Lack of safeguards worries advocates and opponents on both sides of suicide debate

Betsy Davis was too weak to kill herself.

So when it came time to end her life under a new California law for the terminally ill, her caregivers propped her up and held the cup as she drank a fatal mix of prescription drugs.

But physical assistance in taking the toxic medications is illegal, multiple experts contend.

Davis, a 41-year-old artist, suffered from Lou Gehrig’s disease, or amyotrophic lateral sclerosis (ALS). The complications she experienced in taking her life while trying to comply with California’s assisted-suicide law are far from unique, a Des Moines Register investigation of assisted suicides around the nation found.

Such complications also offer reason to reconsider or adjust “right to die” efforts in Iowa, say both proponents and opponents of such a law here.

“This story and this data should give all Iowans reason to pause and to ask ourselves: Is this really the path we want to go down,” said Jenifer Bowen, executive director of Iowa Right to Life, a group that is most commonly known for its fight against abortion but that also opposes assisted suicide.

The Register this year launched a review of national data on assisted suicide in other states, prompted by renewed political debate over efforts to make Iowa the seventh state to allow doctor-assisted suicide for terminally ill patients.

But records on hundreds of deaths in the six states that allow physician-assisted suicide are nonexistent or incomplete. That makes it impossible to decipher whether applicable state law was followed or if vulnerable patients suffered unintended consequences, the Register found.

“Assisted suicide is nearly untraceable. There is minimal reporting and tracking,” said Marilyn Golden, a senior policy analyst for the Disability Rights Education & Defense Fund in California. “It almost appears as if the practice of assisted suicide has deliberately been made secretive, all with the claim of patient confidentiality.”

Among the 1,642 documented assisted suicides in Oregon and Washington since the states began reporting statistics in 1998 and 2009, respectively, the Register found:

Golden argues for ending legalized assisted suicide based, in part, on the data. But others warn the information should instead be used to rally for better laws. That camp includes Jennifer Holm, a 46-year-old Ankeny mother with multiple terminal illnesses.

Holm has been one of Iowa’s most outspoken advocates for assisted suicide. She says the data tell her that doctors should be allowed not only to prescribe the lethal drugs but to administer them as well, to help avoid complications.

“I know there are a lot of people who say, ‘That becomes a slippery slope,’ but that’s just not true,” Holm said, pushing back against critics who contend the physical act of a doctor’s assistance would lead to unsolicited euthanasia.

Struggling to die with her failing strength

Davis’ suicide became a team effort by sheer necessity.

“I didn’t know what to do,” said Heather Okray, Davis’ caregiver for two years who helped steady Davis’ hand as she drank the fatal mixture of medication and coconut gelatin. “They give us this completely absurd time limit you have to down your liquid in. And for an ALS patient — that I know every day can’t drink that much — we were looking for a Hail Mary there.”

Her withering body and what it meant to comply with the new law were very much on Betsy’s mind in her final weeks. “I’ve been meeting with doctors, and filing paperwork, and, well, this is my window,” she wrote to friends in an email. “I have just enough strength in my arm to self-administer the drug.”

But Betsy, one of the first patients approved under California’s End of Life Option Act, ended up needing more help than expected. According to her sister, a doctor at the scene told the group it was OK, but she declined to identify the doctor.

The California Board of Medicine and other experts consider that help illegal.

“At that point, our understanding of the law was that we couldn’t assist her,” Kelly said. “But we knew that no one was going to come and arrest — no one was going to get in trouble. But it was still just this kind of concern.”

Disputed meaning of ‘self-administer’

Kelly and Okray, Betsy’s caregiver, were left with a lingering question: Is there an easier way to do this?

Suffering from ALS, Betsy typifies patients in the end stages of a particularly scary, ruthless disease that leaves them powerless. Many advocates of assisted-suicide laws would consider somebody like her in desperate need of such an option. Yet the very law intended to help such patients is written so that it might exclude her.

And the family was unable to obtain secobarbital, a drug commonly used in assisted suicides. Secobarbital sodium is the most commonly prescribed drug in assisted suicides and widely considered to be the most effective. But Betsy, faced with a local shortage of the drug, was unable to attain it in time for her own suicide.

So instead, friends and family devised a plan to make a gelatin concoction to help make the morphine, chloral hydrate and phenobarbital more palatable.

“I think out of all of this, that’s what makes me upset,” Okray said, “is watching somebody die like that and knowing there was an easier solution to it.”

Kelly said she also was troubled by the legal gray area: Had they violated the “self-administer” clause of California’s law?

The law defines “self-administer” as the “physical act of administering and ingesting the aid-in-dying drug to bring about his or her own death.”

Kelly said she was reassured to learn, after consulting with the organization Compassion & Choices, that “taking the medication needs to be a conscious, affirmative act on the part of the patient.”

“That doesn’t mean they couldn’t hold a cup that a person is drinking out of,” said Matt Whitaker, state director in California of the organization, which supports assisted-suicide laws. “That would be fine.”

A spokeswoman for the Medical Board of California referred to her organization’s analysis of the law, which, in its view, “permits a person who is present to prepare the aid-in-dying drug (but not assist in the ingesting of the drug) without civil or criminal liability.”

Groups like the Life Legal Defense Foundation, which has challenged California’s law, believe physical assistance is illegal.

Claire Marblestone, an attorney with the Foley & Lardner firm in Los Angeles, specializes in health care law and regulation. She and a colleague wrote about key requirements of the California law for the National Law Review.

