CVIndependent

Tue08212018

Last updateWed, 27 Sep 2017 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

The quiet bustle outside of Eisenhower Medical Center’s medical campus in Rancho Mirage was disturbed by the old-school call and response of an organizer’s bullhorn and a crowd of protesters on the morning of Thursday, March 2.

“What do we want?” shouted Joe Barnes, the California outreach manager for Compassion and Choices, a national advocacy group for terminally ill patients.

The crowd of 100 or so enthusiastic supporters of the California End of Life Option Act responded: “Access!”

Barnes continued: “When do we want it?”

“Now!” hollered the crowd.

The protest on the sidewalks alongside the Bob Hope Drive entrance to EMC was organized by, and for, Coachella Valley residents frustrated by the refusal of EMC administrators to allow any of their doctors, other professional staff members and facilities to participate in the new state law, which lays out the strict guidelines under which patients can obtain life-ending prescriptions, should they so choose. (Full disclosure: My mother-in-law utilized the law last year.)

Signs were waved; short and impassioned speeches were given; chants were raised; and then the group headed into the hospital building to meet with an EMC representative.

“We encourage members of our communities to speak with their doctors about what their priorities are at the end of their life, and really become a team with their doctors rather than accepting everything that the medical community just pushes out to them,” said Joan Stucker, the chairperson of the Coachella Valley Access Team for Compassion and Choices, to the Independent during the rally. “We have a hold-up (in patient access to End of Life Option services) with Eisenhower Hospital, because their doctors are employed by the hospital, and even though some of their physicians want to give their patients access, they (EMC leaders) refuse to let them do that. We want them to change that position.”

The other major-health care provider in our valley, Tenet Healthcare, operates the Desert Regional Medical Center in Palm Springs, the JFK Memorial Hospital in Indio, and the Hi-Desert Medical Center in Joshua Tree. These facilities will not be a target of pro-End of Life Option demonstrations, because Tenet administrators recently clarified publicly that they will allow their personnel, including doctors in their networks, to support a patient’s End of Life Act rights.

The newly released official policy statement stipulates that any Tenet personnel who choose to engage in the End of Life Option procedures must record patient interactions in the Tenet health records systems. While Tenet physicians may write prescriptions for the life-ending drugs described in the California law, patients may not fill those prescriptions in Tenet pharmacies, or take those drugs in any of Tenet facilities.

Tenet is clearly doing more to address the needs of the terminally ill patients than EMC, which refuses to cooperate with the California law on any level.

“It just doesn’t seem that they (EMC) are providing the good care that they claim to give,” Stucker said. “They’re supposed to give incredible care to their patients, and yet they’re refusing to let them have this option.”

Idyllwild resident and EMC patient Francoise Frigola turned out for the rally.

“I asked my doctor what her position was (regarding the End of Life Option Act), and she was furious,” Frigola explained while leaning forward in her wheelchair. “She was part of writing the law, and because she’s affiliated with Eisenhower down here, she cannot do anything.”

Barnes told the Independent that he spoke with an EMC representative before the rally and told her: “‘You know, if you did what you said you were going to do, then we wouldn’t have this rally here today.’ Last fall, Compassion and Choices spoke to EMC representatives, who told us that they would make public outreach efforts and hold a town hall-style meeting where patients could state their concerns. But they never did anything.”

We asked Stucker what steps would next be taken regarding the lack of End of Life Option access at EMC.

“We know that getting access to medical aid in dying takes time. We know there’s a certain amount of resistance,” Stucker said. “It’s very difficult, because physicians and hospitals have not really been trained in end-of-life care. They’re very uncomfortable doing something that they’ve actually been trained not to do. But Eisenhower Medical Center is such a major player in local health care, serving a lot of patients all over the valley. We think it’s only right that their patients have a chance to get access (to medical aid in dying assistance) with the physicians that they are seeing.”

Published in Local Issues

Gov. Jerry Brown signed the End of Life Option Act in October 2015, and the law went into effect on June 9, 2016.

But for many Coachella Valley residents who have been diagnosed with a terminal illness and given a prognosis of less than six months to live, the end-of-life option remains out of grasp—that is, unless they switch health providers.

Trust me, I know: I helped my mother-in-law through the end-of-life process last year.

No statistics are available yet regarding the number of Coachella Valley patients who have obtained prescriptions for life-ending medications since the law took effect; the initial annual report required by the law will not be issued until later this year. But according to patient, doctor and advocate feedback, the refusal of some major health-care providers in our valley to support the new law has been keeping those numbers down. Eisenhower Medical Center (EMC), with facilities located across the valley, and both Desert Regional Medical Center in Palm Springs and JFK Memorial Hospital in Indio (the latter two owned by Tenet Health, a company based in Dallas) have been refusing assistance to terminally ill patients.

However, this picture improved in mid-February, when Tenet Health informed Compassion and Choices—a national nonprofit “medical aid in dying” advocacy organization—that the company had established a “regulatory compliance policy to define the scope of permitted participation, documentation and notification requirements for Tenet entities” in California.

