Aid-In-Dying Law Comes To California
This is KPBS Midday Edition. I am Maureen Cavanaugh. California's a new end of life option law is expected to go into effect next year and when it does, one San Diego woman says she intends to use that option to have her doctor help her diaper our state becomes the fifth state in the nation to allow aid and dying options to terminally ill patients but the idea still controversial. Some people have religious objections, some concerns about four patients being chorused to end their lives. And some doctors want nothing to do with helping their patients that -- Kenny Goldberg has produced a series of reports on California's aid and dying law and he joins us now. Hello. Also joining us is a doctor Shiloh, a general practitioner with son health and medical clinic and she is featured in the report. Welcome to the program. Thank you. My pleasure. You introduce us to the San Diego woman who wants to have the option of ending her life using this law to end her life. Who is she? She is a woman that the doctor can describe better than I can, but she used to be evidently incredibly athletic and terribly sick if that is the right description. And she was a real go-getter and when I met her, she was living in a wheelchair, starting to lose her ability to feel things with her hands. She has ALS, Lou Gehrig's disease, and she is going downhill very fast but she was willing to talk to us and to the doctor was willing to let us sit down -- sitting on one of the medical appointments and that is how this got started. Tell us about your patient. What is her name? And as Kenny mentioned, she is used to be very strong. She used to be my strongest female patient. And now she is my weakest patient. She has -- she is suffering from ALS, which is a lateral sclerosis. Tell us about that disease. What is it and what does it do? It affects the motor neurons, so it causes a chronic progressive weakness and it is known as Lou Gehrig's disease, and Stephen Hawking has it. He is now -- he is an outlier who has lived 53 years with the disease. But generally, the prognosis is only 2 to 5 years and it is incurable. And it is terminal. Yes. Erika, is 53 years old at this point? Yes. Did she bring up the idea of ending her life? Yes. A couple of months ago she was in for a routine follow-up visit and at that time the California legislation had passed a bill awaiting Governor -- approval and she asked me if I would be willing to aid her in dying and I agreed to it. In Kenny's feature report, Erica talks about why she wants to choose the time of her death. I think that it is just humane. We held our animals out when they suffer. Why don't we allow the same? For ourselves? And I know that they worried about the abuse but the way that this is written is like you have to say it's. Personally, you have to say that this is what you want, that you totally understand it. And remind us of the rest of the criteria that has to be met under the guidance of this end of life option law. The person has to have a terminal disease resulting in death within six months and the person has to be at least age 18, so this make a wish is for adults only. You have to be a resident of California, and they have to have the cop -- capacity to make medical decisions. This has to be voluntary and not coerced. There has to be two oral request 15 days apart and one written request in the presence of two witnesses to the attending physician. There also has to be consulting physician who confirms the diagnosis and prognosis. Kenny Goldberg, tell us about the concerns that people, including doctors, have voiced about visit end of life option. Well, it requires a different way of thinking. It requires really a culture change in medicine and I think we are starting to see that and, indeed, I think that that is why the California medical Association change their longtime opposition to this aid and dying law to a neutral position and they took that earlier this summer. A lot of doctors have not been comfortable with the idea of eating the death of one of their patients because they consider that to be the antithesis of what medicine is, so they consider that to be a violation of the Hippocratic oath. A lot of people have religious concerns about it, members of the public for example. They do not feel that they should take it into their own hands to end their own life and that it would be a violation of some religious principles. So there are a number of different people that have different opinions on it. This issue of abuse, I heard this a lot during the debate up until the vote in California. The idea that, perhaps, people might feel pressured to end their lives, to save their family the grief, the expense of going to expensive medical treatments and so forth. I know that other states have implemented this kind of a law. Has any of that abuse cropped up in the experience of other states? Not that I have been able to find. I researched the experience in the state of Oregon quite a lot and they were the first state to pass it years ago and there is no signs of people being chorused to end their own life. The California law as the doctor was sent, you have to testify that you are not being coerced into doing it. They cannot pull 70 in off of the street and force them to take a lethal -- of medication. It does not happen like that so this abuse that some people were warning about -- we have seen no evidence of it in other states that have such a law. Apparently in other states many more people have requested prescriptions to help them die that actually have used them so does this does show that having the choice is important to terminally ill people? Yes. I think that that is what the expense has shown us is that it is a matter of trying to maintain some control at the end of their life and it is also does it gives