. They?re killing me.? It?s important to understand that my father had been admitted to that hospital either by ambulance or through surgery or complications umpteen times. By the time he died, so many of the nurses knew him. As good as any of the hospitals may be, they are sterile and isolating places. When I asked one of the nurses how my father was managing at night, she said, ?Oh, don?t worry, I look in at him, and he is peaceful.? Now, I knew that not to be the case. I wanted him to die in his own surroundings, among his own things, with my mother there to care for him, with us there to be with him as much as we could. I wanted to be there at the end, even, but I was not. Nor was my mother. I believe he chose my brother, and afterward I hugged my brother and said, ?I?m so glad it was you. I knew it was going to be you.? He always seemed more at ease when my brother was there, as my brother is a big guy, very much in control, very much someone you want beside you in a crisis. I didn?t want his last breath to come when he was alone in a sterile room, where perhaps he wouldn?t be found immediately. I wanted him to be home, with my mother, most of all, because that is where he wanted to be, with her. Always with her. And even though she wasn?t there at the exact moment of his death, she was there for all of it, and I know he knew that and would have wanted it that way, to be in the warmth of his own home, among the things and the people he loved the most. In that way, if in no other, his death was kind.

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Jasmine Turner, an editorial assistant for Creative Nonfiction, is a junior at the University of Pittsburgh studying English nonfiction writing, political science and French.

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