My Struggle for a Good Death

We tend to think of death as a point in time. Before, we're alive. After, we're dead. In reality death is a process. Except in extreme cases, death takes time. Sometimes it takes a lot of time. During that time varying degrees of suffering occur. Multiply the duration of a death by the suffering involved, and you get a metric for the "goodness" or "badness" of a death. At one extreme are short deaths with little suffering. At the other extreme are prolonged deaths filled with suffering. There's no denying that some deaths are better than others. Those who have seen a bad death never forget it.

Until a year ago, my main struggle was to live a good life. Although our specific conditions may differ, this is the universal struggle we're all familiar with.

Then life challenged me with a new struggle. I never asked for it and would have refused if given the choice. Unlike the struggle for a good life, which lies at the center of all cultures, my new struggle was not the kind you hear much about. In this struggle, there are no heroes. No movies have been made about this struggle because it ends badly. Those who engage in this struggle will never be celebrated. To the extent that they are noticed at all, they will more likely than not be vilified. Many who view this struggle from the comfort and sanity of their quest for a good life will view my new struggle as less than honorable, morally questionable, and possibly evil. In many parts of the world my new struggle is a punishable offense. My new struggle is one that many would rather shove into a dark cellar and leave to rot. My new struggle is the stuff of nightmares.

On March 23, 2023, I was diagnosed with glioblastoma, an incurable and universally fatal form of brain cancer. Treated with the best technologies that the industrialized world can muster, median survival is measured in months. Despite decades of research and untold fortunes spent, the outlook has barely changed. It doesn't matter how much money you throw at it, how hard you pray, or how desperately you hope for a different outcome, glioblastoma takes no prisoners.

Unlike other terminal illnesses glioblastoma kills by destroying the organ that makes you who you are. The tumor invades surrounding brain tissue, casting off biological wreckage that can never be set right. Capabilities that since birth have been taken for granted disintegrate. We're talking about foundational abilities like moving, walking, speech, creativity, thought, and controlling bowels and bladder. All of these abilities and more are on the chopping block as glioblastoma does its nasty business.

The medical literatures says little to nothing about the suffering that glioblastoma patients endure. Why should it? The medical literature exists to communicate treatment advances and does not concern itself with anecdotes of dying and suffering patients — even if treatments themselves might have contributed to the suffering.

But it's only through those missing anecdotes that the full scope of the impossible challenges faced by glioblastoma patients and their families can be appreciated.

There aren't many venues for understanding what glioblastoma is capable of. Hospitals offering glioblastoma treatments produce slick brochures and highly-polished videos profiling "survivors." They feature cheerful patients who have beat the odds and lived for years. Missing from these productions is any mention of the majority of glioblastoma patients who die horrible deaths at the mercy of a disease without a cure or effective treatments.

The truth of glioblastoma can only be seen elsewhere. One venue I can recommend is the glioblastoma subreddit. Most of its posts are written by those who care about a glioblastoma patient. Posts by patients themselves are rare. This in itself is telling; most glioblastoma patients are in no position to write about what happened to them or how they feel about it. Even so, accounts from family and friends are worth reading for the unvarnished detail they offer. What follows is a tiny selection drawn from recent posts.

