End-of-Life Choice, Palliative Care and Counseling

Posts TaggedWashington

Exit Strategy

By Scott McLemee
Inside Higher Ed
July 25, 2012

Of the many strange things in Gulliver’s Travels that make it hard to believe anyone ever considered it a children’s book, the most disturbing must be the Struldbruggs, living in the far eastern kingdom of Luggnagg, not covered by Google Maps at the present time.

Gulliver’s hosts among the Luggnaggian aristocracy tell him that a baby is born among them, every so often, with a red dot on the forehead — the sign that he or she is a Struldbrugg, meaning an immortal. Our narrator is suitably amazed. The Struldbruggs, he thinks, have won the cosmic lottery. Being “born exempt from that universal Calamity of human Nature,” they “have their Minds free and disengaged, without the Weight and Depression of Spirits caused by the continual Apprehension of Death.”

The traveler has no trouble imagining the life he might lead as an immortal, given the chance. First of all, Gulliver tells his audience at dinner, he would spend a couple of hundred years accumulating the largest fortune in the land. He’d also be sure to master all of the arts and sciences, presumably in his spare time. And then, with all of that out of the way, Gulliver could lead the life of a philanthropic sage, dispensing riches and wisdom to generation after generation. (A psychoanalytic writer somewhere uses the expression “fantasies of the empowered self,” which just about covers it.)
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For Palm Springs man, grief and anger over an end-of-life decision

By Steve Lopez
Los Angeles Times
July 21, 2012

On the evening of July 2, Bill Bentinck, 87, was led from his Palm Springs home in handcuffs, in mourning and in shock.

The body of his wife of 25 years, Lynda, was still in the house, but there was no time to grieve. After telling police that his terminally ill wife had chosen to disconnect her oxygen supply and put an end to her suffering from emphysema, he was arrested on suspicion of murder.

Bentinck, a straight-talking man in the Jimmy Stewart mold, felt that he had made a difficult but compassionate choice in honoring his wife’s last wish and not reconnecting the oxygen. But police saw it differently, and Bentinck, a retired entomologist and medical equipment designer, was about to endure a nightmarish three-day ordeal. More

The Evolving State of Physician-Assisted Suicide

By Jaime Joyce
The Atlantic
July 16, 2012

Should terminally ill patients have the right to kill themselves? Voters in Massachusetts will soon decide. Last Wednesday, the Secretary of the Commonwealth announced that on November 6, 2012, when Bay State voters go to the polls to pick the next President, they will also have their say on a ballot measure called the Death with Dignity Act. If passed, the law would make Massachusetts the third state to give adults diagnosed with six months or less to live the option to end their lives using a lethal dose of doctor-prescribed medication.

Last year, volunteers from across the state began a petition drive to collect the 68,911 signatures needed to introduce the act for consideration by the state legislature; by the time they were done, they’d gotten more than 86,000 voters to sign on to show their support. Lawmakers had until the beginning of May to address the issue, but they declined to do so. In response, volunteers fanned out for a second wave of signature gathering. An additional 21,000 people from the state’s 14 counties signed on to support the Act. That’s nearly double the number needed to bypass the statehouse and bring the issue directly to voters via ballot measure.

Oregon and Washington were the first states to enact Death with Dignity laws. (In Montana, the state’s Supreme Court ruled in 2009 that physician-assisted suicide was legal, but Montana has no guidelines in place to regulate and monitor the practice.) Since 1997, when Oregon’s Death with Dignity Act went into effect, more than 900 people have received prescriptions to their end their lives. Not all have used the drugs. The Oregon Public Heath Division reports that more than 600 individuals have taken the dose, while the remainder either decided against using the prescription, or succumbed to their diagnosed illness.

In Oregon and Washington, patients must first make two requests of their doctor for medication, fifteen days apart. The patient then has to make the request in writing. In order to prevent potential abuses, patients are required to sign consent forms in the presence of two witnesses to whom they are not related. Once approved, patients must self-administer the drugs. Typically, it’s a deadly dose of Seconal, a barbiturate often prescribed by doctors to treat insomnia or to calm patients before surgery. The contents of the capsules are stirred into a glass of water or a serving of applesauce, to dull the taste. Statistics compiled and released annually by the Oregon Department of Health show that in the majority of cases, people lose consciousness within five minutes of swallowing the drugs. It can take anywhere between one minute and four days to die, but for most people death comes in just 25 minutes.

