By Austine Duru
The importance of family support and presence in the healing process is not disputed. Family caregivers are often referred to as “hidden patients” (Kristjanson L., et al, 2011) because of the adverse effects of the burden of caregiving. Understanding the broader impact of disease, hospitalization, incarceration, mental illness, and transition to long-term care or hospice care becomes crucial when evaluated from the perspectives of family members and support persons. Such a perspective offers better insight into how chaplains can effectively support individuals and their families through major life-changing circumstances.
The term “patient-centered care” was coined in 1988 by the Picker/Commonwealth Program for Patient-Centered Care (now the Picker Institute) to call attention to the need for clinicians, staff, and healthcare systems to shift their focus away from diseases and back to the patient and family, (Gerteis M., Edgman-Levitan S., Daley J., Delbanco T., 1993). The term was meant to stress the importance of addressing patients’ needs within an increasingly complex and fragmented healthcare delivery system, a system that also includes the family and support persons. “Professional Chaplains in Comprehensive Patient-Centered Care” featured in the Rhode Island Medical Journal (2014), by Richelle C. Russell, a hospice chaplain, introduces readers to three case studies that illustrate the role of professional chaplains in mediating the complex relationships involved in caring for patients and their families. Although written for clinicians, this work underscores the role of chaplains in advocating for and encouraging person- and family-centered care.
Perhaps nowhere is family involvement more crucial than when children are the patients. Parents of sick children are often very vocal and passionate about advocating for their children, and everyone benefits from a well-coordinated care. This much is clear in the article published in 2014 titled Patient- and Family-Centered Care Coordination: A Framework for Integrating Care for Children and Youth Across Multiple Systems. This article says that understanding care coordination framework, its functions, and its effects on children and families is critical for patients and families themselves — as well as for pediatricians, pediatric medical subspecialists, and anyone providing services to children and families. It does not specifically call out the role of chaplains. But it describes chaplaincy as part of the support structures that benefit patients and families across care settings, leading to decreased healthcare costs, reduction in fragmented care, and improvement in the patient/family experience.
Often those who are overlooked in healthcare feel powerless to advocate for themselves, leading to increasing health disparities among segments of the population. Public policies are therefore needed to protect the interest of the community. A recent study by Kristin L. Carmen, et al., (2013) shows that patient and family engagement could address disparities in access and quality of healthcare for patients. Patient And Family Engagement: A Framework For Understanding The Elements And Developing Interventions And Policies offers a promising pathway toward better-quality health care, more efficient care, and improved population health. The study also explores the implications of a multidimensional framework to support patient and family engagement, and offers a research agenda to investigate how such engagement improves outcomes.
Molter (1979) paved the way for an extensive study of the needs of families of patients in the ICU, leading to the Critical Care Family Needs Inventory (CCFNI, Molter and Leske, 1983), which has been used in various forms in subsequent research projects. Family needs are often categorized into five domains: assurance, proximity, comfort, support, and information (Leske, 1992). Two fairly recent studies that built on some of these earlier successes provide a recent view of this practice. Supporting families in the ICU: A descriptive correlational study of informational support, anxiety, and satisfaction with care, Joanna J. Bailey, et al., (2010) showed that “Informational support provided to family members of ICU patients has significant potential for reducing their psychological distress, enabling them to better cope and support the patient. This cross-sectional descriptive correlational pilot study collected data from a convenience sample of 29 family members using self-report questionnaires. 22-bed medical-surgical intensive care unit of a 659-bed university affiliated teaching hospital in Montreal, Quebec, Canada.” Findings suggest a significant positive correlation between informational support and overall satisfaction with care.
In a related study, Jeffrey R. Johnson et al. (2014) evaluate the association of spiritual care to patients and families in the ICU and family satisfaction with ICU care. The prospective cohort study, The association of spiritual care providers’ activities with family members’ satisfaction with care after a death in the ICU, co-authored by NACC chaplain and CPE supervisor Sean Doll O’Mahoney, surveyed about 275 family members of ICU patients and 57 spiritual care providers. “Spiritual care providers commonly reported activities related to supporting religious and spiritual needs (>=90%) and providing support for family feelings (90%). Discussions about the patient’s wishes for end-of-life care and a greater number of spiritual care activities performed were both associated with increased overall family satisfaction with ICU care (p<0.05). Discussions about a patient’s end-of-life wishes, preparation for a family conference, and total number of activities performed were associated with improved family satisfaction with decision-making in the ICU (p<0.05).” The findings suggest that spiritual care interventions improve family satisfaction with ICU care, and show how chaplains can enhance intervention in the ICU by increasing their guidance for families making decisions for critically ill patients. This also provides valuable insights for chaplains working in the medical intensive care settings. NACC Executive Director David Lichter produced the article CHA Chaplaincy Surveys Offer Key Insights (2014), based on a survey of Catholic healthcare executives, clinicians and colleagues. The 2012 survey, conducted by a joint CHA and NACC Pastoral Care Advisory Committee, used CHA’s vast database of executives and clinicians. Regarding the purpose and value of professional chaplaincy, and what executives and clinicians want from chaplaincy support, responses consistently ranked high the following elements: providing a supportive presence for patients and families; offering prayer/ritual for patients and families; offering support for ethical questions and concerns; and providing staff support and attention to treating the whole person. This survey provides meaningful feedback for chaplains and chaplain educators who work with Catholic healthcare systems or organizations.
Austine Duru, BCC, is regional director of mission, ethics, and pastoral care at SSM Health in Madison, WI.