1. My dad passed today.. "Everything I am feeling seems like it is too big to carry all at once. I have read of many others on here that get through it but that seems like an impossible thing to do. It is the hardest watching my mom and my younger brother go through it. I wish I could take the pain away from them."
2. how much time until the end? (my 30 year old brother). "… he lost mobility a year ago, autonomy in may. started symptoms of dementia in september. been sleeping 16h per day since december. sometimes chokes on water. been incontinent since late january. for the last week he sometimes gets agitated because he starts repeating the same words and now there is not one sentence he can make sense. when he has his eyes open its like he is not seeing anything, just gazing the void. …"
3. Response to "Terminal Lucidity". "…My wife came round a few hours before she passed. We spoke a little, nothing amazingly clear, but definitely better than what she had said in the few weeks and months prior. My wife was 33 when she died, she stopped recognising our daughter at all, and stopped registering me as her husband. At this point, I didn’t bring up our kid, but she knew I was her husband. My wife’s last words were ‘I’m so fucking scared’ which I’d be lying if I said doesn’t haunt me 7 months on. …"
4. Am I horrible for wanting this to be over? Insight needed.. "I've put my life on hold for over 3 years now because I don't want to miss anything with her [mother], and I'm now stuck in a horrible job, I've missed out on life events, vacations, etc…but that's fine because I did it for her and I'm trying to not be selfish. … I feel so much guilt for just wanting her to just peacefully pass and I feel like this existence must seem like forever for her.
5. can anyone elucidate me about how to know when the end is really near please? [30 years old]. "in january 2023 the tumour had spread in his brain. a year ago, he lost complete mobility. in june he lost complete autonomy, in august he started to have dementia. since december, anything he says doesnt make any sense. in january he became incontinent, when i look into his eyes i cant even see that he has human eyes. feels like he has an animalesc expression in his eyes, feels dead inside. he is been sleeping like 18 hours a day for the last 4 months and doesnt sleep more because we wake him up to take the anti convulsant meds."
6. How to make last days peaceful?. "Hello everyone, my mom has made it about 14 months since her diagnosis and seems to be declining now. Her mind is in overdrive every second of every moment of the day, she is thinking about things that need to get done. She never stops taking about what needs to be done. It’s non stop. And she needs help with everything which is hard for my dad to keep up with, It’s impossible to do everything she wants at every moment. How can we make her happy and not stresssed? it’s so sad that she is unhappy because she can’t do the things she wants to do on her own. Tonight she said she feels bad for putting everyone through this knowing it won’t be a positive outcome for any of us. It’s feeling like maybe we’re nearing the end and I don’t want her feeling stressed and sad. Not sure what to do."
7. Father took a turn for the worst today.. "So today was the day I was dreading. When physical pain and laboured breathing would settle. His pain in his back is a 10/10 and was gasping for air quite a bit. Now. We are waiting for spot for hospice. My dad was mentioning on Thursday that his bank accounts will be frozen on the 28th and he will be in the void. …"
8. Caregivers: how did you return to work?. "My wife (37f) is legally blind and partially paralyzed, requiring 24/7 assistance for anything and everything. We have two young children 4 and 6. I’ve been off work since September 2023 when my wife had a stroke, leading to her diagnosis, and I’m not sure how to even contemplate returning to work at this point but my benefits are running out and I have to start planning for it. Curious how others in similar situations got their lives started again. I’ve been told by the doctors that her prognosis is poor but because of her age she could also live another 10 years like this, and I really don’t know how to restart things… any anecdotes or guidance is appreciated. Thank you"

And on and on. My sample set is drawn from just the last couple of weeks. Browse the all-time top posts for more. Be warned: it's god-awful stuff.

There are many common themes in these posts, but one stands out for its frequency and pain level: the one that asks when the ordeal will end. Median survival with glioblastoma may be measured in months, but those aren't necessarily good months. For many patients the time between surgery and death is the worst of their lives. There are fates worse than death and living with late stage glioblastoma may be one of them.

What I'm getting at needs a name if it's to be dragged from its dark cellar into the sunlight. I call it the Bad Death. The Bad Death has been informed by personal experience, careful study of first-hand accounts, and books on the topic of terminal illness such as Being Mortal. Above all, the Bad Death involves loss of agency and humanity. A victim of the Bad Death degenerates into a thing — alive but increasingly unrecognizable as human. Kafka's The Metamorphosis offers a literary glimpse at The Bad Death.

I should emphasize that my struggle for a Good Death coincides with an ongoing struggle for a good life. As I've written before, I continue to practice the principle of least convenience. I dedicate between two to three hours of most days to strengthening and stretching exercises. I go for six-mile walks regularly. I enjoy the company of family. I eat right and sleep enough. Lacking effective treatment options, I used my background in medicinal chemistry to develop and publish an alternative. There's more, but the point is that I'm doing everything I can think of to fend off the Bad Death while striving for a good life.

I'm doing this with full knowledge that clinical data show that patients with high mental and physical health live longer with glioblastoma. My actions could increase my risk of experiencing a Bad Death as my strong, healthy body keeps me alive long after glioblastoma has destroyed my brain.

The Bad Death is cruel, inhumane, and utterly pointless. It doesn't inspire. It doesn't uplift. It subjects its victims and their families to pure, unmitigated suffering that inflicts deep psychological wounds on all involved.

Even before driving to the ER I feared the Bad Death. My initial symptoms may not have pointed directly to glioblastoma, but they pointed in the direction of a life-ending condition. On learning that I had a brain tumor of some kind, my first thought was of the Bad Death. My reluctance to undergo surgery had nothing to do with fear of dying on the operating table. It had everything to do with facing the Bad Death after a successful surgery. I don't regret having had the surgery, but the case for refusing it is as strong now as ever.

