In many ways, families are the backbone of patient care. Children’s hospitals have known this for a long time. They often give out laptops, do laundry, and provide comfortable overnight accommodations for parents of children in the hospital. They know that when children are sick, parents are the ones who comfort them, give them medicine, feed them, and help them adhere to treatment plans.
In reality, the role and importance of family members as caregivers is similar with adult patients.
Family members are essential to patient care, especially for sicker and older patients. When it comes to chronic illness, family is often heavily involved. Between 30% and 50% of patients bring family with them to a doctor’s visit. As the primary caregivers beyond the healthcare facility, family members not only help patients carry out care plans, but can also help them understand and remember the instructions. Often times with patients that speak multiple languages, family members can translate, literally and figuratively, care instructions for them and add anecdotal understanding in their own language and context.
And, just like parents of sick children, family members of adult patients remind them to take their medications, provide emotional support, and ultimately help keep them healthy.
While this information is not news to most providers, the model of involving families in care has been largely dependent on family members being proactive. Yet, there is opportunity for providers to encourage patients to bring their families into care, and the Centers for Medicare & Medicaid Services (CMS) agrees. In December of 2016, CMS released the Person and Family Engagement Strategy with the first goal of the program being to “actively encourage person and family engagement along the continuum of care …,” making family engagement not only an ideal, but also a quality measure.
Johns Hopkins Hospital embodies this CMS principle through its Family Involvement Menu. With one simple document, Hopkins not only allows families to be involved in care, it proactively invites them to do so. Given out to every family of a patient in the ICU, the Family Involvement Menu provides families with different options for how they can be involved in care, including brushing their loved ones’ teeth, feeding, distracting and filling time, and assisting with range of motion.
As a result of the menu, families of patients in Hopkins ICU reported being better able to cope with their loved ones’ condition. Nurses reported having more free time to focus on more complex aspects of care, and providers confirmed it as a tangible strategy for involving families in care. The project worked so well in its rollout that Hopkins took the menu online in the form of a tablet given to families, equipped with video tutorials and other resources to help facilitate their involvement.
The Hopkins Family Involvement Menu shows the benefits for everyone involved in care when families step in to help. And as providers think about ways to improve care coordination, it’s important to keep families in the loop. When providers not only make it easy for families to be involved in patient care, but also nudge them to do so, we can expect to see more engagement in care from loved ones, as well as better outcomes.