(The Nation, By Katherine Stewart, October 8, 2015)
Americans have started thinking seriously about how to die.
This past Monday, October 5, California became the fifth state to allow doctors to prescribe life-ending drugs to patients with terminal illnesses, joining Washington State, Oregon, Vermont, and Montana. In an unusually confessional signing message, Governor Jerry Brown explained his decision to sign the legislation, writing: “I do not know what I would do if I were dying in prolonged and excruciating pain. I am certain, however, that it would be a comfort to be able to consider the options afforded by this bill.”
The passage of the End of Life Option Act capped a tumultuous process that began more than 20 years ago, when Californians roundly rejected an aid-in-dying ballot initiative (the first of several efforts), and accelerated only recently alongside shifting currents in the broader culture. New books such as Atul Gawande’s Being Mortal have been raising vital questions about personal agency, the culture of modern healthcare, and the end of life. Award-winning documentaries like How To Die in Oregon have drawn attention to the real-life responses to death-with-dignity legislation. And recent cases like that of Brittany Maynard, the 29-year-old with a brain tumor who chose to move to a state where aid in dying is legal, have fascinated the media. Maynard famously relocated from California to Oregon so that she could die a more peaceful, dignified death than the one fated by her cancer.
Ann Neumann, author of the forthcoming The Good Death: An Exploration of Dying in America, attributes the new openness to discussions about death and dying to a mix of demographic, cultural and even medical shifts. Americans are living longer, she told The Nation, but many of those extra years are proving to be a series of long, slow and disabling medical problems. “Independent, control-focused baby boomers are taking care of their elderly parents and beginning to worry about what will happen in their own end years,” she said.
But the new openness to end-of-life care is running up against one of the complexities of America’s healthcare system. Catholic hospitals supply an indispensable and growing share of the country’s healthcare services. These hospitals now make up 10 of the 25 largest healthcare networks in the United States and, in some places and for some people, they are the only realistic option. But Catholic hospitals don’t do “death with dignity.”
Catholic hospitals have long taken the position that they will not provide medical services that contradict Catholic religious principles. More than that, they will frequently not permit their doctors and other providers—many of whom are not Catholic—to perform such services. For decades, they have exercised this right in the area of reproductive health, where they refuse to provide many services, mostly to women, which are perfectly legal. Last week, the ACLU filed a suit against a Catholic hospital system, Trinity Health Corporation, charging it with failing to provide women with pregnancy complications with emergency abortions as required by federal law.
As with the beginning of life, so it will be with the end of life. In the aftermath of Oregon’s Death with Dignity law, which went into effect in 1997, it has become clear that Catholic hospitals will deny aid in dying to patients even in those states where such services have been legalized.
In 2014, a patient in a hospice in Washington State made repeated requests for assistance in ending his life. His condition, brain cancer, was terminal and had the potential to become excruciatingly painful. But his physician and the other medical professionals charged with his care declined to provide him with information about aid in dying or referrals to other places that might be able to help him. Eventually, he decided to solve the situation on his own. He climbed into a bathtub and shot himself with a gun.
As a resident of Washington, which had passed a Death With Dignity Act six years earlier, the patient was legally entitled to receive the information and assistance he desperately wanted. He had a right to seek medical help to end his life. His mistake, however, was to have found himself in a hospice that is affiliated with Providence Health & Services, a large Catholic healthcare network. The medical professionals in this patient’s case appear to have believed that they would be fired if they offered him referrals.
We know of this case only because a hospice nurse found the incident so upsetting that the nurse filed a complaint with Washington’s Department of Health. The health department found no evidence of medical wrongdoing. The tragedy, however, does provide evidence of the kind of suffering that results from the complexity of an American healthcare system in which the religious orientation of large healthcare corporations may have more influence over the care of individuals than the laws passed by their duly elected representatives.
In the case of Catholic hospitals, the religious principles guiding hospital administrators are codified in a document called the Ethical and Religious Directives for Catholic Health Care Services (ERD). The ERD has been around in some form since at least 1921, with the United States Conference of Catholic Bishops publishing the first uniform ERD in 1948; it has since been updated every few years, most recently in 2009. The ERD provides “authoritative guidance on certain moral issues that face Catholic healthcare today.”
Although local bishops have a certain amount of leeway in how the ERD is interpreted, most of them believe that the ERD rules out aid in dying. Indeed, directive number 60 is blunt on the matter: “Catholic healthcare institutions may never condone or participate in euthanasia or assisted suicide in any way.” Dying patients who request aid in hastening the event “should receive loving care, psychological and spiritual support, and appropriate remedies for pain and other symptoms so that they can live with dignity until the time of natural death.” Directive number 61 adds: “Patients experiencing suffering that cannot be alleviated should be helped to appreciate the Christian understanding of redemptive suffering.”
Some medical professionals at Catholic institutions do point to “workarounds,” in which they are able to refer patients to other organizations or individuals that provide such services. Others, who are part of institutions whose boards enforce a stricter interpretation of the directives, say they are not even allowed to do that much.
Those patients who are aware of their medical options are of course “free” to seek other healthcare providers, just as doctors are presumably able to find jobs at non-Catholic institutions. But the growing—and in some places dominant—position of Catholic hospitals in the US healthcare system leaves many patients and doctors with few realistic options. According to a 2013 report by MergerWatch, between 2001 and 2011, at a time when other types of nonprofit hospitals have been disappearing, the number of Catholic-sponsored hospitals grew by 16 percent; only for-profit hospitals have fared better. Catholic hospitals now account for 1 in 9 hospital beds around the country, with much higher concentrations in some states, including Washington State, where they account for nearly one of every two hospital beds.