The Bad Death has loomed over all of my interactions with the medical system after surgery. My first meetings with Drs. Neuro-Oncologist and Radiation Oncologist were tense. The first words out of these doctor's mouths were about treatment and getting started on it as soon as possible. I hadn't even decided if I wanted further treatment. I had already researched the California End of Life Option Act (EOLOA). I wasn't worried that treatment would fail because the medical literature was clear that it would. I feared that treatment could work just enough to disqualify me from invoking the EOLOA. My attempts to express this concern failed miserably. The doctors I spoke with were used to patients clinging to every last shred of hope and here I was talking about taking my own life. The frustration and even anger on these doctors' faces was obvious.

Through repeated observation and a little extrapolation, I've come to understand part of the tension in those clinic exam rooms. Oncologists are hardened optimists. My singular focus on dying must have come as a shock bordering on insult to professionals who have devoted their lives to the treatment path.

As described before, California's EOLOA is a law passed in 2015 that gives state residents access to a life-ending drug under very specific circumstances. A simplified version of the protocol is:

1. The patient makes a formal request to an "attending physician" for a life-ending drug.
2. The attending physician asks a "consulting physician" for a prognosis, or an estimated time until death.
3. If the prognosis is more than six months, the attending physician refuses the request.

There are other requirements as well. I need to be able to swallow because the lethal prescription is dosed orally. I need to be able to sign legal documents. Most importantly, I need to be of sound mind and may be subject to a psychological exam. I shouldn't need to explicitly state this but feel that I must: all of these abilities are at risk as glioblastoma progresses. There's a very narrow window of time between a six month prognosis and the point at which progression makes it impossible for me to invoke the EOLOA. This is not the kind of thing you can put off until you're on your deathbed, although some have tried to convince me otherwise.

My only option was to lay the groundwork for EOLOA early. With the help of an oncology social worker, I was able to set up the necessary chain of communication. Dr. PCP agreed to play the role of attending physician. Dr. Neuro-Oncologist agreed to play the role of consulting physician. In doing this I learned that by far the hardest role to fill is attending physician. This doctor prescribes the lethal drug. Many, possibly most, doctors are unwilling to do so. I can understand the reason, but it makes navigating the EOLOA that much harder.

I'm simplifying a lot. What I can say is that the process of setting up the EOLOA was slow, scary, and agonizing. It shouldn't have been this way given the terminal and degrading nature of my illness. You'd think that somebody somewhere had thought all this through. You'd be wrong.

A far more professional and compassionate approach would have been to present the EOLOA right along treatment options. Doctors who deal with terminally ill patients should be trained in the Bad Death. They should be forced to watch it. To smell it. To gag on it. They should be forced to answer questions from distraught families about when all the suffering will end. They should receive training that a California law exists that allows patients to avoid the Bad Death. Hospital systems should work to ensure that the kinds of idiotic roadblocks I faced never happen to any patient. No patient should be coerced into treatment that's likely to lead to the Bad Death.

Sadly, none of this happened. I was more or less completely on my own to navigate a mess at the intersection of law and medicine. I feel that harm was done.

Many claim that laws like California's EOLOA are ripe for abuse and lead the state down a slippery slope to widespread euthanasia. With respect, these people don't know what the fuck they're talking about. I've met with heavy resistance at every step of the way in my struggle to invoke the EOLOA. And I have been given what medical professionals themselves call a "terminal diagnosis."

At almost every clinic meeting with Dr. Neuro-Oncologist I've asked for a prognosis. Recall that nothing happens under the EOLOA without a prognosis of six months to live. At first the answer I got was vague. About five months ago, the prognosis became clearer — six to twelve months. The last answer was that there was no change in prognosis.

I look forward to the day when Dr. Neuro-Oncologist tells me that they will finally give the prognosis I need to invoke the EOLOA. If I thought it would help, I would literally beg for it.

After learning that Drs. PCP and Neuro-Oncologists would participate in the EOLOA, I was more than relieved. Maybe I could avoid the Bad Death after all. But as the months have passed, those early hopes have crumbled.

Don't get me wrong. I'm grateful for the EOLOA, and for the two doctors who have bravely agreed to help me invoke it. The problems lie with the law itself and, I suspect, a medical profession that has never come to terms with the suffering that ineffective treatments for terminal illnesses can inflict on patients and their families.

The root of the problem with California's EOLOA is the "six months to live" requirement. The last six months of life with glioblastoma often involve paralysis, loss of motor control and severely degraded cognitive ability. Any one of these disabilities can be grounds for disqualification. Even worse, prognosis is made extremely difficult by the complex and varied nature of the disease. As Dr. Neuro-Oncologist told me, "There are no flowcharts."

