MIDDLEBURY — At the same time that state lawmakers are trying to revamp the system by which Vermonters recover from illnesses, a group of citizens is urging the Vermont Legislature to allow terminally sick people the right to forgo treatment and end their own lives.
At issue is bill H.274, patterned after Oregon’s “Death with Dignity Act.” The proposed legislation — introduced last month in the House Health and Welfare Committee — would allow qualifying, terminally ill patients aged 18 or older the option of taking their own lives using a prescribed drug. Under the terms of the proposed law, the patient must:
• Be a Vermonter and have been diagnosed with an incurable, irreversible disease that would, “within reasonable medical judgment” result in death within six months.
• Make two oral requests in the presence of his or her physician — with 15 days in between. When the patient makes the request the second time, the physician must offer the patient the opportunity to rescind the request.
• Make a written request for the medication, a request that must be signed, dated and performed in the presence of two witnesses. Neither of the witnesses can be the patient’s physician, counselor, close relative or anyone who might benefit from the patient’s death. The written request can only be completed after the patient gets a second opinion on his or her diagnosis and prognosis. The patient’s physician must also inform the patient of all other end-of-life options, such as pain control and comfort care.
• Self-administer the drug, assuming all the preceding requirements are met.
The legislation would also require the attending physician to refer the patient to counseling if he or she was showing any signs of impaired judgment.
Some Vermont physicians are backing H.274, while others are opposing it.
Dr. Diana Barnard had run a family practice in Middlebury since 1994. In August of 2009, she and her business partner Dr. Will Porter began to channel their focus to serving patients with “life limiting” illnesses in their home settings.
It is a career journey that has seen Barnard and Porter meet people with some serious, chronic illnesses who might not otherwise be alive but for revolutionary new medical technology and drugs.
“We have made tremendous progress,” Barnard said. “We have developed medications and diagnostic tools and therapies that have made a tremendous difference in how we live the later chapters of our lives. We no longer are likely to die from our first heart attack, or after our first diagnosis with cancer, or when we first develop chronic lung disease. We are now able to manage and help people live with those diseases for much longer periods of time, which is a blessing and a miracle.
“But it has a consequence — and that consequence is that as we live with illness and we live longer, it is more likely that the final chapter of our lives is going to be dominated by several medical problems that need to be managed — and that can begin to take a toll on us, physically and emotionally. I think it leads us to an opportunity to look at medicine differently.”
Barnard believes patients should be given a stronger say in how — and whether — the new medical technology should be applied to them.
“What I want to do is provide information and tools, and what patients decide to do is really up to them,” Barnard said.
She noted a difference between “living well” and simply eking out an existence.
“My practice, and I think every doctor’s practice, is about helping people live well, for as long as possible,” Barnard said. “But we also must realize that all life comes to an end, and that dying well is just as important as living well.”
She believes Death with Dignity legislation could provide another option for some, terminally ill patients who are suffering in spite of the best possible support system.
“If all of those tools bring someone to a point that the suffering cannot be well controlled, then I believe the patients should have the right to ask physicians for help in controlling the time of their death,” she said.
Dr. David Babbott is a former physician and retired professor of medicine (26 years) at the University of Vermont. He is also on the Patient Choices Vermont board of directors.
Babbott said most of the deaths he witnessed during his career were “peaceful deaths” — but not all. Some of them, he said, were prolonged and came with great suffering for the patients as well as for their families.
“Over time — not overnight — I have become convinced that patients should have the right to declare when ‘enough is enough,’” he said, “and if they so choose, to control the timing and manner of their dying.”
Babbott acknowledged the highly charged, emotional nature of the Death with Dignity debate. He said he respected the rights of people who would not want to take advantage of the voluntary law, but “rejects their right to prevent those of us who have different beliefs, from living out our own beliefs and values. Diversity is a hallmark of democracy, and it should be revered.”
Participating physicians, Babbott said, would not face any sanctions for complying, or not complying, with the new law.
Oregon enacted its Death with Dignity legislation in 1998, after a four-year process that began with a public referendum and included various legal challenges.
George Eighmey was a strong advocate for Oregon’s law as vice chairman of the Oregon House Judiciary Committee and senior Democrat leader from 1993 to 1999. It was a time during which the Oregon Legislature passed the Death with Dignity Act, Medicinal Marijuana and Alternative Medicine laws. He served as executive director of Compassion & Choices of Oregon, an organization “dedicated to providing nonjudgmental information on end-of-life options.”
Eighmey conducted a speaking tour of the region last week at the invitation of Patient Choices Vermont, during which he explained Oregon’s law and recommended the Green Mountain State follow suit.
Eighmey said Oregon physicians have written 818 prescriptions for lethal medication since that state’s Death with Dignity law went into effect. He noted 525 patients, between the ages of 24 and 94, chose to ingest the medication. There have been three cases in which the medication did not immediately prove lethal, according to Eighmey. In all three circumstances, the patients had medical conditions — or had taken another drug — that prevented the lethal dose from taking full effect.
He said 88 percent of the Oregonians who have used the law were in hospice care at the time they used the medicine.
Eighmey added 25 physicians and five pharmacies agreed to cooperate with the new law when it was first enacted in 1998. Those numbers, he said, have currently grown to 1,150 physicians and more than 150 pharmacies.
It has become clear that Oregonians who have used the law have been making their own decisions, according to Eighmey. Critics of the law had voiced concerns that the patients might be pressured into ending their lives by relatives wanting to preserve their inheritance or relieve themselves of a caretaking burden.
“It’s the children, or the husband or wife, who are saying, ‘Please, one more chemo, one more radiation, one more trip to Mexico for alternative medicine,’” Eighmey said.
“It is generally the loved one who says, ‘I know you want to take care of me, I know you love me, but this is my choice; please let me make the choice,” he added, alluding to terminally ill patients who have grown weary of pain and treatments prolonging poor quality of life.
Eighmey pointed to polls indicating that neither support of nor opposition to the Oregon law has been running along party lines.
“When you are facing death, politics go out the window,” Eighmey said.
Still, Death with Dignity legislation continues to have a solid network of opponents, some of whom were on hand at a March 3 gathering on the issue at Middlebury’s Town Hall Theater.
Longtime Middlebury-area physician Dr. Alan Covey, now retired, voiced his concerns about the proposed new law and noted a similar piece of legislation failed to win support in Vermont in 2007.
“It does take tremendous courage to face a terminal illness,” Covey said, echoing remarks he made in 2007 about H.44. “Nevertheless, I have seen patients and families find that courage again and again. I have seen relationships grow and deepen in the presence of love that is willing to suffer and faith that recognizes we do not rightly have, nor do we need to have, final control.”
He argued that living wills and durable power of attorney provisions can already spell out patients’ personal medical decisions without a new law.
Covey said the new law could represent a change in the physician’s primary identity as “healer.”
“Ultimately, I believe it comes down to this: I do not have the ability to give life, and I do not have the right to take it,” Covey said.
Middlebury resident John Schmitt recalled his mother’s diagnosis in December of 2008 with terminal cancer. Physicians gave her two months to live, according to Schmitt.
“Twenty months later, my family and I were still acting with compassion toward her,” Schmitt said. “She died naturally, and, in my opinion, a dignified death.”
Schmitt added, “We, the people in Vermont, are not a laboratory; we are not a statistic.”
Reporter John Flowers is at [email protected]