If Elizabeth Wallner's life was reduced to a statistic, it might be one of these. She's among the 30 percent of US adults who serve as a primary caregiver (for her parents); she's one of the nearly 12 million single parents in the United States (raising her son); and she's included in the 10 percent of the U.S. population that is self-employed (she's an education consultant).
And, she's among the one in 20 Americans who is diagnosed with colorectal cancer during their lifetimes.
But if there is one statistic that probably matters most to Wallner, it is that she's among the 10 percent of stage IV colon cancer patients still alive more than five years after being diagnosed with widely spread (metastatic) cancer. When Wallner was diagnosed in 2010, at the age of 47, she was given 18 months to live.
But she doesn't see herself as a statistic, or even a cancer survivor. "The cancer is still there, so I guess I'm a cancer patient," she says by phone from her Sacramento home. "And that 18-month prognosis came from statistics and that was wrong. Actually, wrong and scary."
Wallner has endured 18 rounds of chemotherapy and five surgeries. Her cancer came back earlier this year and she had half her left lung and half her liver removed. Doctors don't offer Wallner life expectancy statistics anymore because they simply don't know. All she knows is that another five years — like five days, five weeks, or five months — would be more a meaningful gift than an arbitrary number.
"I definitely want to live and I love my life," she says. "But I will choose quality of life over quantity of life. And I believe in autonomy in medical decisions at the core of my being. I don't need to eke out my last few days if it terrorizes me, my son, my parents or my siblings."
In part, it's this conviction regarding autonomy (which she calls a "privileged expectation") — along with the uncertainty of life with cancer — that led Wallner to become a spokesperson for Compassion & Choices. The Colorado-based nonprofit is dedicated to "dying in comfort, dignity, and control" and is considered to be one of the country's most influential advocacy groups supporting physician-assisted death for the terminally ill. It played a significant role in encouraging California to become the fifth, and by far the largest, state to allow physicians to prescribe lethal medications to terminally ill patients.
But like Oregon's 18-year-old Death with Dignity Act, California's End of Life Option Act — which became law June 9, 2016 — is proving to be just as controversial among those who work with the terminally ill as it was among the general public.
And in rural counties like Humboldt, it may turn out to be hardly an option at all.
The Brittany Maynard Effect
"My husband was a physician who died of a brainstem stroke in 1987," says Patty Berg, who represented the North Coast in the state Assembly from 2002 to 2008. "And he would have begged me to end his life had he survived the stroke. I knew it."
During her years in the Legislature, Berg tried and failed three times to pass medically-assisted suicide legislation.
"It's all about the money," she says when asked about what thwarted her efforts. "It was the threat of the California Medical Association and medical associations in other states, the Catholic Church, and some groups in the disability community. Those three."
Then, this past year, for the first time, the California Medical Association adopted a neutral stance, becoming the first medical association in the country to do so. Many, including Berg, a cancer survivor herself, attribute this change of heart to Brittany Maynard, the 29-year-old terminal cancer patient who drew worldwide social media support in advocating for her own right to die. She exercised that right by moving to Oregon and ending her life on Nov. 1, 2014. By sheer coincidence, that was the same day local physician Michael Fratkin started crowd-funding for what would become Resolution Care, a Eureka-based palliative care clinic dedicated solely to "bringing capable and compassionate care for everyone, everywhere, as life approaches completion."
"I appreciate what the California End of Life Option Act means and signifies for our society," Fratkin says. "We are waking up and we are turning our attention to the hardest and most difficult issue human beings face: their own mortality."
But Fratkin — like nearly all the physicians interviewed by the Journal on the subject — stops short of unequivocally stating he would sign such a fatal prescription. He feels medically-assisted suicide will only be used by a very small number of people, a number he says won't even come close to what he estimates are the nearly 400,000 Californians who qualify for palliative care.
In Oregon, an average of 55 Death with Dignity patients each year follow through and ingest their fatal prescriptions. With California being roughly 10 times more populated than Oregon, we could expect hundreds — not thousands — to follow suit. However, this rough comparison does not take into account the demographics of just what kind of patients avail themselves of physician-assisted death (see sidebar).
It also does not take into account the convictions of local physicians.
