If patients want to do advocacy work, what role do clinicians play? Before I had cancer, I had no idea.
My education in patient advocacy began the week of my diagnosis in 1990, when a newsletter from the National Coalition for Cancer Survivorship (NCCS) arrived in my mailbox. As both a patient and a physician, I was inspired by the founders' mission and the stories of ordinary folks who, after cancer, became patient advocates. Yet patient advocacy was not for me, since I planned to return to my practice full-time.
One month shy of my 2-year cancerversary, I attended the Annual Assembly of the NCCS. After listening to a panel on health care reform, I met panelist Ellen Stovall, not knowing she would become my North Star of advocacy. Ellen, a long-term survivor of two bouts of Hodgkins, had been transformed from a housewife with no skills in politics or public speaking into a seasoned presenter about to assume a national leadership role in survivorship.
Ellen and I bonded over our shared experiences of receiving superb medical care, raising babies while dealing with lymphoma, and wanting to—more accurately, compelled to—help other patients. Ellen had chosen advocacy, namely, bringing attention to deficiencies in patient care. I'd chosen writing, and not advocating. Or so I thought.
Ellen taught me two essential truths: First, every effort that helps patients to receive quality care is advocacy, whether it's working full-time as a patient navigator or selling Lemonade for Lymphoma one sunny afternoon. Second, every effort matters. That outlook, plus Ellen's infectious determination to make things better for all cancer patients, gave new meaning to my nascent writings on survivorship and hooked me on advocacy.
I experienced how advocacy work can be healing for patients. Beyond feeling good by doing good, advocacy work distracted me from my persistent leg pain, helped me escape the self-absorption of illness, and fostered a renewed sense of wholeness. Living in the cancer-world of heightened uncertainty, advocacy weaved a raft of hope for a better tomorrow. Through the ups and downs, it provided a meaningful way to express gratitude for my care and fulfilled my sense of obligation to my survivorship.
Unfortunately the benefits of advocacy can obscure the risks. Patients who put their heart and soul into advocacy may unwittingly neglect personal issues that need attention. Patients who become intoxicated by the nobility and camaraderie of advocacy, or energized by others' praise, may misjudge the drain on their physical and emotional reserves.
On the home front, conflict may arise if family members try to dissuade patients from doing advocacy, fearful it's too taxing, especially if their loved one is in treatment. Even if patients are obviously energized and happiest when doing advocacy work, family members may resent advocacy as a mistress stealing family time or a tyrant forcing them to hear more about cancer than they have to—more than they can stand.
For patients who achieve a lasting remission or cure, advocacy work may lose its healing potential over time. Patients may feel stuck, unable to stop without disappointing their co-advocates or feeling guilty about abandoning the mission.
As clinicians, you can help in practical ways. If patients express interest in advocacy, you can:
- Validate the value of advocacy. This strengthens clinician-patient bonds by nurturing a goal beyond patients' medical care. It reassures patients that you see the person beyond the disease.
- Clarify the medical risks. Urge patients to make informed, healthy decisions about their advocacy work, just as they would about diet and exercise (for example, getting adequate rest and avoiding crowds when neutropenic). Encourage patients to find activities that both respect their limits and satisfy their desire to advocate.
- Redefine advocacy. Help patients see that advocacy includes everyday gestures, such as talking with a newly diagnosed neighbor or commenting on a health blog. This broadened perspective mitigates patients' sense of loss if they have to let go of formal advocacy activities, now or later.
- Create space to leave advocacy. Advocacy is not for everyone. At times, the best path to physical, emotional and spiritual health is letting go of advocacy work.
As clinicians, you have the power to promote patient advocacy on a grand scale, too. If nothing else, just keep providing expert and compassionate care. Your care will shape your patients' stories that, like pebbles in a pond, send waves of high expectations for excellent care, expectations that exert pressure to make improvements everywhere.
Institutional or organizational meetings offer another setting for promoting patient advocacy. Wherever decisions are being made, you can question the impact of each option on patient care. You can give voice to core values, with patient welfare the top priority. I know your words may seem to fall on deaf ears, so let me share a bit more about my friend, Ellen.
Ellen dreamed of the day when all patients would have access to excellent cancer care. In the years since our first meeting, Ellen became a patient advocate extraordinaire, relentless and productive on the national stage, as shown in the short NCCS video, “One Person Can Make a Difference” (www.tinyurl.com/EllenStovall). In recent years, she continued her advocacy work despite chronic pain and heart problems. Neither her full knowledge of the statistics for patients like her or the wrenching loss of one co-survivor after another deterred Ellen from using her borrowed time to help others. She kept trying until, six days into 2016, she died of cardiac complications of her curative therapies (OT 2/10/16 issue).
The oncology world has lost a hero. Let's honor Ellen's memory and continue her legacy by supporting patients who want to become patient advocates and by working as patient advocates in everything we do.