A Paradigm Shift for Patient/Family-Centered Care in Intensive Care Units: Bring in the Family.

Q Open visitation by patients’ family members and significant others seems to be widely accepted. But family presence during complex and lifesaving procedures remains very controversial. What are best practices and how can I bring about change in my unit?A Angela P. Clark, rn, phd, acns-bc, and Cathie E. Guzzetta, rn, phd, reply:We believe that you are correct about the acceptance of these 2 unique interventions—open visitation and family presence during resuscitation and invasive procedures (FPDR). Surprisingly, these interventions share significant commonalities with respect to research findings and best practices for maintaining the family unit.Tracing the history of hospital care over multiple decades is fascinating. In the book The Care of Strangers: The Rise of America’s Hospital System,1 it is evident that family members went from being care providers in the home to outsiders as the new institutional culture of hospitals developed. As early as the late 1800s, nonpaying patients were not allowed to have visitors in an effort to establish order in the general wards (unlike paying patients!). In the book’s index, the word family does not even appear, only visitor.Family members have advocated for full access to intensive care units (ICUs) for decades.2 Fortunately, about 35 years ago, one hospital started the paradigm shift and allowed patients’ family members to be present during resuscitation with successful outcomes.3 Still, tradition and historical practices have remained the norm in most US hospitals for all forms of open visitation and FPDR. A large survey of ICUs (N = 606 hospitals in all regions of the United States) done in 2008 indicated that 89.6% of ICUs had restricted visiting.4 We were unable to find any newer studies to update these figures—but anecdotal evidence suggests that some improvement has occurred since 2008. A 2016 Wall Street Journal article5 noted that “ICUs ease restrictions on visitors” yet quoted the 2008 statistics. In 2010, new federal regulations from the Department of Health and Human Services and the Centers for Medicare and Medicaid Services6 stated that all hospitals must have written policies and procedures regarding visitation rights of patients, including any reasons for limiting the rights of patients to have family members or support people as visitors. These conditions of participation apply to all Medicare- and Medicaid-participating hospitals.6Families encounter it every day—a critically ill loved one is in the ICU receiving care while frightened family members are rushed away to await news of the patient’s condition. It is a traditional yet unrecorded edict of critical care and emergency medicine that family members are banned from the patient’s room during emergency procedures. Providers justify their actions on the basis of what they believe is best for the patient and the patient’s family. They fear that patients’ families will lose emotional control and interrupt patient care.7Yet, much research has been done on both open visitation and FPDR, and the findings have refuted all these traditional concerns. The key research conclusion documents that when patients’ family members are allowed access to the environment, patient care is not interrupted.7 Findings provide evidence about the benefits for family members: removing the family’s doubt about the patient’s situation and allowing them to see that everything possible is being done; reducing their anxiety and fear about what is happening to their loved one; maintaining the family unit and addressing family members’ need to be together.7 In addition, if death occurred, families reported that being present gave them a sense of closure and facilitated the grief process.7 As early as the 1990s, 96% of family members who experienced FPDR reported that they would do it again.8A recent argument in favor of patient/family-centered care in the ICU is the research about post-ICU syndrome among those who survive an acute illness. Separation of patients from their families is thought to be a leading contributor to posttraumatic stress syndrome.4 Family members are also at risk for significant emotional sequelae that might be mitigated with better access to their loved one. A large randomized controlled study of FPDR showed that family members who experienced FPDR actually had fewer symptoms of posttraumatic stress disorder, anxiety, and depression 90 days afterward than did family members who did not witness cardiopulmonary resuscitation.9A leading physician champion of ICU patient/family-centered care, Dr Don Berwick (former president and chief executive officer of the Institute for Healthcare Improvement and past administrator for the Centers for Medicare and Medicaid Services) wrote an oft-quoted editorial10 in which he proposed that patients’ family members be allowed unrestricted visiting hours in ICUs and refuted 3 main concerns of those who would resist the idea. First, physiological stress for the patient has not been found to increase with family present. Second, barriers to providing care have not been shown to occur, but rather family members more often serve to provide information, receive education, and facilitate communication between the patient and caregivers. Third, concerns about the exhaustion of family and friends have not been validated; rather, beneficial effects due to decreased anxiety and visitors’ ability to time visits when best for them have been observed.10More recently, Berwick began actively promoting greater family inclusion in critical care settings and has proposed that all critical care units eliminate restrictions for families by doing a trial run of 2 months of totally unrestricted visitation.11 He recommends several important points be included in this process: allow any patient to customize personal restrictions, track things gone wrong and do daily reviews to mitigate, collect positive exemplars of the experience, and engage family members about their needs along the way.11Two stellar practice alerts from the American Association of Critical-Care Nurses,12,13 recently updated (published in February 2016), provide national guidelines for nurse leaders to infuse best practices into their units. A wealth of information is found in both short papers: “Family Visitation in the Adult Intensive Care Unit”12 (5 pages, 51 references) and “Family Presence During Resuscitation and Invasive Procedures”13 (4 pages, 66 references). Both practice alerts include the scope and impact of the problem, expected practice, supporting evidence, actions for nursing practice, and additional resources if needed. They emphasize critical elements such as a family support person for FPDR and having unit protocols and procedures for both interventions that can make integration of these interventions in your unit a success.Indeed, there is broad consensus from experts and leaders about the merits of open visitation and FPDR. As a result of reviewing research evidence, many medical and nursing groups have signed on to support greater family inclusion into critical care settings, including FPDR. The Table lists some of the organizations that support offering the option of FPDR. Because accumulating research in resuscitation science supports FPDR as a feasible intervention, best evidence recommends that implementation of a FPDR program incorporate the use of national and international guidelines with written procedures. Nurses report that sharing this list with colleagues has helped implementation efforts considerably. Being largely nurse-driven interventions, FPDR and open visitation are generally implemented by nurses who are compelled to provide patient/family-centered care.7 However, acceptance of open visitation and FPDR is also growing in the medical community.Working to improve patient/family-centered care can be rewarding in critical care nursing practice and is a mark of excellence. An important driver of this practice change, much like allowing fathers to be present during labor and delivery, is that most families just want to be there.