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This story is from the Anamnesis episode called A Moral Code: Ethical Dilemmas in Medicine at 12:32 in the podcast. It's from Jessica Zitter, MD, MPH, a critical care and palliative care physician at Highland Hospital in Oakland, California. She is also the founder of , a nonprofit focused on humanizing end of life care, and is currently working on her third film, Zitter is the author of the book, .
Medical aid in dying, also known as M-A-I-D or MAID, is a law that gives many patients more control over their lives and their deaths, but not everyone has access to it. And from what I can tell, it's almost impossible for us to fix that. Basically, the law qualifies certain patients to receive medications from a physician that will hasten their death.
While that might sound irresponsible, there are many stipulations to make sure that it's carefully monitored, including restricting it to patients who are already dying and who are just suffering from unremitting symptoms of their disease.
A Foreign Concept
In order to receive those medications, these patients must demonstrate really clear decision-making capacity and understand the impact of this option -- that they will die.
They must be presented with alternative approaches to treatment, which they may not have tried yet -- like hospice or palliative care -- that may mitigate their suffering.
By the time medical aid in dying was legalized in my state, California, through the End of Life Option Act, I was somewhat familiar with the concept of it since four other states had already permitted it, but I still wasn't really sure what to make of it.
First, it was hard to imagine assisting someone in dying when everything that we're taught as doctors is to keep people alive at all costs, especially me, an ICU [intensive care unit] doctor. First, do no harm.
I also started to realize once I really started looking at this law that this law was really going to only be available to the rich, the white, the privileged, the New York Times-reading. The patients that I care for in the public hospital were going to be left out -- as they so often are. And they would never even know what they were missing.
The numbers really tell the story. Here in our hospital over the past 7 years since it was legalized, we've only had two MAID patients that I know of. Most of the patients that we care for are indigent, poor, non-English speaking people. They aren't reading about these new approaches to, really, enhancing the experience of the end of life, especially those like this that are sort of still off the beaten track.
But Kaiser Hospital right down the street, which caters mostly to patients with good insurance, created a very busy department over the past several years, which is totally dedicated to providing MAID to qualified patients who have decided that it's their best option.
So, about a year after the law took effect, I really saw first-hand why this disparity of access would be almost impossible to remedy.
An Impossible Conversation
I had a patient who was afflicted by the most horrendous illness. He had this very severe form of ALS [amyotrophic lateral sclerosis] where he was quickly losing his ability to move, his ability to feed himself, or to speak. He was admitted to our hospital after falling on the floor and his loss of strength was just accelerating really rapidly. He was heading towards being completely dependent on others. It was almost like he was about to be buried alive. It was very painful to watch.
If it were me and I had a condition like that, I would have at least wanted to know about the End of Life Option Act. Not sure I would have used it or reached for it, but I would have wanted to know that it was out there. I suspect that there was a chance I might have chosen it if I were at this stage of this horrible disease that this man had -- at a point when I could still have been able to take the pills on my own, which is a condition that's required by the law.
But I was confident that this patient didn't know about the law. I mean, he was a homeless man with no allies and no advocates. So I was really stuck because I wanted to let him know about it. I felt it was his right, but I also didn't know how to provide that information to him. I wasn't even sure it was appropriate for me to provide that information.
How would it feel to be a vulnerable patient, probably someone without much trust in our healthcare system, and have your doctor offer you the option to end your life?
I mean, talk about flaming the fire of distrust. And if you said, "No, thank you, I don't want that," might you just in the back of your mind have a little bit of a worry that your healthcare providers might disagree or possibly even end your life?
So, in addition to my concerns about exacerbating his personal terror, I was also stymied by the communication barrier inflicted by his illness. And the best that this man could muster was a simple nod or a blink of his eyes. But that really just didn't feel adequate to address the complex question of whether he would want to end his life with medications. I didn't see how I could successfully conduct this delicate conversation with him in the scattered 10-minute breaks in between my patients. But still, I was really torn because I was the barrier standing between him and access to the legal right of MAID.
So that night I posed the question to my husband and a few friends -- none of them are doctors -- and they were aghast, not only by the ethical conundrum, but just by the pure pain of the situation.
"I don't know how you do that job," a few of them said to me.
And when I moved on to discuss it with some doctor colleagues, I realized that even they found it too difficult to contemplate.
They said, "I would just leave it alone. You might just make things worse. If you think he's anxious, maybe just add some benzodiazepines."
A Slow, Painful Death
So in the end, I did not tell my patient about the end-of-life option. He suffered a slow, painful, and really lonely death. Our team cared for him to the best of our abilities -- sedating him if he got agitated or anxious -- but his death was one that I know I would never want for myself.
Is it what he would have chosen for himself? I'll never know.
So, I still think about how that man was left behind in life and then again in death. If I were in his position, I know how different my experience would have been with all of the different options laid out in front of me to choose from -- almost a death smorgasbord. But he was only served one option.
To this day, I don't know how to rectify the disparity in access to MAID. Now that it's legal in 11 states, I hope someone smarter than me is figuring out how to offer the option justly and compassionately to all who would benefit.
Check out the other stories from the A Moral Code: Ethical Dilemmas in Medicine episode, including "His Death Would Not Be a Good Death" and "We Don't Always Know What's 'Best' for Our Patients."
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