CVIndependent

Thu05242018

Last updateWed, 27 Sep 2017 1pm

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

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

On Valentine’s Day, I did something that, at one time, I never thought I’d be able to do: I married my boyfriend.

When I first started dating the man who is now my husband, some 12-plus years ago, same-sex marriage was not legal anywhere in the United States. My, how times have changed: As of this writing, same-sex marriage is legal in 37 states, as well as the District of Columbia—and even the staunchest same-sex-marriage opponents concede it’s probably only a matter of time before it’s legal throughout the United States.

The rate at which same-sex marriage has become accepted and legal has been simply stunning; after all, it has been less than 11 years since it first became legal anywhere in the U.S. (in Massachusetts). And look where we are now.

Unfortunately, legal change on other important social issues has not been so swift. This brings us to a recent Independent story, by Sacramento-based writer Melinda Welsh, on the right-to-die movement. (It's the cover story in our March print edition; you can also read more from Anita Rufus on the local angle here.)

Oregon’s Death With Dignity Act was approved by voters in 1994 (and it went into effect after an injunction was lifted in 1997)—yet today, physician-assisted death is legal only in three states, period. This is despite the fact that 70 percent of Americans say physicians should be able to “end (a critically ill) patient’s life by some painless means” if the patient so desires, according to a 2014 Gallup Poll.

However, the legal tide may be about to change, thanks in part to Brittany Maynard. Last year, the California resident was forced to move to Oregon in order to die with dignity after she was diagnosed with terminal brain cancer. She made her situation very public—and got a lot of attention in the process, before passing away on Nov. 1, 2014, at the age of 29.

In the wake of Maynard’s crusade, progressive lawmakers around the country are reintroducing death-with-dignity legislation. Welsh’s story looks at the situation in California. It’s a fantastic piece; you really should check it out, if you haven't already.

As always, I encourage you to let me know your thoughts; my email address is This email address is being protected from spambots. You need JavaScript enabled to view it..

Published in Editor's Note

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

The call comes on your cell when you least expect it. The doctor, a specialist from out of town, says: “The telephone isn’t the ideal way to deliver test results, but ...”

You urge him to proceed. He tells you about your brain cancer.

It has metastasized with a vengeance. His words are both shocking and anticipated. You know you are hearing your own death sentence.

You have fought valiantly for years to be rid of this disease. You’ve endured the onslaught of surgery, radiation and chemotherapy. Your loved ones rallied in support. You’ve done everything you can to continue living fully. Now, you find yourself at a new stage, with six months to live. You’re aware that people who die with your disease may face distressing events before the end: seizures, loss of functions, dementia, anguish and undeniable pain.

What are the options in this hypothetical?

In California, you could choose ever-more-aggressive interventions in the unlikely hope of a cure. You could green-light a medical trial and perhaps extend your life, while aiding science. You could choose palliative care and hospice, in the unassailable theory they may provide you a gentler exit. You could even exercise your right to refuse food and drink, a difficult path that leads to death in seven to 10 days.

Or you could move to Oregon. There, you would have an extra option: You could choose to end your own life, at the time and in the place of your choosing, with legally prescribed, fast-acting barbiturates provided by a doctor.

As of right now, this final option is illegal in California. In fact, your loved ones could face criminal prosecution if they helped you do so here.

But all this may be changing.

On Jan. 21, state Sen. Lois Wolk announced legislation that would bring an “end-of-life choices” law to California. The law would be fundamentally like Oregon’s 1997 Death With Dignity Act—requiring an adult patient to have residency in the state, and two doctors in agreement that he or she has less than six months to live, as well as full mental competency. Other safeguards Wolk referred to as “crucial”—for both patients and physicians—will also be folded in.

“It’s time,” she said. “No one should have to go through horrific pain and prolonged suffering when the end is clear.”

A longtime advocate for more compassionate end-of-life scenarios, Wolk authored a groundbreaking 2008 law that provides seriously ill patients with a new mechanism—Physicians Orders for Life Sustaining Treatment, or POLST—to ensure that their wishes are honored regarding end-of-life care. But Wolk, the state senate’s new majority whip, will likely face a tough battle this time. The right-to-die subject has been exceedingly controversial when it has come up in California’s past.

So why introduce it now? Because of Brittany Maynard, the 29-year-old East Bay newlywed who, after being diagnosed with late-stage brain cancer (glioblastoma multiforme) last spring, became the face of a movement when she chose to relocate with her husband to Oregon so as to end her life under that state’s Death With Dignity Act.

“Doctors prescribed full brain radiation,” she wrote in an essay for CNN. “The hair on my scalp would have been singed off. My scalp would be left covered with first-degree burns. … My family and I reached a heartbreaking conclusion: There is no treatment that would save my life, and the recommended treatments would have destroyed the time I had left.”

