Should You Have a Living Will?

There's a fantastic post at GeriPal about the efficacy of the Living Will and Advance Directive documents that many end of life rights advocates -- including myself -- have promoted. What the articles does well is look at a number of current studies and articles and address points made by prominent activists. It asks us what the best way is for a patient to protect their rights at the end of life. Sadly, there is no foolproof way to ensure that the medical decisions made for you will be consistent with what you want. I recommend you read the entire post, but here's a clip:

“Enough. The living will has failed, and it is time to say so.” So said Angela Fagerlin and Carl Schneider in 2004. “Living wills are still widely and confidently urged on patients, and they retain the allegiance of many. For these loyal advocates, we offer systematic proof that such persistence in error is but the triumph of dogma over inquiry and hope over experience.” Joann Lynn wrote an essay titled Why I Don’t Have a Living Will, saying, “I do not have a living will because I fear that the effects of having one would be worse, in my situation, than not having one. How could this be? A living will of the standard format attends to priorities that are not my own, addresses procedures rather than outcomes, and requires substantial interpretation without guaranteeing a reliable interpreter.” Thomas Pendergast said, “[Since the passage of the Patient Self Determination Act in 1990] advance directives are recorded by medical personnel more often but are not completed by patients more frequently. The process of recording them does not enhance patient-physician communication. When available, advance directives do not change care or reduce hospital resources. The most ambitious study of advance care planning, the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments [SUPPORT], failed to show any change in outcomes after an extensive intervention.” Prominent figures in palliative care decried persistent research and health policy efforts to promote living wills, saying, “when have living wills ever been shown to do anything???!!!”

And yet, after being thrashed to within an inch of death, two recent studies breathed life into advance directives. Before getting into the particulars of these studies, it’s important to understand how and why we came to have advance directives in the first place.

Family Guy and the Fifth Anniversary of Terri Schiavo's Death.

A recent episode of The Family Guy on Fox featured a musical segment based on the death of Terri Schiavo. Everybody has been weighing in on the controversy. Here are a few places where you can read more about it:

The Family Guy episode at hulu

Thaddeus Pope's Medical Futility Blog

Deacon for Life

WTSP news in Tampa Bay, Florida notes that the Schindler family is calling for Fox to drop the Family Guy program

From TampaBay.com

Wesley J. Smith at Secondhandsmoke

Press Release from the Schindler family at ChristianNewsWire

And for those of you interested, Family Research Council will host a panel on Terri Schiavo on March 31, the anniversary of her death, in DC. Robert Schindler, her brother (and now the title of full-time "pro-life" and disability rights activist) and other pro life voices will be there. You can find the link for a live webcast (11 am) here.

Georgia Bill Seeks to Make Artificial Nutrition and Hydration Obligatory.

Georgia Right to Life and the lawyer who represented Terri Schiavo's family are the primary proponents of a new bill in that state that claims it will "protect citizens" in end of life care, but that would actually limit patient choice at the end of life. The bill seeks to, as the Catholic church did in November, determine artificial nutrition and hydration as "obligatory care."

I haven't seen the language of the bill but judging by the sources, the effort is to prevent medical proxies from removing their loved ones from artificial nutrition and hydration, despite counsel from doctors and living will designation.

Another interesting aspect of this report is the increased encroachment of Right to Life, Catholic, and "pro-life" groups into areas of patients' rights other than reproductive rights. Strategically, it makes sense. These organizations are mobilized, have many resources, and have been allied by their common wish to dictate discriminatory policy to patients.

The same spin that has been used to reduce access to women's health care services is now being applied to seniors' medical rights. I only hope that true patients' rights activists can unite to deter this imposition of doctrinal care on all of society.

ATLANTA, Feb. 18/Christian Newswire/ -- This past week H.B. 1178 "The Patient's Right to Nutrition and Hydration Act" was introduced in the Georgia House by Representative Martin Scott and co-sponsored by Rep. Tim Bearden and Rep. Mark Butler to help provide more protections for Georgian citizens in end of life care.

This legislation seeks to insure that no patient shall be denied food and hydration. It has been brought to the attention of Georgia Right to Life and our legislature that there have been cases where patients have been denied basic food and hydration in order to speed up the dying process.

Mike Griffin, Legislative Director of GRTL noted, "We live in a time where it is illegal to deny a dog or cat food or water, but it is legal to deny a person food and water. We must value every person's life, especially in the final moments of life."