Dr. Stephen Kerner, who practices family medicine in Florence, Oregon, and has served for eight years as medical director at a Catholic-affiliated hospice care facility, expresses frustration with the restrictions. “I am not able to give my own perspective,” he said. “There is no question that it affects the kind of care I am able to deliver. When my patients inquire about it, I have to say that we don’t participate in it.”
Kerner pointed out that the only hospital in his town is Catholic, so most patients have little choice in the matter. “If patients ask about aid in dying, we can refer them to the Lane County Medical Society or the Washington State Department of Health, and then those organizations may refer those patients to Compassion & Choices,” he said, referring to the nation’s largest aid-in-dying organization. “But we can’t do it directly.”
Death-with-dignity acts allow physicians to prescribe lethal doses of medication, so that patients may self-administer drugs that hasten their end of life. Each patient must meet multiple criteria: He or she must be an adult resident of that state and have been diagnosed with an incurable, irreversible, terminal disease that will lead to death within six months. A second, consulting physician is required to confirm eligibility.
A patient must undergo a psychological evaluation if either the attending or consulting physician suspects the patient’s judgment might be impaired by mental illness. Patients must ask for the medication a total of three times—twice verbally, and once in writing. To ensure terminally ill people aren’t making these decisions in haste, there is a mandatory 15-day waiting period between the first and second verbal requests.
“If your primary-care physician is part of a Catholic organization or network, you might find another physician who can fulfill the requirements,” Kerner said, “but in our region, as with many small towns or rural areas, the only facilities within reach are Catholic.”
For patients in such circumstances, the process of obtaining referrals can be arduous. Struggling with exhaustion, restricted mobility, nausea, overwhelming pain, and other symptoms of terminal illness, many simply give up—or die while trying.
“Remember,” said Dr. Kerner, “these institutions are directly supported by the federal government. How is it that their religious imperatives can take precedence over two physicians in a situation in which a prescription is legally allowed and medically indicated?”
Dr. Frances DeRook, a Washington State cardiologist who recently completed a fellowship in Palliative Medicine at the University of Washington in Seattle, spent a portion of her fellowship year studying aid-in-dying legislation. She and Dr. Kerner presented anabstract on the topic to the American Academy of Hospice and Palliative Medicine in February, raising awareness of the issue in the broader medical community.
“Doctors who work for Catholic healthcare organizations are not allowed to give patients the name of Compassion & Choices as a resource,” she said. “They can refer patients to state or county medical societies, and the idea is that there they have Compassion & Choices listed. It’s a step removed.”
The restrictions, said DeRook, have produced a broad sense of frustration in the medical community. “People who work at PeaceHealth have told me that they are ‘gagged,’” DeRook said, referring to a prominent Catholic health services chain throughout Northwest. “They actually used that term to describe their inability, not only to participate in aid in dying, but to share important information with their patients about their rights.”
Tim Strickland, a spokesperson for PeaceHealth, denied that the organization silences its medical staff or stands in the way of patients looking for information about aid in dying. “Resources are available outside of PeaceHealth for patients who are seeking information about Death With Dignity laws,” he told The Nation. “We treat all patients with compassion and respect, and when asked about ‘death with dignity,’ our physicians provide information about resources through which patients can become more informed.”
Nonetheless, there are reports of doctors facing grave consequences for defying their hospital’s restrictions. Dr. David Grube, medical director of Compassion & Choices, spoke with an Oregon physician who was fired for writing a prescription. “The pharmacist recognized that this doctor worked in a Catholic health system and called the physician’s office,” he says. “A staff member reported this to the office medical director and to a priest who was in the Catholic health-system administration. The priest had the authority to fire the doctor, and he did. And that was it.”
In areas that are dominated by Catholic healthcare systems, medical professionals recognize that it could be difficult or impossible to obtain new jobs in non-Catholic healthcare systems, so the threat of being fired is especially acute.
For DeRook, a commitment to comprehensive palliative care means she is compelled to move to an area with a broader array of medical care facilities. “I’m presently packing up to leave the town where I’ve been living because my professional options here are limited,” she says. “I want to be able to speak freely and openly about death with dignity if my patients ask about it, because it is a valid and legal end-of-life option in this state. So I narrowed my job search to secular hospitals. I’m voting with my feet.”
Many death-with-dignity activists have been motivated by the experience of watching their own loved ones suffer. One of those is Steph Campbell, a 65-year-old retired manager of software quality assurance in Costa Mesa, California, whose mother died in 2007 after a protracted illness.
“When she became sick, she lost her independence and was put on a feeding tube,” Campbell recalls. “Initially she didn’t want to die because she had this theory that she would get off of it and could turn her life around. But once she realized that was not going to happen, she had no interest in surviving. She told me, ‘I want this to be over as soon as possible.’ I absolutely know that if she had had that option, she would have taken it.”
Campbell campaigned actively for California’s End of Life Option Act and says her activism is a way of trying to give elders a right that her mother was not able to access. “When my time comes, I know I certainly don’t want to go through what my mother had to go through,” she says. “For me it’s a lot like abortion. You should have the choice. You don’t have to do it if you don’t want to. But to have some religious person tell you [that] you can’t have that right is not okay.”
Catholic healthcare institutions have been important and indispensable components of America’s medical landscape for centuries. But what’s clear is that the ragged interchange between America’s excessively complex healthcare delivery system and the demands for religious exemptions have produced problematic results that answer not to the will of the people or their elected representatives but to religious authorities.
Dr. David Grube sums it up with a quip that is darkly funny precisely because it captures something of the truth: “There’s a man in Rome who tells his Jewish doctor in Eugene what prescriptions his Buddhist patient can and cannot have.”