Around the long mahogany board room table, the 40 middle-age nurse and social work care managers of this large Medicare ACO regarded me with a mixture of inquisitive and impassive looks. I was supposed to deliver the good news on how strategies for supporting family caregivers are becoming more sophisticated. I started off by asking how many of them had been caregivers in their own families. Everyone raised their hands. One woman shared her story of growing up with a grandmother who’d had a stroke. Another revealed she had a father with dementia.
They talked about how trying these personal experiences were. I then asked how many of them used formal, structured means of engaging and assessing the family members of the geriatric patients with whom they worked professionally. Not a hand went up.
Medical family therapists and physicians and nurses with family systems training–the heart and soul of CFHA–are not the frontline ground troops of family-engaged healthcare. Care managers are–or should be. Mostly seasoned female nurses with big overflowing hearts and steel-trap minds for details, they sit in back offices in primary care clinics, in healthcare insurer cube farms, and at hospital unit desks, making dozens of phone calls daily to smooth out care transitions, coordinate communication among disparate providers, and better address patients’ social determinants of health. They have learned ways of supporting patients who have housing, transportation and food insecurity challenges. But even though they work with the family members of those patients every day, they don’t know—and often don’t know they don’t know—about the latest methods for engaging families as partners in healthcare and social service delivery.
So, what are those methods? They loosely fit into three buckets:
Intentionally engage family caregivers: The care managers at the ACO training were quick to point out that they interacted with patients’ family members all the time. But they admitted that these relationships developed somewhat haphazardly. If the family members picked up the phone call for the patient when the nurse called or were present in the home when the nurse stopped by, then some conversation and coordination ensued. In many cases, though, this never happened and family members of great importance to a patient’s treatment course were never meaningfully engaged.
This wasn’t due to malicious disregard. Everyone pays lip service to the importance of family. But most of the care managers around the table never received training about intentionally engaging patients’ family members and still practice with the patient solely in their sights. In my opinion, this has only been reinforced in recent years by the increasing emphasis on “patient- or person-centered care.” “Family-centered care” is looked at askance as almost an antithetical heresy. That’s one reason I now push the term “person-centered, family-engaged care” to indicate that including families in our scope of practice won’t violate our duty to individual patients.
An intentional approach to engaging family caregivers requires reaching out to patients’ family members as a normative protocol at the outset of patients’ treatments. It is about acknowledging and valuing their potential contributions to patients’ well-being through the hands-on help and emotional support they give. For example, at Dignity Health System in Santa Barbara County, California, caregiver navigators show up at patients’ homes to meet family members—not patients—to establish relationships with them and give them educational materials and caregiver support gift baskets. Those navigators may then arrange for community health workers to connect with the family members—not the patients–to better support their needs. For more about these kinds of family-facing strategies, see this May 2018 Washington Post article.
Assess family members formally: The care managers at the training also contended that they used their clinical instincts to gain a sense of how their patients’ families functioned and whether they could be relied upon to assist with patients’ care. But as far back as 2006, the California-based caregiver advocacy organization, Family Caregiver Alliance, devised a National Consensus Development Conference, spearheaded by trail-blazer Lynn Friss Feinberg, to create agreed-upon formal means of assessing family caregivers. That document calls for evaluating family caregivers’ backgrounds, beliefs, values, skills, resources, etc.
In the years since then, healthcare has been exceedingly slow, however, to consider these standards, let along adopt them. It was only in 2019, in the fourth edition of its “Clinical Practice Guidelines for Quality Palliative Care,” that the National Coalition for Hospice and Palliative Care included recommendations for assessing and treating family members (guidelines 4.2.1-4.2.1 and 4.3 on pages 27-28). Few, if any, other national standards for family caregiver assessment exist in any other healthcare sector.
In the training that I’ve done with thousands of mental and physical healthcare professionals over the last decade, I’ve expanded upon the Family Caregiver Alliance’s framework to a 7-point family caregiver assessment that includes family constellation, history, willingness to provide care, ability to provide care, willingness to receive help, meanings derived from caregiving, and stress-level. For more information,see this recent CFHA webinar.
Provide family caregiver support that’s individually tailored and actually helpful: The care managers readily understood that family caregiving is stressful. They spoke of listening supportively to family caregivers’ concerns and referring them to social workers and/or caregiver support groups. These elements of their geriatric practices made me entirely grateful. I’ve learned through my clinical career, though, that not all help is helpful. Unless we really get to know people in the granularity of their life circumstances and idiosyncratic attitudes, we can’t fashion the right support at the right time–thus the need for diving deeply through family caregiver assessment. One-size-fits-all caregiver support groups rarely do. I’ve also learned that family caregivers are proud and are often loath to accept help. That’s what makes the relationship-building we should do with patients’ family members from the outset more essential. It is only when we take the time to establish ourselves as trustworthy guides that we have half a chance of convincing them to utilize the support services we can offer.
After the training, the care managers’ director told me she found my presentation “eye-opening.” Her comment was flattering but also alarming. Little of what I presented should have been brand new to them—and yet the idea of approaching patients’ family members with intention and formal clinical approaches came as a revelation. Person-centered, family-engaged healthcare won’t make any advances unless the ground troops are on board. Those of us in collaborative family healthcare have a lot more to do to supply them with the orientation, tools, inspiration and will.