By John D. Sutter, CNN
March 19, 2010 8:57 a.m. EDT
STORY HIGHLIGHTS
Voice-recognition technology is seeing resurgence on mobile phones
Idea that people should be able to talk to tech has been around for 30 years
But it is often talked about as a joke, not a help
Mobile applications and improvements to voice tech may change things
(CNN) -- On a recent episode of the TV show "Modern Family," a character named Mitchell gets in his car and does something that's frustratingly familiar for early adopters of technology:
He tries to operate the machine by talking to it.
"CD player: next track," he says.
"Say a command," a robotic voice responds.
"CD player: NEXT. TRACK," he says, clearly annoyed.
"Air conditioner on."
"Dammit!"
The idea that people should be able to talk to computers, and that the computers should understand what we're saying, has been coming in and out of vogue since the 1970s. The technology never really went mainstream, though, and to this day, it's often talked about as a joke.
In recent months, however -- despite the pop-culture parodies and the increasing popularity of the text message -- researchers say voice-activated technologies have entered a renaissance of sorts.
The technological resurgence is happening in part because of smartphones, those handheld devices with tiny keyboards or awkward touchscreens that some big-fingered adults would rather yell at than type on.
So why not just take those frustrations and transfer them into navigation commands and text messages?
Increasingly, that seems to be what's happening.
Mobile voice-recognition technology now allows people to send text messages to friends by talking instead of typing; to scan through transcriptions of voice mail instead of taking time to listen to them all; to tell their phones what they're looking for on the Web; and, soon, to post to Twitter from their cars by speaking, allowing drivers to keep their eyes on the road.
"It's now possible to pick up your phone and press a single button and say, 'I want the Yelp.com review of the Capital Grille in Burlington, Massachusetts. Period,' " said Vlad Sejnoha, chief speech scientist at Nuance Communications, a major producer of voice-to-text software.
Phones should know by now exactly what Web link to find, he said, and users should get a result without ever typing.
A number of phone apps, from ShoutOut to Dragon and Vlingo, now translate speech into text messages and e-mails.
Additionally, Bing and Google both have mobile applications that let people search the Web by talking.
The voice-recognition software is also getting better, too.
The longer computers listen to us talk, the better they can predict what we're going to say and understand how we say things, researchers said. Some believe that computers are getting almost as good at listening as we are.
"If you compare us to human performance, we are rapidly closing the gap," said David Nahamoo, IBM's chief technology officer for voice research.
The technology works by listening to a voice, translating it into digital data and then anticipating what sorts of sounds or words will come next. That's different from early models of voice-recognition technology, which tried to understand every sound and used huge amounts of computing power as a result, he said.
Now, it's more of a guessing game. Each voice-recognition program has a number of equations that analyze speech and use statistics to decide what noises match up to what letters.
Tech blog: The man who teaches computers to listen
Every year, the accuracy of these programs improves, said Bill Meisel, an independent consultant who has been working in the voice-recognition industry since the early 1980s.
In a recent comparison test of four programs, Meisel found that technologies that translate voice into text are roughly 80 to 90 percent accurate. That's good enough for many common functions, like transcribing voice mail, he said.
"All the systems were almost perfect with phone numbers," he said.
Still, a number of technological hurdles remain.
One, especially for voice recognition on the go, is background noise. A phone listening to a person on a bus, for example, can hear street noise and other conversations in addition to the person who is trying to give a voice command. It's difficult for voice-recognition software to differentiate between all of those noises.
New hardware may help address that issue. Google's Nexus One phone comes fitted with two microphones: one that records a voice and another that records interference noise and then subtracts it from the voice file, making it easier for the phone to determine what noise is human and what isn't.
Another problem is the fact that no two people speak alike.
Even if we're saying the same words, we tend to pronounce them different ways. And, often, even if we're asked to say the same sentence twice, we might add different inflections or sounds that can throw computers off.
It's "the whole thing of 'I say toMAYto and you say toMAHto,' " said Nahamoo, who is Iranian. "I come from a foreign country, and some of the phonetic nuances that a native person learns, I don't learn and I can't reproduce.
"They all add up essentially to make me sound different."
Over time, computers are getting better at recognizing those differences, he said, especially when an accent is fairly common. He said that is one of the major achievements of voice technology since the '70s.
To be understood by computers, it's more important to speak clearly and consistently than to have a perfectly neutral accent, he said.
Another issue: Not all phones have the computing power to handle voice recognition, said Tuong Nguyen, a principal analyst Gartner, the research firm.
"The biggest limitation that I see right now ... is processing power," he said. "It is fairly intense, so you do need a better, higher-end phone to do it. And then a lot of people speak with accents or colloquialisms or different languages or stuff like that, which provides some challenges as well.
"But overall, I'm pretty positive about the technology."
Nguyen said it's especially handy when he's driving. In that situation, typing isn't a safe alternative.
Meisel, the consultant, said voice may be the new way we interact with computers.
We're already able to "have a conversation" with the technology to some degree, he said.
Friday, March 19, 2010
Wednesday, March 17, 2010
A Fatal Diagnosis, Followed by Goodbyes
March 15, 2010, 4:07 pm
By THE NEW YORK TIMES
Jan van den Brink
In Tuesday’s Science Times, Personal Health columnist Jane Brody writes about her husband’s final days with Stage 4 lung cancer. She begins:
This is a very personal story of living gracefully with a fatal diagnosis. When I wrote “Jane Brody’s Guide to the Great Beyond,” I had no idea that I’d be putting its precepts into practice in my immediate family within a year of publication. But as I said in the book, “You never know.”
Read the full column here, “When the Only Hope Is a Peaceful Ending,” and please share your thoughts below.
Personal Health
When the Only Hope Is a Peaceful Ending
By JANE E. BRODY
Published: March 15, 2010
CloseLinkedinDiggFacebookMixxMySpaceYahoo! BuzzPermalink This is a very personal story of living gracefully with a fatal diagnosis. When I wrote “Jane Brody’s Guide to the Great Beyond,” I had no idea that I’d be putting its precepts into practice in my immediate family within a year of publication. But as I said in the book, “You never know.” You never know when your time will be up, and so it is best to prepare for the end sooner rather than later.
More Personal Health Columns
On Feb. 2, we learned that my husband of 43 years had Stage 4 lung cancer. There was no asking “Why me?” Richard knew very well why. He’d been a pack-a-day smoker for 50 years. Although he quit for good more than 15 years ago, it was far too late. After a few weeks of encroaching weakness and coughing, a PET scan showed that cancer was ravaging his body, taking up residence in both lungs (along with emphysema), in his spine, his adrenal glands and his brain. It was inoperable and incurable. He was looking at weeks or months of remaining life, maybe a year at most.
Long before this diagnosis, we had discussed and written down our wishes if either of us faced such a dismal prognosis. At nearly 77, Richard felt he had already cheated the grim reaper despite his long addiction to nicotine. He wanted nothing to do with drastic therapies that might grant him a few extra months at the expense of his comfort and his ability to do what needed doing before he died.
His choice — affirmed by the doctors we consulted — was for palliative treatments aimed at minimizing his pain and maximizing his function. As his health care proxy, I had long ago agreed to such a plan. Our sons and daughters-in-law knew him far too well to try to persuade him otherwise.
Treatment and Comfort
For his comfort and our convenience, we stayed with local doctors at our local hospital, New York Methodist, an affiliate of Weill Cornell Medical College. I was extraordinarily impressed with the intelligence and sensitivity of the doctors we saw: our primary care physician, whose specialty is geriatrics; the pulmonologist, who made the diagnosis and provided a pretty clear picture of what was ahead; an oncologist, who strongly recommended palliative radiation (which could, if Richard wanted it, be followed by gentle chemotherapy); a radiation oncologist, who explained how radiation could help control pain; and a neurologist, who periodically assessed his physical limitations.
We were warned of two potentially disastrous complications. Richard was already suffering from severe sciatica attributed to the spinal tumors, and we learned that these could cause permanent paralysis if they impinged on the spinal cord. The brain lesions could bleed and cause a hemorrhagic stroke. And his balance, which we realized in hindsight had been declining for months, was also at great risk from lesions in the pons, near the top of the brainstem.
And so he began three weeks of radiation to his lower spine and whole brain. For a week, though the city was blanketed by snow and his balance was iffy, he was able to walk himself with a cane to and from the hospital for treatments. But 10 days from the start of radiation, he awoke unable to walk, and the oncologist said he had to get to the hospital without delay.
The paramedics who responded to the 911 call were amazingly gentle and reassuring. A magnetic resonance imaging test of the spine and brain revealed no tumor to explain this handicap, prompting a probable diagnosis of swelling caused by the cancer, the radiation or both.
And so began a two-week hospital stay marked by increasing pain (and increasing doses of narcotics to control it), extreme weakness and constipation caused by the narcotics. Richard thought there was no point in continuing treatment; he’d never get any better or leave the hospital alive. His doctors thought otherwise and urged him to continue the radiation, along with medications to counter the swelling and constipation.
My goal, my hope, was that he would live just three more weeks and be well enough on March 26 to attend a musical celebration of his life’s work as a lyricist, at which friends and family from far and wide could say goodbye.
On the sixth morning of his hospitalization, his bowel congestion finally relieved, he awoke pain-free and cheerful and announced, half joking, “Today, I almost feel like living.” I began to breathe normally again, no small thanks to the capable and conscientious oncology nurses and nurse technicians, whose cheerful demeanor seemed able to inspire a will to live in a corpse.
A Final Journey
But this was to be only a brief reprieve. After two weeks of radiation, it became obvious that the treatments were only adding to his misery, not relieving it — every touch, every movement seemed to hurt him — and he was no longer able to get out of bed. Encouraged by my sons and their wives, who saw no point in prolonging his agony, I reluctantly abandoned my March 26 goal and arranged for hospice care.
Francine Russo put it succinctly in her excellent new book, “They’re Your Parents, Too!” (Bantam, 2010): “The real challenge in making decisions about life-extending treatment is how much we can focus on what our dying parent needs rather than our own anguish. This is the ultimate test of emotional separation.”
