A New York Times editor and his wife's obsession with one cancer patient's fight for survival.
Lisa Bonchek Adams is a 43-year-old woman with three children and Stage IV metastatic breast cancer. In the seven years since she was first diagnosed, Adams has dedicated an enormous amount of time and energy to chronicling her battle with the disease, via hundreds of thousands of tweets and a blog. In two columns that offer great insight into the progressive mindset, former New York Times executive editor Bill Keller, and his wife, Emma Gilbey Keller, have taken Adams to task for having the audacity to prolong her own life, and publicly write about her efforts to do so. As far as these two are concerned, Adams isn't dying quickly enough, or privately enough, to suit their sensibilities.
In a column titled "Heroic Measures," Bill Keller acknowledges that Adams has an audience of several thousand who are caught up in her "unsparing narrative of mastectomy, chemotherapy, radiation, biopsies and scans, pumps and drains and catheters, grueling drug trials and grim side effects, along with her posts on how to tell the children, potshots at the breast cancer lobby, poetry and resolute calls to 'persevere.'” Bill further notes that lately, due to the fact that the cancer has "colonized" just about every part of Adams' body with the exception of her brain, "her optimism has become a little less unassailable."
One might be tempted to wonder what purpose might be served by any criticism of any cancer patient's optimism, but Keller is more than up to the task:
In October 2012 I wrote about my father-in-law’s death from cancer in a British hospital. There, more routinely than in the United States, patients are offered the option of being unplugged from everything except pain killers and allowed to slip peacefully from life. His death seemed to me a humane and honorable alternative to the frantic medical trench warfare that often makes an expensive misery of death in America.
Among doctors here, there is a growing appreciation of palliative care that favors the quality of the remaining life rather than endless "heroic measures" that may or may not prolong life but assure the final days are clamorous, tense and painful. (And they often leave survivors bankrupt.) 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.
Keller's father-in-law was 79 years old when he died and he chose to do so. Since he was dying in Britain, he was put on the Liverpool Pathway, a procedure designed to provide dying patients with hospice-like care in a hospital setting. That would be the same Liverpool Pathway condemned by government ministers as a "national disgrace" following an investigation that revealed patients were the victims of "tick box" treatment further characterized as "uncaring, rushed and ignorant."
An extensive investigation by the Daily Mail uncovered the motives behind the plan, noting that cash incentives were provided to hospitals to hit target numbers for patients on the Pathway. As a result patients on the pathway endured "poor care, appalling communications and ... a lack of attention or compassion," and, as the inquiry revealed, "heartbreaking accounts of people desperately sucking at sponges used to moisten their mouths."
Nonetheless, the "trench warfare" in which Lisa Bonchek Adams is engaged, much of which is dedicated to spending as much with her children as possible, irritates Keller. He notes that when he was first introduced to Adams' blog, "my first thought was of my father-in-law’s calm death. Lisa Adams’s choice is in a sense the opposite," he contends. Yet he gratuitously concedes that her decision to "treat her terminal disease as a military campaign has worked for her," and that her "defiance has also been good for Memorial Sloan-Kettering," because she has been willing to be a research subject, a category of patients whose numbers are in short supply.
Keller still considers such efforts a bridge too far. "Her digital presence is no doubt a comfort to many of her followers," he writes. "On the other hand, as cancer experts I consulted pointed out, Adams is the standard-bearer for an approach to cancer that honors the warrior, that may raise false hopes, and that, implicitly, seems to peg patients like my father-in-law as failures."
Without citing a single example of anyone who characterized his father-in-law's decision as a failure, Keller enlists the support of Steven Goodman, an associate dean of the Stanford University School of Medicine to buttress his contention. Goodman makes the same generalization, contending that Adams' blog shouldn't be "unduly praised. Equal praise is due to those who accept an inevitable fate with grace and courage.”
