Friday, April 13, 2007

On Death. Two.

We went to New York a few years ago, mainly to see a production of "The Iceman Cometh." Expecting to be impressed by Kevin Spacey in the lead role (we were!), I was blown away by Paul Giamatti's portrayal of Jimmy Tomorrow. Near the end he gave a soliloquy of such pain, his emotions naked and raw, that I was moved to tears. So was he. Afterwards, among other things I was left to ponder was what it must be like -- how is it possible? -- to do that night after night, to tap into those feelings so deeply as to move himself to tears, repeatedly. Is it just acting, or is he there each time? Is it as cathartic to him as it was to me? Can he move others so, without moving himself? Is it exhilarating, or exhausting? Could it be neither? As an analogy, perhaps it's a bit off; yet that's what came to my mind in thinking of my role in the death of a patient. It's not that it's an act -- for me at least, it is anything but. Yet if there are courses in talking to patients and families about death, books about it, doesn't that mean that for some health-care professionals, dealing with terminal illness and death can be scripted? But having a script is not enough; there are bad actors and good ones. To make it happen takes more than intention. I was always there. But -- confessional -- I was also always aware. The meta medicine man. Maybe that's how to do it and survive.

I'm not doing the dying. Nothing in my position as physician is as hard as what the patient and family do. In trying to delve into this doctors-and-death subject, I don't pretend otherwise, and I accept that some might see the whole enterprise as a self-serving sympathy-fest. Perhaps. It's something I'm trying to understand, myself. But I see it as an important inquiry, involving pain, preservation, humanity in its essential good and bad. Fundamental. And if (some) doctors need to do a better job of it -- and if it's possible to get them to -- then at some level we're talking about teaching compassion. Which strikes me as bizarre, albeit necessary.

I vaguely recall some words in medical school about dealing with the dying. The term "healer" doesn't have only to apply to beating back disease: whether that's the exact message they were sending us or not, it seems to be what I took away. Such a message falls on fertile soil, or it doesn't. I don't think I needed to be told that continuing connection with the dying ought to be part of the job; on the other hand, there are plenty of ways to shirk it. And, for that matter, excuses. I have lots of patients that need me; there's no way to spend as much time with a dying patient and his/her family as they'd like. (It's true, of course. I've said that about anyone on whom I've operated: having literally been allowed in, it seems there ought to be an obligation to spend every waking hour with each one.) But it's amazing how little it really takes.

It's at this point that I hesitate in writing about death and doctors. For one, I'm hardly a source of wisdom; I'm no psychologist, no professor. Hell, I'm not even a primary care doc. For another, I'm afraid of it coming out wrong. When I talk about observing myself, I assume I'm not speaking for any other -- much less all -- doctors. If I say I was nice to people but was also aware I was being nice and telling myself how nice it was that I'm being nice, I'm trying to express and deal with the dichotomy I feel: does consciously behaving in a particular way diminish the behavior? A little compassion goes a long way. If you don't have it, fake it. But it's better if you have it.

If saying it doesn't automatically negate it, I believe I always had compassion for my patients; for their fears, for their pain, for living with illness. Or dying with it. It wasn't lack of feeling that I had to overcome; it was the acute sense of failure. If I had a problem looking dying patients and their families in the eye, it was because I felt I'd let them down, and that at some level they must have felt the same way. Guilty, and ashamed, is what I felt, as if an apology were in order. But how do you apologize for letting someone die? So it's in fact very complicated, and I don't intend (now, anyway) either to work through it or to try to understand it in terms of my own upbringing or makeup. As opposed to the author of the book I'll be reviewing (as I mentioned in my previous post), I think doctors' problems over dealing with death have not to do with threats to their own mortality, but with shame. And maybe that explains, in part, my sense of self-observation: in talking with a dying patient or her/his family, I was looking over my own shoulder, accusingly.

Facing the dying and their families can -- and must -- be done. I have, in fact, said I'm sorry. Many times. I suppose the meaning was deliberately vague: in this context, "sorry" means sad more than it implies apology. But it's the word I used. "I'm so sorry this is happening." I know I didn't always speak the truth, but danced around it. If a patient didn't ask if he/she was dying, I didn't always bring it up, and I probably should have. Somehow I'd at least mention that we'd come to a critical juncture and whereas we were going to continue to strive for and hope for the best, plans ought to be made for the worst. Meaning "getting affairs in order." But when they did ask, the answer was yes. And then we'd talk: I'd wait to see what they had to say, or ask what they'd like to say. I'd assure them that I could keep pain away. And sometimes -- both because I meant it and because I assumed they'd like to hear it -- I'd say how much I cared about them and that I'd remember them and the effect they'd had on me. When tears came they were real. But I also noted it in some lizardly part of my brain, and then chided myself for noting it. Was I just a damn phony? If tossing and turning at night over dying patients meant it wasn't phony, it wasn't. But I also slept.

Families need to know things. They often ask, when a patient is unresponsive, if that person can hear them. "I'm sure he's not in pain," I'd tell them. "But at some level I've always thought that there's comfort from hearing a voice. So talk to him. Tell him about your day or remind him about your life together. I think it makes a difference. Touch him. I think he'll know." Where's the harm in that? Waiting rooms outside of intensive care are painful places. I could leave the ICU and turn right to avoid them; or left to see the family and friends. In a hurry often, I turned right. But at least once a day I turned left. And sat down (there was a private gathering-room as well into which we'd go for some discussions). It can be frustrating, especially when people keep showing up and asking the same questions, but in fact a lot can be done in only a few minutes. It goes without saying that it's part of the job: but in the ICU there are a lot of doctors involved. Some surgeons I know leave the talking to the intensivists. As painful as it can sometimes be, had I not participated, I'd have felt much worse.

