Cancer rehab dramatically improves cancer care

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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  • http://twitter.com/ptdan23 Dan Curtis

    As a PT I have had the experience of treating cancer survivors many months or years after surgery, chemo and/or radiation after being told by one or more physicians that there was nothing else that could help them.  In my experience the patient often gets advice from a fellow survivor who had PT that they should go.  Delays in receiving appropriate treatment from a physical therapist causes further disability and suffering that these patients should not have to endure had their physician thought about, now that the cancer is gone, this person has to function.  The best healthcare provider for these patients to be referred to is a physical therapist.  I think your article was very well written and I applaud you for writing it.
    Dan Curtis, PT, DPT, MTC

  • Rolf Olsen

    On January 8, 2010, it will be ten years since my wife was
    discharged from her rigorous four-plus month program of radiation and chemo to
    treat her tonsilar cancer (squamous cell carcinoma).  I was her active caregiver.  Both of us recall the feeling that after
    months of seeing doctors and nurses almost every weekday, we were suddenly
    quite alone.  In addition to recovering
    physically from the devastating effects of radiation and toxic chemicals, she
    needed to wean herself from the high doses of fentanyl and roxicodone that she’d
    taken for months. It’s certainly possible that both of us missed some important
    information, but neither of us was prepared for the dark depression into which
    she descended.  Clearly this was in part
    due to withdrawal from the narcotics, but we believe it was partly due to the
    sudden loss of a human support system.  I’ve
    told some people that it seemed very much like when we were sent home with our
    first child – for a few days you’re cared for around the clock, and then
    suddenly you’re on your own.  But
    post-cancer treatment was, of course, so much worse.  And interestingly, even though we were cared
    for in a well regarded NCI cancer center, there was no existing support group
    for head and neck cancer patients, despite the fact that the life changes that
    they experience are well known.  We were
    instrumental in getting such a group started and continue participating to this
    day.

     

    So, yes, call it “cancer rehab” or whatever you want, but
    please do establish post-treatment programs for cancer patients of all types! 

  • http://pulse.yahoo.com/_GJCNF5QLKW7ROYAZZGB7HFH57Y jamesp

    Too bad Gov. Chafee (and many other leaders) lack the courage to add cannabis to the list of legal treatment options for cancer patients.

  • http://www.facebook.com/people/Rebecca-Warner-Trono/506025779 Rebecca Warner Trono

    Wonderful article! Here in Vermont, Fletcher Allen Healthcare has just begun a program called, “Steps to Wellness”, which is a 12-week exercise program tailored to cancer patients to help them recover from treatment,  regain their strength, stability, endurance and vitality. Although this program was only begun in October, the results have been wonderful. Patients say they are trusting their bodies again and they feel that they’re getting their lives back. The supportive environment has been tremendous, and for some it’s worked better for them than the cancer support groups available. The patients come in frightened, unsure whether they can participate, and self-conscious. With a session or two, they’re smiling, laughing, excited to be there. Miraculous! Two other facilities in the area have also begun similar programs. It’s long past time for these kinds of opportunities for healing to be available, but happily, they’re coming on fast and strong!

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