My neuro-oncologist is talking about palliative care, and I could not be more excited
By Charlie Blotner, brain tumor patient and advocate
Palliative care can and should be proactive, but so often it seems like it’s a reactive, second thought for people with brain cancer. The question is: Why?
On Feb. 5, 2018, a gaggle of folks got together for the first-ever in-person Brain Cancer Quality of Life Collaborative meeting in Sacramento, California. They hailed from all over the country to share their insights and their ideas, sacrificing their time, and giving their energy to one of the most important and underexplored needs of our community. Video meetings for this project started in December, and now, the project stakeholders have finally gathered in one room to design the ultimate comparative effectiveness research question.
This is patient-led, caregiver-informed, in search of community answers and evidence-based research, and I could not be more excited.
After receiving a diagnosis, the average lifespan of someone with glioblastoma is 15 months with treatment, and somehow, even though we know this is a lethal disease, 97% of people with brain cancer receive 21 days or less of hospice care before dying. That’s nuts! This team of top notch patients, caregivers, and neuro-oncology and palliative care clinicians were awarded a PCORI Pipeline to Proposal grant to find out why.
Here’s what this project means to me…
I’ve come to understand more of what it means to die from brain cancer this past year, through curious conversations with Brain Cancer Quality of Life Collaborative team members Michael Fratkin, MD, Adam Hayden, and Liz Salmi. It’s because of these conversations that I’ve also come to better understand what it will mean for me to live.
My perspective in these conversations is one of someone navigating the world five plus years after a total gross resection for a low grade glioma, someone with minimal physical and cognitive side effects, and someone with a social work lens listening to learn how to address the barriers members of my community may need help with when accessing palliative care services.
In order to have honest conversations about palliative care and, at times, end-of-life planning within my community, my own healthcare conversations need to be open and honest.
My neuro-oncologist is part of the team
I just this week learned a new term that reflects this sentiment from another member of this project team, Lynne Taylor, MD, who also happens to be my neuro-oncologist. The sentiment she explained this week was, “Folie à deux is the ‘Folly of the two,’ where the doctor and patient tell each other everything is going well….but it isn’t.”
That is actually Folie à deux, the “Folly of the two” where the doctor and patient tell each other everything is going well….but it isn’t.#btsmqol
— Lynne P.Taylor, M.D. (@neulpt) February 6, 2018
Managing my care with her help means being forthcoming about my thoughts, feelings, concerns, and any surrounding stigma. It’s only through these straightforward conversations that we can best balance what I need as a patient, and effectively use her knowledge and role in my care as a provider. Looking ahead though, I have concerns for the rest of my community, especially for my community members who don’t have low grade gliomas.
Glioblastoma is a lethal disease, with an average survival time after diagnosis being 15 months. While low grade gliomas may have a more favorable survival time in years or decades depending on tumor type and genetic mutation, patients oftentimes are still left wondering what their future will look like, and what is possible or even a logistically sound decision when planning ahead. Educational attainment, family planning, budgeting and savings, navigating relationships, careers, etc. – all aspects of quality of life in their own rights – change when you know or worry about a limited, or an adjusted timeline with speed bumps along the way.
One day, my quality of life will be on the line at my end of life. The reason for it might not be for a recurrence of my brain tumor, but if it is, I want to know that I, those close to me, and my care team will have done everything in our power to have made sure that others and myself know what services are available, and how to access them.
Here’s the thing: It’s rare that a patient-led research project gets funded. It’s rare that patients have the time, energy, or institutional support like this project does to even reach this point in the process. But, this project has. This is patient-led, caregiver-informed, in search of community answers and evidence-based research, and I could not be more excited.
Charlie Blotner is a graduate student at the University of Washington School of Social Work, and is enjoying all that life with stable scans has to offer five plus years post resection of a grade II astrocytoma. He’s interested in improving the psychosocial supports available to those with chronic illnesses, especially adolescents and those facing the end of life. Charlie donated pictures of his brain scans for this website. Follow Charlie on Twitter and learn how to participate in #BTSM (Brain Tumor Social Media) chats at @CBlotner_.