2017-02-16
Story

Melissa Brenkert of Littleton wants other families to be spared the agony hers went through when a beloved sister died a shockingly painful death.

Photos by Joe Mahoney

By Michael Booth

With so many challenges in finding equitable ways for Coloradans to live, it should come as no surprise there are troubling challenges in finding equitable ways to die.

Deep questions of how Colorado values individual lives and freedoms, and how to assure fairness in the most daunting of medical situations, were not solved when voters in November overwhelmingly passed Proposition 106 to legalize “end-of-life options.” Two-thirds of voters agreed that a person within six months of death should have the choice of taking a prescribed set of drugs to end their life.

In just the first few weeks of the law’s existence, though, large swaths of potentially interested Colorado residents have seen that choice essentially taken off the table, in terms of access, coverage or both.

State Medicaid officials say federal law prohibits them from spending blended federal and state money for aid in dying, blocking more than a million clients who likely can’t afford a life-ending prescription out of pocket. Medicare funds are also blocked by the federal law. Colorado’s two largest faith-based hospital systems, Centura Health and SCL Health, say they are opting out of participating, and HealthONE, the largest for-profit chain, has said the same.

Denver Health, the safety net for the city and a growing provider to the middle class, is opting out for now—“differences between state and federal laws have prompted key questions,” a spokesperson said in a Jan. 30 media release—though it does hope to opt in by this summer.

Those cutoffs are forcing proponents of aid-in-dying options to redouble their efforts educating patients and providers of their rights, and to seek help for those who feel blocked medically or financially from using the new law.

“It’s a huge equity issue. What we’re hearing from consumers and patients is a great sense of frustration,” said Matt Whitaker, director of national implementation for Compassion & Choices, which has fought for aid-in-dying laws in Colorado and other states.

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Melissa Brenkert holds a photo of her sister.

Melissa Brenkert holds a photo of her sister.

Melissa Brenkert of Littleton does not want to see more Colorado families go through the agony hers went through in Texas, when a beloved sister died a shockingly painful death from aggressive cancer.

Brenkert’s sister, 35-year-old Leslie Ann Hollis, was tormented by body-wracking seizures at the end of her life that rendered even the strongest of pain medications virtually useless. Texas, like most states, had no aid-in-dying option in 2014. Brenkert speaks and writes of those last days with her sister as scenes from a horror film.

Coloradans need to better understand their new rights, Brenkert said, as well as potential hurdles to access and coverage.

“I believe both education to providers and residents is imperative right now, or the law has no point,” she said. “I’m imagining being faced with the knowledge of a passing like that and then being informed that financially this is denied to you. That would be gut-wrenching.”

Conversations with disability and equity activists and ethicists, as well as proponents of the new law, underline how far from settled these complex ethical issues remain:

  • Dozens of Colorado hospitals are part of systems that have indicated they are opting out of the law—including nearly all Denver metro-area acute care hospitals. How will patients of those systems access the new option? And how will patients seek help in rural Colorado, where their only nearby hospital or hospice may have opted out?
  • Will private health insurance companies cover a $400-$3,000 life-ending prescription, but drag their feet in covering life-extending or life-enhancing treatments and adaptations that cost into the hundreds of thousands of dollars?
  • Can those in favor of assisted dying find ways to extend the option beyond well-insured families experienced in navigating the health system?
  • A 1997 federal act prohibits federal money from being used to assist aid-in-dying activities in any way. How will patients in Medicaid, Medicare, Veterans Affairs facilities, safety net clinics and other federally funded systems be able to access the Colorado aid-in-dying law if all public funding is barred?

Even trained ethicists find themselves disagreeing with one side of Proposition 106 and agreeing with another, then quickly flipping and acknowledging the questions raised by the opposition are indeed troubling.

Matthew Wynia, MD, director of the Center for Bioethics and Humanities at the University of Colorado School of Medicine, said he is open-minded to ongoing protests from disability groups—they fear coercion or abandonment by insurance companies looking to save money on long-term costs.

“You have to respect that,” Wynia said. Those in the health care system know of plenty such examples, he added. Still, many physicians (and, clearly, most Coloradans) agree that the current system does not adequately serve many terminal patients and their families.

“The question is, does a group [opposing the aid-in-dying law] deserve to dictate the options for everyone else, including those who disagree with them? I’m sympathetic to their point of view, but it does bump into the fact we are a democracy,” Wynia said.

