Robert Arnold, M. D.
Professor of Medicine
University of Pittsburgh
"Physician Emotional Reaction to Patient Death: Impact on Patient Care"
January 24, 2001

Dr. Robert Arnold: I am about improving the care of dying patients and there has been a lot of that. You can’t read a newspaper or medical journal without knowing that doctors don’t do a very good job, that patients die in pain, patients die short of breath, their psychosocial issues aren’t addressed. The traditional way to think of education is to say doctors then need knowledge and skills, particularly knowledge because most of our education is cognitive. And there is again a multitude of articles saying that doctors don’t understand pain, they have misperceptions about the role of pain medicines, they don’t know how to translate from one pain medicine to another, that if you look at textbooks there is little in there about dying, and on and on and on. There is also relatively good data that doctors don’t know how to talk to patients about end of life issues. And I was told that Tim Quill, who is probably the world’s expert and my hero, came and talked to you a couple of months ago about how one might begin to have those conversations. And a number of us spend a lot of our time trying to do role playing with how staff and medical students to try to get them to learn those skills. And I used to believe that as long as you taught them knowledge and skills, that you would be okay. And I have come to believe that that isn’t the case anymore. That in fact, part of what keeps them from doing what they can sometimes do very well is their own emotional response and reaction to dying patients.

Now we know about dying patients in our culture and we know about death and dying in our culture and there is this sort of large body of data that tells us that in America we don’t want to think about dying, that we are a death fearing culture. Although, if you’ve been watching television in the last six months, it seems like we are a death-obsessed culture, although I would argue that we are obsessed about other peoples’ deaths rather than our own. Whenever we get close to it, we become a little bit more fearful. That is particularly true in medicine where death is defined as a failure. I have to give you the story that I always tell is when I went to a wake of a patient of mine. You know you go to a wake and the family always shows you around. You are like the trophy doctor. You know, "This is Dr. Arnold. He was such a good doctor." And there is a part of my brain that is going, "Yeah, if I was a good doctor, what would we be doing at the wake?" There is this sort of sense where you are talking to residents and people are getting worse, not because of anything they do, and there is this immense view of guilt and shame. And death is largely viewed as failure. As one of the cardiovascular surgeons told my palliative care nurse, "We are not ready for you yet, we’re not ready to give up." Death is, and I think this isn’t talked about as much, death is also, I think, viewed as loss.

I want to read you a story:

Well, there is a study by Nick Christockess that looked at doctor’s ability to prognosticate a terminally ill patient. You know what he found? He found that the longer the doctor had known the patient, the less able the doctor was able to prognosticate how long the patient had to live. There is another study that looked at patients in an intensive care unit. And it looked at the care they received in the intensive care unit, and how long, for the patients who died, it took to talk about DNR orders. And do you know what they found? They found that if the patient had a primary care physician, a physician who had a relationship with the patient, it took longer to talk about DNR orders and the patient spent more time in the ICU on the ventilator.

Finally, there is a study from the British Medical Journal of general practitioners’ beliefs and attitudes about how to respond to death. They studied 25 general practitioners, only 50% response rate. They found three things. One is that when patients died, physicians lived in mortal fear of errors. Second, that they had had little or no training about bereavement. And third, that the physicians experienced a very personal grief at the loss of a patient. So being an academician, I and Susan Lockster did a study at Harvard and at the University of Pittsburgh where we reviewed all deaths on an internal medicine service at two large hospitals. We randomly selected two deaths a week. And we interviewed the medical student, the intern, the resident, and the attendant about those deaths. We did semi-structured interviews where we asked them what happened, how did it affect you, how did you feel. Then we collected a large amount of quantitative data, much of which I am not going to discuss today.

We had 55 patient deaths. The mean age was 67. 53 of them were female. Most of them had cancer or cardiovascular disease. We had 164 physicians who participated – about a third were attending, a third were residents, and a third were interns. 86% of our physicians participated. That’s pretty incredible. The interviews were, on average, 90 minutes. So they all would talk. We asked them about both this most recent death, as well as we asked them to tell us about the most memorable death that occurred while they were a physician. The first thing we noticed was that there were no medical students involved. And, in fact, we have done a smaller study where we have interviewed third year medical students. But basically medical students were never assigned to dying patients. And when we began to ask the residents about this, because it struck us as weird, they told us that they didn’t give medical students dying patients because there was nothing to do and therefore nothing to learn.

