Formerly, Bill Keller was the executive editor of the New York Times. Having retired from that position, he has become a columnist. In his most recent column he expressed his dismay at the way Lisa Bonchek Adams is dealing with her stage 4 metastatic breast cancer.
Adams, a 40 something mother of three young children, has been tweeting her struggle against cancer. She has made it all public. And has chosen to describe her struggle in military metaphors, as though she is fighting a war against cancer.
Perhaps because he is viscerally anti-war, perhaps because he wants to promote the virtues of the British National Health Service where cost benefit analysis would never allow the Adams approach, Keller feels obliged to reject Adams’ decisions.
Clearly, he understands that no one has any business telling a 40 something mother that she should not do everything humanly possible to extend her life. And he recognizes that her approach has worked for her:
The first thing I would say is that her decision to treat her terminal disease as a military campaign has worked for her.
For most observers, that would suffice. Keller errs when he decides to moralize about her case. Apparently, he is convinced that Adams is going to die and that there is very little that anyone can do.
In his words:
What Britain and other countries know, and my country is learning, is that every cancer need not be Verdun, a war of attrition waged regardless of the cost or the casualties. It seemed to me, and still does, that there is something enviable about going gently. One intriguing lung cancer study even suggests that patients given early palliative care instead of the most aggressive chemotherapy not only have a better quality of life, they actually live a bit longer.
Writing in the New Yorker, Megan O’Rourke responded:
It’s crucial to remember that, when faced with an individual death sentence, no one knows—not a single one of us—whether treatment is in fact the pragmatic choice. As most doctors will tell you, each metastatic or “late-stage” cancer is very different in nature. When my mother was diagnosed with cancer, in 2006, it had already spread to multiple organs; from a certain perspective, it was likely that she didn’t have long to live. But after a round of what her doctor called “industrial-strength chemo,” which made her very ill for two months, she went into a total remission for a year. During that year, I got married, she and I travelled together, and she was there for all three of her children (the youngest of whom was still in college) in ways that we are all forever grateful for. But if she’d chosen to do nothing, that would have been her right. Dignity, really, is the right to do what you want to do.
By now Keller has been widely taxed with gross insensitivity. Since the New York Times has made itself into the sensitivity police, Keller is hoist with his own petard. We have no sympathy for his plight.
Keller is correct is suggest that we are going to need to have a discussion about end-of-life care. As is well known, the medical care offered during the last few months of life costs an exorbitant amount of money. Given the extra expense that Obamacare has imposed on the health care system, its supporters are trying hard to soften up the public to the virtues of late-life palliative care… letting Granny and Gramps die quietly.
Unfortunately, the case of a 40 forth something mother who is fighting for her life is not the place to have the conversation.
We grant that palliative care for the terminally ill is a nicer way to frame the issue than “death panels” or rationing. When Keller says that it's really about the dignity of dying quietly he is using terms that feel grossly out of place when applied to Lisa Adams.
Keller attempts to draw an analogy between Adams and his own his father-in-law. When this man fell terminally ill at age 79 he chose not to fight to the bitter end. He allowed himself to die quietly in Great Britain. Unfortunately, Keller goes on to suggest that someone like Adams, who wants to continue to fight her illness, should be embarrassed for making Keller’s father-in-law look bad.
Keller’s line of reasoning, not exactly unfamiliar, suggests that you should moderate your success lest you make someone else feel like a failure.
In any event, O’Rourke has correctly explains that the two situations should not be compared:
But, as Keller barely pauses to acknowledge, such collective issues break down into millions of complex individual realities—realities that go largely ignored in his Op-Ed, which treats Adams’s personal choices as an occasion for moral legislation about the wisdom of resigning oneself to death. It is very different to be faced with late-stage cancer at seventy-nine (the age that Keller’s father-in-law, Anthony Gilbey, was when he died) than to learn at thirty-seven that you have breast cancer, as Adams did. When Gilbey chose not to pursue life-prolonging treatment, he was nearing the end of life; when Adams learned her cancer had metastasized, she was in her forties with three children at home. A debate about the rationale for extending treatment looks very different when it concerns those who have lived the bulk of their lives rather than those who are halfway through theirs.
