Compassion & Choices

In March 2023 I was diagnosed with glioblastoma, a terminal form of brain cancer. There are treatments, but they fail in all but the most exceptional cases. By early June of 2023 I had completed the standard of care, which included surgery followed by chemoradiotherapy. Treatments that were possible after that but which I declined included Optune, a medical device that in my view had a high cost/benefit ratio, and various clinical trials that by my reading had little chance of improving my situation. Knowing that the front-line chemotherapy Temozolomide offered little to no survival benefit in patients with my genetic markers, I rejected an extended course of it. I did, however, pursue an unapproved drug of my own selection. The outcome of that desperate move remains to be seen, but I have so far outlived the majority of patients in a similar situation.

Having exhausted the options most likely to hold the tumor at bay, I began to focus on the next phase of this ordeal: dying. In all likelihood, that meant the incapacitation of my body and simultaneous destruction of my brain. It's an especially bad form of the Bad Death. Nevertheless, this same situation and a haunted house of bad options loom at the end of every glioblastoma diagnosis.

A handful of US states offer an alternative to the Bad Death. In California, where I live, it's called the End of Life Option Act (EOLOA). The EOLOA is a form of legal medical aid-in-dying.

Efforts to get the EOLOA passed in California were spearheaded by a young glioblastoma patient named Brittany Maynard. You might think that this connection to the EOLOA would smooth the path for glioblastoma patients seeking to invoke the EOLOA. If so, you'd be wrong.

The main problem glioblastoma patients face is the EOLOA'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.

All of the problems I've faced with the EOLOA boil down to the four words "death within six months."

The first problem is the unpredictability of glioblastoma. We don't know what causes it. We don't know how to stop it. We have only the foggiest notion of how to slow it down. We have almost no inkling why some glioblastoma patients live much longer than others or die much sooner. In the last four decades, medicine has managed to learn very little about this merciless killer. As my own Dr. Staff Surgeon put it, the margin of error for glioblastoma prognoses can be extremely large — months or even years. This doesn't play well with a law that requires precision to six months.

The second problem with this definition follows from the first: it leaves eligibility open to interpretation. Physicians who are squeamish about aid-in-dying can bend the prognostic margin of error toward the longer end. Physicians with a different inclination can bend the margin of error toward shorter end. For their part, patients usually have no idea where their doctors lie on the spectrum. It's not like this kind of information is published in biographies or directories. And based on my experience hospitals want as little to do with the EOLOA as possible. A doctor's views on the EOLOA and more broadly aid-in-dying are the kind of things that takes time for a patient to learn. And if there's one thing glioblastoma patients lack, it's time.

By April 2024, I'd seen enough to believe that one of the two doctors I'd asked to help me invoke the EOLOA was bending prognostic error to the long side. With each passing month it became clearer that the path I was on lead straight to the Bad Death.

Given the few options left, I decided to contact Compassion & Choices. According to the organization's website, Compassion & Choices is:

A society that affirms life and accepts the inevitability of death, embraces expanded options for compassionate dying and empowers everyone to choose end-of-life care that reflects their values, priorities and beliefs.

Brittany Maynard had worked with this organization to pass the EOLOA. It seemed like a promising lead, but my initial research suggested that Compassion & Choices was mainly or even solely an advocacy organization, working to pass end of life laws in state legislatures. And advocacy is prominent in the organization's About Us page. I wasn't able to find much more than hints that Compassion & Choices worked with individual patients to find organizations that could help them navigate the complexities of the EOLOA.

Fortunately, my first impression was wrong. I emailed Compassion & Choices, asking for an End-of-life Consultation. A consultant quickly got back to me. From the consultation I learned of a few organizations in California that could help. I had heard of none of them before.

Two of the organizations in the response were based in Switzerland, Dignitas and Pegasos. The former is well-known around the world both for its advocacy of end of life options and the services it offers to help people end their lives. Pegasos is a newer organization and from what I can tell much smaller. Both organizations operate under Switzerland's liberal end of life law, which enables citizens of other countries to travel to Switzerland to end their lives.

The main disadvantage of the "Swiss Option" is logistics. I was informed by both organizations that wait times of months are now in effect due to very high demand for the services offered. As a result, appointments must be scheduled months in advance. When it's your time, you must be there or lose your spot. Both the clinic appointment and international travel arrangements for oneself and potentially family must align. It seemed that every turn of my research into the Swiss option turned up new challenges.

In contrast, the EOLOA could in principle be much simpler and less stressful. The prescription issued under the law is a solid powder that remains potent for months or years. It can be taken at any point after obtaining it from a specialized pharmacy. There would be no need to negotiate international travel or international law. Regardless of what wild course my disease took, timing and logistics would be much less of a concern in California than in Switzerland.

I was further encouraged to find within the material forwarded to me by Compassion & Choices referrals to multiple organizations in California who actively help terminally ill patients seeking to invoke the EOLOA. It's hard to overstate how important these organizations are in helping patients obtain the help California law entitles them to. I feel that I must emphasize: I would have found none of these organizations without Compassion & Choices. Having a law on the books does nothing if citizens can't find help in invoking it. Compassion & Choices fills this need.

I've been asked about worthy organizations to whom money for glioblastoma research can be donated My response has been garbled and less than enthusiastic because I really don't know. Anything that will actually help patients is many years away at best. This makes it next to impossible to rank ongoing research efforts.

But I can say with certainty that Compassion & Choices has already made a large positive difference in my own situation. I would suggest that anyone wanting to help glioblastoma patients today through donations consider prioritizing Compassion & Choices.