PERSPECTIVE: Making Our Own Individual End-of-Life Decisions

by Paul Bluestein I am speaking out about this because my friend Hal can’t.

Hal was an international systems analyst until his retirement after which he devoted his time to things he loved including music, theatre, painting, sailing, windsurfing, gardening, and photography. He volunteered for the CATCH Program in Bridgeport, and the Norwalk Senior Center. Over the years, he served on boards of the American Red Cross, his church, the Carver Center in Norwalk and the Voluntary Action Center.

Hal was physically active and involved in the life of his community then, at age 90, he was diagnosed with a terminal illness. He did not want to endure the inevitable period of declining mental and physical capability or the pain of being dependent on his wife and children after a lifetime of independence. Hal had lived a long, productive and rewarding life and wanted to die with dignity … just as he had lived and not spending his hours and his days between medical treatments and interventions that would only prolong, for a short period, the remaining time he had. He wanted to bring a rapid end to what had been a life well-lived.

Hal’s wife of 57 years agreed with his decision and so did his children. He talked to his doctor who, not surprisingly, was unable to do anything for his patient. Hal wrote to his friends to say goodbye and to let them know that he had decided to not eat or drink – anything – until he died. He had made the calculations and figured that would be the way he could accomplish his quickest exit. It took Hal more than a week to die, but during that time he never voiced any regret about his decision but he often said that he wished there had been an easier option for him.

It would be easy to see Hal’s story as just an anecdote, especially if you don’t happen to agree with the decision he made. But this is not just an anecdote to me. It’s personal. For me, for my wife, and for most of my friends who are about my age, one of the biggest worries that we share is that we may end up without having the right to make the our own most personal decisions at the end of our lives.

We live with the fear that, because we live here in Connecticut, a state that does not honor individuals’ rights to use prescribed medication to end their lives peacefully rather than suffering a painful and protracted death, we may end up having to leave our home to travel to a more humane state, or to do as our friend Hal, and more recently Denny, did and quit eating and drinking to hasten our own final exits.

I sit before you now as someone past 70 wondering why you - strangers to me, members of this Public Health Committee as well as your colleagues in the CT General Assembly - get to decide what my end of life is going to be like. This is very real … and gets more real every day for me and thousands of other people in Connecticut.

I have been a practicing physician. I’ve seen firsthand the indignities and suffering that dying can inflict. I am no stranger to the American way of dying. But, in my last days or months, what I want for myself, for my wife and friends, and also for my physician, is to have available all options for care at the end of life. I do not want others to consign me to starving myself to death to avoid prolongation of life that has lost its meaning to me.

More than 20 years ago, Oregon implemented its Death with Dignity Act. Since then, Washington, Vermont, California, Montana, Colorado and Washington DC have passed legislation authorizing medical aid in dying for terminally ill adults, and just this week, the Hawaii State House approved the Our Care, Our Choice Act.

Last November, the Vermont Medical Society dropped its opposition to Death with Dignity; in December, its Massachusetts counterpart followed suit. Physicians are increasingly becoming Death with Dignity proponents and 7 in 10 Americans support death with dignity.

What about Connecticut? Death with Dignity bills have been considered several times. The first attempts came in 1995 and 1997. After Washington passed the second Death with Dignity statute in the nation, the issue returned to the Connecticut legislature in 2009. Bills considered in 2013, 2014, 2015 and 2017 received Committee hearings but were not put up for a vote.

Isn’t it finally time for the citizens of this state, and their doctors, to have the right to make their own decisions about the care they will receive at the end of their own lives?

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Dr. Paul Bluestein, MD, FACOG is an obstetrics & gynecology specialist in Fairfield, and has been practicing for four decades. This testimony was submitted to the Connecticut General Assembly’s Public Health Committee earlier this year and is included in the record of a public hearing on proposed legislation that would have allowed “a physician to dispense or prescribe medication at the request of a mentally competent patient that has a terminal illness that such patient may self- administer to bring about his or her death.”  The proposal was not approved during the 2018 legislative session.