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Ruth M. Kleinpell, RN-CS, PhD, FCCM
As intensive care unit (ICU) clinicians, our personal experiences with family members in the ICU influence our beliefs and, as a result, our attitudes and practices toward family-focused care in the ICU. It is well accepted that hospitalization for a critical illness is a stressful event—not only for the patient but also for the family. Rarely is a critical illness event expected or predicted. There is no chance to prepare. Life is disrupted and, for some family members, it will never be the same.
In the movie Collateral Beauty,1 three colleagues attempt to help a New York advertising executive, played by Will Smith, whose six-year-old daughter died of a glioblastomamultiforme after being taken off life support. After a prolonged period of grieving he still struggles to accept the circumstances.
Similarly, families of critically ill patients face many challenges as they attempt to cope with an ICU hospitalization and a critical illness episode.
Families have a unique perspective as they see their loved one as a person, not an illness. Family members are the patient’s primary advocates—they know the patient best. As ICU clinicians, we have the ability not only to provide care to address the patient’s critical illness, but also to build a personal connection to patients and their family members and empower them to become partners in care. This is most beneficial as family members can help to inform the ICU team of patient-related characteristics or circumstancesthat may impact their ICU illness or of possible interventions that may help their recovery.
Needs of Families During Critical Illness
My first experience with research was as a master’s degree student at the University of Illinois College of Nursing in Chicago, Illinois, USA. In those days, a master’s degree required a thesis based on research conducted by the student. Having worked in the ICU setting for twelve years by then, my interest gravitated toward conducting research related to ICU care. A literature review piqued my interest in assessing the needs of families during critical illness. I contacted Jane Leske, PhD, who had developed the Critical Care Family Needs Inventory, which assessed the needs of families with a family member in the ICU. I received permission to use the tool and conducted a study using it to assess the needs that were important to ICU family members. This experience required that I spend time in the ICU waiting room for several months, asking family members if they would complete the survey. It also provided insights into the experiences of family members. Visiting hours were restricted then—three times a day for one hour at a time. The belief was that family visits might be stressful to the patient. That was also when we restricted ice water for patients after a myocardial infarction as a coronary precaution. Luckily, clinical practice is now guided by evidence rather than by beliefs or habits.
That experience with research led to my first databased publication, “Needs of Families of Critically Ill Patients,” published in Critical Care Nursing in 1991.2 The results of the study identified that the most important need for families was to have information, followed by the need to visit. These were findings found in similar research that substantiated that families have prioritized areas of needs, including the need to:
• Receive information
• Be notified of changes in the patient’s condition
• Be near the patient
• Be assured that the best care is being given to the patient
Family-focused care acknowledges the needs of families and identifies key areas of importance, including:
• Keeping patients and families informed
• Actively involving patients and families in decision-making
• Actively involving patients and families in self-management
• Providing both physical comfort and emotional support to patients and families
• Maintaining a clear understanding of patients’ concepts of illness and cultural beliefs
SCCM’s Role in Leading Family-Focused Care
SCCM has supported a number of initiatives focused on supporting families of critically ill patients. The new Society guidelines for family-centered care in the neonatal, pediatric, and adult ICU, released this year at Congress, highlight the role that structured interventions and approaches can take in helping to mitigate the impact of the crisis of critical illness as well as preparing family members for decision-making and caregiving demands. Since the first clinical practice guideline for support of the family of critically ill patients from the American College of Critical Care Medicine was published in 2007,3 the Society has continued to support optimizing family-centered care for the global community of ICU clinicians who care for patients and family members of all age groups.
As part of the ICU Liberation initiative, over 70 adult and pediatric ICU teams participated in an 18-month collaborative to implement the ABCDEF bundle, supported with a grant from the Gordon and Betty Moore Foundation. Within the bundle, the “F” element, Family Engagement and Empowerment, focuses on examining the concept of family presence and involvement in the ICU and identifying strategies to create family engagement and empowerment. As part of the collaborative, teams focused on implementing the bundle components, including family care in the ICU, and shared their experiences with other teams. The ICU Liberation collaborative recently ended, and teams are moving forward to report and publish their findings—results that will help inform the critical care community on strategies to further advance care in the ICU.
New in 2016, the Society launched a national collaborative aimed at helping hospitals implement patientand family engagement programs. A total of 63 ICU teams are participating in the Patient-Centered Outcomes Research – Intensive Care Unit (PCORICU) Collaborative: Improving Care for Critically Ill Patients and Families Through Research Dissemination and Implementation. This program is funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award. The teams are participating in a 10-month collaborative to implement a patient and family engagement initiative focusing on one of the following initiatives:4
• Integrating patient and family participation in rounds (patient- and family-centered rounds
• Integrating structured patient and family care conferences to mutually establish the goals of care
• Disseminating information and providing support to families about ways to assist with the care of their loved one
• Implementing open visitation (nonrestricted ICU hours)
• Facilitating the use of patient and family ICU diaries Implementing integrative therapies, such as music or pets, in the ICU setting
• Forming or enhancing an effective patient and family advisory group
• Other project of the team’s choice relevant to patientand family-centered care
Informed by a nine-member patient and family advisory group—the first such advisory group for SCCM—the collaborative is sharing strategies for implementing system changes to promote family-focused care in the ICU. Through monthly collaborative calls, webinars, and the use of an e-community, teams are sharing lessons learned to help promote family-focused care in the ICU. We look forward to sharing the results of the collaborative later this year as well as having the teams disseminate their findings to further benefit ICU clinicians worldwide.
In conjunction with THRIVE, SCCM’s initiative to support post-ICU care for patients and family members, including post-ICU clinics, peer support networks, and interventions to address care after an ICU hospitalization, the Society continues to support a number of initiatives to enhance family-centered care in the ICU. These measures benefit patients and families, which in turn benefit ICU clinicians in helping to provide optimal care in the ICU.
Families experiencing the ICU hospitalization of a loved aone have powerful stories. Their experiences reinforce the importance of involving families in ICU care. As part of the PCOR-ICU collaborative, a recent monthly call featured a clinician team along with a family member of a patient who had died in the ICU. The experiences that the family member shared were so very insightful. They highlighted that the ICU clinicians were instrumental in helping them understand the prognosis and that involving them in the daily care and decision-making were so valuable and meaningful to them. Their time in the ICU and their involvement in care provided comfort to them in a time of great need. As a result of their experience, they now serve on a patient and family advisory board for the hospital to help the clinical staff implement support measures for current families. From planning family-based activities, special events, and support programs, to posting Facebook communications, the advisory board works with staff to provide a supportive environment for families.
I would be most interested in your experiences in advancing family-focused care in the ICU. Please email me at President@sccm.org to share how you are working to promote family-centered care in the ICU. As always, thanks for your ongoing commitment to improving and advancing care for critically ill patients and their family members!
1. Frankel D, director. Collateral Beauty. Los Angeles, CA: New Line Cinema; 2016.
2. Kleinpell RM. Needs of families of critically ill patients: a literature review. Crit Care Nurse. 1991 Sep;11(8):34;38-40.
3. Davidson JE, Powers K, Hedayat KM, et al; American College of Critical Care Medicine Task Force 2004-2005, Society of Critical Care Medicine. Clinical practice guidelines for support of the family in the patient-centered intensive care unit: American College of Critical Care Medicine Task Force 2004-2005. Crit Care Med. 2007 Feb;35(2):605-622.
4. Society of Critical Care Medicine. PCOR-ICU Collaborative. Mt. Prospect, IL: Society of Critical Care Medicine; 2017.