In the last decade, a much-needed emphasis on the partnership between patients and health care providers regarding care has emerged. In principle, the concept is on point. In implementation, it has perhaps fallen way short of reaching the goal. The question, then, that has to be asked is: Can we actually reach the ideal state, or is it perhaps a bridge too far?
In theory, there are no negatives to the practice of family-centered care. Born out of pediatrics, where family must be engaged due to the young age of the patients and is the primary source of support for the child, the first incarnation of family-centered care was the medical home to assist in coordination of care for children with special health care needs. The concept then moved to the inpatient arena, with the idea that each patient is unique and that those differences should be respected and honored; that care is a collaboration of family and physician; and that treatment plans and options are negotiated so they fit into the needs of whatever constitutes the community in which the patient resides. The principles are sound and unlikely to be argued by care teams, yet meeting these objectives has proved difficult at best. Some advancements in family-centered care have been made, like recognition that open visitation, access to siblings and family as allies in calming fears for procedures is helpful, but the impact has been far less than the vision would promise on paper.
The issue is most likely related to implementation of the family-centered care model rather than the model itself. Health care professionals are often assumed to be experts in all things, including communication and negotiation skills. These are not the lessons taught in medical school. The focus there is on development of the critical knowledge base for the safe practice of medicine.
So where are these skills taught? Unfortunately for many, they are achieved through on-the-job exposure. Physicians may confuse involvement of the family with maintaining their happiness with the team. This may lead to defaulting to relatives on some medical decisions, crossing into the realm of family-driven care to maintain the satisfaction metric. In addition, families are not counseled in how to effectively advocate for their child in complex medical issues. They may feel pressure to weigh in on diagnostic or treatment issues for which they have no basis to make a judgment. The result may be rounds at the bedside where no one has an optimal idea of the roles everyone will serve. This, in turn, has the exact opposite effect that family-centered care was designed to promote.
So how does the health care industry truly meet the very noble cause of family-centered care? One prerequisite for success is to remember that families, above all, want safe health care for their loved ones. The concept of bedside rounds involving the family should be focused on increasing the information gleaned from the caregiver that may clarify the next steps the care team should take. In addition, communication and transparency about the medical plan should be the goal for the care team, so they can take advantage of this modality to clarify the plan for the family, not present an expectation that the family will direct the next steps. Determining how the plans will impact the quality of life for the child and the family should be the major focus of discussion, not which tests or therapies should be employed. Learners like medical students and residents would also benefit when this is done well, as it gives them a chance to imprint behaviors from their mentors on the proper way to partner with family in the care of children.
In addition, hospital organizations and the payers need to take an active role in promoting family-centered care beyond the bedside. Some hospital systems have successfully incorporated parents and caregivers into roles that help guide incorporation of principles of family-centered care into strategic planning and implementation, particularly in the realm of quality and safety. All too often, these programs have followed a sentinel event, where a child has been harmed because the family was not in a position to effectively be heard by the care team.
We need to be proactive and involve families in multiple ways before events occur. Many hospitals have patient and family advisory councils. These programs need to be robust and inform the organization in an active way, not just be a forum for passive discussion. They need to work from the perspective on tools that assist families in optimal advocacy, while not obstructing necessary health care decisions. Medical schools need to make sure the concepts of family-centered care are integrated into training curricula everywhere and make this a competency requirement for all graduates. We need to design health care teams to be more consistent in approach. We also need to take another look at how often providers change and define the detrimental effects of those rotations on relationships we need with families so that they feel empowered.
Nationally, there are also opportunities to support and evolve the practice of family-centered care. Rewarding providers for success in this endeavor should have equal weight as satisfaction scores. Metrics need to be identified and tools that actually reflect the experience need to be designed, as the current surveys in use to measure satisfaction have serious limitations. In addition, payers need to acknowledge the necessity of family-centered care in optimizing patient outcomes, and commit to reimbursing in such a way that the extra time and training for its performance are valued.
Every successful relationship is a partnership. The stakes for the patient are some of highest, as the risk can potentially be great. To be successful in supporting a healthy population, we need to be certain that care will be compliant beyond the walls of the hospital, and that will require the family as partners. We have everything to win and nothing to lose. We just have to reach higher to grab that brass ring.
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Family-Centered Care: The Brass Ring of Health Care? originally appeared on usnews.com