Bernadette Hoppe

After an initial diagnosis in 2014, in 2017 Bernadette Hoppe was diagnosed with terminal cancer. She died on March 1, 2019. Below is an excerpt of her testimony of April 23, 2018, before the New York State Assembly Health Committee.

I am an attorney, an activist, a wife, a sister, a cousin, an aunt, and a loyal friend. I love to celebrate every holiday, every birthday, every life event. I like to cook, I love to sew clothes and create jewelry to share with those in my life.

Four years ago, I was diagnosed with stage 3B cancer. Since then, I have tolerated 4 types of chemotherapy, 2 rounds of radiation, one surgery which was followed by a massive wound infection, lymphadema of my left leg and hip, renal failure which leaves me with the tubes hanging out of my back, and hepatitis caused by all of the above. There are a few positives from all of this — I learned how convenient it is to pee standing up, and I will never have to shave again.

Ever since this nightmare started in April 2014, I kept thinking that I was going to settle into a new normal and go back to my real life. Then on July 30, 2017, I found out that I had stage 4 cancer. It’s a terminal diagnosis, with no expectation of cure. Any further treatment is to mitigate symptoms and keep me alive for a few extra months, hopefully a year. Maybe even 2 years.

I am 53 years old. I am too young to die. I don’t want to die. I want to live and spend as much time as possible with my sweet, loving, kind and patient wife, Mary. We just found each other 5 and a half years ago, and we have spent so much of our relationship dealing with cancer. I want to enjoy every moment we have left together.

There are still so many things that I want to experience. My dear nieces and nephew and cousins are just starting out on careers and creating families. I want to be a part of that — to watch their successes and cheer them on after the inevitable failures. I don’t want their memories of me to be that of a prolonged, dreadful, suffering death.

Even harder than living with cancer is the thought of dying from cancer. Today, many people have shared and will share their stories of watching loved ones die from cancer. You are hearing from those who cried and nursed and bathed their loved ones while they died an agonizing
death. As I face death from cancer, these are things I know too well.

My wife watched her parents die from cancer. She knows what a death from cancer looks like. It’s not something I want to go through; it’s not something I want to put those who love me through.

I am lucky enough to live in Buffalo, home to Roswell Park Cancer Institute. I receive superb care and have an excellent palliative care team. I know their goal is to keep me free from pain. Having gone through several very painful regimens already, I know that not all pain can be managed. As cancer eats me from the inside, and the tumors enlarge and start pushing my internal organs into unnatural shapes, I keep asking my doctors what to expect next. Is every sharp pain in my abdomen a new problem? Another tumor that has grown so large it will impact a major body system? We have had such hard conversations, my doctors and I. My prognosis is grim. I want to have the conversation about how they can help me die with dignity.

That’s why I want to have access to medical aid in dying. I want the kind of peace an option like that would provide to me and my family — whether or not I ever ultimately use it. One thing I know is that it would allow all of my family to travel to me and be present for my last moments.

The more stories that I hear about other states, and our neighbors in Canada, who have quiet, peaceful, deaths at a time in the dying process that makes sense to them, the more desperately I wish I had that option as a resident of New York.

My friends, my family, my colleagues, constantly ask what can they do to help. And I tell them — please support medical aid in dying. And I ask of you the same: please give me, and those of us with terminal diagnoses, the ability to have hard, emotional conversations with our doctors, our families, our friends, and let us be the ones to make very private, personal and difficult decisions about when and how we die.

I appreciate that this committee keeps New York in the forefront of intelligent health policy. I appreciate that you were responsible for my ability to use medical marijuana to help manage my ever-present nausea and allow me to sleep.

Thank you very much for listening to me. I am asking you to please vote the Medical Aid in Dying Act out of your committee so this it can become law soon enough that I can use it.

I don’t have any time to waste.