Compassion and Choices California director Matt Whitaker welcomed the news.

“Tenet confirmed that their physicians are indeed allowed to participate in the (End of Life Option) act,” Whitaker wrote the Independent in an email.

Curiously, the written policy just delivered by Tenet was dated June 7, 2016. What could have caused the eight-month communication delay?

“The good news is that they (Tenet) are going to allow individuals to have access to medical aid in dying,” said Joe Barnes, the Compassion and Choices California outreach manager, during a recent phone interview. “It sounds like they are probably still having challenges about whether or not to allow people who are being treated in their hospitals to be able to be in a private hospital room surrounded by loved ones and ingest the medication to end their pain and suffering.”

Barnes said many health-care organizations are still figuring out the logistics of dealing with the new law.

“It seems some health-care systems are still working out the internal mechanics of how they are addressing the needs of their patients,” he said. “Sometimes, one side of the hospital is not communicating with the other side, and then the patient doesn’t receive the correct information. But we try to follow up with health-care systems to see what their questions might be if they have any, and also to find out what their official policy is. If a health-care system doesn’t have a written policy, then they are automatically considered a supportive health-care system.”

While Tenet is taking steps toward assisting patients with the law, EMC is apparently not. I contacted Lee Rice, the media coordinator and public relations specialist at EMC, to talk with an appropriate representative regarding the End of Life Option Act. After several days, Rice replied that no interview could be arranged. He did, however, forward to me an official statement, which read, in part: “Eisenhower Medical Center carefully reviewed and discussed the requirements of the End of Life Option Act and elected the option under the act not to participate in the process. … Eisenhower will provide information about the End of Life Option Act upon request and supports each patient’s right to make decisions about care, including the choice to accept or reject treatments that might be available.”

Compassion and Choices’ Whitaker expressed disappointment with EMC’s stance.

“We would characterize Tenet’s policy as supportive, but not Eisenhower’s,” Whitaker said. “The line that (Eisenhower representatives) keep using is that their physicians are free to do this on their own time. That’s the framing they use to say that they’re not limiting access for patients in the area: ‘We (EMC) are only limiting it during the time that they’re employed by us.’ But the way that health care has consolidated, EMC has 40-something clinics that have affiliated with them in the area, so there are not a lot of sole practitioners out there—and for folks who work in a hospital or an outpatient clinic, they don’t really have the ability to do things on their own time. They don’t have their own medical-records system. Oftentimes, their malpractice insurance is through their employer. They don’t have the physical facilities available to care for these patients. So (EMC) is kind of a broken record when they just keep pushing back, saying, ‘Well, the doctors can do it on their own time.’ That’s not what’s needed. Patients who are being seen by doctors at these clinics need to be able to receive this treatment during the course of their care.”

In an effort to influence EMC’s stance, Compassion and Choices supporters and other valley residents are planning a rally at 11 a.m., Thursday, March 2, in front of the main Eisenhower Medical Center campus in Rancho Mirage.

“Ever since Eisenhower Medical Center announced that it wasn’t going to allow people to have access to medical aid in dying, there’s been an increase in the requests for presentations to community groups and organizations across the area,” Barnes said. “The question always comes up as to what the community can do, because that’s (one of the) the flagship hospitals in the area.

“We have thousands of people who are supportive of medical aid in dying in that area. They helped us pass the law in the first place by reaching out to their local legislators and holding events to educate fellow community members to the importance of medical aid in dying. So, the natural next step is that the folks want to have a rally in front of the hospital. Many of the people who will be at the rally are also donors to the Eisenhower (Medical Center) Foundation. They’re kind of scratching their heads, because they live in the community and donate to the hospital but can’t get access to medical aid in dying, and they really don’t understand it.”

Published in Features

Linda is my wife, my best friend. She’s the daughter of Annette, who had been battling cancer for years.

Fifteen months prior to this August 2016 morning, Annette, then 93, had come to live out her last days with us in our Palm Desert home. Now, Linda stood at the foot of her mother’s bed and spoke softly to our cat, who had stretched herself out across Annette’s lower legs.

“Lola, honey, come on now,” Linda cajoled. “You have to get up, sweetie. Mom-mom’s no longer here. She’s gone now.”

Lola stayed put with her chin on her crossed front paws. It seemed that nothing or no one could disturb this quiet, calm and peaceful scene.

Thanks to California’s End of Life Option Act, Annette had just left behind the painful captivity of the cancer that had progressively destroyed her quality of life.


This peaceful day came after one of the most trying 15 months of our lives.

“Mom was diagnosed as having six months or less to live, and was in hospice care when she came to stay with us,” Linda recalled. “At this point, she never had a day when she felt well. So, when the End of Life Option became legal in California,” on June 9, 2016, after being signed into law by Gov. Jerry Brown in October 2015, “she decided that she wanted to participate in it. I went online and did a lot of research.”

Linda quickly learned the process was not going to be easy.

“What I found was that none of the hospitals out here (in the Coachella Valley) were participating in providing their patients with the support to obtain the life-ending prescriptions,” Linda said. “And that meant that none of the doctors out here, as far as I knew, were participating.”

