Frederick M. Chen, MD

Patients can experience great difficulties in navigating the US medical system. They are faced with complicated decisions in a system that is often fragmented, episodic, and disease oriented.¹ As highlighted by the recent Institute of Medicine report,² the system’s complexity contributes to medical errors that harm patients. The patient with a physician family member, however, has a unique advocate for their health care.³ The physician family member has intimate knowledge of the patient, as well as an expert understanding of the system.⁴ Although previous studies have documented the conflicting roles of physician family members, we used the perceptions of these informed observers to illuminate the experiences of patients in the current system.⁵

Using a key informant interviewing technique,⁶ we solicited the chairpersons of academic departments of family medicine for their personal experiences with the health care system on the occasion when their own parents were seriously ill and required medical care. These family physicians were experts in coordination of care, continuity of care, and navigating the health care system. They were uniquely positioned to comment on the process and quality of care that their fathers received.^4,7

Our sample is unique, and the experiences of these physicians are not directly generalizable to the population at large. These physician family members, however, offered a special opportunity to observe the performance of the health care system on a personal level. We hoped that their insights would illuminate the challenges facing patients in our health care system and point to strategies that could improve care.

Methods

Using E-mail, we solicited responses from the chairs of every academic allopathic family medicine department in the United States. E-mail addresses were obtained from the national listserve of the Association of Departments of Family Medicine. The respondents were eligible to participate if either of their parents had experienced a serious or terminal illness episode within the past 5 years. Since this was a key informant analysis, we purposely sought and were satisfied with a sample of volunteers and did not pursue methods of increasing the response rate. All physicians provided verbal and written consent to participate in our study. The study was approved by the University of Washington Human Subjects Review Committee. Particular effort was taken to ensure the confidentiality of the physicians. Personal identifiers were removed from the transcripts, and the authors have been cautious to avoid reporting identifiable details of the individual cases.

One of the authors (F.M.C.) conducted in-depth, semi-structured interviews with each of the study physicians using a field-tested interview template.⁸ The instrument consisted of open-ended questions and focused on the physicians’ responses to their fathers’ care Table w1.* The interviews began with the physicians’ narratives of their fathers’ illnesses. All interviews were conducted by telephone and were audiotaped and transcribed. The initial interviews lasted 45 minutes to 1 hour.

Two of the authors (F.M.C., L.A.G.) read, coded, and labeled the transcripts for themes, using an open-coding technique. Using an iterative analysis, themes were expanded and refined during rereading of the transcripts by all 3 authors.⁹ After all themes were identified, the study physicians were re-interviewed. The second interviews ensured the reliability of the initial interviews but also served to validate and clarify themes that had emerged during the analysis.^10,11 The second interviews, lasting 15 to 20 minutes, were also audiotaped, transcribed, and analyzed.

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.

“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.

During the initial interviews, many physicians told their narratives as experiences with specific individuals and did not describe their observations as system-level issues. During the analysis, however, it became clear that the common themes reflected system-level characteristics. When the physicians were re-interviewed, there was universal agreement that the structure of the health care system contributes to poor communication by individual care providers and to medical errors. This observation focuses on the challenge of changing individual provider behavior without addressing the system within which the provider works.

We feel that our sample of 8 physicians was sufficient for a key informant analysis. The pool of potential informants was limited by their unique position and the requirement of having a parent with a recent serious illness episode. This physician sample was deliberately and purposefully selected. The stature of the respondents created a potential bias, a “VIP syndrome” for these physicians’ fathers.³ Rather than receiving excessive care, however, some of these patients received suboptimal or even antagonistic care.

As sons and daughters, it is possible that these physicians may be embittered about their fathers’ care, leading them to exaggerate or overstate their observations. The illness of a parent evokes intense emotions, but it also tends to rivet attention to the care being received.⁷ Because our informants also acted as participant-observers, it is possible that their observations lacked insight into the harm they may have caused by intervening in their fathers’ care. Despite these factors, the themes of advocacy and rescue were common to all of the physicians. The theme of abiding inner discord was strengthened by its enduring nature over time. By confirming these themes through re-interviews, we are confident that they are robust and valid for each individual as well as for the entire sample. Although these physicians’ reports of their experiences should not be considered generalizable to the population at large, they are informed expert opinions that raise serious concerns about how well the health care system is serving patients.

