A Matter of Choice

Starting June 9, End of Life Option Act will give terminally ill people the decision to end their life on own terms

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Illustration by Celia Fong.
Illustration by Celia Fong.

Kathy Rock swam three miles every week. She spent hours walking her American pitbull, Stella Blue, in Delaveaga Park near her Santa Cruz home. Camping trips in Yosemite were a regular occurrence, where she would sleep next to the Merced River at nightfall. Sprightly beyond her 65 years, Kathy went rockhounding in the day, collecting mineral rocks that caught her eye.

The rocks she collected adorned the surfaces of her well-kept home. Countless medals hung from the ceiling as mementos from her days as one of the top professional dog show handlers in the country. Reminders of nature were everywhere, from the aquarium in her room to the posters of national parks that decorated the walls.

But Kathy’s spirited lifestyle was forced to a halt when she was diagnosed with a rare, aggressive form of bile duct cancer — cholangiocarcinoma ­— in January 2016. Though the typical duration of survival is less than 12 months, Kathy remained characteristically optimistic. But as the disease progressed, conversation inevitably turned toward end-of-life scenarios with her close friends and family.

For people in a similar position to Kathy, end-of-life options are currently limited to palliative care, oriented around pain management. But soon, there will be an alternative.

Starting on June 9, the End of Life Option Act will give terminally ill patients the option to take medication to end their life, giving them the choice to decide where, when and how they will die. Six weeks before she would have been eligible for the end-of-life option, Kathy passed away. The bill is the first of its kind passed in California and raises ethical questions of suffering, mortality and human control.

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Illustration by Owen Thomas.
Illustration by Owen Thomas.

Medically-assisted death has gained positive traction in recent years, helping to pave the way for California’s End of Life Option Act. But the legislation didn’t come easily. In addition to the usual bureaucratic difficulties, authors of the End of Life Option Act had to grapple with the uncomfortable reality of death.

“Our culture now is averse to talking about dying,” said assemblyman Mark Stone (D-Monterey Bay), who co-authored the bill. “It’s uncomfortable for people to even talk about it. To pass a bill like this you have to talk about the fact that people are dying.”

In 1994, Oregon became the first state to legalize medically-assisted death after passing the Death With Dignity Act, after which California’s End of Life Option Act is modeled. Though Oregon’s legislation marked a turning point in the national debate, setting the stage for what end-of-life legislation might look like in the U.S., it took almost 20 years for California to pass a similar law.

Two years before Oregon made national headlines, Californians voted against Proposition 161, the Aid-In-Dying Act. The initiative failed 54 to 46 percent, after a well-funded opposition campaign led by the Catholic Church. Advocates tried five more times to pass similar measures in 1995, 1999, 2005, 2006 and 2007.

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But the debate was galvanized in 2014 when 29-year-old California native Brittany Maynard traveled to Oregon to use its Death with Dignity Act after being diagnosed with terminal brain cancer. She created a YouTube video explaining why she wanted the right to control the way she died. The video has been viewed nearly 12 million times.

Around the time of Maynard’s death, an opinion poll conducted by HealthDay/Harris showed that 74 percent of surveyed Americans supported the right of terminally ill patients to end their lives. Following this, the End of Life Option Act was proposed in a special legislative session called by Gov. Jerry Brown in September 2015. He signed the bill into law a month later, on Oct. 5.

Though medically-assisted death is now legal, it still has vocal opposition from some medical professionals and religious groups, both in California and nationally.

Nearly 28 percent of California’s population is Catholic, one of the most notable religious groups to oppose the bill.

“We don’t see hastening someone’s death as the right way to deal with someone who’s in pain — we should treat the pain,” said Deacon Warren Hoy, director for the Diocese of Monterey’s Family Life and Social Justice ministries.

Two groups, the Catholic Conference and the Alliance of Catholic Health Care, have spent nearly $200,000 combined per fiscal quarter on lobbying in California since 2013. Opposing bills concerning medically-assisted death was high on their lists of priorities.

“It’s a basic tenet of Catholic faith [that] we respect all life from beginning to end,” said Hoy, who also oversees Santa Cruz parishes. “The dignity of life is the key to a moral society. When we start recognizing exceptions to that, then it becomes a slippery slope.”

Despite the Catholic Church’s official opposition, support for end-of-life legislation among California Catholics still polls at 55 percent, only 10 percent below the general statewide level of support.

Valerie Corral, co-founder of the Wo/Men’s Alliance for Medical Marijuana (WAMM), which provides chronically and terminally ill patients with medicinal marijuana, has had many conversations with WAMM members who are close to death. Kathy Rock was a WAMM member, who used medicinal marijuana to manage her pain.

“There are people for whom suffering is so great inside their bodies,” Corral said. “It’s not that life is not precious, it’s that the suffering is so great that it overpowers every piece of their existence.”

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While religious groups provide the bulk of opposition to end-of-life legislature, some medical professionals also find the ethical consequences of physician-assisted death troubling.

The American Medical Association (AMA) is the largest association of physicians in the U.S. For them, physician-assisted death is “fundamentally incompatible with the physician’s role as healer,” saying procedures “would be difficult or impossible to control, and would pose serious societal risks,” according to the AMA.

However, defining a physician’s duty can be problematic. Dawson Schultz, a medical ethics consultant and former lecturer at UC Santa Cruz, became interested in end-of-life issues after his wife developed a brain tumor while he was in graduate school.

