It’s About a Patient’s Rights


CbPart of my job here at the LIVESTRONG Foundation is monitoring Social Media for relevant stories that impact the cancer community. It didn?t take long to notice the commotion regarding Lisa Bonchek Adams? Twitter / blogging of her cancer experience, and the recent questioning of her doing this, especially in the later stages of her disease.

For me, this discussion gets right down to the very heart of what it means to have cancer. It?s your disease, and your choice in how you will experience it.

Some people, myself included, jump right into the deep end, doing things like becoming well-informed patients, sharing their stories online and in other media, and joining advocacy groups in the fight against this disease. Others, like my brother, take a more moderate approach. He chose to do everything he could from a treatment standpoint, and then once that part was over, looked for ways to give back on a smaller scale, such as fundraising for us through our LIVESTRONG Challenge. And then there are others who simply want to get better and get on with their lives, however that is defined after treatment.

And it?s all OK.

The many difficult decisions we have to make as we run the cancer gamut do not define our value within the cancer community or society in general. A person like Lisa who chooses to share her story publicly is not better, nor worse, than someone who ?just? gets treatment and rejoins their family and friends.


But there?s also another side to this coin, and that has to do with the medical decisions we have to make, and what impact that has as to how we are viewed / judged, especially by those who have not yet walked to the edge and looked over.

Here at the LIVESTRONG Foundation even we use phrases like, ?Fight like hell,? and ?Unity is strength, knowledge is power, and attitude is everything.?  And while hopefully inspirational, the reality of the situation is that the choices we must make can range from a number of treatment options including clinical trials, complementary alternative medicine, and palliative care. When it comes to palliative care, this concept is often less well understood, and people who go this route can also suffer stigma from being seen as not doing enough ? that?s wrong.

Palliative care and hospice (or end-of-life care) were viewed hand in hand for a long time, but palliative care is not just the relieving of symptoms and problems at life?s end, it is relevant at any stage of a life altering disease. This growing field is becoming more about quality of life. Palliative care can address things like pain and nausea management during active treatment, but it can also be the choice to enhance the quality of your life for whatever time you have left, either in a chronic or terminal situation. The decision to choose this route is no less a valid path than signing up for a Phase 1 Clinical Trial or trying a new surgical technique.

The LIVESTRONG Foundation has invested in the promotion and adoption of palliative care as a viable, patient-centered treatment option, as evidenced by our support of Mt. Sinai through our Community Impact Project  to expand palliative-care accreditation across US hospitals (~$500K). And we’ve also funded the University of Wisconsin to evaluate US and global policies regarding access to pain medications for cancer ($3M over 10 years).

As we strive forward to help define and refine the concept of patient-centered care, this discussion is very relevant. That?s because the patient is at the very heart of the process, and so how he or she is viewed ? whether by the lifestyle or medical choices they make ? can have an impact on the care they receive and their place in society. We believe that patients have the right to make these choices and that this not only should be respected, it must be.

Chris Brewer is a 17-year testicular cancer survivor, lost his brother Robin 7 years ago to stomach cancer, co-founded the Testicular Cancer Resource Center, and is Deputy Director, External Affairs here at the LIVESTRONG Foundation.



  1. J_Lind says:

    My observations will be a bit more strident . . .
    I’m disturbed by the New York Times op-ed piece by Bill Keller. Without considering what precipitated it, the piece comes across as unbridled criticism of Lisa Adams’ choices, both in candidly discussing her disease publicly using Twitter and her blog, and in her medical treatment. One wonders why he would choose to bash a woman with Stage IV metastatic breast cancer in such a manner, especially when she has no significant fame or notoriety to maker her newsworthy. The motive is revealed when one discovers that it came on the heels of Bill Keller’s wife, Emma, publishing her own version of an “op-ed” piece about Lisa Adams on the (UK newspaper) The Guardian’s USA web site a number of days earlier. It was also critical of Adams, with headline, sub-heading and self-centered content that were, at best, exceptionally callous resulting in an international backlash. Both pieces also contain substantial mischaracterizations and factual inaccuracies. The editorial posting by Emma on The Guardian has since been pulled by its editor, and IMO rightfully so. Its incredibly cruel tenor and content were entirely inappropriate.

    In light of The Guardian?s events with Emma Keller?s article immediately preceding her husband, Bill Keller, using his former position as an executive editor of the New York Times to publish an op-ed piece there, his actions reek of continuing the public bullying his wife started that was squelched, albeit his words and phrases are less graphic and more restrained than hers. Nevertheless, it’s still utterly inappropriate as he quite publicly questions and criticizes her personal choice to continue treating her cancer. It becomes clear by the end that in his opinion, she should just curl up in a dark corner and quietly die, as his father-in-law did. According to him, it’s the one and only true path of courage and grace. The implication is she (Lisa Adams) lacks real courage (or grace) by choosing to continue treatment. Is he trying to validate his father-in-law’s choices by accusing those who choose differently of making the wrong ones? On what grounds? Pragmatic? Economic? Ethical? Moral? Religious? To publish this very publicly in a major newspaper is unconscionable. He’s playing a very personal “zero-sum game” very publicly (zero-sum: “I can win only if you lose”). One can also very legitimately wonder if it’s in retribution for the backlash his wife Emma suffered, including The Guardian taking down her piece about Lisa Adams. Furthermore, he accuses the entire US medical community of blindly pursuing “heroic measures” wholesale without considering whether or not they could succeed, or the patient’s wishes. That’s simply not true, not among the very geographically widespread medical community that has treated me for the past 45 years. Ultimately the medical community is bound to follow a patient’s wishes provided they?re not illegal. If the patient chooses to continue pursuing treatment, including using heroic measures, that is what they will do.