Jennifer Heidmann is a geriatrician who agrees with Fratkin that palliative care is where the emphasis belongs. But unlike most physicians contacted for this story, Heidmann is unequivocal in her views regarding the End of Life Option Act.
"That's a line I've never chosen to cross. And I'm just worried about the slippery slope of using my trusted position to push someone faster toward the end of their life," says Heidmann, who works with some of the frailest and most at-risk elderly in Humboldt County.
"The main thing for me is the vulnerability of the people I care for. And the concern that expediting death is not tending to people who may be suffering in a way that feels safe for someone who has taken the oath that I took."
How it Works
For people to qualify for the End of Life Option Act, they must be a California resident over the age of 18, with a terminal illness and two doctors who agree they most likely have less than six months to live. The first doctor is identified as the "attending physician," or "the physician who has primary responsibility for the health care of the individual and treatment of the individual's terminal disease." It is implied, but not explicit, that the second consulting physician be independent from the first, and qualified to comment on both the diagnosis and prognosis of a patient's specific terminal illness.
Patients cannot have impaired judgment and must be both mentally and physically capable of self-administering the fatal prescription at the time they choose to die. The decision must be voluntary, with no evidence of coercion, and cannot be relegated to a surrogate, attorney-in-fact, conservator or even preemptively in an advanced directive. Those with chronic pain, Alzheimer's disease, or psychiatric illness who are not terminally ill do not qualify.
Patients must make two verbal requests to their primary doctor, at least 15 days apart, as well as a written request witnessed by two people; one of these witnesses cannot be a relative or in line to benefit financially from the death in any way.
The physician and patient are required to discuss alternatives to the fatal prescription — things like pain control, hospice and palliative care — and either can withdraw at any time. In fact, participation in the program is completely voluntary for all health care providers, institutions and pharmacists.
If all the steps are followed properly, and clearly documented, the death will not be considered a suicide. This means the doctor will not be subject to any legal or professional sanctions and the patient's health and life insurance policies will not be affected.
There is no particular medication designated as the fatal prescription of choice. Based on the Oregon, Vermont, Washington and Montana experiences, it is typically a barbiturate like Secobarbital or Pentobarbital. Usually, it is a powder mixed with a sweet drink to mask the bitter taste. These drugs act within the brain to suppress both breathing and heart pumping, causing most patients to fall asleep within 10 to 20 minutes and die within one to three hours.
The law does not allow anyone to end a patient's life by lethal injection, so-called "mercy killing" or euthanasia. These remain illegal in California.
Major healthcare institutions that do allow the End of Life Option include: Kaiser Permanente, Sutter Health, University of California San Francisco and Medi-Cal (with state funds only).
Institutions that do not allow the End of Life Option include: the Veterans Health Care Administration, California Department of Corrections, Adventist Health, the federally-funded portions of Medi-Cal and, most importantly in Humboldt, Catholic-affiliated healthcare systems.
Medical Decisions by Bishops, Not Doctors
Catholic hospitals have long enjoyed a much deserved reputation for tending to the needy and offering quality health care. Along with this, a recent report by the American Civil Liberties Union and MergerWatch, found the number of Catholic-affiliated hospitals nationwide has grown by 22 percent since 2001. Currently, four of the 10 largest healthcare systems in the country — which combine to control one out of every six hospital beds — are run by Catholics. But in Humboldt County, nearly two-thirds of the hospital beds — and about a third of doctors, for that matter — are associated with the Catholic St. Joseph Health System. This directly affects healthcare decisions, most notably at the beginning and end of life.
"St. Joes will opt out (of the End of Life Option Act) because it's been the way we've practiced in the almost 100 years since we've been established," says Bill Parks, chief medical officer for St. Joseph Health in Humboldt County.
The St. Joseph Health System has prohibited its staff and contractors from participating in the End of Life Option Act while on the system's "time or premises."
But some wonder whether declining to participate in the End of Life Option Act gives a single religious group disproportionate influence in limiting healthcare options, in this case how the terminally ill choose to die.
"I don't see it as an option that's going to be limited," says Parks. "I think there will be those physicians who are going to believe that everybody has that right ... and they do ... and if they can make the medical case for it in their conscience, then they probably will participate. I don't anticipate a shortage."
