In this day and age, with excellent rehabilitation care available for nearly every injury or illness—no matter how serious—it’s hard to believe that there are millions of people who leave the acute medical system far worse off than they entered it, and aren’t routinely offered rehab. I’m talking about cancer survivors– a group of individuals known for their tremendous advocacy abilities. It’s no surprise that these folks are really starting to make noise about not receiving the care that they deserve. Care supported by research. Care that health insurance covers.
Who would be content living with the debilitating physical and emotional conditions caused by toxic treatments? Doesn’t it seem obvious that these patients should automatically have consultations with physiatrists (doctors who specialize in rehabilitation medicine) as well as other rehabilitation clinicians including physical, occupational and speech therapists?
Imagine this conversation coming from your doctor:
“Mrs. Jones, I am so sorry that you had a stroke last week that has left you in a lot of pain and having trouble with walking. However, we have an excellent yoga class at our hospital that will help you to feel better.”
Or,
“Mr. Rodriquez, your knee replacement surgery went well. I’m discharging you from the hospital but instead of physical therapy, we know a wonderful massage therapist you can see.”
Unheard of. Yet, this is the advice that many cancer survivors receive. It would be far below the usual standard of care to recommend yoga or massage instead of evidence-based rehabilitation services to a stroke or orthopedic patient, but for some reason many people think this is reasonable advice for cancer patients. It’s not. The point here is not to be dismissive of excellent complementary services such as yoga classes and massage therapy, but rather to point out that these are not substitutes for evidence-based cancer rehabilitation care offered by board certified and/or licensed healthcare professionals.
There are a lot of myths about why cancer rehabilitation services are only just now becoming a big issue in healthcare and why hospitals are scrambling to try and demonstrate that they offer this care. One of these myths is that, until recently, survival rates were not “good enough.” Not true. More than 30 years ago, the book “Crusade: The Official History of the American Cancer Society” was published and one of the chapters was titled “Halfway to Victory,” referring to the five-year survival rate, which, at the time, was approximately 50%. Clearly, the need for cancer rehabilitation services is not new. There have been a lot of survivors needing these services for many years.
Here’s what is really happening:
The American College of Surgeons’ Commission on Cancer (CoC) accredits more than 1400 healthcare facilities in the United States that deliver oncology services. There are new recommendations from the CoC that include offering every survivor a care plan by 2015. This is an important initiative, but of course a plan is only as good as the real services that it documents. As part of the current CoC accreditation process, hospitals and cancer centers must demonstrate they have “rehabilitation specialists” and offer rehabilitation services. This is a “top-down” push (or mandate) to implement cancer rehabilitation.
The “bottom up” push is from cancer survivors who are tired of being told to “accept a new normal.” Revisiting our imaginary stroke survivor patient, Mrs. Jones, consider this conversation:
“Mrs. Jones, I’m sorry that you had a stroke, but go home and try to feel better. Time will help. Then, you’ll need to accept a new normal.”
It would never take place. But this is currently what many cancer survivors are still being told.
The good news is that thanks to recent national mandates, as well as cancer survivors’ advocacy (top-down & bottom-up push), this is changing. Cancer rehabilitation is exploding. For example, in October, Rhode Island hospital administrators, doctors, nurses, physical therapists, and many others, with the support of RI Governor Lincoln Chafee, mounted a statewide initiative that will make quality cancer rehab services available to all survivors – wherever they live in the state – beginning in 2012.
So, here’s the newsflash for survivors and healthcare professionals:
What used to be acceptable – for cancer patients to be discharged from treatments without cancer rehab and encouraged to get on with their lives – is no longer considered the “standard of care.” Hospitals and cancer centers must now step up and offer cancer rehab in an evidence-based best practices model that includes well coordinated care from rehabilitation medicine professionals.
Julie Silver an assistant professor at Harvard Medical School in the Department of Physical Medicine and Rehabilitation and is the founder of Oncology Rehab Partners. She is author of You Can Heal Yourself.
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