On Thursday, California became the fourth US state to implement a law allowing assisted suicide for the terminally ill, what has come to be known as aid in dying. Lawmakers approved the legislation last year, after Brittany Maynard, a 29-year-old schoolteacher who had brain cancer, received international attention for her decision to move to Oregon, where terminally ill patients have been allowed to take drugs to die since 1997.
Oregon was the first US state to pass an assisted suicide law and was followed by Washington and Vermont. Under a Montana court ruling, doctors cannot be prosecuted for helping terminally ill patients die, as long as the patient makes a written request. With the California law, 16 percent of the country’s population has a legal option for terminally ill patients to determine the moment of their death, up from 4 percent.
In US states with assisted suicide laws, the number of people who request and take medication to hasten dying has steadily increased. In Oregon, for example, 16 people ended their lives under the law in 1998, and by last year, that number had grown to 132.
Illustration: Yusha
The California legislation is strict, intended to ensure that patients have thought through the decision and are making it voluntarily. Patients must make multiple requests for the medication and have a prognosis of less than six months to live.
Many hospitals have not yet released policies for dealing with the law. No doctor, health system or pharmacy will be required to comply with a patient’s request. Doctors who object to the practice are not even required to refer patients who request the medication to another physician.
Roman Catholic and other religious health systems have said they would not participate.
“We are crossing a line — from being a society that cares for those who are aging and sick to a society that kills those whose suffering we can no longer tolerate,” Jose Gomez, the Catholic archbishop of Los Angeles, said in a statement on Wednesday.
Here is how two patients and two doctors are preparing for the new order.
Kristy Allan, 63, lives in Placerville, California, where her small bungalow overlooks the lush foothills of the Sierra Nevada. With her athletic frame, she does not look like someone ready to die, but she has been under hospice care since the start of the year, having already undergone four rounds of chemotherapy since learning she had stage 4 colon cancer in 2009.
She has already talked to her doctors about her desire to get the medication that will allow her to die when she chooses, and she plans to make her request formal this week. She does not know with certainty when, or even if, she would take it, but she knows what would make her ready to do so.
“I don’t want to become a burden to my family,” Allan said. “I don’t want my husband to take care of certain hygienic needs. That’s my nonnegotiable thing. It’s a huge relief knowing it is legal. To have to take it, to go to the point where you know you are ending your life, that’s hard, but I know that I could do it when it comes to that point.”
Allan has already defied some predictions. When her 30-year-old daughter got engaged last spring, she wondered whether she would make it to the wedding. However, she did, designing and sewing her mother-of-the-bride dress herself and baking desserts for the reception.
Allan has spoken to her husband and her two adult children about the decision.
“They’ve always been in support of me. They’ve never asked, ‘Are you sure?’ or challenged me,” she said.
“Last year they said there was a new drug available that would maybe give me another six months, but it would mean lab work once a week and a low white blood cell count. Every time you start a new chemo drug, it’s really scary because you don’t know how you’re going to feel. I don’t know how sick I’m going to feel, how little energy I’ll have. I just said: ‘Enough.’ If there were really further curative measures, I would not be declining it, thank you very much, I would say: ‘Give them to me,’ but there aren’t any. I wasn’t going to put myself through six months of that. I knew I had six months in me. The fact is there are no curative measures. All along I was told I was not going to come out of this alive. With hospice, there are really no more tests to be done, no more treatment. It’s a relief,” she said.
Wolf Breiman, 88, who learned he had multiple myeloma seven years ago, does not know what will push him to the edge to ask for the medication, but Breiman, who lives in Ventura, California, relishes the idea of having the right to choose precisely when and where to die.
“Whatever gives you a sense of control over your destiny is empowering.” Breiman said. “I feel assured that in the circumstances ... I’d be able to determine what to do. It just absolutely makes sense, it’s such a basic right to me. I don’t see how you can take the [US] Constitution seriously and not agree that it’s consistent with the rest of the liberties we have.”
Sunita Puri, a palliative medicine specialist at Keck Medicine of the University of Southern California, is writing the hospital’s policy on the new law. To prepare, she asked her colleagues what they would do if their patients sought help in dying. While more than 60 percent of those she surveyed said they supported the legislation in theory, half of the doctors who responded told her they would not prescribe the medication themselves.
“My sense of talking to colleagues is they simply don’t know enough about what the medication will be, and part of it is not knowing if it is resulting in a comfortable experience that leads to their death,” Puri said. “They take very seriously the obligation to support patients and not do something harmful. The other reason is that people feel very uncomfortable about what this act means for the changing role of physicians in society, what would be right for patients and what would be appropriate for them to do.”
Some healthcare systems will make a psychiatric evaluation a prerequisite for receiving the drugs. Puri has heard from many doctors who worry that they are not fully prepared to determine whether a patient is able to make the request to die, not suffering from depression, or in the kind of pain that palliative and hospice care could alleviate.
“These are not going to be simple and easy conversations,” she said. “Everyone wants what would be right for patients. The stakes are very high obviously. We assess for capacity every day, but this is new territory. There’s a difference between questions about it and wanting to pursue it, and that is going to require quite a bit of conversation, of back and forth between oncologists and palliative care doctors and the patients.”
In Berkeley, California, Lonny Shavelson bristles each time he hears a doctor talk about discomfort with prescribing end-of-life medication.
A former emergency room physician, Shavelson has just begun his own practice dedicated to providing care for those seeking to end their lives. Here is how he imagines talking to reluctant doctors.
“What I’ve said to them is: ‘Were you comfortable the first time you did chest surgery? Were you comfortable the first time you drew blood?’ I don’t understand when being uncomfortable became a reason not to do something in medicine. We make uncomfortable decisions all the time,” Shavelson said. “When somebody says: ‘I am ready to end dialysis and let myself die,’ that’s a momentous decision and it might make us uncomfortable. The best answer I can get is that it is a difference of mechanics, but we’re agreeing that they are ready to die. It’s that the mechanism seems fairly irrelevant.”
Shavelson, who will charge patients US$200 for an initial consultation and US$1,800 if they move forward, said the most important response he would have for any patient who approached him was simple: Why? He believes the approach should not be different from any other aspect of medicine.
“We always listen to the patient,” he said. “We never tell a patient: ‘This is what you have to do. You have no choice.’ Yet, at the moment when their life is ending — when they say: ‘I don’t want to live in this bed for the next three weeks waiting to die’ — it’s an odd change in the consent procedure. Suddenly they become wrong and we become right. That does not make sense to me. Dying should not be completely separate from everything else we do in medicine.”
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