AMA Journal of Ethics^®

Case

Mr. McGuire lives at home with his only child, Jennifer. He is 75, has severe rheumatoid arthritis and a history of atrial fibrillation, for which he takes anticoagulation medication. He can no longer drive and, given his severe arthritis, is dependent on his daughter for his instrumental activities of daily living (IADLs), things like grocery shopping, paying bills, and managing medications, and some of his basic activities of daily living (ADLs), things like bathing, dressing, and walking. Jennifer has been his primary caregiver for two years and has had to cut back on her work hours and significantly decrease social outings.

Jennifer accompanies her dad on a visit to Dr. Peterson, his primary care doctor. As is Dr. Peterson’s standard policy, he initially interviews Mr. McGuire alone. Knowing his patient’s living situation and ever-increasing needs, Dr. Peterson raises the issue of respite care, as he has before. Mr. McGuire reaffirms his absolute opposition to the idea of leaving his home or having others come to help, even as a temporary measure, despite a long discussion about the potential long-term benefits of such an approach. He also asks Dr. Peterson not to even discuss this with Jennifer. After the initial interview, Dr. Peterson invites Jennifer into the exam room and continues with his interview and exam. As he probes deeper, he realizes that Jennifer is more tired than ever and perhaps depressed.

Dr. Peterson strongly believes that, if Jennifer doesn’t get some relief, she may be unable to take care of her dad in the longer term. Forgoing respite care for Jennifer, he believes, could result in Mr. McGuire’s placement in a long-term care facility, which is definitely not what Mr. McGuire desires.

Commentary 2

This case describes a common occurrence in the management of chronic illness, specifically the ability to address the needs of both the care receiver and the caregiver. When they are both looked after by the same primary care physician (PCP), the doctor has a fiduciary responsibility to each one, despite the possibility of conflict of interest. Since a comparable dilemma exists when a PCP provides care to spouses who may be in conflict for any reason, some PCPs have acquired a spectrum of strategies they hope will be useful in such delicate (and stressful) situations.

When a PCP looks after a care receiver and not the caregiver, given the possible enmeshment of the two, the PCP may not be able to provide comprehensive care to the former without some interaction with the latter. Or, framed another way, why wouldn’t it be good medical practice to routinely involve the caregiver? Indeed, in the United States the Health Insurance Portability and Accountability Act (HIPAA) of 1996, while protecting the privacy of patients, permits family members or others directly involved in the patient’s care to be present during medical visits or informed about a diagnosis, treatment, or future plans, unless the patient specifically objects [1, 2].

Given the potentially complex nature of the doctor-patient-caregiver triad, however [3], a challenge exists in ensuring patient autonomy in such cases. As discussed below, addressing this goal does not, however, preclude respectful attempts by a PCP to provide patients with opportunities to see the perspectives, viewpoints, or needs of others.

In a study of Canadian urban-based family physicians (FPs) that Jacqueline Klvana and I conducted, 81 percent of the FPs surveyed reported finding encounters with family caregivers stressful. As few as three such encounters per day were sufficient to result in reported stress [3]. In that study, when the FPs were asked to rank 17 factors that impact on the doctor-patient-caregiver triad, the second most commonly cited concern about the “triad encounter” was caregivers and care receivers with differing agendas and needs. This was a concern for 63.4 percent of the FP respondents. Hence it is easy to imagine the feelings of Dr. Peterson in the aforementioned case.

It has been suggested that physicians require more and broader training about issues pertaining to caregiving [4]. This would include the general principle that visits that incorporate both caregivers and care receivers might flow better if PCPs encouraged them to try to discuss beforehand the matters that will be brought up during the medical encounter. In the case of Mr. McGuire and Jennifer, such an approach may not be helpful initially, since we are given no indication that Jennifer is aware of her growing need for respite.

Dr. Peterson might consider structuring his encounter with Mr. McGuire and Jennifer around the goal of defining care more broadly. He could summarize Mr. McGuire’s health status and limitations, but reframe them by introducing the concept of the Chronic Care Model (CCM), explaining that in this approach both patient and family member(s) join him as part of the treating team [5-7]. Dr. Peterson might elaborate on some advantages of this model, including the opportunity for expanded input on care options and for hearing different perspectives on a treatment plan.