And so the next day, I got in the ambulance with my husband for his transfer to Calvary Hospital, a lovely, peaceful hospice whose Brooklyn campus is at Lutheran Medical Center. The hospice physician reviewed his pain medications and immediately suggested changing to a continuous morphine drip, which greatly relieved his discomfort and my gnawing distress over watching him suffer. Nothing more to worry about, no more decisions to make.
Three days later, it was apparent to all that the end was near. He had stopped eating, no longer uttered a word and slept almost all the time. Knowing that hearing is the last sense to go, we continued to talk to him, saying how much we loved him, reading the many incredible letters and e-mail messages sent by family and friends, and wishing him a peaceful end.
Cancer, end of life Related Posts
From Well
Lessons From Hospice Care
The Wrong Care for Dementia Patients
Whose Death Is It Anyway?
Talking to Patients About Life’s End
Planning for Death When You’re Healthy
--------------------------------------------------------------------------------
1. March 15, 2010
4:25 pm
Link
I hear the love in your column. It is generous of you to share.
Judi
— J. MA
2. March 15, 2010
4:30 pm
Link
My mother is going throught the same thing. she is presently home with hospice care and malignant stage 4 lung cancer. Jane brody was fortunate to have what sounds like great doctors who took their time to walk them though every step. It took 2 months for my mother to get her eventual diagnosis. in that time whe went from walking, talking and eating like anyone else- to bedridden and only uttering a few words. Now on morphine every few hours – we just wait til the end and hold her hand.
— laurie
3. March 15, 2010
4:42 pm
Link
May his memory be eternal.
— Stamatia
4. March 15, 2010
4:44 pm
Link
Having heard so much about your life and family over all these decades, and from your stories learned so much, I am very sad, and like the reader above, marvel at your strength and generosity in sharing it with all of us.
— Lucy
5. March 15, 2010
4:44 pm
Link
My deepest condolences to Ms. Brody on the loss of her husband and lifelong partner.
I had absolutely no idea–and having been a faithful Jane Brody reader for over 30 years, I feel so sad–as one does when they discover that a friend has been going through some life tragedy–and you hadn’t a clue.
Thank you for sharing this poignant, honest, and uplifting personal story.
It’s been almost a year since my mother-in-law passed away from cancer–and she too made the decision to forgo treatments when that “tipping point” between real living and just enduring finally arrived.
“The Good Death. She Did It Her Way. At Home, With Family, Without Pain, In Comfort”
http://www.happyhealthylonglife.com/happy_healthy_long_life/2009/03/endoflife.html
— The Healthy Librarian
6. March 15, 2010
5:37 pm
Link
My condolences to you, Ms. Brody. My husband was diagnosed with the Stage 4 Lung Cancer, only his journey was a 6-month version of your husband’s, and until the final day, he was at home (palliative care having begun, with radiation too, three months into the dying, after stopping the pointlessly aggressive treatments). It would be merciful, although expensive, to have hospice facilities far more widespread than currently is the case: part of the hardship was never knowing quite when his meds needed further adjustment, or if I could have made him feel more comfortable as each symptom progressed. I have much more respect for the human race now that I see what everyone has to experience–and miraculously does!
— alix Nelson-Frick
7. March 15, 2010
5:55 pm
Link
Thanks for sharing the deeply personal experience with death and dying of a loved one and for writing about your journey.
This type of reflection is so key the healing process, which goes on in different phases for a long, long time.
My best to you, Erik and Loren. (I knew Erik–a great sports fan–Davenport ‘91er).
You and your readers might like this recent post:
http://glasshospital.com/2010/02/25/a-good-death/
-Dr. John (GlassHospital)
— John Schumann, M.D.
8. March 15, 2010
6:06 pm
Link
Thank you so much for this. I am going through something quite similar with my beloved now. While extremely difficult it is also a wide and rich experience and I have learned more about human nature than I ever expected to in my lifetime.
— Elizabeth
9. March 15, 2010
6:09 pm
Link
Thank you for sharing this. It is so important for people to “hear” this from somebody with your knowledge and authority.
— miriz
10. March 15, 2010
6:22 pm
Link
I grieve with thee. Thanks for sharing something indeed quite deeply personal; I am sure that it will be of great help to other families in the same situation. May you find comfort in memories and family.
— ClaireNYC
11. March 15, 2010
6:25 pm
Link
My brother and I found the hospice services offered by Kaiser Walnut Creek (CA) were invaluable in easing the final months of my mother’s decline due to congestive heart failure and dementia. All too often, people wait until very late in the process to access these services; my mom was able to benefit from them for more than 12 months because after nearly dying last January, she rallied. They could not help her rapid mental decline, but did ensure she suffered as little pain as possible, and relief when experiencing episodes of difficulty breathing. While we miss her enormously, we wouldn’t wish such an end on anyone–except for the blessing of hospice!
— Jenell Mahoney
12. March 15, 2010
6:30 pm
Link
Two months ago my brave 53-year old husband breathed his last breath approximately one year after his diagnosis with stage IV lung cancer. He did opt for some aggressive treatments and through the (relative) success of those treatments and his ability to tolerate them was able to see his third son get married, spend Thanksgiving with his niece at her first home, host (with me) a 10 day house party in Key West for family and friends, see the Grand Canyon, go to his favorite small lake in Wisconsin many times, for decent intervals with family, kayak, sled with his grandsons, host numerous friends and family for visits at our home, gamble at Bellagio, get his house in order in all meanings of that phrase, and at the end die peacefully with the statement that he died without fear or regrets. [He also quietly and independently did not swallow the last course of treatment, Tarceva, even though it had been prescribed. Enough was enough.]
— lin
13. March 15, 2010
6:31 pm
Link
Thank you for sharing, Ms. Brody. You have affirmed what I had already decided about end of life issues; I am truly grateful.
Peace.
— lq
14. March 15, 2010
6:36 pm
Link
I am sorry for your loss. My mother read and your clipped your column for years. You helped her with health issues from the 1970s until Alzheimers robbed her of her comprehension. Last December, we helped my mother die at home. I wrote about how we were giving her a good death for Christmas in a blog. The next day she died with all of us with her. She gave us a gift, too. The gift of acceptance.
http://caroljadams.blogspot.com/2009/12/i-will-do-my-part-giving-christmas-gift.html
— Carol J. Adams
15. March 15, 2010
6:40 pm
Link
I wish it was otherwise
— first year medicine resident
16. March 15, 2010
6:43 pm
Link
“When you need lesson along comes teacher.”
Thus it is that Jane Brody has given us nearly a parable for peaceful endings; highly personal, distinctly individual, a complete text for visualization of the quirky nature of the path that lies ahead for each of us. The key is acknowledging that the precipitous drop of death’s intrusion is long in the making.
We do not get to design a disability or the terms of death. Taking two lines from Hamlet,
“Readiness is all.” “The rest is silence.”
— Bill
17. March 15, 2010
6:44 pm
Link
I am so sorry for your loss, and thank you for sharing it with us. I have enjoyed your columns for a long time and am both grateful and sorry to have read the latest one. Wishing you peace.
— julia
18. March 15, 2010
6:51 pm
Link
Read your aricle as it caught my eye after we buried our brother this Fall after his 3 year bout with pancreatic cancer. Very similar experience with the final days. I do think there should be more guidelines for patients and families as to just when to stop treatments. Doctors always held out new procedures and new meds that might save his life, but the statistics do not show any improvement in the 2% who survive. The end is a cruel journey for both the victim and the families. We are left to make decisions that anyone wouldbe ill-equipped to make. The US Medical system needs guidelines for failure as well as success. SFS
— Sheila Stone
19. March 15, 2010
6:51 pm
Link
I hope Ms. Brody’s deeply personal column will touch many lives. As a caregiver to my husband, who had kidney cancer, it was so hard to focus on what he needed as he was dying rather than on my own anguish. I am very grateful to Houston Hospice for helping me and our family accept what was happening and make his comfort our sole priority. My grief is mitigated by the sure knowledge that we did the right thing: he left this world in peace, as he wanted.
— Erin Blair
20. March 15, 2010
6:55 pm
Link
So sorry for your loss. I am a long time follower and admirer of your columns. It is evident that the intelligence and insight that you have always provided about how we live is equally evident in this post about how we die. What is particularly striking is how well you have managed to do this even when the grief is fresh. Thank you.
— cm
21. March 15, 2010
6:57 pm
Link
I am so terribly sorry for your loss. Thank you for sharing your story with us and for showing your love for Richard by putting him first and letting him go. I am keeping you and your family in my thoughts and prayers.
— Nancy in NYC
22. March 15, 2010
7:01 pm
Link
My sincerest condolences to you and your family on the death of your husband, father, and grandfather. May his memory be a blessing. We thank you for what seems so Jane, that you have shared yourself with us all once again.
— Devera Witkin
23. March 15, 2010
7:03 pm
Link
PEACE
— a friend
24. March 15, 2010
7:08 pm
Link
I admire your bravery.
— Vickie
25. March 15, 2010
7:13 pm
Link
I am so sorry to hear of your husband’s death. Even when you know death is coming, nothing can prepare you for the grief. You are in our hearts and thoughts during this sad and difficult time.
— Maria C.
Comment
Once my Mom was gone from the lung cancer I had mixed feelings: Sad to lose her, and glad that was no longer suffering.
By THE NEW YORK TIMES
Jan van den Brink
In Tuesday’s Science Times, Personal Health columnist Jane Brody writes about her husband’s final days with Stage 4 lung cancer. She begins:
This is a very personal story of living gracefully with a fatal diagnosis. When I wrote “Jane Brody’s Guide to the Great Beyond,” I had no idea that I’d be putting its precepts into practice in my immediate family within a year of publication. But as I said in the book, “You never know.”
Read the full column here, “When the Only Hope Is a Peaceful Ending,” and please share your thoughts below.
Personal Health
When the Only Hope Is a Peaceful Ending
By JANE E. BRODY
Published: March 15, 2010
CloseLinkedinDiggFacebookMixxMySpaceYahoo! BuzzPermalink This is a very personal story of living gracefully with a fatal diagnosis. When I wrote “Jane Brody’s Guide to the Great Beyond,” I had no idea that I’d be putting its precepts into practice in my immediate family within a year of publication. But as I said in the book, “You never know.” You never know when your time will be up, and so it is best to prepare for the end sooner rather than later.
