The shift from health care provider to health care recipient can occur at an alarming speed. An accident, a stroke or maybe a shadow on an imaging study. When I was 38 years old, I walked into my doctor's office a presumably healthy woman and left with a cancer diagnosis.
I don't remember a lot about how I got home. I know I drove myself home just as I drove myself to my appointment. I know there were many tears. The other details are blurred by shock and grief.
Later, I would reflect on the late novelist Susan Sontag's words when she wrote, "Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place."
Catapulted into the role of a patient, I soon learned that the great irony with cancer is that people often feel much better before their treatment begins than when it is over. Oncologists have to contend with the dual and opposing mandates to save lives and adhere to the Hippocratic Oath: "First, do no harm." While I am truly grateful to my oncology team, there is no doubt that when I finished my last chemotherapy session, I was a different woman than I had been a few months earlier.
I also had the opportunity to witness the amazing lack of rehabilitation services in the oncology health care continuum. Frail, bald, fatigued and in considerable pain, I asked my oncologist what to do next. He replied, "Go back to work." At first I was surprised. What about my rehabilitation? Then, I realized that this is the standard of care currently: find a suspicious lesion in an otherwise healthy person, work it up, if positive for malignancy then treat the patient, at the end of acute cancer treatment recommend minimal follow up primarily intervening for cancer recurrence issues. No rehabilitation.
I had no option but to rehabilitate myself. When I was strong enough, I wrote a book for cancer survivors titled After Cancer Treatment: Heal Faster, Better, Stronger. This book translated what I'd learned about rehabilitating myself into a self-help guide for other survivors who were struggling with the after-effects of cancer treatment.
Cancer Survivors: Lost in Transition
At the same time that I was writing this book, the Institute of Medicine (IOM) was investigating the issue of survivorship care and released a pivotal report titled From Cancer Patient to Cancer Survivor: Lost in Transition. The IOM report documented the many unmet needs of those who finish acute oncology treatment and then are left to struggle with a host of issues including the toxic side-effects of treatment that often leave survivors unnecessarily disabled or, at the very least, able to function but not at an optimal level. Indeed, pain, profound fatigue, deconditioning, loss of range of motion of joints due to surgery, chemotherapy and radiation treatments, and many other lingering side-effects of treatment can all be mitigated with interdisciplinary rehabilitation services, though few survivors get them.
The IOM report recommended creating cancer survivorship as a distinct phase of cancer care. One might assume that oncology rehabilitation would play a major role in this new phase of cancer care, though the report did not explicitly state this.
As I began to write and talk about the need for oncology rehabilitation in the cancer care continuum, I realized that there were two major barriers to overcome. The first was simply that health care providers in both the oncology and rehabilitation communities often did not understand the tremendous underserved needs of cancer survivors. Second, few clinicians had extensive experience in delivering oncology rehabilitation care to this population, leading to a lack of or poor implementation of services.
Cancer survivors make up a large population of patients with unmet rehabilitation needs. For example, in the United States there are twice as many cancer survivors as there are stroke survivors (over 12 million versus more than 6 million, respectively).
Despite the large number of cancer survivors-and the tremendous rehabilitation needs that many of them have-oncology rehabilitation is usually underdeveloped, even in comprehensive cancer and rehabilitation hospitals.
In fact, currently there are very few cancer centers or hospitals that offer oncology rehabilitation services, and those that do are generally fragmented and not well-executed with interdisciplinary teams. Indeed, even institutions that have a major commitment to creating survivorship services often leave out oncology rehabilitation when they put together survivorship programs.
Adding Oncology Rehabilitation to Survivorship Care
As I considered the current state of oncology rehabilitation-a critical but underdeveloped part of cancer care-I realized that in order to change this, it was important to address the two key barriers, education and implementation.
Educating health care providers and providing ways to both quickly and effectively implement oncology rehabilitation services were paramount to helping people diagnosed with cancer heal as well as possible and function optimally.
Though some people may consider cancer a "gift," I have a hard time viewing any illness in that way. Instead, I saw my own cancer diagnosis as an opportunity to try and make oncology rehabilitation the standard of care.
I formed a company called Oncology Rehab Partners (www.OncRehab.com). Its mission is to advance survivorship care with the STAR (Survivorship Training and Rehabilitation) Program and the STAR Clinician. The STAR Program is an institutional certification whereby an interdisciplinary staff is trained to deliver oncology rehabilitation services based on research and standardized tools and protocols. The STAR Clinician is an individual certification for eligible health care professionals who have completed an online training course in oncology rehabilitation.
The STAR Program and STAR Clinician help oncology and rehabilitation professionals work together toward the common goal of optimal patient care. Partnering with experts in rehabilitation medicine is critical to accomplishing the ultimate goal of making oncology rehabilitation the standard of care. These partnerships have had a profound and immediate impact on the way that cancer care is delivered.
Oncology Rehabilitation: The New Standard of Care
Though it may seem obvious to rehabilitation professionals, the following are actually revolutionary ideas at this point in time:
1. Every institution that provides comprehensive cancer services should offer oncology rehabilitation.
2. Every survivor care plan should address oncology rehabilitation so that patients know where they can find resources that will help them function at the highest possible level.
Johns Hopkins has adopted the STAR Program (see box) and physiatrist Sam Mayer, MD, is a vocal advocate of oncology rehabilitation. "I believe cancer care is a huge growth area for rehabilitation professionals. Cancer survivors search hard for ways to improve their quality of life, and who is better equipped than the rehab professional to help them?" he said.
Dr. Silver is a physical medicine and rehab specialist and professor at Harvard Medical School who specializes in cancer rehab. She's a well-known author and speaker, and a cancer survivor herself, who has written best-sellers and appeared on NBC's "Today Show."