Linda has directed information-research departments for major media and advertising companies—so her online search skills are well-honed, to say the least. However, she could find no local leads for resources to contact on her mom’s behalf.

“Actually, that isn’t uncommon, because doctors don’t want to advertise that they participate in this program,” Linda said. “I had been in contact with people in Oregon and other states where (medical aid in dying) had been legal for a while. That’s where I started to see what had come before: Doctors don’t want to be seen as ‘Dr. Kevorkians’ or doctors of death, so there are no lists. Even in places where it has been legal for 18 years, there’s no list for doctors who are participating. You have to talk to your own doctor.

“During my research, though, I came upon the organization Compassion and Choices, and I contacted them,” Linda said. “I asked if they had any contacts in California who could help us access this option, and they said that the only thing they knew was that Kaiser Permanente was participating—which meant, to me, our only recourse was Kaiser.”


Amy Thoma, the director of public affairs for Kaiser Permanente, recently talked to me about Kaiser’s participation.

“We allow our physicians to participate in California’s End of Life Option Act,” Thoma said. “Physician participation is not mandatory. Also, we allow it in other regions such as Washington and Oregon, where it’s been an option for a while now. We encourage our patients to have thoughtful discussions with their loved ones, family and friends, as well as their health-care providers, about their end-of-life wishes so that they can have whatever dignified ending they choose.”

I asked what Kaiser does to “market” the fact that it allows patients and their doctors to participate in the End of Life Option Act.

“Health plans in general are not allowed to market the End of Life Option Act in California,” Thoma said. “It’s prohibited by (the End of Life Option) law, so we do not market it to our patients at all.”

Thoma referred me to Compassion and Choices for a broader discussion about medical-provider systems in California and their participation in the End of Life Option Act. Therefore, I reached out to Matt Whitaker, the newly appointed California state director for Compassion and Choices. We asked him whether the lack of support by the medical industry in our area was atypical.

“I would say that the Coachella Valley is pretty unique in the way that there is really no access to medical providers supporting the End of Life Option Act program,” Whitaker said. “In most of the population centers across California, you have the few religiously affiliated hospitals and organizations that made the decision not to participate, but you don’t see the majority of health systems choosing not to participate.”

In particular, he focused on the fact that Eisenhower Medical Center, one of the major health-care providers in our valley, has chosen not to offer End of Life Option services—nor is Eisenhower permitting any associated doctors to participate.

“They are not religiously affiliated,” Whitaker said. “We know from our work in the community that they have a large number of doctors who want to participate and who were super-upset when the decision not to do so came down, because there wasn’t much stakeholder engagement at all prior to making that decision.”


Last summer, Linda began taking steps for Annette to move from her existing insurance plan and health-care network to the Kaiser Permanente universe.

“Mom had Medicare insurance, so what we needed to do was change her supplemental insurance to Kaiser,” Linda said. “Fortunately, if you are on Medicare, Kaiser offers open enrollment at any time, all year. … But before we joined Kaiser, I called them, and we went over everything. They told me that (providing End of Life services in California) was new to them, and that they were hiring an end-of-life coordinator for Riverside County who would take us through the entire process. So we cancelled Mom’s supplemental policy in the middle of the month, and by the first of the next month, she was on Kaiser. She got a senior (citizen) insurance plan that had no monthly fee to be paid.”

It became very obvious, very quickly, that the Riverside County end-of-life coordinator’s support was an invaluable resource provided by Kaiser. The two of them worked as a team on Annette’s behalf in the weeks ahead.

“Once I got in contact with the new and extremely helpful coordinator, she reviewed for me the criteria necessary for a terminally ill patient to qualify for the End of Life Option in California,” Linda said. “You have to prove that you are a resident of California; you need to have a diagnosis of six months or less to live; you have to demonstrate that you are in your right mind and not suffering from depression; and you must be able to self-administer the prescribed medications. Also, you must be able to confirm, both in writing and orally, that you are personally in agreement with the decision to follow this end-of-life course of action.”

The California law also stipulates that two doctors must be involved in the process of granting permission to obtain the life-ending medications.

“The coordinator told me that there would be a first-opinion doctor who Mom would see initially, and who would then evaluate her again at least 15 days following that initial in-person appointment,” Linda said. “During that interim period, she would have to visit another doctor in person for a second opinion.”

Because Kaiser’s operations in support of the End of Life Option Act in California were just beginning, there were no existing relationships with doctors in their network who had elected to participate in the program. Originally, the coordinator was able to find doctors—but they were hours away from Palm Desert. “I told her that Mom was in no shape to make those trips,” Linda said. “I explained to her that we weren’t in a rush, but that we needed to find doctors close to our home in Palm Desert.

“She found us the first-opinion doctor at the Kaiser Indio facility, and the second doctor was in Palm Springs.”

At this point, Annette was given a form that she had to complete in preparation for her initial doctor visit, and appointments were made for the first two doctor visits.

