The former governor and activist speak with Street Roots about the lasting impact of Oregon’s Death with Dignity Act
Barbara and Frank Roberts were Oregon’s original power couple. By 1991, Barbara was culminating an already remarkable political career by becoming Oregon’s first elected female governor. Her husband, Frank, was a senior member of the state Senate and the Democratic president pro tem.
He was also terminally ill with the cancer that would take his life in 1993, too soon to see the landmark Death with Dignity Act he championed become law. The law allows terminally ill Oregonians to end their lives through the voluntary self-administration of lethal medications, prescribed by a physician for that purpose.
Three times Frank Roberts introduced a death with dignity bill into the state Legislature and each time it failed to clear committee. In the fall of 1993, a citizens’ initiative had picked up the banner, endorsed by Roberts as a promise to her husband. By November 1994, Oregonians voted in the Death with Dignity Act, the first of its kind in the nation.
An injunction followed, but it was lifted in 1997. That year, a ballot measure seeking to overturn the act was defeated by more than 60 percent of voters. Oregon had spoken.
Challenges came and went, all the way to the U.S. Supreme Court, but 20 years later, the law remains intact, serving as a model and inspiration for legislation across the country.
On Nov. 15, Washington, D.C.’s city council passed its own death with dignity act, joining five other jurisdictions to do so.
In October, Gov. Jerry Brown signed into law California’s end-of-life bill, making it the fifth and largest state to pass similar legislation.
On Election Day, Colorado became the sixth, as voters there overwhelming approved Proposition 106 which legalized assisted death for terminally ill patients.
In 2017, approximately 20 similar bills are expected to go before state lawmakers and voters, which means Roberts has a busy year ahead. She has championed the cause whenever called upon, testifying before lawmakers about the need for end-of-life autonomy and drawing from her own experience with the death of her husband. She has compelled the powers that be to catch up to the popular public opinion that supports death-with-dignity options.
In 2002, Roberts authored “Death Without Denial, Grief Without Apology: A Guide for Facing Death and Loss.” The book has become a frequent referral for hospice workers
Frank’s life and death also inspired Barbara Coombs Lee, the executive director of Compassion and Choices Oregon. Compassion and Choices consults people on end-of-life care and advocates for more legal options nationwide. Lee co-authored the Oregon legislation, and her organization is the beneficiary of Robert’s 80th birthday celebration dinner, Dec. 7, at Montgomery Park in Portland. Tickets are available online through Eventbrite.com
Together, Lee and Roberts spoke with Street Roots about the significance and lasting impact of Oregon’s Death with Dignity Act.
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Joanne Zuhl: You wrote in “Death Without Denial, Grief Without Apology” that we are so afraid of death in this culture, so geared toward medical miracle, we seem to have lost all sense of perspective. I’d like you to expand on that and also on the perspective you’ve gained over time.
Barbara Roberts: My husband had died just a year and a half before I started writing the book. And I had found how much people don’t want to talk about it. They want you to just get over it, get well, move on, get a life. They start saying it will be better. They really are uncomfortable with the whole subject matter. I was governor and he was a member of the state senate, and we were very open about the fact that he had a terminal diagnosis, and that he wasn’t going to do any further treatment. And we did it because we thought people should be able to start talking about death. None of us are getting out alive. And if we talk about it, we make the journey easier for everyone, for people who face death themselves, and families that experience the grief. Silence is not our friend on this subject!
For me, it just meant that I had to find a way to hopefully change my culture’s view on the way they were approaching death. We didn’t want to see grieving; we didn’t want to see weeping; we tried to find ways to cover it up. In other countries they have things like wailing walls and recognitions of the end of life, and here in this country, we were pretty hidden about how we handle it.
Barbara Coombs Lee: Because of the taboo, there is this pent-up demand, this pent-up yearning for people who do want to talk about it. So when you become known – as Barbara has become known – as a safe person to whom you can talk about death and dying, people flock to you. You go to a party and everyone has a story and they want to tell their story. And if they feel they can’t tell it to anyone else, they will tell it to the first safe person they meet, and I’m sure Barbara has had lots of experience with that.
J.Z.: I’m curious about those early conversations with your husband, Frank. Before he was sick, he was looking to pass a Death with Dignity Act in the State Legislature. What were those discussions like? How have your thoughts evolved since then?
