Doctor in, and for, the Family?Physicians Reflect on Care for Loved Ones
This commentary examines themes identified in twelve physicians' narratives recounting their experiences in caring for seriously ill family members. In these narratives, physicians describe heavy emotional burdens and other impediments to sound medical decision-making with and for their loved ones. The physicians struggled to balance their roles as physicians and as loving family members, and they employed their professional role in a variety of different ways. Several physicians became personal physicians to their family members, and others deliberately avoided that role. Serving as personal physician to a close family member is widely viewed as a violation of a professional boundary, and adopting that role may expose physicians to sanctions. These narratives offer lessons to physicians regarding their roles in caring for family members and in supporting family members of patients with grave illnesses.
Family, Surrogate Decision-Makers, Consultants, Primary Care Physicians, Professional Boundaries
Like virtually all human beings who live long enough, physicians encounter the serious illness and death of beloved family members and close friends. Unlike the rest of us, however, physicians have expert knowledge of human illness, and most physicians provide medical care for their patients nearly every working day of their lives. In the personal narratives published in this issue of Narrative Inquiry in Bioethics, twelve physicians reflect on their experiences as family members or close friends of patients with grave illnesses. These narratives make clear that physicians face many of the same challenges as other family members in these situations, including dealing with heavy emotional burdens and making major treatment decisions under conditions of uncertainty. The narratives also reveal that physicians face distinctive challenges, most notably difficult decisions about how to balance their familial and professional roles in caring for their loved ones.
In this commentary, I will identify and describe common themes in the stories told by these physicians. I will focus first on the challenges of strong emotions and of difficult treatment choices that physicians share with other family members caring for loved ones who are ill. Then I will survey [End Page 41] the variety of roles chosen by physicians in these circumstances. I will examine the significant professional boundary issues that physicians confront in deciding what roles to adopt. Finally, I will reflect on how lessons learned from these narratives can guide physicians in their relationships with their loved ones and with all of their patients and patients' families.
The emotional burden of serious or terminal illness in a parent, spouse, or child will come as no surprise to anyone who has had that unhappy experience. The narratives in this issue demonstrate that, despite their medical knowledge and multiple relationships with seriously ill patients, physicians are not immune to the emotional toll of grave illness in a loved one. The authors recognize both acute and chronic manifestations of these emotions. In situations of sudden onset or exacerbation of illness in a family member, for example, Joseph Fins describes himself as "stunned," Amos Ritter identifies "feelings of anger and insult," David Alfandre reports that he was "simply overwhelmed," and Michael Rezak writes that he was "emotionally distraught." When illness or disability is chronic and progressive, authors describe "the emotional burden" (Ritter) and the "emotional and physical exhaustion" (Rezak) of caregiving. As described in their narratives, physicians chose multiple different roles in the care of their loved ones, and their emotional experience appears to have depended in part on the roles that they chose.
In addition to emotional challenges, several narratives describe the difficulty physicians encountered in advising loved ones about their treatment choices or making decisions on their behalf as surrogate decision-makers. One might naturally assume that physicians' superior knowledge of disease states and of treatment alternatives and outcomes would make it much easier for them to make treatment decisions than patients and surrogates without that knowledge. Several of the narratives do indeed describe their authors' beliefs that they were able to offer valuable advice to their loved ones about their treatment and to protect them from medical errors. In several other narratives, however, authors recount frustration that they were not able to give confident advice or make confident decisions, either because of their own lack of specific knowledge (Alfandre) or the overall lack of medical knowledge about a particular disease and its treatment (Frances Nadel). My own experience in caring for a family member was very similar to that described by Nadel in advising her sister about treatment options for a rare form of cancer. My wife Ruth and I faced a difficult, probably life-altering choice between whole brain radiation and high dose chemotherapy for treatment of brain metastases from her unusual form of lymphoma. We were surprised to learn that the evidence basis for this choice was very slim. We sought advice from consultants at four cancer centers and received different recommendations from them. Without clear guidance from outcomes research or expert opinion, we made our decision based primarily on our own subjective hopes and fears about the potential benefits and harms of the alternatives. (I am happy to report that the course we chose, high dose chemotherapy followed by an autologous stem cell transplant, although onerous, was successful, and Ruth is in good health fifteen years later.)