“When we saw the first doctor, it was not a long trip to Indio, and the visit was rather short,” Linda said. “(My mom) gave him the completed form, and he reviewed her medical history. Then he interviewed Mom to make sure that this was her choice, and that it wasn’t a case of anyone trying to talk her into it. He asked why she wanted to pursue this end-of-life option. She told him that she suffered from two types of cancer and never had a day when she felt well.

“Less than a week later, we had an appointment to see the second-opinion doctor in the Palm Springs Kaiser office. He asked her another bunch of questions: When was she diagnosed? What illness did she have? Was she in pain? He talked to her about other things to confirm that she was coherent and in her right mind, and that it was her choice to do this. Also, he asked if she was capable of self-administering the drugs.

“Finally, Annette had her return consultation with the first-opinion doctor. Shortly thereafter, he was able to prescribe the necessary medications.”

The cost of these medications to the patient can vary, depending on the type of insurance; in fact, the drugs can be quite expensive. However, Kaiser may be able to help a patient find financial aid if he or she can prove financial hardship.

At this stage, the coordinator made an appointment for Linda to meet with a Kaiser pharmacist manager for the drugs to be delivered into the possession of either the patient or his/her representative, and to review—in detail—the procedure for administering the drugs.

“In our case, I met him at the Moreno Valley Kaiser facility,” Linda said. “He explained that there would be three separate drugs to be ingested to complete the end-of-life protocol, and he described in great detail the procedure for taking them to ensure the intended result.”

Everything was ready for Annette to make a final decision. The process—from the time she joined Kaiser to the time when we received the life-ending drugs—took no longer than 60 days.

“It’s important to note that the patient can change his or her mind at any time during this process,” Linda said. “Even if they have obtained the prescribed medications, they can change their mind. It seems that only approximately 30 percent of the people who receive the medications actually follow through and take them. … A lot of people change their mind.

“It gives you the option to control your own passing, and that is a wonderful thing.”


Dr. Wayne McKinny is a retired pediatrician and a resident of Desert Hot Springs. He’s also a hospice patient, diagnosed with terminal bladder cancer.

In the last six months, he has written two opinion pieces published in the local press. Both decried the refusal of our valley’s three major hospitals—Eisenhower Medical Center, Desert Regional Medical Center and John F. Kennedy Memorial Hospital—to participate in or allow any of their associated doctors to participate in End of Life Option medical support. He is currently working with Compassion and Choices on their efforts to get these large medical organizations to support the law—and their patients’ desires.

“Having this right available is emotional insurance for a dying patient,” Dr. McKinny told the Independent. “They know they have it, and that they won’t have any problem, and they can use it. Likewise, it’s emotional insurance for a person who does not choose this option initially, because they know that if they change their mind, they would be able to get the option somewhat easily.”

How can terminally ill and despairing patients in our valley get access to the right to choose the circumstances of their passing?

“The choices that have been made by Coachella Valley health-care systems are not reflective of the attitude of the people in the community,” said Whitaker, of Compassion and Choices. “That’s what we’re really trying to make sure those hospitals there know. Hospitals and health systems are a community resource like libraries, churches or community centers. They exist to serve their communities. For example, during the (statewide) campaign to get the End of Life Option Act passed into law, there was a huge amount of support out of the Coachella Valley. There were a lot of people who did organizing and advocacy to make the option available, and so I think that’s where a lot of the current community disappointment comes from. There’s this population there that clearly wants this option, but the bulk of the apparatus (of medical providers) that is there to serve the community isn’t doing it.

Whitaker said his organization has had several hundred people call Eisenhower Medical Center to voice their disappointment.

“We’ve tried to approach the issue with as much civility as possible, but it’s gotten to the point where people who are interested in pushing back should go to our website and sign up to volunteer and add their name to our list,” he said. “We will be holding rallies and community meetings. We have an organizer in Southern California, and the Coachella Valley is an area with a big bull’s-eye on it for him, because we need to get people out and empowered and making some noise about this issue.”


Neither Linda nor I will ever forget that August day when Annette, who had been sick and in pain for so long, chose to end her life

“On the morning that Mom chose to follow through on her decision, we sat her on the edge of her own bed in her own room,” Linda said. “We followed carefully the process the pharmacist had described. The first drug she took was an anti-nausea medication to ease the ingestion of the other drugs in the quantities prescribed. Then, about 45 minutes later, the second drug was taken; it was a beta-blocker intended to slow down the heart rate. Then about another 15 minutes later, Mom took a large dose of Seconal, which would cause death. We had opened up 90 capsules and mixed their contents into one half-cup of applesauce, which she ate. (It could be mixed into juice or other items that the pharmacist approves.) The pharmacist had emphasized that Mom had to follow the procedure closely, and that there was a certain timeframe in which the drugs had to be completely consumed to avoid any mishaps.

“After she finished taking the last of the Seconal, we helped her lie down on the bed and made her comfortable. I had an aide, who Mom had grown close to, helping me that morning, and it was a very good idea to have her there. It’s good to have someone there with you for support.

