Friday, November 20, 2009

The Death of Ivan Ilyich and Redemptive Suffering.

I missed this fantastic post at GeriPal when it first went up in September. Thankfully, it's a timeless post that asks readers to consider the kinds of suffering experienced at the end of life, how the medical profession currently treats them and how it should treat them.

Please head over to the site and read the comments. As I struggle away on writing about end of life issues, I find the discourse on suffering to be the most contested. No one wants to talk or think (or invest in the study of) pain and suffering. Blame taboo, blame the tussle over faith and the meaning of life, blame fear; whatever our reticence as a society to examine end of life care, death always comes. Facing it is no real bravery; it is a fact of life. Ensuring patients' choice at the end of life is not a gratuitous act; it is a matter of human rights. I am always concerned when voices within the medical profession rise up in defense of pain and suffering.

This week’s Lancet includes an article titled “The Death of Ivan Ilyich and pain relief at the end of life” authored by Guy Micco and GeriPal’s very own Alex Smith and Patrice Villars (it can be viewed for free if you register). This is a thought provoking article focused on the question of whether there is overuse of pharmaceuticals to treat various forms of suffering in hospice and palliative medicine. It also serves as a nice follow-up to Patrice’s post on the geriatric care of the hospice patient.

The authors argue that a good death, as seen through their interpretation of
The Death of Ivan Ilyich, may include physical and existential suffering. Tolstoy’s character finds redemption in his suffering; he remains conscious through the agony of a prolonged and painful death and ends up with a greater understanding of life. The authors further argue that such a moment of clarity may no longer occur if we rely on practices that promote complete freedom from suffering through the over use of pharmaceuticals:
“What would happen if Ivan Ilyich—a modern day “John Doe” or “Everyman”—were dying in the USA now? At home or in the hospital, it could be the same story: when he became unable to speak coherently for himself, his wife or perhaps the ward or hospice nurse, seeing him flail and hearing him scream, would request morphine and ever-more morphine. And, if that did not work, something would be found that would work to extinguish the visible signs of discomfort: lorazepam, haloperidol, phenobarbital. Drugged, but without “pain”, what would become of Ivan Ilyich's inner experience? Would it be transformed? Would it go away?”
My immediate thoughts after reading this paragraph turned to the increasing use of symptom scores to assess quality in hospice and palliative medicine (just this week I finished reading one bereavement survey where the benchmark was NEVER having pain). By setting a one-size-fits-all benchmark of quality on complete pain relief we may be going against the very foundation of palliative care – respecting patients' and families' values and preferences regarding end-of-life care. Some patients may value lucidity over freedom from physical discomfort; recognizing this would be a true measure of quality in hospice and palliative care.
What do you think? Do we, as a hospice and palliative care community, have an over reliance on the pharmaceutical relief of suffering, whether it be from pain, anxiety, or “agitation”? Is Tolstoy’s idea of a good death “redemptive” for some leading to “self-understanding or spiritual awakening”? Did the authors misread Tolstoy (was his death even redemptive?)

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The Legality of Forced Feedings in Hospitals and Prisons.

The fight for patients' rights is up against three primary forces in US society: the church, the state and the medical industry. (It's my contention that these three entities are vying for jurisdiction over suffering, but I'll leave that to another post.) Any one of them is damaging enough to patient autonomy, but when two of them collude, the imposition on the rights of patients is most egregious.

For instance, I hope to have an article out soon at AlterNet which looks at the Catholic church's imposition on patients' rights at the 600 hospitals they manage throughout the US. The church manages these facilities (and hospices, long-term care homes, and health care networks) according to Ethical and Religious Directives (ERDs) that are written and enforced by the US Conference of Catholic Bishops (recently in the news for having their way with Stupak-Pitts and health care reform). At these health care facilities, patients must abide by the church's doctrine, even though these organizations are about 50% funded by the US government. (Note the hypocrisy of the church for working to prevent public funds usage for abortion, yet collecting a majority of its revenue from the public and using it to impose discriminating health care practices.)