A Distinctive Challenge—Choosing among Different Roles
The most pervasive theme of these physician narratives is the authors' challenge in deciding what role they should adopt in caring for their ailing family member, and then carrying out their chosen role. Alfandre describes this challenge as his "identity problem." The authors identify and recommend multiple roles along a continuum from loving family member (only) to personal physician for their relative. Among the many roles these physicians undertook are the following:
• (just) a loving family member
• home (custodial) caregiver
• surrogate decision-maker
• family communicator/educator/"translator"
• "liaison" between family and care team [End Page 42]
• medical advocate/"facilitator"
• emergency medical caregiver
• (paternalistic) medical advisor/guide/ consultant
• long-term personal physician
Several of these roles are natural and uncontroversial choices. In all of the narratives, for example, the authors express their deep affection and concern for their seriously ill loved ones. Three authors (Ritter, Rezak, and Salazar) describe their decisions to take their frail and medically vulnerable fathers into their homes and provide custodial care for them. Several authors describe their role as a surrogate decision-maker for a relative who has lost decision-making capacity, a role delegated to them by family members because of their medical expertise. All of these are roles also commonly accepted by non-medical family members for their ailing loved ones.
The other roles in the list above make particular use of the medical knowledge and experience of these physician-authors. Several authors assumed the role of communicating information about the patient's medical condition and treatment to the patient and to other family members, and helping those family members understand that information. Kathleen Fenton, Frances Nadel, Tania Moerenhout, and Jessica Turnbull all describe this role as a favor and a benefit to the members of their families. Moerenhout took on an expanded role that she describes as a "liaison" between her family and her grandfather's medical team. In addition to explaining the perspective and concerns of the medical team to her family, Moerenhout explained the perspectives and concerns of the family to the team. Some types of communication about serious illness with family members and close friends are much more difficult than others, however. For example, Kate Robins-Browne expresses regret about her hesitancy to warn close friends about her suspicion that their son was suffering from a severe neurodegenerative illness.
Several authors describe how they were able to use their knowledge of the health care system and their personal relationships with colleagues and teachers to facilitate rapid access to specialist consultation and definitive treatment for members of their families. Alexander Kon describes this role as being a "family advocate;" he was pleased to be able to provide this assistance for his niece, but was sad that patients without "insider" connections must often wait longer for treatment and have poorer treatment outcomes. In an analogous situation, Ambika Rao recounts her ability to recognize, as a senior medical student, that an aunt was experiencing a medical emergency and her decision to secure rapid transport to a hospital for intensive care.
Multiple authors wrestle in their narratives with decisions about whether and how to serve as medical advisors to their loved ones, other family members, and medical teams. Several writers worry that their efforts to persuade loved ones to accept or refuse treatment were unduly paternalistic. I acknowledge that this is a possible pitfall for any family member concerned about a loved one who is ill or disabled. My own experience as a family care-giver for elderly relatives, however, suggests that, as elders lose both physical and mental abilities, most rely more and more heavily on loved ones for advice and assistance, and so this kind of paternalism is often justified. More problematic, for several authors, is assuming the role of medical consultant for a loved one at the request of either family members or of treating physicians. Jessica Turnbull, for example, expresses ambivalence about whether to be a niece or a physician to her uncle with throat cancer. Following his difficult dying process, she expresses regret for two things—not taking a more directive role in his care, and not spending more time with him as a loving relative.
