According to a study by AARP, 97% of healthcare providers believe caregivers are important for patient care, 86% are strongly interested in collaborating with family caregivers, and 75% are extremely or very confident that they are able to work with family caregivers successfully. The vast majority of providers surveyed see information-sharing as key to that collaboration: 88% say communicating info with families results in getter patient outcomes, and 73% say doing so helps caregivers feel happy and confident in their role.
But while providers may believe these things, those attitudes don’t always translate into effective or consistent communication with patients and their caregivers. Caregivers may not understand the information being presented, misinterpret it, or have trouble remembering it. This disconnect is a large part of why AARP is championing state laws around the country aimed at institutionalizing engagement and education of caregivers at the time of patients’ discharge.
How does this disconnect arise, and what can we do to fix it?
Charlotte Bayala of Minneapolis, who has been the caretaker for her husband since his 2013 diagnosis with papillary thyroid cancer, says that even when doctors are communicating well — which isn’t a given — those in the receiving position aren’t always understanding or absorbing it sufficiently.
“Often when docs are explaining something, the patient and the caregiver aren’t just trying to analyze what’s being said — they’re doing that under duress, with stress and fear, and trying to remember, which means it’s hard to listen,” she says. “If there was an easier way for doctors and specialists to communicate things, it would be really good for the people that they treat. It would make a level playing field between patient and doctor.”
That sense of a lopsided playing field might explain why family caregivers are often hesitant to seek out clarification or assistance. Another AARP study found that less than half — only 46% — of caregivers to ailing family members sought out information or assistance to help in their caregiving activities.
Bayala, who created the Love Your Caregiving Life Podcast to support caregivers in their often-difficult journey, says she’s had doctors try to communicate about her husband’s condition by overexplaining, belaboring the conclusion, or simply starting to draw numbers and graphs on a piece of paper.
“I’m like ‘what does that mean?’” she says. “We’re not oncologists. We shouldn’t have to know that language to understand the possibility of trials, treatments, and options.”
One major reason for the disconnect between providers and caregivers is the constant tension between standardizing and tailoring, says Dr. Ranak Trivedi, assistant professor of psychiatry and behavioral sciences at Stanford.
“I think the clinical team and hospital system have a responsibility to create standardized procedures and still leave room to assess what caregivers’ and patients’ own needs are,” she says. “We need to figure out better ways to convey the information as opposed to just giving brochures, a lot of which is boilerplate.”
Tony Kuriakose, a registered nurse who has been lead caregiver for four years to an Amyotrophic Lateral Sclerosis (ALS) patient in Sugar Land, Texas, agrees that customization is essential, in part because patients and caregivers are apt to disregard general information that doesn’t feel urgently needed at the moment it’s received.
“Whether you’re in the hospital or a skilled nursing facility or long-term care, information is usually generalized, not specific to the patient, so it’s easily overlooked or discarded until you run into a problem,” he says. “Then you think, ‘Oh, what did they tell us? Were we supposed to do this or that?’”
There’s no single, simple solution to the problem of insufficient or inaccurate information-transfer to caregivers. But advances in this area are likely to involve tech tools that can organize and curate information, enable effective communication, and record details about the caregiver, including their level of knowledge and caregiving confidence.
Electronic health records (EHR), the main digital repository of patient information that providers use to track and orchestrate care, aren’t capable of these functions.
“Sophistication needs to be built in, but our electronic health records don’t document caregivers also,” says Trivedi. “It’s not really meant to coordinate care. We don’t document caregiving topics in there in a sophisticated way.”
Bayala, for her part, would like to see not only a way for doctors to better communicate with caregivers but also the option to sign into a self-service database of information specific to the patient’s diagnosis. This type of tool could help caregivers learn and be prepared for upcoming appointments by accessing accurate, curated information appropriate to each situation.
Kuriakose says being willing to learn is one of the most important attributes of good caregivers. Doing his own research about ALS at the beginning of his job “allowed me to feel a little bit closer to the patient, to see their struggles,” he says. “The knowledge base helps me understand the disease and understand my patient's physical and emotional turmoil.”
But providers can’t depend on caregivers to be self-directed researchers; they must guide them toward the information they need. It should be a priority for them to seek out tools that can help patients and caregivers understand and even visualize the effects of the diagnosis and the course of treatment.
Always Health is one such tool, which allows clinicians to record instructions and create images and voiceover animations while in consultation with a patient. Patients take these recordings and images home via email and are able to refer to them later and share them with their care team, eliminating the uncertainty and miscommunication that can occur after a patient’s visit.