While sitting in on my parents’ medical visits, some of their doctors looked through me like I was wearing Harry Potter’s cloak of invisibility once they learned I had specialized knowledge. They neither talked to me nor gave me the opportunity to provide input or ask questions as if concerned, perhaps, I would second-guess their recommendations or oppose their treatment plans. Consciously or subconsciously, they marginalized me. In contrast, other providers put me in the bright hot spotlight, treating me as a quasi-colleague during these visits by directing nearly all questions and comments to me. They consequently made my mother and stepfather feel marginalized.

Something analogous happened with my family members. Most valued my experience and respected my opinions about what kind of care and support services would be best. Some went further, however, and took this as an excuse to defer all decisions and caregiving responsibilities to me, saying, in essence, “This is your field. You handle everything for mom and stepdad. We’ll cheer you on from the sidelines.” In contrast, other family members disdained and disregarded my knowledge. When I voiced my perspectives about the best care based on my clinical experience, they ignored it, suggesting we hire a professional, such as a geriatric care manager, to guide the family forward.

I vented my frustrations about being treated so ambivalently as a clinician-caregiver to two close colleagues, family physician Katherine Mahon, MD and nurse practitioner Kimberly McGuinness, CRNP. They had had similar experiences while caring for their parents with neurodegenerative diseases. None of us could find anything in the clinical literature or popular press that addressed how to deal with this. So we created our own framework for thinking about it. The result has been a presentation, “When Clinicians Become Caregivers,” which we have given about a dozen times to Grand Rounds and other professional audiences around the country.

We started off with some basic assumptions: No healthcare professional who is also a family member can have an objective clinical perspective; too many emotions and expectations get in the way. As is true for all family caregivers, guilt about not doing enough or not doing the right thing is ubiquitous during and after caregiving.

But we focused primarily on the role uncertainty of a clinician-caregiver. In regards to the patient and other family members, we asked: Are we supposed to be an authoritative guide, as-needed expert, or hands-off supporter? In regards to the physicians and other treating professionals, we similarly asked: Are we supposed to be part of the treatment team, an as-needed informed observer, or a hands-off supporter? We wondered: How do we figure these questions out for each unique caregiving situation?

We then conceptualized what an ideal collaboration among all parties might look like. In the best-case scenario, we concluded, mutual respect and appreciation should abound. The clinician-caregiver should respect the autonomy and opinions of the patient and other family members; they in turn should respect the clinician-caregiver’s input. The clinician-caregiver should respect the expertise and perspectives of the treatment team members; the team should welcome the informed observation of the clinician-caregiver.

Finally, we came up with ideas for how to achieve this ideal state: Talking explicitly with family members and treating professionals about which helpful role or roles a clinician-caregiver should play is essential. Proceeding diplomatically, not aggressively, to advocate for the patient’s care is crucial. Self-awareness is key. If a clinician-caregiver stops and reflects on their interactions with family members and the treatment team members, they are more likely to exercise prudence and make the best use of their specialized knowledge without alienating anyone.

The conversations we’ve had with participants during our presentations have been amazing. Many have had similar experiences and frustrations trying to support their own ill, disabled, or aging family members. Many, too, reached the same conclusions we had about intentionally thinking through the roles they should play and then communicating early and often with family members and professionals to make sure their expectations were aligned. As presenters, we have felt validated and challenged. It has been a personally and professionally gratifying experience for us.

Have you had experience as a clinician-caregiver? If so, how do you think about these issues? What more can you add to our ideas above?

Barry J. Jacobs, Psy.D. was a behavioral health faculty member for the Crozer Health Family Medicine Residency program (now run by Penn Medicine) from 1994 to 2018. He is the author or coauthor with psychologist Julia L. Mayer, Psy.D. of three self-help books for family caregivers, including the just-published book, The AARP Caregiver Answer Book (Guilford). For more on this subject, please see Katherine Mahon’s 2025 essay, “Dad, What Do You Want My Role Here to Be?” in the Family Medicine journal.

Photo by Razi Pouri on Unsplash