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."

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