Ninety-eight percent of people who have made use of the law in Oregon are white. Eighty-one percent had cancer. Fifty-two percent were men. The median age of those who died using the law was 71. Most patients were enrolled in hospice and privately insured. They cited loss of autonomy, loss of dignity and the fact that they were “less able to engage in activities making life enjoyable” as the top three end-of-life concerns. In Washington State, where a Death with Dignity Act was approved by ballot initiative in 2008, and went into effect the following year, patients fit a similar profile. According to the latest figures released by the state, 135 people have died from the lethal prescription. The Death with Dignity Act that will go before Massachusetts’s voters this fall is modeled after laws in place in Oregon and Washington.

A survey conducted in May by Western New England Polling Institute showed that 60 percent of Massachusetts’s voters supported the rights of terminally ill patients to legally obtain and ingest life-ending drugs. Still, the measure faces tough challenges from powerful factions within and beyond the state. The Massachusetts Medical Society opposes the Act. The American Medical Association does too. “Physician-assisted suicide is fundamentally incompatible with the physician’s role as a healer,” the AMA states in its Code of Medical Ethics. “Patients should not be abandoned once it is determined that cure is impossible.”

Disability-rights activists have also spoken out against physician-assisted suicide. So has the Catholic Church. Noting a resurgence of interest in the topic and a renewed push by advocates of physician-assisted suicide to extend the practice beyond Oregon and Washington, the United States Conference of Catholic Bishops last year issued an impassioned statement against the practice. In Massachusetts, the Roman Catholic Archdiocese of Boston, anticipating the ballot measure, created a website, suicideisalwaysatragedy.org. “Our society will be judged by how we treat those who are ill and infirm,” Archbishop of Boston, Cardinal Sean O’Malley, says in a video address that appears on the site. “They need our care and protection, not lethal drugs.”

But it’s the people of Massachusetts who will ultimately decide the law’s fate, not religious leaders, lawmakers or medical professionals. Dr. Marcia Angell, former editor of Massachusetts Medical Society’s New England Journal of Medicine, and one of the Act’s lead sponsors, puts little stock in what physicians have to say about the matter.

“I am less concerned with what doctors want than with what patients want,” Angell said in an interview that aired on WGBH, in Boston. She continued, “I think doctors sometimes have a too-narrow idea of what their own obligations are. They feel they have an obligation to extend life even when it can’t be extended significantly. And even if you have that situation, then it seems to me they have two obligations. One is to support the autonomy, the self-determination of their patients. And the other is to relieve suffering. If you can’t extend life significantly, then you must relieve suffering.”

A study released by the Health Research and Education Trust shows that Americans are living longer lives than ever before. As a result, more individuals and families will face difficult questions about end-of-life care. In 2011, the oldest Baby Boomers turned 65. By 2030, the number of Boomers between 66 and 84 years old will climb to 61 million, and six out of 10 will be managing chronic health conditions. For the elderly and others facing terminal illness, doctors have numerous ways to prolong life. Palliative and hospice care are available to help patients find peace and comfort in their final days. But there are some people who want another option, which is the right to end suffering by taking their own life at a time and place of their choosing.

Two Movements Approach the Tipping Point

After years of gains and setbacks, the national movement for same-sex marriage is enjoying a period of remarkable success.  Massachusetts and Connecticut became first adopters in 2004 and 2005 and that came after twenty years of advocacy. Turmoil followed, especially in California. But in 2009 three states (Iowa, Vermont, New Hampshire) approved same-sex marriage. New York followed last June, and now the Washington and Maryland legislatures have acted in quick succession.  Delaware’s governor predicts his state is not far behind.

It’s making me think about similarities between the movement for death with dignity and LGBT dignity. Like other movements for human liberty, seminal events mark a trajectory toward inevitable success.

1. It starts with consciousness-raising.  As human rights lawyer Sylvia Law describes, one day a light comes on. People experience their own private “Aha!” moment. Then more do, and multiple sparks of recognition illuminate the injustice for all to see.  In the 1970s LGBT advocates worked hard to muster light in the darkness of false assumptions, degradation and violence.

For end-of-life choices, common wisdom was that with death, comes suffering.  We’ve heard doctors tell a family, “We all have to suffer some, don’t we?”  In our movement sparks first fly when people witness end-of-life agony and indignity and think, “This is not right.” Grief magnifies outrage, and awareness dawns that American law and medicine fails us at life’s end.

