In 2008, nearly 58 percent of Whatcom County voters approved I-1000, the exact same margin by which the Death with Dignity initiative passed statewide. Yet two years later, terminally ill patients in Whatcom and other counties served solely by Catholic hospices, are still being denied access to information about their lawful, end of life options.
This growing conflict between the rights and wishes of patients, and the ethical and moral directives of our state's expansive, Catholic run health systems was illustrated recently by the slow, painful death of Norman Shapiro, a patient in the care of Whatcom Hospice, a program of Bellingham's PeaceHealth St. Joseph Medical Center, and the only home hospice provider in the county. It was only after Shapiro died from esophageal cancer in April, that his wife, Audrey Roll-Shapiro learned that our state's Death with Dignity law would have allowed him to hasten his agonizing death by obtaining a lethal dose of medication.
Outraged, the Bellingham resident sent a letter to Whatcom Hospice — the agency had come to their home in March to care for Norman Shapiro in his final days — asking why information about the law, called Death With Dignity, was not mentioned to them.
"The efforts of the very attentive, loving hospice staff did not alter his extreme discomfort and pain as he died. It simply went on too long," she wrote in her April 29 letter to Richard Hammond, manager of Whatcom Hospice. "Why were we never made aware that we/he had a choice of a more mercifully quickened ending? ... He was unquestionably in pain, severe discomfort, ready to leave, fighting to leave."
The law permits health care providers to opt-out of participation based on ethical, moral and religious grounds, but PeaceHealth and other Catholic health care systems have adopted a rather broad interpretation of what participation means. Few argue that doctors should be required to write a lethal prescription, or that pharmacists should be required to fill one, but PeaceHealth forbids its doctors, nurses, counselors, social workers and chaplains from talking about the option with patients, even if directly asked.
In response to Roll-Shapiro's complaint, PeaceHealth recently added the following single paragraph to its admissions packet:
Patients wishing more information on Washington Death with Dignity Act, Initiative 1000, codified as RCW 70.245 should contact their individual physician, the Whatcom County Medical Society (360-676-7630, www.whatcom-medical.org), the Washington State Department of Health (www.doh.wa.gov/dwda), or the Washington State Hospital Association (www.wsha.org). In accordance with the opt-out provision of the law, PeaceHealth St. Joseph Medical Center does not participate in the Washington Death with Dignity Act.
And by "not participate" they mean not participate beyond including that single paragraph, which doesn't actually explain what the Death with Dignity Act is, and doesn't even include a referral to Compassion and Choices, the only organization in the state to compile a list of doctors and pharmacies willing to participate in the law, and the only organization whose purpose is to advise patients on how to exercise their rights. Terminally ill patients seeking a say in their own death routinely find their path filled with obstacles, and would never manage to obtain their prescription without outside help.
When patients do ask a Whatcom Hospice care provider for more information on Death with Dignity, they are simply advised to talk to their doctor. And if the doctor is affiliated with PeaceHealth St. Joseph Medical Center — as many physicians in the area are, it being Bellingham's only hospital — they too are barred from discussing the option.
“Our belief is that life is sacred and that intentionally ending one’s life is not something that we would support. It’s being consistent with Catholic teaching,” Ross Fewing, director of ethics at PeaceHealth told the Bellingham Herald. When asked why PeaceHealth refuses to refer to Compassion and Choices, Fewing emphasized that "under Catholic moral theology, it would be direct participation in the act.”
Get that...? Answering a patient's question truthfully would be equivalent to participating in the act, and thus a violation of Catholic moral theology. Huh. Perhaps there's some subtlety in the New Testament I just don't get, but I was always led to believe that honesty is supposed to be a Christian virtue.
Rob Miller of Compassion and Choices agrees, if in a snark-free manner. "Patients have a right to information," Miller told me, "and all medical providers should honor the principle of informed consent by answering questions honestly, and providing referrals when necessary." Miller isn't advocating the elimination of the opt-out provision, but when pushed on what might be a reasonable legislative remedy, he suggested something on the lines of a "Right to Know" law that would at least require health care providers to give direct answers to direct questions.
Barring that, access to information about end of life options could become even less available over time. Just like in Whatcom County, home hospice services throughout much of the state are available through a single provider, and many of these are run by Catholic health care systems... systems that have been expanding in recent years through mergers and affiliations that are subjecting more and more medical providers to Catholic Ethical and Religious Directives.
These Catholic hospitals and health care systems deserve praise for delivering high-quality care throughout much of the state, but with their expansion comes a constriction in access to legal medical services including birth control, abortion and yes, aid in dying, especially in the growing number of areas like Bellingham where these systems hold a health care monopoly. Indeed, should you find yourself terminally injured or ill in a Catholic hospital emergency room, your own personal medical directives, including Do Not Resuscitate instructions, will be ignored, if they are found to conflict with church teachings.
It's a troubling issue few patients talk or even know about... especially when under the medical care of one of our state's many Catholic run health care systems.