Susan Boyce, New Jersey resident diagnosed with a terminal illness, urged the New Jersey State Legislature to authorize medical aid in dying. The following is an excerpt from her testimony.
For me, thinking about end-of-life care issues is not an abstract concept. I was diagnosed 13 years ago with a progressive, terminal, genetic disease — Alpha-1 Antitrypsin Deficiency.
While I’m pleased to share that I’ve outlived my original prognosis by 7 years, this disease has had a profound impact on my life and the lives of everyone in my family. People in my community all recognize me and my oxygen tank. I’m a 55 year old mother of four, and I require oxygen to do even the simplest tasks. My lung function is around 29%. I can no longer enjoy most of the activities we enjoyed as a family together – hiking, sailing, and most of all, swimming in the ocean.
We are not without hope. With the loving support of my husband and amazing children, I live each day to the fullest doing what I can to stay healthy and active. We’ve been forced to have serious conversations about my death as a family. We all know that those with my disease face a terrible decline, with some people lingering breathless for months before dying. I think this prospect would worry most people.
I would like the option of medical aid in dying as a last resort to ease my final days. I know it will give me peace of mind simply having the medication, even if I never use it. It will make it easier for me to fully live out the time I have left.
As our lawmakers I know you must decide on many ethically tricky issues, and some people think this one is tricky, too. I myself don’t. I believe that it is a decision I can make with my doctor and my family, and it’s a decision someone else can make differently. It is optional and voluntary for everyone, and respects everyone’s beliefs and values.
You have the power to spare me and other New Jerseyans from unbearable suffering. I hope you will.