Recognizing the Caregiver in the Room
Behind nearly every patient is a family caregiver.
Today, an estimated 43.5 million Americans provide unpaid care to an adult or child1—from bill paying and grocery shopping, to managing and administering complex medication.
Because they often spend 24-7 with the person in their care, they're what MaryAnne Sterling, EVP of Caregiver Experience at tech-startup Livpact, calls "a walking EHR," or "storehouses of healthcare information."
Sterling—who with her husband has cared for three out of four parents with dementia—started her family caregiving experience at the tender age of 7, when her mother's breast cancer diagnosis required a radical mastectomy. "At that point, I became [her] lifelong health partner," she says.
What They Know Can Help You
Are you leveraging these healthcare partners, many of whom often carry healthcare decision-making capacity, in your patient interactions?
"Engaging family caregivers is absolutely crucial," says Nicole Rochester, MD, health navigation expert, professional patient advocate, and founder/CEO of Your GPS Doc, LLC. Rochester started her company after an eye-opening experience with her father, who had dementia, diabetes, hypertension, end-stage kidney disease, depression, and heart disease.
As a medical professional, she was astonished to see how often family caregivers were overlooked, or rarely engaged, by providers. "I couldn't believe how we could be physically present but not even acknowledged," she says.
Caregivers such as Rochester may have history on the patient you won't always see on the chart. They can correct inaccuracies in electronic and paper records, offer insights on medication interactions, and piece together disjointed reports from various hospital stays.
"[They] have an intimate knowledge of the individual," Rochester says. "They add so much value and make providers' jobs easier by bringing vital information to light."
Why You Must Engage Family Caregivers
A front-end investment of just a few extra minutes engaging with a family caregiver is well worth it. The long-term benefits include avoiding unnecessary readmissions and ensuring better outcomes following discharge.
It doesn't matter whether patients are healthy or chronically ill before hospitalization: They'll need some form of help at home when released. And who will be responsible for that care coordination? Who will likely be carrying out the discharge instructions? The family caregiver.
That's why a patient's caregiver is a provider's most valuable asset, says Livpact's Sterling. "Let them know they're important partners on the care team and listen to their concerns," she adds.
Three Tips for Effective, Efficient Caregiver Engagement
As an MD, Rochester knows all about the time constraints providers face. To that end, she offers these tips for maximizing those few extra minutes with a caregiver:
1. Provide a summary of the patient's status and ask for clarification from the caregiver. Start by saying, "This is my understanding of what's going on with Mom. Is that correct? Do you have anything to add?"
2. Check in during a hospital stay. While x-rays and labs may show considerable progress, a family caregiver can alert you about a patient's mental condition or other abnormal behaviors that may not be apparent. Get a sense from the family caregiver about how close the patient is to baseline (which will help you determine whether the patient is truly ready to go home).
3. Ensure sufficient discharge resources are in place. Is a caregiver with an aversion to blood and pus being tasked with wound care? Can the caregiver handle what's required at home? Family caregivers need the right tools and resources to ensure a good outcome after a patient leaves the healthcare setting, says Sterling.
Then there's the matter of burnout. The American Medical Association just released a guide for healthcare providers to assess when caregivers are feeling overburdened. Directing them to vital community supports can be essential in ensuring the best results for your patient.
1 Family Caregiver Alliance National Center on Caregiving. Caregiver Statistics: Demographics. 2016: San Francisco.