I have seen that glazed look, that twitch of impatience. In my 23 years as a psychologist faculty member of a family medicine residency program, I’ve noted that young family physicians in training are polite but disinterested when I recommend they reach out to their chronically ill patients’ family members to enlist them as collaborating partners in care. “I haven’t the time,” the slight shuffle of their feet seems to communicate. Or the coolness of their manner says, “Working with difficult family caregivers is not my job or desire.”
It’s only when I prompt them to recall their own family experiences that I ever get anywhere. “Has anyone here dealt personally with family caregiving?” I often ask at the start of my annual lecture on caregiving. There is a pause before the stories trickle out: “My parents are having trouble with my grandmother. She has dementia,” someone will invariably say. Or, “My aunt had a stroke and then lived with us while I was growing up.” I always ask the family medicine residents then how these brushes with family illness affected them. Though the room goes silent at that point, you can sense the sadness in the air. It’s only then, I believe, that they start to grasp what the relatives of their patients with dementia, stroke, etc. might be feeling and are more willing to see them as fellow travelers.
It seems axiomatic to me that the relationships among physicians and family caregivers are crucial to the health care of today and tomorrow. Our population is rapidly aging. Older people have more chronic and debilitating illnesses for which they need care. The daily grind of feeding, comforting and pill-doling is mostly up to their family members.
We health care providers should know that we won’t be as successful with managing illness and keeping patients out of the hospital without the smarts, devotion and perseverance of family caregivers. They can be our eyes and ears at home, reporting on patients’ symptoms and the effects of prescribed treatments. They can teach us about patients’ backgrounds, personalities and preferences. They can remind their loved ones what we said and did during our hurried office visits with them.
It’s little wonder then that the AARP Public Policy Institute and other national caregiver advocacy groups have long called for closer working partnerships between caregivers and pros. But this has been more rose-colored dream than earthy reality in many medical practices.
That’s borne out by a December 2017 article in the academic journal Families, Systems & Health entitled “Family Members’ Experiences Supporting Adults With Chronic Illness: A National Survey” by a team of Ann Arbor, Michigan-based public health researchers and physicians. From a sample of 1722 adults selected to represent the U.S. population, 703 responded to an internet survey about providing regular help to a functionally independent family member or friend with a significant chronic illness. Among the survey’s findings:
--30-40% of respondents reported challenges to providing support to their loved one, including “lack of knowledge [and] confusion about information provided by health care providers”;
--30-40% said that health care providers didn’t share information with them or involve them in decision-making;
--20% said the health care providers “did not listen to their input.”
Of course, this last statistic can be stood on its head to state that 80% did listen to family members’ perspectives. But why would 1 in 5 of physicians and other health care providers still reject what knowledge caregivers glean from their intimate interactions with patients? To me, it simply makes no clinical sense. Why does it still occur?
In their classic 1999 Annals of Internal Medicine article, “The Trouble with Families,” Carol Levine and Connie Zuckerman wrote: “The persistent tendency to equate families with trouble is evident in both the literature and practice of medicine.” Nearly 20 years later, in my opinion, more doctors have at least some awareness that family is one of the most important social determinants of health. But the culture of health care is still ambivalent at best about families. Too many clinicians still fear that dealing with patients’ relatives takes up too much time and somehow sullies the doctor-patient relationship. Too many still feel out of their depth trying to soothe patients’ upset spouses or grapple with demanding sons and daughters.
To convince health care professionals to fully embrace caregivers as partners in care, researchers will have to more definitively prove that it enhances clinical outcomes. Educators will have to more effectively teach the skills of doctor-family communication and negotiation. And physicians themselves will have to more clearly remember their own family members’ need to be treated as respected and valued partners--not bothersome intruders and nuisances--during their loved ones’ illness crises.
Barry J. Jacobs, Psy.D. is a clinical psychologist, family therapist and the Director of Behavioral Sciences for the Crozer-Keystone Family Medicine Residency Program in Springfield, PA. He is the co-author (with his wife, Julia L. Mayer, Psy.D.) of AARP Meditations for Caregivers—Practical, Emotional and Spiritual Support for You and Your Family (Da Capo):
Follow me on Twitter: @drbarryjjacobs