by Chris Brewer
Part 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.