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Connecticut Residents Turn Out to Testify for Aid-in-Dying Law in Legislature

-Over 100 Grassroots Supporters at Capitol -State Representative Kelly Luxenberg Tells Personal Story in Hearing -Bill Has 16 Co-Sponsors, Support from Judiciary Chairman Eric Coleman, Attorney General George Jepsen, and Comptroller Kevin Lembo

March 18, 2015 (Hartford, CT) – Today, supporters of aid in dying joined with legislators to demonstrate their support for H.B. No. 7015, An Act Concerning Aid in Dying for Terminally Ill Patients, in the Judiciary Committee. Among those in attendance were longtime state lobbyist Barry Williams who has advanced Parkinson’s disease, former state senator Mary Anne Handley, as well as Philadelphia nurse Barbara Mancini and Litchfield resident Hunt Williams whose personal stories have made national news.

The bill has continued to gain political momentum. A March 11th Quinnipiac poll found voters support the legislation 63 – 31 percent, up from last year’s poll on the same question, including majorities in all party, age and gender groups.

“We are gaining traction and continuing to build a statewide grassroots movement,” said Tim Appleton, Connecticut Campaign Director for Compassion & Choices.

The raised bill currently has 16 House and Senate sponsors. It is modeled after legislation in Oregon and other states where aid in dying has been proven to be good policy and medical practice with a combined 30 years of safe implementation. It allows a qualified, terminally ill and mentally competent adult to request and obtain a prescription from their physician for medication that the patient can self-administer to bring about a peaceful and humane death. Besides Oregon, aid in dying is authorized in Washington, Montana, Vermont and New Mexico.

State Representative Kelly Luxenberg testified that it was her personal family experiences that have made her a passionate supporter of this issue. “This is about giving people the choice, everyone should have the right to control how they want to live or die,” says Luxenberg. (Testimony below)

Bills were raised here in 2013 and 2014, each year gaining more support among lawmakers. Sen. Eric Coleman, D-Bloomfield, is the lead sponsor this year. Additionally, the Attorney General George Jepsen and State Comptroller Kevin Lembo have publicly endorsed medical aid in dying for terminally ill adults.

“We have learned a lot about the need for compassionate end-of-life choice, the support for it in the community and how such legislation can be safely implemented here,” Senator Coleman said.

Additional sponsors of the bill include Senators Beth Bye (West Hartford), Gary Winfield (New Haven); and Representatives James Albis (East Haven), David Alexander (Enfield), David Baram (Bloomfield), Andrew Fleischman (West Hartford), Jack Hennessey (Bridgeport), Roland Lemar (North Haven), Rick Lopes (New Britain), Kelly Luxenberg (Manchester), Kim Rose (Milford), Phil Miller (Ivoryton), Russ Morin (Wethersfield), Jonathan Steinberg (Westport), and Toni Walker (New Haven).

“I support this legislation because I want this choice,” Comptroller Kevin Lembo said. “Whether or not I exercise my choice would be decided among me, my family, and my physician.”

Today’s hearing follows last Sunday’s New York Times editorial advocating that state lawmakers make aid in dying available to their residents. The editors point to the thoroughly and publicly documented 18-year record in Oregon, where aid in dying has worked as intended, giving peace of mind to dying Oregonians, without any cases of abuse or coercion.

Lawmakers in Washington, D.C., and at least 15 states have introduced bills to authorize the medical option of aid in dying since November when Compassion & Choices launched a nationwide campaign in honor of Brittany Maynard. The momentum also is galvanizing Compassion & Choices campaigns to pass bills authorizing aid in dying in New Jersey, Massachusetts, Colorado and California and to defend this legally recognized option in Montana, New Mexico and Vermont.

Compassion & Choices, the oldest and largest national non-profit organization committed to improving care and expanding choice at the end of life, is a leading advocate of aid-in-dying legislation in New York and around the country.

Below is a list of people testifying today:

