Patients and Caregivers Engage Without Calling It ‘Patient Engagement’

In 2013, before I’d ever heard of “patient engagement,”  I spent many days at doctor’s offices, hospitals, chemo infusion suites, in ambulances, and with visiting nurses in our home. My first husband, Ahmad, had Stage IV bladder cancer, and we spent a draining 11 months in a desperate quest to save his life.

I observed that the American healthcare system is populated with hard-working and well-intentioned employees. Nonetheless, patients and families often feel adrift in a giant bureaucracy.

I can say with certainty that I was a thorn in the side of many a floor nurse and receptionist. Ahmad lobbied his first oncologist for better and more specific pain relief when the opioid combination prescribed was insufficient. We repeatedly requested access to palliative care before we were referred. I explained over and over again to the pharmacy why I was continually filling opioid prescriptions.

I learned to give injections and manage dietary restrictions for warfarin. I served as the translator/liaison when an aide in our home could not understand Ahmad’s accent and he couldn’t understand hers. I contacted the doctor directly when a nurse forgot to include the antinausea drug in the chemo infusion. Ahmad and I pored over clinical trial options so we could ask informed questions.

Since Ahmad’s life was hanging in the balance, we quickly became “engaged patients,” even if we didn’t recognize it at the time.

I often felt it took extraordinary effort to persistently pay attention and follow up. This amount of work, coupled with the emotional weight of a terminal prognosis, challenges the strongest among us. And I wondered why it felt like so much work was outsourced to the patient and family. I also wondered why no one talked about any of this. No TV news stories, no articles. We couldn’t be the only people experiencing this. The world thrummed on as we, and so many others, drifted through cancer in an alternate universe. No one seemed to notice how hard it was for us to navigate the system.

Ahmad did not survive his cancer, dying 11 months after the Stage IV diagnosis. I felt strongly that I wanted to help other families who faced similarly grueling circumstances as they tried to navigate the system to save someone’s life.

I volunteered as a patient advocate and have twice attended the American Society of Clinical Oncologists (ASCO) conference. I have spoken at and attended the Bladder Cancer Think Tank sponsored by the Bladder Cancer Advocacy Network (BCAN). I co-moderate an Answer Cancer Foundation online support group for advanced cancer caregivers. I am a patient/caregiver consultant on a bladder cancer specific grant application to engage patients. I spoke at the Stanford MedX ED conference in April 2017, a conference dedicated to bringing the patient and caregiver voice into medical education. Earlier this month, I attended the larger annual Stanford MedX conference as an ePatient on the “Design Track.” I plan to spend a day at the legendary design firm, IDEO, brainstorming with designers and others about how the healthcare system could better support and empower patients.

When I was in the trenches of cancer, I had no idea this world of “ patient engagement” existed. I think that is true for most patients and families. Isolation and a sense of fending for yourself is the predominant feeling of navigating the system when facing a serious illness.

Patients and caregivers “engage” out of sheer necessity: To get what they need. Bringing the broader concept of patient engagement to fruition (in research design and healthcare systems design, for instance) will require letting patients and caregivers know they are welcomed. And letting them know that someone wants to hear about their experiences and opinions.