Engaging Families as True Partners During Hospitalization

SDM is the process by which providers and patients make decisions together by balancing clinical evidence with patient preferences and values.²² However, despite providers believing they are engaging in SDM,^23,24 families report they are often not as involved in SDM as they would like.^24-26 Indeed, most hospital communications with families, including FCRs and discharge instructions, typically emphasize information sharing, not SDM. SDM tends to be more commonly applied in outpatient settings.²⁷ To encourage SDM in the hospital setting, patients and families should not only understand communication during FCRs and at discharge but should be encouraged to be active participants in developing care plans,²⁶ no matter how minor the decisions involved.²⁸ SDM can be applied to a variety of discussions, both during hospitalization (eg, initiation of antibiotics, transition from intravenous to oral medications, pursuing imaging) and at discharge (eg, assessing discharge readiness, deciding duration of therapy, formulating follow-up recommendations). Providers will benefit from incorporating information from personal and medical histories that only families possess, resulting in more informed and potentially safer care plans that may be more likely to fit into the family’s life at home. SDM can also ensure patient and family “buy-in” and increase the likelihood of compliance with the shared plan.

Discharge processes often involve multiple redundancies and parallel processes that fail to actively involve families or promote transparency.²⁹ Discharge summaries are typically written in medical jargon and intended for the outpatient provider (who may not receive them in a timely fashion), not the family.^30-32 Separate discharge instructions are often provided to families without sufficient attention to health literacy, contingency planning, or individualization (eg, a generic asthma fact sheet).³⁰ Outpatient providers are not always contacted directly about the hospitalization, nor are families always informed when providers are contacted, as Solan et al. describe.

Providers can apply lessons from FCRs to discharge processes, pursuing a similar family-centered, interprofessional approach promoting partnership and transparency. Just as providers engage families during discussions on FCRs, they can engage families in discharge conversations with outpatient providers and nursing colleagues. Indeed, Berry et al. propose a discharge framework that emphasizes involvement of and dialogue between patients, families, and providers as they systematically develop and assess plans for discharge and postdischarge care.³³ To accomplish this, inpatient providers can copy families on discharge summaries and other correspondence with outpatient providers (eg, through secure emails or open-source notes such as OpenNotes^34-36). Moreover, particularly for complex discharges, inpatient providers can call outpatient providers in the family’s presence or invite outpatient providers to join—via telephone or videoconference—day-of-discharge FCRs or discharge huddles. Such efforts require logistical and pragmatic considerations, as well as culture change, but are not insurmountable and may help address many family concerns around peridischarge communication and care. Such efforts may also promote accountability on the part of families and providers alike, thereby ensuring that families are truly engaged as vigilant partners in care.

As one of us (SC) reflected once when considering her experience navigating healthcare as a parent of 2 children with cystic fibrosis, “We have to make it easier for families to be a true part of their children’s care. When patients and families are true members of the medical team, care is more informed, more targeted, and more safe for everyone.”

Disclosure: Dr. Landrigan has consulted with and holds equity in the I-PASS Patient Safety Institute, a company that seeks to train institutions in best handoff practices and aid in their implementation. Dr. Landrigan is supported in part by the Children’s Hospital Association for his work as an Executive Council member of the Pediatric Research in Inpatient Settings (PRIS) network. Dr. Landrigan has also served as a paid consultant to Virgin Pulse to help develop a Sleep and Health Program. In addition, Dr. Landrigan has received monetary awards, honoraria, and travel reimbursement from multiple academic and professional organizations for teaching and consulting on sleep deprivation, physician performance, handoffs, and safety and has served as an expert witness in cases regarding patient safety and sleep deprivation.