us a sense of security that they do have a way out if things get completely out of hand, out of control, and as you said, more people have requested it that actually have taken it and even with that, under consideration, very few people have taken advantage of it at all. Doctor, you have spoken with other doctors and healthcare workers about this law which allows doctors to help their patients to die. What kind of reactions have you heard? Well, there has been a lot more skepticism and reluctance that I had anticipated. I think that for the most part, people are happy with having this option. My favorite conversation was with the medical director of compassionate choices. He portrayed a scene of his typical patient and what would happen. He basically uses Seco Barbara tall which is a barbiturate in the 1970s. It was used often as a sleeping pill. At that time, people drank alcohol with it and had a few too many, maybe a handful or two and they would end up dying. So that is now being used in the aid and dying prescription. And -- and so -- I have also seen that even people, even health workers who sort of disagree with this law, do not feel terribly comfortable with it are saying that it may actually open up the dialogue that doctors have with their patients about death and dying. And the options that they have, palliative care, and end of life option. Do you see that? That conversation happening more often as this law goes into effect? I think so. I think with shows like this giving people more information, they can be more comfortable with the idea. I think that they will see it as an option, a safety net. More of a conversation. You spoke with a doctor who is in charge of high-tech cancer treatments. He has seen patients who are suffering. What did he tell you? He told me that he thought it would be a welcome option for some patients. Who just cannot get any relief from their suffering. What he was pointing out to me -- he is a radiation oncologist at the -- he says we not only treatable with radiation in hopes of getting rid of the cancer but we treat people whose cancer has gone way too far just to try to alleviate their suffering, relieve the pain, relieve a tumor that is on their spinal cord or something like that. He said for a certain number of patients, this gives them another option and that they -- they know that they do not have to deal with the bitter yet if they do not want to. The wife is when either. They have been traveling in the last year or so. Where have they gone? They went all over to the country, to Key West and you name it. They drove up to Vancouver, Alaska and they said the woman's World Cup in Canada and they had a blast they have been checking off their collective bucket list and trying to enjoy themselves. You asked Juanito what she thought about her choice about Eric's choice to end her life. And she said, that she does she agreed with it and we have a clip of her. That is not because I don't want her to be around anymore. It is because I don't want her to have to deal with her body dying and have no ability to do anything about it and choked to death Sunday. There is a bit of confusion, Kenny, about -- I know that Erica is thinking of doing this. Of the ending her life, choosing the end of life option. When the law goes into effect. But there is a bit of confusion about when this law is going to go into effect. What do we know about that? The law will go into effect 90 days after the termination of the legislative special session on health care, which is still technically ongoing, so whenever lawmakers call an end to this, then the clock will start ticking and 90 days after that, the law will go into effect. It will be next year, a question of when. Okay. Doctor, this will be the first patient who you have helped by taking drugs that you have prescribed. Will you be there with her? Yes. I am going to be there with her. The medical director that I spoke with Ed compassionate choices told me that he has done this several times and with what we are going to do, she wants to -- we are going to take this prescription, take 100 capsules, open them up and put them into water or applesauce, liquor or a smoothie or whatever she wants, and you drink it but he quickly within a couple of minutes. People are asleep within five minutes and they are dead within a half an hour. From what I hear, there is no trigonal respirations. It is just like a peaceful falling asleep. And they can be extraordinarily beautiful time. Are you nervous about it? I just know how much she is suffering and that is what I am focusing on. I think that she is going to have a scene there -- there, of whatever she wants, music, candles, whatever. So basically, I am going to be focusing on her dignity and comfort. That is the only thing on my mind. Kenny, what about Erica? Did she tell you that she had any fear of dying? She did, but she said that she preferred to die then to go through the terrible end that ALS could bring her. She said she is more afraid of that than the actual death. And in your report, we have a clip from her saying, it is comforting to have this option. Because I don't have to suffer like a lot of other people have had to. I say now I am done. You know? I have had a great life, been a very fortunate person. But I don't want to do this anymore. It is worse of being alive then it would be not being around anymore. So this three-part report, Kenny, that you have done has been airing on both KPBS FM and KPBS evening addition, and the series continues tonight. And into tomorrow on KPBS radio. KPBS TV evening addition and on the website at KPBS.org. Very insightful. Very important, I think, to watch and I've been speaking with KPBS health reporter Kenny Goldberg and the doctor. Thank you both very much. Thank you.
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.”