In the fall of 2023, at the height of my medical career and the prime of my life at age 56, I received a death sentence: Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s Disease.
ALS is universally fatal. The clinical course typically includes total body paralysis, the loss of speaking and swallowing, and, eventually, the ability to breathe. Most of us die within a few years of diagnosis.
I began my career co-founding and, for 10 years, running the Mount Sinai Visiting Doctors program, which cares for people with late stage and terminal illnesses in their homes in New York City. In this position, I saw firsthand the terrible suffering ALS can cause at the end of life.
When I was diagnosed with ALS, knowing without question what was in store for me, I entered a state of profound depression, panic, and dread. I stepped down from my role as Chief Clinical Officer for the Mount Sinai Health System and tried to come to grips with the future.
It was only when I realized that there is an option to end my suffering on my own terms, should it be too great for me and my family to bear, that my depression began to lift. I am fortunate to have the means to establish residency in a state where Medical Aid in Dying is legal.
But thousands of other terminally ill New Yorkers may not have the resources to travel to another state, and frankly, no one should have to leave their home, their support system, and their care team behind for the right to this compassionate option.
The state Legislature and Governor Kathy Hochul have within their power the ability to change that by making this compassionate end-of-life option legal this year. The Assembly recently made history by passing the Medical Aid in Dying Act for the first time since it was introduced a decade ago. The Senate must do the same.
When medical aid in dying was first implemented in Oregon in 1997, I was a geriatrician caring for vulnerable, mostly older, patients with serious and terminal illnesses. I had concerns about possible unintended consequences of this option. I watched with curiosity as Oregon’s law took effect, and over the next three decades, as nine additional states and Washington D.C. implemented medical aid in dying.
What I learned surprised me. Reviewing the extensive experience in these states, the evidence was clear that neither my concerns nor the opponents’ dire predictions of harm to vulnerable communities have ever come to pass.
Ironically, the concerns I had 30 years ago, which have proven unfounded, are the same concerns opponents of New York’s Medical Aid in Dying Act raise today.
The concern that these laws will be expanded beyond people who are actually dying from an incurable and irreversible illness is belied by the fact that since Oregon’s law was first approved in 1994, no state has ever expanded the core eligibility requirements to access aid in dying. In every jurisdiction that has authorized medical aid in dying in the United States (11 states and Washington, D.C.), only mentally capable adults who are terminally ill with less than six months to live can legally ask for and receive a prescription to help them end their lives peacefully at a time of their choosing.
Pointing to concerns about laws in Canada and European countries that permit euthanasia as a reason why New York should be wary of authorizing medical aid in dying is inapt. Euthanasia is illegal in every U.S. jurisdiction, and New York’s bill reinforces this prohibition.
The concern that those struggling with mental health issues clouding their judgement may be permitted to end their lives under New York’s Medical Aid in Dying Act is not shared by any of the professional medical organizations that have reviewed the bill and support it. The New York Psychiatric Association, for example, has pointed to the strong safeguards that require two physicians to determine if a person requesting aid in dying has the mental capacity to make this critical decision. They also must undergo a mental health evaluation if the attending or consulting physician determines the patient may lack decision-making capacity due to impaired judgment. It is worth noting that doctors routinely determine the ability of our patients to make life and death health care decisions. Medical aid in dying is no different.
Medical aid in dying has not been used in lieu of hospice and palliative care services or because of lack of access to these services. Nearly 90 percent of those who opt for medical aid in dying were already enrolled in hospice, where an interdisciplinary team of professionals provides support and care. In those same states, the utilization of hospice and palliative care increased after the laws were enacted. It turns out that when terminally ill individuals inquire about medical aid in dying, it opens space for conversations about the benefits of, and referrals to, hospice and palliative care services.
The hard truth is that for some dying patients, the promise of a pain-free death through symptom control simply isn’t possible, despite access to the very best hospice and palliative care. Take, for example, Ayla Eilert, a 24-year-old dancer and artist living in New York, who was diagnosed with an incredibly aggressive form of tongue cancer in 2021.
She desperately wanted to live and gratefully agreed to surgical, chemotherapeutic, and radiation treatments. But her tumor was unstoppable. Despite being cared for by arguably the nation’s best palliative care and hospice services, Ayla lived and finally died in agony that was truly beyond measure. Nearing her end, she begged for medical aid in dying, but that relief was not legally available to her.
One of the greatest sources of suffering for people with terminal illnesses is the fear of not having a sense of control and autonomy as they get closer to death. For every person who chooses to avail themselves of medical aid in dying, there are many more who are profoundly comforted in merely knowing it would be available to them.
That is certainly the case for me. Knowing I can access medical aid in dying has freed me from fear of the future and allowed me to live what remains of my life as fully as possible. My wife and I finished building a home in Columbia County, where we are busily taking care of our chickens (and soon goats) and spending meaningful and joyful time with family and friends. I am genuinely back to loving life and being grateful for all the blessings I have been granted. Knowing I can access medical aid in dying if, one day, I believe it is the right thing for me, has made all the difference in the world.
I want all New Yorkers who are terminally ill to be able to feel that sense of comfort, control, and autonomy so that they can get back to living too.
Dr. Jeremy Boal is an internist, geriatrician, and physician executive living in Columbia County, New York. In late 2023, he stepped down from his role as Chief Clinical Officer of the Mount Sinai Health System after receiving a diagnosis of ALS.
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