End-of-Life Choice, Palliative Care and Counseling

Heartfelt Testimony Heard From Both Sides of Patient-Directed Death Billby Sonja

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by Andrew Stein
VT Digger
January 29, 2013

Since 2003, the Vermont Legislature and the public have wrestled with a contentious bill that would allow terminally ill patients to take their own lives with lethal prescription drugs. Not one version of this bill has ever made it past the House or Senate floor — not even last year when the legislation enjoyed tri-partisan support in the Senate.

But before the 2013 legislative session began, Gov. Peter Shumlin told Vermonters he was confident that this year the bill would pass. In tune with the Democratic chief of state, the blue majority is honing in on the legislation this week.

Every day, from Tuesday through Friday, the Senate Health and Welfare Committee — comprised of four Dems and one hybrid Progressive-Democrat — is slated to hear testimony from a range of experts and stakeholders.

On Tuesday, the committee began the hearings with statements from Attorney General Bill Sorrell and former Gov. Madeleine Kunin, who both support the legislation. The day ended with a public hearing that attracted throngs of supporters on both sides.

Throughout the week, the committee will hear testimony from leading lawmakers from Vermont and Oregon, where such a bill was enacted in 1998. Medical professionals and hospice care specialists will speak to the committee. And the week will cap off with a visit from the first and only female governor in Oregon’s history, Gov. Barbara Roberts, whose tenure ended in 1995.

Addison Sen. Claire Ayer, who chairs the Health and Welfare Committee, told VTDigger that the Senate would build off last year’s bill. Frequently referred to as “Death with Dignity,” the legislation, for the past several years, has officially been titled “An Act Related to Patient Choice and Control at End of Life.” After this week’s testimony, a group of senators plans to introduce a bill.

In an interview Monday, Sorrell pointed to what he views as a safety net to prevent the abuse of end-of-life measures. Patients would need to be diagnosed by two physicians as being terminally ill with a prognosis of death within six months. Health care providers would be able to opt out of having to make the diagnoses.

Patients with mental disorders, such as depression, would not be eligible, and all participating patients would have to be be enrolled in palliative care or undergo a palliative care consultation.

Dick Walters, president of the nonprofit Patient Choices, and his wife Ginny Walters. at the Statehouse hearing Tuesday. Walters has led an effort to pass death with dignity legislation in Vermont for more than a decade. Photo by Andrew Stein

Under the bill, after a patient makes an initial request to end his or her life, a physician would have to wait at least 15 days for a reaffirmation from the patient and then offer the patient a chance to rescind the request. The request would need to be signed by two witnesses who are not relatives of the patient or an acting physician.

Ultimately, said Sorrell, the legislation sets the framework for the patient to make his or her own informed choice.

But many medical professionals and Vermont residents see numerous ways that such legislation could be abused or used to harm vulnerable members of society. Arguments against such legislation range from wrongful medical practices to the potential for mentally ill patients to slip through the legislative cracks to commit suicide. Other arguments venture into the realm of religion and God.

Heartfelt testimony

Kunin delivered a 10-minute speech that clearly resonated in many citizens, legislators and journalists gathered in Room 11 of the Statehouse — evidenced by the tears and choked-up voices of many in attendance.

She put the proposed measures in the context of her life, having recently lost her elder brother Edgar May, the Pulitzer Prize-winning journalist and former Vermont legislator. After suffering a stroke and its aftermath, Kunin told the room, her brother was ready to die.

“He was … in the dying process, but he made it very clear that he did not want to prolong it,” she said. “He did not want to live a life that was unsatisfactory to him.”

May articulated this sentiment to his family and his doctors, and they respected his wishes, she said, although no such life-ending measures such as the proposed bill Vermont would enact are present in Arizona, where he passed away.

“I think the greatest respect that one can show a loved one is actually letting a person go when they decide it is time to go,” she said. “It is hard. It is not an easy thing to do, but it is the right thing to do.

“My brother and I didn’t always vote the same way, but I’m quite convinced if he could, he would have testified today. And I’m quite sure we would have voted the same way: in favor of patient choice.”

She acknowledged the many questions and concerns surrounding the bill.

