Perhaps asking a newly-wed about her end-of-life wishes would provoke a stern reprimand from Miss Manners, but Madeleine Kunin, who recently remarried, answered my questions frankly and openly at her lakeside Burlington home as the late afternoon autumn light glanced off the waves of Lake Champlain. “Especially as you get older, you start thinking about these things,” Kunin says in a television ad campaign this summer for the Vermont organization Death with Dignity. Three of Vermont’s elder statespersons – former Governors Phil Hoff, Madeleine Kunin, and Lt. Governor Barbara Snelling – are taking the lead as prominent public voices in support of the campaign. Though the trio doesn’t presume that a bill, even if introduced in the 2007 session, would actually pass this year, they each unequivocally believe it is high time that Vermonters should have this option. “It is,” Snelling said, “compassion.”
Comes a Time
On a rainy Thursday morning the 82-year-old Hoff playfully greets me at his Burlington law office by saying that he’d much rather have gotten in a round of mid-October golf.
“I think I’m representative of a large number of people who, while they’re alive and have some quality of life are anxious to continue life, but who, when that quality of life gets down to zero, would just as soon leave this world. Well, you just can’t do that,” explained Hoff, noting that today’s extended life spans are one of the factors why “the time has come” for Death with Dignity. “But, some people do get to the point where there is no quality of life, who have six months left to live and are suffering and in pain. It just seems to me we’ve reached a point that, as a society, we recognize that first, death is going to come to all of us – and a person ought to be able to choose to leave this world in dignity and not in pain and suffering.”
“This bill has provoked, and I hope will continue to provoke, a really vigorous debate on the question of end-of-life issues,” observed Kunin. “These discussions are important as medicine gets more and more sophisticated, as we age, and more of us are going to end up being old and frail.
“The whole purpose in the medical profession is to preserve life; failure is equated with death and vice versa. So the idea of heroic measures is automatic, and not often put in the context of ‘is this appropriate for this particular person at this stage of her or his life?’,” Kunin continued, whose son is a doctor. “The possibility exists where the pain and the hopelessness are so overwhelming that simply prolonging suffering is cruel.”
“I don’t know if you’ve gone through this, but I have,” Hoff said, the anguish audible in his voice as he tells of watching his cousin’s demise from Parkinson’s disease. “It was pretty tough. Her quality of life was absolutely zero.” In the final phase of her life, as she steadily suffered from her illness, she also kept getting pneumonia, for which the doctor would treat her with antibiotics, thereby allowing her to continue on, albeit in a comatose state, indefinitely, Hoff explained. She did not have a living will or advance directive in place before losing the ability to make her wishes known. “I would go to see her, standing by her bed repeating her name, sometimes as long as fifteen minutes. Finally, she’d open her eyes. I’ve never known whether she knew who I was or not.”
What Hoff is sure about is his conviction that people ought to have the right to end their life within legal guidelines, if the prognosis is terminal. “I saw firsthand the indignity and the suffering of a person and it really had an impact on me,” he said solemnly.
Noting that she has been fortunate not to have had close experience with someone dying from a long, painful illness like cancer, Snelling has gone through the sobering reality of witnessing the incapacitation and eventual death of her mother due to a series of strokes – as well as suffering a serious stroke herself years later. The manner of her mother’s death, in which she died unable to breathe or eat, and the traumatic effect that it had on Snelling, is apparent as she recalls the circumstances. “I feel certain that she would not have consented to ending her life,” she reflected. Of her own encounter with a stroke, Snelling recalled that she was most certainly not thinking in terms of end-of-life choices. “I was focused on doing everything I could to stay alive and stay in charge,” she said with a rueful chuckle. “Speaking now, from a very healthy perspective, I think it’s an option that we should have… If I were in the situation as described – the six months terminal diagnosis and significant pain, I would like the option. I’m not sure I would ever take it, but I think the option is a comfort, to know that you could if that’s the way you felt at the time.”
Gesturing to a picture in Snelling’s Shelburne living room, I inquired where she thinks her late husband, former Governor Richard Snelling, would have stood on the issue. Noting that she can’t know for sure, Snelling said without hesitation that she suspects that he would have supported Death with Dignity, given his libertarian belief in the rights of the individual.
We Need to Talk
“Whereas sometimes people suffer because the medical community can’t let go,” Kunin said, sometimes family members can’t, either, she noted. “It’s very difficult for a family member to say ‘stop’ – very difficult,” she quietly said. “It’s still very hard, no matter how many documents you have, for a family to make that decision. In the best of circumstances it’s not an easy decision. While you are alive you have a responsibility to let your loved ones know how you feel. What you don’t want to do is leave them with a feeling of guilt.”
All three have made their wishes about end-of-life decisions known to their children – Kunin smiled and added that she had better tell her new husband, too. “We can’t control the moment of our death,” she said, “so the best you can do is give directions.”
Snelling shared the outcome of the discussions she has had with her children, noting the fact that the two who live in Vermont [Mark and Diane] “are in favor of my being able to make a decision,” she said. “But, interestingly, the daughter who is not here couldn’t understand that. She said she would always be fighting to have me stay alive – which is reassuring; that’s nice!” Snelling laughed heartily. Depending on what the ultimate circumstances were, Snelling continued, her out-of-state daughter might feel differently. “She’s strong-minded,” Snelling chuckled, adding that it’s a quality she no doubt gets from her father. Or perhaps her mother.