The state of California publishes statistics on the use of the EOLOA. The last report, dated July 2023 and covering the year 2022, is available here. In 2022 1,270 EOLOA prescriptions were written and 853 deaths were reported. California's population is roughly 40 million, implying a rate of 0.002% deaths from the EOLOA. There's clearly a lot going on here, but I suspect that two factors for the low use of the EOLOA are the near invisibility of the program and the heavy friction at every point in trying to invoke it.

I've explored alternatives, one of which was hospice. My hope was that a hospice organization would be more receptive and understanding to my situation. What I found was demoralizing. To be eligible for hospice, a prognosis of six months to live is needed. This is exactly the prognosis required by the California EOLOA. But more than this, the doctors at the hospices I contacted don't participate in the EOLOA. Instead, they work with doctors who do. Back to square one trying to find doctors who are both aware of the EOLOA and who are willing to participate.

Several months ago, I wrote about how Drs. Neuro-Oncologist and Staff surgeon disagreed strongly about the interpretation of my MRI. Dr. Staff Surgeon said the tumor was back just weeks after surgery. Dr. Neuro-Oncologist said it wasn't tumor but rather "blood products." Realist versus optimist, or so I thought.

Thinking that I'd get a second opinion from someone with a different perspective, I contacted Dr. Staff Surgeon for their take on my then-latest MRIs. Dr. Staff Surgeon said that if anything my MRI showed improvement. Besides, my symptoms were mild and I wasn't even paralyzed on my left side. I gather that hemiplegia is viewed by at least some trained experts as an obligatory milestone on my journey. Oh, the places I'll go.

In desperation, I recalled the story of the California EOLOA. It was spearheaded by Brittany Maynard, a young woman diagnosed with glioblastoma who ended her own life to avoid the Bad Death. Her actions near the end of her life led to the passage of the EOLOA by the California legislature and its signing into law by then-Governor Jerry Brown.

Maynard partnered with Compassion & Choices, an organization that "improves care, expands options and empowers everyone to chart their end-of-life journey." Perhaps this organization could point me toward some doctors who understand the Bad Death and who could work with patients like me wanting to avoid it. Unfortunately, Compassion & Choices appears to be mainly an advocacy organization. It collects donations and lobbies for end of life legislation. It's not nothing, but it's also not going to help me directly.

The Compassion & Choices website does contain information that might be useful in some circumstances. For example, under Resources, I found information on Voluntary Stopping Eating and Drinking (VSED). The website describes it like this:

This option, also known as VSED, can be chosen by a decisionally-capable adult who consciously refuses foods and fluids in order to advance the time of their death. The U.S. Supreme Court has affirmed the right of a mentally capable individual to refuse medical therapies, including food and fluids.

Near the end of the article is a timeline of events for those who decide to take this path. In the first four days, you're hungry and thirsty and may have trouble urinating. In the last four days, you're in a coma. The period in-between, which can vary in length, includes weakening, more sleep, thirst, weakness, and delirium.

If all else fails, there's VSED. But I can't help but think that the existence of this kind of information on the Compassion & Choices website points to a systemic failure. Clearly, it's a failure to adopt end of life legislation in many US states. But it's also a failure in those states like California that have adopted the legislation. I've had a lot of time to think about the Bad Death, but I'm not sure where I'd come down given a choice between it and VSED. Even so, I can imagine forms of the Bad Death that would make the choice easy. Whether or not mental incapacity would allow me to go through with it is another question.

In writing this article I discovered that I had missed the part of the Compassion & Choices website that does offer individual help (End-of-Life Consultation). It's not clear why this page is hidden, but it took me four times scouring the site to find it. I'm not sure what kinds of services are offered. To me, it looks like generic end-of-life discussion:

Death and dying can be difficult subjects, but not for us. We are comfortable having these conversations. We are not a religious organization, nor do we promote any one ethical perspective or belief system. We offer an atmosphere free from judgment, honoring all individuals regardless of sexual orientation, gender identity, age, disability, culture, ethnicity or any other factor..

Maybe this organization can help, but I have doubts.

My advice to glioblastoma patients who are considering either the California EOLOA or a similar program elsewhere in the United States is this: don't count on it. With incredible effort and determination, and someone willing to help, you may be able to jump through the same hoops I have. But it probably won't do you any good. Despite having been championed by a glioblastoma patient, the EOLOA doesn't work for glioblastoma patients. You can look, but probably will never touch. Find another way to avoid the Bad Death, and start now while there is time.

My symptoms progress relentlessly as they have since surgery. I can feel those abilities I took for granted just one year ago buckling under the onslaught of a cancer that's not just out to kill, but to torture. The rate of advance isn't linear, but exponential. As glioblastoma claims ever more territory, my family and I are faced with enduring the Bad Death I've feared from the beginning.