Wednesday, April 11, 2007

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.


Anonymous said...

Thank you

Anonymous said...

Great entry. It really captures the difficulty that a physician faces when having to inform families of terrible news.

Anonymous said...

Having spent many a month in hospital rooms, both in the bed and in the chairs next to them, I have often wondered what goes on in the minds of the medical professionals when they are confronted with death.

Your thoughts are most humand and quite eloquent.

Thank you for sharing them.

Derrick said...

Another excellent post, Dr Schwab. As a medstudent preparing to start my rotations in a few months, I find your insights and wisdom valuable beyond measure.

Anonymous said...

Even 16 years later, my mom still raves about how much time my trauma surgeon/coma doctor spent not only with me, his high priority patient because my injury was so severe, but with my husband and with her. I still have all the hand-outs and copies he gave to them, explaining coma, brain injury, and the effects thereof. After I survived my husband said there was a fear that I would never come out of my coma, so there would have been time for them maybe to digest everything, with my doctor's help, if they did have to turn off my life-support.

Anonymous said...

powerful entry. the scene you described was heart-wrenching, and the dissociation familiar. Wonderful post, I'll look forward to the review of the book. I don't think fear of our own immortality is the problem either, if anything it's hubris and society's (and our own) abdication of physicians as end-of-life spiritualists, a trade off for respect as scientists. a bridge between the spiritual and the scientific is so needed, and i think writers, some physicians, and bloggers such as yourself are helping to rebuild it.

but all you need is a lawsuit and a hostile lawyer to shred your humanity again...

Midwife with a Knife said...

That's a great post. Thank you.

The reason I didn't go into gyn-oncology (the gyn-onc docs do the best surgery, and that's pretty cool) is the fact that so many of their patients die from their tumors. I didn't think that I could take care of dying patients all the time and still be able to be the doc I want to be.

Anonymous said...

Dear Doc, I read this post many times over..Thank you. Sometimes, I think, we need straight talk. I know docs never want to take away hope, nor should they..there was a time when I felt I was a personal quest for my doctor. One day after ERCP he threw his hands up in the air. He put his arm around my shoulder, I pulled him to me and I said "This sucks"..he said " yes it does" and walked away. He left me there in my bed. I knew it was the last time I would see him. Did he give up on me? Did he give up on his own limtations? As I lay in recovery I looked over at my friend I said how I wanted my line out and I was done. Was I done because my doc was done? I don't know. It's a very honest and clear feeling you get when you know you need something drastic in order to save you. It's as though coms between docs and their patients happen on some other plane. I think that when a person is sick, you know. You may not want to admit it or hear it or even do anything about it, but you know. We also know that docs are human. I had one doc say to me, don't worry, I'm not touching you with 10 foot pole, but I want to learn from you (and yeah, I sent him my bill) I guess I am saying all of that to say, we understand. Take it easy on yourself, We KNOW you have a sucky job and we appriciate when you show that you are human and that you care and that we are not lost in the sea of patients with a record number, that you know us, take a piece of us with you, we can learn a lot from one another. Please son't be afraid and let hinder you.

Pseudo_Doctor said...

Eloquently written and heart felt post.

The line about sorry being synonymous with sad is an interesting thought to ponder. I mean we all say sorry because that’s the word we've been trained to use in order to express sympathy. And its a conundrum because as much as we want to say empathize instead of sympathize we can't unless we've really been in the situation were apologizing for in the first place.

So with all that said how do you express your feelings towards a person whom you felt you've let down without (whether you did make a mistake or not it’s irrelevant) saying your sorry when that’s what we've been programmed to say since early childhood?

Drew Rosielle MD said...

Sid...a great series of posts. What is the painting you used for this post?

I'm a palliative care doc and constantly am giving bad news. Your description towards the end of the post--about watching yourself give bad news--watching yourself being sensitive and compassionate at the same time as feeling real grief and compassion but also at the same time knowing you have to appropriately 'act,' 'present' that compassion to the family.... This is a common and weird situation I find myself in frequently, yet had never quite named that to myself until I read your description of it--thanks.

Drew from Pallimed.

Sid Schwab said...

Drew: the painting is "By the Deathbed," by Edvard Munch, 1895. And I appreciate your comment about the duality -- or whatever it is -- of being sensitive and of being aware of being sensitive. In saying it, I was being painfully honest, and didn't know if it was a concept unique to me, or not.

Anonymous said...

This is an old post, but I felt that I needed to reply, to share my story. You've shaken loose memories that I've tried to get rid of.

In October of this year I received a call from my mother telling me that my (maternal) grandparents, two great-aunts, and my second cousin were involved in a car accident. She told me to go to work and that she would call me as soon as she heard more. I headed to work and called her back before I walked in the door, asking if there was any news. She sounded odd as she said, haltingly, "Well, we're not really sure, but...your grandfather...hit the windshield, and..." I told her that I would be right there. I raced into work (one of two hospitals where I live) and told my supervisor the situation and left for the other hospital across town. When I walked into the ER and didn't see my mother, I called her again, and saw her emerge from a side door to the ER and beckon me back. I walked in to find my mother, my aunt, a friend of the family, and my second cousin who was in the accident. We sat and talked of nothing important for five minutes before a doctor, a hospital chaplain, and a social worker came into the room. The doctor (who we never saw again after this) asked how we were related to those in the accident, and began to speak about my grandmother (who was medically fine). He mentioned how everything was going to be difficult on her, and how we needed to help her. He paused and said, "Well, you know 'Junior' died at the scene, and..." 'Junior' was my grandfather. I count myself as a person who isn't shaken easily, but you could have dropped a bomb on the building and I wouldn't have noticed. I didn't hear anything else the doctor said as I held on to my mother for fear that I would faint. No warning, no condolences, just "he's dead" and he walked away, leaving us to be stared at by the chaplain and social worker. It was the most horrible experience of my life and it brings tears to my eyes still. I'm so angry at that nameless doctor who couldn't be bothered to break this news to us gently, who didn't seem to care that he was the one telling us that we had just lost a central member of our small family. I'm so angry at him. So angry.

Even though doctors dread making that call or going into the waiting room to tell the family bad news, and even though we sometimes take our grief out on the doctor, later on, once the "smoke" has cleared, we'll remember how that news was delivered. We'll remember whether the doctor said "sorry" or whether he was aloof. We'll remember whether they seemed to genuinely care, or if they walked away immediately afterwards without a backwards glance. I wish I could look back on that moment and feel as if the doctor cared. It would give me so much comfort to know that he had cared enough to take one of our hands and just stand there and be human and share in another's loss. Instead, in my mind, he's taken on the likeness of a machine. I so wish that wasn't the case.

I'm glad that there are/were doctors like you, ones who can take a moment to spare to just be there and help comfort another in a time of loss. You're appreciated, whether we tell you or not. Thank you.

Sid Schwab said...

Dana: thank you for your words, and for taking the time to say what you did. I know how horrible it must have been. And still is.


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