Seven years ago, he suffered a paralyzing stroke. Today he can only move his head, cannot speak and needs constant care.

And he wants to die.

To try to ensure that whoever ends his life won’t be jailed, the 57-year-old Nicklinson recently asked Britain’s High Court to declare that any doctor who gives him a lethal injection with his consent won’t be charged with murder. This week, the court will hold its first hearing on the case.

“Most people who want to die, who are physically able to do so, can lawfully commit suicide,” said Nicklinson’s lawyer, Saimo Chahal.

But that’s not the case for Nicklinson, who has “locked-in syndrome” — a condition in which a person’s body is paralyzed but mind intact.

Under U.K. law, anyone who helps Nicklinson die could be charged with murder, even if they are carrying out his wishes. A murder charge has a mandatory life sentence, regardless of the motive or circumstances.

No one suspected of aiding a loved one’s suicide has been charged with such a crime in Britain in recent years. But Nicklinson doesn’t want to take any chances. Instead he wants to change the legal definition of murder to exclude euthanasia, arguably a long shot.

Emily Jackson, a medical law expert at London’s School of Economics, said Nicklinson may have a plausible case. “He is making a very interesting argument,” she said.

Euthanasia is legal in the Netherlands but requires a long-term relationship between doctors and patients, a rule that excludes most foreigners. Assisted suicide is legal in Switzerland, including for foreigners, but Nicklinson does not want to go there to die.

Nicklinson argues that British law hinders his right to “private and family life” — guaranteed by the European Convention on Human Rights — on the grounds that being able to choose how to die is a matter of personal autonomy.

“He argues that it’s unfair on him and that a humane legal system would enable somebody in his circumstances, with considerable safeguards, to get help from a doctor to exercise a right, which he has in theory, but is deprived of in practice,” Chahal said.

The Ministry of Justice has applied to dismiss Nicklinson’s suit since it could involve changing the law — which must be done by Parliament, not the High Court.

Nicklinson communicates mostly by using a computer that detects his blinking. In a statement, he described his life as “dull, miserable, demeaning, undignified and intolerable.”

He has refused since 2007 to take any life-prolonging drugs recommended by doctors, including heart drugs or blood thinners. He only takes medicines to make himself more comfortable, such as those to reduce muscle spasms. His wife, Jane, a trained nurse, said he could be at risk of another stroke or a heart attack.

Jane described her husband as “a real alpha male” who was very active before his stroke. “He was tall, dark and handsome,” she says of the night they met on a blind date in Dubai. The two later also lived in Hong Kong, Malaysia and Britain with their two daughters. Nicklinson chaired a sports club that ran rugby events in the United Arab Emirates, mixing with elite players and officials.

“It was a dream come true for him,” his wife said.

Jane said she and their two grown daughters didn’t initially agree with her husband’s choice to die. “It was very upsetting and obviously it’s not what we want, but it’s what he wants and it’s his life,” she said.

Nicklinson spends most of his days at a computer he controls by blinking, writing emails and surfing the web. Jane said he rarely leaves his room in their bungalow in rural Wiltshire, southwest England, except to watch television in the evenings. He’s also writing his memoirs.

It’s amazing what he remembers,” his wife said. “His mind is completely unaffected.”

Like the renowned physicist Stephen Hawking, who recently turned 70, Nicklinson has not lost any of his intellectual capacities. Hawking has Lou Gehrig’s disease, a degenerative condition that kills most people within a few years. He has repeatedly said he doesn’t think about his physical limitations, which haven’t prevented him from revolutionizing the understanding of black holes and the origins of the universe.

A recent British commission headed by a former justice secretary concluded there was a strong case for allowing assisted suicide under strict criteria. The commission was set up and funded by campaigners who want the current law changed. The report did not support euthanasia and recommended assisted suicide only be allowed for terminally ill people, which would exclude Nicklinson.

In 2009, the British government’s top prosecutor said people who helped terminally ill relatives and friends die were unlikely to be charged if they acted out of compassion. From 2009 to 2011, 40 cases of people suspected of helping loved ones die were reported to the government prosecutor; none was charged.

In 2002, the Netherlands became the first country to legalize euthanasia, allowing doctors to end the lives of patients whose suffering is “unbearable and hopeless” — not just those with terminal illnesses. In recent years, the country’s rates of euthanasia and physician-assisted suicide have risen slightly, but still account for less than 3 percent of all deaths.

Switzerland allows doctors to prescribe a fatal dose of medicine for patients to take themselves. Since 2001, more than 160 Britons have traveled to the Dignitas clinic, near Zurich, to die.

Nicklinson considered going to Switzerland, but his wife said he decided against it for several reasons, including the approximately 6,500 pound ($10,000) cost. Nicklinson is currently receiving legal aid from the government to cover most of his lawyer’s fees.

