Spring 2004 Newsletter   click for links to other newsletter pages

Interview with
Donald R. Swartz, MD
Director, Div of Health Improvement VT Dept of Health 

What was the catalyst for you getting involved with the Parent to Parent (P2P) Advisory Committee 20 years ago?  What has inspired you to remain committed to the mission of Parent to Parent and teaching family-centered care for all this time?
I began my practice in 1967 and by the time the Advisory Committee began, I was becoming aware that there were lots of needs of families that were important to their child's health and well-being that I could not address as a physician.  P2P was part of the answer.  Twenty years later, the problems for families are not different, the capacity of physicians to address the extended scope of issues important to the health of children is not different, and P2P is still a big part of the answer.



What has been the evolution of your thinking about family-centered care? 
When you figure out that as a physician there are needs important to a child's health that you cannot meet, you are forced to recognize that medical care is only a part of health care, and that the part of health that is in the purview of the physician must be kept in balance with the rest.  Balance requires choices made in a larger universe than that occupied by any single option.  Families occupy that universe and physicians offer a segment of the options.  I am now working to systematize family-centered care (or patient-directed care) throughout how we deliver human services.


In what ways has your belief in, as well as teaching and mentorship of the principles of family-centered care impacted others?
I suspect that the greatest impact has been on families whose struggles may have been reduced because I had developed a family-centered system in my practice.  It may also have led them to expect and engender a similar kind of relationship with other providers.  Policies and practices are such fragile shelters in the face of "how we have always done it" and "this is how I was taught to do it".   The greatest opportunity is the influencing of the development of values and expectations of practitioners in their formative periods.

 What must happen for broad-based institutional change to occur so that family-centered care (FCC) becomes more widespread and integrated into pediatric practice?
The principles of family-centered care can't be the issue de jour - used to promote an agenda - families know better - they know when family-centered care is authentic.  If family-centered care is an institutional imperative there would be no choice other than being family-centered.  It requires leadership.  In our culture, we live in two value systems. One is measured by money, and the other is measured in values.  We are happiest when our values are met and we are earning enough money.  But when we get pushed off the balance point there is discomfort, and the greatest discomfort seems to come from the money side.  The reason we are not currently family-centered is that providers cannot figure out how to be family-centered and still address the money side.  Or said another way, if the money side was not in negative balance, the values that favor FCC (beneficence, rewards of helping others, etc.) would outweigh the arguments that stand against FCC (professional pride, professional autonomy, professional divinity).  So, institutionalizing FCC will require us to recognize that the product of health care is service and pay for the service of being made or maintained healthy.  In contrast, what we are now paying for in health care is product, i.e. procedures like office visits or operations, without regard for the impact of those products on the healthiness we are seeking.  Along with realigning our payment system, we must also foster realignment of the professional's understanding of his/her role and responsibility in the system from "captain of the ship" to expert advisor, and the role of the patient from the one to whom care is provided to the one who determines the care.

What must be in place for family-centered care to be a standard of care for all families, not just children with special health needs (CSHN)?
The real question is what must be in place for family-centered care to be the standard of care. Period.  I think we should stop advocating for FCC as a tool needed by CSHN because in the context of any illness-related encounter with the health care system, everyone has a special need and needs to access the same level of informed self-determination.  This comment is not intended to devalue the magnitude of the interactions with the system that CSHN need to have, or the importance of the degree of difference FCC can make for them compared to the patient with an acute and curable problem.  It does help universalize the experience, however.  If we were providing patient directed care to everyone else, we could easily provide it to CSHN. 

Spring 2004 - In this Issue:
From our Director
Family Support Report
Family Voices of Vermont
20th Anniversary Reflections
Family-Centered Care
Thanks to David Stifler, MD
Interview with Don Swartz, MD
Books & Beyond
Heartfelt Thanks

Our Calendar | News & Note

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