“Very quickly, like after 30 seconds, Mom closed her eyes and drifted into a peaceful sleep. Her breathing was a little labored, but that was pretty much normal for her at that point. And then in about 20 minutes, with no gasping for breath or anything, she just stopped breathing. And it was so peaceful. It was really incredibly peaceful. She had her favorite cat with her, and it was just a beautiful death. She wanted it to be very quiet. We had put her in very comfortable clothes, and it was very beautiful.

“It’s the way we all should die.”

To enroll in a Kaiser Permanente health plan and/or to receive information about their End of Life Option services, call 800-464-4000. For more information about the End of Life Option Act, visit www.compassionandchoices.org/california.

Published in Features

A divided California Legislature passed a law in September allowing terminally ill patients to seek a prescription to end their lives—and now, some in a divided California are looking at ways to overturn that law.

The first attempt was a ballot initiative by the groups Seniors Against Suicide and the Coalition Against Assisted Suicide, which would have given voters a choice to overturn the End-of-Life Option Act in November 2016. Their deadline to collect 365,880 voter signatures was Monday, and group spokesman Brian Johnston says they came up short.

“It’s an arduous process,” he says of signature-gathering.

The California Secretary of State will not have a report on the signature count until next week; each county has eight business days to do a rough count of signatures before submitting them to the state, which will then verify the signatures if a measure looks like it has sufficient support to make it onto the ballot.

Johnston says opponents will continue battling the law. 

“The referendum was only the first opportunity,” he says.

An alternate plan may focus on legal action, because the bill was passed in an extraordinary session on health. Critics have said this was a misuse of an extraordinary session, which is intended to focus on a narrow issue, giving lawmakers a chance to hammer out policy after the regular legislative session has ended.

The original bill was introduced by state senators Bill Monning, D-Carmel, and Lois Wolk, D-Davis. They withdrew it when it was unclear whether the bill had sufficient support to make it through various committees. It was reintroduced as ABx2-15 in the extraordinary session.

The law—which will expire in 10 years if not extended—will allow adult patients who are mentally competent and have a terminal illness, with a prognosis of six months or less to live, to seek a lethal prescription, with a requirement to see two separate doctors.

When Gov. Jerry Brown signed the bill in October, he weighed in with his own questions about the ethics of ending a life.

“I have discussed this matter with a Catholic bishop, two of my own doctors and former classmates and friends who take varied, contradictory and nuanced positions,” Brown wrote.

“In the end, I was left to reflect on what I would want in the face of my own death.”

A version of this story originally appeared in the Monterey County Weekly.

Published in Local Issues

My father’s recent death was not beautiful, and neither were any of the other deaths I’ve witnessed of late. This has left me wondering about a better path.

Death is not easy, to be sure, but these were made particularly painful by medical interventions—or perhaps I witnessed the confusion between saving a life and prolonging the process of dying.

So I threw a party. Or rather, I held my first Death Café—and it turned out to be a lively, invigorating affair.

In Europe, there’s a tradition of gathering to discuss important subjects—a café philo, for a philosophical café, or café scientifique, a scientific café. Now there are café mortel, or death cafés. A death café isn’t an actual place; it’s a temporary event in various locations, such as my home, complete with decorations and, for example, a cake with DEATH: THE FINAL FRONTIER scrawled on top.

My gathering included spunky friends, all in our middle years, all of us healthy. As it turns out, this is the segment of population that most seems to care about shaping the end of a life. A Pew Research Center study found that less than half of people older than 75 had given much thought to the end of their lives, and incredibly, only 22 percent of them had written down wishes for medical treatment. The same study, though, found a sharp increase in all adults putting something in writing (six of 10 of us), which indicates that percentage-wise, it’s the slightly younger folks who are preparing for their inevitable deaths.

This does not surprise me. For the last 14 years, I’ve been one of the 28 million Americans currently watching as someone dies. Baby Boomers and GenXers are caught in an unprecedented tide of taking care of both children and parents (not to mention ourselves and our own aging bodies); we are the first generation to be caught in this particular kind of care-giving-and-slow-death crisis. With medical intervention and technological wizardry, we’re forced to make decisions about procedures and medicines and ethics as never before. And we find ourselves without much guidance in a culture that’s conflicted and confused about dying.

Which is why we’re willing to talk. At my Death Café, I encouraged us not to focus on the deaths we had witnessed in the past, but instead to speak of the deaths that we want for ourselves in the future. Various results emerged. Half were afraid of the suffering that can precede death; half were afraid of death itself. A few of us had practiced death (“pretend this next breath is your last; what does that feel like?”), but all of us were convinced that doing so would only intensify and enlarge our lives.

The zeitgeist of this new movement is just now gaining momentum, but I can feel its strength and power. An unprecedented 66 percent of Americans now think there are instances in which doctors should allow a patient to die instead of doing everything possible to save that patient’s life. People would like to die—and sometimes would like others to die—and this doesn’t make us morbid or crazy or unethical or mean. No. We are merciful and kind. We are as moral as we are mortal. We just want to know how to gracefully do that is going to happen anyway.

