By Michael Booth
Herb Myers is a reluctant but determined messenger that families need more help navigating Colorado’s aid-in-dying law.
Myers’s family was among the first to publicly discuss employing the law and using an aid-in-dying prescription just over a year ago. Kathy Myers, with her husband Herb and daughter at bedside, swallowed her chosen flavor of Gatorade mixed with powder from 100 secobarbital capsules.
Kathy Myers passed away peacefully and almost immediately, in the way many Colorado voters must have imagined in the fall of 2016 when they overwhelmingly approved a state statute sanctioning medical aid-in-dying.
But getting Kathy to her chosen ending involved months of bewilderment and frustration for Herb. Finding a physician willing to oversee the dying process as required in the law, another to second the diagnosis, and a way to pay for the prescription, was like trying to play a game with the highest of stakes where all the rules were secret.
A year later, Herb Myers continues to upend his family’s habit of quiet living by speaking out. (In the winter of 2017, the Myers family finally found physicians willing to assist Kathy after taking their story to media outlets.) He is an advocate for more training of physicians and pharmacists, more providers and hospices willing to become stewards of the law, and more open conversations among everyone involved with a terminal patient.
“The biggest problem was nobody knew anything,” Myers said. “Until I went on TV, I got nothing. I’d like to see it easier than it was for Kathy. Anytime I can give our experience with it, I will.”
The state of Colorado, by design of the law, only keeps limited records about use of aid-in-dying procedures. But the information state officials did release in early 2018 is a warning signal to ethics researchers and law proponents that much work remains in bringing equity to this new branch of Colorado health care.
In 2017, the first year of the law, 69 Coloradans received prescriptions for aid-in-dying medications. Fifty of those filled the prescription, but the state does not track whether those pills were ever taken. Fifty-six deaths were recorded among those 69, but the state has no way of knowing whether those were from using the prescription or dying of a different cause. Thirty-seven different doctors wrote the prescriptions, and 19 different pharmacies participated.
The numbers that most concern equity advocates: 96.4 percent of those receiving the prescription were white, non-Hispanic residents; and nearly 88 percent were residents of Denver or other urban Front Range counties. Moreover, 93 percent of those who received the prescription and had their deaths recorded were in hospice care at the time, potentially indicating a higher level of insurance coverage and health care system knowledge.
“If you are in favor of this [law] and learned that 96 percent of those who avail themselves of it are white, and most are from Denver, and in Denver 25 to 30 percent of the population is Hispanic or African American or Native American, obviously there are enormous swaths of our community who are not using this. Why is that?” said Matthew Wynia, MD, director of the Center for Bioethics and Humanities and a professor of medicine at University of Colorado Anschutz Medical Campus.
Wynia, who does not espouse a position on the law itself, argues that health care providers in Colorado and other states with aid-in-dying laws largely stood by as voters and state regulators moved forward, and that needs to change. Providers have a responsibility to learn whether patients can’t find a willing doctor, can’t afford the prescription, or if they are so geographically or culturally isolated they don’t know where to turn, he said.
Wynia and colleagues made the argument in Health Affairs in November that providers should band together nationally to monitor how the aid-in-dying laws are being used.
The racial and geographic disparities evident in Colorado’s 2017 statistics “are quite stark,” Wynia said, “and there are probably other disparities we don’t know anything about, because those questions are just not being asked.”
There’s some research showing that African Americans and other people of color are less likely than whites to seek hospice care, and more likely to request more aggressive end-of-life care, due to a mix of cultural and socio-economic factors.
Yet cultural differences among racial or ethnic groups are rarely the causes of health care gaps, said Angela Sauaia, MD, PhD, professor of public health, medicine and surgery at the University of Colorado Anschutz Medical Campus, who has studied disparities in cancer screening rates among Latinas and other equity topics. Nearly all stark health care inequities can be explained by differences in health insurance coverage, inexperience in navigating the health system, and language barriers, Sauaia said.
“These are not cultural values completely ingrained that you can’t change,” Sauaia said. Equity gaps begin to disappear when populations of color receive access to health coverage, providers, navigators and translators, she added.
“Everything is very fixable,” Sauaia said. “We just need the will—and some money, I won’t lie about that.”
The Colorado End-of-Life Options Act requires the following for aid-in-dying protocol:
One of the most vocal proponents of the law, the Denver-based nonprofit Compassion & Choices, acknowledges the statistical inequities from Colorado’s first year. But the group is carrying out a statewide education campaign, and is pleased that Colorado joined a national patients’ rights movement that Wynia noted now covers 1 in 5 Americans.
“We don’t look at this as a switch that can be flipped, and suddenly everybody knows everything about the law and how to access it,” said Sam DeWitt, Colorado public outreach manager for Compassion & Choices. “When we set out, this was a multi-year effort, so that work continues.”
“We were very heartened by the first-year results,” DeWitt added, citing the fact that 37 physicians participated early on.
DeWitt said there has been good news for proponents from secular hospital and hospice systems, most recently from Valley View Hospital in Glenwood Springs and Aspen Valley Hospital saying they would sanction aid-in-dying at their facilities. The Compassion & Choices count now holds that all secular medical facilities across Colorado have opted in, for a total of 91 locations.
Catholic facilities, which make up about 30 percent of hospital providers statewide, continue to opt out, as allowed by law. They cannot block their physicians from assisting patients, but they can block their hospital facilities and pharmacies from doing so.
