Photo Friday: Always return to the patient experience to undertand what is needed

This week’s photograph is a pair of images from the Health Affairs Briefing in Washington, DC yesterday, entitled “Fact Versus Fiction: Key Issues in Health Reform” (link to twitterfeed is here, note this may not resolve in 7 days, so try to search on hashtag #haforumdc).

Patient Elaine G - Business as Usual in Health Care Today Patient Judy F - Received coordinated palliative care and cancer care
The images depict the stories of two patients, cared for Diane Meier, MD. On the left is a depiction of “Elaine G”, who was treated using standard (aggressive) care almost to the end of her battle with dementia and recurrent pneumonia. On the right is an image of “Judy F” who also lost her battle with metastatic lung cancer after 6 years. Judy was given a prognosis of 6 months at diagnosis, and engaged in concurrent palliative care and cancer care. Here is an image of Judy F in her last 3 weeks of life, when she officially entered hospice:
Patient Judy F - Last 3 Weeks of Life
The images are both horrific, moving, and clarifying of what it is we think we want out of our health care system for our friends, family, and community.
This presentation was followed by one given by Jerald Winakur, MD, who recounted the story of his father’s decline and passing, also published in this Health Affairs article, What Are We Going to With Dad?
In the article, there’s a quote about Winakur’s father’s experience in the hospital:

Each day my father descended deeper and deeper into paranoid confusion. He couldn’t rest, he was intermittently unsure of who I was. At first I could calm him with my voice, talking about the old days, reminding him of our fishing trips on the Chesapeake Bay when I was young. Then he needed the physical reassurance of my hand on his arm or shoulder at all times. Finally, so that he could get some rest, I got in the bed with him and held him, comforting him as he once—in a long-ago life—did for me.

As we try to figure out what we think is right for patients, we should know that our patients will tell us what is right for patients.

Thanks again to Susan Dentzer and the team at Health Affairs tor including this perspective in yesterday’s forum.

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