“There’s a Person in There”

By Joe Burns

The elderly female patient was a frequent visitor of the dermatology clinic.  Her physician had provided routine care for her, removing suspicious spots for decades.  Today she was presenting for an exacerbation of her psoriasis.  We entered the room and the patient was visibly distraught.  She was wearing a wrinkled t-shirt and old jeans, a stark contrast to her usual Southern Lilly Pulitzer dresses.  As we began taking her history, she broke down, bawling over her psoriasis…
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Caregiving: Can It Be An Attribute of Our Healthcare System?

By David C. Leach

An old joke begins by asking that you imagine a man drowning 100 feet offshore while a conservative and a liberal are observing.  The conservative throws him a 50 foot rope and says: “swim the extra distance, it’s good for you.”  The liberal, on the other hand, throws him a 100 foot line and then promptly drops his end of the line in order to go and do another good deed.

While offering insight into our politics the story also illuminates some of our habits around caregiving in our current healthcare system and the policies supporting that system.  Certainly individual stories of near heroic caring can be found, but the system itself is designed around processes and structures that seem to diminish the importance of the caring relationships at the heart of our work.  Caregivers frequently depend on work arounds.  What would it take to develop a system that respects, rewards, or at least enables genuine caregiving?

Caregiving, of course, is an attribute of humans, not systems.  To care for another requires a voluntary opening of the heart to compassion; it requires noticing and acknowledging the uniqueness of the other and a willingness to enter into their context.  Keenan defines mercy as the willingness to enter into the chaos of the other.  (1) The biblical story of the Good Samaritan (Luke, 10:33) illuminates an interesting attribute of caregiving that may indicate why humans can care and systems cannot; the clue is in the voice of the verbs used.  The story is well known: a traveler has been assaulted and robbed. Two others pass by without helping while the third, a Samaritan, “was moved by compassion” and stopped to help.  I believe that the passive voice of the verb is not an accident.  The first step in caring is to allow oneself to be moved by compassion.  “Be compassionate” doesn’t fit naturally on a to do list; the initial step is not a “doing” but an emergent openness when one has been moved.  Subsequently there may be many action steps, but it starts by being moved by something greater than the caregiver…
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Growing Up with Doctors: A Mother’s Reflection on Physicians, Healthcare Teams, and a Lifetime with Spina Bifida

By Marsha Miller

Almost ten years ago, I wrote a story about my experience navigating the healthcare system as a young woman with a myelomeningocele baby.  It was a story about “forgiveness” because my baby was two-months old before his back was closed, his brain shunted, and his prolapsed rectum repaired. It was a system failure.  Now, I would like to talk about how different medical encounters can be when a person with a disability is an adult rather than a pediatric patient…
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