CVIndependent

Sun11182018

Last updateTue, 18 Sep 2018 1pm

During the short and unsettled lifespan of California’s End of Life Option Act—signed into law by Gov. Jerry Brown in October 2015, and taking effect on June 9, 2016—terminally ill patients diagnosed as having no more than six months left to live have become the targets of repeated legal challenges, leaving their precious final days in this world unsettled and unclear.

The fate of the law has been particularly unsettled since May 15, when Riverside County Superior Court Judge Daniel Ottolia ruled the law was invalid on the grounds that it was passed unconstitutionally during a special session of the California Legislature. During the session, Gov. Jerry Brown directed legislators to enact legislation that would improve healthcare for the state’s citizens. As result of Judge Ottolia’s ruling, participating physicians were barred from writing prescriptions for sanctioned life-ending drugs, while pharmacists were forbidden from providing those drugs to qualifying patients.

A couple of weeks later, Ottolia denied a motion filed by two terminally ill adults and one physician requesting that he vacate his earlier ruling to invalidate the law. But on June 15, the state’s 4th District Court of Appeal granted a stay of Ottolia’s ruling following emergency motions filed by the two patients, the doctor and Attorney General Xavier Becerra. As a result, the End of Life Option Act (EOLA) remains in effect until all of the legal challenges can be resolved.

Both national and California-focused surveys conducted over the last few years show that about 70 percent of citizens support a terminally ill person’s right to determine the point at which their life will end.

The law is indeed helping terminally ill Californians. The first annual report from the California Department of Public Health, as required by the law, was issued in July 2017. It showed that through Dec. 31, 2016, 191 terminally ill Californians had received prescriptions from 173 doctors for aid-in-dying medication. During those first nearly seven months of the law, 111 of those individuals (58 percent) decided to self-ingest the medication. There were no indications the law had been abused by motivations of suicide or greed—something opponents of the law said could happen. The second annual report is due this July.

Despite public support of the law, and the apparent the lack of abuse, opponents of death-with-dignity laws nationwide continue to push the courts to invalidate them.

John Kappos, a partner at O’Melveny and Myers LLP, which currently represents the national Compassion and Choices organization, said he’s dismayed that EOLA opponents keep trying to push their version of morality on others.

“If the choice (to participate as a patient or doctor in California’s ELOA) is voluntary, as described in the law, then why should a few people who do not like the option’s existence be able to decide for everyone who might want to avail themselves of the end-of-life option?” he asked.

Joan Nelson is an 82-year-old resident of Marin County who suffers from a rare and terminal form of cancer called leiomyosarcoma. She decided to enter the legal fray as one of the two patients who filed the motions that led to the stay of Judge Ottolia’s ruling, in part because of her family history.

“When I was a little girl, my grandmother came into the house, and she died there,” Nelson said. “I was maybe 4 ½ to 5 years old, and I was really proud, because I had learned how to skip. I wanted to skip for her, and they kept telling me I couldn’t. But finally, they let me into the room. They told me not to look at her. … The shades were drawn, but I skipped a few steps, and then I left the room. … I was supposed to be content, but I remained frustrated all my life. As a result, I became an amateur thanatologist, and I’ve been fascinated by the phenomenon of death all my life.

“I’ve been on a mission to normalize death for a long time. My parents did not handle their deaths well with me. They did not allow me to see their dead bodies or their ashes. They were trying to protect me, but instead, they left me with a whole lot of incompletes.”

Nelson said she believes the court decisions won’t affect her either way.

“I think I’m free,” she said, happily. “I’ve got my meds, so I’m free to do what I want. I am blessed, and having these medications is enabling me to avoid what I call those dreaded “D’s”: decline, diminishment and all of that. I may never take the medication, but I no longer have fear of watching myself go into a horrible downhill spin. I’m no longer afraid of that.”

Just before the California 4th District Court of Appeal issued the stay, Kat West, the national director of policy and programs with Compassion and Choices, described the chaos terminally ill patients were facing as a result of the court battles.

“There are a lot of patients and their family members who have been left in limbo,” West said. “That’s the worst result. Also, we’re hearing from a lot of hospice staff people who are really upset and asking us what to do and how to help their patients. We’re getting calls from doctors whose patients are in the midst of this process, and they’re very upset, because they feel that they’ve been forced to abandon their patients at their greatest time of need. It’s been a horrible, tragic situation.”

The issue probably won’t be settled any time soon; the case will likely need to be decided by the California Supreme Court.

“The appeals court made the legally correct decision by reinstating the status quo of the law being in effect,” Kappos said it a press release. “… Ultimately, we are confident the courts will rule the law is constitutional and valid.”

Published in Local Issues

On June 27, the California Department of Public Health issued its first data report on residents’ participation in the new End of Life Option Act.

