End-of-Life Choice, Palliative Care and Counseling

Vermont

Mar 26, 2013Dedicated to a Cause

by Barbara Coombs Lee
March 26, 2013

Last Wednesday, March 20, the Connecticut Assembly’s Public Health Committee began its consideration of a bill modeled after Oregon’s Death with Dignity Act. What a day! In my 22 years of legislative work, this hearing was the most grueling — and the most inspiring — I have ever witnessed.  Compassion & Choices volunteers and supporters showed themselves to be as passionate, judicious, intelligent and dedicated as citizens can ever be. They are committed to a world of justice and mercy. And they trust in democracy to make it so.

They came because they want choice and control in their own mortal endings. But mostly, they came for others who could not — their neighbors and loved ones and people unknown to them. They came that others need not suffer against their will, and that all may have the opportunity to face death in comfort and peace of mind. My heart swelled as I sat with them and heard the witness of these decent, altruistic, dedicated people.

The day began early, as aid-in-dying supporters travelled hours to Hartford by bus, car and train to be in line by 7:00 am.  Sign-up began at 9, but being in line by 7 helped ensure an opportunity to speak. The hearing began at 10 and our bill, Compassionate Aid in Dying for Terminally Ill Patients (HB 6645), came up about noon. Representative Betsy Ritter, the bill’s chief sponsor, spoke with eloquence and authority. Other legislators followed, and then the committee shifted gears and heard unrelated bills.

For many hours our supporters kept each other’s spirits up as they sat patiently through testimony about nursing technicians, dental hygienists, something called advance practice collaboration agreements, and tattoo artist licensure.

Some of our valiant and dedicated supporters just had to leave when their bus departed or their backs gave out. But others stayed until 1 am for their chance to speak. Yes, you read that right — they endured this process from 7 am until 1 am without complaint!!

Here are a just few of the heroes:

Shannon Sanford, a Yale-educated nurse who did her masters thesis on Oregon’s Death with Dignity Act.  ”Compassion & Choices were great to me when I was working on my thesis.  I can stay to the bitter end,” she told us. She had to, attending the entire 15-hour hearing as the last person to testify at approximately 1:30 am.

It fell to Shannon to present the committee with letters from all over the state. The stack was nearly a foot high, making a thump on the table.

Placing her hand on this tower of paper, Shannon said:  ”I brought my friends who are all in support of House Bill 6645″.  A legislator asked, ”I have to know, how many people signed letters?”  Shannon had a snappy response despite sitting 15 hours in a hearing room:  ”I stopped counting after 1500.”

Hunt Williams traveled over an hour to the state Capitol and waited twelve more to tell his story.

Hunt told the committee the story of his manslaughter arrest for merely cleaning a weapon his terminally ill friend, John Welles, used when he was dying of cancer. Only due to the overwhelming support and advocacy in his community of Cornwall, Connecticut, was Hunt sentenced to accelerated rehabilitation, a process that took over a year. The committee and the entire room sat in complete silence as they listened to Hunt’s riveting experience.

“Thank you sir, thank you for giving testimony.  I think I was taken aback by what you had to say,” a stunned co-chair of the committee, Senator Terry Gerratana, said.

Gloria Blick, aged 91, is a passionate advocate for end-of-life choice, as is her son Dr. Gary Blick.

When called to testify, Gloria and Dr. Blick held hands and both walked confidently to the microphone and sat together supporting each other.  Luckily, Gloria has not had a significant illness, but with her active volunteerism in the senior community, she has witnessed first-hand the pain and suffering of those at end of life, and it disturbs her greatly.

She made it clear to the committee she had been too active and too well to see her life end in a slow, relentless spiral of deterioration. Nor would she want her family, including Dr. Blick, to suffer unnecessarily with her.  ”I would never want to do that to my son,” she said.

Lillian Kaplan sat for hours waiting for her opportunity to speak out in favor of HB 6645, offering moving testimony regarding the difficult and painful death of her son-in-law Steven Kahn, who wanted to die on his own terms.  Lillian read into testimony a letter Steven wrote prior to his death.

“I am writing to you so you will not have to wonder…I’m not asking for your approval, only that you honor my judgment,” he wrote.

At the conclusion of her testimony, the Senate Chair of the Committee respectfully asked her age:  ”Well, in a year and a half I will be 100.”

Lillian, Gloria, Gary and Shannon and so many others showed themselves to be amazing and inspiring advocates. It is an honor to be able to work beside them for choice and control at life’s end.