Dr. Peterson could acknowledge that in the CCM there is potential for conflict arising from differences of opinion, feelings, or needs, and that he is comfortable hearing such conflict. While the doctor might in fact not be so comfortable early on, as a member of a collaborative care team he should strive to be as open to different approaches as he would like the caregiver and care receiver to be. Following this sort of overture, Dr. Peterson might close the visit by suggesting that caregiver and care receiver try to reflect, between then and the next visit, what the CCM might mean for each of them.

Dr. Peterson might schedule the subsequent visit a little sooner than usual in order to follow-up on the discussion. At that encounter, initially with Mr. McGuire alone, Dr. Peterson might ask for his reflections on the last visit. Given Mr. McGuire’s previous resistance to the idea of respite care and the reasons for it, one might expect him to verbalize some appreciation for certain aspects of the CCM, but to assert his right to control and decision making. Dr. Peterson should validate this feeling, but perhaps note that Mr. McGuire’s permitting his daughter to be present for the second part of each visit suggests his tacit acknowledgement of the importance of her involvement. This would provide an opening for Dr. Peterson to say to Mr. McGuire, “I am actually worried about your daughter. The last few times you two have been here, she has not been looking well. What do you think?”

This sort of approach would generally provide a doctor a natural opportunity to accentuate the significant contributions made by caregivers. Without specifically raising the issue of respite care, introducing the topic of caregiving could facilitate a discussion about the common problem of what is called “caregiver burden,” which may have negative implications for both caregiver and care receiver [8]. If Mr. McGuire did not agree with Dr. Peterson’s concerns about Jennifer, the doctor might broach having Jennifer take the Brief Assessment Scale for Caregivers (BASC), an empirically derived measure of caregiver burden with good internal reliability and both construct and criterion validity [9]. He could say something like, “Given how common it is for caregivers to get run down and exhausted, I’m wondering whether this may be happening to Jennifer. There is a short paper test to find out. What would you think if I asked Jennifer to fill out this questionnaire?”

Dr. Peterson’s more direct approach in bringing up Jennifer’s health might prompt Mr. McGuire to voice worries, fears, or misconceptions about respite care (e.g., that it might open the door to long-term placement). Each specific concern could then be validated and addressed with specific patient-centered solutions, which may require the assistance of a social worker familiar with respite care. It may be necessary to appeal to Mr. McGuire’s self-interest by reminding him that Jennifer may be able to provide better and longer-term care if her needs are respected and addressed. If Mr. McGuire continues to refuse to acknowledge the possibility of strain on Jennifer, it might help to put him in contact with a care recipient from his or a colleague’s practice who had been in a similar position and had benefited from respite care.

Another approach would be one that draws on principles of couples’ therapy, asking Mr. McGuire if Dr. Peterson can facilitate a discussion about each party’s needs. If he consents, and Jennifer is forthright, this would allow the father to hear his daughter’s own words of distress. Many caregivers need a structured, supportive forum in which to openly vent that, despite their love and commitment to caring, there may be limits to their abilities to support some of the care recipients’ needs or wishes. The honest expression of feelings and needs sometimes becomes the stimulus to a more open recipient-caregiver relationship in that other issues not previously discussed may more easily come to the surface [10].

Should Mr. McGuire continue to refuse any discussion of Jennifer’s situation, Dr. Peterson might send Jennifer a note with a list of community resources for family caregivers and the suggestion that she seek help from her own PCP, a social worker, a psychologist, or other therapist.

The aforementioned interventions may be time-consuming or stressful for PCPs. Some may argue that a social worker should handle all these discussions. However, the potential to be an instrument of growth for a person with chronic illness, the opportunity to foster a more realistic and open dialogue between caregiver and care receiver, and the possibility of a richer doctor-patient relationship should encourage PCPs to address these issues to the extent of their skills and time availability.