More Personal Health Columns
On Feb. 2, we learned that my husband of 43 years had Stage 4 lung cancer. There was no asking “Why me?” Richard knew very well why. He’d been a pack-a-day smoker for 50 years. Although he quit for good more than 15 years ago, it was far too late. After a few weeks of encroaching weakness and coughing, a PET scan showed that cancer was ravaging his body, taking up residence in both lungs (along with emphysema), in his spine, his adrenal glands and his brain. It was inoperable and incurable. He was looking at weeks or months of remaining life, maybe a year at most.
Long before this diagnosis, we had discussed and written down our wishes if either of us faced such a dismal prognosis. At nearly 77, Richard felt he had already cheated the grim reaper despite his long addiction to nicotine. He wanted nothing to do with drastic therapies that might grant him a few extra months at the expense of his comfort and his ability to do what needed doing before he died.
His choice — affirmed by the doctors we consulted — was for palliative treatments aimed at minimizing his pain and maximizing his function. As his health care proxy, I had long ago agreed to such a plan. Our sons and daughters-in-law knew him far too well to try to persuade him otherwise.
Treatment and Comfort
For his comfort and our convenience, we stayed with local doctors at our local hospital, New York Methodist, an affiliate of Weill Cornell Medical College. I was extraordinarily impressed with the intelligence and sensitivity of the doctors we saw: our primary care physician, whose specialty is geriatrics; the pulmonologist, who made the diagnosis and provided a pretty clear picture of what was ahead; an oncologist, who strongly recommended palliative radiation (which could, if Richard wanted it, be followed by gentle chemotherapy); a radiation oncologist, who explained how radiation could help control pain; and a neurologist, who periodically assessed his physical limitations.
We were warned of two potentially disastrous complications. Richard was already suffering from severe sciatica attributed to the spinal tumors, and we learned that these could cause permanent paralysis if they impinged on the spinal cord. The brain lesions could bleed and cause a hemorrhagic stroke. And his balance, which we realized in hindsight had been declining for months, was also at great risk from lesions in the pons, near the top of the brainstem.
And so he began three weeks of radiation to his lower spine and whole brain. For a week, though the city was blanketed by snow and his balance was iffy, he was able to walk himself with a cane to and from the hospital for treatments. But 10 days from the start of radiation, he awoke unable to walk, and the oncologist said he had to get to the hospital without delay.
The paramedics who responded to the 911 call were amazingly gentle and reassuring. A magnetic resonance imaging test of the spine and brain revealed no tumor to explain this handicap, prompting a probable diagnosis of swelling caused by the cancer, the radiation or both.
And so began a two-week hospital stay marked by increasing pain (and increasing doses of narcotics to control it), extreme weakness and constipation caused by the narcotics. Richard thought there was no point in continuing treatment; he’d never get any better or leave the hospital alive. His doctors thought otherwise and urged him to continue the radiation, along with medications to counter the swelling and constipation.
My goal, my hope, was that he would live just three more weeks and be well enough on March 26 to attend a musical celebration of his life’s work as a lyricist, at which friends and family from far and wide could say goodbye.
On the sixth morning of his hospitalization, his bowel congestion finally relieved, he awoke pain-free and cheerful and announced, half joking, “Today, I almost feel like living.” I began to breathe normally again, no small thanks to the capable and conscientious oncology nurses and nurse technicians, whose cheerful demeanor seemed able to inspire a will to live in a corpse.
A Final Journey
But this was to be only a brief reprieve. After two weeks of radiation, it became obvious that the treatments were only adding to his misery, not relieving it — every touch, every movement seemed to hurt him — and he was no longer able to get out of bed. Encouraged by my sons and their wives, who saw no point in prolonging his agony, I reluctantly abandoned my March 26 goal and arranged for hospice care.
Francine Russo put it succinctly in her excellent new book, “They’re Your Parents, Too!” (Bantam, 2010): “The real challenge in making decisions about life-extending treatment is how much we can focus on what our dying parent needs rather than our own anguish. This is the ultimate test of emotional separation.”
And so the next day, I got in the ambulance with my husband for his transfer to Calvary Hospital, a lovely, peaceful hospice whose Brooklyn campus is at Lutheran Medical Center. The hospice physician reviewed his pain medications and immediately suggested changing to a continuous morphine drip, which greatly relieved his discomfort and my gnawing distress over watching him suffer. Nothing more to worry about, no more decisions to make.
Three days later, it was apparent to all that the end was near. He had stopped eating, no longer uttered a word and slept almost all the time. Knowing that hearing is the last sense to go, we continued to talk to him, saying how much we loved him, reading the many incredible letters and e-mail messages sent by family and friends, and wishing him a peaceful end.
Cancer, end of life Related Posts
From Well
Lessons From Hospice Care
The Wrong Care for Dementia Patients
Whose Death Is It Anyway?
Talking to Patients About Life’s End
Planning for Death When You’re Healthy
--------------------------------------------------------------------------------
1. March 15, 2010
4:25 pm
Link
I hear the love in your column. It is generous of you to share.
Judi
— J. MA
2. March 15, 2010
4:30 pm
Link
My mother is going throught the same thing. she is presently home with hospice care and malignant stage 4 lung cancer. Jane brody was fortunate to have what sounds like great doctors who took their time to walk them though every step. It took 2 months for my mother to get her eventual diagnosis. in that time whe went from walking, talking and eating like anyone else- to bedridden and only uttering a few words. Now on morphine every few hours – we just wait til the end and hold her hand.
— laurie
3. March 15, 2010
4:42 pm
Link
May his memory be eternal.
— Stamatia
4. March 15, 2010
4:44 pm
Link
Having heard so much about your life and family over all these decades, and from your stories learned so much, I am very sad, and like the reader above, marvel at your strength and generosity in sharing it with all of us.
— Lucy
5. March 15, 2010
4:44 pm
Link
My deepest condolences to Ms. Brody on the loss of her husband and lifelong partner.
I had absolutely no idea–and having been a faithful Jane Brody reader for over 30 years, I feel so sad–as one does when they discover that a friend has been going through some life tragedy–and you hadn’t a clue.
Thank you for sharing this poignant, honest, and uplifting personal story.
It’s been almost a year since my mother-in-law passed away from cancer–and she too made the decision to forgo treatments when that “tipping point” between real living and just enduring finally arrived.
“The Good Death. She Did It Her Way. At Home, With Family, Without Pain, In Comfort”
http://www.happyhealthylonglife.com/happy_healthy_long_life/2009/03/endoflife.html
— The Healthy Librarian
6. March 15, 2010
5:37 pm
Link
My condolences to you, Ms. Brody. My husband was diagnosed with the Stage 4 Lung Cancer, only his journey was a 6-month version of your husband’s, and until the final day, he was at home (palliative care having begun, with radiation too, three months into the dying, after stopping the pointlessly aggressive treatments). It would be merciful, although expensive, to have hospice facilities far more widespread than currently is the case: part of the hardship was never knowing quite when his meds needed further adjustment, or if I could have made him feel more comfortable as each symptom progressed. I have much more respect for the human race now that I see what everyone has to experience–and miraculously does!
— alix Nelson-Frick
7. March 15, 2010
5:55 pm
Link
Thanks for sharing the deeply personal experience with death and dying of a loved one and for writing about your journey.
This type of reflection is so key the healing process, which goes on in different phases for a long, long time.
My best to you, Erik and Loren. (I knew Erik–a great sports fan–Davenport ‘91er).
You and your readers might like this recent post:
http://glasshospital.com/2010/02/25/a-good-death/
-Dr. John (GlassHospital)
— John Schumann, M.D.
8. March 15, 2010
6:06 pm
Link
Thank you so much for this. I am going through something quite similar with my beloved now. While extremely difficult it is also a wide and rich experience and I have learned more about human nature than I ever expected to in my lifetime.
— Elizabeth
9. March 15, 2010
6:09 pm
Link
Thank you for sharing this. It is so important for people to “hear” this from somebody with your knowledge and authority.
— miriz
10. March 15, 2010
6:22 pm
Link
I grieve with thee. Thanks for sharing something indeed quite deeply personal; I am sure that it will be of great help to other families in the same situation. May you find comfort in memories and family.
— ClaireNYC
11. March 15, 2010
6:25 pm
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My brother and I found the hospice services offered by Kaiser Walnut Creek (CA) were invaluable in easing the final months of my mother’s decline due to congestive heart failure and dementia. All too often, people wait until very late in the process to access these services; my mom was able to benefit from them for more than 12 months because after nearly dying last January, she rallied. They could not help her rapid mental decline, but did ensure she suffered as little pain as possible, and relief when experiencing episodes of difficulty breathing. While we miss her enormously, we wouldn’t wish such an end on anyone–except for the blessing of hospice!
— Jenell Mahoney
12. March 15, 2010
6:30 pm
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Two months ago my brave 53-year old husband breathed his last breath approximately one year after his diagnosis with stage IV lung cancer. He did opt for some aggressive treatments and through the (relative) success of those treatments and his ability to tolerate them was able to see his third son get married, spend Thanksgiving with his niece at her first home, host (with me) a 10 day house party in Key West for family and friends, see the Grand Canyon, go to his favorite small lake in Wisconsin many times, for decent intervals with family, kayak, sled with his grandsons, host numerous friends and family for visits at our home, gamble at Bellagio, get his house in order in all meanings of that phrase, and at the end die peacefully with the statement that he died without fear or regrets. [He also quietly and independently did not swallow the last course of treatment, Tarceva, even though it had been prescribed. Enough was enough.]
— lin
13. March 15, 2010
6:31 pm
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Thank you for sharing, Ms. Brody. You have affirmed what I had already decided about end of life issues; I am truly grateful.
Peace.
— lq
14. March 15, 2010
6:36 pm
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I am sorry for your loss. My mother read and your clipped your column for years. You helped her with health issues from the 1970s until Alzheimers robbed her of her comprehension. Last December, we helped my mother die at home. I wrote about how we were giving her a good death for Christmas in a blog. The next day she died with all of us with her. She gave us a gift, too. The gift of acceptance.
http://caroljadams.blogspot.com/2009/12/i-will-do-my-part-giving-christmas-gift.html
— Carol J. Adams
15. March 15, 2010
6:40 pm
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I wish it was otherwise
— first year medicine resident
16. March 15, 2010
6:43 pm
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“When you need lesson along comes teacher.”
