End-of-Life Choice, Palliative Care and Counseling

New York

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.’ “

Aging in America Conference Features Panel on Rise of Unwanted Patient Care

What:  

Aging in America Conference panel sponsored by the Compassion and Choices: “What is Patient- and Family-Centered Care and What Happens When We Fail to Prevent It?” Patient-centered care should not include unwanted medical treatment and unnecessary suffering. Yet millions of Americans with advanced illnesses or who are terminally ill:

  • Suffer needlessly from undertreated pain and other agonizing symptoms;
  • Undergo pointless and costly invasive tests and treatments, often in their last days and hours; and
  • Have their treatment preferences or advance directives ignored or overridden by healthcare professionals and others.

Why:   

A new study published in Feb. in the Journal of the American Medical Association examining Medicare claims data found that between the years 2000 and 2009 treatment in acute care hospitals decreased while the usage of intensive care units (ICU) and healthcare transitions the last month of life increased. An accompanying Journal of American Medical Association editorial, “Changes in End-of-Life Care Over the Past Decade More Not Better,” concluded: “The focus appears to be on providing curative care in the acute hospital regardless of likelihood of benefit or preferences of patients. If programs aimed at reducing unnecessary care are to be successful, patients’ goals of care must be elicited and treatment options such as palliative and hospice care offered earlier in the process than is the current norm.”

Who:  

Mickey MacIntyre, Chief Program Officer, Compassion & Choices (read his testimony about how unwanted medical treatment at life’s end causes needless costly suffering before the Institute of Medicine’s Committee on Transforming End-of-Life Cares);
Lynn Feinberg, MSW, Sr. Strategic Policy Advisor, AARP Public Policy Institute;
Brian Lindberg, MMHS, Exec. Dir., Consumer Coalition for Quality Health Care;
Andrew MacPherson, Director of Government Affairs at Jennings Policy Strategies Inc.

Where:

Crystal C (West Tower/Green Level), Hyatt Regency Chicago, 151 E. Wacker Dr.

When:  

Friday, March 15, 1pm-2pm CT. If you cannot attend panel but want an interview Tuesday (March 12) Wednesday (March 13), Thursday (March 14) or Friday (March 15) with Compassion & Choices Chief Program Officer Mickey MacIntyre, please contact Sean Crowley: 202-550-6524, seancrowley57@gmail.com.

How:   

If you want to attend panel, but have not registered yet for the Aging in America Conference, please contact Jutka Mándoki: jutkam@asaging.org, 312-239-4834.

Going Gently Into That Good Night

By Daniel Krieger
Narratively
September 18, 2012

If you’re dying and don’t care to wait around for death, you can always book your own appointment. One simple way to do this would be to stop eating and drinking; another would be to stop life-sustaining medicine or devices. Assuming you can decide on your own, both of these methods are good and kosher as far as the law goes. A third approach, however, ventures into a grayer area of legal and ethical terrain—quaffing a lethal cocktail. In the business of ending your life, the means matter a lot more than the final result.

These were three things my mother, Ann Krieger, was pondering when she reached the final leg of her terminal illness last year, a month before Mother’s Day. After several years of fighting colon cancer, her doctor broke the news that the cancer had spread and the treatment was no longer working. There was no more they could do.

“You’ve got months, not weeks,” he said.

“What should I do?” she asked. “Should I end it now?”

“No,” he said. “You don’t want to do that.”

Actually, my mother kind of did, but the doctor referred her to hospice and gave her information about palliative care, a mode of treatment that relieves the pain of patients with serious illnesses. But in my mother’s case, the physical distress was less acute than the existential. Coming to terms with the fact that you’re going to die is elusive. For some people, like her, an attempt to manage the logistics could make it seem more doable. She and my father had given this some thought and had very specific ideas about how they wanted their end-of-life matters handled.

Six years earlier, horrified by what was taking place with Terri Schiavo in Florida, they sat my sister and me down to give us instructions. Should it ever come down to it, my parents told us, they wanted no artificial resuscitation, experimental procedures, machines or IVs—none of that stuff. They just wanted us to make sure they would be allowed to die naturally. “The idea,” my father explained to me recently, “is to be pain-free, comfortable and not go through a lot of unnecessary, costly and painful treatments which won’t help anyway.”

My mother had first-hand experience with this 21 years ago when her mom, my grandma Trixie, who was in perfect health at 85, was struck by a hit-and-run driver near her home in Queens. The doctors at New York Hospital said she had severe trauma in her brainstem and wouldn’t wake up. She was hooked up to a ventilator. More

NEJM: Letter to the Editor on Palliative Care Information Act

From the September 1, 2011 New England Journal of Medicine, a letter to the editor by Compassion & Choices President Barbara Coombs Lee:

To the Editor:

In their Perspective (May 19 issue),1 Astrow and Popp assert that New York’s Palliative Care Information Act was passed without “adequate consultation” with physicians. They bemoan physicians’ new responsibility to either share crucial decision-making information with their terminally ill patients or risk accountability for unprofessional conduct. As an advocate for dying patients, my organization, Compassion and Choices, pursues legislated mandates only as a last resort. The results of the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT)2 was the wake-up call that prompted a 10-year, $350-million push to educate physicians and coax them to inform patients about end-of-life options and to honor their final wishes. That Herculean effort spawned many new policy statements and a new subspecialty: palliative care. But the information most patients receive before consenting to treatment as death nears remains woefully inadequate. Dying patients cannot wait forever for physicians to grant them the tools of informed decision making about disease-focused and palliative treatments at life’s end. Astrow and Popp are correct in pointing out that information is just the first step in beginning a sensitive, intimate dialogue. But without an informed patient, a meaningful dialogue cannot even begin.

Barbara Coombs Lee, J.D., P.A.
Compassion and Choices, Portland, OR
bcl@compassionandchoices.org

Living a Life, and Choosing When to Die

THE NEW YORK TIMES
Letters to the Editor
July 14, 2011

Most of us would like to control the timing and circumstances of our deaths. Dudley Clendinen, who has A.L.S., has a plan to do so. He claims to have a way of ending his life that is “quiet and calm.” It appears to give him great comfort that he has the means to end his life if and when living becomes too unbearable. It also seems that this is a rational choice made after serious and thoughtful consideration.

Whether Mr. Clendinen will execute his plan is uncertain. Many dying people who obtain prescribed life-ending medicines (which they must take themselves) in states where aid in dying is a legally recognized option for the terminally ill never take the medicines.

Yet they and thousands of other dying people in those states are provided comfort knowing that this last-resort option is available. Every state should formally permit aid in dying for mentally competent dying adults.

DAVID C. LEVEN
Executive Director, Compassion
and Choices of New York

Pelham, N.Y., July 11, 2011

CLICK HERE TO READ AND COMMENT ON THIS LETTER AT THE NEW YORK TIMES