As more people than ever find themselves caring for an elderly parent, they face complexity in family decision making that often dwarfs the medical challenges, which are big enough. Medicine is still figuring out how to provide patient-centered care, let alone family-centered care, which is what patients really need.
In pediatrics, family involvement has been our focus for decades. After all, a sick child’s parent or guardian is typically the health care decision maker. This might sound counterintuitive, but as the elderly population grows, try visiting your local pediatric hospital for ideas about family-centered care for adult patients of any age.
We don’t have all the answers, of course, and we recognize that consent and confidentiality concerns differ for adults and children. But we also know that you don’t need to reinvent the wheel to provide family-centered care. Here are some of our approaches at Nemours Children’s Health System.
A Bigger Circle on Rounds
Having a sick child is an immense stressor for a family, in part because caregivers experience a loss of control. It’s crucial to help family members regain a sense of control by helping them participate in the child’s care at a level they choose. Family-centered rounds, a standard practice in pediatric hospitals, is one way to do that. At Nemours’ two pediatric hospitals, we don’t ban families from listening as we discuss patients’ care plans — we pull them into the conversation, and not just for special meetings but every time we do rounds.
When family members participate in medical rounds, they are the clinicians’ partners, not mere witnesses to a process they cannot control. On rounds, families are encouraged to ask questions and to help craft the care plan. Similarly, adult patients and their families don’t want to witness the clinical team making a plan without their input — or worse, not witness the process at all.
Direct Advice from Patients and Families
Family advisory councils (FACs) are starting to influence the executive suite at pediatric hospitals. At Nemours’ two pediatric hospitals, FACs (with 20 to 25 caregivers each) work with clinical and administrative staff to offer advice on clinical and facility operations, medical care, patient and family satisfaction, and safety. At the larger Nemours hospital, Alfred I. DuPont Hospital for Children (AIDHC) in Delaware, an additional 150 caregivers offer feedback by email as members of a virtual FAC. FACs make as much sense in adult care as in pediatrics, and indeed many adult care providers already use them to varying degrees.
At both Nemours hospitals, active youth advisory councils (YACs) consist of about 15 patients aged 10 to 18 years. The YAC at the smaller Nemours hospital in Orlando, Florida, was instrumental in guiding the design of that hospital before it opened in 2012. And at AIDHC, the YAC offered design advice for a $260 million expansion in 2014.
Creative Ways to Limit Pain and Fear
What’s a child’s biggest fear in a medical setting? Getting poked with a needle. On recall, hospitalized children rate pain from needle sticks (for phlebotomy and IV placement) as more painful than any other procedure. Indeed, needle phobia from childhood can last a lifetime. Most children’s hospitals offer ways to limit pain from needle sticks, including pre-application of topical lidocaine cream or liquid.
Support from a child life specialist also can reduce anxiety and fear. These specialists often work with art, music, and animal-assisted therapists to enhance comfort, reduce pain, and make coping easier for children and their families. Pet therapy is well established in some adult care facilities, but the “healing arts” of a child life specialist draw from a larger repertoire that adult-care institutions could adapt to their populations. In short, pharmacologic agents are not the only pain-management tools that are age-agnostic.
To visitors. Many pediatric hospitals are dismantling visitation policies that restrict who can visit a patient — and when. At Nemours, we let the patient decide who should be at the bedside and at what hours. Adult patients deserve these choices as well.
To technology. Just as people are coming to expect access to technology in the outpatient setting (e.g., online scheduling, wireless Internet in clinics, patient portals), caregivers and teenage patients want to keep their connectivity as inpatients, in part because digital social networks are part of their support system. And patients today often want to communicate with health care professionals via mobile devices rather than by phone or on paper forms. Today’s Millennial and Gen Y parents in the pediatric setting are tomorrow’s adult-medicine patients and families who will expect technology to follow them into the care settings of the future.
To be sure, numerous adult health systems have made great strides in providing patient- and family-centered care. But because of its young patient population, the field of pediatrics has family involvement hardwired into its care processes. Just as pediatrics has learned from institutions that care for adult patients, adult medicine might find value in our family-centered approach.