Rage Against the Dying of the Light

by Sean Philpott, Director of the Center for Bioethics and Clinical Leadership

Until last week, most people had never heard of Lisa Bonchek Adams. A devoted wife and mother to three young children, Ms. Adams has been battling end-stage cancer for the last seven years.  This 44-year-old Connecticut woman has chosen to fight her disease tooth and nail, including enrolling in a clinical trial at Memorial Sloan Kettering Hospital in New York City.

For the last couple of years, Ms. Adams has been blogging and tweeting about her fight against the disease.  As of last night, her Twitter feed had over 12,000 followers, the majority of whom ardently support her.

Lisa is not the first person to write publicly about her fight with illness. In fact, people have been doing so for centuries, originally through print memoirs but increasingly through blogs and social media websites like Facebook and Twitter.

For many, doing so provides some level of comfort, helps them find the courage they need to make difficult treatment decisions, and gives them the chance to help others facing similar life-threatening challenges.

So what makes Ms. Adams and her public struggle with cancer so unique? Why am I, as an overworked and underpaid professor of bioethics, now following her story so closely? The reason is that she recently came under attack by two well-known journalists:  Emma Keller, a lifestyle columnist for the Guardian (a British newspaper), and her husband Bill Keller, former executive editor of the New York Times.

In an article that has since been pulled from the Guardian’s website, Ms. Keller questioned Lisa’s decision to publicly document her fight against cancer. Perhaps it was the sheer volume of tweets that disturbed Ms. Keller; since opening her Twitter account, Lisa has posted over 165,000 tweets about her clinical experiences. But whatever the reason, Ms. Keller elected to write a scathing piece about Lisa.

Ms. Adams’s alleged crime is that of TMI – providing ‘too much information’ about her struggle against a life-threatening illness. For example, Ms. Keller wrote that Lisa’s frequent tweets are the “grim equivalent of deathbed selfies, one step further than funeral selfies”. At least according to this London-based lifestyle writer, documenting your fight against cancer is on par with the disturbing trend in which teenagers (and occasionally world leaders) take photos of themselves at memorial services for dead relatives and friends.

Shortly thereafter, Ms. Keller’s husband Bill penned a similar op-ed piece that appeared in the New York Times. In it, he contrasts Lisa Adams’s decision to viciously (and publicly) fight her disease with his elderly father-in-law’s choice to refuse aggressive treatment in favor of palliative care and a peaceful and largely pain-free death. In doing so, he described his father-in-law’s passing as “a humane and honorable alternative to the frantic medical trench warfare that often makes an expensive misery of death in America.”

The insinuation, it seems, is Lisa Adams’s refusal to die without a fight is somehow undignified. Moreover, that her decision to explore novel treatment options, including enrolling a clinical trial, not only gives false hope to those in similar situations but also denigrates the memory of those who chose not to pursue a similarly aggressive approach.

Now I myself have frequently written about the high cost of medical treatment, particularly at the end of life. I am also a fervent advocate of hospice and of palliative care for those suffering from terminal illnesses. That does not mean that I agree with the Kellers. In fact, I don’t.

As Americans, we do need to starting talking more openly about death and dying. As individuals, we need to have the difficult conversation with our friends and family about end-of-life treatment and care. As a society, we need to think about what a so-called ‘good death’ looks like and make sure that we have policies in place — at the institutional, local and national level — to ensure that everyone who dies does so well.

That Lisa Adams has decided to fight her illness rather than succumb is her prerogative, and she draws comfort and support from sharing her experience with others. Some, such as Bill Keller’s father-in-law, chose a different and less public path. Their choice is equally courageous and they no doubt drew comfort and support in other, more private ways.

The Welsh poet Dylan Thomas once wrote: ” Do not go gentle into that good night / Rage, rage against the dying of the light.” No truer words have been written. Lisa Adams expresses her rage publicly, by documenting her fight against cancer and providing encouragement for others who chose a similar path. But some people choose to do so privately, by spending time with family and friends and building long lasting memories that will survive even after they are gone.

What the Kellers fail to appreciate is that every death is different. Everyone has an opinion of what a ‘good death’ is, and that opinion should be respected and honored. So long as that is achieved, there is no right or wrong way to die.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on January 16, 2014. It is also available on the WAMC website. Its contents are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

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