Physician greets older male patient. Physician greets patient’s adult daughter. Physician asks about patient’s conditions. Physician asks for daughter’s input. Physician does physical examination. Physician makes recommendations and writes scripts. Physician asks patient and daughter if they have questions.
A very normal-sounding outpatient medical visit, right? What could possibly be wrong with this picture? For one thing, unless she is given the chance to speak with the physician without the patient present, the daughter will feel too constrained to express any concerns for fear of upsetting her father. For another, the physician isn’t doing all he can to deputize the daughter–not just as a reliable driver and an implementer of the treatment plan but as a valued partner in care who observes its good and bad effects. But we’re getting ahead of ourselves here.
The main problem with this medical visit is that this doctor is “patient-centric.” I don’t mean that he is focused–as all of us in healthcare and social services should be–on working toward the patient’s (not necessarily the professional’s) goals. I mean that the focus on the patient is so centered—so myopic, really–as to preclude viewing this older person’s health and well-being in the context of his caring family. Yes, it is helpful that the daughter facilitates the patient’s healthcare and offers her insights about his status. But the daughter receives scant acknowledgement for those contributions from the physician. Worse, the physician never asks how the daughter is managing with her caregiving duties. She happens to be seated in the exam room when the physician enters so she becomes part of the visit almost by default. But who she is and how she feels aren’t within his scope of inquiry, let alone intervention.
It isn’t supposed to be this way. In 2010, the Journal of General Internal Medicine published a position paper of the American College of Physicians (ACP), the professional organization of the specialty of Internal Medicine, entitled “Family Caregivers, Patients and Physicians: Ethical Guidance to Optimize Relationships” (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2839338/). It urged physicians to “be alert for signs of distress in the family caregivers and suggest appropriate referrals.” It also recommended that physicians “should monitor family caregivers for distress due to issues of loss during the period leading up to and after the death of the patient.” The ACP wrote this paper because of the growing societal awareness that, in an aging society, more of us will have to care for loved ones at some point and that doing so is highly stressful with the potential for negative psychological and medical sequelae. But in nearly a decade since the ACP’s guidelines were published, they have scarcely had an impact on standard medical practice.
Medicine has some distance yet to go to consistently see people in situ and family relationships
To the contrary, as evidenced by the results of a recent UsAgainstAlzheimer’s A-List survey of over 600 current and former family caregivers of their perceptions of physicians. (I assisted Mark Yaffe, MD of McGill University and the UsAgainstAlzheimer’s staff with writing the survey questions.) In an UsAgainstAlzheimer’s blog post about the findings (https://www.usagainstalzheimers.org/blog/physicians-caregivers-needed-partnership-fight-against-alzheimers), Dr. Yaffe and I wrote that “61% of the survey respondents believed their family members’ doctors were aware of their status as caregivers. Respondents also reported that, through the course of an appointment, doctors were generally respectful, made good eye contact, gave clear information, and most often asked them their name, relationship to the patient, and whether they could add any relevant information to the discussion not given by the patient. But caregivers also reported that only 10% of doctors asked how respondents themselves were coping. Nor did the nearly two-thirds of doctors who knew the respondents were caregivers provide advice about how they might manage their situations better.”
Why were the physicians’ performances—at least in the caregivers’ perceptions–at such variance with the ACP guidelines? Did they have a lack of awareness of the family caregivers’ needs? Possibly. Did they lack confidence with engaging and intervening with family caregivers: Most likely. Did they over-focus on patients free from their social contexts? I’d bet money. In the last 20 years, medicine has made strides in seeing people as people and not just collections of diseased organs. But it has some distance yet to go to consistently see people in situ and family relationships.
How do we remedy this? Forty years after Dr. George Engel of the University of Rochester proposed the biopsychosocial model, we need more concerted educational efforts than ever to infuse all of healthcare with an appreciation for social and psychological factors. Family is frequently at the heart of both. As patients’ representatives and de facto extensions of the healthcare system into homes, family caregivers should not be treated as mere afterthoughts to patient-centered care. They should be engaged, supported and empowered. Maybe pampered, too. We need them as partners in healthcare.