Little Updates from Thanksgiving Weekend

Several of the things that happened while we were gobbling:

Tulane may not be setting up the Big Easy Bioethics Center just yet but it is at least setting up a pretty interesting speakers' series. Don't go drunk, except maybe to the enhancement lecture.

There aren't many people working on the bioethics of IT-driven genomics, although much is being written in the popular literature. Most recently the fields have begun to set up conferences at which a lexicon is developed as well as a kind of institutional history of the ways in which all of the relevant fields (and there are many) have begun to converge. Ok a little plug: one of us has written a book about computational genomics and ethics, but only four people in his immediate family read it.

A symbol was paraded of the UK's problem establishing any kind of marrow registry enrollment among those of minority ethnic background. Asian families in particular do not often donate bone marrow.

Speaking of children in the UK who require special assistance, this piece in the News Telegraph chronicles the NHS' controversial decision to fund preimplantation diagnosis (and IVF) for families who seek to have a child in part to secure a donation. Covering the same story of Zain Hashmi, the piece highlights the problem for those of minority ethnic background.

China has a mess on its hands with DNA identification:

A non-regular investigation conducted recently in Zhejiang Province indicated that the requests for DNA identification of ones own children are rapidly increasing at a rate of 40 - 50% every year.

So George Annas isn't the only bioethicist playwright (although he is damn good): Christmas Carol has been adapted by Santina Maiolatesi of Chesapeake Research Review (along with Doris Baizley). No word on who will play Mini Tim.

Swiss News agency The Local discusses the off-label prescription of medications in children in the EU, in particular in Sweden, at Karolinska Institutet and elsewhere, noting a new European Commission regulation that requires that medical companies "begin testing medicines intended for children on children."

An Orlando judge has upheld the living will of a 73-year-old Florida man, after it was argued that his wife's durable power of attorney (a general, not a healthcare document) might trump the living will. His wife argued vehemently that she could not agree to disconnect his life support systems. The effect of the news is hard to judge, but it appears that we are in for more confusion about what these documents mean and how they relate to the legal system and to other legal instruments. Helpfully, the Florida legislature has not offered any specific instructions on how to interpret the role of any other documents, so the judge gets to make up new policy de novo!

Another piece on how sperm donors from Denmark are so hip.

Drug Policy Alliance offers its interpretation of the Monday Supreme Court deliberations on medical marijuana, which are to involve questions both of states' rights and of the scope of drug and medical policy.

Kangla Online reports that Imphal, India based Regional Institute of Medical Sciences has been admitted to the UNESCO bioethics world network. Imphal is in the northeast of India, a nation that is becoming an international bioethics powerhouse, in part due to the incredible focus on sex selection in the nation but also due to pretty innovative approaches to law and philosophy of medicine there.

You think you could be an unethical sort? The kind of person who would put the ring of Gyges to its most obvious use? Would you torture prisoners? You are human, so the answer is probably yes, or so new research on cruelty suggests.

Living Wills Do Not Work

The Hastings Center Report article on living wills' failure has drawn notice pretty much everywhere in the major media. Many others have made similar claims (e.g., here), but this piece is quite good and apparently timely as well.

Living wills have become one of bioethics' most embarrassing failures - an imaginative idea that has the support of the majority of bioethicists despite a total lack of support for their efficacy. From the start it has been clear to at least some of us that these documents just make things more confusing and litigious. An incredibly imaginative experiment, it is time to call living wills just that - an experiment, based on little data and thrust out into the medical community at large on the strength of a few prominent persistent vegetative state cases. Given the coverage of this most recent missive in the debate about how to handle patient wishes at the end of life, it will be interesting to see if hospital ethics committees continue to assert that living wills are a smart thing for patients to have.

It is high time for some legislative retooling of the Patient Self-Determination Act and supporting state legislation. The experiment has failed. Time to pull the plug.

Living Wills Have "Failed"

Here in the Miami Herarld is an account of a recent paper in the Hastings Center Report, which describes the failure of living wills- paper documents that list medical choices if you become terminal and incapacitated. A more helpful thing to do- although by far not foolproof- is designate a trusted surrogate to make your end-of-life choices. "Another choice that holds less legal weight but perhaps more influence: thoughtful conversations in advance with your regular doctors." -Dominic Sisti

A More Dramatic Case Than Schiavo - Major Story

From Art Caplan:

HOSPITAL, WIFE BATTLE OVER PATIENT'S LIFE A HEARING IN ORANGE WILL CONSIDER THE FATE OF A CLERMONT MAN WHO HAS A LIVING WILL. BY ANTHONY COLAROSSI | SENTINEL STAFF WRITER POSTED NOVEMBER 18, 2004

Hanford Pinette made his wishes clear in a living will: He never wanted to be kept alive by a machine.