Three authors (Ritter, Rezak, and Salazar) describe their experiences as personal physicians for their fathers. Despite their acknowledgement of a "rule" that doctors should not treat family members, these physicians chose to provide direct medical care over a long period to a close family member. Amos Ritter, a family physician, reports that he treats family members, including parents, his wife, children, parents-in-law, a sibling, and aunts, "all the time." Rezak and Salazar, in contrast, became physicians to their fathers after the fathers had become disabled and were living in their physician-sons' homes. All three physicians [End Page 43] describe significant burdens and challenges in being physicians as well as personal caregivers and family members to their fathers, but all express a felt responsibility to take on the physician role. Ritter concludes that, despite the personal price to himself, he provided "the best care" for his father. Michael Rezak describes caring for his father as his "most difficult case," but observes that he could "compartmentalize" his medical and filial roles and that "everything that could be done to minimize suffering and improve his quality of life was done because of my active participation." Sergio Salazar acknowledges errors and even "my medical incompetence" in caring for his father, but also describes several advantages of that care, including his timely assessment of test results, prompt implementation of therapy, increased time with his patient, and the heightened trust between him and his father.
These three authors' decisions to become personal physicians to a loved one stand in marked contrast to three other narratives. David Alfandre describes his struggle, during his young son's critical respiratory illness, between acting as another physician and being a concerned and loving father. He describes feelings of fear, escalating to panic, as his son's condition worsened in the hospital, and he resolves to leave his identity as a physician "behind for a short while, so I could be a father first." In this circumstance, at least, Alfandre viewed his medical training as a liability, and his solution was to consciously embrace the role of a "distraught parent who needed support, education, and patient explanations." As mentioned above, during his pediatric critical care fellowship, Alexander Kon assisted his niece in securing rapid specialist evaluation and then surgery for a brain tumor. He also agreed to be present in the hospital during and after the surgery, and, although his niece came through the surgery very well, Kon wanted to provide additional analgesic and anti-emetic treatment for her. His fellowship director called on the day after surgery, and, Kon reports, "taught me one of the most important lessons of my career." Kon's mentor's advice was not to treat family members. Kon explains the rationale for this practice as follows: "When you are too close, all of the subjective stuff becomes unreliable. Deeply and sincerely caring about your patients is essential, but becoming overly involved benefits no one." Tania Moerenhout, a primary care physician in Belgium, also reports her preference not to be a physician to her grandfather or other close family members. Although she was happy to serve as liaison between family members and her grandfather's medical team, Moerenhout identified a wide gap between her medical and her familial judgments. When her grandfather requests euthanasia (a legal option in Belgium), her medical judgment was that this was probably the best decision and that it respected his autonomous choice, but as a granddaughter she felt devastated by the loss of her loved one.
Medical Care for Loved Ones and Professional Boundaries
As these narratives illustrate, serving as physician to family members is a personal choice made by some physicians. As several narratives mention in passing, it is also an issue discussed in the medical literature and addressed in the policies of medical professional and regulatory organizations. The issue of treating members of one's family is often included in discussion of professional boundaries, that is, limits proposed and adopted to discourage or prohibit inappropriate behavior in therapeutic relationships between health care professionals and their patients (see Gabbard and Nadelson, 1995; Nadelson and Notman, 2002). In my own typology of professional boundaries, for example, I include caring for immediate family members as one example of the category of "personal boundaries," boundaries designed to establish a clear distinction and separation between clinicians' professional relationships with their patients and personal relationships with family members, friends, and others (Moskop, 2016). The general rationale for personal boundaries is the concern that combining personal and professional relationships or blurring the distinction between the two can have deleterious effects on both physicians and patients and can undermine the quality of medical care. This concern takes different forms in different [End Page 44] circumstances—the personal boundary prohibiting sexual relations between physicians and their patients, for example, is designed to protect patients from exploitation by their physicians. The specific rationale for limiting or prohibiting the provision of medical care to members of one's immediate family appeals to various ways that combining the roles of family member and physician can complicate the therapeutic relationship. A parent or child may, for example, be reluctant to disclose sensitive personal health information to one's child or parent who is also acting as one's physician, and family member physicians may choose not to ask about sensitive health information or to perform a complete physical examination. Both Fins and Moerenhout report that their own hopes for survival of their loved one clouded their judgment about what treatment decision was best. Salazar acknowledges that his daily care for his disabled father prevented him from recognizing gradual physical changes and delayed diagnosis of a serious co-morbid condition.