B.R.: By the time Frank was declared terminally ill, he had already introduced the Death with Dignity bill three times into the Oregon Legislature, so it wasn’t new subject matter to us. I thought he was a little crazy the first time he did it because it was so controversial, and for a lot of his legislative colleagues, it was too scary of a subject to discuss even: the kind of thing you don’t want to talk about. Frank had been willing to talk about it and introduce legislation, and even though he was a senior member of the Senate and president pro tem of our party at that time, he could not move his colleagues on this issue, but he kept introducing it. By the time we got the terminal diagnosis, we’d had lots of discussions on the topic. He had had cancer for several years. One kind of cancer would go away and it would metastasize somewhere else. So we were accustomed to dealing with the threat of cancer for him. But this time it was pretty definite what was going to happen. So we felt comfortable talking about it.
We redid his will; we planned his memorial service; we took a trip to Hawaii just so the two of us could spend some time adjusting to the new diagnosis and preparing for the end of his life. So for us, it was an open discussion for all of the months that remained. We got the diagnosis that said you’ve got a year at most to live, and he lived it without any more treatment, without any more interference with his body physically. He just lived it.
J.Z.: No regrets.
B.R.: No. And he knew he had made the right decision. The Death with Dignity bill was circulating when he was dying, and he would ask me every few days, “How’s our bill going? How’s the signing going?” He knew it wouldn’t serve him, that he wouldn’t live long enough for that to be useful for him. But he wanted it so much for others, and the more he endured at the end of life, the more he wanted this for others.
J.Z.: The opposition spent $2.5 million against the Colorado initiative, although it passed by 65 percent of the vote. Who is the opposition against Death with Dignity?
B.C.L.: Pretty much all of the money came from the Catholic dioceses. I think $1.6 million came from the Diocese of Denver, and there are two other dioceses in Colorado that rounded it out. There was about $50,000 from Colorado Christian University, but the vast majority came from Catholic dioceses.
B.R.: They say Death with Dignity is a suicide and it’s a sin, and they will continue to oppose it. They’ve opposed it in every state where it’s been actively supported. They prevented it from getting through the Vermont Legislature for about 10 years. They were the chief opponent every place it’s on the ballot, and certainly we found that in California for a number of years. We know that’s where the major opposition is coming.
It is also that church that has raised the question about the Death with Dignity law harming people with disabilities. They raise it as if we’re going to try to exterminate everyone who has a disability. Well, I have a son who is autistic who, believe me, I would not support anything that did that. It is a fallacy. No one in Oregon with a pre-existing disability has used the law in all the years we’ve had it. It is not accurate, it is not honest, and it is a very cruel way to raise their opposition, but every time it comes up, that follows.
J.Z.: I read that the top reason people choose that is the loss of autonomy.
B.C.L.: People want to retain autonomy, but that desire is not in a vacuum. Why do they want to retain autonomy in this situation? Because they don’t want to endure unbearable suffering. I think people understand, maybe those people who have watched other people die, that pain can be controlled when they make a request; they’re not in pain. They might anticipate enormous pain. But they also understand what it might take to control pain; it might take medication that is so strong, that it makes you delirious. Or that is so strong that you have to be essentially sedated to unconsciousness. So when we say autonomy, I think that’s what they’re anticipating. They’re anticipating losing their entire self for an unknown period of time, because what it would take to manage their symptoms would reduce them to total unconsciousness or delirium or stupor.
B.R.: When you’re knocked out that like that, you may be alive, but you’re not living.
B.C.L.: It’s not like control for control’s sake. I think some people, when they talk about this, they think they’re control freaks. These people are not control freaks. They’re planners. They’re careful people who have looked adversity in the face many times in their lives, and they’re looking at this adversity in the face, and they do not want to be in a state they consider unbearable to them, unbearable to their family, and so they’re planning ahead.
A third of these people who have this insurance policy, if you will – their parachute, their safety blanket, or whatever – they don’t use it. It’s “I want this if I need it, if I’m stuck in a place worse than death.”
J.Z.: It seems it would be considered a brave choice, but I also wonder if I could make that choice myself. I think many people are still afraid of it, in some way.
B.R.: Nobody is absolutely certain, and that’s the reason a number of people get the prescription – they’ve gone through all the hoops, if you will. The prescription is in their home, and they can choose to use it or not to use it, and a number of people don’t use it. It’s there, so if they can’t bear either the pain or the disability or what’s happening to them as a human being, or when they’re ready to go, the medicine is there and they can take that prescription. It is a choice for the patient right to the very end, and I think that’s the thing that’s most amazing. In our lifetime, seldom do we get a final choice like that, and this is the place we get it in Oregon, and in Colorado now.