1 Barry Williams – Glastonbury Lobbyist with Advanced Parkinson Disease
2 Charles Silbert – Ridgefield Cancer Patient
3 Karina Danvers – New Haven HIV/AIDS Patient
4 Barbara Mancini – Philadelphia Criminally Prosecuted
5 Huntington Williams – Cornwall Criminally Prosecuted
6 David McGuire – ACLU Attorney
7 Jennifer Siskind – Personal story
8 Herb Ross, MD – Lyme Physician
9 Tollie Miller – Bloomfield Story of death of friend
10 Rev. Barbara Fast – Greenwich Minister Unitarian
11 Gail Southard Canzano, PhD – West Hartford Clinical Psychologist
12 Phyllis Ross – Lyme Supporter
13 Tim Appleton – S. Windsor Executive Dir. Compassion & Choices CT
Reading Testimony of Sara Meyers – ALS Patient
14 Linda Alexander, MD – Windsor Physician
15 Shannon Sanford, RN – Seymour Registered Nurse
16 Lindsey Pellino – Death of grandfather
17 Rev. Josh Pawelek – Glastonbury UU Minister
18 Vandelay Mandohar, MD – Middletown Psychiatrist
19 Mary Anne Handley – Manchester Former State Senator
20 Rev. Doug Peary – North Haven Story of death of loved ones
21 Michael Mizzone – Orange ALS Patient
22 Rev. Jeanne Lloyd – Woodbury UU Minister
23 Max Fey – Farmington Story of death of father
24 Duane Leuders – Simsbury Attorney
25 Jane Zajac – Windsor Emphysema Patient
26 Debra Adamson – Death of mother
27 Joe Hoydilla – Middletown Death of Father from skin cancer
28 Thomas Platt – Hamden Roommate committed suicide
29 Ed Crocco – Higganum Supporter
30 Cynara Stites – Mansfield ACLU Board Member
31 Adlyn Lowenthal – West Hartford Supporter/activist
32 Sara Hambrick – S. Windsor Supporter/activist
33 Susan Duclos – Wallingford Retired Nurse
34 Douglas Wade – Bridgeport Mother died/terminal illness
35 Jody Rodiger – Manchester Faith leader
36 Judy Principi – Burlington Lost loved one to ALS
37 James Principi – Burlington See above
38 Steve Karp – NASW
39 Tessa Marquis – Milford Activist
40 Alice Oliver – Milford Supporter
41 Joan Geetter – Bloomfield Supporter
42 Al Smith – Brookfield Supporter
43 Corrinne Ferola – Bristol Supporter
44 Klaus Kingstorf – Manchester Supporter
45 Martin Legault – Marlborough Supporter
46 Michelle Maitland – East Hartford Supporter
47 Pamela Wheeler – Supporter
48 Stanley Greenberg – Manchester Humanist
49 Vic Marquis – Killingley Supporter
50 Wendy Wescott – Wesport Supporter
51 Patrice Jaskiewicz – Gales Ferry Supporter
52 James Brennan – Waterbury Supporter
53 Donna Scanlon – East Hampton Supporter
54 Judith Passmore – Middletown Supporter

-Testimony of State Rep. Kelly Luxenberg – Representing Manchester’s 12th District

Senator Coleman, Representative Tong, Senator Kissel, Representative Rebimbas and esteemed members of the Judiciary committee, I am State Representative Kelly Luxenberg and I am here today to speak in favor of House Bill 7015 AN ACT CONCERNING AID IN DYING FOR TERMINALLY ILL PATIENTS.

I know that this is a tough issue for many of us.  Even though I sit here before you today as a co-sponsor of this important piece of legislation, I didn’t always feel that way; I have had my doubts even over the last few years. When I started to think about it as a matter of individual choice, I realized what a personal and intimate decision it was….

I also draw my support from a deeply personal experience…

Three weeks before my parents got married, my athletic, exuberant father was diagnosed with early-onset Parkinson’s Disease.   Less than a decade later, he was laid off as an executive vice president at a bank and forced onto disability, he was maxed out on the medications that mitigate  his symptoms, he no longer could drive because he fell asleep at the wheel more than once, and he had to have me, his nine-year old daughter, pull him up from chairs, and help him in ways that no child should have to help a parent.  As his central nervous system progressively failed him, his dignity was lost.

A last hope and prayer came with the new pallidotomy operation in the mid-90s, but all was lost when the surgeon took experimental liberties that cost my father the ability to swallow and require a feeding tube, and prevented him from helping me with even the easiest of sixth grade math assignments.

Three months from the surgery that was supposed to give him new life, he was dead. It wasn’t the Parkinson’s or the operation that killed him per se, he had taken matters into his own hands.  His death was unattractive and undignified – he drowned in our local reservoir. He never learned to swim and was intensely fearful of the water, so there is an even sadder irony to the way he chose to die.  The next day, our local newspaper ran the front cover with his lifeless body freshly pulled from the water.

He indicated that he had no other choice to do what he did that day for the Parkinson’s and operation had robbed him of so much.

For years, I convinced myself his death was an accident, and he never would have chosen that kind of.
It wasn’t until my early 20s that I found peace with his death thinking he did have a choice and that he was very much in control that day, not that it was his unsteady gait – typical of the Parkinson’s – that caused him to slip multiple times and fall to his death. It was the last thing he was in control everything the last two decades of his life were involuntary; that he wasn’t as cold, terrified and alone as I had always imagined.

I am here before you today because even though death with dignity wouldn’t have applied to my father at that point in time, it is imperative that we give people choices at the end of their lives.  We have fought for decades to have the right to make our own decisions over our own bodies and this is no different – this is an issue all about choice, it doesn’t mandate any kind of action.

Eventually the Parkinson’s would have taken my father’s life, but what a different experience the end could have been for him, and for me as a survivor.  It only added another layer of pain for me and my family to never have closure.

Giving power back to people who have lost control over their bodies should not be determined by those of us who have not suffered serious mental or physical degradation.  People don’t like to talk about death, but it’s inevitable, and I hope in the end that I have the choice to decide what is right for me and my family.   Parkinson’s stripped my father of a life with dignity. Wouldn’t it have been great if in death his dignity could be regained?