Our results are consistent with the burgeoning demand for improvement in our current health care system. Health care systems could affirm the continued presence of one physician who is in charge of the patient’s care and accountable to the patient and the patient’s family. Payment systems and health plan rules should not force discontinuity across different care settings. Physicians who have a relationship and previous experience with patients should be encouraged to remain involved in their care during hospitalizations. Health care begs to be rebalanced to emphasize the importance of knowing the patient at least as well as the disease process and medical technology.

We also found that these physicians’ experiences had a profound personal impact. The study physicians expressed a sense of being silenced by the system and were grateful for the relief afforded by telling their stories. This suggests that physicians and the systems they work in should create mechanisms for the discussion of troubling patient care events.

The personal experiences of these physicians hold special importance to other physicians, because they highlight the critical roles physicians are expected to play in a superior health care system. Many of the problems identified by these senior family physicians were manifest in physicians’ behaviors. Physicians should be able to express their ambivalence about problematic health care processes and encourage an environment that avoids blaming and promotes improvements. Rather than waiting for system-level change to improve health care, physicians could examine and change their own behaviors and practices.

Acknowledgments

Our paper is dedicated to Mary Lou Green, whose care at the end of her life inspired this study. The authors are indebted to Priscilla Noland and Michelle Perez for their assistance with the manuscript.

Patients can experience great difficulties in navigating the US medical system. They are faced with complicated decisions in a system that is often fragmented, episodic, and disease oriented.¹ As highlighted by the recent Institute of Medicine report,² the system’s complexity contributes to medical errors that harm patients. The patient with a physician family member, however, has a unique advocate for their health care.³ The physician family member has intimate knowledge of the patient, as well as an expert understanding of the system.⁴ Although previous studies have documented the conflicting roles of physician family members, we used the perceptions of these informed observers to illuminate the experiences of patients in the current system.⁵

Using a key informant interviewing technique,⁶ we solicited the chairpersons of academic departments of family medicine for their personal experiences with the health care system on the occasion when their own parents were seriously ill and required medical care. These family physicians were experts in coordination of care, continuity of care, and navigating the health care system. They were uniquely positioned to comment on the process and quality of care that their fathers received.^4,7

Our sample is unique, and the experiences of these physicians are not directly generalizable to the population at large. These physician family members, however, offered a special opportunity to observe the performance of the health care system on a personal level. We hoped that their insights would illuminate the challenges facing patients in our health care system and point to strategies that could improve care.

Methods

Using E-mail, we solicited responses from the chairs of every academic allopathic family medicine department in the United States. E-mail addresses were obtained from the national listserve of the Association of Departments of Family Medicine. The respondents were eligible to participate if either of their parents had experienced a serious or terminal illness episode within the past 5 years. Since this was a key informant analysis, we purposely sought and were satisfied with a sample of volunteers and did not pursue methods of increasing the response rate. All physicians provided verbal and written consent to participate in our study. The study was approved by the University of Washington Human Subjects Review Committee. Particular effort was taken to ensure the confidentiality of the physicians. Personal identifiers were removed from the transcripts, and the authors have been cautious to avoid reporting identifiable details of the individual cases.

One of the authors (F.M.C.) conducted in-depth, semi-structured interviews with each of the study physicians using a field-tested interview template.⁸ The instrument consisted of open-ended questions and focused on the physicians’ responses to their fathers’ care Table w1.* The interviews began with the physicians’ narratives of their fathers’ illnesses. All interviews were conducted by telephone and were audiotaped and transcribed. The initial interviews lasted 45 minutes to 1 hour.

Two of the authors (F.M.C., L.A.G.) read, coded, and labeled the transcripts for themes, using an open-coding technique. Using an iterative analysis, themes were expanded and refined during rereading of the transcripts by all 3 authors.⁹ After all themes were identified, the study physicians were re-interviewed. The second interviews ensured the reliability of the initial interviews but also served to validate and clarify themes that had emerged during the analysis.^10,11 The second interviews, lasting 15 to 20 minutes, were also audiotaped, transcribed, and analyzed.

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.

“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.

