We recently collaborated with the online patient community Smart Patients on an empathy-building program called #ColorectalCancer1day. Together we matched patients and caregivers affected by colorectal cancer (“teachers”) with researchers and clinicians from Kaiser Permanente who wanted to learn more about what one day with colorectal cancer feels like (“learners”). We’re now sharing the highlights from this learning experience with a broader audience.
A cancer diagnosis is never given to a single person – it’s given to a family. Often, family members are the primary means of support that balance out the mental and emotional struggles that come with battling cancer. But what of our #ColorectalCancer1day participants? Did our learners find a different perspective on colorectal cancer after further considering how siblings, spouses, parents, and caregivers may be called upon to support different aspects of cancer care like treatment, transportation, and empathy?
For Doug, a gastroenterologist, this exercise “provided perspectives on things we don't often think about in clinical medicine and opened my eyes to questions and concerns colorectal patients may have, and how to engage them (and their partners/families) in the full-life aspects of care and living post-cancer.”
Additionally, he recognized a tremendous opportunity for medical professionals. “A cancer diagnosis permanently changes your experiences and perceptions about yourself, even after the treatment period….It can be important to bring families into the discussions around these topics to develop appropriate expectations and support for all those involved.”
With that context, how do we care for caregivers? How do we provide support for the people who support us along challenging medical journeys? The role caregivers play is vital, and at Smart Patients we believe including them in our discussions will vastly improve and elevate healthcare conversations around the world. Indeed, our Caregiver Community is among the most vibrant and important at Smart Patients.
Our enthusiasm for supporting caregivers was echoed in the feedback from one of our teachers, Val, the wife of an 11 year colorectal cancer survivor and works for the Colon Cancer Alliance’s Patient and Family Support team, is a Certified Patient Navigator, and serves as their Volunteer Coordinator. who was partnered with Katie, a radiation oncologist at Kaiser Permanente. “[Initially,] I hoped [Katie] would gain the knowledge of what patients and caregivers go through day by day not only during treatment but years after, when there seems to be no end to the ongoing effects of treatment. I also hoped she would be able to see patients and caregivers as real people not a number, as unfortunately many patients feel to their doctors.”
By the end of their day together, Val felt confident her message was clearly understood. “This was a very cathartic exercise for me to be able to share my thoughts and my feelings as a caregiver. We live our lives for both of us when they are in treatment, we are the backbone that keeps this together, and to be given the opportunity to share – that was amazing.”
As we continue to evaluate and expand ideas like our #1day empathy exercises, caregiver perspectives continue to inform the work we do on a fundamental level. These conversations are more than a one-on-one dialog between a patient and their doctor. And as caregivers participate in these conversations, we must be cognizant of the emotional toll a diagnosis can have on not just the patient, but their network of caregivers. Because a diagnosis isn’t just given to a single person.