In a recent issue of JAMA Internal Medicine, Drs. Sterling and Shaw from Cornell Medical Center make a case for physicians to pay greater attention to caregivers, both informal (unpaid, typically family members) and professional (paid). They argue that physicians will do a better job caring for patients suffering from frailty, dementia, or disabilities if they include them in their visits. The authors highlight how helpful caregivers can be, both as a source of information and as an instrument for implementing a treatment plan. They are right: it is high time physicians acknowledged the importance of caregivers and expanded the sacred doctor/patient relationship to include them. To that end, the authors exhort physicians to list the names and contact information of caregivers in the medical record and to ask their patients for permission to incorporate them in health-related discussions. But they fail to grasp the extent to which caregiver involvement can transform their patients’ medical care.
It's not just that caregivers, whether a daughter or a home health aide, might whisper into the patient’s ear that she should mention she’s been having episodes of incontinence—an example cited in the paper. It’s not only that caregivers might report memory lapses that the patient does not admit or remember she has been having. The availability of an on-site caregiver may enable the physician to embark on a course of therapy that would be unthinkable without a reliable partner, someone who can try various strategies and report back on their effectiveness. Much as a visiting nurse can serve as the eyes and ears of a physician at home and thus amplify the available treatment options, so too can caregivers potentially administer medication and inform the physician of the results in real time. Caregivers don’t just manage medications, as the authors imply, by purchasing drugs at the pharmacy and perhaps putting them in pill dispensers. They can learn to adjust dosages, decreasing warfarin in the presence of antibiotics or cutting the insulin dose in the face of gastroenteritis, perhaps allowing for home instead of hospital care. And caregivers don’t just provide inputs to physicians and follow orders. They can also be valued and indeed invaluable participants in discussions about what approach to care makes sense for a given patient. Does Mrs. Jones want all possible medical treatment, however invasive and however unlikely to work, in an effort to prolong life? Or does she want, above all, to stay in her apartment and be comfortable? Or is her main concern the ability to read and to play the piano so she will accept whatever medical interventions and supportive strategies are conducive to achieving these ends. Not only can caregivers help elicit the patient’s goals of care, but they can also evaluate whether the community supports (family, paid caregivers, financial resources) are adequate to implement a given plan.
So yes, it’s time to acknowledge the existence and importance of caregivers. But letting them in the examining room is just the first step. Caregivers need to be integrated into the medical team. They have a crucial role to play, just as do social workers and nurses. They are the key to better medical care, with “better” implying care that is in line with the patient’s preferences and values, not merely care that accords with the physician’s idea of optimal care. If those preferences translate into home rather than hospital as the site of care, they may even mean less expensive care.
For more on helping caregivers in their role as members of the medical team, see my forthcoming book: The Caregiver's Encyclopedia: A Compassionate Guide to Caring for Older Adults.