So far I've managed to tell my story while ignoring the elephant in the room: death. In March of this year I was diagnosed with an incurable brain cancer known as "glioblastoma." It's terminal, meaning I'll die from it unless something else kills me first. It's also highly aggressive, meaning it will probably kill me sooner rather than later.
I've been treated with the standard of care. Although I found those administering the treatments to be highly-trained, intelligent, hard-working, and dedicated individuals, it won't be nearly enough to keep me alive. Glioblastoma isn't the kind of cancer you "beat." It's the kind of cancer that kills you. Fortunately, there aren't many of those left. But I feel compelled to bring this up anyway. Some people I speak with hear the word "cancer" and then proceed to tell me about people they know who have fought (and even beaten) other forms of cancer. This tells me that the person doesn't understand glioblastoma, which has little in common with the kinds of cancer people survive. Here are some of the main differences:
- Glioblastoma attacks the brain, the seat of intelligence, consciousness, personality, memory, bodily control, and everything else that makes us who we are.
- Glioblastoma aggressively infiltrates healthy brain tissue, making it impossible to fully remove surgically or radiologically without causing permanent disability or death. There is no such thing as a "clean margin," just "maximal safe resection."
- Individual glioblastoma tumors are notorious for their genetic heterogeneity. Each one is a dog's breakfast of corrupted, furiously dividing cells. Chemotherapies are impotent under these conditions.
- There are few known risk factors, so there are no screens or genetic tests. If you do manage to catch glioblastoma early, it's dumb luck. By the time you're treated the disease has typically been raging for some time and the tumor is enormous.
- The brain is an organ that is, uniquely, encased in bone. This jacks up the risk and cost of every intervention and diagnostic.
Median survival for glioblastoma patients post-diagnosis is measured in months. You will see the odd ten-year glioblastoma survivor, but they might as well be unicorns. They get regularly trotted out by cancer centers and featured in slickly-produced promotional videos. Without bold disclaimers, this practice is misleading at best in my view. My benchmark is that if it isn't obvious exactly how many brain surgeries this long-timer has undergone, someone is trying to manipulate me. And that number better be more than one.
But accelerated death is only part of the problem. The real problem is all that a patient will lose along the newly short but certain path to death. The ability to make decisions. The ability to see and hear. The ability to control bowels and bladder. The ability to speak and comprehend language. The ability to eat and drink. The ability to think. The ability to walk. All of these losses and more are on the table.
What's a patient to do when the best treatment for an incurable, terminal, rapidly-progressing neurodegenerative disease is utterly ineffective and medical progress has stagnated for decades?
Uncomfortable though the thought may be, one option is suicide. If you reject this option on religious or moral grounds, the discussion is over. Goodbye and have a nice day.
But if you're willing to think about the situation from a more practical perspective, the problems become obvious. If you're unsuccessful, you could end up in an even worse state. The bullet misses your brain and lodges in your neck, for example. You could hurt someone else physically or mentally in your attempts. Your wife or another family member walks in on your bloody corpse in the bathroom, for example. Or your body hits the oncoming traffic under the bridge you've thrown yourself off of, causing a multi-car accident. In some jurisdictions what you're contemplating will be considered criminal. At the very least, it could get you committed. Either way, you'll be locked up and treated against your will. It may not even be possible to obtain the materials you'll need to complete the job. Buying revolvers and ammunition is far easier in some places than others. Or you might lack the necessary technical skill. What exactly is a lethal deceleration and how exactly to you cause it for certain? How many of these sleeping pills in front of you should be taken and how do you ensure you won't barf them back up? And on and on and on.
There are not many legal jurisdictions whose leaders have even considered this problem, but the state of California is one. In 2015 Governor Jerry Brown signed AB-15 ("The California End of Life Option Act", "EOLOA") into law. It gives patients facing inhumane deaths at the hands of a medical system that can treat but not cure life-threatening diseases a way to opt-out, sparing themselves and loved ones pain and suffering.
