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.
I AM CONCERNED AND SHOCKED BY THIS ARTICLE ON SO MANY LEVELS.