Chapter 48: End of life forms

 

Chapter 48: End of life forms:

When my parents visited early October, we learned about the promising MRI. They brought with them some paperwork for Washington. This was the end-of-life paperwork for physician assisted suicide for if/when I moved up to Seattle due to disease progression. I already had an appointment scheduled with the UW brain tumor center for December to establish with a physician so to make any transition between SLC and Seattle smooth. Dad starts explaining the forms as he pulls them out. I’m eager for the explanation to be done; I’m familiar with the forms from a patient care perspective, but it feels foreboding when relating to my own care.

              A couple of days after my parents leave, I take the forms out and begin filling them out. The top of the first form reads “Request for medication to end my life in a humane and dignified manner.” Time after time with patients I would think to myself, “this is the way to go. This is how I would want to go.” But somehow as I wrote my name on the form, it all just felt wrong. The reason I wanted death with dignity was to not entirely lose my mind before dying. I did not want to experience two deaths separately, of mind and self and then of body. I had seen this in the hospital. Patients would become vegetative or in incredible pain before a family member activated the death with dignity. In this way they did not achieve the goal I envisioned. What did all this mean? I would have to request while I remained clear of mind and sober with respect to disease. I needed to be fully aware of what I was doing. I would need to ask for death and then watch it enter my veins.

              A small piece of me wished for a different process: they leave the death drugs with the patient and could be administered by the patient at any time. It would become my responsibility and my action. The way things were, should there be any consciousness after death, I would go knowing that someone was paid under physician orders to kill me. And while this was the good and merciful thing to do and absolutely what I wanted; it cannot be an easy burden as a nurse administering the medications.

…

The next form I pulled out was the physician form for medications administered for the death with dignity. The first prompt read, “Lethal medications administered and dose.” Again, something about reading this gave me terrifying goosebumps: it was the word, “lethal.” Lethal is a violent and sinister word. It describes poisons and toxins and injuries. Global warming would be lethal, getting shot in the back was lethal. It was a word to describe people in bad positions or who had made poor choices. Or it described the murder of a prisoner under the death penalty. There were stories of prisoners being paralyzed without being sedated prior to the lethal drug. They apparently were not murdered and developed PTSD requiring intensive psychiatric treatment. They say the lethal drug burned through every vein and was the worst and most painful experience of their life. The administrators did not know it had not worked because of the paralysis. The paralysis is really for us. We want the death to look peaceful and humane, as though we’re still good despite legally murdering another person. Morality is not baked into the law, or even into the community. I didn’t think I would go here: there is no reason for the death penalty. I do not believe that the judicial system can reliably establish perfect Truth with a capitol T in sufficient quantities to justify ending a life that has historically represented the internal biases of the societal people and well-ingrained systemic racism and prejudice. It’s a cruel form of Hammurabian justice that we seem to have yet shaken off.

              The last form was the calmest: Power of Attorney. This would decide who made decisions on my behalf in the event I could not make my own decisions. Really, I was deciding the people who would say, “we should pull care and allow a natural death,” or “I think he might have a bit more in him, we should continue care for now.” I put my family down in the initial spots. The final spot was a difficult decision. I have so many amazing friends that I would trust to make that decision. Eventually I called Elizabeth and asked if she would do it. She knows me incredibly well and is one of my best friends. She’s also a phenomenal physician and carries many of the same views about death that I do. We had conversations previously about death too. And being in Portland she is a close drive away if necessary. She also has all the medical knowledge regarding the situation, and I know would make both an emotionally just and logical decision. I guess my only regret is that I felt I had so many options for that last person, even if it barely even matters, that it almost felt like I was leaving people out or judging the quality of friendships. This is certainly untrue in all possible ways.

              There it was. Legally I was prepared. I could ask for the lethal medicine, and someone could make the decisions I would want if I could not. As I signed, I felt a sense of closure and finality. It was as though I was physically marking the end of my own personal journey. There it was: I found a passion; I made music with some incredible people and had the pleasure in my youth to wake to piano music every morning, I embraced change and self-growth and improvement and made some of the most incredible friends one could ask for along the way. I fulfilled my dream of becoming a doctor and even got to go to my number one choice medical school. I learned much about science and life along the way. And I even got to practice as a doctor for almost a year, even with some weeks being half-time outpatient. And I moved somewhere entirely new and found innumerable reason to stay, even in the face of tragedy. If that doesn’t represent a life worth living, I’m not sure what does. Eventually I’ll have to say goodbye—And I hope with everything I am that that day is far far away, and that I can return to Doctorhood before then. We will see. Nonetheless, as I signed those forms it felt as though I was documenting the end of several journeys and pursuits and goals and hopes. I know that isn’t necessarily true, but it felt true.

              Death is not good without Dying well. I believe I am preparing to die well, however distant the date. Perhaps it will feel like being back in the Canyonlands: a spiritual reconnection of my atoms with the earth. Becoming once more a proverbial substance to start another life. And the consciousness, maybe it is related to the structure and characteristics of the individual atoms and their arrangement—a emergent property of a complex system. I hope this is true, like something magical happens when everything comes together in a supportive and beautiful way. And this way I could believe that parts of my consciousness may be saved as my atoms found a new home. I’ve talked about this before, but I plan to get a mushroom burial suit that decomposes your body back into the earth and helps detoxify elements that would be poisonous to the environment. No taking a portion of the earth’s space with me, no burning and throwing toxic chemicals into the air, no being covered in toxic embalming fluids or taking an expensive casket to lie useless in the earth, seeping toxic paint chemical into the soil. And I wouldn’t choose to donate my body for medical students to learn, because at the end the remains are burnt or buried. I would love to support the future of medical education, but not at the expense of the Earth to which I’m returning. Whatever funeral occurs, I insist that there is absolutely no religious influence whatsoever. If there is some sort of heaven that I end up in, I’m tossing the leaders or rulers down into hell for making me miss so much time with friends and family. Whoever that is, is not “perfectly good.”

              Since we’re on the topic, I would like my funeral to be fun… and make people pronounce it FUNeral. Maybe I’ll be up there in my mushroom suit surrounded by plants. Maybe I’ll arrange for psychedelic mushrooms to be passed out and then play some atmospheric music with a beautiful garden to walk through. The second thing I ask is that if there are any speeches that are read, do not be afraid to include plenty of roasts. I certainly deserve a good number of them.

              I talk to friends, and I know I’m not alone in these thoughts. What happens at the end; how and when? These are questions that scurry into the dark corners of our mind only to come out during the relative dimness of nighttime before bed. Questions that can be picked up and set back down again, and from which one has a break in the daylight. Perhaps we would all benefit from more engagement in these squirely uncomfortable questions. Perhaps mortality—a terminus—is what allows us to create meaning and direction out of the absurd—the conflict of a mind that searches for meaning in a world that objectively does not contain it. And in this way mortality is what allows life to be rich. I advocate for us all to be closer to our mortality—one commonality that links us all together.