Thus it is that Jane Brody has given us nearly a parable for peaceful endings; highly personal, distinctly individual, a complete text for visualization of the quirky nature of the path that lies ahead for each of us. The key is acknowledging that the precipitous drop of death’s intrusion is long in the making.
We do not get to design a disability or the terms of death. Taking two lines from Hamlet,
“Readiness is all.” “The rest is silence.”
— Bill
17. March 15, 2010
6:44 pm
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I am so sorry for your loss, and thank you for sharing it with us. I have enjoyed your columns for a long time and am both grateful and sorry to have read the latest one. Wishing you peace.
— julia
18. March 15, 2010
6:51 pm
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Read your aricle as it caught my eye after we buried our brother this Fall after his 3 year bout with pancreatic cancer. Very similar experience with the final days. I do think there should be more guidelines for patients and families as to just when to stop treatments. Doctors always held out new procedures and new meds that might save his life, but the statistics do not show any improvement in the 2% who survive. The end is a cruel journey for both the victim and the families. We are left to make decisions that anyone wouldbe ill-equipped to make. The US Medical system needs guidelines for failure as well as success. SFS
— Sheila Stone
19. March 15, 2010
6:51 pm
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I hope Ms. Brody’s deeply personal column will touch many lives. As a caregiver to my husband, who had kidney cancer, it was so hard to focus on what he needed as he was dying rather than on my own anguish. I am very grateful to Houston Hospice for helping me and our family accept what was happening and make his comfort our sole priority. My grief is mitigated by the sure knowledge that we did the right thing: he left this world in peace, as he wanted.
— Erin Blair
20. March 15, 2010
6:55 pm
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So sorry for your loss. I am a long time follower and admirer of your columns. It is evident that the intelligence and insight that you have always provided about how we live is equally evident in this post about how we die. What is particularly striking is how well you have managed to do this even when the grief is fresh. Thank you.
— cm
21. March 15, 2010
6:57 pm
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I am so terribly sorry for your loss. Thank you for sharing your story with us and for showing your love for Richard by putting him first and letting him go. I am keeping you and your family in my thoughts and prayers.
— Nancy in NYC
22. March 15, 2010
7:01 pm
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My sincerest condolences to you and your family on the death of your husband, father, and grandfather. May his memory be a blessing. We thank you for what seems so Jane, that you have shared yourself with us all once again.
— Devera Witkin
23. March 15, 2010
7:03 pm
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PEACE
— a friend
24. March 15, 2010
7:08 pm
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I admire your bravery.
— Vickie
25. March 15, 2010
7:13 pm
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I am so sorry to hear of your husband’s death. Even when you know death is coming, nothing can prepare you for the grief. You are in our hearts and thoughts during this sad and difficult time.
— Maria C.
Comment
Once my Mom was gone from the lung cancer I had mixed feelings: Sad to lose her, and glad that was no longer suffering.
With Cancer, Let’s Face It: Words Are Inadequate
March 15, 2010, 4:47 pm
By DANA JENNINGS
James Steinberg
We’re all familiar with sentences like this one: Mr. Smith died yesterday after a long battle with cancer. We think we know what it means, but we read it and hear it so often that it carries little weight, bears no meaning. It’s one of the clichés of cancer.
It is easy shorthand. But it says more about the writer or speaker than it does about the deceased. We like to say that people “fight” cancer because we wrestle fearfully with the notion of ever having the disease. We have turned cancer into one of our modern devils.
But after staggering through prostate cancer and its treatment — surgery, radiation and hormone therapy — the words “fight” and “battle” make me cringe and bristle.
I sometimes think of cancer as a long and difficult journey, a quest out of Tolkien, or a dark waltz — but never a battle. How can it be a battle when we patients are the actual battleground? We are caught in the middle, between our doctors and their potential tools of healing and the cell-devouring horde.
We become a wasteland, at once infested by the black dust of cancer and damaged by the “friendly fire” of treatment. And ordinary language falls far short of explaining that keen sense of oblivion.
As a patient, it’s hard to articulate how being seriously ill feels. In a profound way, we are boiled down to our essential animal selves. We crave survival. We long for pain to end, for ice chips on parched lips, for the brush of a soft hand.
It pays to have a positive outlook, I think, but that in no way translates to “fighting” cancer. Cancer simply is. You can deny its presence in your body, cower at the thought or boldly state that you’re going to whup it. But the cancer does not care. You’re here, the cancer has arrived, and the disease is going to feed until your doctors destroy it or, at least, discourage it.
Then there’s the matter of bravery. We call cancer patients “brave,” perhaps, because the very word cancer makes most of us tremble in fear. But there is nothing brave about showing up for surgery or radiation sessions. Is a tree brave for still standing after its leaves shrivel and fall? Bravery entails choice, and most patients have very little choice but to undergo treatment.
Which brings me to “victim.” I didn’t feel like a victim when I learned that I had cancer. Sure, I felt unlucky and sad and angry, but not like a victim. And I have no patience for the modern cult of victimology.
Victim implies an assailant, and there is no malice or intent with cancer. Some cells in my body mutinied, and I became a host organism — all of it completely organic and natural.
And what are we once treatment ends? Are we survivors? I don’t feel much like a survivor in the traditional (or even reality TV) sense. I didn’t crawl from a burning building or come home whole from a tour of duty in Afghanistan.
I’m just trying to lead a positive postcancer life, grateful that my surging Stage 3 cancer has been turned aside, pleased that I can realistically think about the future. I’m trying to complete the metamorphosis from brittle husk to being just me again.
The phrase “salvage radiation” is not used much anymore, but when one doctor said it in reference to my treatment, it made me feel less human and more like a “case.” It meant I needed radiation after surgery, because the cancer was more aggressive than expected — I needed to be “salvaged.”
I felt as if I had been plopped into some screwy sequel to “Raise the Titanic!” — time to raise the U.S.S. Jennings, lads. Or maybe I was going to get picked up by a scrap-metal truck and then get zapped at Frank’s Junkyard, laid out in the back seat of a 1960 Ford Fairlane.
And I’m still troubled by this sentence, which I’ve heard many times: “Well, at least it’s a good cancer.” It’s usually applied to cancers that are considered highly treatable, like those of the prostate and thyroid.
Most people mean well, but the idea of a good cancer makes no sense. At best, the words break meaninglessly over the patient. There are no good cancers, just as there are no good wars, no good earthquakes.
Words can just be inadequate. And as we stumble and trip toward trying to say the right and true thing, we often reach for the nearest rotted-out cliché for support. Better to say nothing, and offer the gift of your presence, than to utter bankrupt bromides.
Silences make us squirm. But when I was sickest, most numbed by my treatment, it was more than healing to bask in a friend’s compassionate silence, to receive and give a hug, to be sustained by a genuine smile.
Strangely enough, although cancer threatened my life it also exalted it, brought with it a bright and terrible clarity.
So, no, cancer isn’t a battle, a fight. It’s simply life — life raised to a higher power.
Dana Jennings, Dana Jennings, Jennings Related Posts
From Well
Life With a Pouch on the Side
After Surviving Cancer, a Focus on True Manhood
Living in the Post-Cancer Moment
The Long Recovery of Cancer
Feeling Like Myself Again After Cancer
--------------------------------------------------------------------------------
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1. March 15, 2010
5:05 pm
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God bless you and your family mr. Jennings
— Cindy
2. March 15, 2010
5:14 pm
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Dana, you make so many good points about the inadequacies of words…While I went through my treatment, I heard a lot of stupid things, said with warm hearts. I never questioned their words, knowing they were doing the best they could with the little they had. I too hated the terminology, the fight, the battle, the surviving. Who fights diabetes? Who survives a broken ankle or heart disease? But I think anything said in kindness is a net good. I wish we had less reactive language to use with respect to cancer. Of all my friends, family and colleagues, only one work colleague never said a word while I went through my treatment. I think she cared, but I still wonder why she never asked how I was, or how I was doing, still, years later. I’m sure it was because she didn’t have the language to ask…but I wish she had tried.
— Kat
3. March 15, 2010
5:18 pm
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Thank you for your exquisite writing. Mine is breast cancer. Avanti! This is the life!
— Marilyn Blundin
4. March 15, 2010
5:19 pm
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Wow.
Dana, I’ve come to think of you as a special friend of mine, who can find the right words for the things I didn’t know I wanted to say.
I do agree that it is better to say nothing, or very little, rather than say the wrong thing. I had a friend avoid me because he didn’t know what to say. I called him on it, and he blurted out, “I’m worried about you, I’m scared you’ll die, I want you to get better.” I appreciated that MUCH more than the people who told me I’d make it because I was a strong fighter. I’ve wanted many times to ask that person, “Okay, if I die does that mean I was weak?” But there is this strange self-imposed etiquette when you have cancer and someone says something stupid to you. You can’t upset them, you have to comfort them.
Just once I’d like to read an obit that said, “After a sensible acceptance of her cancer, Jane Doe passed away at home under hospice care.”
— Alice Payne
5. March 15, 2010
5:20 pm
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Well said. And let’s take the phrase ‘lost her battle to cancer’ out of the mix as well. That one really gets to me, like it was the patient’s fault that he or she died.
So true also about the clarity that life threatening illness can bring. As Theodor Roethke said “In a dark time, the eye begins to see…”
Stage 4, head and neck cancer ten years ago. Thanks, your words are more than adequate. They are right on target.
— Kathy
6. March 15, 2010
5:27 pm
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Wonderfully written. It’s true that often words are inadequate to describe such situations, yet we as humans almost always find the need to speak. I enjoyed your analogy of the patient being the battleground. although I still give patient’s credit for being brave. However, maybe this is just by undying need to use words to describe a situation.
http://foodfitnessfreshair.wordpress.com/
— FoodFitnessFreshair
7. March 15, 2010
5:28 pm
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Truly eloquently said. I hope many people will read your piece. In what are mostly desperate attempts to sound “hopeful”, to encourage the friend who is ill, I recognize that I have fallen into the very clichés you deplore and so has everyone I know. Words are indeed completely inadequate, and yet you have found a way to use them to enlighten the rest of us. Thank you.