2. Soon fear, shame and guilt no longer keep outrage in check. People in our movement share this with LGBT communities.  We all have stories of deaths of loved ones. Maybe we shrank from the bedside and let doctors continue with tubes, needles and machines long after any good could come of it. Maybe we heeded an urgent plea to increase the morphine and speed death’s advance. Or maybe we didn’t and feel guilty for that. Maybe Dad shot himself when he was dying of cancer and the family lives with that trauma.

Powerful forces conspire to keep talk of death taboo. We’re told it’s wrong to seek the relief of death when cancer’s final agonies take hold.  But telling our stories at kitchen tables, church basements and community gatherings turns fear into courage, grief into action. My most moving experiences come when we open a conversation about end-of-life choices, see pent-up emotion flood the room and see how eagerly people sign up for advocacy and public service.

3. The Vatican fights both movementsCatholic hierarchy uses its political power to oppose both movements. With hysterical doomsday rhetoric, it denounces gay and lesbian human rights as an “ideology of evil” and the movement for end-of-life choices as a “culture of death.”  To defeat Death with Dignity bills, local bishops have deployed their lobbyists and issued threats of shunning and denunciation from the pulpit to non-Catholic lawmakers and denial of the sacrament of communion or excommunication, to Catholic ones.  In a surprising turn of events, Roman Catholic leaders in Maine announced they will play no role in fundraising, staffing, advertising, or campaigning against marriage equality.

I hope Catholic leadership’s decision to stay its hand in Maine arises from a calculation of changing sentiment in society.  If Gays and Lesbians are beyond religious oppression it’s because they are no longer vulnerable to shame and guilt for who they are or the rights they seek. Today lawmakers are more likely to embrace their Gay and Lesbian sons and daughters publicly than abandon them in silence and vote against their liberty.

If the pattern holds, it won’t be long before lawmakers are telling stories of the tragically painful deaths they’ve witnessed, rejecting the rhetoric of shame and voting courageously to empower people with choices at the end of life.

Bishops Step Over the Line

Over and over we see the U.S. Conference of Catholic Bishops confuse the right to exercise their religion with a right to impose their religion on Americans who don’t share it. This is not a subtle difference.

And, as Bill Moyers points out in the context of their intransigence on access to birth control, the bishops aren’t content with an exception from the rule that, like other employers, they provide birth control coverage to workers in their hospitals and universities. They also want to be able to keep their employees from obtaining birth control pills from a third-party insurer, at no cost to themselves.

This stance grossly abuses the rights and privileges of American business owners. Let’s face it: Hospitals are money-making operations, dominant in the economy and relying in great measure on government Medicare contracts and employer-based health plans. To allow one very large employer to dictate private healthcare decisions of its employees would distort the American ideal of freedom of religion into a very un-American practice of religious tyranny. The bishops want to control everyone’s moral decisions, Catholics and non-Catholics alike.

In the context of end-of-life choice, the bishops enforce Ethical and Religious Directives for Catholic Healthcare. This document instructs doctors to ignore advance directives that conflict with Catholic moral teaching (ERD #24), requires patients in permanent vegetative states to overcome a presumption in favor of indefinite tube feeding (ERD #58), disallows as “euthanasia” a patient’s refusal of treatment such as kidney dialysis if intended to advance the time of death (ERD’s #59 and 60), and urges employees to offer religious teaching on the redemptive power of suffering when standard comfort care fails (ERD #61).

With regard to Oregon and Washington’s Death with Dignity Acts, the bishops use the machinery of Catholic healthcare to withhold information and support for aid in dying, a legal end-of-life choice. Catholic hospitals, hospices and healthcare systems in those states often impose a draconian gag rule on their employees to deprive patients in their care of comprehensive knowledge of end-of-life choices. As noted by Crosscut and The Seattle Timesthe Sisters of Providence healthcare system imposed policy that employees can’t discuss the issue with patients, even if asked. In response, Steven Saxe, director of the state’s Office of Health Professions and Facilities, reassured healthcare workers that all healthcare providers, including those at Providence, have a “protected right to offer basic information” about the law to patients.

An oppressive gag rule not only violates a cardinal rule of informed consent in healthcare, it also tramples the free speech rights and professional ethics of hospital employees and physician contractors.

As with contraception, a free society must find the middle ground. Catholic Bishops must be free to exercise their religion, yet we cannot allow them to deny that same freedom to the rest of us.