End-of-Life Choice, Palliative Care and Counseling

Barbara Coombs Lee

Montel Williams Speaks Out for Death with Dignity in New Issue of Compassion & Choices Magazine

CONTACT: Sean Crowley, 202-550-6524
seancrowley57@gmail.com

by Compassion & Choices staff
May 2, 2013

TV Host Calls End-of-Life Choice for Terminally Ill “Personal Decision”

(Washington, D.C.) Emmy Award-winning television host Montel Williams advocates for end-of-life choice, including aid in dying, in the spring issue of Compassion & Choices Magazine. Williams, who revealed in 1999 that he has multiple sclerosis (MS) and is an active healthcare advocate, expressed support for the right of terminally ill people with unbearable suffering to control the time and manner of their death.

Appearing on the cover and in the magazine’s “Voice of Choice” column, Williams states, “I do not believe people should be deciding what level of pain other people should endure, especially knowing they have no chance for recovery. It is a personal decision.” More

Huge Victory: Aid in Dying Preserved in Montana

by Compassion & Choices staff
April 17, 2013

Choice at life’s end scored a major victory yesterday! The Montana Senate defeated a bill to criminalize aid in dying, which was made legal by the 2009 state Supreme Court ruling in Baxter v. Montana.

As a Compassion & Choices supporter, you share credit for this impressive win. We prevailed against anti-choice zealots who worked for more than three years to undo the landmark Baxter ruling and quash the right of terminally ill Montanans to die with dignity on their own terms.

Make no mistake: This is a resounding victory for Compassion & Choices, our supporters in Montana and across the country, and for the principle of self-determination. Please take a few moments to savor it and the extraordinary effort that made it possible.

1) The Montana Senate actually reversed course to defeat HB505. We called it the “Physician Imprisonment Act of 2013″ because it would have incarcerated doctors for up to 10 years for providing aid in dying to terminal patients. Once predicted to pass, the bill was defeated instead, by a bipartisan vote of 27-23.

2) The Senate vote was the direct result of sustained on-the-ground activism by Compassion & Choices Montana. For more than two years, this dynamic campaign fielded staff and volunteers to alert residents to the threat of HB505. Its multi-tactical campaign included:

• an education drive that reached tens of thousands of Montanans in all corners of the state and encouraged them to telephone their legislators and otherwise make their voice heard;
radio and print ads urging Montanans to contact their legislators to oppose the bill;
outreach to newspaper editorial boards and other opinion leaders, and an aggressive letter-to-the-editor campaign;
mobilization of doctors to publicly oppose the bill and affirm their support for the practice of aid in dying;
in-person lobbying of lawmakers in Helena and their home districts;
social media and other efforts to spread the word and summon voters to action.

3) A high point in our campaign came when long-time supporter Dr. Eric Kress, a family physician at Western Montana Clinic, publicly disclosed that he had written aid-in-dying prescriptions for three of his patients since the 2009 Baxter decision.

Dr. Kress narrated our radio ad, appeared in print ads, authored a powerful op-ed for The Missoulian newspaper and delivered courageous testimony before the Senate Judiciary Committee. We cannot overstate the importance of his eloquent and persuasive support, and the influence it had on lawmakers and the public alike.

4) We backed up our advocacy with a poll of Montana voters, which confirmed that 73 percent opposed HB505 and 67 percent were less likely to vote for a legislator who supported it.

5) The victory maintains Montana’s status as the third state where aid in dying is expressly legal. That status was the direct result of Compassion & Choices’ landmark Baxter v. Montana lawsuit, which confirmed that physician aid in dying did not violate state public policy in Montana.

6) The victory also underscores the growing level of public willingness to take personal action to defend the right to death with dignity, and to oppose zealots who seek to pass draconian laws like HB505 and use misinformation, scare tactics, moral judgments and other means to deny people their most sacred rights at life’s end.

Special thanks goes to the thousands of Montanans who took action to defeat HB505, and to hundreds of Compassion & Choices Montana volunteers who worked the phones, knocked on doors, talked to neighbors and loved ones, and otherwise devoted themselves to make sure that truth and reason prevailed.

Without our shared commitment, HB505 would be law today. The fact that it isn’t is a true testament to the leadership of Compassion & Choices Montana and the dedication of our wonderful supporters.

BCL and JG Sign

Dedicated 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.

Support 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.’ “

Farewell to Booth Gardner

by Barbara Coombs Lee
March 18, 2013

Governor Booth Gardner died last Friday, after enduring the long relentless assault of Parkinson’s Disease. He was 76 years old, and he’d fought the progression of his illness valiantly for more than 20 years.  From 1985 to 1993 he served as governor of Washington and delivered much of lasting value to its people. In 2008, contemplating his own mortality, he brought them an aid-in-dying law and empowered them with the comfort of choice and control over needless suffering.

From September 2006 to November 2008 Booth led the Washington state campaign to pass a Death with Dignity law like the one in effect in Oregon since 1997. I remember well how his leadership emerged.

We had begun to think seriously about launching a Washington campaign for aid in dying in early 2006. With polling, focus groups and brainstorming we had begun to shape a proposed law and name it.  We thought we were the logical leaders. We were veterans of two successful campaigns and three intense years defending Oregon’s Death with Dignity law from the state legislature, Congress, the U.S. Department of Justice and litigants in federal court. Twice we had brought the argument all the way to the U.S. Supreme Court. We felt seasoned and successful.

Unbeknownst to us, Booth Gardner was also thinking about aid in dying, and starting to talk with his advisors and friends about a law to expand end-of-life choice. He thought this could be his final act of public service, and a lasting legacy to the people of Washington.

When we became aware of each other’s efforts, we met in the Seattle office of Compassion & Choices of Washington. Booth had not yet received the brain procedures that would later reverse some of his Parkinson’s symptoms and it was sometimes difficult to understand his speech. Nevertheless, he projected unwavering confidence and abiding good nature. He looked at us, the supposed “experts” seated around the table. Then he jabbed his thumb back over his shoulder with absolute authority, and said, “We’re going to have a campaign, and I want you all to get in line behind me.”  So we did.

Booth was a strong and compelling campaigner. In September 2006 he spoke candidly to attendees at the Annual Conference of Elder Law Attorneys:

Many of you know that I have been struggling with Parkinson’s Disease for the past 15 years and some may think that my interest in an Aid in Dying law is because I’m tired of dealing with it.

Well, it is discouraging at times but I have a lot of plans for the future involving new initiatives in education, new woodworking projects, more trips to watch a grandson’s baseball games and a chance to make new friends – just to name a few of the things that I look forward to in the years to come.

Just the same, my struggles with this disease remind me of my mortality every day.  I understand suffering differently now than I did before my Parkinson’s symptoms began.  I can more clearly imagine myself in the place of people who know they will not get better – that their end is very near – and whose only quality in life is misery.

So, I understand better now why an Aid in Dying law is so important both for people who might use it and for those who look on with compassion as loved ones suffer intolerably through their final days.

Working with Booth on his campaign was a joy and a privilege. His energy never flagged; his spirits never wavered.  He never persuaded the anti-choices folks to see things his way, but his good heart did persuade them of his high regard and good wishes.

He was as principled as he was kind, telling audiences, “While we respect other beliefs, we need to make it clear that we are bringing this proposal because of our own deeply held beliefs that it is the right and compassionate thing to do.”

Thank you, Booth, for your vision, your leadership, and your kindness.