Aid-In-Dying Law Comes To California
Wednesday, December 9, 2015
Kenny Goldberg, health reporter, KPBS News
Sunita Shailam, general practitioner, Sun Health Medical Clinic
Part 1 of 3. Beginning next year, terminally ill Californians will be allowed to request a lethal dose of drugs from a physician.
Part 2 of 3. Beginning next year, terminally ill Californians will be allowed to request a lethal dose of drugs from a physician.
Part 3 of 3. Beginning next year, terminally ill Californians will be allowed to request a lethal dose of drugs from a physician.
When Eurika Strotto has a medical appointment, she likes to tell her doctor what she and her wife, Juanita, are up to.
“Had family yesterday," she told her physician. "Friends on Saturday. And then the rest of the week we get to relax, just the two of us.”
"Nice!" replied Dr. Sunita Shailam, her primary care doctor.
After a few moments, Shailam asked the vital question.
Strotto has ALS
“So how’s your health doing?”
“Ah, it’s going OK," Strotto said. "My hands are getting weaker, more of a claw. I have Julie now to help me with my showering and getting dressed in morning, helping with cleanup, stuff like that.”
Julie was an in-home aid who temporarily worked with Strotto.
Strotto has ALS — amyotrophic lateral sclerosis, otherwise known as Lou Gehrig’s disease. It’s a rapidly progressive neurological condition that eventually robs people of the ability to move, eat or even breathe.
Strotto, 53, was diagnosed with ALS in 2013.
“Well, when I heard ALS I had no clue," Strotto said. "I didn’t know what it meant. And then I read up on it, and I was mortified."
Strotto used to be exceptionally fit. Now she can no longer walk, or go to the bathroom by herself. She spends much of her time in a wheelchair.
ALS is invariably fatal.
Strotto figures she has less than six months left.
Strotto wants to pick her time to die
“If what they say at the clinic is true, then it might be more than that," she told Shailam. "But that would be on feeding tubes, and you know, tracheotomy or whatever it’s called, and that’s not something I want to do at all.”
That’s why Strotto wants to take advantage of California’s new aid-in-dying law when it takes effect next year. Californians, like Strotto, who have been diagnosed with a terminal illness will have the option to choose exactly when they’d like to die.
To do so, Strotto will need to get another physician to confirm her terminal diagnosis. The doctors will have to affirm that Strotto is mentally competent to make her own decisions.
She’ll also have to make two requests to Shailam for a lethal dose of drugs. And at the end, Strotto will have to be able to take the medication by herself.
Strotto is glad she’ll have the option to die before she totally loses control of her body.
“I think it’s just humane. We help our animals out when they suffer," Strotto said. "Why don’t we allow the same for ourselves? And I know that they’re worried about abuse. But the way that this is written is, like, you have to say it. Personally, you have to say that this is what you want. That you totally understand it.”
Some doctors don't like it
Shailam concedes that some physicians don’t want to have anything to do with helping a patient die.
"I actually spoke with a local palliative care doctor that works at the hospital, and she personally would not do it," Shailam said. "And I was surprised, because she does end-of-life care. I spoke with a couple of other colleagues — one of them was thrilled and all for it, and one of them said he just thought there was a lot of room for abuse.”
Under the law, doctors can refuse to help a patient take their own life.
But Shailam believes doctors have a duty to their patients to relieve suffering, whether it’s physical or emotional.
“You know the number one rule in medicine, and the Hippocratic oath, is do no harm," Shailam said. "And you want to prevent hurt. You actually want to prevent hurt by doing this.”
At the end of their visit, Shailam assured Strotto and Juanita that she’ll help them when the time comes.
“Toward the end, and whatever, you know, Jorge and I will be there for you," Shailam said. "If we need to come to your home, we’ll do whatever it takes to make you comfortable. I don’t want you to be scared about it. We’ll make it as pleasant as we can.”
An oncologist's view
"This is a linear accelerator," he said, pointing to a massive machine.
The linear accelerator uses high-energy X-rays to destroy cancer cells. Zentner, a radiation oncologist, said he can attack tumors with sub-millimeter accuracy.
“And so we can treat really small lesions, we can treat brain lesions, we can offer very sophisticated treatments with this machine, and we can also do things that are really, really simple," Zentner said.
Radiation therapy can be used in combination with surgery and chemotherapy to treat cancer.
But, as Zentner explained, it’s also used to help ease the pain of patients whose cancer is too far along. And in those cases, “The primary endpoint is really about comfort care, about how do we make this patient comfortable," Zentner said.