“The goals of medicine have not simply been to save lives but to also provide patients with a reasonable standard of care,” Schultz said. “If you think about it, providing a reasonable standard of care certainly can include assisting the patient in ending his or her life, as well as saving it.”

The AMA’s official position stands against physician-assisted death. But a national 2014 poll, conducted by Medscape, found 54 percent of doctors supported the practice.

Even with a rising level of medical support, California legislators were careful to consult doctors in writing the End of Life Option Act. To pass the bill, policymakers only needed support from the California Medical Association (CMA), which has over 41,000 members. And even then they didn’t need full support, just neutrality — in other words, non-opposition.

“We did this process in such a way that we got the doctors to be neutral,” Assemblyman Mark Stone said. “That was one of the biggest steps that allowed it to be passed.”

Ensuring neutrality meant removing doctors from the active process of death, which resulted in a number of protections for physicians. These include giving individual health care providers the option to opt out of prescribing lethal medications and legally requiring it to be self-administered.

Removing physicians from the act of administering the medication was an essential detail. But, critics say, the absence of a medical professional at the time of death raises the potential for coercion, a criticism leveled at physician-assisted dying since its inception.

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As Kathy Rock’s cancer progressed, she was admitted to Santa Cruz Hospice care. Nurses would visit her home on a regular basis, helping manage her pain, giving emotional support and assisting her around her apartment when needed. Between her son Erich, the hospice nurses and close friends, Kathy had a support system. But not all terminally ill patients are so fortunate.

In 2010, Medicare’s total spending on hospice care was $13 billion, with an average cost of approximately $10,700 per patient. This doesn’t include the cost of medication, which can amount to hundreds of dollars per month.

The costs add up quickly. And often it’s family members, not the patient receiving the care, who are left to pay the bills. Some opponents to the End of Life Option Act argue that if an individual believes recovery for a family member is nowhere in sight, these high costs may be an incentive to coerce the patient into seeking end-of-life options, putting an end to the expenses.

The two end-of-life medications commonly used are Nembutal and Seconal, which cost about $1,000 and $3,000, respectively — a relative drop in the bucket compared to the cost of months of hospice care. In Oregon, Medicare does not cover these medications. There is no guarantee that California’s MediCal will cover them either, but some might still consider end-of-life options a cheaper alternative to hospice care.

“Anyone who is on the margins is always going to be more vulnerable,” Deacon Warren Hoy said. “It’s easier to convince them that this is the only way to go because they don’t know what options are available. It’s easier to pressure them because they don’t feel they have the power within our society to speak up or argue.”

But the bill leaves little room for coercion. It requires that patients have a prior psychological examination and be deemed “capable of making medical decisions,” by their attending physician. The patient must also be able to ingest the medication on their own — a doctor or other person who administers the lethal medication may face criminal charges. These requirements are similar to those in Oregon’s Death with Dignity Act.

“These safeguards to make sure there’s no abuse were really well thought out,” said Mike Milward, CEO of Santa Cruz Hospice, which provides palliative care for people with a life expectancy of six months or less. “Some of these concerns about abuse are a bit sensationalist.”

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With all these protections in place, some opposition groups are still convinced the California act could allow for abuse. But since Oregon’s law went into effect in 1997, reviews have found no evidence of coercion.

“We know from other states, like in Oregon, it doesn’t happen,” Milward said. “We have a lot of history of this law. We just know that these fears haven’t come to pass in the states where this has been the law for a while now.”

The similarity in language between California and Oregon’s laws suggests that the possibility of abuse should be similar between the two states, but California and Oregon are vastly different. Oregon has a population of 4 million while California has a population of 40 million, and it cannot be assumed that what happened in one state will happen in the other.

The potential for coercion certainly exists, but many predict that given the number of people it will affect, the probability for abuse remains low. Out of 34,160 people who died in Oregon in 2014, only 105 used the Death with Dignity Act. Of those 105, 95.2 percent were white, 47.6 percent held at least a bachelor’s degree and the median age of death was 72 years.

“We have to realize the End of Life Option Act only speaks to a very small percentage of the population,” Milward said. “What I’m hoping is it raises interest in the whole area of how we care for older, seriously ill and dying people.”

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Midway through reporting this story, Kathy Rock passed away in a Santa Cruz hospital in the company of her son Erich and close friends. Erich was reading his mother Facebook comments of condolences just after midnight on April 27 when she took her last breath. For Kathy and her family, the End of Life Option Act came too late.

In her final weeks, Kathy and Erich discussed what they would do in the event her cancer became intolerable. They discussed worst-case scenarios of ending Kathy’s life at home or even driving up to Oregon to use the Death with Dignity Act. These kinds of conversations aren’t unique to Kathy’s situation, either. Cases of assisted death, by either family or physician, have occurred in states where it is both legal and illegal.

“People already do it, it doesn’t matter if the law says whether you can do it or not,” said Valerie Corral, co-founder of the Wo/Men’s Alliance for Medical Marijuana. “What are you going to do, chase someone past the portal of death and go get them? You can’t.”

Proponents hope the new law will stop scenarios like the kind Kathy and her family discussed or what Brittany Maynard had to do. Rather, they hope it will provide a safe and legal manner in which terminally ill patients can pass away peacefully.

“I believe we all should have the right to choose, on all levels,” Erich said. “Whether we want different treatments, whether we decide to have life support, whether we decide to have our last days in the hospital or at home, or we decide to end our lives early — it should be a choice for the individual and the family.”