What lies ahead is unexplored territory, much like death itself, really. Here in California, “Death With Dignity” legislation recently became law, and the state representative in my Colorado hometown is reintroducing a similar bill in that state. Don’t get me wrong; I am all for funding research, finding cures, and offering respite to caregivers. But it’s also our ethical duty to try for a chin-up, heart-steady end.

My father contracted pneumonia after 14 years of suffering with Alzheimer’s. He was given antibiotics; I was not in a legal position to object, but I’d have asked for comfort care only—not because I didn’t love him, but because I loved him enough to want him to have as natural and relaxed a death as possible. Instead, I saw him grimace in pain and fear. I saw tubes and syringes and the sores on his body. I saw the family he’d worked so hard to create break apart under the pressure. I saw his blue eyes fade, and they taught me well: This could happen to you, too.

Death is perhaps the greatest mystery we face, and the actual act of dying is the last physical act of our lives. We can strive to do it our way and to do it well. If anything deserves preparation, or some renewed clarity, death might be it. Which is why I suggest throwing a lively party.

Laura Pritchett is a contributor to Writers on the Range, an opinion service of High Country News. Her novel Stars Go Blue is based on her experience with her father.

Published in Community Voices

Regular readers know that I do a lot of work regarding end-of-life decision-making. I once discovered an advance directive written by a man who went to great lengths to define the things he believed made him “a person”:

  • The ability to understand what is happening around me.
  • Awareness of the consequences of medical decisions related to my condition.
  • Knowing who I love and care about, and being able to recognize and communicate with them.

He said that if ever he were no longer a person, based on this definition, he didn’t want his life prolonged. He also made a special request of his loved ones: “If ever anyone is in my presence discussing me or my condition, I want them to talk as if I were present.”

Reading that made me realize how often we inadvertently ignore someone’s presence. Nurse’s aides may be so focused on emptying waste or washing floors that they seem unaware of the person in the bed. Doctors sometimes consult with their associates about one’s condition and treatment while seemingly forgetting the patient can hear them. Family members will talk in the third person about something funny that Dad did when they were younger—although Dad is right there, even if he seems asleep or oblivious.

I once suffered from temporary aphasia after coming out of a surgical anesthetic—I was able to think clearly, but unable to speak or be understood. I was terrified. I was reminded of that scare at a recent recitation by the writers in the “You Don’t Have to Be Hemingway” group in Palm Desert.

One writer’s piece in particular really touched me. Patty Stevens (upper right) is a dynamic personality who is about to turn 80. She’s been in the desert 11 years from Indiana, and is the mother of six, with 14 grandchildren and six great-grandchildren.

“I’m not a writer,” she says. “I just thought this was a good time for me to try, and all of a sudden, these stories started coming out. Now, I just love it.”

Stevens ran a day-care center for 38 years and entertained the children with song and dance, “but I couldn’t read in front of other people. Now I can’t wait to read out loud what I’ve written.”

Her contribution was in response to the suggestion to write from the perspective of something inanimate. She decided to take a broader view of what “inanimate” means, and created “Old Man Silenced by Stroke”:

When I was a little boy in grade school, my teacher told us to stop talking so much. … Miss Jackson told us about an old man sitting on a park bench all alone, not talking because he had used up all his words when he was young. That scared me. So I was careful to only talk when I felt I had something important to say.

I had a good life—great education—wonderful wife and three children. And to my surprise one day, I had a stroke. It was a bad stroke with no warning. I ate right. I exercised. I loved my life. And I had a very bad stroke.

Now here I am in a hospital bed with no movement of my body.

I can see and hear. But no one knows I’m here inside this wasted body.

Nurses change me, feed me, clean me, talk nice to me. I have a lot of words inside me, and I can’t speak. I saved all my words for a long life. What am I going to do with them now?

My wife came to visit and talked and talked and talked. I wanted her to STOP. I heard all about her activities. The children visited to tell me what vacations they were taking and were planning. I want to go. I want to tell them the plans I have.

My nurse will bring flowers and read cards to me. They don’t show them to me. They just read who they are from and put them on the door for others to see. Visitors laugh and tell jokes about world affairs. I want to read a paper. Please turn on the TV for me to hear and see news. …

I wish there was a plug I could pull. If God takes this much of a body and leaves these senses, it’s not fair. This is too painful.

I can still pray for others. That’s what I’ll do. I’ll do it the rest of my life. Pray for the world, for peace. And pray for others, especially those who come to visit. They need to appreciate their life more. And be considerate of others’ ears when they talk. Smile more.

I still have my life. I’m just a little short of some things, but I will give it my all till I die.

The idea of being unable to communicate may be the condition people dread most. I still remember the fear I felt. However, Patty Stevens’ “Old Man Silenced by Stroke,” albeit fictional, communicates the fact that there is still somebody in there.

Maybe my concept of personhood needs some adjusting. I think of that aforementioned man’s attempt to define what it means to be a person, and how easily I agreed with his need to be able to communicate. I think of those who find a way, through sheer will, to connect through eye blinks or artificial intelligence or because a devoted spouse can read their thoughts.

