The Meaning of Family Well-Being

I’m about to be a very lonely Patient Experience Lab (PXL) Lab Associate. For the past week, I’ve happily been stealing from our Experience Designers’ caffeine stash (highlights include chocolate-covered almonds with sea salt) and witnessing their preparation for the upcoming Participatory Design Studio (PDS). 

But now they're actually going to Dallas to facilitate that PDS, which means they're leaving me behind in the office with no chocolate-covered, sea-salted almonds in sight. Luckily, there's coffee in lieu of almonds - plus some food for thought about family well-being.

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The PDS is the next phase in our family well-being initiative, in partnership with Children's Health in Dallas, Texas (learn more about the project here). After going straight to the source to find out what well-being means for Dallas families and what challenges exist for them in striving for it, our team has been designing the first next step toward identifying and experimenting with solutions.

That step is a context and environment for a conversation to take place. They’re planning the activities, creating the materials, and translating the language they need to productively engage everyone in the system’s community  the families, key stakeholders, and Children’s Health – to talk about patient needs. Knowing that life outside the four walls of the hospital affects outcomes inside of them, how could community organizations collaborate to support families in striving for their own well-being? How could Children's Health’s current business models be adapted in order to truly address family’s needs in the process of striving to be well? The PDS will address these questions.

Witnessing the PDS design process has struck me personally in several ways (read more about design processes here, in our BIF Medium publication). First, I’ve been a teacher. Just like any teacher who has ever paid careful attention to the environment, the materials and resources, and the questions asked in hopes of inspiring student learning, I am humbled by the precision and emotional intelligence required to be an effective facilitator. As an observer of our PXL team's work, I have witnessed skill and care being applied to every detail of the process: the carefully phrased facilitator's guide and accessible materials (with plenty of space for input from families, Children's staff, and community stakeholders) are just the tip of the iceburg.

But perhaps even more striking? The potential impact of including patients' desires, fears, frustrations, and aspirations in conversations around healthcare  care that goes beyond health outcomes and extends to wellness.

Knowing that life outside the four walls of the hospital affects outcomes inside of  them, how might community organizations collaborate to support families in striving for their own well-being?

Take Atul Gawande’s recent work Being Mortal as just one example of the far-reaching impact of including the patient voice. The surgeon-cum-author's meditation on how we care for the frail, sick, and dying is replete with stories about patients who were able to reflect with their providers and families on what quality of life means when facing life's end.

When the provider asked the right questions, really heard the answers, and interpreted them into the care plans, patients made empowered choices that maximized their time. Meanwhile, needless spending on unwanted procedures and outcomes was avoided. Gawande's own father, an active physician, delayed invasive surgery as treatment for a spinal tumor. In exchange, he spent his last healthy days playing tennis, visiting with his grandchildren, and engaging with his professional circles - a life lived with respect for the limitations imposed by disease, but not compromised by them. 

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Our project in partnership with Children's Health is in the spirit of Gawande's recognition of the patient voice, but in a sense it is the necessary predecessor of the kinds of conversations he details in Being Mortal. Exploring well-being is an act of acknowledgment: we are all mortal patients who are striving to enjoy our short lives. Families seek healthcare that allows them to make the most of their limited time alive on this planet, in a way that feels relevant to them. Seeing Dallas families' voices as integral to defining what well-being means and how we can foster it is thus to recognize the validity, and importance, of families' perspectives on what gives their lives meaning and purpose - not only when they are facing illness, but on a day-to-day basis, when they are making the decisions that impact their future health and quality of life.

 

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