    It’s clear to me Bill Keller has _never_ been to the very edge of the abyss trying to maintain balance with one foot over the chasm and the other on a banana peel. He’s only watched others at the edge. His wife had a double mastectomy and reconstructive surgery for DCIS in one breast; no chemo or radiotherapy. She characterized her disease as “My 40-day breast cancer” (per her own June 2012 blog article of the same title). She describes it as “brutal.” I won?t dispute that. It most certainly was, but not nearly as brutal as it could have been had she also undergone chemotherapy and radiotherapy, including having to deal with life-long permanent side effects from them afterward. It wasn’t the Stage IV abyss Lisa Adams is currently staring into with the knowledge she will eventually fall in. Bill?s father-in-law succumbed to cancer in the UK, choosing to cease treatment when it became terminal. Presumably his end stage was seen mostly from a distance across the Atlantic. I sincerely hope Emma Keller is never faced with recurrence, relapse or late metastases appearing and that Bill Keller never personally experiences any form of cancer.

    Watching someone at the edge of the abyss is _not_ the same as being at the edge, even if you’re the primary caregiver. I’ve been both, first as the primary caregiver for my father with the renal cell carcinoma that claimed his life 30 years ago, and then 4 years ago with my own Stage IV head/neck squamous cell carcinoma. I didn’t challenge my father’s decisions about his medical treatment or how he chose to settle his affairs after he knew his days and weeks were numbered. My task was to facilitate gathering what he needed to make his decisions and assist in carrying them out. In retrospect, thinking back to his ordeal, I might have chosen a different treatment path but they weren’t my decisions to make. Second-guessing what his outcome may have been pursuing different options 3 decades ago is fruitless. Just as I was bound to respect them then I continue to respect them now. It was his journey, not mine. Emma and Bill Keller have the unmitigated gall to very publicly criticize, without any empathy or any visible purpose beyond their own self-centered egos and motives, the choices being made by a person whose path they have not walked, hopefully never will, and how she has shared her cancer experiences so that others can know the breadth and depth of the ordeal many cancer patients endure.

    The most irritating thing for me during my diagnosis and treatment was dealing with unrequested and unwanted advice about treatment decisions from others beyond my team of physicians and their staff. Fortunately it did not occur often, the few instances being generally passive and deflected without much difficulty. It was a “hot button” though as it was my disease, my bleak prognosis, my life, and quite likely my death. I was determined to unequivocally own that and have it on my terms. Among acquaintances, work associates, friends and family it was generally respected. The most galling however, was receiving periodic mailings from the medical section of my employer’s benefits center and my medical insurance company after the claims started flowing into them. I very clearly had a serious advanced cancer just by the nature of the claims. These mailings were 4-color glossy trifold and similar materials citing all the difficult and confusing decisions I must be faced with that undoubtedly contained incomprehensible medical jargon. The added high stress of crucial decisions regarding treatment and its potential options was not something I needed to bear. They would gladly provide “second opinions” about everything if I would release _all_ my medical records to them for review by their medical staff and be willing to follow their recommendations. The best news about this (repeated) offer was no office visits were required. They could do it using only my records. Eventually going a step further, they were also willing to take on making all the medical decisions for me with their panel of “experts” and relieve me of the undoubtedly immense psychological burden and stress that must be continuing to mount. I’m mystified why they would think me so naive or stupid not to see through this. For all my company does to hire the very best and brightest people (they do an excellent job of it), the benefits office and medical insurance company insults our intelligence with this kind of stuff.

    That is another level of what bothers me about Bill Keller’s op-ed piece and its public criticism of Lisa Adams’ choosing to continue treatment. It’s a slippery slope from what Bill Keller wrote regarding how people should willingly choose to “go quietly with courage and grace” to what my company’s medical benefits and medical insurance people ultimately wanted from me: authority to make all my medical decisions so they could aggressively contain the cost. You’ll never, ever convince me the medical insurance company wanted to work for _my_ best interest” to maximize _my_ probability of survival. I was just a policy number paying premiums that suddenly became a tiny fraction of my treatment cost claims. That’s what triggered their repeated offers to _help_ me. The insurance company’s _only_ interest is minimizing claims to maximize profit, and doing so just a half-step shy of not being able to prevail in any ensuing coverage denial litigation. It would have been immensely less costly to them if I’d chosen the Bill Keller “quiet exit.” And people accuse Obamacare of wanting to establish “death panels?” The ugly reality is these panels already exist, but not within any government entity. They’re within the medical insurance companies actively seeking legal ways to contain cost, without regard to whether it’s in a patient’s best interest in trying to survive a costly disease. I can only imagine how much they’re celebrating Bill Keller’s op-ed article that openly encourages advanced stage cancer patients to ?do the right thing? and opt out of any further treatment. This is why it’s imperative the patient _must_ have the right to make their own treatment choices, including if and when to cease treating the disease. It goes beyond withholding public and private criticism of others? very personal decisions to grant them the courtesy of dignity and respect they deserve. It includes freeing cancer patients from the likes of what I experienced with my medical insurance company insidiously and repeatedly attempting to persuade me to let them take control and make all the decisions for me based on what would optimize their economic outcome, not my medical outcome.

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