— Nancy Guri Duncan
8. March 15, 2010
5:35 pm
Link
Dear Dana,
According to my research, three of the top 20 statements people with cancer want the walking well to know are:
• “Telling me to think positively can make me feel worse;”
• “Hearing platitudes or what’s good about cancer can trivialize my feelings;” and
• “I need you to listen to me and let me cry.”
As always, you’ve articulated these concepts perfectly. Thank you for being the voice for the tens of millions who have been punched by cancer. (As a writer and cancer survivor, euphemisms or misnomers such as “touched by cancer” hurt almost as much as hearing cancer horror stories).
And if you haven’t already, please check out the “Health Care as Though People Matter,” blog by physician Jeff Kane, MD, author of “How to Heal: A Guide for Caregivers.” Dr. Kane’s February 10 blog post, titled, “Cancer Victim Loses Battle” will certainly resonate with you. (http://healthcareasthoughpeoplematter.blogspot.com/)
Respectfully and gratefully yours,
Lori Hope
http://www.lorihope.com/blog
— Lori Hope
9. March 15, 2010
5:37 pm
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Read this one all the way through. It seems to say it well. Raising life to a higher power, whatever or whoever that may be. xox
— Joyce
10. March 15, 2010
5:39 pm
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I do like the term “cancer survivor”. My husband went through testicular cancer 20 years ago.
Once cancer comes and visit you, it never leaves completely. Even though I ‘ve never been sick, we read a lot about it, we try to be informed, I know at some point either me or our children will have it.
Last year we participated in a cancer run, it was a therapeutic experience. The survivors were in a red t-shirt. A sea of white with some red dots now and then.
The red dots smiled to each other, even introduced themselves. We were very aware that you, that are in a red t-shirt, you are a lucky one. We could even feel the thousands of red dots that were not with us that day.
For the first time my husband felt like a survivor. It was magical. (pardon my english, I am not a native speaker)
Thank you again Dana.
— Mariana
11. March 15, 2010
5:40 pm
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Thank you so much for writing this.
— Stupendousness
12. March 15, 2010
5:43 pm
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I liked the last comment “In a dark time, the eye begins to see….” I would end that quote with, the fragility of life.
— Joan
13. March 15, 2010
5:55 pm
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And this is why poetry is needed – it is the task of expressing what is ostensibly inexpressible; it is not only the task but the activity of. Jack Gilbert’s “The Great Fires” is testament to this.
— Bobby
14. March 15, 2010
5:55 pm
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This is so true.
When my dad had cancer, it was such a terrible, terrible time for him and the whole family, and I had little patience for well-wishers who beamingly spurted out those meaningless cliches. What was even worse was the “advice” that was given to my father and mother – things like “You just need to stay positive,” and “Don’t you stop fighting, ok?” as though if my dad got sicker it was his fault for being grumpy and lazy.
Honest concern is hard to vocalize because those words are a response to, and therefore a reflection of, the raw pain that is the very nature of the disease. Still, I truly appreciate those loved ones who said what they honestly felt and meant, as well as those who were comfortingly present and silent. They are the people who made my father’s and family’s journey more bearable, while the walking Hallmark cards only ever managed to make everyone feel worse.
— Rachel
15. March 15, 2010
5:55 pm
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Dana,
100% agreement! Language and how it is used is so important. So is context. I share with you what I wrote for my synagogue’s newsletter which reflects exactly what you write:
Dear Friends,
It has been quite a month! On January 1st we had a lovely service that honored the memory of Cheryl’s husband, Peter. By Sunday morning I was in the Emergency Room of the Bennington Hospital, soon to be transferred by ambulance to Albany Medical Center. This is when I no longer remember what happened. From my time at Albany Medical until I woke-up on Saturday night I was not aware of my surroundings. Yet wake-up I did. Saturday night found me with two pot holders on my hand constantly trying to scratch my head. Sunday. Monday. Tuesday. Wednesday. Thursday. It was time to leave to go to the Sunnyview Rehabilitation Hospital. Another ambulance. Entering Sunnyview and voila–I did not need to be there. I was released on Shabbat morning when Yuval was able to drive me to Manchester Center (thank you, Yuval).
Yesterday was the pathology report. While it was not what one would characterize as an extremely positive, it is not going to beat me down, hold me back, or break my spirit. No, we will treat this. We will come around on the other side.
I want to share with you the idea of the “war metaphor”–which is that you “attack” cancer. That is not the metaphor I adopt. This will not be a cancer that is attacked. This will be a cancer that gets treated and hopefully disappears. Fighting is not how I choose to do this. Instead I seek shleimut, wholeness. My brain is sick. The rest of my body is healthy. Let’s cure the brain.
Finally I want to tell you how overwhelmed I am with all of your messages to me. Thousands and thousands of messages are up on the websites (did you know there are three of them, in addition to the email?) This community is amazing. You are together. You are raising the bar so much higher than it was before. I want you to know that this makes me grateful.
I will conclude with words from Tehilliam, our psalms: “Zeh hayom asah HaShem, nagila v’nismicha bo: This is a day that God has made: Let us be glad and rejoice in it.”
With love,
David
— David Novak
16. March 15, 2010
5:57 pm
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Have just stumbled upon your article quite accidentally. It’s almost 10pm & I am in bed in Essex (just outside London)trying to purchase a paint tester pot. I literally must have mis tapped a couple of letters on the keyboard & up came the NY Times & your article. I was feeling a bit low after a very dodgy telephone conversation a few mins ago about my breast cancer with a well meaning friend. Reading your article has made all the difference to my evening. Many Thanks.
Janey :-)
— Jane
17. March 15, 2010
6:05 pm
Link
Whether it is cancer or lupus or any other chronic disease, illness is an impossible condition to describe.
Perhaps it is the fact that the physical feelings involved (fatigue, pain, discomfort, nausea) are all so personal. We each have our own threshold for each of these symptoms and our interpretation, of what these words mean, are vary dramatically.
On top of that, the emotions involved with disease are equally complex, as we often second guess ourselves (I can push harder, can’t I?) or chastise ourselves for, as you say, not being the “hero” others have been. When this happens, not only is the lexicon lacking, but our own willingness to speak about our condition becomes equally dampened.
So without words, how do we justly share our stories? I have struggled with this conundrum for some time and think I have two solutions. One, use tangible objects. Whether it is an essay of photographs or the use of spoons as metaphor for measurements of energy, pairing words with something graphic seems to reveal more facets of the day-to-day life. Secondly, never stop trying. Just because we don’t have the words now doesn’t mean we won’t at some point. And every time someone shares his or her tale, like you Dana, we, as a community, grow closer to painting the big picture of living with a disease.
Thank you for another great post.
http://www.sodiumgirl.com
— sodium girl
18. March 15, 2010
6:19 pm
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Thank you for such an honest and refreshing piece. My wife was diagnosed with a low-grade brain tumor over eight years ago (for which she has had three surgeries) and we struggle with the impossible questions from many friends and family that live in the binary worlds of ‘benign growth’ or ‘cancer’ and ‘cured’ or ‘dying’. How does one go about answering questions such as ‘did they get it all?’ or ‘but she is going to be ok, right?’. For us, the entire experience has been one of balance…managing the condition while living our lives…sharing information while giving comfort (and, perhaps, false assurances).
So much more that I would like to hear…so much more that needs to be said. Thank you again.
— Oscar
19. March 15, 2010
6:32 pm
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Speak for yourself. My mother was very brave to submit to surgery, rehab, chemo and a year of trying to survive and finally face death. She made this supreme effort at 86 as much for her children and grandchildren as for herself. No one will know whether the year she gained was worth her suffering and effort, but I admire her courage. The only word I have to describe her attitude was strength. I will be so lucky if I possess half of hers if my time comes.
— Spofford Torrington
20. March 15, 2010
6:48 pm
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In the last two years, I have had three close friends develop three different kinds of cancer. In all three cases, they wanted no words at all – at least related to health or cancer or treatment. They all said outright they wanted life to go on as it always had before. So I don’t ever ask “how are you feeling” or crap like that. But I do call for no reason to tell them of something funny or interesting that happened. And I spontaneously invite them over more often than before. Those kinds of words seem to work. … At least they do for me.
— Spencer
21. March 15, 2010
6:55 pm
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Cyber hugs Dana,your columns always bring me to tears,you have a lot of courage in both dealing with your cancer and writing about it so honestly,I’m sure you are helping many,many people.
— maureen
22. March 15, 2010
6:55 pm
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Dear Dana Jennings, Your columns about your experiences with cancer are some of the best writing on the topic I have ever seen. (I have quoted and passed on your piece about hot flashes to countless people–mostly husbands of my patients. It’s priceless!)
I’m so grateful to you.
— oncologyNP
23. March 15, 2010
6:55 pm
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So beautifully stated! I had the same thoughts & feelings when I was diagnosed with breast cancer: how could I go to war against my own body? I even refused to use the word “chemo,” which sounded toxic to me; I called it chemoTHERAPY.
The link below is an essay I wrote about cancer and language, published in “Pulse” magazine.
http://www.pulsemagazine.org/Archive_Index.cfm?content_id=45
— Elaine
24. March 15, 2010
6:55 pm
Link
it’s been 5 yrs since i was diagnosed w/ a brain tumor and still – when friends or family or other – have faced the trauma of cancer i find myself at a loss for words. there is a natural inclination for the uninitiated to ascribe some name for what it takes to stand in the face of approaching oblivion and far often than not what falls out is ‘bravery’, ’strength’, ‘battle’. I do not think all people say these things to be shallow or look no deeper into the experience but because they can not know (or rather do not yet know) what the concept of facing your death looks/feels like. my wife and i always use the metaphor of returning from an overseas war. only the people in battle can truly understand. for the rest, i’m a ‘brave soldier’
— Brian P
25. March 15, 2010
6:56 pm
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Thank you, Dana, for being able to put your thoughts and feelings into such exquisite form and then put them out here for the rest of us.
