On Death. Three.

Before there was hospice, there were house calls. As ought to be obvious, I'm old enough that I've practiced surgery through many changes. Early on, when I could, I had to be my own hospice, sort of. Having observed families dealing with death, both in my practice and in my personal life, I came to believe that there was great benefit from keeping a patient at home as long as possible, even to the end. As exhausting and draining as it often is, the family members who did it seemed to gain a palpable measure of comfort themselves, a deep sense of... satisfaction. (Can we agree forever to ban the word "closure?" What a load of new-age crap that is! In the death of a loved one, there's no such thing. Acceptance, finding a way to live with it: yes. But closure, like it's over, like going through a door and shutting it behind? Please. )

I realize it's a tricky subject: not everyone is able -- for a huge number of absolutely important reasons -- to manage it; nor would I want to imply here, or to have created then, a sense of shame in those who couldn't. What I did was to offer as much help as possible, such as arranging all the needed equipment, a visiting nurse, and (less often than I'd have liked, but as often as I could manage) to visit myself. Irregularly, briefly, when I could; when they didn't live too far away. When I visited, I got as much (more!) out of it as did the patient and family. Sometimes I'd notice something that could be changed for the better. Usually, though, it was just a matter of saying hello, of holding a hand, smiling and touching. And of being impressed at how people managed. More often than not, it was a small house, sparsely furnished, a living-room dominated by a hospital bed and commode. The center of everything, quite literally.

The mechanical stuff -- beds, commodes, assist devices -- was just stuff. It was the idea of the actual moment of death and its aftermath that was the biggest hurdle to overcome in encouraging home care. People needed to know two things: if it got to be too much, all they had to do was call and I'd admit the patient. Some did, some didn't. And they were reassured to know that they could contact a funeral home in advance, and could call them to take the person whenever they were ready. It's a brave undertaking (!). Among the most cherished notes I got from patients and families are those thanking me for encouraging and helping with death at home. More than a gift to the loved one, it's a gift to oneself. With hospice, of course, it's a much more comprehensive program, giving much better support than I ever did, and taking care of all of the details. Thankfully, hospice came to our community around the time I was busy enough that it was harder and harder for me to take the time.

When I decided on med school, I had no idea I'd end up as a surgeon. Good 'ol Doc Schwab, driving his Model T to the homestead, feeling pulses, shaking down thermometers, and delivering the occasional baby on the kitchen table, was how I imagined it. The closest I ever came was making those house calls to the dying. Like the days of old, there wasn't much I could do -- check a bandage, lay my hand on a belly (one in which I'd usually been, earlier) for no particular reason other than a sense of connection to it, write the occasional prescription. Sometimes trying to answer the question, "How much longer, doctor?" But in being there, just being there, I felt more like a true physician than at any time I can think of. Even in failing to cure, there's never nothing to do. I wish there were more time to do it.

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.

On Death. One.

I've been asked to review a book for Medscape. As it happens, its central subject is a theme about which I'd been planning to post at some point, and the reading has jogged me into it. After the review is posted, I think I'll mention more about the book. Meanwhile, some thoughts on death and doctors.

To a physician, death rarely comes unannounced. Because of what we know, we can see it coming before others do. That doesn't make the arrival any easier; in fact, because our essential aim is to cure or prevent disease, death is a repudiation -- perhaps even a humiliation. The author of the book I'm reading sees it as wrapped up in physicians' fear of death, in their need to convince themselves of their own immortality. I don't happen to buy that. But I do agree that, for complicated (because humans are complicated) reasons, we tend to turn away from our dying patients. Willing to do almost anything to stave it off, when death becomes inevitable in those under our care, we either fail to acknowledge it, pressing on no matter the reality, or we begin to detach ourselves from those most in need. Perhaps the "we" is presumptuous on my part: I think the tendencies are widely seen, but maybe I should speak just for myself. I learned by observing others, and by looking inward to my own behaviors.

The need for uncomfortable candor comes in many forms: telling a patient and loved ones of a fatal disease before starting treatment; dealing with a failure of therapy; informing of a sudden and unexpected death. Luckily, the last one is pretty uncommon: cataclysmic, I think it's the worst of all. Wholly unprepared, the family receives a horrible shock, often in the form of a phone call. The worst case of mine was doubly awful.

I'd done a routine operation on Mrs. Jones. In her seventies, diabetic but pretty healthy overall, she'd seen her doc before surgery and had been given the all-clear. On the first post-operative morning, a nurse had done a routine check, found her to be recovering appropriately. The nurse left the room for as long as it took to get a fresh IV bag, and returned to find Mrs. Jones dead. It was a heart attack; the biggest of the coronary arteries, occluded. "Just one of those things," some might say. I was stunned when I got the call, came immediately to the floor, found the husband's phone number. The idea of making such a call, of having to say what happened with no warning and to do so in some sort of gentle way seems so impossible, and is so repellent that there's a temptation to lie: to gain time, to prepare the family by saying she's taken a turn for the worst and they need to come right in. To meet them then, and tell them in person that it's too late. Would that be easier on them? On me? (Probably not on me: as hard as it is to make such a call, it's over -- in the immediate sense -- when I hang up the phone.) (Actually, it isn't: the gut aches after. And there's the need to be there when they arrive, no matter what.)

As I was talking to Mr. Jones on the phone, telling him the crushing news, a daughter arrived on the floor to visit her mom, unaware. Out of the corner of my eye I saw her heading toward the room, knowing there was no one in there but her mom. Like everyone's recurring dream, unable to move fast enough, I tried to signal a nearby nurse, but it was too late. I couldn't have torn away from the husband on the phone, could I? The daughter opened the door and walked in, coming out a moment later. Her shock-shredded face, perforated by the unnaturally widened holes of her eyes and mouth, is carved into my memory, as are her words, said with her hands held inches from her ears, as if unsure whether she wanted to hear the answer: "Is she dead? Oh my god, is she dead?" With the phone in one hand, and my head in the other, I didn't know where to turn. Waving and garbling, I managed to get the attention of the head nurse and point to the poor daughter.

With no preparation at all, the shock carries forward for a long time. I met with that family en mass at the hospital, and weeks later in my office, as they sought explanations. As unpleasant as the meeting was, it's the initial call -- and others like it -- that sticks to my mind like tar. "I have terrible news," it begins. Cliched, formulaic, mechanical. It's as if I'm split in two, watching myself play a role, detached, yet feeling real pain and searching for a way to make a human connection. Out of the blue, it feels like there's no way. The desire not to make the call is nearly overwhelming. Acute, immediate, finite and final, it's impossible, it seems, to do it properly. No way through it for either party. On my side of the phone -- and this applies to all of the death scenarios -- as I speak, I hear myself as if in an audience. As much as I am aware of the humanity of the situation, I also know I'm playing a role. I know the need to be sensitive: and look, here I am being sensitive. Where's the truth of it? If doctors tend to turn away from death, is turning back a matter of willing it? Can it be carried out effectively by rote?


When death gives us time, we can -- if we realize it and face it -- make an enormous difference for our patients and ourselves. The question is if we can do so without chipping steadily away at ourselves. The answer, in my case, is yes. And no. I'll try to write my way through it, next.