As insensitive as this effort is, Keller's wife Emma more than matches it. In a column titled "Forget funeral selfies. What are the ethics of tweeting a terminal illness?" Emma notes her ongoing fascination with Adams, especially as her condition declined. "I couldn't stop reading – I even set up a dedicated @adamslisa column in Tweetdeck – but 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 selfless? Why am I so obsessed?"
Perhaps Emma Keller would be better served by addressing a level of self-absorption so profound that she wonders aloud whether Adams should have some sort of restriction placed on her narrative, lest "too much information" upset Keller's seemingly delicate sensibilities. Yet even as she wonders, she manages to criticized Adams for not providing enough information. "She'll tell you all about her pain, for example, but precious little about her children or husband and what they are going through," writes Keller. "She describes a fantastic set up at Sloan-Kettering, where she can order what she wants to eat at any time of day or night and get as much pain medication as she needs from a dedicated and compassionate 'team', but there is no mention of the cost."
Emma Keller's column was removed from the Guardian website "pending investigation." It seems that the woman who was concerned that Adams was sharing "TMI," quoted an exchange of direct messages with Adams absent her knowledge or permission. Doing so is a violation of journalistic ethics.
The best criticism of Bill Keller's column was provided by Adams herself. “The main thing is that I am alive. Do not write me off and make statements about how my life ends TIL IT DOES, SIR,” she tweeted.
The Atlantic columnist Megan Garber takes on Emma Keller, noting that "there is a nicely efficient way to quash her own anxieties about Adams's tweets: Stop receiving them. Unfollow Adams. Mute her. Excise and/or exorcise her story. Problem, such as it is, solved."
She then explains why that would be unlikely. "To ignore Adams would be to foreclose the possibility of extruding her experience into pliable column material—and to reject the casual entitlement that converts lived suffering into moral questioning," she explains. Garber further notes how both Bill's and Emma's efforts are aimed at taking Adams' personal experience and extrapolating it into a "broader, more succulent truth."
She takes them forcefully to task for that effort. "Adams herself makes no claim to universality, or to ethical authority, or to any kind of symbolism about The Way We Live Now," writes Garber. "It is the journalists—hungry for new insights, thirsty for new trends—who are saddling her with the freight of moral implication and then judging her for the audacity they infer. It is a remarkable trick. It is also a cruel one."
There is little doubt that the Kellers are guilty as charged. But Garber misses the bigger point. Even as both Kellers frame their concerns in different ways, the one constant in both columns is the authors' concerns with the costs of keeping Adams alive. Or more to the point, the costs of keeping people alive in general, something Bill likens to a war of attrition that assures one's final days are "clamorous, tense and painful. (And they often leave survivors bankrupt.)" His wife seems more concerned that cost of Adams treatment remains a secret, likely due to the reality that the "fantastic treatment" Adams is getting is unavailable to a majority of Americans.
It is precisely this kind of radical egalitarianism that forms the heart of ObamaCare. Millions of people have had their "inferior" insurance policies cancelled because they did not conform to the ten essential elements the new law requires every policy to have. It doesn't matter men don’t need maternity care, or that older Americans no longer require coverage for pediatric dentistry. The needs of the individual, be they access to particular doctors, hospitals, or insurance policies, must give way to the interests of society as a whole. If we have to "break a few eggs to make an omelet," much like the case of the Davert family, who can no longer find or afford insurance for their two disabled children, then so be it. The greater good must be served, even if it means dying with the kind of dignity that is defined by a third party.
As Bill Keller notes in his earlier column about his father-in-law, there are political difficulties with such a proposition, but he sees a way around them simply by re-framing the argument. "But the case for a less excruciating death can stand on a more neutral, less disturbing foundation, namely that it is simply a kinder way of death." Keller omits the essential question: kinder according to whom?
Few Americans these days take issue with the idea that people should be allowed to die with dignity if they close to do so. Yet as the Liverpool Pathway scandal has shown, such euphemisms can become extremely flexible -- especially when such flexibility is tied to cash incentives. "In America, nothing happens without a cost-benefit analysis," writes Bill Keller. That is exactly the future ObamaCare, replete with its Independent Payment Advisory Board, portends.
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