Carepartners, not caregivers

By Lolita Nidadavolu, MD, PhD, John Hopkins Medicine

I open the door and see a man sitting in one of the chairs alongside the windows of the examination room, looking absentmindedly at the oversized photograph on the wall across from him. He snaps to attention suddenly as I walk in, sitting upright, stiffly in the chair. After we introduce ourselves, I ask him why he is here at the clinic. He sighs and says that his wife made today’s appointment for him. She has been worried about his memory, but he knows that everything is fine and he has 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 to the patient, but also to provide additional history details and their perspective on how the patient is functioning. Having someone accompanying 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 situation described above. Generally, it is 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 clinic 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, and 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To me, the term “caregiver” conjures an out-of-date image of an Old Master’s oil painting, full of dark hues, with a thin, frail older adult lying in bed and dependent on someone else, to help with tasks like bathing, dressing, and feeding. However, the term “caregiver” inherently implies a unidirectional relationship that de-centers the patient and disregards the autonomy and preferences of the patient. For clinicians to actively ask patients about who their “carepartner” emphasizes that successfully managing their health long term requires active partnership that is centered around shared decision making with loved ones.

Some ways that I nudge patients towards thinking about building a support network and identifying a carepartner is to ask: “Who can you count on to help you when making decisions about your medical care?” Having this discussion about identifying carepartners can lay the groundwork for deeper conversations during which you can learn more about not only 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 is crucial to be non-judgmental and to not have 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 to help advocate for their preferences, enhance their understanding of their health conditions, and navigate new treatment plans. .

For the patient I saw that day in clinic, I advised we call his wife during our visit to hear her concerns as well as his, particularly since she was the one who helped set up the appointment. He agreed and called his wife, who was unable to come to the visit due to not being able to 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 which 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.