California’s new aid-in-dying law gives patients another option.
“And for some patients it’s going to be a very welcome option, because they’re going to be in tremendous pain, or they’re going to be in suffering," Zetner said. "And for those of us who’ve witnessed patients go through this process, there’s going to be some patients who will choose this option, that before this was not available for them.”
Critics of California’s law believe it will create an environment that could encourage people who are terminally ill to take their own life.
But that hasn’t been the experience in Oregon.
In 1994, Oregon became the first state to approve a so-called death-with-dignity law.
Last year, according to the Oregon Health Authority, 155 people in Oregon died from taking a lethal dose of drugs under the law. That represented less than one-half of one percent of the total number of deaths in the state.
Advocates say the law has prompted more people to take advantage of hospice care. In fact, Medicare data reveals in 2013, Oregon had the sixth highest utilization of hospice care in the nation.
What the law might do
Supporters hope California’s law will lead to similar trends here. And they hope it will compel doctors to become more comfortable talking about death.
Dr. Holly Yang specializes in hospice medicine and palliative care at Scripps Health.
She said doctors don’t get much training in having end-of-life discussions. Yang said as a result, they often do a disservice to terminally ill patients who have questions about what lies ahead.
“We simply say, 'oh gosh, I’ll feel sorry for you, here’s a prescription.' Or, we say, 'I don’t do that, sorry, don’t talk to me about that,'" Yang said. "That actually doesn’t address the root cause of why they’re asking. It doesn’t get to the heart of the matter, which is: I’m in a vulnerable place, I’m worried, my family needs help, and so do I.”
Dr. Robert Wailes is a pain management specialist with offices in Oceanside and Encinitas.
He said in other states with aid-in-dying laws, more people have requested a lethal dose of drugs than have actually taken them.
“I think that’s a good reflection of one of the reasons why patients want to have this available – it’s just to have control, to have that option," Wailes said. "And they may not exercise the option. Again, the majority of the patients do not exercise the option, even though they have the means to do it in hand.”
Strotto's bucket list
But Strotto said she plans to exercise the option — just as soon as the law takes effect.
Even though Gov. Jerry Brown signed the bill into law on Oct. 5, it won't take effect until 90 days after the California Legislature terminates its special session on healthcare.
Until then, Strotto is trying to check everything off her bucket list.
Strotto and her wife, Juanita, spend as much time as they can camping at Silver Strand Beach in Coronado.
Last year, they traveled all over the United States, and drove up to Vancouver.
“We took a week-long cruise up to Alaska. We went to watch the FIFA Women’s soccer final. Go USA! That was fantastic," she said, smiling.
As she sat in her wheelchair looking out at ocean, Strotto admitted that she probably won't have the stamina to go on more long trips.
No 'woe is me'
A guide to end of life care planning is provided by California's Attorney General Office. Click here to see the guide.
ALS is robbing her of her energy, and her ability to do things she used to take for granted. But she doesn't sit around saying ''Woe is me."
“I’ve always been a proactive, active person. I don’t see the point of saying ‘woe is me,’ because it’s not going to change anything," Strotto said. "It’s just going to make me, and the people around me, miserable.”
Doctors have given her less than six months to live. She’s decided she doesn’t want to end up on feeding tubes, unable to take care of herself.
“Because I don’t have to suffer like a lot of other people have had to, I can say now, I’m done," she said. "You know, I’ve had a great life, I’ve been a very fortunate person, but I don’t want to do this anymore. It’s worse being alive than it would be not being around anymore.”
Juanita said she’s fully supportive of her partner’s decision to end her life before the disease takes total control.
“And that’s not because I don’t want her to be around anymore," she said. "It’s because I don’t want her to have to deal with her body dying, and have no ability to do anything about it, and choke to death some day.”
Caroline Boaz is an advanced practice nurse who specializes in palliative and hospice care at Sharp Chula Vista Hospital. It’s her job to coordinate a dying patient’s care, and make sure that their physical and emotional pain are treated properly.
Boaz said with the right kind of care, most dying patients shouldn’t feel the need to take their own life.
"But some people don’t want to suffer through seizures and some of the things that can happen at the end of life," she said. "And I completely understand that. And I think it’s wonderful that people will have a choice."
Strotto said to be sure, she doesn’t want to die.
“I’m a little scared," Strotto admitted. "But where this disease is going to take me, if I have to live through it, scares me far more than death does.”
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