I have read your other articles on your experience, and think you and your ability to express is an absolute treasure. I appreciate the fact that you exist, think, feel, and then write about it. I am sorry that you went through this, but, it is the same fate which may await many of us, and we need to read, ponder, and try to learn from your words.
— Janet
Comment
My Mom died of lung cancer almost seven years ago. The process took 18 months and encompassed four course of chemotherapy. After four chemo series' she didnt see any improvement and neither did the doctor, so she just said, "Enough". Eacxh of those chemo treatments cost $1500 and more and although she had Medicare her copay was significant. She said, "I can use all the money I have saved all these years to get more chemo and maybe live one more year, winding up as a bag lady living under a bridge. Or I can quit and live the rest of my life as comfortably as possible until the end. I choose the latter." She was very brave the entire time and had most of her ducks in order by the end, financially and emotionally. I still miss her sometimes, when something important in my life happens and I want to call her and let her know.
By DANA JENNINGS
James Steinberg
We’re all familiar with sentences like this one: Mr. Smith died yesterday after a long battle with cancer. We think we know what it means, but we read it and hear it so often that it carries little weight, bears no meaning. It’s one of the clichés of cancer.
It is easy shorthand. But it says more about the writer or speaker than it does about the deceased. We like to say that people “fight” cancer because we wrestle fearfully with the notion of ever having the disease. We have turned cancer into one of our modern devils.
But after staggering through prostate cancer and its treatment — surgery, radiation and hormone therapy — the words “fight” and “battle” make me cringe and bristle.
I sometimes think of cancer as a long and difficult journey, a quest out of Tolkien, or a dark waltz — but never a battle. How can it be a battle when we patients are the actual battleground? We are caught in the middle, between our doctors and their potential tools of healing and the cell-devouring horde.
We become a wasteland, at once infested by the black dust of cancer and damaged by the “friendly fire” of treatment. And ordinary language falls far short of explaining that keen sense of oblivion.
As a patient, it’s hard to articulate how being seriously ill feels. In a profound way, we are boiled down to our essential animal selves. We crave survival. We long for pain to end, for ice chips on parched lips, for the brush of a soft hand.
It pays to have a positive outlook, I think, but that in no way translates to “fighting” cancer. Cancer simply is. You can deny its presence in your body, cower at the thought or boldly state that you’re going to whup it. But the cancer does not care. You’re here, the cancer has arrived, and the disease is going to feed until your doctors destroy it or, at least, discourage it.
Then there’s the matter of bravery. We call cancer patients “brave,” perhaps, because the very word cancer makes most of us tremble in fear. But there is nothing brave about showing up for surgery or radiation sessions. Is a tree brave for still standing after its leaves shrivel and fall? Bravery entails choice, and most patients have very little choice but to undergo treatment.
Which brings me to “victim.” I didn’t feel like a victim when I learned that I had cancer. Sure, I felt unlucky and sad and angry, but not like a victim. And I have no patience for the modern cult of victimology.
Victim implies an assailant, and there is no malice or intent with cancer. Some cells in my body mutinied, and I became a host organism — all of it completely organic and natural.
And what are we once treatment ends? Are we survivors? I don’t feel much like a survivor in the traditional (or even reality TV) sense. I didn’t crawl from a burning building or come home whole from a tour of duty in Afghanistan.
I’m just trying to lead a positive postcancer life, grateful that my surging Stage 3 cancer has been turned aside, pleased that I can realistically think about the future. I’m trying to complete the metamorphosis from brittle husk to being just me again.
The phrase “salvage radiation” is not used much anymore, but when one doctor said it in reference to my treatment, it made me feel less human and more like a “case.” It meant I needed radiation after surgery, because the cancer was more aggressive than expected — I needed to be “salvaged.”
I felt as if I had been plopped into some screwy sequel to “Raise the Titanic!” — time to raise the U.S.S. Jennings, lads. Or maybe I was going to get picked up by a scrap-metal truck and then get zapped at Frank’s Junkyard, laid out in the back seat of a 1960 Ford Fairlane.
And I’m still troubled by this sentence, which I’ve heard many times: “Well, at least it’s a good cancer.” It’s usually applied to cancers that are considered highly treatable, like those of the prostate and thyroid.
Most people mean well, but the idea of a good cancer makes no sense. At best, the words break meaninglessly over the patient. There are no good cancers, just as there are no good wars, no good earthquakes.
Words can just be inadequate. And as we stumble and trip toward trying to say the right and true thing, we often reach for the nearest rotted-out cliché for support. Better to say nothing, and offer the gift of your presence, than to utter bankrupt bromides.
Silences make us squirm. But when I was sickest, most numbed by my treatment, it was more than healing to bask in a friend’s compassionate silence, to receive and give a hug, to be sustained by a genuine smile.
Strangely enough, although cancer threatened my life it also exalted it, brought with it a bright and terrible clarity.
So, no, cancer isn’t a battle, a fight. It’s simply life — life raised to a higher power.
Dana Jennings, Dana Jennings, Jennings Related Posts
From Well
Life With a Pouch on the Side
After Surviving Cancer, a Focus on True Manhood
Living in the Post-Cancer Moment
The Long Recovery of Cancer
Feeling Like Myself Again After Cancer
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1. March 15, 2010
5:05 pm
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God bless you and your family mr. Jennings
— Cindy
2. March 15, 2010
5:14 pm
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Dana, you make so many good points about the inadequacies of words…While I went through my treatment, I heard a lot of stupid things, said with warm hearts. I never questioned their words, knowing they were doing the best they could with the little they had. I too hated the terminology, the fight, the battle, the surviving. Who fights diabetes? Who survives a broken ankle or heart disease? But I think anything said in kindness is a net good. I wish we had less reactive language to use with respect to cancer. Of all my friends, family and colleagues, only one work colleague never said a word while I went through my treatment. I think she cared, but I still wonder why she never asked how I was, or how I was doing, still, years later. I’m sure it was because she didn’t have the language to ask…but I wish she had tried.
— Kat
3. March 15, 2010
5:18 pm
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Thank you for your exquisite writing. Mine is breast cancer. Avanti! This is the life!
— Marilyn Blundin
4. March 15, 2010
5:19 pm
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Wow.
Dana, I’ve come to think of you as a special friend of mine, who can find the right words for the things I didn’t know I wanted to say.
I do agree that it is better to say nothing, or very little, rather than say the wrong thing. I had a friend avoid me because he didn’t know what to say. I called him on it, and he blurted out, “I’m worried about you, I’m scared you’ll die, I want you to get better.” I appreciated that MUCH more than the people who told me I’d make it because I was a strong fighter. I’ve wanted many times to ask that person, “Okay, if I die does that mean I was weak?” But there is this strange self-imposed etiquette when you have cancer and someone says something stupid to you. You can’t upset them, you have to comfort them.
Just once I’d like to read an obit that said, “After a sensible acceptance of her cancer, Jane Doe passed away at home under hospice care.”
— Alice Payne
5. March 15, 2010
5:20 pm
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Well said. And let’s take the phrase ‘lost her battle to cancer’ out of the mix as well. That one really gets to me, like it was the patient’s fault that he or she died.
So true also about the clarity that life threatening illness can bring. As Theodor Roethke said “In a dark time, the eye begins to see…”
Stage 4, head and neck cancer ten years ago. Thanks, your words are more than adequate. They are right on target.
— Kathy
6. March 15, 2010
5:27 pm
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Wonderfully written. It’s true that often words are inadequate to describe such situations, yet we as humans almost always find the need to speak. I enjoyed your analogy of the patient being the battleground. although I still give patient’s credit for being brave. However, maybe this is just by undying need to use words to describe a situation.
http://foodfitnessfreshair.wordpress.com/
— FoodFitnessFreshair
7. March 15, 2010
5:28 pm
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Truly eloquently said. I hope many people will read your piece. In what are mostly desperate attempts to sound “hopeful”, to encourage the friend who is ill, I recognize that I have fallen into the very clichés you deplore and so has everyone I know. Words are indeed completely inadequate, and yet you have found a way to use them to enlighten the rest of us. Thank you.
— Nancy Guri Duncan
8. March 15, 2010
5:35 pm
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Dear Dana,
According to my research, three of the top 20 statements people with cancer want the walking well to know are:
• “Telling me to think positively can make me feel worse;”
• “Hearing platitudes or what’s good about cancer can trivialize my feelings;” and
• “I need you to listen to me and let me cry.”
As always, you’ve articulated these concepts perfectly. Thank you for being the voice for the tens of millions who have been punched by cancer. (As a writer and cancer survivor, euphemisms or misnomers such as “touched by cancer” hurt almost as much as hearing cancer horror stories).
And if you haven’t already, please check out the “Health Care as Though People Matter,” blog by physician Jeff Kane, MD, author of “How to Heal: A Guide for Caregivers.” Dr. Kane’s February 10 blog post, titled, “Cancer Victim Loses Battle” will certainly resonate with you. (http://healthcareasthoughpeoplematter.blogspot.com/)
Respectfully and gratefully yours,
Lori Hope
http://www.lorihope.com/blog
— Lori Hope
9. March 15, 2010
5:37 pm
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Read this one all the way through. It seems to say it well. Raising life to a higher power, whatever or whoever that may be. xox
— Joyce
10. March 15, 2010
5:39 pm
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I do like the term “cancer survivor”. My husband went through testicular cancer 20 years ago.
Once cancer comes and visit you, it never leaves completely. Even though I ‘ve never been sick, we read a lot about it, we try to be informed, I know at some point either me or our children will have it.
Last year we participated in a cancer run, it was a therapeutic experience. The survivors were in a red t-shirt. A sea of white with some red dots now and then.
The red dots smiled to each other, even introduced themselves. We were very aware that you, that are in a red t-shirt, you are a lucky one. We could even feel the thousands of red dots that were not with us that day.
For the first time my husband felt like a survivor. It was magical. (pardon my english, I am not a native speaker)
Thank you again Dana.
— Mariana
11. March 15, 2010
5:40 pm
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Thank you so much for writing this.