Mar 22, 2013Support grows in Vermont for an end-of-life bill

Janice Lloyd, USA TODAY
March 22, 2013

Most states ban physician-assisted death, but a movement is growing to give terminal patients the right to choose their fate.

Dick and Ginny Walters envision a new approach to dying for Vermont residents: They want terminally ill patients with a prognosis of less than six months to live to have the right to request and take life-ending medication.

The Shelburne, Vt., retirees — he’s 88, she’s 87 — say they are both healthy and fit. They have devoted the past 10 years to the cause, meeting with supporters in their living room to track legislation — including the bill “Patient Choice and Control at End of Life.” It passed the Vermont Senate in February and goes to the House this month.

Although assisted dying is illegal in most states and opponents have been fighting proposals for the past 15 years, support is growing in Vermont and other parts of the Northeast. Connecticut and New Jersey legislators are also examining measures.

“It makes ultimate sense to people who have lived their lives in an independent way and don’t want to be reduced to an infantile existence and having other people make decisions for them,” Dick Walters says. “It’s taken us a long time, but we think Vermont will do this now.”

Vermont would be the first state to pass a doctor-assisted-death bill through the legislative process. Oregon and Washington voters passed similar bills in voter referendums. Massachusetts voters defeated a measure, 51% to 49%, in November.

“We may have lost this time in Massachusetts, but we won in the region,” says Barbara Coombs Lee, president of Compassion and Choices, a non-profit group dedicated to protecting the rights of the terminally ill. “I think the movements in the other states are evidence of that. Vermont is close to passing. In subsequent efforts, Massachusetts will have a leg up.”

Proponents of the Massachusetts measure were outspent 5 to 1 by religious, medical and disability groups, including the Roman Catholic Church, says Coombs Lee. Cardinal Sean O’Malley of Boston said in a statement after the vote that “we can do better than offering them the means to end their life.”

Walters says the Vermont mind-set is different: “Vermonters have a strong belief for respecting each other’s beliefs.”

When his time comes, Walters says, he doesn’t know whether he’d choose to end his life, but his father asked him for help “and it wasn’t legal to do it. It was really hard on me to not be able to help him. I’ve been bothered a long time by his suffering.”

He says a group of Vermont friends, including many retired physicians, got the idea to organize after Oregon passed the first referendum allowing physician-assisted dying in 1997. Oregon’s law went into effect in 1998, and a similar law went into effect in in Washington in 2009.

The Oregon law requires a patient to get two physicians to say he or she is terminally ill (expected to die within six months), to be mentally competent, an adult 18 or older and a resident of the state. The patient has to be physically able to swallow the medication; someone else can’t administer it. The written request for the medication must have two witnesses, one of whom cannot be an heir, and the patient must also make two oral requests.

“There are two waiting periods,” says Peg Sandeen, executive director of Death With Dignity, an advocacy group that helped write the laws. “The person is certain about what he wants.”

Sandeen says when the U.S. Supreme Court ruled 6-3 in favor of Oregon voters in 2006 the ruling paved the way for other states to create their own laws.

But fights continue: In Montana, a bill is pending that calls for imprisoning and fining a person “who aided or solicited a suicide.” The Montana Supreme Court ruled in 2008 that a state law protects doctors from prosecution for helping terminally ill patients die.

Physician Diana Barnard, a hospice and palliative care doctor in Weybridge, Vt., says “citizens are telling us they want this bill to pass. My professional responsibility is to supply the medication.”

Diana Barnard, a physician, says, “Recognizing that the end of your life is coming is important for so many reasons.”(Photo: Handout)

She says most patients want to know when they’re dying, but most doctors don’t know how to have that conversation.

“Recognizing that the end of your life is coming is important for so many reasons,” she says. “You get a chance to say goodbye to people, have closure on big issues. I always ask patients: ‘If time were short, what would be important to you?’ It’s criminal to not let people do this.”

Another part of the Oregon law requires the Health Department to track the number of people who request the medication, those who take it, and the doctors involved. In 2012, 115 requested it, a record number. Among that group, 77 took it and died. Sixty-one doctors filled orders for medications, one fewer than in 2011.

Dick Walters isn’t surprised more patients didn’t take the medication they requested.

“Just having the choice and knowing the medication is available can make a huge difference,” he says. “I think this thing will change how people talk about death and improve end-of-life care.”

