Eight family physicians were willing to participate, met the eligibility criteria, and consented to be interviewed. Geographically, the physicians were widely distributed. The mean age of the study participants was 47.5 years (range = 43 - 54 years). Six of the physicians were men. The physicians had been in practice for an average of 19.4 years. Although they had been solicited for the illness episodes of either parent, all participants related experiences with their fathers. Of the 8 physicians’ fathers,5 died during or shortly after the reported illness episode.
Results
All of the physicians witnessed and reported challenges in the medical care of their fathers. Although the details of each story were quite different, there were common themes that emerged from all of the narratives Table 1. The physicians described their fathers’ need for an advocate, being compelled to act on behalf of their fathers, and an abiding inner discord about the care their fathers received.
Need for an Advocate
All of the physicians described the importance of an advocate for their fathers, someone who could navigate and coordinate his medical care.
“I think the system is so complex, that what families need are guides, people who understand the system and who can work with the individual and the family and then translate that into getting the system to work the way it needs to.” (Physician A)
As a patient’s medical care becomes increasingly complex, the advocate becomes more important and, ironically, more elusive. In many cases the responsibility for being the advocate fell to the physician family member.
“I felt that somehow I had to get in there and protect my dad, protect my family, and advocate for them. Knowing that everything that had been done was going wrong, it was hard. So the system really didn’t give me someone who I could talk to, who would understand me, understand our family, and understand the issues.” (Physician B)
“My brother’s statement was, “I don’t see how any family can go through something like this, if there’s not a family member that’s a physician.” (Physician C)
Compelled to Rescue
The physician family members expressed reluctance about taking the responsibility of being their fathers’ medical advocate. Many had strong feelings that they should not be involved with their fathers’ care.
“I knew I could not view the situation objectively. I really tried to walk that line of being just a concerned family member—but when things are so blatantly obvious, I finally couldn’t stay in the bushes anymore. I had to come out. You know, what good is all that training if you can’t help your own family?” (Physician D)
As a result of the obstacles to the optimal care of their fathers, the physicians found themselves taking an active role in their fathers’ care. There were many different challenges that compelled the physicians to intervene on behalf of their fathers. For example, they described a lack of responsiveness by providers, poor communication and confusion, a loss of continuity of care, and medical mistakes. Poor relationships between physicians and the patient were present in many of the narratives. In one case, the physician’s father suffered an acute myocardial infarction and was taken to the emergency department.
“And I said, ‘I saw the EKG. It looks like he’s had an MI. He’s been here for almost an hour. He’s not had aspirin or nitroglycerin yet.’ And the ER doc said, ‘Well, that’s what I’m in here to do.’ And I said, ‘Well then don’t spend your time trying to figure out if it’s indigestion or chest pain.’ So I’m sure I got labeled, but I could have been a layperson and known you were supposed to get aspirin and nitroglycerin. I couldn’t believe that they were taking all that time to do that.” (Physician E)
Another physician’s father, who had been sedated, awoke to find a personal keepsake missing.
“The most upsetting thing about the whole thing was [that] they took a very adversarial stance and started blaming us. ‘Well, he’s demented, so he must have thrown it away,’ or ‘In these cases it’s usually a family member who’s taken it.’ And at that point he was just devastated, and he lost hope. He said, ‘Now my cross is gone, and I’m going to die.’ (Physician F)
These physicians had a position of power and control in the system, and they were able to affect the course of medical care of their fathers. One physician’s father was hospitalized for treatment of a pericardial hemorrhage following aortic valve replacement.