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During the years I was my mother’s family caregiver, I had widely different interactions with her physicians. Some embraced me as a partner in her care, talking directly to me during my mother’s medical visits about her symptoms and medications—and largely ignoring her. Afterwards, during the car ride home, my mother would always be furious with me (not her doctor) about “interfering” in her care.
Some physicians talked directly to my mother about her symptoms and medications—and largely ignored me. If I tried to share my observations of her progress, then they conveyed disinterest and quickly redirected the conversation back to my mother. I left those medical offices fuming.
In either scenario—whether I was treated like a driver of her care or a mere driver to the office—no physician ever asked me how I was coping with caregiving.
In the nearly 30 years I have been a medical educator, healthcare consultant, and psychologist specializing in family caregiving, I have seen a gradual shifting of physician attitudes toward patients’ family members. Like Americans as whole, more physicians have personal experience with caregiving.
When I start my medical Grand Rounds on family caregiving nowadays with the question “Who is or has been a family caregiver?”, half to two-thirds of the doctors in the audience raise their hands. Firsthand knowledge gives them better understanding of the stress of caregiving. They are consequently more sympathetic to the family caregivers of the patients they see. But, with today’s steady drumbeat of person-centered care on their minds, they may still feel constrained in including family caregivers in patient care or devoting time and resources to their support.
You can see the awkwardness of physicians’ position in the findings of several recent research studies that explore both doctors’ perceptions of family caregivers and vice versa.
In the nearly 30 years I have been a medical educator, healthcare consultant, and psychologist specializing in family caregiving, I have seen a gradual shifting of physician attitudes toward patients’ family members.
In surveys by AARP (2019), UsAgainstAlzheimer’s (2019, that I helped design), and Cornell University researcher Catherine Riffin (unpublished), most physicians expressed appreciation for the roles that family caregivers play in the care of patients with chronic illnesses. AARP found that 39% of physicians thought it was too time-consuming to interact with family caregivers but two-thirds said they still discuss the emotional aspects of caregiving with caregivers. Riffin found that 87% indicated they informally asked dementia caregivers about their needs but that only 10% use a standardized procedure for assessing caregivers.
My interpretation: Physicians believe they appreciate and sympathize with family caregivers but contend they don’t have enough time or time-efficient formal means to better understand and address their needs.
Perhaps not surprisingly, the results of studies of caregivers’ perceptions of physicians take a different view. The 2015 Caregiving in the U.S. Report by AARP and the National Alliance for Caregiving said that only 32% of the caregivers reported being asked by a member of the healthcare team what they needed to be a better family caregiver and only 16% were ever asked what they needed to better take care of themselves. The USAgainstAlzheimer’s study reported that only 10% of dementia caregivers were ever asked how they were coping by a primary care provider.
My interpretation: Family caregivers haven’t seen the appreciation or support from physicians that they would like.
How do we reconcile these divergent results? Physicians may be feeling greater sympathy but, for whatever reason, family caregivers are still not feeling the love. Physicians’ efforts to engage family caregivers as partners in care are still inconsistent. To remedy both concerns, physicians need simple, formal and time-efficient protocols for working collaboratively with family caregivers that won’t disrupt workflows.
In my medical resident lectures and Grand Rounds, I teach physicians to engage, support and empower family caregivers.
Engagement entails speaking with family members at the first medical appointment for chronically ill patients and establishing mutual expectations that they will work together on the patients’ behalf. It also means formally screening family caregivers with one- or two-question screeners to identify those who need more intensive assessment, direction and support.
To empower family caregivers, physicians need to spell out for them what roles they can play
To support family caregivers, physicians need to have a list of community resources at the ready. But they also need to be reliably available and caring toward family caregivers—providing what the Camden Coalition of Healthcare Providers refers to as “an authentic healing relationship”–to bolster their efforts over months and years.
To empower family caregivers, physicians need to spell out for them what roles they can play—e.g., observer and recorder of the patients’ symptoms and treatment effects—to be most helpful to the patient and healthcare team.
Through applying these precepts for engagement, support and empowerment, physicians will feel more confident in working with family caregivers in realistic and pragmatic ways. Family caregivers will feel better appreciated and supported. Person- and family-centered healthcare will then have a greater chance of becoming this country’s healing standard.
AARP Research Survey (2019). Primary care providers’ experiences with family caregivers: https://www.aarp.org/content/dam/aarp/research/surveys_statistics/ltc/2019/primary-care-provider-on-family-caregiver-role.doi.10.26419-2Fres.00273.001.pdf
UsAgainstAlzheimer’s (2019): https://www.usagainstalzheimers.org/blog/physicians-caregivers-needed-partnership-fight-against-alzheimers
Riffin, C. (2019). Personal communication about her ongoing research.
NAC/AARP, Caregiving in the U.S. (2015): https://www.caregiving.org/wp-content/uploads/2015/05/2015_CaregivingintheUS_Final-Report-June-4_WEB.pdf
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