It’s three decades since Ann Jackson voted against the first assisted-dying law in the world.
But after watching two partners succumb to cancer, and fearing the prospect of a lingering death herself as she grapples with autoimmune diseases, Jackson is now a vigorous proponent of the Oregon legislation used by thousands of people to end their own lives, and providing a blueprint for other US states and countries considering similar laws, including the UK.
“I voted twice against the law, but once it went into effect and I saw how it worked, I changed my mind,” said Jackson, the former chief executive of the Oregon Hospice Association.
“I really thought that if everyone had hospice care, they wouldn’t need this, which was very arrogant of me because hospice is something where others decide. One of the things that really bothers me is the idea that doctors should decide when to allow you to die. That is just awful. I came to realise this is about choice. Someone should be able to decide for themselves when to die.”
Oregon voters passed the state’s Death with Dignity Act in a 1994 referendum by a slim margin. Since then, more than 3,000 terminally ill people with just months to live have used the law to end their lives using a prescribed combination of lethal medications.
Along the way, the Death with Dignity Act has survived a second referendum, an attempt to kill it in the US Congress and a challenge in the US supreme court.
The number of people using the law to end their lives continues to grow each year, with 367 taking the fatal combination of drugs in 2023, less than 1% of deaths in Oregon. Support for assisted dying in the state has risen to the point where it is no longer a significant political issue.
Eight US states and Washington DC now allow what is also known as physician-assisted dying along the lines of the Oregon law, and a dozen more are debating bills to legalise it. The legislation has influenced legislation in Australia and Canada, and features strongly in ongoing debates as the UK, France and Japan contemplate their own assisted-dying laws.
But the law has not been without its challenges, including a reluctance by many doctors to sign off on requests by patients who want to end their lives.
Campaigners wrote the Death with Dignity Act to head off longstanding accusations that any such law would result in people being pressured to take their own lives against their will. Applicants must have a terminal illness with less than six months to live and be mentally competent. They are also required to self-administer the lethal medicines, which often include a mix of opioids and barbiturates.
Two doctors must agree to the prescription and tell a patient about alternatives, such as palliative care. Built-in waiting periods prevent someone acting on impulse, although these have been amended to take account of people who only have a few days to live.
The law also includes legal protections for doctors who prescribe the lethal drugs.
But those requirements did not stop the 1994 referendum evolving into an often bitter campaign. The state’s largest newspaper, the Oregonian, was strongly opposed to the Death with Dignity Act. So was the US senator for Oregon, Ron Wyden, who said he feared the law could be used to push people who could not afford medical expenses into taking their own lives.
The Roman Catholic church, alarmed at the precedent the law would set, poured millions of dollars into campaigning against it by claiming that assisted dying would encourage a rash of suicides. The archbishop of Portland, William Levada, called proponents of the law “murderers in the name of mercy”.
Other opponents claimed that the disabled and sick would take their own lives so as not to become a burden on their families. Some even claimed that Oregon’s beaches would be littered with the bodies of people who chose to die next to the sea.
Voters approved the law by a slim margin with 51% in favour. But the anti-abortion group National Right to Life almost immediately persuaded a federal judge to block its implementation for another three years. Then Oregon’s legislature decided to put the issue to voters again.
Support for the law increased to 60% on a second ballot in 1997, in part because even some Oregonians who had voted against it the first time resented outside-pressure groups failing to respect the original result.
The legislation finally took effect, but two years later Congress tried to legislate against it. By then, Wyden thought differently about the Death with Dignity Act after seeing it in action.
“Not only did I change my views, but I filibustered in the Senate to protect it. I consider it one of the most important things I’ve done in my time in public service,” he told Willamette Week.
Even as public support for the law grew among Oregonians, challenges continued. Those who wanted to make use of it often struggled to persuade their doctors to sign the necessary papers. Some physicians had moral objections, believing it breached the Hippocratic oath, or worked for medical institutions that were opposed. Others feared legal consequences after President George W Bush’s administration threatened to punish doctors who prescribed the life-ending drugs.
In response, Sue Dessayer Porter helped found End of Life Choices Oregon to guide people through the process and link them with doctors willing to help.
“When I started, in this whole Portland area, there were maybe three doctors who would sign off. For a lot of them, I think it was the legal fear. We have done so much outreach speaking to doctors, working with hospitals and hospices, to tell them that nobody has faced any legal problems. But so many are still badly informed about the law,” she said.
Jack and Marilyn Pasternack struggled to find a cooperative doctor after they were both diagnosed as terminally ill five years ago. Their son, Alan, said that when his father began to succumb to melanoma, his 89-year-old mother decided she wanted to die with him.
“She had a serious heart condition and her cardiologist told her she would die within months without surgery. He wanted her to have open-heart surgery and she didn’t want to,” he said.