Attorney David Gibbs, counsel for the Schindler family in the Terri Schiavo case, has provided legal counsel on this bill. Mr. Gibbs noted, "Food and water should not be considered 'life support,' in my opinion. If this bill is passed into law, Georgia would recognize that important distinction to protect its citizens."

This bill seeks, among other things, to establish the fact that the feeding tube should be considered ordinary care, not medical care. The bill does allow for exceptions under an advanced directive. Currently in Georgia physicians and administrators can override a patient's wishes in an advanced directive.

"Ultimately, this bill seeks to strengthen patient's rights in Georgia. Under existing law, a doctor can override a patient's desires to have the basic essentials of food and water. No medical establishment should take away the right from a patient or their family the right to make the very private and tough decisions about end of life care," stated Dan Becker, President of Georgia Right to Life.

Georgia Right to Life promotes respect and effective legal protection for all human life from its earliest biological beginning through natural death. GRTL is one of the number of organizations that have adopted Personhood as the most effective pro-life strategy for the 21st century.

RIP Ruth Proskauer-Smith.

She co-founded NARAL. She worked tirelessly for end of life rights. She lived 102 years.

From Compassion & Choices president Barbara Coombs Lee:

Ruth Proskauer Smith, a friend and an activist for individual autonomy, died last night, closing her life in the manner she had wished for, planned for and devoted her life to securing as her right.

When I met Ruth in 1996, she was already an icon in the movement for freedom of choice at the end-of-life. She had a long list of accomplishments behind her. But she was not happy. At that time, only Oregon had succeeded in affirmatively legalizing aid in dying, and its Death With Dignity law languished in legal limbo. Ruth was determined to make a difference and joined the work of Compassion & Choices, serving as a dedicated ambassador of end-of-life choice.

Among the things I treasure from my 15-year friendship with Ruth is having had the opportunity to see her growing pleasure with advances we’ve achieved in end-of-life choice. Together Ruth and I witnessed the triumph of justice over repeated legal challenges to Oregon’s law, the passage and implementation of Death With Dignity in Washington, the passage in California of the Terminally Ill Patients’ Right to Know End-of-Life Options Act and a ruling by the Montana Supreme Court to recognize and affirm physician aid in dying.

Ruth was a generous, fierce and dedicated supporter of our movement, as she was forreproductive choice.

From HuffPo:

Ruth Proskauer Smith, a founding hero of the reproductive rights movement, died last night at 102 years of age.

As we celebrate today the anniversary of Roe v. Wade - an historic decision of which Ruth was part - we mourn the loss of this remarkable woman.

Ruth Proskauer Smith's history on behalf of reproductive freedom spans back to the 1940's, when she began advocating to give women access to birth control. In 1969, she co-founded NARAL with the goal of litigating against state abortion prohibitions, a life mission that led us directly to the steps of the United States Supreme Court and Roe v. Wade. For her work in reproductive rights, NARAL Pro-Choice New York honored her with a Lifetime Achievement Award at our 2009 Champions of Choice Luncheon.

While she lived to see the legalization of abortion and took pride in her role in ensuring safe healthcare, she also recognized the unrealized promise of full access and the challenges that remain.

We honor Ruth as a founder and are reminded of all the young women activists today who will be the next leaders of our movement. On this 37th anniversary of Roe v. Wade, we send out thanks to the women who came before and all those who will come after.

Discrimination by State.

If you're gay, you're better off in the Northeast, if you're terminally ill, you're better off in the Northwest. Or so the country stands now where predominantly Northeastern states allow same-sex marriage and Northwestern ones allow aid in dying.

That's the point John Crisp makes at ScrippsNews today:

A good friend is in the middle of a challenging battle with cancer. She reports lying in bed the other night after the lights were out and musing about whether, if she decided to leave her home state of Texas, she would choose a state that permits physician-assisted suicide or one that would allow her finally to marry her long-time, same-sex partner.

Unfortunately, no state in America allows both. For some reason, the states with progressive laws on physician-assisted suicide are in the northwest: Washington, Oregon, Montana. And the states that permit same-sex marriage are mostly in the northeast, like Massachusetts, New Hampshire, and Vermont. Texas isn't likely to permit either one anytime soon.