“When a solid majority says they want this option available to them, it’s got to be an extraordinary thing for a minority to say, ‘we won’t let you have it because of our long-term concerns about where it might lead.’ There are a lot of checks and balances in our country that try to parse things like that out.”

Those who worked for years to pass an aid-in-dying law—including years of failed efforts to pass one through the state legislature—say they recognize the equity issues and are rededicating themselves to solving them. One of the primary proponents, Compassion & Choices, wants to expand a Colorado effort to educate both patients and providers on how to access and use the law.

Compassion & Choices did a survey three years ago in Oregon and Washington, said Kat West, national director of policy and programs for the organization. They asked “how accessible the law was to everyone, including minorities and low-income families.

“We found that the law was only partially accessible for everyone; the more low-income you were, the less accessible it was,” West said.

Oregon state statistics on its aid-in-dying law show, for example, 91 percent of those using aid-in-dying were enrolled in hospice care—while national estimates show only about 45 percent of dying patients overall enrolled in hospice, often because of cost barriers.

“So we set about changing that. That was obviously not intended by the voters or lawmakers. We launched access campaigns where we have a presence; the goal is to make sure everyone has meaningful access to the law if they choose to use it,” West said.

The first “prong” of the campaign in Colorado will be educating consumers through a campaign visiting senior centers, health fairs, colleges and libraries, West said. A promoted website will link to fact sheets, explanatory videos and tips on how to talk to physicians and hospice. Another campaign provides technical assistance to physicians and facilities. Twenty Colorado physicians have been trained on the law and how it relates to practice, according to Compassion & Choices, and Colorado physicians can consult privately to learn more.

West agrees that the ban on federal money for aid-in-dying is a big hurdle for many of the patients her group wants to reach. Oregon and California have worked to segregate state Medicaid funds from federal matching so public patients can receive aid, and activists will push Colorado to follow their example. Such a move would likely require legislative approval.

West’s group and others are also trying to address another barrier Colorado patients may face in trying to take advantage of the law: drug costs. Activists across the country have criticized a sharp price increase in the brand drug Seconal, a secobarbital sleeping pill that is lethal in high doses and favored as most gentle by many physicians. Last year, the retail price doubled to $3,000 at many pharmacies, after Valeant Pharmaceuticals acquired it as more states considered legalizing the aid-in-dying method.

Physicians in other states have identified different, effective drug combinations that can be found for $300 to $600, advocates of the law say. Cory Carroll, MD, a northern Colorado physician and former leader of the Northern Colorado Medical Society, is an advocate for the law and is confident pharmacies can be found that will dispense the proper drugs for a reasonable price.

“I look at this as the ongoing dilemma of so many health costs. It’s an absolute unknown,” Carroll said. The medical community needs to carefully walk alongside patients through the process, he added: “I won’t be writing the scrip and saying, ‘good luck.’”

“I’m hoping in the next several weeks we’ll have ferreted some [processes] out,” he added. “We’re not going down a road untraveled—other states have experimented with this.”

Carroll is adamant that Colorado patients need a new dying option, for themselves and for their families’ sake. He said he has had at least one patient commit suicide with a gun after being refused a medical option, and that many Colorado physicians grow frustrated in their careers when palliative care is all they can offer.

“[Patients] say, ‘Doc, I’ve had a good life, I’m tired, my wife’s dead, and I don’t want all my money to go into the health care system, I want it to go to my children.’ It’s not my decision. It gives the patient an option. I emphasize the ‘option’ in the title of the law,” Carroll said.

Advocates of the law also cite the relative stability of statistics in aid-in-dying reporting from other states. While they hope for more economic and racial diversity among patients who learn of and qualify for the option, they say there is no indication that such laws lead to a sharp increase in deaths or a “slippery slope” of dubious coercion cases.

Oregon’s official state reporting, for example, shows that 218 people received a prescription from 106 physicians for aid-in-dying drugs in 2015, and 132 deaths were reported. Annual growth in prescriptions had been about 12 percent, but has risen to 24 percent in the last two years. Ninety-three percent of the prescription recipients were white, and 43 percent had a college degree, both higher than the overall state population. (Oregon’s population is about 1.3 million lower than Colorado’s, and 79 percent white, compared to 70 percent in Colorado.)