— Stupendousness
12. March 15, 2010
5:43 pm
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I liked the last comment “In a dark time, the eye begins to see….” I would end that quote with, the fragility of life.
— Joan
13. March 15, 2010
5:55 pm
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And this is why poetry is needed – it is the task of expressing what is ostensibly inexpressible; it is not only the task but the activity of. Jack Gilbert’s “The Great Fires” is testament to this.
— Bobby
14. March 15, 2010
5:55 pm
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This is so true.
When my dad had cancer, it was such a terrible, terrible time for him and the whole family, and I had little patience for well-wishers who beamingly spurted out those meaningless cliches. What was even worse was the “advice” that was given to my father and mother – things like “You just need to stay positive,” and “Don’t you stop fighting, ok?” as though if my dad got sicker it was his fault for being grumpy and lazy.
Honest concern is hard to vocalize because those words are a response to, and therefore a reflection of, the raw pain that is the very nature of the disease. Still, I truly appreciate those loved ones who said what they honestly felt and meant, as well as those who were comfortingly present and silent. They are the people who made my father’s and family’s journey more bearable, while the walking Hallmark cards only ever managed to make everyone feel worse.
— Rachel
15. March 15, 2010
5:55 pm
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Dana,
100% agreement! Language and how it is used is so important. So is context. I share with you what I wrote for my synagogue’s newsletter which reflects exactly what you write:
Dear Friends,
It has been quite a month! On January 1st we had a lovely service that honored the memory of Cheryl’s husband, Peter. By Sunday morning I was in the Emergency Room of the Bennington Hospital, soon to be transferred by ambulance to Albany Medical Center. This is when I no longer remember what happened. From my time at Albany Medical until I woke-up on Saturday night I was not aware of my surroundings. Yet wake-up I did. Saturday night found me with two pot holders on my hand constantly trying to scratch my head. Sunday. Monday. Tuesday. Wednesday. Thursday. It was time to leave to go to the Sunnyview Rehabilitation Hospital. Another ambulance. Entering Sunnyview and voila–I did not need to be there. I was released on Shabbat morning when Yuval was able to drive me to Manchester Center (thank you, Yuval).
Yesterday was the pathology report. While it was not what one would characterize as an extremely positive, it is not going to beat me down, hold me back, or break my spirit. No, we will treat this. We will come around on the other side.
I want to share with you the idea of the “war metaphor”–which is that you “attack” cancer. That is not the metaphor I adopt. This will not be a cancer that is attacked. This will be a cancer that gets treated and hopefully disappears. Fighting is not how I choose to do this. Instead I seek shleimut, wholeness. My brain is sick. The rest of my body is healthy. Let’s cure the brain.
Finally I want to tell you how overwhelmed I am with all of your messages to me. Thousands and thousands of messages are up on the websites (did you know there are three of them, in addition to the email?) This community is amazing. You are together. You are raising the bar so much higher than it was before. I want you to know that this makes me grateful.
I will conclude with words from Tehilliam, our psalms: “Zeh hayom asah HaShem, nagila v’nismicha bo: This is a day that God has made: Let us be glad and rejoice in it.”
With love,
David
— David Novak
16. March 15, 2010
5:57 pm
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Have just stumbled upon your article quite accidentally. It’s almost 10pm & I am in bed in Essex (just outside London)trying to purchase a paint tester pot. I literally must have mis tapped a couple of letters on the keyboard & up came the NY Times & your article. I was feeling a bit low after a very dodgy telephone conversation a few mins ago about my breast cancer with a well meaning friend. Reading your article has made all the difference to my evening. Many Thanks.
Janey :-)
— Jane
17. March 15, 2010
6:05 pm
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Whether it is cancer or lupus or any other chronic disease, illness is an impossible condition to describe.
Perhaps it is the fact that the physical feelings involved (fatigue, pain, discomfort, nausea) are all so personal. We each have our own threshold for each of these symptoms and our interpretation, of what these words mean, are vary dramatically.
On top of that, the emotions involved with disease are equally complex, as we often second guess ourselves (I can push harder, can’t I?) or chastise ourselves for, as you say, not being the “hero” others have been. When this happens, not only is the lexicon lacking, but our own willingness to speak about our condition becomes equally dampened.
So without words, how do we justly share our stories? I have struggled with this conundrum for some time and think I have two solutions. One, use tangible objects. Whether it is an essay of photographs or the use of spoons as metaphor for measurements of energy, pairing words with something graphic seems to reveal more facets of the day-to-day life. Secondly, never stop trying. Just because we don’t have the words now doesn’t mean we won’t at some point. And every time someone shares his or her tale, like you Dana, we, as a community, grow closer to painting the big picture of living with a disease.
Thank you for another great post.
http://www.sodiumgirl.com
— sodium girl
18. March 15, 2010
6:19 pm
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Thank you for such an honest and refreshing piece. My wife was diagnosed with a low-grade brain tumor over eight years ago (for which she has had three surgeries) and we struggle with the impossible questions from many friends and family that live in the binary worlds of ‘benign growth’ or ‘cancer’ and ‘cured’ or ‘dying’. How does one go about answering questions such as ‘did they get it all?’ or ‘but she is going to be ok, right?’. For us, the entire experience has been one of balance…managing the condition while living our lives…sharing information while giving comfort (and, perhaps, false assurances).
So much more that I would like to hear…so much more that needs to be said. Thank you again.
— Oscar
19. March 15, 2010
6:32 pm
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Speak for yourself. My mother was very brave to submit to surgery, rehab, chemo and a year of trying to survive and finally face death. She made this supreme effort at 86 as much for her children and grandchildren as for herself. No one will know whether the year she gained was worth her suffering and effort, but I admire her courage. The only word I have to describe her attitude was strength. I will be so lucky if I possess half of hers if my time comes.
— Spofford Torrington
20. March 15, 2010
6:48 pm
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In the last two years, I have had three close friends develop three different kinds of cancer. In all three cases, they wanted no words at all – at least related to health or cancer or treatment. They all said outright they wanted life to go on as it always had before. So I don’t ever ask “how are you feeling” or crap like that. But I do call for no reason to tell them of something funny or interesting that happened. And I spontaneously invite them over more often than before. Those kinds of words seem to work. … At least they do for me.
— Spencer
21. March 15, 2010
6:55 pm
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Cyber hugs Dana,your columns always bring me to tears,you have a lot of courage in both dealing with your cancer and writing about it so honestly,I’m sure you are helping many,many people.
— maureen
22. March 15, 2010
6:55 pm
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Dear Dana Jennings, Your columns about your experiences with cancer are some of the best writing on the topic I have ever seen. (I have quoted and passed on your piece about hot flashes to countless people–mostly husbands of my patients. It’s priceless!)
I’m so grateful to you.
— oncologyNP
23. March 15, 2010
6:55 pm
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So beautifully stated! I had the same thoughts & feelings when I was diagnosed with breast cancer: how could I go to war against my own body? I even refused to use the word “chemo,” which sounded toxic to me; I called it chemoTHERAPY.
The link below is an essay I wrote about cancer and language, published in “Pulse” magazine.
http://www.pulsemagazine.org/Archive_Index.cfm?content_id=45
— Elaine
24. March 15, 2010
6:55 pm
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it’s been 5 yrs since i was diagnosed w/ a brain tumor and still – when friends or family or other – have faced the trauma of cancer i find myself at a loss for words. there is a natural inclination for the uninitiated to ascribe some name for what it takes to stand in the face of approaching oblivion and far often than not what falls out is ‘bravery’, ’strength’, ‘battle’. I do not think all people say these things to be shallow or look no deeper into the experience but because they can not know (or rather do not yet know) what the concept of facing your death looks/feels like. my wife and i always use the metaphor of returning from an overseas war. only the people in battle can truly understand. for the rest, i’m a ‘brave soldier’
— Brian P
25. March 15, 2010
6:56 pm
Link
Thank you, Dana, for being able to put your thoughts and feelings into such exquisite form and then put them out here for the rest of us.
I have read your other articles on your experience, and think you and your ability to express is an absolute treasure. I appreciate the fact that you exist, think, feel, and then write about it. I am sorry that you went through this, but, it is the same fate which may await many of us, and we need to read, ponder, and try to learn from your words.
— Janet
Comment
My Mom died of lung cancer almost seven years ago. The process took 18 months and encompassed four course of chemotherapy. After four chemo series' she didnt see any improvement and neither did the doctor, so she just said, "Enough". Eacxh of those chemo treatments cost $1500 and more and although she had Medicare her copay was significant. She said, "I can use all the money I have saved all these years to get more chemo and maybe live one more year, winding up as a bag lady living under a bridge. Or I can quit and live the rest of my life as comfortably as possible until the end. I choose the latter." She was very brave the entire time and had most of her ducks in order by the end, financially and emotionally. I still miss her sometimes, when something important in my life happens and I want to call her and let her know.
Sunday, March 14, 2010
Breast Cancer Ballyhoo
March 12, 2010 Factcheck.org
This ad from Americans for Prosperity caught our eye because of the sheer number of falsehoods it hits on, both new ones and old faithfuls. The group, whose president helped organize the Tea Party protests, is spending $750,000 to run this very misleading ad in nine states.
In the ad, breast cancer survivor Tracy Walsh denounces new government guidelines on mammograms, which she says "[save] money, but could cost your life." She claims the "guidelines" say that "women shouldn’t receive mammograms until age 50." According to Walsh’s script, the guidelines were devised by a "government panel that didn’t include cancer experts," and if health care legislation is passed, such guidelines "could become the law for all kinds of diseases."
For starters, while the media tended to call the U.S. Preventive Services Task Force’s updated recommendations for cancer screening "guidelines," the word implies a degree of prescriptiveness that’s not really accurate. The task force issued recommendations, not rules, and they have been plenty controversial. In 2002, the group recommended mammograms every one to two years for women between ages 40 and 70. Last year, the panel said mammograms for women under age 50 should be an individual choice, and it recommended mammograms every two years for women over age 50.
The National Cancer Institute has announced intentions to evaluate the recommendations and possibly incorporate them into its own suggestions for cancer prevention, but the American Cancer Society has rejected the recommendations and so has the Susan G. Komen Foundation. Even the government, in the person of Health and Human Services Secretary Kathleen Sebelius, distanced itself from the recommendations and advised women to stay the course.