These two issues may not appear to have much in common, but both have an equally difficult time getting much traction in our country. Some states -- California and Maine, for example -- have made tentative moves toward permitting same-sex marriage and then pulled back, contributing to the frustration that gays and lesbians must feel as they try to gain a completely equal footing with heterosexuals in our culture.

Equality and laws that prevent discrimination against the dying or homosexuals seem to have a regional prevalence. But the issue is more complicated than regional flavor.

Because of Federalism, the autonomy afforded states to make their own laws by the US government, laws have often lingered in places with strong cultural prejudice toward minority groups. The most obvious example is the South and slavery. But other factors are at play with same-sex marriage and aid in dying.

Some state constitutions are more open to personal autonomy, like Montana's which the Supreme Court there ruled on New Years Eve did not prevent aid in dying.

Some states have a stronger religious foothold where everything from education to women's reproductive rights are kept in the last century to appease the powerful church organizations there.

Homosexuality is clearly more tolerated in urban areas, like the Northeast, where gays have gravitated from their rural homes or where living openly doesn't mean risking a lynching.

And a concentration of advocates can make a state more tolerant of their rights, like San Francisco.

While federalism works wonderfully for state-based issues like, say - and this is a stretch but the only two examples I can come up with - protecting local industries or tackling local environmental issues, it's a disaster for protecting minorities and the rights of those discriminated against.

The federal government can legislate laws that override state laws but the bill must specifically tackles such inequalities. Not all federal laws trump state laws. And the US Supreme Court can make case decisions that translate to compliance for all states but, as we've seen with abortion, states then can, under the influence of discriminatory groups there, work to mitigate such laws by limiting access.

Our constitution may claim that equality is guaranteed but cultural forces work tirelessly to maintain discriminatory practice in states where religious bias is strong and powerful. Changing the culture is no easy task but doing so is perhaps the only way to prevent federal court decisions from creating a backlash locally, as abortion did in the 70s and 80s all over the country, or civil rights legislation did in the South.

Would you move to a new state if it provided you more freedoms than the one you're in? Well, I'm in New York City these days and it's a city/state I chose because of tolerance and diversity. As our population becomes more mobile, less tied to home and family, and more urban, values migrate and discriminatory practices are ameliorated. I'd be a fool to suggest that the gutting of rural America is caused by a desire for greater tolerance of "non-traditional" lifestyles but that's certainly a factor in state cultures.

But that kind of movement is a privilege. Not everyone has the resources to pick up and go to a new place. If you're gay in rural Texas, best to keep your head down or get out. And that is the fallacy of US equality. Some states or regions are more equal than others.

More Manhattan Declaration.

If you are so inclined, you may read the entire Declaration here, and even sign it.

Timothy Kincaid reminds us of the segment of religious society that the Declaration represents:

First, let us say what this document is not. It is not, as the NY Times described it, a situation in which “Christian Leaders Unite on Political Issues“. Indeed, this is but a segment of Christian thought, claiming the mantle of Christian history and tradition but excluding broad segments of the faith.

One need only glance at the signatories to know the nature of the alliance. Present are some who are well known names in the political culture wars who have long striven to impose their religious views by force of law on the unbelievers: Dr. James Dobson, Chuck Colson, Gary Bauer, and Tony Perkins. Some are religious leaders who have been recently shifting their realm of influence away from faith towards secular domination: Ravi Zacharias, Dr. Albert Mohler, and Jonathan Falwell.

But this is not just broadly social conservatives. There is, instead, a concentration of those who focus on “opposing the homosexual agenda”. There are a few religious activists who seem dedicated and committed (obsessed, one might think) to fighting equality for gay people: Ken Hutcherson, Bishop Harry Jackson, and Jim Garlow. And then, inexplicably, some who are not religious leaders at all but social activists whose primary occupation is in seeking the political institutionalizing of inequality to gay people: Maggie Gallagher, Frank Schubert, and William Donohue.

Perhaps the most difficult to explain, and by far the most troubling name present, is The Most Rev. Peter J. Akinola, Primate, Anglican Church of Nigeria.

There is no explanation provided as to what relevance Akinola has on what is a uniquely American collection. But his participation is not accidental. And, as I will discuss momentarily, his is perhaps the key that explains the true nature of this manifesto.

