Editor’s Note: The complexity of the American healthcare system is difficult for patients, families and consumers to understand. It also frustrates clinicians and increases the risk that something will go wrong in the course of care.
For those in need of care or simply trying to manage routine needs, such as ongoing medications, the system is often opaque and confusing. In this week’s encore post, Renata Louwers describes how hard she had to work to learn how to manage her husband’s care. She recalls, “No one seemed to notice how hard it was for us to navigate the system.” Now she helps others navigate when they, their family members or friends need medical attention.
We usually think of patient engagement in the context of patients and families in the immediate experience of care. Perhaps we all need to begin thinking this way earlier, before we need care. Perhaps we, as a country, should think more about making the system more comprehensible and adding information about how the system works to health education at all ages. Perhaps the growing focus on patient engagement will lead eventually to simplifying the system. Meanwhile, patients and families will continue to need to do the work that Renata models so expertly in her post.
Patients and Caregivers Engage Without Calling It ‘Patient Engagement’
By Renata Louwers
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. I have also 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.
Renata Louwers is a writer and a volunteer patient advocate with the Bladder Cancer Advocacy Network (BCAN). She is a co-founder of the digital literary journal www.monthstoyears.org.
