The Choice to Have a Good Death: Testimony in Support of Maine LD 347, An Act to Support Death with Dignity

This is a transcript of the testimony in support of LD 347/LD 1066 given by Kathleen Hobson, a resident of Maine, at the April 5, 2017 hearing of the Maine State Legislature’s Joint Standing Committee on Health and Human Services. We have formatted and lightly edited the testimony; likewise, the subheadings are ours.

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Dear Sen. Brakey and members of the Health & Human Services Committee. My name is Kathleen Hobson and I submit this in support of LD347, An Act to Support Death with Dignity. I have been a resident of Maine for nearly 40 years. I have spent most of that time living in Bath and I am now a resident of Phippsburg.

My sister was a beautiful 42-year-old vivacious and active woman, a teacher and a mother of three. She was diagnosed with Stage 4 cancer, fought a valiant battle, and suffered a horrendous death.

Bad Death Without Dignity

What my sister experienced was what many of us call a “bad death”—bad for her, bad for me as a caregiver, and bad for her three beautiful daughters, two of whom were in high school and the third in her first year at the University of Southern Maine. My sister died the way she feared she would—as we all do—in pain, without control, and without dignity. Her agonizing death was how my beautiful nieces learned firsthand about death and how people can die.

As hard as I’ve tried, I have found no dignity in my sister’s death. As inevitable as her death was, it should not have happened that way. It should have been a “good death,” allowing her the dignity she wanted and deserved, while providing her daughters with a positive model of a dignified death and some positive memories of their mothers last days.

Courageous she was. Dignified to the end she was not. But dignity was what she and her girls deserved, not the horrific reality of what happened.

The Choice to Have a Good Death

I am also a Stage 4 cancer patient, and the progression of my disease in inevitable. As a cancer patient I can tell you that I have fought and will continue to fight this cancer of mine. I’ve had to re-learn to do a number of basic skills and have had significant reductions in my quality of life, including speaking.

Despite horrendous surgery and treatments and knowing what there is likely more to come, I want to live.

I want to live despite not being able to use one arm or to feel my face or scalp.

I want to live despite not being able to talk or swallow without having to wear an unbelievably uncomfortable prosthesis.

I want to live despite not being able to open my mouth and having to think ahead and articulate every single word I say so that I can be relatively certain that it is understood.

I want to live despite not being able to eat, chew, smell, taste and enjoy a meal and the very special social interactions I once enjoyed with food and friends and family.

What I really want is to have a “good death.”

At my life’s end I do not want to be in pain for which there is no relief. I do not want to be drugged unconscious and extend the inevitable end of my life. I do not want my family and
caretakers to experience my “bad death,” the kind of death that my beautiful nieces have to remember.

What I do want is to have choice, if l need it and want it—the choice to have a good death.

What I do want from you today and going forward is for you to support this important legislation. LD 347 will provide CHOICE and important safeguards that will allow mentally competent, terminally ill adults to request medication from their doctor to achieve a peaceful death. I believe that I and the people of Maine deserve this right. This bill as written will ensure important rights and protections for us all—patients, caregivers and our medical providers.

Your passing LD 347 will significantly increase the possibility that we will live in a state where our futures include choice —and your choice may make a “good death” possible.

Featured image by Kim Seng.