Appropriately enough, the reason that the California law is now on the books is that a courageous glioblastoma patient by the name of Brittany Maynard helped to put it there. In her essay My right to death with dignity at 29, she notes:
Because the rest of my body is young and healthy, I am likely to physically hang on for a long time even though cancer is eating my mind. I probably would have suffered in hospice care for weeks or even months. And my family would have had to watch that.
Being relatively young and healthy myself, I knew exactly what Brittany was talking about. I wanted no part of this pointless hell — for either myself or my family.
Under the EOLOA, a patient must work with two doctors:
- attending physician. Determines the patient has a "terminal disease" and writes the prescription for an "aid-in-dying drug."
- consulting physician. Independently evaluates the attending physician's diagnosis.
If attending and consulting physicians agree with the diagnosis, and the attending physician agrees that the patient meets the law's other requirements, the attending physician issues a prescription for the drug. The patient then picks up the prescription and self-administers it. I have heard that it's a water solution made from a powder.
There is no requirement for either the attending or consulting physician to be present during the administration of the drug. In fact, no other person is required to be present. Nor is either physician required to participate at all for that matter. The patient is not even required to take the prescription when received. The entire law is based on voluntary action from start to finish.
One aspect of the EOLOA should deeply concern any glioblastoma patient. The attending physician must determine that the "individual has the physical and mental ability to self-administer the aid-in-dying drug." Conditions that could interfere with this requirement include mental and physical impairments. These are, of course, common in glioblastoma.
Another problematic aspect is the law's definition of "terminal disease":
… an incurable and irreversible disease that has been medically confirmed and will, within reasonable medical judgment, result in death within six months.
This sets up a conflict. Waiting either too long or not long enough disqualifies a patient from the EOLOA. If too long, the disease will progress to the point that the ability to swallow, hold a cup, or behave rationally becomes affected. If too short, the length of time to live will be determined to be more than six months. There's a narrow window of time during which glioblastoma patients will be able to use the EOLOA. In my view, the worst consequences befall those who wait too long. These unfortunate souls will be forced to endure the very hell they were trying to avoid in the first place.
Therefore, I decided to err on the side of being too early. When other patients were talking with doctors about clinical trials, I'd be talking about the California End of Life Option Act.
This led to some tense situations. Long before I had even decided to subject myself to chemoradiotherapy, I'd studied the basics of how the California law worked. I was very worried that my participation in treatments would muddy the waters with respect to my "terminal disease" diagnosis.
My first conversation with Dr. Radiation Oncologist was informative. They had just finished describing the chemoradiation therapy part of the standard of care. I asked, "How will this treatment affect my ability to qualify under the EOLOA?"
Dr. Radiation Oncologist's posture tensed. They were obviously used to dealing with patients whose biggest concern was how long it would take to be cured so they could get on with their lives. They were not used to dealing with patients who knew that this disease was going to kill them and that life as they knew it was already was over.
"I'm a trained radiation oncologist. If you want to talk about treatments, we can talk about treatments. But I'm not a lawyer," Dr. Radiation Oncologist said. The appointment ended abruptly thereafter.
The problem was that I hadn't even decided to pursue treatment. At the same time, nobody had bothered to ask what my priorities were. All of my interactions up to this point had assumed that I would be treated, probably because what kind of fool doesn't want treatment for a brain-melting cancer? What people who hold that view don't understand is that when a terminal disease has no cure and a debilitating course that involves loss of mental and physical function, treatment can be the problem. Doctors who don't understand this will, even if unknowingly, cause their patients harm.
The California EOLOA exists to serve exactly this purpose. It curtails the ability of ignorant but well-meaning doctors to cause their patients excruciating physical and mental pain. It gives patients the power to decide what happens with their bodies, and what horrors to expose their loved ones to. Most of all, it gives patients a safe and responsible way to deal with the mess that ineffective treatment for the worst illnesses can cause.
At least in theory.