Pasternack said that the cardiologist refused to sign the required papers because he opposed the law. Eventually, Pasternack was able to get his mother into hospice care, which set in motion the process that allowed the couple to obtain the medication and die together. Still, it took weeks and there was opposition from other quarters.
“My sister belongs to a congregation in New York. She spoke to the rabbi there who flat-out told her, you have to call your parents and tell them to stop doing what they’re doing,” he said.
But a sense of relief descended on the family once the couple had obtained the prescriptions. Jack and Marilyn had a last week of visiting a favourite Irish pub and a jazz club.
“We got together at their apartment. We sang songs. After a while, they drank the magic potion. They sat there holding hands. They had a beautiful day on their own terms,” said Pasternack.
Families of those who have chosen to end their lives under the law frequently say that having the lethal drugs to hand provides a sense of comfort that can transform the last days of their lives.
But Pasternack and his wife, Gail, said the process remained frustrating because his parents were constantly asked by doctors whether they still wanted to go through with taking their own lives.
“Even the moment before they give you the drink, they ask you again, because you have to be of sound mind to make this decision,” said Gail. “They kept asking. It seems like they’re trying to beat you down into changing your mind. It’s very strange.”
Mark Rarick, an oncologist who has signed off on more than 200 applications from people seeking to end their lives, said he understood the frustration but regards the system as necessary to reassure society that people are not being pressured into ending their lives against their will.
“We need the support of society to continue this. The safeguards are very important so that people know that someone with cancer cannot just say ‘I’m feeling down today and I think I want to end my life’ and do it tomorrow,” he said.
The Oregon health authority said it had not received a single report of the law being misused. But because it does not require a doctor to be present when the lethal medication is consumed, critics say the authority cannot know for certain that someone has not come under pressure to take it.
Some doctors have also expressed concern about the motivations of some patients asking to die. According to the state health authority, the three leading reasons given for using the law are “losing autonomy”, being “less able to engage in activities making life enjoyable” and “loss of dignity”.
Nearly half said being a “burden on family, friends/caregivers” was a concern alongside other reasons. More than 150 people said the cost of medical treatment fed into their decision.
Porter said she is not disturbed by these numbers because “everyone who is sick worries about being a burden on their family” and patients are not citing that as the primary reason for seeking to end their lives.
She said that almost everyone she has dealt with has made their peace with being terminally ill in part because more than 80% of those who ask to end their lives are 65 or older and most are in hospice care. But occasionally she is called on to assist someone who is young and that is a different matter.
“Most people come to terms with their death but not if they’re younger. The youngest person I dealt with was a gentleman who was about 26 years old. He was so sad because he had never been in love and he really had wanted to experience that,” she said.
In 2014, a 29-year-old woman with brain cancer, Brittany Maynard, moved from California to Oregon to take advantage of the law. Maynard went public, setting a date for her death and posting a series of videos pressing for legalisation of assisted dying in other states.
Three days after Maynard took the medication, a Vatican official condemned her for “saying no to life”. Maynard’s mother, Deborah, wrote that her dying daughter did “not deserve to be labelled as reprehensible by strangers a continent away who do not know her or the particulars of her situation”.
Maynard’s public discussion of her decision to end her life did more than any other single patient in Oregon to spread awareness and support for the law. She prompted California to adopt similar legislation.
More broadly, Oregon’s law has forced a greater focus on how people die, with doctors and medical institutions paying closer attention to palliative care and reducing suffering toward the end of life. It has also contributed to the rapid expansion of hospice care.
Still, some in the medical profession remain steadfastly opposed. Charles Bentz, one of the law’s most prominent critics in Oregon, has described it as “one of the worst things to happen to the profession of medicine since the Middle Ages”.
Jackson regards such views as marginal amid growing public support for assisted dying in Oregon and nationally.
“My Catholic cousin did it with a blessing of his family,” she said.
Jackson has personal reasons to appreciate the Death with Dignity Act. Thirty years ago, her partner, John, endured a “terrible death” from liver cancer before assisted dying was available.
In 2009, she met William Duncan – a vascular surgeon from Massachusetts “who morphed into a cowboy in Oregon” – on an internet dating site. A few years later, Duncan was diagnosed with prostate cancer and became very ill. His doctor was reluctant to sign the necessary forms but eventually agreed when Duncan declined further treatment.
The day after Thanksgiving, the family drove him through the snow to his log cabin in central Oregon. Duncan drank the medication with a bourbon cocktail as a chaser with Jackson at his side.
“Now he had that prescription, he was able to enjoy his last days,” she said.
Now Jackson, who has the autoimmune diseases multiple sclerosis and scleroderma, wonders if some day she may use the law herself.
“I get times when I’m not able to see. That’s an MS thing. I have been in a position where I wasn’t able to walk. My fingers don’t work,” she said.
“It’s comforting to know the law is there.”
