By Beverley H. Johnson and Deborah L. Dokken
In 2001, Christina Puchalski wrote, “Compassionate care calls physicians to walk with people in the midst of their pain, to be partners with patients rather than experts dictating information to them.
In that excerpt from The Role of Spirituality in Health Care, Puchalski, a leading advocate for integrating spirituality into the practice of medicine, aptly describes the essence of patient- and family-centered care. PFCC is defined as:
In patient- and family-centered care, patients and families themselves define “family” and determine how they will participate in care and decision-making. A key goal is to promote the health and well being of both individuals and families and to maintain their dignity and control (Johnson and Abraham, 2012, p. 4).
Patients and families are experts about their own lives, experiences, and health. As a result, they can be essential allies for quality and safety — not only in direct care but also in quality improvement and other healthcare redesign initiatives.
Within hospitals and health systems, chaplains can play an important role in advancing those core concepts by interacting directly with patients and families. Often clinicians and staff are uncomfortable discussing spirituality or religion. Yet “most Americans consider themselves either religious or spiritual … many view spirituality as a vital aspect of the illness experience.” (Feudtner, 2003). Various studies have shown that patients want clinicians to understand their spiritual beliefs (Puchalski, 2001).
Understanding spirituality in the lives of patients and families is an important step in building partnerships that benefit both care and decision-making. Chaplains are uniquely qualified to raise this issue and, as a result, can:
- Help patients and families identify and articulate their values and beliefs, especially related to illness, suffering, and even dying.
- Work with patients and families to communicate those values and beliefs to clinicians and staff.
- Support patients and families in decision-making about treatment options, consideration of withdrawal of treatment, and other complex ethical questions.
- If necessary, with end-of-life care, facilitate rituals and meaning-making that support the spiritual values and beliefs of families.
Just as chaplains have an important role with patients and families related to PFCC and its core concepts, they also can be very helpful in working with staff, clinicians, and trainees. They can offer support in difficult or complex cases, or educate them about spirituality and its importance to many patients and families, and help them feel comfortable discussing it. They can also introduce tools like Puchalski’s FICA questions, adapted by George Fitchett, to use in taking “spiritual histories” of both patients and families.
I: Is it important to you?
C: Are you a part of a religious community?
A: How would you like me to address these issues with you?
(Fitchett, 2002)
For many healthcare organizations, a commitment to patient- and family-centered care represents a profound change in organizational culture — a shift from expertise being held solely by clinicians to sharing expertise and decision-making in partnerships with patients and families. In addition to their direct work with patients and families and staff, chaplains have knowledge, skills, and insights that can be applied more broadly within hospitals and health systems as they advance the practice of patient- and family-centered care.
At a number of hospitals and health systems, chaplains actually lead PFCC initiatives. For example, at SSM Health Wisconsin, NACC member Austine Duru, MDiv, MA, BCC, is the regional director of mission, ethics, and pastoral care. He also serves as co-facilitator for the Patient and Family Advisory Council and on a steering committee that promotes patient- and family-centered care at SSM Health St. Mary’s, Madison.
- Dignity and respect. Healthcare practitioners listen to and honor patient and family perspectives and choices. Patient and family knowledge, values, beliefs, and cultural backgrounds are incorporated into care.
- Information sharing. Healthcare practitioners communicate and share complete and unbiased information with patients and families in ways that are affirming and useful. Patients and families receive timely, complete, and accurate information in order to effectively participate in care and decision-making.
- Participation. Patients and families are encouraged and supported in participating in care and decision-making at the level they choose.
- Collaboration. Patients, families, practitioners, and healthcare leaders collaborate in policy and program development, implementation, and evaluation; in facility design; and in professional education and research, as well as in the delivery of care (Adapted from Johnson and Abraham, 2012).
Even if they do not lead the initiative, chaplains can also serve on patient and family advisory councils or nominate potential patient and family advisors. They can serve on teams charged with changing policies that restrict the presence of families (visiting hours) and implementing welcoming policies and practices. Chaplains often are sensitive to people’s emotions and to the relationships within groups. When quality improvement or safety teams are trying to advance PFCC, chaplains can help address fears, concerns, and discomfort of staff about working in new ways — in partnership with patients and families.
For example, as members of teams changing policy and practice about family presence during resuscitation, chaplains can bring new insights about supporting both families and staff and clinicians involved in codes.
Less formally, chaplains can be actively involved in patient/family meetings, especially at the time of discharge and other transitions in care, and help identify and contact community supports for patients and families, including religious communities.
Patient- and family-centered care, and its emphasis on building authentic partnerships with patients and families, requires the commitment of every member of the interdisciplinary team. Chaplains can play an invaluable role in supporting patients, families, and staff but also in advancing institution-wide PFCC initiatives.
Beverley H. Johnson is president and Deborah L. Dokken is family consultant of the Institute for Patient- and Family-Centered Care, which provides national and international leadership to advance patient- and family-centered care in all healthcare settings.
References
Feudtner, C., Haney, J., and Dimmers, M.A. (2003). Spiritual care needs of hospitalized children and their families: A national survey of pastoral care providers’ perceptions. Pediatrics, 111(1), 67-72.
Fitchett, G. (2002). Assessing Spiritual Needs: A Guide for Caregivers. Academic Renewal Press.
Johnson B.H., Abraham, M.R. (2012). Partnering with Patients, Residents, and Families — A Resource for Leaders of Hospitals, Ambulatory Care Settings, and Long-Term Care Communities. Bethesda, MD: Institute for Patient- and Family-Centered Care.
Puchalski, C.M. (2001). The role of spirituality in healthcare. Proceedings (Baylor University. Medical Center), 14(4), 352–357.
