Hayward is a former nurse and firefighter who has volunteered for two years with Compassion and Choices Oregon, an advocacy group for terminally ill patients seeking to end their lives under the state’s Death With Dignity Act.
He educates terminally ill patients about the law, helps with end-of-life planning and often attends their deaths. The ideal death, he says, is planned, painless and relatively inexpensive—thanks to lethal drugs that should be readily available to anyone who needs them.
But Hayward is going public with a closely kept secret about pentobarbital, the optimal drug for his clients: It’s no longer available in Oregon. The next-best drug, secobarbital, costs $1,500 to $2,300—more than five times what pentobarbital costs. Even at that price, it’s hard to get.
Hayward says one patient was recently forced to seek funding for her secobarbital from a Washington foundation that helps cover end-of-life costs.
“It seems obvious that if there was an Oregon law, passed and supported by the majority of voters, that enabled physicians to relieve end-of-life pain and suffering, then the law should be supported regardless of a citizen’s ability to pay,” Hayward says. “When Oregon citizens are denied access to that law, then something needs to be done.”
Death-with-dignity patients are victims of a global political battle over capital punishment in the U.S., according to the federal Food and Drug Administration, which regulates pharmaceuticals, and the Oregon Health Authority, which oversees application of the state’s Death With Dignity Act.
Access to pentobarbital, also known as Nembutal, has all but ended in the United States because U.S. prison officials use it in lethal injections for executions.
“Manufacturing of the product has gone overseas, and the company [that makes Nembutal] has made a policy decision not to ship it because it can be used in death-penalty cases,” says Tom Burns, pharmacy director for the Oregon Health Authority.
In recent years, death-penalty opponents have pressured drug companies here and in Europe to restrict drugs used to execute death-row inmates.
States such as Texas and Oklahoma that regularly execute prisoners have found it increasingly difficult to obtain the drugs they require, including pentobarbital.
The shortage of drugs played a role in the botched execution of Clayton Lockett in Oklahoma last month. According to media reports, the death-row doctor used a new cocktail of drugs that left Lockett writhing in pain before he died 43 minutes later of a heart attack.
With publicity like that, it’s hardly surprising that nobody involved in the pentobarbital supply chain wants to talk about Oregon’s problem.
In 1997, Oregon became the first state in the nation to approve allowing doctors to write lethal prescriptions for terminally ill patients. In 2013, doctors wrote 122 prescriptions under the Death With Dignity Act, allowing 71 Oregonians to take their own lives. That brought the total number of death facilitated by the act to 752.
“This affects a limited number of people,” Gary Miner, compliance director for the Oregon Board of Pharmacy, says of the shortage. “But for those it does affect, it’s a significant problem.”
Representatives of Lundbeck, the Danish pharmaceutical company that manufactured pentobarbital, and McKesson, its U.S. distributor, did not return phone calls seeking comment.
On May 8, Miner says, Compassion and Choices’ former and current medical directors, Drs. Nancy Crumpacker and Peter Reagan, met with the Oregon Board of Pharmacy.
Crumpacker and Reagan proposed that a compounding pharmacy in Oregon be allowed to obtain the raw materials needed to make pentobarbital and manufacture a generic form of the drug.
“The compounding pharmacy would buy the raw material, and Compassion and Choices would just facilitate distribution,” Miner says.
Miner says he’s not aware of any legal reason Compassion and Choices’ plan would not work, although many details remain. Compassion and Choices Oregon state director Kat West declined to speak to WW, insisting written questions be sent to a Washington, D.C., spokesman for the national organization. Through the spokesman, West denied there’s a pentobarbital shortage in Oregon, but she failed to offer substantiation or explain why her group’s medical director recently sought the pharmacy board’s help in finding an alternative supply.
Hayward’s wife, state Sen. Elizabeth Steiner Hayward (D-Northwest Portland), is a family doctor who has written end-of-life prescriptions. She says there is indeed a shortage.
“Providing this service is important to Oregonians, and I’m very concerned about what appears to be a complete lack of availability of the drug we’ve historically used,” Steiner Hayward says. “What I’ve been told by the pharmacists is the drug is completely unavailable, and we should not prescribe it.”
Death with dignity is currently legal in only two other states: Washington and Vermont. Advocates would like to expand the policy across the country, and their concerns about bad publicity hampering that rollout appear to account for their reluctance to discuss Oregon’s shortage.
Hayward says he’d like to see Oregon’s congressional delegation and Gov. John Kitzhaber throw their weight behind finding a solution.
After recently assisting a 55-year-old cancer patient to end her life, Hayward wrote a letter to Kitzhaber, urging the former emergency-room doctor to use the power of his office to get the state to assist in purchasing pentobarbital.
“My client died peacefully,” Hayward wrote to Kitzhaber on May 2. “However, now other terminally ill people need your help to secure for them what the law intended.”
Kitzhaber’s spokeswoman, Rachel Wray, referred WW’s questions to the board of pharmacy and the OHA.
Hayward says it’s important that all terminally ill Oregonians, not just those with the means to pay for expensive drugs, be allowed to end their lives peacefully.
“It’s unconscionable to me that this law is now at risk of only being applied to those that can afford to use it,” he says. “A choice of living in pain because they can’t afford to die peacefully and the state that enacted the law won’t help is sadly outrageous.”