During the initial interviews, many physicians told their narratives as experiences with specific individuals and did not describe their observations as system-level issues. During the analysis, however, it became clear that the common themes reflected system-level characteristics. When the physicians were re-interviewed, there was universal agreement that the structure of the health care system contributes to poor communication by individual care providers and to medical errors. This observation focuses on the challenge of changing individual provider behavior without addressing the system within which the provider works.

We feel that our sample of 8 physicians was sufficient for a key informant analysis. The pool of potential informants was limited by their unique position and the requirement of having a parent with a recent serious illness episode. This physician sample was deliberately and purposefully selected. The stature of the respondents created a potential bias, a “VIP syndrome” for these physicians’ fathers.³ Rather than receiving excessive care, however, some of these patients received suboptimal or even antagonistic care.

As sons and daughters, it is possible that these physicians may be embittered about their fathers’ care, leading them to exaggerate or overstate their observations. The illness of a parent evokes intense emotions, but it also tends to rivet attention to the care being received.⁷ Because our informants also acted as participant-observers, it is possible that their observations lacked insight into the harm they may have caused by intervening in their fathers’ care. Despite these factors, the themes of advocacy and rescue were common to all of the physicians. The theme of abiding inner discord was strengthened by its enduring nature over time. By confirming these themes through re-interviews, we are confident that they are robust and valid for each individual as well as for the entire sample. Although these physicians’ reports of their experiences should not be considered generalizable to the population at large, they are informed expert opinions that raise serious concerns about how well the health care system is serving patients.

Our results are consistent with the burgeoning demand for improvement in our current health care system. Health care systems could affirm the continued presence of one physician who is in charge of the patient’s care and accountable to the patient and the patient’s family. Payment systems and health plan rules should not force discontinuity across different care settings. Physicians who have a relationship and previous experience with patients should be encouraged to remain involved in their care during hospitalizations. Health care begs to be rebalanced to emphasize the importance of knowing the patient at least as well as the disease process and medical technology.

We also found that these physicians’ experiences had a profound personal impact. The study physicians expressed a sense of being silenced by the system and were grateful for the relief afforded by telling their stories. This suggests that physicians and the systems they work in should create mechanisms for the discussion of troubling patient care events.

The personal experiences of these physicians hold special importance to other physicians, because they highlight the critical roles physicians are expected to play in a superior health care system. Many of the problems identified by these senior family physicians were manifest in physicians’ behaviors. Physicians should be able to express their ambivalence about problematic health care processes and encourage an environment that avoids blaming and promotes improvements. Rather than waiting for system-level change to improve health care, physicians could examine and change their own behaviors and practices.

Acknowledgments

Our paper is dedicated to Mary Lou Green, whose care at the end of her life inspired this study. The authors are indebted to Priscilla Noland and Michelle Perez for their assistance with the manuscript.

Patients can experience great difficulties in navigating the US medical system. They are faced with complicated decisions in a system that is often fragmented, episodic, and disease oriented.¹ As highlighted by the recent Institute of Medicine report,² the system’s complexity contributes to medical errors that harm patients. The patient with a physician family member, however, has a unique advocate for their health care.³ The physician family member has intimate knowledge of the patient, as well as an expert understanding of the system.⁴ Although previous studies have documented the conflicting roles of physician family members, we used the perceptions of these informed observers to illuminate the experiences of patients in the current system.⁵

Using a key informant interviewing technique,⁶ we solicited the chairpersons of academic departments of family medicine for their personal experiences with the health care system on the occasion when their own parents were seriously ill and required medical care. These family physicians were experts in coordination of care, continuity of care, and navigating the health care system. They were uniquely positioned to comment on the process and quality of care that their fathers received.^4,7

Our sample is unique, and the experiences of these physicians are not directly generalizable to the population at large. These physician family members, however, offered a special opportunity to observe the performance of the health care system on a personal level. We hoped that their insights would illuminate the challenges facing patients in our health care system and point to strategies that could improve care.

