CFHA Don Bloch Award Acceptance Speech, 2018.
Don Bloch as a Mentor
I'm going to tell you a story about the importance of Don Bloch to my life. As a postdoctoral fellow at Yale beginning to formulate my Family Systems Illness model, I was required to write a paper and submit it for publication. I submitted that paper to Family Systems Medicine (now Families, Systems, and Health) in 1984.
As background, I came from a first-generation German-Jewish refugee family. English was a second language for my parents. A near awful technical writer, after college Freshman English, I vowed never to take another course with a paper assignment. As a science major and medical student, I had made it to this point without doing another paper. So, I figured that this one would be quickly rejected, and I could move on.
One morning, I got a surprising call from Don, who was Founding Editor of the journal at that time. He said that he was very interested in the ideas in the paper and wanted to go over a few things. He began by suggesting that I add the word "Toward" to the submitted title, "A Typology of Chronic and Life-Threatening Illness." I thought, "Great, he hasn't even gotten to the first word of the paper and he's already correcting me. I knew that I should never have done this." Somewhat demoralized, I murmured, "What's next?" Don said, "That's it. I think this is an important contribution to the field. Congratulations, John! I look forward to seeing your next paper."
He was fully genuine and affirming. My whole perspective and hopes about writing shifted in that moment. Talk about instant mentoring! He opened the door for me in families and health. It became the focus of my career work. At the time that my first book, Families, Illness, and Disability: An Integrative Treatment Model, was published in 1994 (Rolland, 1994), I told my father that this proves that almost anything in life is possible. Even with my recent 2018 book, Helping Couples and Families Navigate Illness and Disability: An Integrated Approach (Rolland, 2018), I think back to that pivotal conversation with Don. Like most of my esteemed colleagues who have received this award, we all have our versions of "Were it not for Don...."
Why the Centrality of a Family Systems Approach? Another Story
At 27, illness struck in my life. Within a year, my mother had had a stroke and my first wife, Essie, was diagnosed with incurable cancer. I was a young physician and wholly unprepared for the toll these illnesses would take on me and my family. Growing up, no one in my immediate family had ever been seriously ill. There were stories of tragedy and loss, but none about how our family coped with life-threatening or terminal illness. I was at a loss.
Over the next 4 years, until Essie's death, I learned through trial and error many of the excruciating illness-related challenges that confront couples and families. It was an eye-opening, painful, and humbling experience, shattering any beliefs I held about youthful invulnerability. We encountered many of the relationship imbalances that often occur between ill and well spouses. We became increasingly isolated from other couples our age, many of whom were starting families and growing careers.
I became acutely aware of how little traditional mental health models had to offer couples and families in our situation. The predominant focus on individual pathology simply didn't jibe with the many normative relationship issues we faced. Digging through the literature, I found scattered accounts of personal resilience but little in terms of how couples and families can adapt well, and even grow stronger, in the face of illness. What kind of information and support could've better helped us and our family members cope and adapt at different illness phases? This question provided a new and empowering lens through which to view my personal experience, but it also motivated me to think about a model that would help all couples and families challenged by illness or disability. It guided my work as I developed the family systems illness model and applying it to clinical practice and health care services program design and implementation.
A fundamental conviction of this model is that any couple and family facing illness and disability should routinely be offered a family prevention-oriented consultation near the time of a condition's onset, as well as continued access to such services over the course of the condition. This affirms a partnership with families, especially caregiving members, seeing them as a valuable resource in collaborative care. It engages them in a resilience-based biopsychosocial model of care from the outset. And it identifies couples and families at high risk of maladaptation to the challenges ahead. Over time, consultations and brief interventions can be provided at key illness, family, and individual member developmental transitions. At core, "health-related family unit" is considered the psychosocial hub for effective coping and adaptation.
Moving Integrated Care Forward
We need to partner with families as an essential resource in both clinical services and now as we move increasingly into the advocacy and policy levels. Our professional knowledge and skills have limits. Consumer family and community expertise is the other essential component in forging optimal collaboration. Together, we must advocate for a humane, responsive system of health care that provides an integrated family-oriented vision of care not as a privilege but as a basic right for all patients and their families.
Chronic conditions inherently draw the patient's family and community networks into a broader caregiving team. There is substantial evidence for the physical and mental health morbidity over time for family members involved in intense and protracted caregiving. At the same time, specialty care, especially with the rapid expansion of rehabilitation medicine, palliative care (including hospice), and geriatric health care, offers huge opportunities for family-oriented integrated care. The burgeoning field of genomic medicine is by definition family based. My concern is the development of parallel silos. With multiple and complex medical conditions, the cast of specialists operating in their own "silos" can bewilder patients and result in disconnected care applied to different body parts and systems. Primary care providers have a crucial role in helping patients "connect the dots." CFHA can provide the vision and leadership to forge stronger relationships between primary and specialty health care.
Early involvement of patients and their families in a prevention, resilience, and psychoeducation-oriented model of care is the best foundation for effective collaboration. It is not about deep-dish family therapy. It is about the inclusion of family systems principles by all health care disciplines, in all health care settings, at any phase of treatment. Each of us plays a role in the success of enacting this principle. It complements and strengthens all other models, such as primary care behavioral health.
Professional education and service delivery models need to better address the psychosocial needs of families facing major health conditions. Basic knowledge about family systems and the normative psychosocial demands of various health disorders throughout illness phases should be included in the education of all health and mental health care professionals.
Finally, I want to acknowledge my wife, Froma Walsh, for her love, support, wisdom, and collaboration in founding and directing the Chicago Center for Family Health these past 27 years. Also, I want to acknowledge the many exceptional families I have been privileged to work with and learn from in their quest to live well despite illness and disability.
Thank you CFHA for honoring me in this way.
Rolland, J. S. (1994). Families, illness, & disability: An integrative model. New York, NY: Basic Books.
Rolland, J. S. (2018). Helping couples and families navigate illness and disability: An integrated approach. New York, NY: Guilford.
Received January 2, 2019
Accepted January 11, 2019
John S. Rolland, MD, MPH
Northwestern University Feinberg School of Medicine and Chicago Center for Family Health
John S. Rolland, MD, MPH, Department of Psychiatry and Behavioral Sciences, Northwestern University Feinberg School of Medicine, and Chicago Center for Family Health.
Correspondence concerning this article should be addressed to John S. Rolland, Chicago Center for Family Health, 20 North Wacker Drive, 1442, Chicago IL 60606.
E-mail : john.rolland[c]northwestern.edu