IN THE FILM THE Farewell, Chinese-American actress and comedian Awkwafina plays a woman torn between two
cultural approaches to death and dying when her character, Billi, learns that her grandmother has terminal lung cancer. Billi's grief is compounded when she learns that her family does not intend to tell her grandmother Nai Nai about
the diagnosis—a common practice in China, where frank discussions about death are still taboo.
The film is based on a true story from director Lulu Wang’s own experience, which she described on episode 585
of the NPR program This American Life. Like Billi, Wang moved with her parents to the United States from China as
a young child and grew to embrace the American healthcare norm of giving patients complete information about
their medical condition. In the film, Nai Nai’s doctors perpetuate the cycle of misinformation, telling her that she’s
suffering the effects of pneumonia, while sharing the true information with her family members. In one scene, Nai
Nai’s extended family races to intercept the release of a damning CT scan report and convinces the radiologist to
change mentions of “malignant tumors” to “benign shadows.”
Billi and other more Westernized family members in the movie acknowledge that what they’re asking doctors to
do would be illegal in the US, which further advances Billi’s perception that she’s complicit in deception. Indeed,
HIPAA’s right to access clause would require that Nai Nai be the only one to read her test results unless otherwise
designated—and no ethical physician would knowingly change his or her diagnosis at a family member’s request.
Access to one’s own medical information and the empowerment that comes with that was one of the driving fac-
tors behind HIPAA’s creation and is one of the cornerstones of the HIM profession. Yet, as recent analyses on this
part of the law have revealed, providers still struggle with right of access compliance.
The Farewell smartly avoids judgment about which response to death is morally right or wrong. Instead, it emphasizes the different ways love is expressed and how that transcends borders and culture. ¢
‘The Farewell’ Offers Insights
into HIPAA’s Right to Access
By Mary Butler