X-Message-Number: 25985 Date: Wed, 06 Apr 2005 14:18:11 -0400 From: Joseph Bloch <> Subject: [Fwd: [wtaboard] Writing an H+ living will/advance directive] Forwarded here with permission of the author... Joseph Enhance your body "beyond well" and your mind "beyond normal": http://www.humanenhancement.com New Jersey Transhumanist Association: http://www.goldenfuture.net/njta PostHumanity Rising: http://transhumanist.blogspot.com/ (updated 4/3/05) -------- Original Message -------- Subject: [wtaboard] Writing an H+ living will/advance directive Date: Wed, 6 Apr 2005 09:58:48 -0400 From: Hughes, James J. <> There have been some recent interesting discussions among transhumanists in the States about the ramifications of the Schiavo case for end-of-life decision-making and attitudes. It appear that most transhumanists believed (as I do) that the current US law around advance directives/surrogate decision-making respects individual autonomy, and therefore that we should defend the principle of surrogate decision-making in cases like Schiavo. Others were concerned that we not endorse too hastily the notion of pulling the plug on "futile" cases, and not buy into able-ist notions of what an acceptable life is. Both legitimate transhumanist concerns. What everyone agreed on, however, even most of the Christian Right, is that everyone should have a living will to give a clear guidance about their end-of-life wishes. There are a variety of instruments out there, but most of them do not take into account the kinds of remediative therapies that we imagine coming along soon, and they certainly don't take into account cryonics. Although most people request withdrawal of treatment at X stage, bioethicists and clinicians have long fretted about the possibility of advance directives that request life support beyond "futility" and even beyond "death". These seem to be likely places transhumanist advance directives might go. I think we should write and offer a living will that suggests transhumanist options and values, whatever those may be, including some decision-making for cryo patients about when, if ever, there is no longer a point in proceeding with cryo-preservation. Todd: has anyone at Alcor been working along these lines? The Life Extension Society has a Living Will for cryonics here: http://keithlynch.net/les/amd.html Other examples of living wills: Five Choices: http://www.agingwithdignity.org/5wishes.html http://www.thoracic.org/assemblies/cc/ccprimer/livingwill.html http://www.wills-net.com/web/canada/living_wills.html Ezekiel and Linda Emanuel's effort at a thorough one: http://www.abanet.org/aging/toolkit/tool10.pdf "The Legal Status of Cryonics Patients," By Stephen Bridge http://www.alcor.org/Library/html/legalstatus.html And my reflections on end-of-life decision-making as neuro-remediation advances: "The Death of Death" http://www.changesurfer.com/BD/2004/deathofdeath.htm http://philanthropy.com/free/update/2005/03/2005032301.htm March 23, 2005 Florida Case Sparks New Interest in End-of-Life Nonprofit Groups By Suzanne Perry The massive publicity surrounding the legal battle over the fate of Terri Schiavo -- a brain-damaged woman in Florida kept alive for 15 years by a feeding tube -- has prompted thousands of Americans to contact charities that promote changes in the care and legal options available to dying people. Jon Radulovic, a spokesman for the National Hospice and Palliative Care Organization, in Alexandria, Va., says his organization has been flooded with requests for "advance directives," forms that allow people to spell out the kinds of medical treatment they would like to receive if they become terminally ill, as well as who should make decisions for them if they become incapacitated. "Generally, we might get seven or eight calls a day on a good day," Mr. Radulovic says. On March 21, the day that the U.S. House of Representatives voted to transfer jurisdiction of the Schiavo case to federal courts, he says the group received about 100 calls within an hour of opening for business. Mr. Radulovic says the publicity has not yet led to any increase in donations to support his organization's work. "It will be interesting to see," he says. "Will people look back with a philanthropic eye?" Aging with Dignity, in Tallahassee, Fla., received at least 2,000 requests for its Five Wishes Living Will on the day Congress intervened in the case, says Paul Malley, president. "Most people in America, if they're watching TV, reading newspapers, know about Terri Schiavo," he says. "The automatic response for most people is, What can I do to avoid this situation for my family?" The group sells its living-will document -- which allows people to specify the medical care they would like in case of serious illness, as well as instruct loved ones about more personal issues such as how they want to be remembered -- for $5 (or $1 each for orders of 25 or more). That revenue covers the organization's costs and provides money for it to conduct forums and workshops across the country, Mr. Malley says. Aging with Dignity has distributed 4.5 million living-will documents since it was founded in 1996 -- 1 million of them since the Schiavo case started attracting widespread news-media attention in October 2003, he adds. Family Dispute At Compassion & Choices, in Portland, Ore., Jason Renaud, the charity's development and research manager, says the tug of war between Ms. Schiavo's husband and her parents has led many people to think about issues they normally hate to contemplate. He says he hopes donors will seize the opportunity to help educate Americans about end-of-life issues while they are receptive to the message. "We're really hoping someone steps up and gives us a challenging amount of money so we can inform America that this is a problem that has an answer," he says. "If you poured in half a million dollars to educate Americans about advance directives, that half a million would go 90 percent further now" than a year ago. Compassion & Choices -- a new organization that unites End-of-Life Choices, a group that promotes laws to allow terminally ill people to end their lives under some conditions, and Compassion in Dying Federation, a group that promotes better medical care, such as pain control for dying patients -- provides living-will documents at no charge. The legal battle over Ms. Schiavo's care, and especially Congress's intervention, galvanized many supporters of the Death With Dignity National Center, in Portland, Ore., an organization that promotes assisted-suicide laws modeled after the one approved by Oregon voters. Cindy Scheel, the group's director for development, says the charity has been "inundated" by calls and letters from donors. "People are outraged that this is happening," she says. She says it's too early to say whether that passion will translate into more donations, although she expects that it will. Joanne Lynn, a member of the board of Americans for Better Care of the Dying, in Washington, says fund raising for programs to help people with terminal illnesses is tough. "It's been much easier to persuade people to invest in curing cancer than in living well with fatal cancer," she says. She and others note that a major grant-making project of the Open Society Institute, in New York, has ended, and another by the Robert Wood Johnson Foundation, in Princeton, N.J., is winding down. Open Society, founded by the philanthropist George Soros, gave $45-million from 1994 to 2003 through its Project on Death in America to programs to improve the care of dying people. The Robert Wood Johnson Foundation has given $150-million since 1995 to programs that promote pain management and other palliative medical treatment for the seriously ill and that educate people about the need for written documents spelling out their wishes and other health-care planning. The money helped Aging with Dignity start its Five Wishes Living Will program. Kathleen Foley, a physician who led the Project on Death in America, says she hopes other foundations will take up the gauntlet. The Schiavo case has created a "teachable moment" about critical issues surrounding the care of seriously ill people, she says. "Will new foundations come to the fore and address this? I hope so." _______________________________________________ wtaboard mailing list http://www.transhumanism.org/mailman/listinfo/wtaboard Rate This Message: http://www.cryonet.org/cgi-bin/rate.cgi?msg=25985