To improve interactions between patients and providers, UHF co-developed a prototype of a new digital resource, How’s My Health Dashboard. In the project’s first phase, the team worked with 10 patients living with a chronic condition as well as their providers. The interviews focused primarily on the challenges of the patient-clinician relationship in the co-management of a patient’s health. Yet United Hospital Fund senior fellow Carol Levine saw another important issue that was not explored in the project—the relationship between the patient, provider, and family caregiver. In the following commentary, Carol discusses how a tool such as How’s My Health Dashboard can support conversations between patients and their caregivers and, in turn, enhance their interactions with providers about issues of health and well-being.
—Anne-Marie J. Audet, MD, senior medical officer, United Hospital Fund
“Mom,” my daughter Jenny said firmly, “You don’t have to do this alone.”
Judy and Charlie, my other children, said much the same thing when I told them my doctor recommended a series of radiation treatments. The plan would require five consecutive treatment days, a sixth preparation day, and daily travel back and forth.
My reluctance to accept their help stemmed from my experience as a caregiver for my late husband who was quadriplegic and brain damaged. I had managed his total care at home for 17 years; a short course of radiation would be easy by comparison. But now I was older, no longer a caregiver, and needed a caregiver—even if only temporarily. I agreed to accept their offer.
My daughter Judy, who lives in California, came to New York and stayed for a week. By the end of the first treatment day, I realized I had underestimated the toll that treatment and travel would take. The staff was attuned to patient and family needs. Even in pandemic times, “companions” or “family” were allowed to wait on the treatment floor, not just in the main lobby.
Judy was the first person I saw after leaving the treatment area. What a relief! On the final day, I met with the doctor to discuss follow-up. His first question was: “Do you have someone with you today and would you like that person to sit in on our conversation?” “Yes and Yes,” I said.
I took the lead, but Judy asked clarifying questions. My children were right; I needed help.
Shortly after this experience, I received the new United Hospital Fund report, Designing a Digital Platform to Monitor Health Status and Foster Trust Between Patients and Clinicians, by a UHF team led by Anne-Marie Audet, MD. The report and the prototype dashboard for patients are important steps toward better collaboration between patients and clinicians. But I did not find any mention of the role of a family member involved in the patient’s care and a potential partner in the Dashboard experience.
With my enhanced appreciation of the role caregivers can play in building trust and providing emotional and practical support, I looked for points in the report where caregivers’ special knowledge might be helpful. Here are three examples.
The Hidden Side of Family Caregiving
Research on family caregiving tends to lump activities into categories of helping with Activities of Daily Living (ADLs) and Instrumental Activities of Daily Living (IADLs), and more recently, medical-nursing tasks. (I have participated in many of these studies.) All of these are important, of course, but they don’t necessarily capture the daily routine of caregiving: the constant observation, the small adjustments to make the person more comfortable and amenable to taking medication, and the side effects that may interfere with the regimen or doing physical therapy. Some or all of these small but meaningful adjustments may not be noted in the patient’s Dashboard.
The idea that family caregivers should be part of the health care team is becoming more widely accepted. A recent national survey of health system executives and clinicians found that while 83 percent felt that unpaid caregivers should always be part of the care team, only 23 percent said that their system actually includes them.
There are certainly barriers, including a lack of time and resources, but the benefits can make the effort worthwhile. As the Dashboard project continues, including family caregivers would be a major step forward.
Making the Most of an Office Visit
An office visit can be more productive if the caregiver and patient are prepared. As part of the UHF Families and Health Care Project, which I directed until my retirement in 2019, we created the Next Step in Care website with guides for caregivers and professionals. One guide is devoted to doctor visits, which discusses preparing for the visit, what to do during the visit, and how to follow up afterwards. It recognizes that the patient and caregiver may have different ideas about what to say and ask and offers advice on how to resolve these questions.
Caregivers might review the patient Dashboard to comment positively on the achievements and to point out areas that the patient has concerns about but did not include. Doing this ahead of the office visit can help ensure that the major issues are discussed.
Facilitating Patient-Caregiver Conversations about What Matters Most
Let me focus on one important issue to illustrate how the Dashboard could help support meaningful and sometimes difficult conversations between a person and their family caregiver. The interview guide for patients in the Dashboard study asks, in the broad category of “What Matters Most to Me,” about relationships—family, friends, religion/spirituality, community. But in the sections about health and well-being and decision-making, the interaction includes only the doctor and the patient. And in terms of patients’ values, the guide notes: “Independence is also key.”
But what does independence really mean? Many people might say it means “never going to a nursing home.” But that ignores many more immediate issues. Does “independence” mean keeping all medical information private—even from the caregiver? Rejecting all offers of help? Or, as “Dave,” the hypothetical example, explains, “Not having to depend on others.”
Given my own recent experience, I believe that an honest conversation, open to revision, is needed to understand what patients understand by “independence.” Finding out what help is acceptable and seeking help that may be available for specific tasks can be the basis of enhancing what matters most—relationships, pleasurable activities, religion/spirituality, productivity, learning.
What should guide each of us, as patient, caregiver, or clinician, was expressed eloquently by Stephen Sondheim in the lyrics to “No One Is Alone” from the musical Into the Woods:
Mother cannot guide you
Now you're on your own
Only me beside you
Still, you're not alone
No one is alone. Truly
No one is alone….
Carol Levine, MA, is a Senior Fellow at the United Hospital Fund and a writer, researcher, and consultant on family caregiving. She was not involved in the UHF Dashboard study. Judy Levine contributed to this commentary.