Q&A with the Scholars: Discussing Chronic Illness and End-of-Life Care
Katherine Rafferty, Ph.D., M.A., is a lecturer at Iowa State University and previously worked as a Health Communication Specialist for the Centers for Disease Control and Prevention (CDC) in Atlanta, Georgia. She conducts research that lies at the intersection of interpersonal and health communication, with a focus on how patients and families manage and cope with chronic illness and end-of-life care. Dr. Rafferty is one of our nearly 40 associate scholars. In this interview, she discusses some of her research and findings on chronic illnesses and end-of-life care.
How many Americans are living with chronic illness? What are some of the main coping mechanisms adopted by people diagnosed with a chronic illness, and what contributes to a holistic response to such a diagnosis?
Dr. Rafferty: Statistics vary based on which source you cite, but approximately half of all adults (117 million people) in the United States are living with one or more chronic health conditions. Of those people, one in four are diagnosed with two or more chronic conditions.
Individuals and families can cope with chronic illness in a variety of ways. My particular area of research looks at the communication practices within families that convey how families cope with chronic illness. Some families are able to foster a sense of hope and resilience amidst difficult diagnoses, while other families struggle and remain hopeless. Many families’ ability to remain hopeful and resilient is dependent on whether they receive helpful social support from other family members and people in their community.
What percentage of children are diagnosed with a chronic condition? How do these diagnoses impact the parents? How do their roles as parents change as caretaking and advocacy become larger parts of their lives?
Dr. Rafferty: Today, approximately 20% of all North American children have a chronic condition (e.g., diabetes, cerebral palsy, cancer) and 13.9% have special health care needs (e.g., learning accommodations, ongoing medications).
Parents have a pervasive and influential role in the pediatric health environment. When their child is diagnosed with a chronic condition, parents must assume new and unexpected responsibilities ranging from manual (e.g., tube feeding) to cerebral (e.g., coordinating appointments). On average, parents spend an extra 30 hours per week tending to the needs of their child’s chronic condition. Many parents regard parental advocacy as part of the caregiver role. Advocacy includes behaviors such as making medical decisions, garnering political support for legislative policies, and seeking out a network of support that has the research, knowledge, and skills to improve their child’s quality of life. Together, these advocacy behaviors are crucial for improving a child’s quality of life, as well as promoting changes that increase public awareness about their child and his or her condition.
From the physician’s perspective, what is the best way to approach working with the parents of a child diagnosed with a chronic condition to ensure that the child receives the best care while respecting the role of the parents in decision-making?
Dr. Rafferty: My area of research has focused on the family member’s perspectives, particularly parents. However, within this line of research we know that many parents desire collaborative care teams where parents and physicians work together and maintain open dialogue that fosters honesty with realistic hope. Parents and physicians each have a particular area of expertise regarding a child and his or her health, which needs to be respected in order to ensure that a child is receiving the best care possible.
How should families and spouses approach end-of-life care and related decision-making that respects the preferences of the dying while also respecting the dignity of life?
Dr. Rafferty: In my professional opinion, the best way to approach end-of-life (EOL) care and decision-making that respects all individuals within a family is by having open conversations about EOL preferences early on. These types of conversations help reduce the social stigma and taboo that is typically associated with EOL talk. You cannot understand or know someone’s dying wishes without asking them.
In regards to married individuals, although spouses have an integral role in helping their partner navigate the EOL experience, one-third of married couples report avoiding discussions about EOL preferences. Because of this avoidance, discrepancies exist between older adults’ dying wishes and where death actually occurs. For instance, even though 80% of patients prefer to die at home, most older adults die in a hospital. Communication theories, like the Theory of Motivated Information Management, proffer some theoretical insight that illustrates the significance of factors such as anxiety, uncertainty, relational quality, and self-efficacy that all significantly influence whether individuals decide to openly initiate or avoid talk about EOL preferences with their spouse or other family members.
Why are you pro-life? If you had 60 seconds to explain to someone why you have pursued the work that you have throughout your career, what do you tell them?
Dr. Rafferty: I am pro-life because I desire to respect the dignity and personhood of each individual from conception to natural death. These beliefs were first instilled in me by my parents and my Catholic upbringing. Then, as I started to personalize my Catholic faith, I began to understand that being pro-life is being whole-life. When people start to make exceptions to this human dignity for “certain” individuals, then it is a slippery slope where a person’s humanity becomes disregarded and disrespected, and this in turn affects all of humanity. The need to be pro-life was recently reaffirmed by my nephew’s short life and passing. My nephew was stillborn at 33 weeks. My sister and brother-in-law knew at 18 weeks that their son would likely be stillborn because he had triploidy. Although his life on earth was short, he has had a tremendous impact on all of my family and my sister’s friends. Thus, I believe that no life should be disregarded for any reason.
Dr. Rafferty’s full biography can be found here.
 Rafferty, K. A. (2015). Everything remains uncertain: Theorizing parents’ communication about uncertainty, hope, and hopelessness while managing complex pediatric chronic conditions. (Unpublished doctoral dissertation). University of Wisconsin–Milwaukee, Milwaukee, WI.
 Boyse, K., Boujaoude, L., & Laundy, J. (2012, November). Children with chronic conditions. Retrieved from http://www.med.umich.edu/yourchild/topics/chronic.htm#common.
 National Alliance for Caregiving & American Association for Retired People. (2009). Caregivers of children: A focused look at those caring for a child with special needs under the age of 18. Bethesda, MD: Author.
 Wright, A. C., & Taylor, S. (2014). Advocacy by parents of young children with special needs: Activities, processes, and perceived effectiveness. Journal of Social Service Research, 40, 591–605. doi:10.1080/01488376.2014.896850.
 Rafferty, K. A., & Sullivan, S. L. (in press). “‘You know the medicine, I know my kid’: Being a parental advocate for children with complex chronic conditions. Health Communication. doi: 10.1080/10410236.2016.1214221.
 Pew Research Center for the People and the Press. (2006, January 5). Strong public support for right to die: More Americans discussing—and planning—end-of-life treatment. Retrieved from http://people-press.org/reports/display.php3?ReportID=266.
 Johnson, T., Wang, J., & Metz, J. (2010, December 27). End-of-life care at home can improve quality of life for patients and families. ABCNews. Retrieved from http://abcnews.go.com/Health/physicianrecommends-end-life-conversations-patients/story?id=12458914.
 Afifi, W. A., & Afifi, T. D. (2009). Avoidance among adolescents in conversations about their parents’ relationship: Applying the theory of motivated information management. Journal of Social and Personal Relationships, 26, 488–511. doi:10.1177/0265407509350869.
 Rafferty, K. A., Cramer, E., Priddis, D., & Allen, M. (2015). Talking about end-of-life preferences in marriage: Applying the theory of motivated information management. Health Communication, 30, 409-418. doi:10.1080/10410236.2014.889555.