If I were trapped inside my own mind, unable to communicate in any way, I would no longer define myself as a person, although I might still be alive. What defines it for you?

Anita Rufus is also known as “The Lovable Liberal,” and her radio show airs Sundays from 11 a.m. to 1 p.m. on KNews Radio 94.3 FM. Email her at This email address is being protected from spambots. You need JavaScript enabled to view it.. Know Your Neighbors appears every other Wednesday.

Published in Know Your Neighbors

Thursday, April 16, is National Healthcare Decisions Day—devoted to encouraging you to fill out an advance directive indicating who should speak for you if you can’t, and what end-of-life treatments you do and do not want.

If you’re someone who doesn’t want to think or talk about this … KEEP READING! Also, I’m not just talking to aging coots and crones—if you’re a legal adult, 18 or older, I’m talking to you!

National Healthcare Decisions Day is an “unofficial” national holiday—a collaborative national, state and community initiative to ensure that the information, opportunity and access needed to document end-of-life healthcare decisions are available to all adults capable of making informed decisions. It’s meant to educate and empower you about your rights and the importance of your wishes being respected.

Some quick background on the law: The first major decision about a constitutional right to refuse treatment was way back in 1891, when the U.S. Supreme Court recognized a common law right to “possession and control” of our own bodies. In that case, a guy had suffered injuries in a work-related accident, and his employer wanted to surgically “search” his injuries to see if his claim was justified. The court said no, and this became the precedent for many later decisions, including the right to privacy and the right to refuse unwanted treatment. In essence, the court said you “own” your own body, and you can exercise certain rights as a result—much like the ownership of land. Your body is yours, and it cannot be violated by others—even the state—unless there is a really good legal reason.

In 1914, Justice Benjamin Cardozo reconfirmed that notion, writing, “Every human being of adult years and sound mind has a right to determine what shall be done with his own body; and a surgeon who performs an operation without his patient’s consent commits an assault.” That formed the basis for requiring “informed consent” for medical treatment—those pesky forms shoved at you right before surgery that list all the horrendous worst-case possibilities.

Two later cases gave additional constitutional support. In 1986, a California Appeals Court said that a “competent adult patient has the legal right to refuse medical treatment … and, whenever possible, the patient himself should then be the ultimate decision-maker.” In 1990, the U.S. Supreme Court said that “a competent person has a constitutionally protected liberty interest in refusing unwanted medical treatment.” Also in 1990, Congress got the message and passed the Patient Self-Determination Act, which instructed each state to develop forms for individuals so they could name someone to speak for them if they were unable and to document their own wishes about treatment. Free forms are available in each state and can easily be located online.

Unfortunately, the public-education portion of the Patient Self-Determination Act was never funded. Instead of an effective public-service announcement (“This is your brain on drugs …”), we got 50 different forms and laws. If you had an advance directive in one state saying you wanted no extraordinary measures taken to prolong your life—for example, after a severe auto accident—that didn’t mean it would apply in another.

Luckily, individuals and organizations have stepped in to fill the void. One group, Aging With Dignity, has designed “Five Wishes,” a booklet that is accepted in more than 40 states; in addition to the two legal questions (asking who will speak for you if you can’t, and what you do or don’t want regarding treatment), the form offers other questions that are not legally binding, but which may help open lines of communication.

If you were unconscious, and you loved classical music, would you want acid rock played in your room? Is there someone you absolutely do not want there? Is there something unsaid that you want someone to know? “Five Wishes” offers the opportunity to write down things that state forms don’t cover.

There are groups that facilitate discussions about end-of-life decisions, including those catering specifically to young people, who usually don’t think this is their issue because the end of life seems too far away. Just Google “Advance Directives,” and you’ll be amazed at the wealth of information and support you’ll find, much of it free.

Studies have consistently shown that more than 60 percent of us want our own choices respected, but only about 20-30 percent of us have ever filled out forms. Since forms are not valid if you’re incompetent to make a decision—for example, after a severe brain trauma or advancing dementia—it’s important to have these conversations and get forms completed before you’re facing a crisis. You don’t need an attorney or even a notary: Any two disinterested people (not family members or health-care providers) can witness your signature.

National Healthcare Decisions Day offers the opportunity to focus on doing something you should do anyway. What are you waiting for?

Anita Rufus is also known as “The Lovable Liberal,” and her radio show airs Sundays from 11 a.m. to 1 p.m. on KNews Radio 94.3 FM. Email her at This email address is being protected from spambots. You need JavaScript enabled to view it..

Published in Know Your Neighbors

My friend in Indian Wells was in his 80s, a retired executive and published author suffering from a recurrence of cancer. He had successfully fought it for several years, even entering an experimental drug program—but it was finally clear the cancer could not be beaten. As his ability to move around freely diminished, he realized he would not be able to write nor to pursue his voracious reading habit much longer.