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J.Z.: It’s a question you’ve been asked many times, I suppose, but you would consider this option yourself should the time arise?
B.R.: Absolutely. I have been around. I had a nephew who died four or five years ago of ALS, Lou Gehrig’s Disease, one of the most debilitating, painful things to watch. If I knew that was my disease, I wouldn’t even hesitate about taking the prescription. It is brave, but it’s also practical. We like to maintain some control over our life. I watched my nephew die; I watched my husband die; I watched my mother die. I have a lot of desire not to watch that in myself. Nobody knows till they’re there and they’re making that choice, but I wouldn’t hesitate myself.
J.Z.: How did Brittany Maynard, contribute to this discussion around Death with Dignity? (Maynard, who suffered from terminal brain cancer, was an advocate for death-with-dignity policies in California. She ended her own life in Oregon in 2014 at age 29.)
B.R.: That was the brave woman. She is and was remarkable. As young as she was, to enter the end of her life with the kind of bravery she did, the openness and the commitment she had about how she used the time she had left and how she exited when that time was over. I have just never witnessed anything quite like her. Her husband and her mother have been magnificent. I don’t think there’s any question in California that had it not been for her and her husband that I doubt it would have passed in California.
B.C.L.: She definitely was the catalyst in the California campaign, and she’ll be a catalyst in all our future campaigns. We ran three ads in Colorado; the first one featured her. She orients people in a way that people relate to her. She’s so charismatic.
J.Z.: What you’re describing sounds to me how you’ve written about Barbara Roberts. Barbara Coombs Lee, I’d like to get your thoughts on having a politician of a governor’s caliber spearheading the effort.
B.C.L.: Just any politician wouldn’t do, but Barbara Roberts is a very special political personality. It’s because she leads with her heart and she’s honest about what’s in her heart that makes her so incredibly compelling, so incredibly heartwarming and persuasive about the things she believes in, and this is one of the things she believes in: having lived through it with Frank and how that could have been different. And she also has a position of authority, that this is responsible public policy.
J.Z.: You wrote that end-of-life care has become kinder, and it’s not just because people are talking about it.
B.R.: People talking about it did make it kinder. Now we have hospice in every county in the state. We have many more physicians who are recommending hospice to families and patients much earlier instead of waiting until it’s a week before their death and it’s a little late. So we have a much different medical community. The medical community that’s being trained in Oregon is getting end-of-life medical care understanding in a way that they were not trained in before. To face up that death is end of life; it is not failure. I think our medical schools in Oregon are doing a better job of preparing our physicians. I think the work that hospice has done with Compassion and Choices, and the Death with Dignity law, the working relationships, that has made a huge difference. The state stepping forward and examining how pain control is being used, or underused in some cases, that made death kinder for many people in our state. So the state has really examined end of life through the lens of a much more open culture than we had every experienced before, so I don’t have much question about how different it is, how much better it is, how many more options there are for people, and I think those are the things that we hope for at the end of our own lives and for those we love. Many people have stepped forward and made legal papers for what they want with end-of-life care. They have medical powers of attorney. It’s all of those things available in Oregon. Many states don’t have those options.
J.Z.: So with the victory in Colorado, where do we go from here?
B.C.L.: The next state will be New Jersey. A bill is working its way through the New Jersey Legislature. We expect there to be progress next year in Massachusetts, Maryland, Minnesota, New York – there will probably be bills introduced in about half the states, but we expect there to be significant progress in about seven.
You expect that a bill is not going to pass on the first time, so now we have a number of states that are lining up with a second introduction. It takes a few years for people to get comfortable and to get educated about it. It’s a complicated issue.
J.Z.: Does the grief ever get too close to you? You are around people who are grieving often – on a productive level – but some days there must be a wave of emotion that hits you.
B.R.: When I do book readings from this book (“Death Without Denial, Grief Without Apology”), and I read chapters about Frank’s moment of death, and I read about going through the hospice process, and I tell people it’s OK to weep – it’s OK to cry – I do it, and I’m the author! Yeah, it gets close; it gets very close sometimes. I get to choose what to read, and there may be a day when I’m doing a reading that night, and I think I cannot read that hospice piece tonight. And I don’t do it. It’s OK to be emotional.
Joanne Zuhl is the managing editor of Street Roots. She can be reached at joanne@streetroots.org
