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On the first day of Medicine X, talking disparities, adversity and hope

From the moment I walked through the door this morning, it was clear that Stanford's Medicine X is not your typical medical conference. Colored lighting gives the conference room a dramatic feel, and guided meditation started off the day. There are barista-crafted pick-me-ups and a wellness room for naps. And in line with the mission to reimagine health care, speakers on the first panel -- who followed a warm welcome from conference director/Stanford anesthesiologist Larry Chu, MD -- delivered the message that humanity and compassion need to reclaim center stage.

Lieutenant Colonel Downing Lu, MD, and U.S. Navy Rear Admiral David Lane, MD of the National Capital Region Medical Directorate, took the stage first and explained how the Military Health System (MHS) has successfully treated a diverse population and worked to mitigate health disparities.

Within the military, they told attendees, everyone is guaranteed health care and a living wage. The military offers subsidized housing and food, and personnel receive 12 weeks paid maternity leave and subsidized childcare, the doctors explained, prompting a round of applause from the audience. These provisions have contributed to essentially erasing racial health disparities within the MHS, and patient satisfaction is equal across genders, they reported. The 50,000 babies delivered within the MHS are more likely to be breastfed (link to .pdf) than those in civilian populations, and white mothers are not significantly more likely to breastfeed than mothers of color, Lu and Lane said. The MHS is now focused on improving its care for transgender individuals and on reducing rank-based disparities that correlate roughly to socioeconomic status, they told attendees.

Next, Lucy Kalanithi, MD, an internist at Stanford and widow of Stanford neurosurgeon-author Paul Kalanithi, MD, delivered a stunning address on the humanity of suffering, and ultimately, the humanity of death. The Kalanithis' story is told in Paul's best-selling memoir When Breath Becomes Air, and Lucy's rendition made the audience fall in love with them both in just a few minutes. She explained that Paul fell in love with her when he saw her cry when she saw a patient's ECG reading "go flat," and she was hooked because he stayed late to talk to his patients. She told us that Paul kept a gorilla suit in his trunk, "just for emergencies," and that when he developed terminal cancer, they both had to reexamine success, love, and living. "Taking care of Paul was the best and worst thing I've ever done," she said.

Kalanithi shared that she and her husband learned that talking about the painful, hard things is the route to healing. With brutal honesty, Paul told her he wanted her to remarry, and he made clear how he wanted to die. (Lucy compared an advanced directive to a marriage vow — an act of love, a promise to care for someone and honor their wishes.) Such truth-telling is badly needed from health-care professionals, Lucy said, stating that a majority of doctors give patients a too-rosy prognosis, and that many patients feel they received excessive, unwanted care. Providers may think people want a particular kind of hope, but what really helps is honesty, she said.

By sitting with the wholly human reality of death, Kalanithi explained, doctors can help families grieve, cope, and make hard choices with their eyes and hearts open. Choices like having a child. After his diagnosis, Lucy asked Paul, "Wouldn't saying goodbye to a child make dying more painful?" He replied, "Wouldn't it be great if it did?" Living fully means accepting suffering, they realized; their daughter Cady is now two.

Kalanithi's moving account would normally be hard to follow, but Eric Amador was a great choice for this tough assignment. Amador, an e-patient and a retired Navy chef who did two tours in the Persian Gulf, showed a film that discussed his experience with ALS  and shared how he's been fighting for a more compassionate health-care system while fighting the progression of the neurodegenerative disease. His diagnosis was delivered bluntly, with no information or services, merely the offer of a chaplain visit. He and his wife, Toni Amador, a nurse who joined Eric onstage, spoke about the importance of compassion, reassurance, and information in making a plan with patients and their families.

Often illness is compared to a battle. But when health care succeeds, that battle can give way to acceptance, which Amador said led him out of depression and despair into hope. Kalanithi spoke out against the battle metaphor, saying death is not a war (at least not one we can win). Caregivers are not soldiers, but shepherds. A care team has a tough job — and it's not to fix things, not to save lives, but to make lives worth living.

Both Kalanithi and Amador received standing ovations.

Previously: Medicine X, the academic conference where "everyone is included," returns and When Breath Becomes Air: A conversation with Lucy Kalanithi
Photo of Lucy Kalanithi courtesy of Stanford Medicine X

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