Carepartners, not caregivers

By Lolita Nidadavolu, MD, PhD, Johns Hopkins Medicine

I opened the door and saw a man sitting in one of the chairs alongside the windows of the exam room, looking absentmindedly at the oversized photograph on the wall across from him. He snapped to attention suddenly as I walked in, sitting stiffly upright in the chair. After we introduced ourselves, I asked him why he was at the clinic. He sighed and said his wife made the appointment for him. She was worried about his memory, but he was sure everything was fine and he’d just gotten a bit forgetful.

I primarily see patients in an outpatient memory clinic, and when scheduling the first visit we advise patients to bring a family member or friend, not only to give support, but also to provide additional history details and their perspective on how the patient is functioning. Having someone accompany a patient during a new visit is essential in our evaluation and assessment of memory impairment. However, we often see patients coming to new patient visits by themselves, like the above encounter. Generally, it’s not uncommon in many outpatient clinics for patients to attend the visit by themselves, providing their own updates on major health conditions and new symptoms since the last visit and updating the medical team on their latest medications. However, as outpatient providers, we should advocate for our patients by encouraging them to develop a system of support for managing chronic disease—one way to do this is for patients to identify a carepartner.

Carepartners, not caregivers

To me, the term “caregiver” conjures an out-of-date image of an Old Master’s oil painting, full of dark hues, with a thin, frail older adult lying in bed and dependent on someone else for tasks like bathing, dressing, and feeding. The word “caregiver” inherently implies a unidirectional relationship that de-centers the patient and disregards their autonomy and preferences. For clinicians to ask patients who their “carepartner” is emphasizes that successfully managing their health long term requires active partnership centered around shared decision making with loved ones.

Some ways that I nudge patients toward thinking about building a support network and identifying a carepartner is asking, “Who can you count on to help you when making decisions about your medical care?” Having this discussion can lay the groundwork for deeper conversations not only about what matters most to a patient, but who matters most to them.

Normalize conversations about identifying carepartners

Asking patients about their carepartners should be a routine part of clinical encounters. When doing so, it’s critical to be nonjudgmental and avoid any pre-conceived expectations about the outcome. I see spouses, adult children, friends, neighbors, and members of the same religious community who work alongside my patients help advocate for their preferences, enhance their understanding of health conditions, and navigate new treatment plans.

For the patient I saw that day in clinic, I advised we call his wife to hear her concerns as well, particularly since she was the one who set up the appointment. He agreed and called his wife, who was unable to come to the visit because she couldn’t take time off work. After talking with the patient and his carepartner, we came up with a plan for further testing and assessments that everyone agreed to, and that aligned with his goals of maintaining function and continuing to participate in social activities.

This piece expresses the views solely of the author. It does not necessarily represent the views of any organization, including Johns Hopkins Medicine.