And that's the point: avoiding the dying and their people may seem easier than connecting, but it's a huge mistake. A surgeon can rationalize: my job is to operate and give the best post op care I can. They have other doctors for the other stuff. But it's amazing what sitting down and holding a hand can do for the person attached to each hand. Rightly or wrongly -- I truly don't know -- for me there was a sense of absolution.


Richard said...

Thanks Dr. Schwab.

I had a tough day in med school today and that post reminded me about why I'm here.

Anonymous said...

This is a beautiful and exquisite post. Physicians aiming to diagnose and treat disease, have such a different aim than nurses, who aim to assist patients toward health or to a peaceful death.

To me, the presence of the physician, is the best therapy for the patient and family at the end of life. It speaks to compassion, to presence and to vigil - in other words, not abandoning the patient. I wish that physicians would move away from the notion that dying people in some way represent medical failure. They simply represent worn out or irreparable physiology. Supporting patients and their families through death is truly to experience a privilege and a mystery. I'm also glad that I learned early on that it's perfectly acceptable and healthy to cry - with patients and families, should I need to.

That link of humanity, and the common experience of significance in passing is definitely an act of courage and of compassion.

Thank you for writing and sharing this.

Greg P said...

One of the ways of working through awful situations like someone dying is to begin to realize that as hope truly is gone, and the outcome inevitable, you have to open your arms figuratively (and sometimes literally) and realize that you are now treating not just that person in the hospital bed but that multi-person organism called the family.
So as you go through the science and the medicine of what happened, where things are heading, you begin to look out for the well-being of the spouse, the children, the parents..."How are you doing? Are you getting enough rest? Is there anything we can get for you?"
Sometimes they've been so wound up in what's going on, they've forgotten to pay bills, take care of some basic things, maybe forgotten to eat, and you can find ways to help.

Greg P said...

BTW, Sid, I say the same thing to families about talking, touching their loved one, and I think there's some neurologic basis to it. I've seen patients slowly coming around who do nothing as I'm barking something or other at them, then someone in the family speaks and the head turns, and this can be in someone who otherwise seems to be globally aphasic.

Anonymous said...

Dr. Schwab,
In regard to what a person in a coma or an unconscious person can feel, from the point of view of one who has been there: the unconscious person is extra-extra sensitive to emotion, and that extra sensitivity doesn't go away for a long time after awaking. Much more so than hearing what people are saying to them, the unconscious person senses what people are feeling. Its as if there are eyes and ears over the whole body, but those eyes and ears pick up on emotion. I know it sounds wierd, but the feelings of the person beside you (as the unconscious person) become your own. There are no longer emotional boundaries. Those who visit the unconscious really need to leave their negative feelings (from anything at all) checked at the door. I still have nightmares from people who's feelings weren't positive around me. And all of those feelings that are sensed take on a life of their own and become the world that the unconscious person is temporarily living in. I know this will sound odd, but I think the closest way that I can describe being unconscious/in a coma is like being Dorthy in "The Wizard of Oz." I write this because I feel passionately about new doctors understanding not only the state of mind/spirit of the unconscious person, but I write this because I want new doctors to know the power that they have over the unconscious person. Being in a coma is like being hypnotized. Anything, and I mean anything, that the doctor says to the unconscious person takes on a life of its own within the unconscious person and becomes truth. I knew then that if a person was supposed to die, there was nothing in the world that could save them, and if a person is meant to live, there's nothing in the world that can kill them.

Sid Schwab said...

happyj: thanks for a very important comment. I do believe -- and there's evidence -- that stimulation is important to people in certain kinds of coma. That not only means it's helpful, but, as you point out, the opposite can be true as well. Visitors and healthcare people often talk in front of patients as if they can't hear, and we know that at some level, they do. In the case of the dying, it's harder to say, only because they won't be able to tell us. Still, it makes sense to think and to behave as if what we say and do makes a difference to them as long as they're alive.

Anonymous said...

Dr. Schwab, I came into your blog a few hours ago, and found the last post I'd seen, and began to read from that point forward. I intended to catch up on everything you'd written, and then leave a comment on the most recent post ... however, I can't get past this one without saying something.

I wish that, when I've lost people I loved, you had been there ... and I hope that, if I'm ever in a position to receive that kind of news, that it will come through someone like yourself.

Thank you for sharing all of that. I hope you'll consider including it in your next book.

Anonymous said...

July '03, I was dying in a hospital bed at the moment my doctor came in to check on me. I saw his face and I knew in that moment that if I let go, he would blame himself for the rest of his life--when it absolutely wasn't his fault. I saw in his face how deeply he cared about me, and I knew I couldn't do that to him.

My husband had no hope of my survival, and I'll echo what happyj says about the impact of the emotions of those around the patient: he and I love each other, but without his hope there was nothing left for me to hang onto. But my doctor--he needed me to live so much, and I needed so much for him not to be in pain for the rest of his life over my death, that that gave me the strength and will to live, gave me the emotion to hang on that I needed, pulled me through that horrendous night.

I have my own book out now, and the final paragraph thanks that doctor "for helping me want to give back to everybody with what you gave me then. My life."

I gave him a copy. He tried not to cry.

There is great power in compassion and the simple presence of a caring human being. Great power. It changes everything.

Sid Schwab said...

Alison: that's an amazing story. It made me tear up, too. How lucky you and your surgeon are to have had each other.


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