ACT.md Blog

Finding answers for children with undiagnosed complex medical conditions

By Dan Kamyck | June 8, 2017 at 4:04 PM

Families of children with rare disease, especially undiagnosed illnesses, often wait years for answers. For Nicole Donoghue, a mom in North Carolina, the task of coordinating diagnostic efforts among the 10 specialists serving her young son ultimately fell in her lap. This meant the burden of piecing it all together fell to her. In her own words:

What I really needed was a medical quarterback helping me navigate all the results, the assumptions, and our options. But my son did not have a medical quarterback; he had a tenacious mom unwilling to let her son’s ailments go unanswered. But we ran out of time.
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Finding joy in palliative care practice: one physician's perspective

By Dan Kamyck | May 24, 2017 at 4:39 PM

Four years ago, Dr. Kathryn Kirkland at Dartmouth-Hitchcock left the world of infectious disease–a world that "felt increasingly superficial, fragmented, isolated, a hard place to find joy and meaning"–for the world of palliative care. Through several patient stories in JAMA, she recounts three elements of practice which cultivate joy:

It’s funny how the world of palliative care, which each day brings us face-to-face with illness, with mortality, with heartbreak, is not a place of overwhelming sadness. Each day, instead, we find (or perhaps we cocreate) meaning, and even joy in our work. What core elements of our practice allow this to happen? 

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