Oregon aid-in-dying law turns 20: Patients face hurdles
PORTLAND, Ore. (AP) — Pam Wald will never forget the night her husband of 43 years said he wanted to die.
He’d managed for months with late stage colon cancer that had spread to his lungs, bones and esophagus. But in recent weeks, he’d stopped eating and lost his energy.
Wald hoped he would change his mind.
The next night he again asked for help using Oregon’s Death with Dignity Act.
“I don’t want to continue living like this,” he said.
Twenty years old on Friday, Oregon’s first-in-the-nation assisted death law has offered an option that Ben Wald and more than 1,000 other people have taken.
It’s become an acknowledged part of the state’s medical landscape, though it continues to face steep hurdles, as the Walds found out.
Patients have difficulty finding doctors to prescribe the dose of drugs that will put them in a coma and stop their hearts. Willing physicians are few, and they’re especially scarce in rural areas.
Even when people find a doctor, the cost of the preferred prescription has increased more than tenfold in recent years, putting the avenue out of reach for people without the means or connections to carry out their wishes.
The law, approved by voters in 1994 and again in 1997, allows a physician to write a lethal prescription for mentally competent adults with six months to live.
Similar statutes are now on the books in Washington state, California, Colorado, Vermont and the District of Columbia. A Montana Supreme Court decision also legalized physician-assisted death there. Thirty other states considered legalization this year, according to the Death with Dignity National Center.
In Oregon, use of the law has steadily grown. Last year, it happened 133 times. Nearly 1,200 people have died using the law in the last two decades. A vast majority cited loss of autonomy as their main reason.
About 40 percent of people who get a prescription don’t take the drugs. Some die anyway, some continue to live and some become unable to take the drugs.
Most of the people who chose to use the law had cancer. Their median age was 72. Half of them were in the Portland metro area.
State reports indicate few complications.
“No physician or pharmacy has ever been sanctioned or reprimanded in 20 years,” said George Eighmey, president of the board of directors for the Portland-based Death with Dignity National Center, which promotes the law in other states.
The Catholic Church and some conservative groups oppose the law. But they’re no longer actively fighting it.
“The law is pretty much here to stay,” said Gayle Atteberry, spokeswoman for the nonprofit Oregon Right to Life. “What we are fighting is the extension of this law.”
The group doesn’t want the law widened in Oregon or adopted by any other states.
Though the law is two decades old, many patients still don’t know how it works.
“The perception seems to be that all you have to do is ask a doctor and you’ll get the medication,” said Mary Burgess, who oversees volunteers in southern Oregon who help patients navigate the process for the nonprofit End of Life Choices Oregon. “That’s not the way it works. Not all doctors want to participate.”
Pam Wald discovered that first hand.
“I had no idea I would deal with so many barriers,” she said.
‘WE BECAME A TEAM’
Ben Wald was diagnosed with colon cancer in 2005. Surgeons cut it out. They thought they got it all, Pam Wald said.
A retired therapist, Ben Wald loved gardening, politics and food. He had empathy for people and was a natural comedian, Pam Wald said.
She figured they’d live into their 90s.
But in early 2011 a tumor turned up in his lungs. Ben Wald was 74. He ruled out chemotherapy. Too many side effects for too little benefit.
He eliminated sugar from his diet and tried massage and acupuncture. A naturopath prescribed Chinese herbs that gave him some relief.
But over time his 5-foot-9 frame shrunk from 175 pounds to 118. He lost his voice, he couldn’t meander around the garden and had no passion for politics. A Massachusetts native, he couldn’t even watch a Boston Red Sox game.
“When you’re in pain all the time, you can’t focus on anything,” Pam Wald said. “It was terrible.”
One quarter of patients cite pain as a reason for seeking Death with Dignity.
Pam Wald knew she had to help.
She put her feelings aside and focused on her mission.
“We became a team,” she said.
‘IT WAS A VERY CONTENTIOUS TIME’
Oregon’s law was carved out of the ashes of two failed attempts to legalize aid in dying, a 1991 initiative in Washington state and a California proposition in 1992.
“It was a very contentious time,” said Eli Stutsman, a Portland lawyer who drafted Oregon’s Death with Dignity Act. “It was a social issue that can hit a nerve, at the intersection of law, medicine and religion.”
