Planning Julie’s funeral. That was the other thing I wanted to do in July 2018 when I told Julie that she was dying. I even brought along official Centre for Death and Society (CDAS) funeral planning worksheets to help facilitate the conversation, death professional that I am. At one point, after talking about dying, I asked her about a funeral and if she had any specific wishes. She dryly asked me if I ever stopped working and then said no, she did not have any specific requests.
Julie explained that she would be dead and didn’t really care because the funeral was for us. I made some quick notes and said okay. Then Julie said that she did have one request. She told me to make sure that no one turned her into some kind of hero during the funeral. She wanted people to remember her as a humble person, and what she was like in real life.
My sister truly resisted the epic hero narrative dropped on many people with cancer; she never felt heroic and would gladly choose the banality of everyday life over any glioblastoma multiforme–infused decline. Watching her transformed by both the cancer and its treatment made me tell my parents that I never wanted the devastating deterioration Julie experienced. If ever diagnosed with brain cancer (however unlikely) or any other form of cancer, I would seriously question whether or not to pursue aggressive treatment. My parents feel the same way. I am also aware that cancers differ widely from each other; so universally refusing all possible treatments does not make total sense. I say this in the event the Global Union of Concerned Oncologists decides to contact me.
But brain cancer is different. It just relentlessly destroys the person. One of the classes I teach at the University of Bath is a final-year option called The Sociology of Death, and every year when we discuss definitions of death and dying, I ask my students, Where is the person located—in the brain or in the heart? I thought about that question when I discussed funeral planning with my sister since “Julie, the person” we all knew was disappearing before our eyes. The funeral was not important for her, not really. It was important for all of us to remember her in the memories we made before cancer.
Then Julie said something else, and I will never forget this end-of-life moment with my sister. I cherish it. She told me that if anyone at the funeral did transform her into a hero that she would be standing at the back of the room watching us and be really pissed off. Then she started swearing, and by swearing I mean really swearing. My mental notes during that exchange clocked a laundry list of choice profanity that in the moment both startled me and made me smile. Julie was definitely still inside that brain. She understood what I asked about. She got it and answered honestly. At both services in Italy and Wisconsin I told everyone Julie’s one request: No hero talk.
Those unanswered CDAS funeral-planning sheets still sit in my journal as a reminder of things both accomplished and left undone before my sister died. CDAS developed the planning sheets over the years for use at academic conferences, at public engagement events, and in the classroom. I never expected to discuss those questions with my sister at that point in our lives, but that was also my own embarrassing death blind spot—any of us can die at any time. I grew up knowing this and regularly reminded people over the years that human mortality can quickly slip away. I earned a PhD saying these things. Talking about death and dying is literally my job. Julie and I certainly discussed and signed our parents’ end-of-life decision-making and power of attorney for health care paperwork in June 2014 when they brought us the documents, but we excluded ourselves from that conversation. We also discussed our parents’ funeral planning, which is an ever-evolving scenario but I think under control. I need to double-check. My Dad knows a guy.
So given everything that has happened to my own family, here are those Centre for Death and Society planning sheets, edited to include questions and considerations I know many people will confront when someone they know dies. Please add your own questions and concerns on anything you think is important. I decided to include the CDAS planning sheets for many reasons, but mostly because everyone should really think about all the questions they ask. Trust me when I say that most families do not discuss these points in advance. Funeral directors, hospice workers, bioethicists, and specialist palliative care doctors are often the worst offenders, which only makes a certain kind of ironic sense.
I also believe in paper-based funeral planning’s technological simplicity. Many companies now offer online services to manage end-of-life decisions and funeral planning, but I am skeptical that most of those companies will exist in ten or twenty years. The online environment in which they operate changes too quickly. Paper forms will last as long as they are safely maintained, for example, in a folder, ideally also scanned onto a device that then also needs maintaining over time (see how complicated this all becomes), but here is the key part: your next of kin must know where to find this information. At a minimum discuss your responses with the people responsible for making these wishes known. It is also important to have broader family discussions about death and dying before someone is incapacitated, on life support, and medical care decisions need to happen. That all occurs before the funeral service disagreements can even begin. If anyone asks why you are asking all these death and dying questions, tell them the Overlord of Death said to do it.
I also recommend writing answers in pencil, since people often change their minds over time. So, for example, it is not uncommon to start thinking that some resuscitation might actually be okay as a person gets older and maintains good health. Being sixty looks a lot different to a twenty-year-old than a fifty-five-year-old. But let me repeat: make sure another person knows what you are thinking and definitely seek legal counsel if you think you need something more binding than the closing pages of my book.
5/29/2019
Watching My Sister Die—The Last Page
The last page, little sister.
I’ve reached the last page for the book
you will never read
so I sat down on the couch in the house
the house you never saw
to say I’ve spent every day this year
thinking about your final year
About the pain
and holding your hand
Watching Mom and Dad put flowers on your grave
Putting a stone next to the flowers every time I visit.
And you’ll never read any of this little sister
I keep realizing this over and over
Every day as I ride my bike past Prometheus
wishing
That I didn’t know death so well.
But I do. I do.
So I watched you die little sister
saw you consumed by an unstoppable void.
Devouring you from the inside out
Even though the Doctors tried to save you like fire
from the Gods.
The last page, little sister. I am writing
the last page.