Euthanasia is also legal in Belgium, Luxembourg and the state of Oregon in the United States.

Critics of euthanasia say the U.K. should focus more on improving care for the chronically and terminally ill instead of legislating mercy killing.

“I’m massively sympathetic to (Nicklinson’s) situation, but I don’t think we should change the law when it will impact hundreds of thousands of other people,” said Dr. John Wiles, chairman of Care Not Killing, an alliance that opposes euthanasia. He warned that legalizing euthanasia might worsen treatment of elderly people and the terminally ill.

Wiles doubted enough safeguards could ever be in place. “However narrow you try to make it, in principle, we would be allowing the killing of other members of society for the first time,” he said. “If we change the law, we’ll be saying to people, ‘If you don’t like the care you’re getting, you can just end it.’”

The British Medical Association also opposes any changes that would permit assisted suicide or euthanasia. While patients have the right to their medical records, the group advises doctors to refuse to share such reports if they suspect the information will be used to commit assisted suicide abroad.

Nicklinson’s wife, Jane, said her husband simply wants the right to choose when to end his life. She said he began asking to die as soon as he could start communicating after his stroke, once he realized he wouldn’t improve.

“I’ve tried many times to change his mind, but he is adamant to see this through,” she said.

The first, to introduce a complete ban on the practice, looks set to be defeated.

But the second, which proposes limiting assisted suicide to Zurich residents only, could get more support.

The Swiss are uneasy that so many foreign citizens are coming to Switzerland because assisted suicide remains illegal in their own countries.

In Switzerland the individual right to decide is hugely important, says the BBC’s Imogen Foulkes in Geneva.

The system of direct democracy, in which the people vote on all major political decisions, is a sign of that, she says.

So too is the fact that assisted suicide – or as the Swiss see it, the right to choose when and how to die – has been legal for decades, our correspondent adds.

While opinion polls indicate a majority of Swiss remain in favour of assisted suicide, they also suggest that 66% are against what has become known as suicide tourism.

Bernhard Sutter, of Switzerland’s biggest assisted suicide organisation Exit, says Europe is simply exporting its moral dilemmas.

“We cannot solve the dying problems of the rest of Europe,” he said. “And we think it is very sad that very ill people have to travel thousands of kilometres to go to a liberal country to die there.

“These other countries should solve their own problems with dying people, so we would be happy if Germany, or Great Britain, would change their laws.”

Already Exit will only assist those who are permanently resident in Switzerland – saying the process takes time, and much counselling for both patients and relatives.

Zurich’s vote on the issue will be watched very closely by the Swiss government, which is currently revising Switzerland’s federal laws on assisted suicide.

The background to this important judgement is in Switzerland. A 57-year-old Swiss national, Ernst G. Haas, felt that he could no longer live a dignified life after battling a serious bipolar affective disorder for 20 years. He twice attempted suicide, but then hit upon the idea of using sodium pentobarbital, a prescription-only drug. But no psychiatrist would prescribe it for him. He then asked the Swiss government for permission to obtain sodium pentobarbital without a prescription. He argued that Article 8 imposed on the State a “positive obligation” to create the conditions for suicide to be committed without the risk of failure and without pain.

Various Swiss courts refused. Mr Haas then asked 170 different psychiatrists whether they could examine him with a view to getting his hands on some sodium pentobarbital. They all refused.

As a result, Mr Haas invoked Article 8 of the European Convention on Human Rights, which guarantees a right to privacy, and sued the Swiss government in the European Court of Human Rights.

On January 20, the Court handed down its decision. It acknowledged that there does appear to be a right to suicide implied in Article 8. This has been strengthened by the 2002 Pretty case, in which the Court approved the right of a British woman to kill herself if she found life undignified and distressing.

However, Article 2 of the Convention also guarantees the right to life. Most member states give the right to life more weight than the right to suicide.

The Court pointed out that a prescription system is supposed to protect vulnerable people from making hasty decisions and to prevent abuse. That was all the more true in a country such as Switzerland, where assisted suicide is legal. It also declared that the risk of abuse inherent in a system which facilitated assisted suicide can not be underestimated. That is why a prescription from a doctor and a psychiatric examination to ensure free will are proper safeguards.

For the original Human Rights Europe article visit:
http://www.humanrightseurope.org/2011/01/court-judgement-on-swiss-assisted-suicide-row/

Under the new policy, outlined in a Medicare regulation, the government will pay doctors who advise patients on options for end-of-life care, which may include advance directives to forgo aggressive life-sustaining treatment.

Congressional supporters of the new policy, though pleased, have kept quiet. They fear provoking another furor like the one in 2009 when Republicans seized on the idea of end-of-life counseling to argue that the Democrats’ bill would allow the government to cut off care for the critically ill.

