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Preparing to Fly

Posted By Stephanie Trudeau-Hern, Monday, June 16, 2014
Family-centered care was an inherent concept in my mind long before I could put language to the phenomenon. At 19 years of age, I bore witness to an exhausted mother of three who held two full time jobs. The first was considered a normal, socially accepted job. It paid the bills and provided basic necessities to keep a small household afloat. Her second job was a little more obscure; it was a job for which she had received no training, no support, no pay, and no recognition. She, at 37, became a spousal caregiver. Back in 1998 this was a foreign concept to healthcare systems in rural North Dakota. Caring for the caregiver, or even recognizing the impacts caregiving had on spouses and families, was essentially ignored. The patient, my father, was diagnosed with a rare autoimmune disease that rendered him physically, socially, and emotionally incapacitated. 

Fast forward 16 years…..

“He who would learn to fly one day must first learn to stand and walk and run and climb and dance; one cannot fly into flying.” ~Nietzsche

I am currently standing on the cusp of an evolution in healthcare; I am preparing for my time to fly. I have the opportunity to participate in a movement that has become my life’s mission, expanding the limited definition of “patient” to include the family as a unit of care, or the lens through which we advance treatment.

What is family-centered care? Who are family caregivers? I feel compelled to break this down into such a basic form, keeping in mind that not everyone reading my post has been bathing in the Collaborative Care Kool-Aid fountain that I have. Frank de Gruy, Susan McDaniel, Barry Jacobs, John Rolland, Bill Doherty collaborated efforts with Theodora Ooms, Jana Staton and Mary Myrick, of the National Healthy Marriage Resource Center (NHMRC) proposing additions to the Better Care, Lower Cost Act.

We need a common footing, and that footing is family-centered language In their document, the proposed language of family caregiving is as follows: “Family caregivers are spouses, partners, adult children, siblings, friends and neighbors who provide many kinds of support, assistance and, increasingly, help with medical procedures so as to enable millions of persons to remain living in their homes and communities. The term ‘family caregiver’ however obscures the unique legal, emotional and social characteristics of caregiving between spouses. Spousal presence and influence on chronic illness prevention, care, and treatment is much more common than generally acknowledged”.

Family-centered care as posed by AARP’s Person and Family-Centered Care (PFCC) definition is: “an orientation to the delivery of healthcare and supportive services that addresses an individual’s needs, goals, preferences, cultural traditions, family situation, and values. PFCC can improve care and quality of life by its focus on how services are delivered from the perspective of the older adult and, when appropriate, his or her family. PFCC both recognizes and supports the role of family caregivers, who often are critical sources of support for older adults with chronic or disabling conditions”.  

I am not here to give you a lesson on definitions, but I do believe we all need a common footing to move forward, and that footing is the common family–centered language from which we hope to operate. Why do we still need to educate others on concepts that seem so inherent to the patients and families affected by chronic illness? During my time as a Medical Family Therapist in an oncology center, it always astonished me that patients, spouses, and family members so easily grasped the concepts of family–centered care. When I would explain my systemic and relational approach to therapy, they would look at me and say, “Well yeah, isn’t that normal?” They got it; they lived it day in and day out. What they didn’t get was why the system they were entrusting their care to did not fully understand or address their complex needs. I found this disturbing. I realized that little had changed from when I was 19 and watched mother flail around lost in a systemic sea of individualized illness care plans.

Re-visiting the philosophical musings of Friedrich Nietzsche.

Before I can even begin to claim that someday I am going to play a pivotal role in affecting change, I have to recognize where I’ve been, where I’m at, and where I am going.

-I first learned to stand when I was embedded in a family system that was cloaked with chronic illness.
-Walking took place once I removed myself from that system and had a better look at the complex disruption my father’s illness had on every member of our family.
-My running phase took place the day my hands opened John Rolland’s Illness and Disability. The concept of family as patient changed my life.
-Climbing entailed changing careers, getting my masters in family therapy, and pursuing a PhD.
-The dance phase is where I am currently situated. The venue is my research assistantship, and family-centered integrative care models are my jam.

I am a fourth year doctoral research assistant working within a population health study aimed at late-life, chronic illness patients and families. The study, called LifeCourse, is testing an integrative care model that is based on understanding what matters most to patients and helps them to live according to their values and wishes. Among the study’s goals are improved quality of life and care experience for patients and families, more informed care decisions leading to better use of health care resources, and improved job satisfaction of doctors, nurses and other care team members. I am one of three family systems professionals (clinicians, educators, researchers) on the project. Since I began, I have scoured all aspects of the project from a family and systemic lens. I am continually asking, “Where is the family?”, “How does this impact the caregiver?”, “How are we assessing family?”, and “Who is the patient?” Maybe I am pushing the boundaries a little bit. Maybe I’m driven to help others learn from my experience. The way I see it, if those of us trained in family and systems are not the in the shadows feeding the notions of family-centered care to people in the front lines, who will? Let’s all recognize our chances to re-envision chronic illness care from patient-centered to family-centered. I am certain I have been prepping for this event most of my adult life and I refuse to miss my chance to fly. 

Stephanie Trudeau-Hern, MS, LAMFT is a doctoral student at the University of Minnesota in the Department of Family Social Science - Couple and Family Therapy Program. Her clinical and research interests include family-centered healthcare, integrative behavioral health, family coping with chronic illness, end-of-life issues, and provider self-care within collaborative health care teams. She credits her two little monkeys for being the most influential teachers of life, love, play, and well-being.

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