A version of this post also appeared on the End Well blog. This year I am honored to be an ePatient Ambassador for The End Well Symposium, taking place December 6, 2018, in San Fransisco, CA. It will be a “day of learning and connection as we engage with one another, across disciplines, to transform the end of life into a human-centered experience.”
On the day Senator John McCain passed away from brain cancer my boyfriend asked how I felt. “Alright, but a little numb,” I said. Living with a brain tumor since the age of twelve, I have met a lot of people dealing with this insidious disease. Many of these people — my friends — have passed. In those moments I cried, but McCain’s passing felt too distant, too dissimilar from my friends and me.
Then, on August 29th, the New York Times published “How McCain Got the Last Word Against Trump.” In this piece, they reported that Senator McCain began making extensive funeral plans shortly after finding out about his diagnosis. Upon reading this, I cried. I recently found out that my tumor has evolved into a more aggressive form — a grade III anaplastic oligodendroglioma. Tentacle-like, my as-of-now inoperable (read: terminal, unless new treatments are developed) tumor is weaving its way through the areas of my brain that control my right side. I cried because it was the first time I saw my twenty-seven-year-old self in McCain’s illness, his death, and his end-of-life planning.
I took issue with the title and subsequent angle of the New York Times piece because it misses a valuable lesson on the end-of-life experience. While I don’t know what Senator McCain intended — and I acknowledge that I’m seeing this through the lens of someone living with a brain tumor — I don’t believe Senator McCain’s funeral planning was solely a last-stand political maneuver. I think the requests he made were a means to end well and bring peace into the final chapter of his life.
I feel strongly about this because I, too, have written down my end-of-life wishes. As part of my narrative-like advanced directive, I shared my goals for a memorial service:
“If possible, try to do the memorial service outside. Maybe by the ocean, or at least somewhere serene. (I’m not picky.) Make the invitation open to everyone I have known and even those I may have not met in person. It would be amazing to have people from all the different parts of my journey come together and meet one another. For people I know from Indonesia, please consider using some of my savings to help them join the service if they wish to do so.
I’d love for my mom, brother, and sister to have the opportunity to speak if they want. I’d love for there to be LOTS of music (including songs from the places I’ve lived outside the U.S.). I’d love for there to be a slideshow, not with pictures of just me but pictures of all the people I’ve met.
I know it will be sad, but I want people to leave feeling like they’ve had a chance to hear what I’ve heard, seen what I’ve seen, and feel what I’ve felt in my life. Most importantly, I’d like the last song played to be “Love on Top” by Beyoncé. (And if you can get her to perform it in person, I’d die. Again.)”
From the New York Times piece, I learned that McCain was adamant about the music he wanted playing at his memorial service, just like me. McCain also wanted to use his funeral to express one of his most precious values: “There is more that unites us than separates us.” Similarly, I want my passing to bring all the people in my life together. As I read through this article, I kept finding these small but powerful similarities between my end-of-life care planning considerations and his.
What brought me to tears was when the Senator’s longtime friend, Mark Salter, stated that McCain’s overall message was: “It doesn’t have to be this shitty.” That may be the most poignant advice anyone, life-limiting illness or not, can receive. Death and end-of-life planning don’t have to be shitty, nor must these conversations be taboo. It doesn’t mean all hope is lost; rather, in having these discussions with those close to us, we can learn to live and pass in a way that matches our values. We can have peace and we can bring peace to those we love.
It may not have been his intent, but Senator McCain’s early funeral planning serves as an inspiration for how all of us should approach end-of-life experiences. As a medical student, I’m biased: I believe that medical practitioners need to create safe spaces and perhaps set a normative culture for people to have these conversations. Before this can happen, doctors, not just those in palliative care, need to have training on how to talk about death. They could take a lesson from Senator McCain.
I hope that McCain’s family has found some peace thanks to his end-of-life planning. I hope they know that, beyond all the political talk, there is at least one brain tumor patient, one young adult living with cancer, who is inspired by how Senator McCain handled his final moments. While I may not have the
resources or acclaim of a Senator, he taught me — us — how to end well.
Jeremy's Journey 