In 1990, a Portland woman, Janet Adkins, traveled to Michigan where Dr. Jack Kevorkian helped her use his lethal injection device in his Volkswagen van. Her death inflamed a national debate.
The California and Washington proposals would have allowed euthanasia. That helped defeat them, Stutsman said.
The Oregon law puts the onus on patients. They must take the medication themselves and find their own physicians.
Most medical groups affiliated with religious denominations bar their physicians from participating in the law. And even if a medical group allows participation, doctors decide on their own whether to prescribe Death with Dignity drugs. Many won’t.
Wald’s oncologist at Corvallis Clinic was new to the area and knew nothing about the law or how to help.
Wald called Compassion & Choices, an advocacy group that helped patients use the Death with Dignity Act. Two volunteers from Eugene, a retired kindergarten teacher and retired ICU nurse, came to their country home near Philomath and explained everything.
Finding a doctor was arduous.
Wald spent days on the phone with Corvallis Clinic, refusing to take no for an answer. The risk manager tried but couldn’t help. She called Compassion & Choices, too. There didn’t seem be any willing doctors in the area.
“This is what happens to a lot of people,” Wald said. “They hit a roadblock and then their loved one dies a horrible death.”
She was determined that wouldn’t happen to her husband.
PARTICIPATION BUILDS SLOWLY
A total of 374 physicians have written a lethal prescription in Oregon since 2000 among some 14,000 physicians licensed by the Oregon Medical Board.
About 60 percent have written only one prescription. A few have written dozens.
Dr. Charles Blanke, an oncologist at Oregon Health & Science University who believes in patient choice, has written dozens of the prescriptions.
“There is no doubt that there is very slow momentum in terms of greater acceptability,” Blanke said.
He said he’s often contacted by patients who tell him it took months to find him.
“That happens almost every single week,” Blanke said. “They live everywhere in the state.”
An analysis two years ago by the Oregon Health Authority, which collects Death with Dignity data, showed that half of the prescribing doctors are in the Portland metro area, with about one third in other counties west of the Cascades. About 10 percent lived east of the Cascades, with nearly 6 percent on the coast.
Though more prescribing physicians are in the metro area than anywhere else, Blanke said that even patients in Portland can have problems finding a doctor.
“I’m still personally bothered by the fact that there are physicians out there who say, ‘I don’t do it. I don’t know anybody who does. Good luck,’” Blanke said.
There also aren’t many advocates to help people use the law.
Compassion & Choices, which is focused on education and advocacy, doesn’t refer patients to physicians. End of Life Choices Oregon, a spinoff organization, educates and comforts patients but isn’t a referral service either.
The law protects the privacy of participating physicians. That means patients must ask around, which can be difficult in areas with few physicians to begin with.
Blanke said he’s driven three hours to make a house call on a Death with Dignity patient. Another oncologist, Dr. John Strother, who estimates he’s written about 100 prescriptions, serves patients in Salem.
Among six oncologists at Salem Hospital, he’s the only one who will write a lethal prescription.
“This is something patients legally have a right to in Oregon,” Strother said. “It provides significant comfort for people.”
‘THE ENEMY IS SUFFERING’
Pam Wald said it took about a month and 80 calls to line everything up.
In the end, the risk manager at the Corvallis Clinic found a family physician nearby, Dr. David Grube in Philomath, who was willing to help.
Now medical director for Compassion & Choices, Grube said personal experience led him to support the law.
As a young physician, he had a neighbor, a cancer patient in pain, who was on hospice. One day Grube found the man dead in his bedroom. He had killed himself with a shotgun. It devastated Grube and the family.
“I came to the realization that the enemy is not death,” Grube said. “The enemy is suffering.”
To obtain a prescription, the patient has to make two verbal requests, plus a written one. The verbal requests have to be 15 days apart.
In Ben Wald’s case, he made it to his oncologist at the Corvallis Clinic. Grube persuaded her to write his request in her chart notes so Wald wouldn’t have to make a new first request and could take the medication sooner.
Patients also are required to have two physicians: one who writes the prescription and a consulting doctor. Pam Wald pressed the medical director of Compassion & Choices to find a consulting physician. The director found a willing oncologist but that physician’s business manager balked.
In the end, the oncologist visited Ben Wald on his own, and Grube wrote the prescription.
And then there was this: No nearby pharmacy would fill it.
