Hot Topics: End of Life Care
by Craig Klugman, Ph.D.Full Article
by Suzanne van de Vathorst
In 2018, 6126 cases of physician aid in dying (PAD) (4.4% of all deaths) were reported in the Netherlands.…Full Article
“Based on an Actual Lie”—thus begins The Farewell, a film that follows 30-year-old Billi from her New York City home to Changchun, China, where she and her family visit her dying grandmother Nai-Nai. Billi’s family arrives in Changchun under the guise of a wedding celebration for Nai-Nai’s grandson, but they have really come together to all be with Nai-Nai before she dies of stage IV lunch cancer. The ‘actual lie’ on which the story is based concerns the withholding of grim health information from the family’s matriarch; but this very substantial lie coexists with myriad other well-intentioned lies that various family members tell one another throughout the movie.
The Farewell is a good reminder that disease often affects an entire network, and that medical ethics is, much to the chagrin of many analytic philosophers, embedded in a highly complex web of cultural and sociological forces. Billi’s father admits to Billi that their strategy of lying to Nai-Nai about her condition wouldn’t fly in the United States; yet the viewer discovers, along with Billi, that norms in China dictate against medical honesty when that honesty brings with it bad news.
This cultural clash is most stark when we witness the bilingual Billi speak to Nai-Nai’s doctor in English right in front of Nai-Nai, who speaks only Mandarin. Billi interrogates the physician about whether lying to Nai-Nai is the right thing to do, and he affirms that Nai-Nai has advanced lung cancer and reassures Billi that “it’s a good lie.” Here, the truth is right in front of Nai-Nai, but just out of reach.
The central tension of the film concerns the interplay between informational disclosure, harm, and autonomy. Nai-Nai’s family is deeply concerned about the harm that disclosure of her disease status would cause, and this concern appears to be the main driver of their decision to withhold information. But I have to wonder whether there are other factors in play—e.g. avoidance or denial—that are also contributing to their decision. And in focusing so much on harm, the family ignores Nai-Nai’s autonomy—and with it, her vibrant, hilarious personality—as worthy of consideration and respect. When, if ever, does information cause the type of harm that the bioethical principle of nonmaleficence dictates against? And when, if ever, does this type of harm justify a disregard for autonomy? These are hard questions to answer.
In the film’s coda, we learn that Nai-Nai is still alive six years later. As a viewer, I was not sure how to take this information: is it evidence that Nai-Nai’s family did the right thing by lying to her, therefore giving Nai-Nai the opportunity to live six more years in blissful ignorance? Or does her unexpected longevity make the lie all the more nefarious, since it robbed Nai-Nai of the chance to view each one of those nearly 2200 days as an especially precious gift?
The most likely answer is that it depends—it depends on what Nai-Nai herself would have wanted. And with the exception of Billi, Nai-Nai’s family members do not give this question any thought when deciding on what they think is best for Nai-Nai. We do learn that Nai-Nai lied to her late husband when he was terminally ill, which Nai-Nai’s children seem to think justifies their doing the same to Nai-Nai. But we also witness the sting of humiliation when Nai-Nai learns that her husband lied to her for years about his smoking habit. We see throughout the film, from several different angles, how we often don’t really know the people whom we believe we know best of all.
As for me? Well, I’d want to be told the truth. But I’d also want the opportunity to leave that truth by the wayside, should I deem it too much of a nuisance, and walk away no worse for the wear. If only that were a real possibility—for Nai-Nai, for Nai-Nai’s family, and for the rest of us.
This post is presented in collaboration with the American Journal of Bioethics.
You can read the entire issue by clicking here.…
This post is presented in collaboration with the American Journal of Bioethics. You can read the entire issue by clicking here.…Full Article
by Craig Klugman, Ph.D.
In the 2011 film, In Time, people are implanted with a digital clock that tells them how long they will live.…Full Article
by Craig Klugman, Ph.D.
The film, “The Farewell” claims to be a movie “based on an actual lie”. Billi is a first generation Chinese-American twenty-something artist living in New York near her parents.…Full Article
by Craig Klugman, Ph.D.
One of the cornerstones of modern bioethics, at least in the area of death and dying, is the notion of autonomy, that people are able to make decisions about medical care at the end of life.…Full Article
by Craig Klugman, Ph.D.
Max Goodwin is at home resting from his chemotherapy after stepping down temporarily from his medical director position.…Full Article
Reweighing the Ethical Tradeoffs in the Involuntary Hospitalization of Suicidal Patients
Physician Aid-in-Dying and Suicide Prevention in Psychiatry: A Moral Crisis?
Medical Aid-in-Dying is an Ethical and Important End-of-Life Care Option
Parity Arguments for ‘Physician Aid-in-Dying’ (PAD) for Psychiatric Disorders: Their Structure and Limits
Concerning the Basic Idea that the Wish to End Suffering Legitimates Physician Aid in Dying for Psychiatric Patients
Assessing Patient Perspectives on Receiving Bad News: A Survey of 1337 Patients With Life-Changing Diagnoses
Withholding and Withdrawing Life-Sustaining Treatment: Ethically Equivalent?
Nancy Cruzan and the Withhold Versus Withdraw Dilemma
Ethical understandings of proxy decision making for research involving adults lacking capacity: A systematic review (framework synthesis) of empirical research
Darryl Young suffered brain damage during a heart transplant at Newark Beth Israel and never woke up. But, hardly consulting his family, doctors kept him alive for a year to avoid federal scrutiny.Full Article
Few want to think about their own deaths. And forms rarely capture the complexity of real-life medical decision-making. But there are ways to tackle these and other roadblocks.
While the recent legal battle has been a source of confusion and frustration for terminally ill Californians and their physicians, the eventual fate of this law remains unresolved. Even if there are no additional attempts to invalidate the law, it will “sunset” in 2026. Without further legislative action medical aid-in-dying will disappear from California yet again.Full Article
A little more than one year has passed since John McCain was diagnosed with glioblastoma, an aggressive form of brain cancer that carries a grim prognosis. On Saturday, only one day after it was announced that the Arizona senator had decided to “discontinue medical treatment,” he passed away.Full Article
Taboo topics occupy a difficult place in the history of medicine. Society has long been reticent about confronting stigmatized conditions, forcing many patients to suffer in silence and isolation, often with poorer care… The most recent issue to face such scrutiny is physician-assisted dying (PAD).Full Article
Jahi McMath, the Oakland teen whose brain-death case captivated the world while machines kept her breathing, was finally removed from those machines on June 22 in New Jersey after suffering from internal bleeding and kidney issuesFull Article
A California judge on Tuesday threw out a 2016 state law allowing the terminally ill to end their lives, ruling it was unconstitutionally approved by the Legislature. Riverside County Superior Court Judge Daniel Ottolia said lawmakers acted illegally in passing the law during a special session devoted to other topics, said lawyers for supporters and opponents. He did not address the legal issue of whether it was proper to allow people to take their own lives, and gave the state attorney general five days to appeal.Full Article
On a rare rainy night in Albuquerque, two dozen students are learning the proper way to care for older people. Teacher Liliana Reyes is reviewing the systems of the body — circulatory, respiratory and so on — to prepare them for an upcoming exam. These students are seeking to join a workforce of about 3 million people who help older adults remain in their homes. They assist these clients with things like bathing, dressing, and taking medication on time. About a quarter of these workers are immigrants.Full Article
Former administrators admitted doling out drugs without having appropriate diagnoses, securing informed consent or divulging risks.Full Article