Today Pinette, 73, lies in an Orlando hospital, where machines run his lungs and kidneys. Doctors see an unresponsive patient with no hope of recovery. Alice Pinette sees her husband of 53 years clinging to life.

Now the Clermont man's fate will be fought out in a courtroom in an unusual battle waged by Orlando Regional Healthcare System officials, who want to let him die, against Alice Pinette, who wants to keep him alive.

"They're just trying to pull the plugs," Alice Pinette, 73, said Wednesday, standing in the doorway of her home. "He still communicates with me, and I won't let them do it."

A hearing in the case is scheduled for Tuesday before Orange Circuit Court Judge Lawrence Kirkwood. The outcome could have broad implications on the enforcement of living wills, which are supposed to remove uncertainty about a patient's wishes in the event of a terminal illness and incapacity.

Paul Malley, president of the Tallahassee-based Aging With Dignity, a national organization that advises people about the benefits of living wills, said he could not recall a Florida hospital going to court to enforce a written living will over the wishes of a patient's family.

"It's definitely highly unusual for a hospital to bring up a case like this," Malley said. "Where this case is, is a real challenge. There may not be an easy answer here."

The argument doesn't center on Pinette's wishes, but whether he's sick enough to carry them out.

"He's all right," Alice Pinette said. "He's getting better, a little each day." David L. Evans, Orlando Regional Healthcare's lawyer, said the hospital maintains Pinette will not get better and is trying to abide by the patient's wishes.

"All we can do is come in and describe his medical condition and his competency," Evans said last week. "We're just doing what we feel we're legally obligated to do."

The Pinette matter is almost a reversal of the Terri Schiavo case.

Schiavo collapsed 14 years ago and is now in a Clearwater nursing home in what doctors call a progressive vegetative state. She is kept alive by a feeding tube and left no written directive of her wishes.

Schiavo's husband, Michael, contends his wife told him she would not want to be kept alive. Her parents, Bob and Mary Schindler, have battled Schiavo in court, arguing their daughter is aware of her surroundings.

The case sparked a national controversy when Gov. Jeb Bush and the Florida Legislature intervened to block a court order removing Terri Schiavo's feeding tube. The courts ruled in Michael Schiavo's favor and the case remains on appeal in Florida's courts.

The case has been cited as an example of why people need to write living wills.

Pinette, a Korean War veteran and government engineer who moved to Clermont in 1994 from Maryland to retire, wrote a living will in 1998 and assigned his wife to carry out his wishes, designating her as his "surrogate."

In the event of a terminal condition with no probability of recovery, Pinette stated: "I direct that life-prolonging procedures be withheld or withdrawn when the application of such procedures would serve only to prolong the process of dying."

Pinette stated in the will that he wanted "to die naturally" and receive medication only to "alleviate pain."

But Alice Pinette produced a durable power of attorney signed by her husband on the same date in 1998.

The power of attorney states her husband assigned her "to decide for me [Hanford Pinette] any matters regarding my health care, including, but not limited to, consenting to withhold or withdraw life-prolonging procedures."

Earlier this year, Pinette suffered congestive heart failure, his wife said. He has been hospitalized since February, according to the petition filed by Orlando Regional Healthcare, and is currently at Lucerne Hospital.

Despite Alice Pinette's assertions that her husband is not terminally ill, the hospital argues in court documents that Pinette's "renal system, respiratory system and cardiovascular system are all being supported by artificial means alone."

The petition also says Pinette is not competent to make his own decisions and is not likely to recover his mental capacity. The hospital's bioethics committee which reviews cases such as this also agreed to withdraw life support.

And two doctors -- Sanjay Muttreja and Juan Herran -- submitted affidavits that Pinette is terminally ill and has no "medical probability" of recovering.

"It is my opinion as Mr. Pinette's treating physician that Mr. Pinette meets the requirements of his living will," Muttreja said in his affidavit.

But Alice Pinette, who goes to the hospital daily, said her husband "still communicates with me."

She said Pinette squeezes her hand, shakes his head and has indicated that "he wants to go home."

That is proof enough to her that he's not terminally ill.

"There's a lot of people they say that about, and it's not true," she said. "They've been after me since July to put him down."

Robert Wilkins, a Maitland attorney whose practice includes living wills, said Alice Pinette is fighting an uphill battle.

"You should be able to control your own destiny and a surrogate shouldn't be able to override that," Wilkins said. "It really isn't her prerogative, it seems to me, to disregard that."

Wilkins said Alice Pinette's best hope is if her attorney can successfully argue that the living will is invalid.

Alice Pinette's attorney, William E. Ruffier, could not be reached for comment Wednesday.

Malley, the Aging With Dignity president, said the case may help others avoid this situation by talking about living wills and the responsibilities of the surrogate before it's too late.

The best person to be someone's surrogate, for instance, might not be his or her spouse, Malley said.

"It's a difficult situation," Malley said. "But it can be avoided with other families."