When Patients Become Family
Developing lifelong relationships with families is one of the joys of a career in pediatric cardiology especially when it comes to patients with complex congenital heart disease who require a lifetime of interventions and follow-up. For the pediatric cardiology fellow in training, many of these relationships begin in the hospital either with a neonatal diagnosis of congenital heart disease, during a long admission or by caring for patients who are admitted frequently. During the course of their training, fellows spend a significant amount of time on the cardiac wards and in the cardiothoracic intensive care unit, where they see children and their families at some of the most difficult times of their lives. Fellows are there when the post-op patient arrives to the ICU. They are there when the patient arrests and is emergently cannulated for rescue ECMO. They are there when the patient recovers and is well enough to be discharged home. Through it all, fellows are there.
It is during these times that the fellow begins to develop relationships with the patient and when the patient is sedated or too young to communicate the family. It is during these times that the fellow bonds with the siblings learning their favorite colors, TV shows and pastimes. It is during these times that the fellow is not only a physician, but having lived most of the patient's hospital course with the family, a friend. This begs the question: how does this newfound connection affect one's professional relationship and obligations?
In medicine, it is generally accepted that physicians should avoid participating in the care of their ailing relatives. This is thought to apply to immediate family members, with extension to close friends where appropriate. But what of patients who become like relatives? Is there a code of conduct a physician is expected to follow in these situations?
According to the tenets of medical ethics, there is a conflict of interest when physicians attempt to "doctor" their relatives, as the ability of the former to remain objective is compromised. It is argued that the physician's personal feelings may influence his or her professional assessment and clinical decision-making; as such, physician-family member doctoring is discouraged. When close relationships form between physician and patient, the role of these emotions cannot be ignored. Furthermore, given the field in which we work, this situation is far more likely to arise and pose a problem than physician-family member doctoring. As a specialty, should we be paying more attention to these matters?
It has been suggested that caring for family-member patients may result in increased diagnostic testing and costs. This is likely related to a desire to find answers and optimize treatment options with aggressive monitoring for adverse effects. Do we as physicians do the same for patients with whom we have developed close relationships? Are our ordering habits influenced by relationships with our patients? These are difficult questions to answer.
I recently had the pleasure of being on service for several consecutive weeks, during which time I formed deep relationships with some families. I knew the patients well and advocated strongly for them. I could not help noticing that for some of these patients, I had a somewhat irrational hope hope for a rapid recovery, stellar interval progress and positive outcomes in general. Perhaps it was because I had seen them at their worst and felt they deserved a brighter future. Maybe it was because we all needed something positive to look forward to. Perhaps it was simply because I had welcomed them into my inner circle and I so desperately wanted the best for them. Whether these emotions influenced medical management I cannot say. But I do know that they exist, and cannot be ignored.
While there are no clear guidelines to follow in these situations, it would do us well to be cognizant of these issues and evaluate our ability to provide high-quality, objective care to our patients. We should also use others as a sounding board in the event that there are concerns. In many ways, developing relationships with patients and families can help us become better advocates and may improve the care we provide. However, when the emotions associated with these relationships affect our ability to be objective physicians, we must be honest enough to recognize this and take immediate steps to remedy the situation. After all, we must put the patient first even if from a distance.
This article was authored by Renelle George, MD, pediatric cardiology Fellow in Training (FIT) at Rainbow Babies and Children's Hospital in Cleveland, OH.