He called and asked if I would meet with him to talk about his end-of-life choices, because of my long work on such issues; I immediately said I’d be there. He laid out his concerns and had clearly thought through his options—including shortening his own life. He felt the quality of his life quickly ebbing away. With no spouse and no children (though he had other close family connections), he finally did make the choice to end his life—secretly and very much alone.

He’d wished he’d had the strength left to move to Oregon, where there is a death with dignity law in place; I wish he’d have had that option, too. Alas, he didn’t. (A broad article about death with dignity ran at CVIndependent.com last week, and is the cover story in the March Independent print edition.)

First, the bad news: Nobody is getting out of here alive.

Now, the good news: California may finally join five other states—Oregon, Washington, Montana, Vermont, and New Mexico—where doctors will not be held criminally liable if they assist a mentally competent, terminally ill patient who makes a conscious choice to shorten the dying process. Also, the Canadian Supreme Court ruled in February that those with terminal illness who are experiencing suffering have the right to a physician’s assistance.

The Options at End-of-Life Act, Senate Bill 128, was introduced in Sacramento in January; the bill is similar to the laws in Oregon and Washington. There is also a pending California lawsuit to protect physicians who assist a dying patient from the state’s ban on assisted suicide. That lawsuit, brought by a cancer patient and five doctors, would mean that “physicians who provide such assistance are not helping the patient commit suicide but are giving them the option of bringing about a peaceful death.” 

Assisted dying became legally available in those five states either through voter support, legislative action or via the courts. The requirements under those laws are that two doctors must certify that a patient is within six months of probable death and is mentally competent for decision-making; the patient must then get a prescription and self-administer it. Safeguards in Washington prevent third-party abuses.

When Californians last considered “Death With Dignity,” it was via Proposition 161 on the 1992 ballot (the product of Americans for Death With Dignity, an organization of which I was then president). In spite of polls showing widespread support for the concept, the initiative garnered only 46 percent of the vote after well-financed opponents scared voters with ads featuring a nefarious-looking doctor heading down a dark hallway, needle in hand, with a voiceover warning that abuses would put the vulnerable at riskChurches throughout the state preached from the pulpit that parishioners must help defeat the initiative.

The California Medical Association also opposed that 1992 effort, insisting that assisting in a death is a violation of the “do no harm” doctrine. Those who support a right to the choice of a death with dignity assert that extending one’s life artificially once the death process has begun may, in fact, be the real harm. A recent Medscape survey of 21,000 doctors found that 54 percent of doctors nationwide now support an option for assisted dying—and would want that option for themselves.

Compassion and Choices is a national organization that offers end-of-life information and consultation services, where trained individuals provide information and support to guide someone through the process, working with the patient, medical professionals and families. One such volunteer is Dwight Moore, a psychologist from Washington who spends half the year here in the Coachella Valley. Now that SB 128 has been introduced in Sacramento, Moore has been named co-chair of the Coachella Valley Action Team, communicating with and organizing local individuals to support passage of the Options at End-of-Life Act. He has enlisted more than 300 local supporters.

To those involved in death with dignity, the differentiation between “assisted suicide” and “assisted dying” is clear.

“Suicide is a traumatic resolution to a precipitating event,” says Moore. “Assisted dying is about the patient’s autonomy when the process has already begun. In fact, many people who qualify to receive a lethal prescription don’t even use it; the sense of empowerment is often enough for them to feel a sense of control over the process.”

When a request comes in from someone considering exercising their right under the Washington law, Moore’s support team meets with the patient, investigates the appropriate application of the law, gets the participation of the doctors involved, and supports the patient and the family throughout the process. They may even help prepare the medications—but the patient must self-administer.

“Even if we get a liquid prescription because someone has a feeding tube, the patient must inject the drug—we cannot help,” says Moore.

Regarding fears of abuse of these laws: When Washington’s voters approved their law, and the court ruled in Montana in 2008, Oregon already had 11 years of data and “an unblemished record.” Moore’s experience has been overwhelmingly positive. “The difference this can make for individuals and their families is amazing,” he said.

There are unresolved issues—yet the concern of people with disabilities that they may be pressured to end their lives is in direct contradiction to the safeguards written into the laws. People with dementia would not qualify under the laws since they would not be considered mentally competent, even if they had previously given specific directions in an advance directive. People in situations in which they are not able to self-administer would also not be eligible under the safeguards.

I certainly want the option of making the choice of how I die, and I want to be sure I have all options available to me. I want my doctor to not only do everything possible to fix whatever’s wrong, but to be honest and have the ability to support me if there’s no fix—and to assist me if I don’t want to drag out the process. 

We don’t talk very openly in our society about death and dying—but nobody is getting out of here alive. We need to have these conversations.

I just wish I could have been there when my friend ended his dying.

For more information, call Dwight Moore at 360-223-4958, and hear Anita’s radio interview with him here. Anita Rufus is also known as “The Lovable Liberal,” and her radio show airs Sundays from 11 a.m. to 1 p.m. on KNews Radio 94.3 FM. Email her at This email address is being protected from spambots. You need JavaScript enabled to view it..

Published in Know Your Neighbors

Page 1 of 2