But others think getting the requisite two doctors to sign off on a patient's end of life request won't be easy, especially in rural areas up and down the West Coast that have a dominant Catholic healthcare presence.
"I think it is going to be extraordinarily difficult for patients in Humboldt," says Beth Abels, who has been an internist in Humboldt County for 26 years.
"First of all, a lot of patients in Humboldt have no physician," she says. "Either they have no provider or a midlevel provider, and they (midlevel providers like physician assistants or nurse practitioners) are apparently not able to sign off on this. Secondly, the physicians who most commonly deal with these end of life dilemmas are the oncologists, and St. Joes owns the oncologists."
In fact, all of the cancer specialists in the county contract with St. Joseph. However, most of the 78 primary care doctors in Humboldt County (excluding general practitioners and internists that are hospitalists at St. Joseph) work with the Open Door Health System, which does not prohibit its doctors from participating in physician-assisted death.
Like most of the doctors contacted for this story, Abels thinks few of her primary care colleagues will actually be willing to write life-ending prescriptions.
"I think a lot of doctors in general have an ethical dilemma with it," she says. "We are taught to heal. We're upholding the Hippocratic Oath. And I think a lot of people, whether for religious reasons or professional reasons, are going to have a hard time writing a prescription to end someone's life."
And then there is the other end of life. Catholic hospitals typically refuse to offer abortions, fertility assistance or even sterilization procedures like a tubal ligation. As with the decision to not participate in physician-assisted death, these exclusions are based on religious doctrine; specifically, the 72 rules set forth by the U.S. Conference of Catholic Bishops. These rules are called the ERD, or "Ethical and Religious Directives for Catholic Healthcare Services." For example, Directive 48, which can endanger mothers because it considers aborting an ectopic pregnancy not "morally licit." Medical professionals and evidence-based science are not cited in the document. Quotes from the Bible are. This, despite the fact that Catholic hospitals nationwide receive billions of dollars in public funding.
The Matter of Words and Words that Matter
It's probably not surprising that proponents prefer these word choices: "physician-assisted dying," "death with dignity," "choice," and "self-determination," to name a few. Opponents have favored "suicide" and "euthanasia." But what may be surprising is the opposition of one group and how it animates this emotionally charged debate.
Not Dead Yet is a grassroots disability advocacy group based in Rochester, New York, that alleges assisted suicide is a "deadly form of discrimination" against the disabled. At protests, group members often hold signs that read "Give me Liberty. Don't Give me Death." The reasons given for their opposition are carefully considered, wide-ranging and easily overlooked (see sidebar).
Diane Coleman, president and CEO of the 20-year-old group, has lived in a motorized wheelchair since the age of 11 with neuromuscular disease and describes advocates for assisted suicide to be the "white, well-off, worried, well."
What concerns Coleman is a slippery slope suggested by Oregon's Death with Dignity data that indicates those who participated in the program (largely white, college-educated, insured septuagenarians with cancer) mostly gave three reasons for following through: loss of ability to engage in previously enjoyable activities (96 percent), loss of autonomy (92 percent) and the loss of dignity (75 percent). She sees these as disability issues.
Columnist Kristen Powers, writing in USA Today, sees them as Orwellian: "Is anyone ashamed that we live in a culture where people believe that if they aren't autonomous or might be a burden on others that they should ingest drugs and die?"
Bob Neely, of McKinleyville, became a quadriplegic six years ago after a log hit him in the head while he was clearing land for his retirement home. He now relies on a voice-controlled wheelchair and his wife, Maria. His 46-year-old son Jeffrey can't really help because he has a genetic disorder and the cognitive abilities of a 2-year-old.
Issues of autonomy, lost abilities and what dignity means are not theoretical to the Neelys.
"I couldn't even commit suicide without someone's help," says Bob Neely, as if realizing this for the first time.
"I've had my dark moments, sure, especially with pain. And if autonomy is going anywhere in the world, to do whatever I want, whenever I want, then I don't have that. But I'm alive. I have resources others don't. And I've got the love of my wife who works morning till night with me and Jeffrey. So I'm happy."