Those pushing for equity in the new Colorado law are watching how insurance companies and hospital systems—many of which increasingly employ their own physicians—will react to the aid-in-dying law. Major insurers in other states have agreed to cover the prescriptions and physician encounters required, and most observers believe they will in Colorado as well. Kaiser Permanente, UnitedHealthcare and Anthem, the three dominant Colorado insurers, were still working on policies at the time of this writing and were reluctant to comment. Kaiser Permanente, though, noted it has covered the drugs in other states where it operates, and is holding internal meetings in Colorado to work out details.

Centura Health, overseeing both Catholic and Adventist hospitals such as St. Anthony, and SCL Health have both said their facilities will not participate in end-of-life actions or prescriptions.

In a statement, SCL Health said its caregivers “will continue to provide other requested end-of-life and palliative care services to patients and families, and they may discuss the range of available treatment options to ensure patients are making informed decisions with respect to their care. Any of our patients wishing to request medical aid-in-dying medication will be offered an opportunity to transfer to another facility of the patient’s choice.”

Denver Health’s Chief of Palliative Medicine, Daniel Handel, MD, said the debates over aid-in-dying measures sometimes overshadow the more widespread need for effective and humane palliative treatment for all those facing terminal illnesses. He said he takes it as a hopeful sign that a third of Oregon patients who received an end-of-life prescription did not use the drug, likely meaning their exploration of the topic brought them to more effective pain treatment or caring hospice treatment.

“We need to make sure that whatever issues happen under this law, we look at outcomes and make sure we are giving really good care to patients, and exercise this only after doing all the other things we can to address and improve suffering,” Handel said. “And if there are options for future care to extend life and improve quality of life, we need to address that before we offer this.”

Denver Health must be particularly careful reacting to the law, Handel noted, because of the absolute ban on using federal money. Denver’s hospital and federally qualified clinics run on a much higher proportion of Medicare and Medicaid support than other health systems, and jeopardizing any of that funding would itself be an equity issue.

Proponents will have a harder time convincing minority and lower-income Coloradans that aid-in-dying is an attractive option in the current system of palliative care, CU’s Wynia noted. He said that many minority groups have a justifiable wariness of the health care system that goes beyond education efforts on a new procedure. They’ve seen a history of inhumane experiments like the Tuskegee Study, which targeted poor black men with syphilis; the U.S. government told them they’d get free health care, but in reality was studying the effects of untreated syphilis.

Ethicists have asked minority focus-groups if they know of the vile experiment, and most do, Wynia said. Moreover, nearly all in a room raise their hands when asked if an elderly family member has ever warned them to be wary of physicians and scientists, he said. Those suspicions deepen when they learn of epidemiology studies, for example, showing African-American women with breast cancer die at higher rates than white women.

“People who are afraid that the health system is not looking out for their best interests are even less interested in having an advance directive that might limit their care,” Wynia said. “Mistrust in the health care system is a much more diffuse problem, much harder to figure out than a technical solution such as altering insurance coverage.”

Meanwhile, organized opponents like Rita Marker of Ohio will continue to raise questions even as they fight a losing battle against the fast-spreading state laws.

Marker is an attorney and leader of the Patients Rights Council, advocating for better palliative care and disability rights instead of more aid-in-dying laws. She said she knows of patients who woke up in a hospital with a “Do Not Resuscitate” bracelet on their arm that they never authorized. Hospice workers and physicians mention the assisted-suicide drugs in suggestive ways to vulnerable patients, Marker charged. As an elder rights attorney, she says she has adjudicated many cases of family coercion from caregivers stressed by overwork or looking for inheritance.

Marker’s alternative?

“Let your family members know you love them and will take care of them. And I know it’s hard; you’re caring for them, it’s tiring and expensive,” she said. “But reach out to people who do not have family members, let them know they are special. And if they are in pain, find a new doctor who can control that pain—don’t just look for a doctor who can prescribe a deadly overdose of drugs.”

Brenkert, who watched and felt helpless as her sister went through sheer agony at the end of her life, also advocates for families taking more control and demanding an end to needless suffering. But she is adamant that sometimes pain control and love are not nearly enough—and that the new aid-in-dying laws are a crucial addition.

“We ultimately have the right to determine what happens with our own bodies as we go through this last chapter of our lives,” Brenkert said. “It’s a right that shouldn’t be taken away by your doctors, by pharmacy companies, by your government. It should be a personal decision. It’s your body, your right.”

Michael Booth
Writer
Denver, Colorado