What Sen. McCain’s death can teach us about end of life care

In his posthumously published bestseller, “Factfulness”, author Hans Rosling warns, “There’s no room for facts when our minds are occupied by fear.” 

Before the passing of Sen. John McCain (R-Ariz.) on Saturday, he made a choice. On Friday evening — as I read the reports that he had chosen to forego aggressive treatment for his brain tumor — I was reminded of how emotions often drive the facts of a situation.

{mosads}Commentators and pundits were quick to point out that John McCain will “no longer receive treatment.” Reading many of these headlines, some readers — who are not familiar with the medical system — assumed that McCain’s caregivers are abandoning him. The danger with this is that such confusion can distort the quality of end of life care discussions physicians can have with patients and their loved ones.

As a public health researcher and a medical journalist who has written about the tremendous barriers that exist in communicating facts about end of life care, this was a disappointing development. I believe the choice made by the late Senator regarding his end of life care has an important lesson for all of us.

In choosing to forego aggressive treatment for his brain tumor, McCain decided to not pursue a path that could have been potentially painful with no guarantee of prolonging his life. While still a difficult decision, there is ample evidence to suggest this may have been the most appropriate one.

Recent research suggests that even after aggressive therapy, patients with malignant gliomas — the kind McCain was diagnosed with — usually survive less than 2 years after diagnosis. Spending this time surrounded by family might be a better option than being tied to a dozen intravenous lines.

Randomized control trials have demonstrated that early palliative care for advanced cancer is associated with improved the quality of life and greater satisfaction with care for patients, when compared with the standard cancer care. In fact, early involvement of the palliative care team has been shown to be associated with better outcomes and even improve the quality of death, as experienced by patient’s family.

The American population is aging, and requires greater emphasis on palliative care, but medical education has not caught up with these demographic changes. Medical education curricula are not prepared. In a survey that asked medical students and training residents regarding discussions on end of life care, more than forty percent said that “dying patients were not considered good teaching cases.”

Health-care providers understand these realities. In an essay penned for the Wall Street Journal, Ken Murray described how physicians prefer to forego aggressive treatments for cancer, instead opting to spend their limited time in with family and loved ones.

This is why the framing of the choices made by patients with advanced cancer – especially those with a prominent public profile – is a matter of public interest.

It is also important for palliative care specialists to get involved with media agencies and develop a framework on how to report on such news. For instance, the Department of Mental Health at World Health Organization (WHO) has partnered with International Association for Suicide Prevention (IASP) and developed a resource for media professionals to responsibly report on suicide.

Simple recommendations, such as avoiding the term “suicide” in headlines and taking a suicide event as an opportunity to educate the public, can be also be adapted for news on prominent individuals pursuing a non-traditional approach to advanced cancers.

While Senator McCain’s life exemplified loyalty and patriotism, his death taught another valuable lesson: how to face death with courage and dignity.

Junaid Nabi, MD, MPH is a physician, public health researcher, and a medical journalist. He is also a 2018 New Voices Fellow at the Aspen Institute Follow him on Twitter: @JunaidNabiMD.