Now the first thing I want to point out, and this was truly amazing to us, is that patients who die in the hospital truly die among strangers in academic institutions. That 68% of physicians knew patient for less than seven days. 32% physicians knew the patient for less than three days. And the mean duration that the doctors knew the patients was 2.5 days. We asked the doctors how close they felt to the patient on a 1-10 scale and they felt a 2.7. Many of the patients were unresponsive. Many patients were in and out of lucidity. And they just couldn’t have a conversation. This quote is typically representative:

I wonder whether we structure hospitals so that doctors don’t have to get to know patients. Because if they knew them and they died, it would really be too painful. And in fact most of the relationships that doctors said that they had were with family. These quotes are again fairly representative:

When you look at the emotions and the themes that sort of came up. The general themes that came up and the general kinds of words that came up were words like:

And when we tried to see whether any themes stuck out, here are the themes:

-Uncertainty and confusion

You see fear of mistakes, and this is again a theme that comes up again and again.

So there is uncertainty and there is guilt and there is relief.

Those were the most recent deaths and interestingly when we asked them how emotionally powerful those deaths were on a 1-10 scale, they said that they were a 3-4. These are the most powerful deaths. And the intensity of those deaths on a 1-10 scale is 8 out of 10. It’s interesting that when you ask them whether the emotional intensity was due to it being disturbing or satisfying, it’s a mixed bag for these doctors when they told us the story of their most emotionally powerful death. What I want to point out that is interesting to us is that they felt much closer to the patients. It was 5 on a 1-10 scale. And there was much more conflict in care in the cases that they described as their emotionally most powerful death. Now it’s not at all surprising that interns have the toughest time. Interns felt the closest to the patient, they felt the greatest need for emotional support, and they felt like they were least likely to receive the support they needed in carting for dying patients.

At out residency program, our residents and our interns get nothing about death and dying. In the ICU’s and the oncology units, we volunteer to do bereavement rounds with them and the ICU doctor told us that it really wasn’t necessary, that they needed to get used to the fact that death was a normal part of being a doctor. We tried to point out to them that that is why we wanted to do the rounds but we didn’t get very far.

These are two quotes from interns:

Medical students are a group that we’re halfway through collecting data. But what we’re finding for medical students is that again we aren’t attending to their experience. And I have to sort of admit that it’s not just mean cruelness that causes this. We don’t attend because we get normalized. I run a palliative care counsel service and we have medical students round with us. And at the end of the second medical student round I asked her how it was and she said, "Oh, this was really a hard month." I said, "Why?" She said, "Well, you know there were all those deaths." And I sat there like duh! I had never in the middle of the month asked her how she was doing. She probably saw 15 patients die. She probably hasn’t seen 15 patients die in her whole medical student career. We do it and have developed whatever coping mechanisms we have or we don’t have and move on. But we didn’t ask her at all.

What we hear from medical students when they tell you about your most powerful death is their first death. And what’s interesting about that is for any of you that haven’t read Renee Fox, she is probably one of the world’s preeminent medical sociologists, she wrote in the late 50s about medical students experiences of doing autopsies. And she wrote about how difficult it was, these psychological experiences and how they needed help, and sort of worries about breaking taboos about dealing with bodies. And it’s interesting because I am doing these interviews because we ran out of money, it’s interesting to hear the medical students talk about their most memorable death, which is a story that sounds just like what Renee Fox talked about. I talked last night at dinner about this medical student who told the story of going down to work up a patient in the IC U. And in the middle of working up the patient there was a code in the room across the hall. And being a medical student he sort of watched because there were too many people in there. And he talked about the experience of sort of watching the code and then seeing the doctors walk out and seeing stuff left on the floor. Then seeing the patient alone in the room and then sort of watching the family come in. Then coming back about an hour later and only having some sort of trash left on the floor and the entire room being empty. He talked about how hard it was for him for the next couple of days because he couldn’t get that image of an empty room out of his head.

