OBJECTIVE: The American health care system is complicated and can be difficult to navigate. The physician who observes the care of a family member has a uniquely informed perspective on this system. We hoped to gain insight into some of the shortcomings of the health care system from the personal experiences of physician family members.
STUDY DESIGN: Using a key informant technique, we invited by E-mail any of the chairpersons of US academic departments of family medicine to describe their recent personal experiences with the health care system when their parent was seriously ill. In-depth, semi-structured telephone interviews were conducted with each of the study participants. The interviews were transcribed, coded, and labeled for themes.
POPULATION: Eight family physicians responded to the E-mail, and each was interviewed. These physicians had been in practice for an average of 19 years, were nationally distributed, and included both men and women. Each discussed his or her father’s experience.
RESULTS: All participants spoke of the importance of an advocate for their fathers who would coordinate medical care. These physicians witnessed various obstacles in their fathers’ care, such as poor communication and fragmented care. As a result, many of them felt compelled to intervene in their fathers’ care. The physicians expressed concern about the care their fathers received, believing that the system does not operate the way it should.
CONCLUSIONS: Even patients with a knowledgeable physician family member face challenges in receiving optimal medical care. Patients might receive better treatment if health care systems reinforced the role of an accountable attending physician, encouraged continuity of care, and emphasized the value of knowing the patient as a person.
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.