How to Improve Survivorship Care: A Patient Advocate’s Prescription

The job of the oncology medical team is to put out the fire, stop the emergency, and save the patient’s life, said Diane Heditsian, Researcher and Patient Advocate, Breast Oncology Program, University of California, San Francisco, during the 2016 Cancer Survivorship Symposium.

“We’re doing a better and better job of that all the time,” said Ms Heditsian, a 2-time cancer survivor, “but we now owe it to the survivor to make sure that this saved life is a life worth living.”

Given that approximately 50% of all Americans will be cancer survivors at some point in their lives, survivorship care is an important topic; however, it is complicated because every patient with cancer is different, with a unique set of challenges.

“Consider the 75-year-old survivor who has cardiac issues because of his therapy, lives in the country, and can’t get to treatment, or the single mother who’s thrown into menopause from her treatment and is simultaneously struggling to pay her medical bills,” she said. “Put yourself in the orthopedic shoes of the retired school teacher with neuropathy who’s having real trouble walking.”

After her own active treatments ended, Ms Heditsian found it challenging to meet her survivorship needs, forcing her to change oncologists 6 times.

“When I finally got in to see my oncologist after being delayed for emergencies with active patients, I found that it was rushed, and the focus wasn’t always on me,” she said. “I finally realized that the problem wasn’t with the doctors, and it wasn’t with me having too many questions that needed answers; the problem was with the system.”

According to Ms Heditsian, it takes a group of providers to interact with the survivor. She now sees a primary care physician who is accessible, mindful of her health needs, and has a team to back him up.

“I actually do still see an oncologist,” she added, “but I’m not sure why.”

10 Simple Things to Improve Survivorship Care

Ms Heditsian shared the following list of suggestions for survivorship care:

  1. Treat the whole patient, not only the cancer. “It’s been said before, but it’s worth repeating. This should be the focus from day one”
  2. Share your personal stories with your patient. Research shows that the more personal you can make the recommendation, the more successful that behavior change will be in the patient
  3. Assess the patient’s needs. “This can be as simple as downloading a survey. There are many surveys on the Internet that you can give patients as they are moving toward the end of treatment”
  4. Use the American Society of Clinical Oncology survivorship materials with your patients. “This should be an opening to a conversation with the patient. Don’t just hand the materials to the patient”
  5. Be generous in making your referrals to other providers and to supportive care
  6. Get a prescription pad that says, “Walk 30 minutes each day,” and hand the prescriptions out liberally
  7. Take a mindfulness meditation course. You will personally benefit and then can sincerely endorse it for the patient
  8. Download a survivorship care plan, and use it with your patients
  9. Find a survivorship care evangelist; find someone in your practice who is particularly interested in survivorship—a physician assistant, a nurse practitioner, or a social worker—and start small. Just do 1 or 2 things
  10. Providers should reach out to a patient advocate for help: “We’re here to help in any way we can.”

Cancer Rehabilitation

The final day of active treatment can be one of the scariest days for cancer survivors, Ms Heditsian suggests. There’s no plan, no guidance on how to avoid recurrence, and no safety net. Patients need help getting their body back to restored health.”

She advocates for a 12-week comprehensive rehabilitation program for every cancer survivor at the end of active treatment. Then, survivors need follow-up for life: this should include patient education, empowerment, and reminders to take an active role in their health.

“This will engage the patient in her care, which is the only way we will get sustainable health,” said Ms Heditsian.

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