The law’s requirements that patients “self-administer,” Marblestone said, is “a little bit untested.”

“It’s a very touchy subject with a lot of potential areas for gray,” she said.

What it could all mean in Iowa

California’s legal gray area now spreads to Colorado and may have consequences in Iowa as such laws reach further across the country.

Iowa Poll results in March showed 59 percent of Iowans favor allowing the terminally ill to end their own lives. That included a slim majority of Republicans (51 percent).

Iowa Republicans, including Gov. Terry Branstad, have not thus far supported physician-assisted suicide. But Sen. Joe Bolkcom, D-Iowa City, noted the effort has seen bipartisan backing in other states. He believes the lack of GOP support for the option in Iowa might change in the face of public support.

The GOP has majority control of the Iowa House and Senate, beginning in January. Without Republican support, any bill on the issue cannot advance through the legislative process.

“I’ve not abandoned hope,” said Bolkcom, who plans to reintroduce a bill for the option in next year’s Legislature.

Bowen, of Iowa Right to Life, says her group is beefing up its opposition despite Republican control. She cited GOP lawmakers around the nation who have supported assisted-suicide laws. She believes her group must maintain an aggressive, ongoing educational effort about the issue.

“There may have been a Republican surge on election night, but we saw Colorado that night approve assisted suicide,” Bowen said. “We can’t take anything for granted.”

Tamales, a Tesla and a sunset: How Betsy Davis chose to die

Forty-one-year-old Betsy Davis went through the screening steps with her primary care physician soon after California’s End of Life Option Act took effect on June 9. 

By this time, the neurodegenerative disease known as ALS had robbed her of the ability to walk, lift her arm to her face, or eat and drink without choking. Davis, the focus of a Des Moines Register investigation regarding the complications arising from physician-assisted suicides, dragged her right pinkie across the smooth surface of an iPad to control her TV with what little strength she had left.

“She was done living with ALS,” said her sister, Kelly Davis. “She wanted to put an end to her suffering.”

Betsy’s family was unable to obtain secobarbital, a drug commonly used in physician-assisted suicides but in short supply where Betsy was living. Instead, friends and family devised a plan to make a gelatin concoction to help make the morphine, chloral hydrate and phenobarbital more palatable.

On July 24, about 30 people gathered at Betsy’s rental home in Ojai, Calif., including her three caregivers and her doctor.

After a final dinner of homemade tamales, Betsy was dressed in a ceremonial kimono. (One of her unfulfilled bucket-list items had been to visit Japan.)

She was taken outside and driven in a new Tesla to a favorite spot near a grove of fruit trees and empty horse stables. She was seated on her massage table, which was sheltered by a canopy, and faced west, toward the evening sky.

That’s when one of her friends discovered the Jell-O mix wouldn’t congeal.

“It was kind of like Elmer’s glue,” said Heather Okray, Betsy’s caregiver. “It smelled like it, too. Like a really strong paint smell.”

Most of the assembled group said their final goodbyes before Betsy swallowed the medicine. The doctor stayed to watch.

The massage therapist helped Betsy sit upright and then leaned her back as she drank the glop. Okray helped Betsy with the cup. They stopped just once to wipe her chin and make sure she was taking all of the mixture.

“(Betsy) just totally focused on getting all the medication down as fast as she could,” Kelly said, noting the drink had to be completed in a window of two to eight minutes to quickly end her sister’s life.

“When it got to the point where Heather was just actually going to have to take the cup and hold it for Betsy, that’s when we turned and, like, looked at her doctor,” her sister said. ” ‘What are we supposed to do here? This is going to take too long.’ And the doctor said, ‘Go ahead and hold it for her.’

“What we thought the law said was that Betsy had to take the medication herself. So it was this effort to not — that we weren’t the ones holding the cup. That ended up just slowing down the process. And her doctor said, you know, ‘Go ahead and hold the cup for her; that’s OK.’ Because if she didn’t take all the medication — if she fell asleep before taking all the medication — she would be in a coma for a couple days and wake up. She had to take all of it.”

It took Betsy nearly nine minutes to drink the lethal dose — about a cup and a half of what her sister described as “sludge.”

“As soon she was done, she was out; we just kind of laid her down, and she was out,” Kelly said.

“This,” Kelly said of her sister, “is something that she felt strongly about — being able to have this choice.”

How California will track assisted suicides

Public records don’t yet show whether the complications Betsy Davis and her family experienced with California’s new End of Life Option act are common or a rarity.

Davis, a focus of a Des Moines Register investigation about complications with assisted suicides, was too weak to drink a deadly concoction of drugs without help.

Davis is one of the first to use the state’s assisted suicide law, which went into effect June 9.

The state’s first annual report compiling data on California’s physician-assisted suicides is due July 1. The California Department of Public Health is hiring two employees to manage data tracking for the End of Life Option Act.

That report, similar to those being kept in Oregon and Washington, will contain:

California compiles the data through forms submitted by “secure fax or mail.”

Within 30 days of writing a lethal prescription, the attending physician must submit a copy of the patient’s written request, the three-page attending physician checklist and compliance form and the one-page consulting physician compliance form.

Within 30 days of the patient’s death from the lethal drug — or any other cause — the attending physician also must submit the attending physician follow-up form.

The law requires physicians to submit the forms but does not outline penalties if they fail to comply. The Medical Board of California could issue citations and fines to physicians who don’t comply, as well as follow existing California law that would allow it to suspend or revoke licenses, among other professional penalties.