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A New Sort Of Consultant: Advising Doctors, Patients On California’s Aid-In-Dying Law

Lonny Shavelson is consulting with doctors who have questions about California's "End of Life Option Act." He will also see patients after the law takes effect next week. (PhotoWords.com)

BERKELEY, Calif. 鈥 Few people have the unusual set of professional experiences that Dr. Lonny Shavelson does. He worked as an emergency room physician in Berkeley for years 鈥 while also working as a journalist. He has written several books and takes hauntingly beautiful photographs.

Now, just as California鈥檚 law aid-in-dying law takes effect this week, Shavelson has added another specialty: A consultant to physicians and terminally ill patients who have questions about how it works.

鈥淐an I just sit back and watch?鈥 Shavelson asked 聽from his cottage office. 鈥淭his is really an amazing opportunity to be part of establishing policy and initiating something in medicine. This is a major change 鈥 [that] very, very few people know anything about and how to do it.鈥

Shavelson is the author of the 1995 book, 鈥,鈥 which followed five terminally ill people over two years as they determined whether to amass drugs on their own and end their lives at a time of their choosing. He was present at the death of all of them.

He followed the issue closely for several years, but ultimately moved on to other projects 鈥斅燼mong them聽a book about addiction and a about people who identify as neither male nor female.

The wall of Lonny Shavelson鈥檚 office, lined with covers of the books he has written. (Lisa Aliferis/KQED)

The wall of Lonny Shavelson鈥檚 office, lined with covers of the books he has written. (Lisa Aliferis/KQED)

Then last fall came the 聽giving terminally ill adults with six months to live the right to request lethal medication to end their lives. The law takes effect Thursday.

Shavelson decided he had to act, adding that he feels 鈥渜uite guilty鈥 about having been away from the issue while others pushed it forward.

His website, went up in April, and he鈥檚 outlined the law at 鈥済rand rounds鈥 at several Bay Area hospitals this spring. His practice will be focused on consulting not only with physicians whose patients request aid-in-dying, but also with patients themselves. As he indicates on his site, he will offer care to patients who choose him as their 鈥渁ttending End-of-Life physician.鈥

Shavelson is adamant that this is 鈥渟omething that has to be done right.鈥 To him, that means starting every patient encounter with a one-word question: 鈥淲hy?鈥

鈥淚n fact, it鈥檚 the only initial approach that I think is acceptable. If somebody calls me and says, 鈥業 want to take the medication, my first question is ,鈥橶hy? Let me talk to you about all the various alternatives and all the ways that we can think about this.'”

Shavelson worries that patients may seek aid-in-dying because they are in pain. So first, he would like all his patients to be enrolled in hospice care.

鈥淭his can only work when you鈥檙e sure that the patients have been given the best end-of-life care, which to me is most guaranteed by being a part of hospice or at least having a good palliative care physician. Then this is a rational decision. If you鈥檙e doing it otherwise, it鈥檚 because of lack of good care.鈥

California is the fifth state to legalize aid-in-dying, joining Oregon, Washington, Vermont and Montana. The option is very rarely used. For example, in , 聽just 155 lethal prescriptions were written under the state鈥檚 law, and 105 people ultimately took the medicine and died.

Under the California law, two doctors must agree that a patient has six months or less to live. The patient must be mentally competent. At least one of the meetings between the patient and his or her doctor must be private, with no one else present, to ensure the patient is acting independently.

Patients must be able to swallow the medication themselves and聽must affirm in writing, within the 48 hours before taking the medication, that they will do so.

Shavelson says he has been surprised by the poor understanding of the law among some health care providers. One insisted the law was not taking effect this year; another asked how the law would benefit his patients with Alzheimer鈥檚 disease. (Patients with dementia don’t qualify under the law because they are not mentally competent.)

The law does not require that health care providers participate in ending terminally ill patients’ lives. Many physicians are 鈥渜ueasy鈥 about the law, Shavelson said, and are unwilling to prescribe to patients who request the lethal medication 鈥斅爀ven when they think having such a law in place is the right thing to do.

鈥淢y response to that is as health care providers, you might have been uncomfortable the first time you drew blood. You might have been uncomfortable the first time you took out somebody鈥檚 gall bladder,鈥 he said. 鈥淚f it鈥檚 a medical procedure you believe in and you believe it鈥檚 the patient鈥檚 right, then it鈥檚 your obligation to learn how to do it 鈥 and do it correctly.鈥

Shavelson predicts that many physicians who are initially reluctant to provide this option to their patients may become more comfortable after the law goes into effect and they see how it works.

Renee Sahm, one of five terminally ill people followed by Lonny Shavelson in his 1995 book 鈥淎 Chosen Death.鈥 (Courtesy of Lonny Shavelson)

Renee Sahm, one of five terminally ill people followed by Lonny Shavelson in his 1995 book 鈥淎 Chosen Death.鈥 (Courtesy of Lonny Shavelson)

Burt Presberg, an East Bay psychiatrist who works with cancer patients and their families, attended a talk by Shavelson, and it led to some soul searching.

He wrestles with his own comfort level in handling patient requests. When he talks, he often pivots from his initial point to “on the other hand.”

Presberg says he is concerned that patients suffer from clinical depression at the end of life. Sometimes they feel they are a burden to family members who could 鈥渞eally push for the end of life to happen a little sooner than the patient themselves.鈥

His experience is that terminally ill patients with clinical depression can be successfully treated.聽He said he believes Shavelson will be aware of the need to treat depression,鈥漛ut I do have concerns about other physicians.鈥

鈥淥n the other hand,” he added, “I think it鈥檚 really good that this is an option.鈥

Shavelson says he鈥檚 already received a handful of calls from patients, but mostly he鈥檚 spent his time before the law takes effect talking to other physicians. He needs a consulting physician and a pharmacist who will accept prescriptions for a lethal dose of medicine.

Then his mind returns to the patient. 鈥淚t鈥檚 important 鈥 that we鈥檙e moving forward,鈥 he said. 鈥淚t鈥檚 crucial that we do that because this is part of the rights of patient care to have a certain level of autonomy in how they die.鈥

To him, this type of care 鈥渋sn鈥檛 so tangibly different鈥 from other kinds of questions doctors address.

鈥淚鈥檓 just聽one of those docs who sees dying as a process, and [the] method of death is less important than making sure it鈥檚 a good death.鈥

This story is part of a partnership that includes , NPR and Kaiser Health News.

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