“The post-op course became fairly stormy with pulmonary congestion, poor blood gases. A variety of specialties were consulted, and there were plans for a thoracentesis—this, that, and the other thing going on. Finally I couldn’t stand things much longer and I wrote 2 pages of orders. I essentially discharged him from the hospital and got him back involved with his family physician. Nobody was looking at the whole picture, and it was clear to me that I had to get him out of there.” (Physician D)
Interviewer: “Did you ever feel conflicted about intervening in that role?”
“Oh, it was terrible! On the other hand, you know at the end I was so pushed that I really felt that if I didn’t do something that he would die of iatrogenesis.” (Physician D)
Abiding Inner Discord
There was a strong sense of discord about the performance of the health care system. Invariably, these physicians observed deficiencies in the care of their fathers, and they recognized that the system was not performing or responding in the way it should.
“[You are] frustrated by the fact that you know that they can do a lot better when they really want to. I have 20 years at this place, and damn it, the least they can do is treat my father well. If this is the best they can do, what does that say about the average treatment that the average patient gets?” (Physician F)
The physicians expressed concern for the experiences of other patients. For the most part, they felt that their fathers benefited from their personal involvement. That option, however, is unavailable to most patients.
“It scares the hell out of me because what I have come to conclude is that the system’s working well for my father is the exception, rather than the rule. In the other family members that I have been involved with—my grandmother, my uncle, and most recently my mom—my level of involvement was more than it would have been otherwise, because the system was functioning so poorly. It is very scary to me, because 99% of the people accessing the systems don’t have anybody advocating for them that way.” (Physician G)
These physicians were not just malcontents within the health care system. They carried a deep ambivalence about their views of health care. They struggled to reconcile their professional pride with the imperfections in their fathers’ care. Some of the physicians questioned their own involvement in the profession and system that can produce such incongruities.
“I just feel kind of helpless in the face of what [patients] actually run into. You know, when they come back and say, ‘I had a terrible experience.’ I feel responsible for that. I feel embarrassed to be a part of a profession that doesn’t see that as something that’s important.” (Physician B)
“I think he actually got better treatment because of his family medical web of connections than most people would get. And I have some sense of discord about that. We spend so much, we have so many doctors, why is it so hard to make the system work?” (Physician A)
The persistence of their feelings of inner discord was remarkable. Months after the initial interviews and sometimes years after their fathers’ illness episodes, all the physicians expressed some degree of ongoing personal trauma, sometimes silently harboring painful doubts.
“Yeah, there’s some lingering doubt that I continue to think about. And I keep thinking that it would be harder on my mother if I pursued it than it is to leave it alone. If it were just me, I might actually go to a lawyer and ask them to request the records. I still think I wouldn’t know what I wish to know but it might give me some sense of closure on it.” (Physician E)
“What’s interesting is that what you’re looking for are larger issues and themes, but at a microlevel the value of doing this is an opportunity to at least tell the story one time. Because you don’t tell it to people who were there, and you don’t tell it to people who don’t ask you. So it remains something inside of you that is hard.” (Physician B)
Discussion
Even patients with intimate and knowledgeable advocates face challenges in receiving optimal medical care. The physicians in this study, in the unique position of being senior family physicians and concerned family members, felt strongly that patients need an informed, accountable advocate; each witnessed events and situations where such an advocate was absent when needed. Although they were initially reluctant to be involved in their fathers’ care, obstacles to optimal care compelled many of the physicians to intervene. As a result of these experiences, the physicians shared an ongoing inner discord about the performance of the health care system for all patients.