The Need for Liberty and Dignity at the End of Life

Last year I testified in the Maryland General Assembly on behalf of Compassion and Choices for passage of the Death with Dignity and Self-determination legislation. The bill failed, and this year was reintroduced as the End of Life Options Act. What hasn't changed is the need for such legislation, as my experience this past year, expressed below in my testimony, makes clear.

Unfortunately there are four Democrats on the Senate Judicial Proceedings Committee -- the same committee that held up gender identity anti-discrimination for eight years -- who have yet to understand that this is an issue of liberty and dignity, not one where religious beliefs take precedence over the constitution. The media is also complicit when it refers to ending one's life in its terminal phase as "suicide."

February 25, 2016

Chairman Zirkin, Vice Chair Gladden, distinguished committee members:

I'm Dr. Dana Beyer, and I'm honored to be before you today to testify about my support for SB 418, the End of Life Options Act. I will continue my testimony for that which I entered last year, because in it there is a story.

I testified before this committee on this bill's predecessor last year the day before my 87-year-old mother came down with the flu. What for her neighbors was a mild strain of the virus, keeping them housebound for three days, turned out to be the turning point in the last phase of my mother's life. She was so weakened by the virus she was hospitalized for five days, then underwent inpatient physical and occupational rehabilitation for three weeks.

In spite of all her best efforts, she continued to waste away, losing 30% of her body weight over the next three months. That sarcopenia, which translated into English means she looked like she had just been liberated from a concentration camp, sapped her will to live. She knew there was no return; her appetite was gone, anti-depressants had no effect, and as her muscle mass wasted away, so, too, did her brain soon follow suit.

Every day when she was lucid she would ask me to put her to sleep - at times, asking that I "kill" her - and, of course, I had to refuse. Sometimes she would argue that she paid for my medical education, which would get us both smiling. We talked for hours each week, and it was clear to both of us that she had run out her clock and simply was ready to end it. But I couldn't help her, even though I'm a physician, and this frustrated her terribly. She knew her mind was failing, her need for round-the-clock care was demeaning, and she no longer wanted to live a life for which she had no desire and which was reduced to simply going to and from the bathroom.

I did everything I could, from signing her up for in-home hospice services, which were superb - the Jewish Social Services Agency of Montgomery County was exemplary. A few months later I transferred her to assisted living, where she had a community of neighbors with similar needs who lived in a more social setting. None of that, however, changed her desire to die. She wanted to join my father, and there was nothing I could do to help her.

She finally died on the fourth anniversary of my father's death. We had a family visit from her sister and nephew that Thanksgiving weekend, and as I left I told her I would be saying kaddish for Dad the next day on his yahrzeit. Just before I was preparing to do so the next morning in synagogue I got the call from her nursing staff, telling me she had passed away that morning.

This debate, about dignity and self-determination, often bogs down on the issue of excruciating physical pain. Many who want to keep everyone alive to the very last minute are now considering making such an exception, but I want to emphasize that there is pain other than the physical. My mother's mental and spiritual anguish at losing complete control over her destiny was far more painful to her, and to me, than any physical pain either she or I have suffered. The existential issues of life and death are just as real and palpable as physical pain, and their mysteries are for each of us to grapple with as best we can. The state has no business interfering in those personal choices at the end of life, just as it has no business during any other phase of life.

As a physician, I will reiterate it is not my role or that of my colleagues to influence these decisions beyond confirming that the end is near, as best we can determine. Making this a medical issue - calling it "physician-assisted suicide" - is an insult to both the physicians and the dying.

Had this bill become law last year, it would have made no difference to my family; my mother's dementia was too far developed by that time. It may very well be that had it been law a year before there would have been nothing I could have done to ease her passage. I do know, however, that my mother, as fiercely independent as she was, very much wanted to make that decision for herself.

I respectfully ask that you favorably report SB 418 out of committee.

My experience has strengthened my belief that should my time come for me as it did for my mother, that I should have the option to live and die on my terms and no one else's.