Sterilizations, tubal ligations, STD and AIDS prevention, contraception, fertilization treatments for lesbian or unmarried women, and advance directive requests are all discluded from hospitals' service rosters because of Catholic management. These are not services which only restrict women's autonomy - though abortion does raise the most noise and reduces the conversation to a contested service - but the autonomy of patients on the whole. Forty-eight Catholic hospitals are the sole providers for their communities. And Catholic hospitals are merging with secular ones every day because of the difficult economy.

The USCCB recently revised their ERDs to change artificial nutrition and hydration (ANH) usage. Despite the legality in all 50 states of the removal of a patient from ANH, either by the patient's request or their medical proxy's, the Catholic church will now refuse such removal, claiming that ANH is "obligatory" care. Further, a patient who does not wish to be put on ANH will be, a practice essentially asserting that the Catholic Church has precedent over the rights of every patient.

Another area of society that witnesses the collusion of two of these forces (state, church, or medical industry) in opposition to patient's rights is the penal system. The Lancet, a British medical journal, has two brief articles in their November 21 publication on the issue of force feeding of inmates that I believe greatly resonates with issues of patients' rights in general society, though, as I mentioned, the actors are not church and state but medical profession and state.

The first article by George Annas reviews two new books: Military Medical Ethics: Issues Regarding Dual Loyalties, Workshop Summaries (National Academies Press, 2009) and Interrogations, Forced Feedings, and the Role of Health Care Professionals: New Perspectives on International Human Rights (Harvard University Press, 2009). In part, the article reads (free registration required):

Interrogations, Forced Feedings, and the Role of Health Professionals grew out of another workshop sponsored by Harvard Law School's Human Rights Program. Like the IOM report, the most striking feature of the book is the contrast between the views of the US military and those of human rights groups. Edmund Howe, a leading expert on US military medical ethics, argues that the strongest rationale for military physicians to force-feed hunger strikers is that it respects the prisoners by respecting “the sanctity of their lives”, albeit at the expense of their autonomy. Although he believes that saving the hunger striker's life is the only real argument in favour of force-feeding, Howe concedes that under current protocol force-feeding is initiated long before the hunger striker is in any medical danger, and he has a difficult time justifying force-feeding before it is medically necessary to preserve the prisoner's life or health. By contrast, James Welsh of Amnesty International summarises his organisation's 30-year involvement in the prison hunger strike question, beginning with the Red Army Faction's hunger strikes in West German prisons in 1977. All hunger strikes have their own unique settings and provide ample opportunities for clashes between physicians and prison officials. Welsh's conclusions on Guantanamo are, nonetheless, unequivocal. He describes the methods used to break hunger strikes there as “transparently oppressive” and as constituting “a form of cruel, inhuman, and degrading treatment intended to break the strike and to form part of the stripping away of prisoners' human rights”.

The US Military (the state) is currently ending hunger strikes in Guantanamo and elsewhere (I'll get to a non-military example in Connecticut in a minute) by claiming, "sanctity of life," an argument long used by Catholic and evangelical groups against women's autonomy (reproductive rights) and autonomy of the dying (end of life rights to aid in dying and removal from ANH) to assert that the claiming body (the church) has jurisdiction over the patient, and not the patient. Inmates are strapped down in chairs and via nasogastric tubes, fed Ensure (in three flavors, strawberry, butter pecan, and chocolate, the article states.) The Red Cross and Amnesty International have long considered force feeding as torture. Yet the practice continues.

The issue of "dual loyalty" most resonates with me for it's application to Catholic practices regarding ANH and lobbying for strong a conscience clause in health care reform. Is a physician required to be loyal to the patient, as their profession dictates, or to the state or the church?

The article also asserts that while forced feedings may end at Guantanamo when it closes, those patients on hunger strike will be moved to prisons in the US.

...there are several cases in US courts in which prisoners currently being force-fed are challenging their force-feeding as unconstitutional. These cases raise the question of whether force-feeding is “cruel and unusual punishment” under the 8th amendment, or done in a way that “shocks the conscience” as prohibited by the 5th and 14th amendments—not, as in Guantanamo, whether it is a violation of Common Article 3 of the Geneva Conventions.