Young, attractive and articulate, Maynard’s passionate defense of her right to leave life on her own terms went viral. Her YouTube video drew 13 million views. Her saga was written up in hundreds of newspapers and appeared on the cover of People magazine. Maynard partnered with the nation’s premier “aid in dying” nonprofit, the Denver-based Compassion and Choices, and triggered an outpouring of new energy and funds to its cause.

Ultimately, the sympathy generated by Maynard’s story pushed the “death with dignity” movement forward in ways the country is just starting to see play out.

A month after Maynard’s November death, the already substantial public support for “death with dignity” took a significant bounce. A Harris Poll found that 74 percent of American adults now believe terminally ill patients in great pain should have the right to bring their lives to a close. Even “physician-assisted suicide”—a term controversial in right-to-die circles—now has a 72-percent favorable rating.

“I think (Brittany Maynard) deserves a lot of credit for being willing to be so public about her dying,” said Wolk, who said the young woman’s story was “very much” part of why she and co-author state Sen. Bill Monning chose to the introduce legislation, Senate Bill 128, now instead of later.

“People were very moved by her story,” said Wolk. “It struck a chord.

“To be forced to set up residency outside California to relieve your self from suffering? That’s not right.”


'THINGS CAN REALLY GO WRONG'

With her short brown hair, eloquent eyes and gracious smile, Jennifer Glass (right) welcomed me into her San Mateo home, ushered me to a seat in front of a cozy fire by the Christmas tree, and handed over a cup of steaming coffee.

The warm environs seemed to alleviate the difficulty in speaking openly about the topic at hand: Glass’ late-stage lung cancer and statistically probable decline, and death, from the disease.

A formidable communications professional during her working career—with stints at Oracle, Intuit, Sony and Facebook—Glass married the man of her dreams, Harlan Seymour, in August 2012. They settled into family life. Four months later, while giving her a back rub, Seymour found a lump on her neck that felt “like little peas in a row.”

Glass was soon discovered to have Stage IIIB lung cancer (not smoking-related) that had metastasized to the lymph nodes in her neck. At the time of her diagnosis, the American Cancer Society estimated the likelihood of her five-year survival rate at just 5 percent. The then-49-year-old underwent radiation and two aggressive rounds of chemotherapy, causing her to lose her thick brown hair.

Her cancer is, thankfully, now in a period of “treated containment.” She takes the oral chemotherapy drug Tarceva daily that allows “two to three good hours” per day, she says. The efficacy of Tarceva tends to be two to four years before cancer mutates around it.

Glass, who developed a following for her YouTube video “A Photo a Day: One Year With Cancer” and for blogging about her disease on The Huffington Post, has strong beliefs about how she wants to go when her time comes.

“I believe I should have the legal choice to end my life calmly, peacefully and with dignity,” she said.

Like Maynard, the tech-savvy Glass wants to bring the right-to-die debate to a generation that’s become accustomed to making its own choices when it comes to certain issues. “It’s like what we’ve seen with gay marriage,” she said referring to the sea change in public opinion and policy on that issue in a short time span. “There’s a greater desire for personal choice ... and quality of life. And that has to include end of life.”

When first diagnosed, Glass contacted Compassion and Choices—which was largely responsible for creating and passing Oregon’s Death With Dignity Act. She sought advice and counsel. A volunteer came to her home and explained advance-care directives, POLST forms, the role of hospice, and what was and wasn’t legal in California when it comes to the end of life. Glass, who had been an advocate on the right-to-die issue even before her diagnosis, was thankful to have that information going into the physical and emotional fight of her life.

After her marathon cancer treatment was completed, Glass contacted Compassion and Choices a second time and asked how she could help their effort to make aid in dying legal in California.

She is unapologetic when explaining why hospice and palliative care alone are not sufficient to calm her fears.

“There is some exceptionally fine hospice care,” she said, “but it’s a spectrum. Sometimes it’s simply not possible to eliminate or manage a dying person’s pain.”

People like Glass don’t much like the word suicide—as in “physician-assisted suicide”—imprinted over the right-to-die option. Suicidal people are sad or depressed and want to die, she said. “I’m doing everything I can to live! But I want control over my death if it’s going to go in a really ugly way.”

She and others suggest “aid in dying” or “death with dignity” as alternative word choices to “physician-assisted suicide.”

Glass admitted to a kind of black market that exists in states where physician-assisted dying is illegal. “Since becoming part of the cancer community, I’ve known people who are doing whatever they think it’s going to take to end their lives when they want to, including hoarding pills. That can be dangerous if it's not managed.

“It’s the fear, the fear about how this is going to end.”

In her own case, Glass is frightened by the possibility she may be forced to “drown in my own lung fluid in front of my family in my final days. … My quality of life in whatever time I have left would be vastly improved if I knew (a legally prescribed lethal drug) was an option for me under the law.