The final version of the health care legislation, signed into law by President Obama in March, authorized Medicare coverage of yearly physical examinations, or wellness visits. The new rule says Medicare will cover “voluntary advance care planning,” to discuss end-of-life treatment, as part of the annual visit. Under the rule, doctors can provide information to patients on how to prepare an “advance directive,” stating how aggressively they wish to be treated if they are so sick that they cannot make health care decisions for themselves.

While the new law does not mention advance care planning, the Obama administration has been able to achieve its policy goal through the regulation-writing process, a strategy that could become more prevalent in the next two years as the president deals with a strengthened Republican opposition in Congress. In this case, the administration said research had shown the value of end-of-life planning.

“Advance care planning improves end-of-life care and patient and family satisfaction and reduces stress, anxiety and depression in surviving relatives,” the administration said in the preamble to the Medicare regulation, quoting research published this year in the British Medical Journal.  The administration also cited research by Dr. Stacy M. Fischer, an assistant professor at the University of Colorado School of Medicine, who found that “end-of-life discussions between doctor and patient help ensure that one gets the care one wants.” In this sense, Dr. Fischer said, such consultations “protect patient autonomy.”

Opponents said the Obama administration was bringing back a procedure that could be used to justify the premature withdrawal of life-sustaining treatment from people with severe illnesses and disabilities.

Section 1233 of the bill passed by the House in November 2009 — but not included in the final legislation — allowed Medicare to pay for consultations about advance care planning every five years. In contrast, the new rule allows annual discussions as part of the wellness visit.

Elizabeth D. Wickham, executive director of LifeTree, which describes itself as “a pro-life Christian educational ministry,” said she was concerned that end-of-life counseling would encourage patients to forgo or curtail care, thus hastening death.

“The infamous Section 1233 is still alive and kicking,” Ms. Wickham said. “Patients will lose the ability to control treatments at the end of life.”

Several Democratic members of Congress, led by Representative Earl Blumenauer of Oregon and Senator John D. Rockefeller IV of West Virginia, had urged the administration to cover end-of-life planning as a service offered under the Medicare wellness benefit. A national organization of hospice care providers made the same recommendation.

Mr. Blumenauer, the author of the original end-of-life proposal, praised the rule as “a step in the right direction.”

“It will give people more control over the care they receive,” Mr. Blumenauer said in an interview. “It means that doctors and patients can have these conversations in the normal course of business, as part of our health care routine, not as something put off until we are forced to do it.”

After learning of the administration’s decision, Mr. Blumenauer’s office celebrated “a quiet victory,” but urged supporters not to crow about it.

“While we are very happy with the result, we won’t be shouting it from the rooftops because we aren’t out of the woods yet,” Mr. Blumenauer’s office said in an e-mail in early November to people working with him on the issue. “This regulation could be modified or reversed, especially if Republican leaders try to use this small provision to perpetuate the ‘death panel’ myth.”

Moreover, the e-mail said: “We would ask that you not broadcast this accomplishment out to any of your lists, even if they are ‘supporters’ — e-mails can too easily be forwarded.”

The e-mail continued: “Thus far, it seems that no press or blogs have discovered it, but we will be keeping a close watch and may be calling on you if we need a rapid, targeted response. The longer this goes unnoticed, the better our chances of keeping it.”

In the interview, Mr. Blumenauer said, “Lies can go viral if people use them for political purposes.”

The proposal for Medicare coverage of advance care planning was omitted from the final health care bill because of the uproar over unsubstantiated claims that it would encourage euthanasia.

Sarah Palin, the 2008 Republican vice-presidential candidate, and Representative John A. Boehner of Ohio, the House Republican leader, led the criticism in the summer of 2009. Ms. Palin said “Obama’s death panel” would decide who was worthy of health care. Mr. Boehner, who is in line to become speaker, said, “This provision may start us down a treacherous path toward government-encouraged euthanasia.” Forced onto the defensive, Mr. Obama said that nothing in the bill would “pull the plug on grandma.”

A recent poll by the Kaiser Family Foundation suggests that the idea of death panels persists. In the September poll, 30 percent of Americans 65 and older said the new health care law allowed a government panel to make decisions about end-of-life care for people on Medicare. The law has no such provision.

The new policy is included in a huge Medicare regulation setting payment rates for thousands of services including arthroscopy, mastectomy and X-rays.

The rule was issued by Dr. Donald M. Berwick, administrator of the Centers for Medicare and Medicaid Services and a longtime advocate for better end-of-life care.

“Using unwanted procedures in terminal illness is a form of assault,” Dr. Berwick has said. “In economic terms, it is waste. Several techniques, including advance directives and involvement of patients and families in decision-making, have been shown to reduce inappropriate care at the end of life, leading to both lower cost and more humane care.”