Even in hospice care, when patients have stopped taking medical measures to prolong life, someone else administers the medication that helps control pain and eventually aids in ending life.

“That can leave an enormous amount of guilt on the family member,” Coombs Lee says.

“Laws like the one in Oregon relieve the family of the responsibility. It empowers the patient to be in control — to let the family be there, and say ‘Hold me while I do this.’ “

Feb 15, 2013Moving Forward: Vermont Senate Clears Aid-in-Dying Bill

by Compassion & Choices staff
February 12, 2013

State Leads the Pack of Numerous Legislatures Advancing End-of-Life Choice

The Vermont Senate voted on Valentine’s Day to pass a bill to allow mentally competent, terminally ill Vermonters the option of aid in dying. After days of debate on this important issue, the bill easily cleared the Senate 22-8. The bill now moves to the House of Representatives for consideration.

“The Senate’s passage of this bill is a significant advancement in expanding end-of-life choice. It positions Vermont to become the first state to approve aid in dying through the legislative process,” said Kathryn Tucker, Director of Legal Affairs for Compassion & Choices, the nation’s oldest and largest nonprofit working to improve care and expand choice at the end of life. Tucker testified before the Senate Judiciary Committee in favor of the bill on February 6.

“The bill affirms the soundness of aid in dying as a valid end-of-life option for terminally ill adults, provides clear protection to physicians who provide it, and leaves the regulation of the practice to professional practice standards, which is how all of medicine is governed,” said Tucker.

Vermonters have been campaigning to establish aid in dying as an open, legal medical practice for ten years. Patient Choices Vermont, the state’s leading advocacy organization on the issue, is leading the grassroots effort to make Vermont the first state legislature to establish aid in dying.

There is significant support among Vermonters, and throughout the nation, from Americans who want the ability to control how they spend their last days of life.

A poll conducted last spring of Vermont voters found overwhelming support: 74 percent favored allowing a mentally competent adult, who is dying of a terminal disease with no hope of recovery, the choice to bring about his own death. Only 17 opposed. People want to know that their doctors can support their medical decisions without risking sanction. This bill allows medical decisions to be made where they belong – privately between patients and doctors, in consultation with family members if the patients choose.

The vote provides a boost to Vermonters who have worked long and hard for this bill and it adds momentum to the national movement.

“It’s exciting to see Vermont, after more than decade of fighting for the right to aid in dying, make such progress. Compassion & Choices will continue to work with Patient Choices Vermont and our large grassroots base across the state to support this bill as it moves through the House,” said Tucker.

Bills to support aid in dying are also moving in Connecticut, New Jersey, Massachusetts and Kansas. Other states are advancing strategies to make aid in dying expressly legal. Compassion & Choices is mounting full campaigns in six states and supporting efforts in several others.

We can advance these bills … with your help. Please sign our petition for the Compassionate Aid in Dying bill; the petition is on the homepage of CompassionAndChoices.org.

Feb 12, 2013Compassion & Choices Applauds Vermont Senate’s Important Vote to Advance Death With Dignity Bill

by Compassion & Choices staff
February 12, 2013

(Montpelier, VT) – The Vermont Senate today voted 17-13 to override the Senate Judiciary Committee’s recommendation on S.B. 48, a bill to allow mentally competent, terminally ill Vermonters the option of choosing aid in dying. The following statement can be attributed to Kathryn Tucker, Director of Legal Affairs for Compassion & Choices, the nation’s oldest and largest nonprofit working to improve care and expand choice at the end of life. Tucker testified before the Senate Judiciary Committee in favor of the bill on February 6.

“Today’s vote is an important step for patients, families and doctors who support choice and autonomy. The Vermont Senators’ vote reflects the views of a great majority of Vermonters, who overwhelmingly support aid in dying. Citizens want to control their lives, up to the moment they die, without government interference in their private healthcare choices. Today’s Senate vote supports giving individuals the opportunity to make deeply personal medical decisions based on their own values and beliefs.

“We are pleased that the full Senate will continue debate on the aid-in-dying measure. Beyond Vermont, end-of-life choice is advancing in at least seven other states this year.

“Compassion & Choices is proud to work alongside Patient Choices Vermont and our many supporters throughout the state who, along with Governor Peter Shumlin, were instrumental in this important legislative victory.”

Compassion & Choices provides support, education and advocacy to improve care at the end of life. To request client services or for more information, call 800.247.7421 toll-free or visit www.CompassionAndChoices.org. All services are free of charge, and confidentiality is strictly protected.