“If my life is not tolerable, if I’m racked with pain, if I can’t control my functions, if my system is failing … and I have no recourse? That’s the worst thing I can think of—because things can go really wrong.”

If her disease runs its course, Glass says she knows what it would take to move to Oregon and, like Maynard, take the steps necessary to be approved for self-administration of a lethal prescription.

“But I really hope it doesn’t come to a decision where I have to leave my home,” she said. “Particularly because if it comes to that, it’s a decision I’m going to have to make when I’m already very sick.”


'WE’RE DETERMINED TO DO IT'

Toni Broaddus entered a café near the Capitol in Sacramento, primed for her first in a long string of meetings scheduled that day with legislators, staffers and local officials. It was Nov. 19, 2014—the date would have marked Brittany Maynard’s 30th birthday.

“Brittany’s story really galvanized the movement,” said Broaddus, an attorney and social-justice advocate who now directs Compassion and Choices campaign in California. “Her story has really moved us forward in ways we never could have predicted or expected. We have seen a huge increase in supporters, in donors, in volunteers.”

Broaddus, previously a leader in the state’s marriage-equality movement, said Compassion and Choices has set a goal of having California join the five other states in the country—Oregon, Washington, Montana, Vermont and New Mexico—that have legalized aid in dying. The group plans to assist in the passage of California legislation or mount a grassroots effort to get the matter put before voters in 2016.

Such efforts have failed in the past. Attempts to legalize assisted dying in California have been beaten back many times over, thanks to fierce opposition from organizations like the Catholic Church, with its moral authority, and the California Medical Association, with its well-financed lobby. In 1992, the statewide ballot measure Proposition 161 went down, getting just 46 percent of the vote.

The most recent legislative attempt before SB 128, Assembly Bill 374 by Assemblywoman Patty Berg, was taken off the table for lack of support at the end of the 2007 session. Famously, the bill had preachers speaking out in opposition from the pulpits in California. Then-Assembly speaker Fabian Nunez actually described getting a call from his church-going mother at that time, urging him to reconsider his support for the bill.

The powerful California Medical Association is predicted to oppose again this time, though a spokesperson said the group hadn’t yet taken a position on new legislation. The organization, which officially represents just 30 percent of the state’s physicians, has claimed before that assisting in a death is in conflict with a doctor’s ethical responsibility to “do no harm.” Also, the doctors’ group holds that most pain at the end of life can be controlled through medication and comfort care in a hospice environment.

However, a recent poll of 17,000 American doctors by Medscape found that, for the first time, a majority of physicians support “death with dignity” for those with “incurable and terminal” disease.

Also expected to oppose Wolk’s legislation are some in the disability-rights community, who say such a law could open up the potential for abuse by insurers or family members. Patients might be pushed to an early death for the convenience of others, they say. In response to the groundswell of media on Maynard’s story, Disability Rights Education and Defense Fund senior policy analyst Marilyn Golden wrote: “For every case such as (hers), there are hundreds—or thousands—more people who could be significantly harmed if assisted suicide is legal.”

Broaddus disagrees, based on 17 years of data from California’s neighbor to the north. “People talk about concerns about abuse for vulnerable populations,” she said. “But the reality is, that hasn’t happened in Oregon.”

For her, California’s lack of a law simply doesn’t make sense. “It’s hard to understand given the support in the state and the state’s usual leading role on this kind of social-justice issue.”

For Assemblywoman Wolk, the fate of the bill will depend, in part, on individual legislators’ own personal experiences with death and dying.

“More and more people have had a personal, intense experience with dying—either a relative or a friend … and they want it to be different, they know it should be different,” she said.

The legislator pointed out that the Oregon law “is broadly accepted and not that heavily used,” with about 60 percent of the people who obtain a prescription ever actually taking it.

“It’s a comfort for people to know that if it got really bad, it’s there,” she said. “That seems to make people feel better. Just having it is enough.”


'YOU’RE SCARED AND STRESSED'

Barbara and Doug Wilson met in 1967 while residents in the first co-ed dorms at UC Davis. They fell in love, married, launched careers and raised two daughters, never once leaving the safe haven provided them by the city of Davis.

In 2004, Doug, age 57, was diagnosed with Stage IV colon cancer. At first—thanks to two rounds of surgery and chemotherapy—his disease went into remission. But in 2007, the cancer returned. With Barbara constantly at his side, he spent the next five-plus years in and out of infusion rooms, clinics, radiation centers and hospitals, undertaking every treatment and intervention doctors recommended to help save his life.

“He was amazing,” said Barbara of her husband. “He had the most positive attitude. He did not want to die.”