Both Bob and Maria Neely think the End of Life Option should be available to people with disabilities, not just in the case of terminal illness, but also if they feel their quality of life is unacceptable to them.
"No one can possibly put themselves in someone else's shoes, know their pain, or their threshold to withstand it — be it physical or mental," says Maria Neely. "Only that individual should have the right to say about their right to die. It's their life. Their business. Their quality of life."
If death is a certainty, then agreement on how we should die certainly is not. Most of us in this country die in institutions even though most of us say we want to die at home. We usually die older, on more prescriptions, and under the care of more doctors than ever before. Our concept of the "natural death" may have transmogrified from a realistic expectation, through a tired cliché, and now on to misnomer. Although it may be true that many of us are afraid of death, it might be more accurate to say we're afraid of how we'll die.
"Until it becomes personal, it's just theoretical," muses Elizabeth Wallner, the Sacramento colon cancer patient. "So for people like me with a terminal illness, it's important to open up and talk about how I came to this decision with my family.
"This topic is so cloistered in America. It's become so medicalized and so separate that we're not connected to death anymore, and I think that has polarized us."
The End of Life Option Act is actually more of a trial run. Unlike Oregon's Death with Dignity, which is permanent, the End of Life Option Act will be reviewed in 10 years, at which time voters will decide whether they want the option — and the conversation — to continue.
By then, Humboldt County should have a much better idea of whether the End of Life Option Act is really much of an option at all, or yet another example of a specialized medical service that can only be found beyond the Redwood Curtain.
Michael Joyce is a freelance journalist living in Northern California.
End of Life Option Act Who Can Use It and How?
California resident > Age 18
Two doctors agreeing the illness is terminal and the patient has < 6 months to live.
The patient is mentally competent to make own health care decisions (if this is questionable, a psychiatric evaluation is required).
If the above criteria is met
Patient must make two verbal requests to an MD at least 15 days apart.
Patient must make one written request witnessed by two adults.
Physician who prescribes the fatal prescription has to inform the patient of feasible alternatives, inform them they can opt out at any time and do his or her best to make sure the patient is not being coerced in any way.
Patient must be able to ingest fatal prescription on his or own.
No other person (healthcare professional, conservator, or attorney-in-fact) may make the request for an aid-in-dying medication.
Participation in the program is voluntary for hospitals, doctors and pharmacists.
Source: California Assembly Bill 15; leginfo.legislature.ca.gov
Summary of Arguments Against Medically-Assisted Suicide
It advocates suicide as solution.
Takes emphasis away from palliative care.
Could neglect diagnosing and treating depression as an important step.
Fatal prescriptions can be both botched and abused.
Diagnosis of "terminal" is inexact.
Impending death (and disability) are vulnerable/stressful situations that are not conducive to making good decisions.
May disproportionately attract the poor and marginalized who can not afford — or don't have access to — more appropriate or costly options.
"Quality of Life" and "dignity" for the disabled are misunderstood and underrated by the able bodied.
In a profit-driven healthcare system, will this option become favored over more expensive options?
Source: Not Dead Yet
The Oregon Death with Dignity Experience
Legalized late 1997; data from 1998-2015
Since legalization, 1,545 fatal prescriptions have been written (an average of 85 per year), with 991 documented deaths from fatal prescription (55 per year), so approximately two-thirds of prescriptions have led to death.
In 2015, of the 218 fatal prescriptions written, 125 (57 percent) followed through and were ingested. All patients died from the prescription. Fifty patients did not ingest and died of other causes and 43 outcomes were unknown.
Approximately three in four patients are over the age of 65 and are cancer patients.
Most common non-cancer diagnosis was Amyotrophic lateral sclerosis ("Lou Gehrig's Disease").
Over 90 percent of patients are Caucasian and in hospice.
Forty-three percent have at least a college degree.
Most live in urban areas, died at home and had some form of health insurance.
Physicians were usually not present at death.
The most common type of fatal prescription was a barbiturate, usually Secobarbital or Pentobarbital.
The three most commonly mentioned end-of-life concerns were:
Loss of ability to participate in previously enjoyed activities (96 percent)
Loss of autonomy (92 percent)
Loss of dignity (75 percent)
Source: 2015 Data Summary; healthoregon.org/dwd