Several major medical professional associations, including the American Medical Association, the American College of Physicians, and the American Academy of Pediatrics, have adopted policies regarding the provision of medical care for close family members (American Medical Association, 2017; Committee on Bioethics, American Academy of Pediatrics, 2009; Snyder, 2012). Both the AMA and the AAP policies assert that physicians should not treat members of their own families, except in three limited circumstances: for minor, short-term problems, in emergencies, and when no other qualified physician is available. The ACP Ethics Manual takes a slightly more permissive position on this issue. It cites both risks of dual relationships and also potential benefits like those described the narratives of Ritter, Rezak, and Salazar. The ACP Manual concludes that physicians should "usually" not enter into these dual relationships, but also suggests that they may do so after careful refection and with some precautions.
Reviews of the literature report that physician decisions like those of Ritter, Rezak, and Salazar to provide medical care for close family members are not uncommon (see Gold et al. 2014; Committee on Bioethics, American Academy of Pediatrics, 2009). Physicians who choose to care for family members, however, should be aware that this practice may expose them to professional and legal sanctions. In my own state of North Carolina, for example, the Medical Board has adopted a position statement that physicians should not treat family members, except in urgent or emergent situations or for nonrecurring acute minor illnesses (North Carolina Medical Board, 2012). This statement concludes with a warning that violation of this position statement may subject licensees to disciplinary action by the Board. North Carolina administrative regulations also expressly prohibit physicians, physician assistants, and nurse practitioners from prescribing controlled substances for members of their immediate families (North Carolina Administrative Code). Honoring that legal prohibition would likely interfere with the ability of physicians like Ritter, Rezak, and Salazar to provide adequate pain management for parents or other close relatives as they approach the end of life.
Lessons to learn
The dozen physician narratives in this issue offer several lessons for interested readers, including physicians, bioethicists, and policy makers. Perhaps the most obvious lesson is a deeper insight into the various struggles that physicians confront when faced with the serious illness of a close family member. The authors provide moving accounts of the strong emotions they experienced and the challenges they faced in making well-reasoned treatment decisions with and for their loved ones. Joseph Fins notes that his experience of his father's death has given him a greater appreciation and tolerance for the confusion and the sometimes-flawed decisions of family members confronting the tragedy of impending loss of a loved one.
The narratives also highlight the challenge for physicians in deciding whether and how to employ their professional role as physicians in the care of their loved ones. The different choices made by these physicians, and the reasons offered for those choices, illustrate continuing disagreement [End Page 45] in practice and theory regarding the propriety of physicians serving as physicians to members of their own families. Professional association policies and the rules of professional regulatory bodies impose strict limitations on providing medical care for close family members, with only limited exceptions. The three narrative accounts of physician-sons who served as both medical and custodial home caregivers for their disabled fathers raise an implicit question about whether this special circumstance should be viewed as another exception to the boundary rule prohibiting medical treatment of one's immediate family.
Finally, an important question for physicians in these circumstances is where and how to draw the line between accepting and refusing the request of a family member or a close friend to become his or her primary care physician. This question is not addressed squarely in the literature or in policy statements. Tania Moerenhout proposes an intriguing strategy for making this decision. She suggests that the physician, and the person making the request, consider what role they would want the physician to play as the requestor approaches the end of life. If the most important role for the physician at that time would be that of a loving family member or friend, Moerenhout reports that she will not become that person's physician. This strategy has promise. It would, I believe, appropriately rule out serving as personal physician for one's immediate family and also for other family members and friends with whom one has a close personal relationship that would complicate and likely compromise an effective therapeutic relationship.
Conflicts of Interest
The author reports no conflicts of interest.