CVIndependent

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Last updateTue, 18 Sep 2018 1pm

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