Of course, there is much more to this than health care policy. There is something frankly obscene about reducing a young mother’s war against cancer to a public health question, to one that involves telling people to let themselves die in order to save the federal government some money.
At the very least, it's an individual decision. However strange it feels in this day and age, we should respect the decisions made by Lisa Adams and Bill Keller's father-in-law. Better that than to hand it all over to government bureaucrats.
For her part, Adams sees it differently She understands that the way she is fighting her cancer is setting an example for her children. She is showing them how to fight and how to persevere, even against insurmountable odds. She is showing them not to give up and not to give in. she is telling them that she cares so much for them that she will do everything in her power to be with them.
To some extent Keller understood this:
Lisa Adams’s choice … was to buy as much time as possible to watch her three children grow up. So she is all about heroic measures. She is constantly engaged in battlefield strategy with her medical team. There is always the prospect of another research trial to excite her hopes. She responds defiantly to any suggestion that the end is approaching.
Why then, imply that she is setting a bad example for cancer patients. Doesn't she have a responsibility toward her children, to be the best parent and to set the best example she can more important than her attitude toward socialized medicine.
If Keller did not understand this, Adams certainly did. In one of her tweets she wrote:
I want my children to be able to look at what I said and did and be proud. Never needing explanation. Take the "high road."
Keller does understand that Adams’s choice to tweet and blog about her struggle with cancer has given her “a sense of purpose” and “a measure of control.” Surely, this sets a better example for her children than surrender.
But any reader can see that Adams’s online omnipresence has given her a sense of purpose, a measure of control in a tumultuous time, and the comfort of a loyal, protective online community. Social media have become a kind of self-medication.
One might say, as both Keller and his wife have pointed out, that Adams is oversharing. She is effectively telling people a lot more than they want to know about her various treatments. Sharing with a husband is one thing; sharing with the world is quite something else.
In a column that has since been removed from the Guardian website, Emma Keller (i.e. Mrs. Bill Keller) makes the point:
…I felt embarrassed at my voyeurism. Should there be boundaries in this kind of experience? Is there such a thing as TMI? Are her tweets a grim equivalent of deathbed selfies, one step further than funeral selfies? Why am I so obsessed?
If there is a point to be made about oversharing, Emma Keller undermines it with a glib and heartless reference to “deathbed selfies.” Mrs. Keller has succeeded in being both contemptuous and contemptible in a single sentence.
If we accept that Adams is, effectively, oversharing, one feels inclined to understand it as her way of combatting the solitude that attends on suffering the treatments she is submitting to.
Moreover, ask yourself this: if a woman who has suffered a sexual assault testifies about the incident in court, is she being shameless? Evidently, she is not. While excessive exposure of private matters or private parts is universally considered to be a sign of a lack of a sense of shame, in some situations the rule gets bent. The assault victim, like Lisa Adams, is sacrificing a part of her dignity for the public good.
However much Bill Keller feels that Lisa Adams’s war against her cancer is politically incorrect, he recognizes that she is, among other things, serving a larger, public good.
Lisa Adams’s defiance has also been good for Memorial Sloan-Kettering. She has been an eager research subject, and those, I was surprised to learn, are in short supply. Scott Ramsey of the Fred Hutchinson Cancer Research Center in Seattle cited a study showing that only 3 percent of adult cancer patients who are eligible to enroll in clinical trials do so, and, he said, their reluctance has been “a huge bottleneck in cancer research.” Some 40 percent of clinical trials fail to get the minimum enrollment. Adams has been a cheerleader for cancer research in general and Memorial Sloan-Kettering in particular. In fact, she has implored followers to contribute to a research fund set up at the hospital in her name, and has raised about $50,000 so far. “We love it!” the hospital tweeted last week about the Lisa Adams phenomenon. “An important contribution to cancer patients, families, and clinicians! :)”