Sebelius: The [USPSTF] is an outside independent panel of doctors and scientists who make recommendations. They do not set federal policy and they don’t determine what services are covered by the federal government. … Mammograms have always been an important life-saving tool in the fight against breast cancer and they still are today.
Whether the task force is a "government panel" that does not include "cancer experts" is something of a matter of definition. It’s true that USPSTF is sponsored by the Agency for Healthcare Research and Quality, part of the Department of Health and Human Services, but its members are doctors and professors from the private sector. And it’s true that the panel is largely made up of primary care physicians, some of whom have a particular focus in preventive medicine, rather than oncologists. All members have either M.D.s or Ph.D.s in medicine; one has both. There’s one public health expert and two epidemiologists (doctors who study the spread of disease, including cancer). And the previous recommendations came from the same "government panel that didn’t include cancer experts."
The ad makes the new suggestions sound like a dramatic shift in direction, from recommending yearly mammograms to demanding no mammograms at all. That’s not the case. Even in its 2002 recommendations, USPSTF said that "the balance of benefits and potential harms of mammography improves with increasing age for women between the ages of 40 and 70," that "available trials also have not reported a clear advantage of annual mammography over biennial mammography" for women between ages 40 and 50, and that for women over 50 there’s still "little evidence" that it’s better to get a mammogram every year than every two years. A family history or other risk factors, the panel said, should strengthen the recommendation of routine mammography.
The 2009 recommendations, based on a review of existing cancer research, state that "[t]he decision to start regular, biennial screening mammography before the age of 50 years should be an individual one and take patient context into account, including the patient’s values regarding specific benefits and harms." That’s a C recommendation, meaning that "there is at least moderate certainty that the net benefit is small" and that the USPSTF suggests offering the service only if other factors support it. And it’s a far cry from saying that "women shouldn’t receive mammograms until age 50," as the ad claims.
Walsh says that "if I had followed the new government guidelines on mammograms, my cancer would have spread undetected." That’s not only misleading (the USPSTF recommendations aren’t "new government guidelines"), it’s flat-out false. As Walsh says in the ad, her mother died of breast cancer. In her case, even a doctor who was stringently following the USPSTF recommendations would have suggested mammograms at an earlier age. Walsh goes on to continue to imply that if the government had its way, women wouldn’t get treatment for breast cancer. That’s absurd. “If you find a lump, you could wait months for treatment and life-saving drugs can be restricted,” she says. Nowhere did the task force guidelines say that women who find lumps should be denied access to mammograms – on the contrary, it said that the decision to get mammography “should be an individual one and take patient context into account.”
As for breast cancer survival rates, early screening certainly improves those. What’s less clear is whether screening actually improves survival, versus improving the statistics we use to measure it. We’ve written about this a few times before — including in our analysis of a previous misleading ad featuring Walsh.
Walsh’s claim that survival rates for breast cancer are notably higher in the U.S. than in the E.U. is backed up by a study published in the medical journal Lancet, which showed five-year relative survival rates of 83.9 percent in the U.S. and 73.1 percent for the European average. Five-year relative survival rates show the number of cancer patients who are still alive five years after diagnosis, compared with how many people would be expected to be alive in a healthy population. That means that early detection will always improve the five-year relative survival rate — more patients will be alive five years after diagnosis if their cancer is caught early in its course, regardless of whether they ultimately die from the disease. Breast cancer mortality rates — the number of people who died from breast cancer within a given period — are remarkably similar in the U.S. and the U.K., which recommends mammograms every three years starting at age 50.
We talked to a number of experts for our previous article who said that mortality rates were a more accurate statistic for comparing disease outcomes of different countries. The USPSTF’s conclusion is that the improvement in breast cancer outcomes from yearly mammograms starting at age 40 doesn’t outweigh the potential harm associated with the test, mostly harm from potential false positives. Mortality rate comparisons back up that assessment, and survival rate comparisons don’t necessarily challenge it.
At any rate, the comparison with European health care is beside the point. Congress is not considering "government-run health care" or passing a bill in which "the government takes over your health care," as the ad puts it. As we’ve noted so many times recently, the legislation pending in Congress builds on our current system of private insurance. Most people would continue to get insurance through their employers, the way they do now, and others who buy individual private coverage would be able to do so through a new system that is likely to offer them more choices than they currently have.
Posted by Jess Henig on Friday, March 12, 2010 at 6:56 pm
Filed under The FactCheck Wire ·
This ad from Americans for Prosperity caught our eye because of the sheer number of falsehoods it hits on, both new ones and old faithfuls. The group, whose president helped organize the Tea Party protests, is spending $750,000 to run this very misleading ad in nine states.
In the ad, breast cancer survivor Tracy Walsh denounces new government guidelines on mammograms, which she says "[save] money, but could cost your life." She claims the "guidelines" say that "women shouldn’t receive mammograms until age 50." According to Walsh’s script, the guidelines were devised by a "government panel that didn’t include cancer experts," and if health care legislation is passed, such guidelines "could become the law for all kinds of diseases."
For starters, while the media tended to call the U.S. Preventive Services Task Force’s updated recommendations for cancer screening "guidelines," the word implies a degree of prescriptiveness that’s not really accurate. The task force issued recommendations, not rules, and they have been plenty controversial. In 2002, the group recommended mammograms every one to two years for women between ages 40 and 70. Last year, the panel said mammograms for women under age 50 should be an individual choice, and it recommended mammograms every two years for women over age 50.
The National Cancer Institute has announced intentions to evaluate the recommendations and possibly incorporate them into its own suggestions for cancer prevention, but the American Cancer Society has rejected the recommendations and so has the Susan G. Komen Foundation. Even the government, in the person of Health and Human Services Secretary Kathleen Sebelius, distanced itself from the recommendations and advised women to stay the course.
Sebelius: The [USPSTF] is an outside independent panel of doctors and scientists who make recommendations. They do not set federal policy and they don’t determine what services are covered by the federal government. … Mammograms have always been an important life-saving tool in the fight against breast cancer and they still are today.
Whether the task force is a "government panel" that does not include "cancer experts" is something of a matter of definition. It’s true that USPSTF is sponsored by the Agency for Healthcare Research and Quality, part of the Department of Health and Human Services, but its members are doctors and professors from the private sector. And it’s true that the panel is largely made up of primary care physicians, some of whom have a particular focus in preventive medicine, rather than oncologists. All members have either M.D.s or Ph.D.s in medicine; one has both. There’s one public health expert and two epidemiologists (doctors who study the spread of disease, including cancer). And the previous recommendations came from the same "government panel that didn’t include cancer experts."
The ad makes the new suggestions sound like a dramatic shift in direction, from recommending yearly mammograms to demanding no mammograms at all. That’s not the case. Even in its 2002 recommendations, USPSTF said that "the balance of benefits and potential harms of mammography improves with increasing age for women between the ages of 40 and 70," that "available trials also have not reported a clear advantage of annual mammography over biennial mammography" for women between ages 40 and 50, and that for women over 50 there’s still "little evidence" that it’s better to get a mammogram every year than every two years. A family history or other risk factors, the panel said, should strengthen the recommendation of routine mammography.
The 2009 recommendations, based on a review of existing cancer research, state that "[t]he decision to start regular, biennial screening mammography before the age of 50 years should be an individual one and take patient context into account, including the patient’s values regarding specific benefits and harms." That’s a C recommendation, meaning that "there is at least moderate certainty that the net benefit is small" and that the USPSTF suggests offering the service only if other factors support it. And it’s a far cry from saying that "women shouldn’t receive mammograms until age 50," as the ad claims.
Walsh says that "if I had followed the new government guidelines on mammograms, my cancer would have spread undetected." That’s not only misleading (the USPSTF recommendations aren’t "new government guidelines"), it’s flat-out false. As Walsh says in the ad, her mother died of breast cancer. In her case, even a doctor who was stringently following the USPSTF recommendations would have suggested mammograms at an earlier age. Walsh goes on to continue to imply that if the government had its way, women wouldn’t get treatment for breast cancer. That’s absurd. “If you find a lump, you could wait months for treatment and life-saving drugs can be restricted,” she says. Nowhere did the task force guidelines say that women who find lumps should be denied access to mammograms – on the contrary, it said that the decision to get mammography “should be an individual one and take patient context into account.”
As for breast cancer survival rates, early screening certainly improves those. What’s less clear is whether screening actually improves survival, versus improving the statistics we use to measure it. We’ve written about this a few times before — including in our analysis of a previous misleading ad featuring Walsh.
Walsh’s claim that survival rates for breast cancer are notably higher in the U.S. than in the E.U. is backed up by a study published in the medical journal Lancet, which showed five-year relative survival rates of 83.9 percent in the U.S. and 73.1 percent for the European average. Five-year relative survival rates show the number of cancer patients who are still alive five years after diagnosis, compared with how many people would be expected to be alive in a healthy population. That means that early detection will always improve the five-year relative survival rate — more patients will be alive five years after diagnosis if their cancer is caught early in its course, regardless of whether they ultimately die from the disease. Breast cancer mortality rates — the number of people who died from breast cancer within a given period — are remarkably similar in the U.S. and the U.K., which recommends mammograms every three years starting at age 50.
We talked to a number of experts for our previous article who said that mortality rates were a more accurate statistic for comparing disease outcomes of different countries. The USPSTF’s conclusion is that the improvement in breast cancer outcomes from yearly mammograms starting at age 40 doesn’t outweigh the potential harm associated with the test, mostly harm from potential false positives. Mortality rate comparisons back up that assessment, and survival rate comparisons don’t necessarily challenge it.
At any rate, the comparison with European health care is beside the point. Congress is not considering "government-run health care" or passing a bill in which "the government takes over your health care," as the ad puts it. As we’ve noted so many times recently, the legislation pending in Congress builds on our current system of private insurance. Most people would continue to get insurance through their employers, the way they do now, and others who buy individual private coverage would be able to do so through a new system that is likely to offer them more choices than they currently have.
Posted by Jess Henig on Friday, March 12, 2010 at 6:56 pm
Filed under The FactCheck Wire ·
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