In the spring of 2013, the couple chose to enter hospice care, more than anything because it would get them access to equipment—like a battery-operated oxygen tank—that would help Wilson attend his daughter’s April wedding in Santa Cruz. “Doug walked my daughter down the aisle,” said Barbara, choking back tears. On morphine for pain, he gave his father-of-the-bride speech and, she said, “did the father-daughter dance.”

By the following Friday, he was gone.

Barbara, now 66, looks back with some unease on her husband’s death process those last five days of his life. “The image of a wonderful, peaceful end of life with loved ones around … well, that didn’t seem to happen,” she said.

Home hospice provided qualified people checking in once a day, she said, and availability in emergencies. But basically, she felt left to her own resources, in the company of her two daughters and son-in-law, without experience or knowledge in how to attend to a dying loved one.

“I think it’d be the same with any hospice,” she said. “You’re scared and stressed because this is your loved one. You don’t know what to do.”

She described her husband as on-again, off-again agitated—he was bleeding internally, with his liver shutting down. “We felt we were incapable of dealing with him properly,” she said. She described frustration at her inability to help make him comfortable. She feared his pain and what would happen if she gave him too much—or too little—morphine.

Eventually, in a hospital bed in the living room with his family surrounding him, her husband took his last breath. But the day-by-day countdown to Wilson’s end remains a fairly traumatic memory.

The Wilson’s story illuminates the reality that the actual process of dying can take time and be upsetting, confusing and painful for both patient and caregivers.

Though Barbara believes her husband would not have chosen to take his own life at the end even if it had been legal, she now believes that people should have a right to that option.

“Until you walk in those shoes, you just don’t know. … When it’s my time, I do not want to suffer,” she said, “especially after watching Doug.”


‘WHY IS IT SO HARD?’

Why is it so very difficult for modern society—with its medical aptitude, technological advantages and ability to fulfill desires—to succeed at delivering a “good death” when it is something most everybody wants?

In his recent best seller Being Mortal, Atul Gawande takes a stab at an answer by laying out the limits of medicine and the inadequacies of medical school in preparing physicians to help patients deal with the stark reality of death.

Doctors have been trained to find cures and “to win,” he writes. This simple fact—along with an American health-care system that seems to encourage excessive treatment—continues to make a peaceful death an elusive goal for many people.

For example: Though most people want to pass away at home surrounded by loved ones, 70 percent die in a hospital, nursing home or long-term-care facility after a long struggle with advanced or incurable disease.

Marge Ginsburg, executive director of the Sacramento-based Center for Healthcare Decisions, and a noted advocate for better end-of-life outcomes, has spent the last two decades pushing for more compassion for patients as they near death.

“You’d think 20 years later, we’d have gotten this solved,” she said. “But no, we haven’t.”

Ginsburg, whose nonprofit organization won’t be taking a position on the new Death With Dignity legislation, reminds that California’s end-of-life problem is much larger in scope than the debate over one potential last-resort option. The importance of advance-care directives and the ongoing push for family members, physicians and patients to have candid conversations before crisis hits can not be overstated, she said.

“The ICU is not the time to start finding out what your family members want,” she said.

Still, some see a shift occurring in the end-of-life landscape—perhaps because members of an aging baby-boomer population have begun to see their final acts in sight. Indeed, more doctors are now being trained in palliative care, which focuses on pain relief over cures for terminally ill patients. Also, there’s an increased use of advance-care directives and POLST forms as well as an uptick in the number of individuals dying in hospice care.

Meanwhile, over to the side, is the more controversial subject of a California law that would allow people who meet its dire criteria to self-administer lethal prescription drugs.

Could a shift be occurring there, too?

Wolk believes the answer is yes.

“It’s changing,” she said. “We have to learn. Doctors have to learn. At the end of life, there is a range of things that can happen. We haven’t wanted to think about that. We haven’t wanted to talk about that. But it’s time.”

Those who followed Brittany Maynard’s story this past year—with its tragedy, awareness and resolve—might tend to agree with Wolk that things have to change.

Like Maynard, Jennifer Glass seems utterly brave and self-aware as she moves forward and, despite her disease, attempts to live a full life regardless of the harsh lesson mortality threatens to teach her.

“I feel fine now. But any minute, things could go a different way,” she said. “My great hope is that, in the next 12 to 24 months, if my disease runs its course, then I will have the legal option to procure prescribed medicine and end my life, by my own choice, by my own hand, legally, in my own home.”

And then, as if preparing for an upcoming debate, Glass posed a question to an imagined opponent of a California end-of-life choices law: “Nobody’s saying you have to do this if you don’t want to do it. But who are you to say that I can’t?”

This story originally appeared in the Sacramento News & Review. Below: Brittany Maynard on her wedding day in September 2012, before her January 2014 diagnosis. PHOTO BY TARA ARROWOOD

Published in Local Issues