While no one – friends, colleagues, clergy, doctors – has challenged any of the three about their advocacy for Death with Dignity (“maybe they’re too polite to say so,” smiled Kunin), none of them is under the illusion that there is not strong opposition to the idea. “I haven’t had one person say ‘you’re crazy, it’s a form of suicide’ – not one. That doesn’t mean they’re not out there,” Hoff acknowledged.
According to Kunin, some people fear that it could be used to hasten the death of people because they are deemed a burden to society or to their families, that they could be taken advantage of in a moment of weakness. She noted that advocates for people with disabilities have been one of the most vocal groups in opposition, and that the fears they’ve expressed have been very powerful: “I can see where they’re coming from. There is a history of euthanasia [being used against the disabilities] community, which is a horrible chapter of history,” Kunin said.
“They are right to raise the flag! But they also have to look at the fine print here, which is very different. And I don’t think that we will slip from one into the other – I just don’t believe that will happen in a free society,” she maintained.
“I think this option would be rarely used. It certainly hasn’t been used a lot in Oregon,” Kunin continued. “It’s very narrowly circumscribed, with all kinds of safeguards – you have to walk through 25 doors before you get to your end point, so to speak – and that’s how it should be. I certainly would never support anything that would be abused or take advantage of people… Some countries have gone much further [than the Oregon bill] – perhaps too far. I’m not sure, from what I know of the Dutch system, for example, that I would support that. I don’t know if there are all the safeguards.”
Snelling noted the prominent objections of the religious communities. “They feel that it is taking a personal option that is not really allowed us,” she observed. “They don’t like the [term] death with dignity. [To them] it’s suicide, assisted suicide, and that’s to put a negative cast on it; suicide is not looked on favorably.”
Forecast for the Future
To Hoff, Kunin, and Snelling, it is more than likely that a Death with Dignity measure, based on the Oregon model, will indeed become law in Vermont. They differ in their level of optimism, however, with Kunin appearing to be the most conservative in her estimate of the speed with which it will occur here.
“It depends on the new legislators,” Kunin replied to the prospect of what traction the bill will get in the 2007 session. “From what I understand, there’s a slowly gathering constituency for it. But it’s important for the legislators to hear from their constituents, and I think that so far they’ve probably heard more from those who are opposed than from those who support it.
“I still think it won’t be easy to pass the law in Vermont. I think it’s an idea that will continue to grow and it may happen this legislative session, but I think it’s much too early to tell until we know the makeup of the new session. Sometimes, one or two people can exercise strong leadership on a tough issue and get it passed.”
According to Snelling, leading advocates for Death with Dignity believe that they would have a majority vote in the Legislature if someone were to introduce it and really push it in earnest. “They will hear from the Catholic Church, no question about it, and they will be accused of being immoral in having anything to do with it. And, that’s unpleasant to contemplate and I suspect that people would rather not have that confrontation,” Snelling explained. “People see it as controversial even though the polls show that Vermonters by a large majority favor it.”
In an effort to explain why Death with Dignity has not passed thus far in Vermont, Hoff replied, “You’ve got to understand how the Legislature operates. If they have a really significant issue in front of them [as they did in 2006 with health care], they don’t want to get embroiled in an issue that’s going to engender a lot of opposition which this has from the more conservative [elements] of the medical community and from some of the religious leaders.”
As for its future prospects in Montpelier, Hoff explained that there’s a maxim that says it generally takes three times around to pass a new idea. “It’s going to pass – it will pass either this year or next year or the year after; it’s going to pass. There’s no question about that. I think this past year probably a committee could have gotten it on the floor had one absent member been there. This coming session I suspect it will pass – there will probably be a lively debate on the House floor and then it will pass.”
Snelling added, “I suppose that there might be finger-pointing at people who vote for it and there might be campaigns against them for voting for it, so they don’t want to touch it. My daughter [Sen. Diane Snelling, R-Chittenden] agrees that it’s the right thing to do: she’s in favor of it – and has been right along – I think before she knew what my feeling was, she thought it was right. So, that’s one person in the Legislature [who would vote yes]!” she chuckled.
For Hoff, it might be said, the issue is a no-brainer. “I’ve been involved with a lot of issues in my time – some of them very controversial,” he added. “I don’t think it makes sense that this is a hugely controversial subject. Not in Vermont.”
I asked Snelling to consider hypothetically for a moment: were Vermont to pass a Death with Dignity measure today, how would the current national Republican Party – particularly with its more socially conservative elements – react? “I don’t think they would do much,” she said dismissively. “It was proven [in the Oregon case] that it is a state’s right, not federal. So, I assume it would be negatively mentioned and maybe they would say, well that’s just one more thing about Vermont!” she laughed. “From their point of view, Vermont does not make the right decisions.”
Living Legacies
How does each wish her or his legacy to be described when the history books are written? Snelling believes her legacy would have to reflect the fact that she exhibited leadership in a variety of causes, not just one issue. She does, however, single out her long-held pro-choice stand on women’s reproductive rights as an example of another controversial issue she met head-on.
Hoff said, “Giving every individual the opportunity to live a full, meaningful, productive life – that’s behind everything that I’ve attempted to do, and I feel very strongly about it.”
“We have no control,” Kunin mused, “over how we’re going to go down in history, and I don’t expect to control it; but one of the things I’d like people to know and remember about me is that I cared about individuals being able to live to their full potential – through education, through good health, good quality of life… And I guess I’d also like to think that I’ve been able to stick up for my beliefs. And this is one of the things I believe.
“If you’re living a public life the real joy of it is being able to create change – for the better, you hope. And I hope,” she says quietly, “in some small ways, though I never will know exactly what ways those will be that I’ve been able to do that.”