Two solutions to the torture of forced feedings are suggested by the article: the Department of Defense of the Obama administration's rescinding of current "guidance" and reassertion of "traditional US military doctrine that no physician in the US military need compromise medical ethics to serve their country," and "the opposing positions of the Department of Defense and the World Medical Association should be brought to a neutral authoritative body, such as the state boards that license US civilian and military physicians" for resolution.

The second brief Lancet article cites a case brought to the Connecticut courts regarding Corrigan-Radgowski Correctional Center inmate William Coleman.

Coleman and his lawyers argue that he has a constitutional right to determine what happens to his body, and the right to refuse medical treatment including resuscitation or assisted feeding. He has been force-fed via a nasogastric tube inserted by a physician on occasions since January, 2008, when Judge Graham issued a temporary injunction that allowed the state to feed Coleman by force. This case is one of several in which prisoners in US states are challenging force-feeding as unconstitutional on varying grounds.
Physicians throughout the world continue to be involved in force-feeding despite its prohibition by the World Medical Association (WMA) in Declarations (to which the American Medical Association is a signatory), and despite the provisions of the Geneva Conventions. The WMA states that the autonomy of prisoners who decide, voluntarily, to refuse food must be respected, provided that their mental capacity to make the decision is unimpaired. Physicians such as military doctors, who might have dual loyalties, should make patients their priority, according to the WMA.
Cases of forced feeding in military prisons like Guantanamo and in civilian prisons like the Connecticut correctional facility resonate greatly with the Catholic church's "forced feeding" in hospitals. Inserting a feeding and hydration tube, an invasive procedure, when the patient or his or her medical proxy deny the procedure is in essence forced feeding. The legal application of these cases to denial of patients' rights in US hospitals is in my mind direct.
Yet, the US has not considered Catholic entities as agents of the state, despite their license to provide social services and their federal funding. However, the state's collusion in "forced feeding" of patients in Catholic hospitals should not be overlooked.

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The Episcopal Church Welcomes You.

From Religion Press Release Services: A new ad campaign by the Episcopal church emphasizes inclusiveness rather than exclusiveness in an attempt to garner more members:

The Episcopal Church breaks new advertising:
confirms its beliefs, welcomes all Christians

NYC, NY (November 20, 2009) -- The Episcopal Church's core beliefs and practices, including those related to Christ, the Bible, women's ordination and relationships, are featured in a new, national newspaper ad breaking today and on its website, according to Anne Rudig, Director of Communication.

"We want to herald and share our welcoming message," explained Rudig. "We are bringing our identity, our core beliefs, and our heritage to life in a manner that invites all to share.

The ad, which include a broader list of beliefs, can be viewed here:

"In the past few weeks, news about various religions has focused more about who's excluded from certain practices than who is included," Rudig said. "We follow Christ and believe that he's very clear that all are welcome. We strive to ‘love our neighbors as ourselves'."

"We are celebrating the fact The Episcopal Church recognizes that God doesn't differentiate between the gifts of men or women, lay or ordained," said the Rev. Canon Dr. Charles Robertson, canon to the Presiding Bishop and Primate. "We want people to know who we are and to make their own, informed decisions."

The work uses the theme The Episcopal Church Welcomes You with specific examples of the Church's beliefs. Among others, they include:

• As Episcopalians, we are followers of Jesus Christ, our Lord, and believe in the Father, Son and Holy Spirit.

• We uphold the Bible and worship with the Book of Common Prayer.

• We strive to love our neighbors as ourselves and respect the dignity of every person.

• We welcome men and women, married or celibate, to be ordained as bishops, priests, and deacons.

• We believe in amendment of life, the forgiveness of sin, and life everlasting.

• We affirm that committed relationships are lifelong and monogamous. Episcopalians also recognize that there is grace after divorce and do not deny the sacraments to those who have been divorced.

• We affirm that issues such as birth control are matters of personal informed conscience.

• We celebrate our unity in Christ while honoring our differences, always putting the work of love before uniformity of opinion.