I interviewed a medical student three days ago who talked about her most memorable death being a death where she went down with the trauma service on a patient who came into the ER who she had never met who they ran a code for half a hour and it stopped. I asked her what was emotionally memorable about it and she said how they just stopped. She said, "all of a sudden we were just done. And the resident sort of did some small talk and then they went up to do their work. And it was just so weird. It was just sort of all over." And I said to her, "Did anyone ever talk about it?" She said, "No. Well I talked to…the medical students, we sort of talked amongst ourselves about it." But no one ever in the medical education system talked about it. In fact, that’s not true. In the surveys that I have done, there has been one casein which it has been talked about. This largely has been interesting because it has been exceptional.

So John Bletcher asked me, how do people cope. Well, I have to tell you that the residents said that they coped by they stopped thinking about it. The way that you cope is that you deny it. What people would typically say is, "Well I talked to one of my colleagues or I went home and I talked to my spouse or significant other and then it just went away. You know, and talking to you sort of brings it back. And it sort of came up on and off again but it sort of just went away and I haven’t really thought about it much." We then asked whether it impacted their care of patients. For a lot of examples they said it made them realize…for example, the medical students would talk about how things can change so quickly. Or people would talk about how it made them realize that they needed to do certain things in their life. But in general, people didn’t say that they either had a large need to cope or that they needed much support. And we’ve also found that interesting and I’m not sure what to do with it. Whether it means that people, in fact, don’t have needs that we sort of, from reading their transcripts, would identify as needs. Or whether in fact, they don’t want to admit that they have needs because it is so role-determined that it is not the right thing to do.

I do have to tell you about my favorite study of the month, which is a study from Austria, where they interviewed medical students, doctors, and nurses and they asked them how often they cried in the hospital. Which I thought, what a great study! And then they asked them some attitudinal questions about what they thought the consequences were of their crying in the hospital. Interestingly, about a third of people say they cry in the hospital. Nurses say they cry more than doctors. No surprise. It’s unclear whether they cry more or they are just more willing to say that they cry more than doctors. And interestingly, medical students were the most concerned about crying. One of the most concerns were that there would be negative social consequences to them and about them if they cried. In fact, I found that in some of my interviews where people talked about not wanting to cry because they didn’t want to seem weak and they want to show that they can deal with it. We haven’t even begun to look at real practices and how these emotional reactions might affect real practices. There isn’t very good data on anything that has to do with how one’s emotions about patients affect practice. In fact, the best data on that comes from psychiatry and looks at psychiatrists’ reactions to patients who want to commit suicide, and the complex reactions they have to patients who either say they want to commit suicide or who have tried to commit suicide. Again there isn’t further data that looks at outcomes. We hope to begin to look at some of this because we at least believe that it has a lot to do with how doctors act in actual cases.

Finally, I was reminded last night that doctors are also people. So we asked about whether their personal experiences about death and dying influenced their professional care:

Sometimes they said it this eloquently. Sometimes they didn’t. I remember listening to an ICU doctor tell this story about how he came back in the middle of the night to meet with this patient’s family. The patient was about his age. And the patient’s wife was about his wife’s age and had two kids. And he told this is the interview that he also had two kids. And I sort of, the interviewer said to him, "Do you normally come back at night?" He said, "No, I don’t but I thought this was a sort of special case and I really wanted to be there for the family." He didn’t at all put together what seemed clear to us from reading the interview that he came back because this was just like him being in the ICU and his wife. So sometimes we got quotes like this. Sometimes in fact, it was a lot more subtle.

So what does this mean in summary? Well first it means that doctors are strangers caring for dying patients. They have brief transient relationships and discontinuity of care. Second, it means that doctors’ emotional reactions are related to their role in managing the process of dying, that they do have feelings of guilt and relief, that they are particularly worried about adverse and iatrogenic effect, that the quality of relationships is largely with families, and they are concerned about their competence in providing care. And the question I want to leave you with is a question that we don’t really attend to much in medical school or residency or when doctors are out in practice in America, which is – If we really want to change the practice of medicine, if we really believe that doctors ought to be there for patients and develop bonds for patients, then we have to admit that they are going to have loss and sadness. And what are we going to do to care for the doctors and nurses who have to be the caretakers?