Centura Health, the largest hospital provider in the state and a joint venture between Catholic Health Initiatives and Adventist Health System, said it is continuing its policy from last year: “Patients will continue to receive informed consent in our hospitals and from our providers. If a patient requests aid-in-dying medication, members of the patients’ care team may assist the patient in transferring to a non-Centura Health facility.”
Other provider systems opted in after taking the early months of 2017 to formulate policies and procedures with their boards and professionals. Kaiser Permanente (KP) Colorado acknowledges the speedy implementation of the law caught many off guard—after voters passed Proposition 106 in November of 2016, the law took effect immediately upon Gov. John Hickenlooper’s signature on Dec. 16 of that same year.
KP was “essentially scrambling,” said James Willett, MD, a palliative care physician and medical director of KP Colorado Ethics. The Colorado system “leaned on” other KP regions that had already complied with similar laws; California, for example, had six months to prepare, Willett said: “We had a functioning program by late February. It was ambitious.”
No KP provider or pharmacist is obligated to participate, Willett said, but the “KP approach is to make sure patients have a place to go.” One way KP identifies willing doctors is to look beyond traditional specialties such as palliative care or oncology. Physicians in other specialties can participate if they are interested. “Regional champions” are identified who are willing to educate colleagues about the law and Kaiser’s role.
KP officials said some of their Colorado patients had exercised their rights under the aid-in-dying law in the past year, but would not give any more details. What they have learned, Willett said, is that “only a fraction” of patients who first ask about the aid proceed to having a formal meeting about it, and only a fraction of those seek a prescription.
KP’s internal rules mean they cannot advertise or promote the service in any way, not even with an informational pamphlet in a waiting area. Providers can’t bring it up first; they must wait to be asked.
Cost of the prescription has proven a barrier to some patients as well—secobarbital pills can cost $3,000, while a different prescription based on morphine is about $500. Federal regulations bar coverage of this cost by Medicare or Medicaid.
Kaiser wouldn’t specify how it covers the prescription cost for non-Medicare patients, but Willett said, “Kaiser Permanente recognizes there have been perceived barriers to access, and we’re actively trying to make it available to all eligible members who desire this option.”
Other major insurers in Colorado declined to comment directly on the law, referring questions to the trade group Colorado Association of Health Plans. In a statement, the association said its members were complying with the law and making prescription coverage available, but would not offer specifics. The association did not say if or how provider visits associated with the aid-in-dying law are covered by member insurers.
Despite the small percentage of patients who move forward through the process, Willett said, the law created an opening for patients and providers to discuss all forms of quality end-of-life care, “and that’s been something nice to see.” KP uses the opportunity to explain more about palliative and hospice care options, he said.
Wynia, for one, thinks providers don’t fully understand patient motivations, and that they should know more. While he’s not calling for more state reporting requirements, he is working with the Colorado Medical Society and others on a non-governmental effort to gather more information about patients.
“If you look at whether doctors are good at guessing what drives their patients’ decisions, we aren’t that great at it,” Wynia said. “There’s a great need to gather information directly from patients and families about what drives them to use this law.”
One motivator Wynia worries about is financial. He has read or heard about some elderly patients saying they don’t want a drawn-out hospital death that will waste a lot of money they could give to their children.
“On the other hand, I really dislike the idea of people deciding to use this law because they are afraid of going bankrupt. That’s an indictment of our whole health care system,” Wynia said. He would also like this separate data-gathering effort to explore the geographic and racial gaps in use of Colorado’s law, and how difficult it has been for patients to find a first or second physician and a pharmacy.
“We’re not tracking any of these things in Colorado, and most of the other states are not tracking this, either,” Wynia said. “This is where the profession really needs to step up.”
Herb Myers is grateful, a year after his wife’s death, for the physicians who finally did step up after he took his search onto the airwaves last year. He believes that hospices could also play a key role in connecting patients to information and services. He has given talks at hospice ethics committees and other forums, trying to encourage openness.
“Nobody knows these situations like the hospices do—they know the patient, the doctors, the mental state of everyone,” Myers said.
Kathy Myers’s passing came after a long battle with lung disease, one result of a lifetime smoking habit she couldn’t quit, no matter how hard she tried. She and Herb had talked for months and months about the aid-in-dying ballot proposal, and as soon as it passed in November 2016, she started making plans for when she would seek the prescription.
In practice, the law creates an odd combination of regulation and do-it-yourself homework. On the day Kathy decided to end her own suffering, Herb spent more than an hour breaking open secobarbital capsules in his workshop and collecting a pile of powder to put in her Gatorade.
Herb was worried Kathy would suffer, or have a drawn-out death, as in some accounts. But she lay back on her pillow, and within minutes her grip on Herb’s hand was loosening. There were no signs of distress, and within 15 minutes her hands were growing cold, Myers said.
Myers was speaking just a few days before the one-year anniversary of Kathy’s passing. He planned to take the day off work, and the family was planning a weekend get-together with a balloon release and food from Kathy’s favorite restaurant.
At Myers’ talks in public, people have asked him if he has regrets, or second thoughts about Kathy’s decision.
“I don’t think you’re going to come away from it unscathed,” Myers said. “There are plenty of times I felt like I killed my wife, but those days are pretty well passed.
“You’re going to have some feelings about this, so be prepared for it and make sure you have the mental stability to get through it. And, hopefully, a lot of family support.”
Related story: Is There Such a Thing as Equity in Dying?