“How do we truly respect a patient’s choice? How do we assure that a patient is not pressured to take her or his own life? And does not feel that he or she is being a burden?” she said. “How do we guarantee that all other options have been exhausted? … And how do we assure the patient is not determined to take his or her own life for the wrong reasons, such as suicide?”

The answer, she said, is to follow Oregon. Washington passed similar legislation in 2008.

The legal protections that would be in place, she argued, are sufficient to protect against the perils that are frequently voiced in objection to the legislation.

“My father committed suicide when I was 3 years old, and I know what suicide can do to a family,” she said. “If we were really intent on reducing the incidence of suicide, we would go into the question of gun safety.”

Sorrell followed Kunin with powerful prose of his own.

“It is time to address this issue, and Vermont has a long and proud history of not being afraid to either lead the nation or be close to leading the nation on issues that relate to civil rights, personal rights and personal privacy,” he said, giving a long list of examples, such as Vermont was the first state to outlaw slavery and the first state to allow for universal male suffrage.

“I think the right to make an informed decision about the end of your life when you are terminally ill and you have all of your faculties about you, the option to be able to make that choice is a simple one; I think it’s a personal right,” Sorrell said. “I think it’s a hugely private right. And there are people I respect who oppose people having this opportunity, and they are entitled to those opinions.”

Later that evening, many Vermonters would voice those exact opinions.

Hundreds crowd into the House Chamber

Tuesday night, more than 200 ardent supporters and opponents of the bill filed into the House Chamber. They brandished blue stickers that said, “I support the Death with Dignity bill” or bright orange stickers that said, “I oppose doctor-prescribed suicide.”

In the center of the room sat the Senate Judiciary and Health and Welfare committees, with only one Republican member between the two of them — Sen. Joe Benning, R-Lyndonville, who has taken a liberal stance on social issues like decriminalizing marijuana.

Advocates on both sides provided brief testimony in favor of or against the bill. The advocates took turns: one for, then one against.

Dick Walters, president of the nonprofit Patient Choices, has led an effort to bring Oregon’s legislation to fruition in Vermont for more than a decade.

“When (this bill) is passed in Vermont, the whole continuum of end-of-life care will improve: better training of doctors … better palliative care, and physician-assisted dying as a final choice,” Walters said.“That’s what happened in Oregon after the law passed, folks. And that’s what will happen in Vermont.”

Many Vermonters in attendance took a different stance.

Robert Orleck, a pharmacist from Randolph, voiced strong resistance to the proposal.

In testimony before the Senate Health and Welfare Committee, Mark Kaufman, advocate for Vermont Care for Independent Living, brought up ethical issues surrounding a death with dignity bill. Photo by Andrew Stein

“This legislation will make physicians killers and nurses, social workers, pharmacists and other health care workers accomplices,” he said. “Legislators who pass this and the governor who signs it will be co-conspirators. … Putting a nice label like ‘death with dignity’ or ‘physician assisted’ is the only way these horrible acts of killing can be made justifiable.”

Maria Jakobeit of South Burlington said that such a measure would be disrespectful to loved ones and would strip them of their integrity.

“The message that is being sent is that it’s somehow justifiable to kill people, if there’s legal consent to support such an immense decision,” she said. “This dignity you’re talking about does not make sense to me at all. The word dignity means — in case you didn’t look it up in the dictionary — the condition of (feeling) worthy, a proper sense of pride and self-respect. Supporting this bill does not describe dignity at all. I am whole-heartedly against physician-assisted suicide.”

Mark Kaufman, advocate for Vermont Care for Independent Living, raised a number of ethical questions surrounding such legislation.

“We fully appreciate the additional safeguards that were written into this year’s bill … (but) what safeguards are enough? How many mistakes are acceptable?” he asked. “You are going to hear from some people over the next week who have been given a terminal diagnosis multiple times in their life. If at one of those times, they choose to die, is that OK then? When it really wasn’t a terminal diagnosis?

“What are the real choices? If I don’t have any health (insurance), do I get to choose to not bankrupt my family? Because I’ll just die,” he said. “If I choose to die, only to save my family some pain, have I made a reasoned choice, or am I now being coerced from a systemic matter?”