This could be seen as nothing more that “the usual suspects”, a rehashing of the Moral Majority or the Christian Coalition or any other of the loose groupings of religious authoritarians, were it not for one import inclusion. There are nine Catholic Archbishops who signed on to this document.

Ideologically as dissimilar as possible, these two Christian extremes – one whose doctrine is based in tradition, liturgy, and hierarchy, the other whose doctrine is based in reform, spirit-led worship, and direct divine revelation – have set aside ancient hostilities and theological beliefs that doubt the other’s right to be considered “Christian” and have now joined in a common purpose: denying your rights.

But as important as who is present, is who is absent.

Among the signatories I was unable to find any members of the United Church of Christ, Episcopal Church, Presbyterian Church (USA), Friends (Quaker), Disciples of Christ, Unitarian Universalists or American Baptists. There was one United Methodist minister.

In short, a whole branch of Christianity, Mainline Christianity, was missing, including many who no doubt would agree with the goals of banning abortion and forbidding same-sex marriage. This exclusion is, I believe, integral to understanding the true purpose of this manifesto.

Kincaid draws the conclusion that this is a declaration of war by one segment of faith in the US against another, a showing of jealousy at the power that "mainline" religion in the US has garnered:

Note the presence of the second signatory, Peter Akinola? He is the Nigerian Anglican who has been missionizing the United States in an effort to hurt the Episcopal Church. His inclusion is a very clear message sent to the EC that they are a target for the Catholic Church and the evangelical churches who will use whatever political power they may wield in the future to thwart her position in the nation.

This manifesto is, I believe, less a declaration of war on gay people and those with unplanned pregnancies than it is a declaration of war on other Christian faiths.

snip

This manifesto says, in effect, “We are the Christians. We are the ‘heirs of a 2,000-year tradition of proclaiming God’s word’, and we alone will speak for the faith.”

Kincaid sees a clear agenda in the Declaration regarding the Kill Gays Bill in Uganda and AIDs in general:

Around the globe … take steps necessary to halt the spread of preventable diseases like AIDS

The situations in Nigeria and Uganda are not accidental nor unrelated to the efforts of conservative Americans. Although virtually all of the spread of AIDS in Africa is related to heterosexuality, this will be an excuse to pass draconian laws seeking to repress, incarcerate, or execute gay men and women.

In addition to being a slam against the Episcopal Church, the inclusion of Akinola announces that pogroms against gay Africans will have the endorsement of both the Catholic Church and conservative evangelical churches.

We should not expect the calls for criminal prosecution of gay people to be limited to foreign soil. Should such a fervor be fostered internationally, it is unquestionable that this will lend support to efforts to reinstate or bolster oppression here.

It is no longer a matter of curiosity that the Catholic Church has not spoken out against the Kill Gays bill in Uganda. Nor had Dr. Mohler or Dr. Dobson. Nor, indeed, has any signatory of this document.

From Newsweek:

Addressed not only to Christians, but to President Obama, Congress, and civil authorities, the treatise will be available online for individuals to sign as well. When asked whether nonpayment of taxes would be an acceptable form of protest, George, who is also a lawyer, said he was currently representing a West Virginia taxpayer who is refusing to pay the small percentage of her bill that might go toward state-funded abortions (“Litigation is still pending,” said George). Institutions were also called on to participate in the civil disobedience if, for example, if a Catholic hospital is under pressure to provide services that go against Catholic beliefs. Although conscience protections do exist for many institutions already, there are areas, cited on Friday, such as when the Catholic Charities of Boston halted adoption services, rather than comply with state law and allow children to be adopted by homosexual couples.

According to the Declaration, “We must be willing to defend, even at risk and cost to ourselves and our institutions, the lives of our brothers and sisters at every stage of development and in every condition.” Yet similar documents, such as last year’s Evangelical Manifesto, have been unveiled with great fanfare butlittle consequence. Civil disobedience, especially giving up a job, is a lot to ask in the current economy and is a hard notion, even for some signers of the Declaration.

Tony Perkins, president of the Family Research Council tells NEWSWEEK the point of the Declaration is really to avoid mistakes of the past, such as when religious leaders did not stand up early enough against no-fault divorce, which he says led directly to the breakup of families and high divorce rates. “I’m a former police officer, and I have hard time with civil disobedience, but if it comes to the point where our religious liberty is at risk, I’d not only participate but would encourage people to resist.”