Last
week, Emma and Bill Keller, both writers, she for Britain’s The Guardian and he for The New York Times, wrote editorials for
their respective papers about how much detail one should divulge publicly when
dying of cancer. Ms. Keller’s op-ed was published on January 8th and
it was titled “Forget funeral selfies. What are the ethics of tweeting a
terminal illness?” She specifically
describes the blog and tweets of Lisa Bonchek Adams, a 44 year old stage 4
cancer patient who is married with 3 children and is writing an “unsparing
narrative” of her cancer treatments and journey towards death. Some excerpts
from the editorial follow:
“Adams is dying out loud”
“As her condition declined, her tweets amped up both in
frequency and intensity. I couldn't stop reading…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 selfies? Why am I so obsessed?”
“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.”
The snarky tone of this editorial generated a lot of
outraged response in The Guardian. In addition, Emma Keller has had email and
twitter communications with Lisa Bonchek Adams but did not disclose to her that
she would be using the content of those communications in an article. Because of this journalistic transgression, The Guardian withdrew her editorial from
the website. Below is an archived copy
of the piece:
Because
of the outrage and in defense of his wife’s editorial, Bill Keller penned an
op-ed in The New York Times on Monday
January 13 called “Heroic Measures”.
This editorial is not quite as critical as Emma’s but also
generated quite of lot of outrage. At
least the NYT did not remove it from their website. Here are a few points from Mr. Keller’s
editorial:
“A rapt audience of several thousand follows 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.”
“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."
“Lisa Adams’s choice is in a sense the opposite. Her aim
was to buy as much time as possible to watch her three children grow up. So she
is all about heroic measures.”
“The first thing I would say is that her decision to
treat her terminal disease as a military campaign has worked for her. Her
relationship with the hospital provides her with intensive, premium medical
care, including not just constant maintenance and aggressive treatment but such
Sloan-Kettering amenities as the Caring Canines program, in which patients get
a playful cuddle with visiting dogs.”
“In any case, I cannot imagine Lisa Adams reaching a point
where resistance gives way to acceptance. That is entirely her choice, and
deserving of our respect."
Below is a link to Bill Keller’s editorial:
I
found these two editorials quite interesting.
Aside from the controversy and publicity that this writing generated,
they raise important questions about privacy, discussion of death, whether
cancer is a battle or a disease, the cost of treatment and how hospitals might
benefit from patients who are in the public domain. Amy Bonchek Adams had to know that these two
writers were going to write about her cancer, blog and tweets because they were
both communicating with her prior to the publication of these pieces. I was uncomfortable with the tone of Emma
Keller’s editorial but not so much with Bill's attempt at clarification. I do not believe that blogging and tweeting
about cancer is “too much information (TMI)”.
If one doesn’t want to read it, they don’t have to. It’s up to the
patient to decide if she/he wants to
fight with debilitating treatments until they die or if they want to die quietly
without them. I have been impressed with
the NYT’s bringing articles to the forefront on many facets of cancer,
sometimes quite prominently. These
conversations need to be more public.
