“As She Lay Dying” – a son calls on the health system to involve patients and families in improving safety

Warning: this doesn’t end well. Not for anyone in the story. Unless it changes you, as it did me.

Jonathan Welch, MD, teaches at Harvard Medical School and practices in the ER at Brigham and Women’s Hospital in Boston. But, as is often the case in life, the information that really matters is more personal: he loved his mom very, very much and, because of a series of medical errors, she died unnecessarily early and in anguish.

He is sharing his family’s story in Health Affairs as a way to wring meaning from this tragedy: “As She Lay Dying: How I Fought To Stop Medical Errors From Killing My Mom.”

Dr. Welch sent me an early copy and I read it in tandem with a story published in The Washington Post that day: “The lonely path from hospital to home: A nurse learns firsthand the pitfalls of post-hospital care when her husband suffers a stroke,” by Beth Ann Swan, RN. (It turns out that the two stories are part of the Health Affairs series, Narrative Matters.)

My overwhelming reaction to both essays was despair. If clinicians can’t get decent, safe care for their loved ones, what hope do the rest of us have?

When I’m feeling low, I tend to look up. Maybe it’s because I have always loved Psalm 121: “I will lift up mine eyes to the hills: from whence shall my help come?” Maybe it’s because I just feel better when I lift my chin, open my eyes, and take a moment to think: “OK. What next?”

In this case the next step was to ask, “What would I do? What can we as a society do? What role does the internet play?”

On a personal level, if faced with the sudden hospitalization of a loved one, I would channel people like Norman Scherzer, whose survival advice is: “Get angry. Get smart. Get organized.” And I’d research the hospital on Leapfrog’s newly-revised Hospital Safety Score site.

On a systemic level, I would turn to the wisdom of clinician leaders like Paul Batalden, who has written about the quality improvement imperative, urging people to remember, “You only get a turn.” And I would turn to the work of the Robert Wood Johnson Foundation’s Aligning Forces for Quality, drawing hope from their wisdom and commitment.

On a professional level, as an internet geologist, I’d follow the path that is being forged by patients and caregivers online. How do they navigate this maze?

The internet isn’t magical. It can’t make an individual oncologist order the right protocol, but it can spread awareness that patients and their families should ask the questions that even Dr. Welch hesitated to ask. The internet can’t provide a transition plan for an individual, but it can provide middle-of-the-night answers or access to a community who can help. And it can be a way to organize a movement that demands quality improvement.

Please read both essays and then post your own thoughts and questions. I’d love to hear what other people do in the face of stories like this. From whence shall our help come?

Featured image: View from the Knob, in Kentucky, by Tom Gill on Flickr

My original post appeared on the Society for Participatory Medicine blog where a spirited, meaningful conversation ensued in the comments.