The closest one they could find was in Gresham and Wald couldn’t leave her husband.
Two friends agreed to drive there to pick it up.
PRICE JACKED UP
Grube prescribed 100 capsules of Seconal, the trade name for secobarbital sodium. The sedative, more than 80 years old, is primarily used for aid in dying.
The Walds paid $320 for the prescription in May 2012.
The price has skyrocketed since then, reaching $1,500 in 2015, the year Valeant Pharmaceuticals International acquired the rights. The Canadian company promptly doubled the price in the United States, and it’s gone up even more since. A prescription can now cost as much as $3,800.
“It’s very problematic,” said Sue Porter, the founding executive director of End of Life Choices Oregon. “We get people who don’t have the money.”
There are no generics and the cost isn’t usually paid by insurance. It’s not covered by Medicare. The Oregon Health Plan, the state’s Medicaid program, will pay, but Medicaid in Washington state won’t.
That prompted advocates there to come up with a cheaper alternative.
“What you’re looking for is a medication that will put people to sleep rapidly and then will result in rapid death with no side effects,” said Sally McLaughlin, executive director of End of Life Washington, a nonprofit that works with patients.
The group convened a panel of experts who released a formula in May 2016. It combined a heart drug with an anti-anxiety medication and morphine. Made by a compounding pharmacy, the prescription cost about $700.
The group added another heart drug two months later and then altered the amounts of each drug this past February to make it more efficient.
McLaughlin said it’s been taken by 132 people in Washington state, with more in Oregon and California.
“We’ve never had anyone wake up and we’ve never had anyone not die from ingesting the medication,” she said.
Often it’s not as quick as Seconal, which typically puts the patient in a coma in five minutes and kills them within 25 minutes.
With the Washington formula, patients can remain in a coma for hours, Blanke said. That can happen with Seconal but it’s more unusual, he said.
When that happens, patients are at ease but their families aren’t, he said.
“I can personally tell you from going to patients’ houses all the time that if they are in a coma for more than an hour it is extraordinarily unpleasant for the family, no matter how comfortable the patient is,” Blanke said.
HE WANTED A SMALL GATHERING
When the medication arrived, Ben Wald relaxed.
“You could see this lightness in his face,” Pam Wald said.
He wanted to die in two days.
Ben Wald wanted a small gathering with friends and his wife but not their adult daughter. She has a mental disability and lives in a group home. He had seen her a week before.
Pam Wald organized his death on Friday, May 4, 2012. Friends brought food, including his favorite meatloaf with apricot sauce. He couldn’t eat but loved looking at it.
Pam Wald read to her husband from a book by basketball coach John Wooden that was laden with statistics. She became an announcer, like those he had listened to as a child on the radio.
“I could barely pronounce all of the numbers,” Pam Wald said. “But I looked at Ben and he had the biggest smile on his face.”
Sitting on the edge of the bed, he swallowed the sloshy mixture.
He lay down and folded his hands on his chest. He looked at his wife and the others in the room.
“Thank you,” he said.
He quickly slipped into a coma. Within about 45 minutes, he was dead at age 75.
“That was the first time I’d seen my husband without pain in 11 months,” Wald said. “He was in total peace.”
HIS ASHES BURIED IN FRONT
In grieving, Wald remembered what her therapist husband had always said.
“Feelings won’t kill you if you stay with them.”
She just had to nurse herself through it.
She went through counseling for a year and created rituals for herself. She churned out colorful, childlike drawings to chart her progress. In the pictures, she gave her bike training wheels and drew herself as a little girl on a path with friends.
When she was ready, she buried her husband’s ashes in front of their home. The grave is decorated with a lavender plant and lemon balm and a metal blue heron stands guard overlooking an open field with no structures in sight.
Wald held a celebration of life in the garden 15 months after her husband died. Two volunteers from Compassion & Choices who had helped her were there.
Wald couldn’t have navigated the act without them.
She’s since joined their ranks.
“I heard about other cases where people never got permission,” Wald said.
She formed a team with Grube that included other doctors, nurses and volunteers. They have 20 doctors in the area who will participate. They go to patients’ homes, explain the law and help people use it.
“It’s such an important right for anybody who wants it even if they choose not to take it,” Wald said. “It’s hard as hell. But it’s the most important gift you can give your loved one.”
Information from: The Oregonian/OregonLive, http://www.oregonlive.com