Methods

Using E-mail, we solicited responses from the chairs of every academic allopathic family medicine department in the United States. E-mail addresses were obtained from the national listserve of the Association of Departments of Family Medicine. The respondents were eligible to participate if either of their parents had experienced a serious or terminal illness episode within the past 5 years. Since this was a key informant analysis, we purposely sought and were satisfied with a sample of volunteers and did not pursue methods of increasing the response rate. All physicians provided verbal and written consent to participate in our study. The study was approved by the University of Washington Human Subjects Review Committee. Particular effort was taken to ensure the confidentiality of the physicians. Personal identifiers were removed from the transcripts, and the authors have been cautious to avoid reporting identifiable details of the individual cases.

One of the authors (F.M.C.) conducted in-depth, semi-structured interviews with each of the study physicians using a field-tested interview template.⁸ The instrument consisted of open-ended questions and focused on the physicians’ responses to their fathers’ care Table w1.* The interviews began with the physicians’ narratives of their fathers’ illnesses. All interviews were conducted by telephone and were audiotaped and transcribed. The initial interviews lasted 45 minutes to 1 hour.

Two of the authors (F.M.C., L.A.G.) read, coded, and labeled the transcripts for themes, using an open-coding technique. Using an iterative analysis, themes were expanded and refined during rereading of the transcripts by all 3 authors.⁹ After all themes were identified, the study physicians were re-interviewed. The second interviews ensured the reliability of the initial interviews but also served to validate and clarify themes that had emerged during the analysis.^10,11 The second interviews, lasting 15 to 20 minutes, were also audiotaped, transcribed, and analyzed.

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.

“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.

During the initial interviews, many physicians told their narratives as experiences with specific individuals and did not describe their observations as system-level issues. During the analysis, however, it became clear that the common themes reflected system-level characteristics. When the physicians were re-interviewed, there was universal agreement that the structure of the health care system contributes to poor communication by individual care providers and to medical errors. This observation focuses on the challenge of changing individual provider behavior without addressing the system within which the provider works.

We feel that our sample of 8 physicians was sufficient for a key informant analysis. The pool of potential informants was limited by their unique position and the requirement of having a parent with a recent serious illness episode. This physician sample was deliberately and purposefully selected. The stature of the respondents created a potential bias, a “VIP syndrome” for these physicians’ fathers.³ Rather than receiving excessive care, however, some of these patients received suboptimal or even antagonistic care.

As sons and daughters, it is possible that these physicians may be embittered about their fathers’ care, leading them to exaggerate or overstate their observations. The illness of a parent evokes intense emotions, but it also tends to rivet attention to the care being received.⁷ Because our informants also acted as participant-observers, it is possible that their observations lacked insight into the harm they may have caused by intervening in their fathers’ care. Despite these factors, the themes of advocacy and rescue were common to all of the physicians. The theme of abiding inner discord was strengthened by its enduring nature over time. By confirming these themes through re-interviews, we are confident that they are robust and valid for each individual as well as for the entire sample. Although these physicians’ reports of their experiences should not be considered generalizable to the population at large, they are informed expert opinions that raise serious concerns about how well the health care system is serving patients.

Our results are consistent with the burgeoning demand for improvement in our current health care system. Health care systems could affirm the continued presence of one physician who is in charge of the patient’s care and accountable to the patient and the patient’s family. Payment systems and health plan rules should not force discontinuity across different care settings. Physicians who have a relationship and previous experience with patients should be encouraged to remain involved in their care during hospitalizations. Health care begs to be rebalanced to emphasize the importance of knowing the patient at least as well as the disease process and medical technology.

We also found that these physicians’ experiences had a profound personal impact. The study physicians expressed a sense of being silenced by the system and were grateful for the relief afforded by telling their stories. This suggests that physicians and the systems they work in should create mechanisms for the discussion of troubling patient care events.

The personal experiences of these physicians hold special importance to other physicians, because they highlight the critical roles physicians are expected to play in a superior health care system. Many of the problems identified by these senior family physicians were manifest in physicians’ behaviors. Physicians should be able to express their ambivalence about problematic health care processes and encourage an environment that avoids blaming and promotes improvements. Rather than waiting for system-level change to improve health care, physicians could examine and change their own behaviors and practices.

Acknowledgments

Our paper is dedicated to Mary Lou Green, whose care at the end of her life inspired this study. The authors are indebted to Priscilla Noland and Michelle Perez for their assistance with the manuscript.