In November 2023, at age 56, my life changed forever. I had so much to be grateful for; a wonderful family, dear friends, and a career of meaning and impact. I loved my job as chief clinical officer at Mount Sinai Health System. As a physician trained in internal medicine and geriatrics, I had spent many years caring for patients at every stage of adulthood, including those at the end of life.
Then I was diagnosed with ALS.
My first thought wasn’t about dying. It was about living with this disease. I’ve cared for patients with ALS, so I knew what was ahead, slowly losing the ability to walk, talk, eat and eventually breathe on my own.
Fear overtook me. It was more than the fear of death. It was the fear of what my dying process would take. The fear of becoming trapped inside my own body, unable to move or communicate, while my mind remained clear, and while I suffocated to death.
As a doctor, I’ve spent my career helping patients make some of the hardest decisions of their lives. I’ve always believed that patients deserve honest information, compassion and the ability to make choices about their own care. That belief became deeply personal after my diagnosis. I now recognized just how important it is to have agency when facing a devastating terminal illness.
That’s why I became an advocate for Medical Aid in Dying. Medical Aid in Dying is not about giving up. It’s not about choosing death instead of life. It’s about giving people with terminal illness a choice.
The law has strict rules. It is only available to adults with terminal illness who have six months or less to live. Two doctors must agree they qualify and the person must be able to take the medication themselves.
New York’s law has additional protections including that the request must be recorded and made a permanent part of the medical record, that a third clinician with expertise in psychiatry, neurology, or psychology confirm that the patient has decisional capacity, and that there is a waiting period between when a prescription for these medications is written and when they can be dispensed.
Oregon became the first state to pass a Medical Aid in Dying law nearly 30 years ago. Since then, 12 other states and the District of Columbia have passed similar laws. In all those years we have never seen any relaxing of the eligibility requirements to include people who aren’t terminally ill, who don’t have the ability to make decisions for themselves, or who cannot self-administer the medications.
Now New York has joined them. Beginning this month, New Yorkers who meet the legal requirements will have this option, thanks to the Medical Aid in Dying Act signed by Gov. Hochul.
Knowing this option exists allows me to focus on living instead of worrying about how my life may end. It gives me peace of mind. It lets me spend more time enjoying my family and friends, doing meaningful work and appreciating the time I still have.
People often assume that having this option means someone wants to use it right away. That isn’t true. I have a full life. I still find joy every day. I’m not focused on dying.
I continue to show up for my loved ones, my colleagues and other people with serious illnesses who inspire me and give me hope. ALS has changed my life, but it has not taken away my ability to find purpose, connection and gratitude.
I find comfort in knowing that if my disease reaches a point where suffering becomes unbearable, I will have the ability to decide what happens next. My illness won’t make that decision for me.
Boal served as chief clinical officer for Mount Sinai Health System.