• All are welcome to find a spiritual home in the Episcopal Church.

This is the first in a series of materials, produced in English and Spanish, to support The Episcopal Church's evangelism and outreach that will be developed over the coming months. Additional print, radio and collateral materials will be made available to its dioceses and churches.

"We want to be bolder and more proactive about letting people know that The Episcopal Church has so much to offer," said Robertson. "Our message continues to be that we welcome you into this adventurous life and reasonable faith in Christ...whoever 'you' may be."

The Episcopal Church also is focusing its outreach on mission work to alleviate poverty and injustice both in the United States and abroad.

The Episcopal Church welcomes all who worship Jesus Christ in 109 dioceses and three regional areas in 16 nations. The Episcopal Church is a member province of the worldwide Anglican Communion.

The Episcopal Church:

Include women and allow contraception? Not a bad marketing approach considering Catholic and evangelical actions of late to continue taking state funds but not honor marriage equality, patients' rights, or women's autonomy.


Upping the Ante: Civil Disobedience or Discrimination?

A piece-of-shite article from the New York Times today reports that:

Citing the Rev. Dr. Martin Luther King Jr.’s call to civil disobedience, 145 evangelical, Roman Catholic and Orthodox Christian leaders have signed a declaration saying they will not cooperate with laws that they say could be used to compel their institutions to participate in abortions, or to bless or in any way recognize same-sex couples.

“We pledge to each other, and to our fellow believers, that no power on earth, be it cultural or political, will intimidate us into silence or acquiescence,” it says.

The document will be released today at the Washington Press Club.

They want to signal to the Obama administration and to Congress that they are still a formidable force that will not compromise on abortion, stem-cell research or gay marriage. They hope to influence current debates over health care reform, the same-sex marriage bill in Washington, D.C., and the Employment Non-Discrimination Act, which would prohibit discrimination based on sexual orientation.

They say they also want to speak to younger Christians who have become engaged in issues like climate change and global poverty, and who are more accepting of homosexuality than their elders. They say they want to remind them that abortion, homosexuality and religious freedom are still paramount issues.

“We argue that there is a hierarchy of issues,” said Charles Colson, a prominent evangelical who founded Prison Fellowship after serving time in prison for his role in the Watergate scandal. “A lot of the younger evangelicals say they’re all alike. We’re hoping to educate them that these are the three most important issues.”

The document says, “We will not comply with any edict that purports to compel our institutions to participate in abortions, embryo-destructive research, assisted suicide andeuthanasia, or any other antilife act; nor will we bend to any rule purporting to force us to bless immoral sexual partnerships, treat them as marriages or the equivalent.”

Ira C. Lupu, a law professor at George Washington University Law School, said it was “fear-mongering” to suggest that religious institutions would be forced to do any of those things. He said they are protected by the First Amendment, and by conscience clauses that allow medical professionals and hospitals to opt out of performing certain procedures, and religious exemptions written into same-sex marriage bills.

The most likely points of controversy, he said, could involve religious groups that provide social services to the public. Such organizations could be obligated to provide social services to gay people or provide spousal benefits to married gay employees.

Mr. George, the legal scholar at Princeton University, argued that the conscience clauses and religious exemptions were insufficient, saying, “The dangers to religious liberty are very real.”

I call the report shite because it does what most media do with religion stories, it uses the language of the church out of deference and fails to address the deeper issues like civil rights and patients' rights. The writer fails to call discrimination what it is and fails to interview those who oppose what the document stands for.

The Catholic church operates 1 in 5 hospital beds in this country, imposing it's doctrine on 20% of the US population. With 50% federal funding, the USCCB dictates what care communities should receive. These religious entities are now united in the fight to oppose gay rights, patients' rights, and medical research. On the whole, they are working to impose their faith system on the public. And the Democrats have brought them into the party in the search for common ground and to make a broader party. Yet the first amendment is erroneously used like a shield to deflect any criticism of religious injustice. And the Times colludes in the legitimizing of such hate, discrimination and erosion of individual rights.

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