PORTLAND, Ore. – When Barbara Roberts’s husband first told her he planned to introduce a bill in the Oregon legislature for medical aid in dying, she tried to talk him out of it.
It was 1989, and Frank Roberts had endured treatment for prostate cancer that had permanently damaged his spine and left him in a wheelchair. The state senator explained the bill wasn’t for him, but for terminally ill patients who deserved the right to choose when to die.
Barbara Roberts warned her husband the bill was too controversial, but he persisted, introducing it unsuccessfully three times before his death in 1993. By then, she was governor and threw her support behind a citizens’ initiative that placed the legislation on the Oregon ballot in 1994.
“Once it passed on the ballot, I felt a huge sense of the legacy that Frank had left,” she said in a recent interview in her Portland home. “It really was a legacy — not just a legacy for Oregon but a legacy for the nation.”
With residents voting 51 per cent in favour, Oregon became the first U.S. state to legalize medical aid in dying in 1994. The bill languished amid court challenges until 1997 when legislators asked residents to vote on a measure to repeal the law. That time, 60 per cent voted to keep the act.
Now nearly 20 years later, aid in dying is an accepted, if quietly used, option in Oregon. While the number of people who use the law remains low, advocates say it enjoys wide public support, rare complications and no documented instances of abuse. A small but vocal minority continues to fight the law, arguing it’s eroded the public’s trust in doctors.
Under Oregon’s Death with Dignity Act, terminally-ill adult residents can request prescriptions for lethal doses of medication. The patient must be diagnosed by two doctors with an illness that will lead to death within six months and must be able to self-administer and ingest the pills.
The patient must make two oral requests 15 days apart and a written request. If a doctor suspects the patient’s judgment is impaired, such as by mental illness or depression, they must refer the individual for a psychiatric assessment.
Once the patient obtains the prescription, it’s illegal for anyone else to administer.
“In the United States, we feel the best way to help the most people is to push for this option,” explained Dr. Peter Reagan, a retired family doctor and spokesman for advocacy organization Compassion and Choices.
“That does not just mean that we think it’s less feasible politically to push for an active-euthanasia-type situation. That’s part of it. And the other part of it is that it’s a whole lot easier for doctors to write a prescription than it is for them to (administer) the medication.”
This requirement inevitably means some people can’t access the law — those in the late stages of ALS who cannot swallow, for example. Cancer patients outnumber ALS patients who use the law in Oregon by nearly 10 to one, but ALS patients are still the second-most common users.
Canada’s Bill C-14 would allow doctors to give lethal substances.
The push now in the United States is not to expand the kind of aid in dying offered by doctors in Oregon, but to bring access to other states. Washington and Vermont have adopted similar legislation and California’s new law is set to come into effect June 9.
Some in Canada have complained the legislation introduced by the Liberals requiring a “foreseeable” death means that people with chronic illnesses, such as multiple sclerosis, would be left out. But Oregon’s law is even more restrictive, requiring the patient to have less than six months to live.
“I really applaud the guts that your country is showing,” said Reagan. “I think this is territory that needs to be explored, but I think it needs to be explored carefully.”
Since the law was passed, 1,545 people have had prescriptions written under the Death With Dignity Act and 991 people have died. The figures are very low when considering the total number of deaths in the state — 35,598 in 2015 alone.
Much has been made of the fact that one-third of people who obtain prescriptions don’t use them. Critics point to the statistic as proof that patients are changing their minds, while supporters say that, sadly, some are dying or becoming incapacitated before they’re able to take the pills.
Another explanation is that some patients are not seeking death, but control.
“Just getting that piece of paper or the bottle of medication makes people feel more in control and it’s a relief for them,” said Dr. David Grube, a retired physician and spokesman for Compassion and Choices.
Oregon’s medical board has never disciplined a doctor for misuse and advocates often say there have been no documented cases of coercion or abuse. Opponents, however, say the process is shrouded in secrecy and there are many holes in the system that allow for misconduct.
Dr. William Toffler, national director of Physicians for Compassionate Care, a group that formed to oppose aid in dying, said doctors cannot always accurately predict how long a patient has to live.
“We have no crystal ball-reading courses in medical school,” he said.
The medication used in the state is usually Seconal or secobarbital, a barbiturate that was originally conceived as a sleeping pill. Patients who take 10 grams of Seconal — 10 times the dose for sleeping — are expected to fall asleep within minutes and die within hours.
“They came up with this Hollywood notion that if you just take a pill and slip off gently into the night, no big deal, which of course is specious,” said Toffler.
There have been six recorded instances of people regaining consciousness after taking the medication and 24 instances of vomiting, although due to a change in the reporting process in 2010 nearly half the assisted deaths in the state have not required the reporting of complications at all.
Grube said vomiting is uncommon and typically happens when the patient has a type of cancer that makes it difficult for them to absorb food. Though a doctor is not required to attend, Grube said he has witnessed some deaths under the law and all were gentle and merciful.
“The person took the medicine, fell asleep and were with their loved ones, in their bed, listening to music,” he said. “It’s a very peaceful, kind dying.”
Critics, including Toffler, argue the law has corrupted the medical profession. Patients fear “death doctors” who push assisted death, while doctors have lost touch with their roles as healers and seekers of medical advances, he said.
Former Oregon Hospice Association director Ann Jackson said the state had high-quality hospice care prior to the law and continues to rank highly among U.S. states. Ninety per cent of people who use aid in dying are enrolled in hospice and only 25 per cent report inadequate pain control.
Reagan said the law has led to tremendous advances in communication, enabling patients to talk openly with family and doctors about all end-of-life options, including hospice.
“It made people more able to talk about what they were really feeling. To say that patients who are dying aren’t thinking about (assisted death) is a misunderstanding,” he said. “Having their friends in on it, their family in on it, their providers in on it, really helps.”
— Follow @ellekane on Twitter.
Note to readers: This story was revised to make the meaning of Peter Reagan’s initial quote immediately clear.