What the Kalanithi legacy teaches us about tailored patient care

Opinion by Alizeh Ahmad
May 23, 2017, 2:08 a.m.

Since its publication last January, When Breath Becomes Air by Paul Kalanithi has earned ubiquitous acclaim, a Pulitzer Prize nomination and a place on just about every avid reader’s bookshelf — and rightly so.

Paul Kalanithi’s writing has raw beauty and a disarming honesty. A tribute to living through the paradigm-altering lens of death, his book demonstrates more courage than many of us could dream to muster. And yet, in his journey laid bare he shows us how to be an ideal physician, an ideal patient and even an ideal appreciator of the vulnerability of the human condition.

His lessons live on. Lucy Kalanithi, a physician at Stanford and Kalanithi’s widow, spoke movingly at a TEDMED conference last November. You can watch the talk here.

The end of her talk resonates soundly with those currently working in or aspiring to work in health care, particularly in end-of-life care. She highlighted her appreciation for her husband’s oncologist, who built his treatment plan around what Paul Kalanithi valued and how he wished to use his remaining months, allowing him to continue neurosurgery for some time before shifting gears to writing and spending time with his baby daughter. “She knew that living means more than just staying alive,” she said of the oncologist.

Ultimately, she underscored an important but oft-neglected point, that health care ought to be tailored to the values and preferences of the patient, and that it is vital for patients to thoroughly understand their right to choose whether to undergo certain treatments and how to go about them without feeling unduly swayed. She cited examples like dialysis in the home instead of a clinic, or the choice of a pregnant woman to either partake in or forgo genetic testing.

The Kalanithi family is selfless to share with the world a hard-earned wisdom forged by the pain of loss and an intimate understanding of one’s own mortality. Lucy Kalanithi’s talk translated many of the lessons of the Kalanithi legacy to better inform patient care and not only treat, but heal. Patient advocates, families and health care providers would be wise to do that legacy justice.   

 

Contact Alizeh Ahmad at alizeha ‘at’ stanford.edu.

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