The fierce fight over how to die

By Anne Taylor Fleming
January 15, 2014

There has been an ugly and sad pile-on by two people who ought to know better and a young woman fighting against cancer. It started — as these things can — in the blogosphere, where Lisa Bonchek Adams, mother of three and terminal cancer patient, has been chronicling her battles in sometimes raw detail.

Her tweets are full of pain, literal and emotional. Apparently, her revelations have proved too much for journalists Emma Gilbey Keller and Bill Keller. In a post on theguardian.com, Ms. Keller suggested that Adams has gone over the line.

“Should there be boundaries in this kind of experience?” Keller wrote. “Is there such a thing as TMI? Are her tweets a grim equivalent of deathbed selfies?”

For starters — before we get to the heart of the thing — do you really want to be hip and clever by tossing around the word “selfie” when talking about someone dying? Death, after all, can be pretty personal.

Then her husband, Bill Keller, former executive editor of the New York Times, weighed in on the Op-Ed page of his paper, perhaps coming to his wife’s defense. He contrasts Adams’ adamant and self-revelatory fight with his father-in-law’s calm death from cancer in a British hospital.” That, said Keller, was a “humane and honorable alternative to the frantic medical trench warfare that often makes an expensive misery of death in America.”

Emma Keller may sound a bit mean-spirited. Her husband’s remarks, more sober and big picture, are aiming at something larger, however. He is examining one of today’s hot topics: How to Die.

Everywhere you turn now, dying is getting big play. No doubt because we noisy boomers are aging. We are burying our parents and our spouses and our friends — reckoning with the processes and the losses.

There are good books being written, like Katy Butler’s Knocking on Heaven’s Door and even TV reality series like Showtime’s Times of Death. I read the former but couldn’t take too much of the latter. This is tough stuff, not to be made light of by cutesy references to selfies.

At least Bill Keller is trying to raise those legitimate questions everyone seems to be asking now. The problem is he is doing it over Adams’ failing body. He’s got the wrong person, the wrong patient.

Keller’s father-in-law was 79 when he died, almost a lifetime older than Adams, who is in her 40s. If you are in the middle of life, with young kids, fighting like a tiger to stay around for a few more years — to see a graduation from middle school or a prom dress — makes a damn lot more sense than if you are in your later years. I would do it in a heartbeat; would have done it.

Not to see this and make a major distinction is a failure of imagination. Adams is not an old woman. She is flailing against the injustice of a premature death.

There is also an underlying prissiness in the Kellers’ approach, a kind of preference for a stiff-upper-lip approach to death. Call it more British, if you wish. Let’s keep the emotional water level down. Let’s not let it all hang out.

But attending someone who is dying is not about keeping the emotional water level down. That is hard to do when you hold someone who is nauseated from chemo; or change a diaper on a once-robust-now-frail mother; or bandage a husband who has taken a fall and cracked his head open, spilling blood everywhere, because of the Coumadin he is taking.

Because it is messy and heartbreaking, this ending business — if you are present, truly present. It can even be messy and heartbreaking and painful if the patient is in hospice care, the increasingly promoted gentler way of dying. Leaving the earth can still be fierce — for the patient and for those who love him or her — even without the expensive, life-prolonging interventions.

We all have to be careful not to imply there is a right way to die. I have learned, watching the three people I have recently lost — my mother, my husband and my best friend since high school — that people should get to choose how hard they want to fight and when they want to go.

To question a young woman grasping at life-prolonging interventions is simply cruel. I have a close friend, Dikla Benzeevi, who is, like Adams, a Stage IV breast cancer survivor. She knocks me out and makes me feel small. I met her some years ago, when she was just finishing her first round of chemo. She was in her 30s and had never been in love. Kids, whom she had longed for, were now out of the question. A year later, the cancer came roaring back and she has been fighting the beast ever since: spine surgeries and endless rounds of chemo and those nasty pills that suppress your hormones so you are dry and scratchy all through your being, from skin to soul (so sex with the boyfriend you always longed for and finally got can be difficult; is this TMI for Emma Keller?).

Like Adams, Benzeevi has gone public, starting support groups and turning herself into an international spokeswoman for young women with breast cancer. Death is always close. Of the 10 women in one of her support groups, Benzeevi is the only one left. Like Adams, she will keep raising her voice until she can’t.

Even for those who are older, the choices about how to die, about how hard to fight, about when to give up, are intensely personal. I don’t think any of us know how we will react when that times comes — the Kellers included. They might have a moral and personal leaning toward going in a decorous, uncontested fashion, but I just don’t think that is assured.

Along with Benzeevi, three other people I am close to are now engaged in major cancer battles. I am rooting for them with everything in me. Some are more public about their battles than others. Fine; that’s a choice, too.

Obviously, if someone becomes incapacitated and the medical wizards plow on doing their life-saving thing, there are issues — as Butler’s book makes beautifully and painfully clear. Obviously we all need to talk more about advanced directives and hospice and all that.

In fact, we are talking about it. People like Adams are helping advance the conversation in its rawest, saddest form. We owe her a thank you, not a clever, rhetorical slap on the wrist.

And the Kellers owe her an apology.

 

ILLUSTRATION (TOP): Matt Mahurin

PHOTO (INSERT 1): Sample analysis tubes are seen in a lab at the Institute of Cancer Research in Sutton, July 15, 2013. REUTERS/Stefan Wermuth

PHOTO (INSERT 2): A patient receives chemotherapy treatment for breast cancer at the Antoine-Lacassagne Cancer Center in Nice July 26, 2012. REUTERS/Eric Gaillard


3 comments

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Thank you, Anne Taylor Fleming, for your intelligent and compassionate commentary. Ms. Keller’s column was horrifying and narcissistic. Her husband’s defense made it worse. So sad that they thought it was acceptable to exploit someone’s suffering.

Posted by megzweiback | Report as abusive

Thanks Anne. Perhaps the Keller’s unfortunate, uneducated journalism will pave the wave for change on how cancer is depicted in future articles by all journalists. Perhaps journalists will now take the time to really research metastatic breast cancer before writing anything on it. So, in that sense…it has been a good wake up call. When Angelina came forward with her op ed piece last year, I found most journalists completely uneducated about BRCA gene mutations and the feelings/decisions accompanying cancer risk. As a BRCA Health advocate and BRCA1 gene mutation carrier I work hard daily by tweeting, posting, etc. to try to show what means and how it feels to have a gene mutation. Lisa, on her platform, is educating daily by showing what Stage 4 metastatic cancer looks like and feels like. It is important for all of us who have voices to use them so that judgement and insensitivity can wither away and education can happen. This is why the two pieces by the Keller’s mystify me even more. It seems to have brought out judgement and insensitivity in both of them.

It is an obligation of journalists/reporters to get the story right–do the research, interview the experts. I would say this would be even more important when writing about a patient with cancer- which is highly patient specific. When writing about someone with cancer …it also seems an ethical must for journalists to take a step back and ask themselves, is doing this or saying this in any way insensitive to the person I am writing about? It is clear that the Keller’s did none of the above. The articles say way more about the Kellers than Lisa Adams.

Amy Byer Shainman
BRCA Health Advocate
The BRCA Responder
http://thebrcaresponder.blogspot.com

Posted by FloridaForce | Report as abusive

Make sure you have a living will, a definite order to doctors and hospitals, a medical power of attorney signed and witnessed so there is no confusion if you are terminally ill. Yes, dying is a “personal” thing – if you don’t want to read a terminally ill patient’s record of the daily struggle, don’t read it! Others may get some benefit from the record and that is their choice and choice is another “personal” thing.

Posted by AZreb | Report as abusive