The law was signed by the governor in 2015 and took effect on June 9, 2016. The report reveals that 258 terminally ill California patients—diagnosed as having less than 6 months to live—started the process as called for under the law, as of Dec. 31, 2016.

Of those 258 patients, 191 were prescribed the life-ending medications, by 173 unique physicians. The report states: “111 patients, or 58.1 percent, were reported by their physician to have died following ingestion of aid-in-dying drugs prescribed under EOLA, while 21 individuals, or 11 percent, died without ingestion of the prescribed aid-in-dying drug(s). The outcome of the remaining 59 individuals, or 30.9 percent, who have been prescribed aid-in-dying drugs, is currently undetermined, as there has been no outcome reported for these individuals within the time period covered by this report.” (Full disclosure: One of the 111 patients who passed away using the new law was my mother-in-law; see “Annette’s Story,” posted at CVIndependent.com on Dec. 20, 2016.)

Kat West is the national director of policy and programs at Compassion and Choices, a national support organization for medical aid-in-dying patients and their cause. The organization just released its own, independent report on the law, covering activity through May 31 of this year.

“We were actually very encouraged by the data that came out of the state, because it showed that (the participation rate) was in keeping with our previous experience in the other authorized states,” West said. “The one piece of data we were very happy to see was the ratio of the number of different doctors prescribing the drugs compared to the group of patients requesting. That was a really good indicator that medical aid-in-dying is being what we call “normalized” and basically mainstreamed into end-of-life care.”

According to the Compassion and Choices report, the organization knows of 313 prescriptions that were written for medical aid in dying in the first five months of 2017. Meanwhile, 498 health-care facilities and 104 hospice locations have adopted policies supportive of patient choice, while about 80 percent of private insurance companies have covered the cost of the medications, including Blue Cross Blue Shield, Kaiser Permanente, Sutter and all Medi-Cal plans.

“The additional 313 prescriptions issued (thus far in 2017) were only the ones that we know about,” West said. “There are plenty of doctors who did not reach out to our organization, and there are plenty of terminally ill people who did not reach out to us. As a result, we don’t know of all of the prescriptions that may have been written in the state of California.”

Not all of the news is good for proponents of medical aid-in-dying protocols. The federal House Appropriations Committee recently voted to block funding to implement a new medical aid-in-dying law in Washington, D.C.

In California, a Riverside County Superior Court judge allowed the Ahn vs. Hestrin lawsuit, which challenges the End of Life Option Act, to move ahead into the courts, although an injunction request to put the law on hold was rejected by the judge.

John Kappos, a partner at the O’Melveny and Myers law firm, is representing proponents of the law. He said he is not too concerned about the lawsuit.

“What I find most concerning is the fact that a purely voluntary procedure like medical aid in dying causes some people to try to impose their will on others,” he said. “People can decide that they want to do it, or they can decide that they’d prefer not to do it and just die of natural causes. There’s no one here who is telling the people who do not want to participate in medical aid in dying that they need to, or have any obligation to do so. It’s very concerning to me that there are people in California who feel that they need to tell others … they have to suffer at the end of life, and potentially die an excruciating death.”

Kappos said it could take a year or longer for the case to be resolved. “It’s hard to guess at these kinds of things, but in my view, these are purely legal issues, and eventually, that will come to light, and the case should be resolved on a motion (in the defendant’s favor).”

Here in the Coachella Valley, Eisenhower Medical Center continues to deny its staff and doctors permission to write medical-aid-in-dying prescriptions for its terminally ill patients.

“I try to take the long view, and that is that change is hard,” said West, of Compassion and Choices. “But look back 20 years as an example. If you were to bring up the subject of hospice care with a group of medical professionals, it would clear the room. That’s how taboo the topic of death and end-of-life care was then. Now, of course, hospice is completely mainstream, and everyone thinks it’s great. So it’ll be the same trajectory for medical aid in dying, especially now that California has authorized it.

“Eisenhower is just going to find itself out of step with the community’s needs and desires. It’s going to find itself out of step with its own doctors’ feelings about the issue, and eventually, it will change its policy. The community clearly wants it, so it’s just the administrators. The community is already stepping up their demands, and internal champions within Eisenhower are also calling us and letting us know what they think.”

West predicted change will come to Eisenhower sooner rather than later.

“I’d say they will change their policy within a year. I do believe that,” West said. “The administrators have to pay attention to what their community is asking for.”

West suggested that everyone engage in an end-of-life-treatment discussion with their own health-care professionals.

“Our big ask of everyone is to ask your own doctor now if they would provide the protocol legalized in the End of Life Option Act—whether she or he will support you if and when the time comes,” West said.

Published in Local Issues