Ellen B. Griffith, a spokeswoman for the Medicare agency, said, “The final health care reform law has no provision for voluntary advance care planning.” But Ms. Griffith added, under the new rule, such planning “may be included as an element in both the first and subsequent annual wellness visits, providing an opportunity to periodically review and update the beneficiary’s wishes and preferences for his or her medical care.”

Mr. Blumenauer and Mr. Rockefeller said that advance directives would help doctors and nurses provide care in keeping with patients’ wishes.

“Early advance care planning is important because a person’s ability to make decisions may diminish over time, and he or she may suddenly lose the capability to participate in health care decisions,” the lawmakers said in a letter to Dr. Berwick in August.

In a recent study of 3,700 people near the end of life, Dr. Maria J. Silveira of the University of Michigan found that many had “treatable, life-threatening conditions” but lacked decision-making capacity in their final days. With the new Medicare coverage, doctors can learn a patient’s wishes before a crisis occurs.

For example, Dr. Silveira said, she might ask a person with heart disease, “If you have another heart attack and your heart stops beating, would you want us to try to restart it?” A patient dying of emphysema might be asked, “Do you want to go on a breathing machine for the rest of your life?” And, she said, a patient with incurable cancer might be asked, “When the time comes, do you want us to use technology to try and delay your death?”

Keith Olbermann opened his emotional Special Comment on health care Wednesday with the story of his father’s six-month-long hospitalization suffering through a colon removal, pneumonia, kidney failure, liver failure, and many infections.  

After a particularly difficult week, Olbermann said he went into his father’s hospital room to find him “thrashing his head back and forth” and mouthing the word “Help.”  “It was just too much for my father,” Olbermann said. “‘Stop this,’ he mouths. ‘Stop, stop, stop.’”

Olbermann said he resorted to gallows humor, asking his father, “What, you want me to smother you with a pillow?” And his father responded, mouthing, “Yes, kill me.”

“And as I left the hospital that night, the full impact of the last six months washed over me,” Olbermann said. “That conversation, that one, was what these ghouls who are walking into Blair House tomorrow morning called death panels. Your right to have that conversation with a doctor. Not the government, but a doctor. And your right to have insurance pay for his expertise on what your options are when dad says ‘Kill me’ or what your options are when dad is in a coma and can’t tell you a damn thing.”

Olbermann then laid into those who spread fear about death panels.

“That, right now, is the legacy of the protests of these subhumans who get paid by the insurance companies, who say these things for their own political gain, or like that one fiend, for money,” Olbermann said. “Betsy McCaughey told people tht this conversation about life and death and relief and release…she told people that’s a death panel and she did that for money! It’s a life panel. A life panel. It can save the pain of the patient and the family. It’s the difference between you guessing what happens next and you being informed about what probably will. And that’s the difference between you sleeping at night or second-guessing and third-guessing and thirtieth-guessing yourself.”

“It’s a life panel, and damn those who call it otherwise to hell!” he said.

Olbermann closed the comment with news that his father has not awoken since Friday, and that it’s now possible he never recovers.

“So considering that if he does not recover you will not see me here for a while, I have some requests,” he said. “Please, have this conversation with your loved ones. Don’t wait. Do it now. It’s tough. It acknowledges death, and it also narrows the gray area you and they will face from infinity to a foot wide. It is my greatest comfort right now and I want it to be yours. And to the politicians who go into Blair House tomorrow, for that summit, I have some requests as well. Leave your egos at the door. I want, I demand that you give everybody in this country a chance at the care my father has gotten. And I demand that you enact this most generous and kind aspect of the reform proposed, the right to bill the damned insurance company for the conversation about what to do when the time comes. The life panel.”

Ray Gosling was arrested on Tuesday after he told a BBC documentary that he smothered the man. The admission and investigation has added to an already heated public debate in Britain on the issue of assisted suicide or euthanasia.

Dr Evan Harris is a UK parliamentarian and a member of the British Medical Association’s Medical Ethics Committee. Dr Peter Saunders is General Secretary of pressure group ‘Care Not Killing’. The BBC’s Roger Hearing brought them together and began by asking Dr Saunders why the issue was so prominent now.

Listen to BBC broadcast here which explains the case and the differences between murder, euthanasia, and assisted suicide.

Rom Houben, trapped in his paralysed body after a car crash, described his real-life nightmare as he screamed to doctors that he could hear them – but could make no sound.

‘I screamed, but there was nothing to hear,’ said Mr Houben, now 46, who doctors thought was in a persistent vegatative state. ‘I dreamed myself away,’ he added, tapping his tale out with the aid of a computer.

Doctors used a range of coma tests before reluctantly concluding that his consciousness was ‘extinct’.

But three years ago, new hi-tech scans showed his brain was still functioning almost completely normally. Mr Houben described the moment as ‘my second birth’. Therapy has since allowed him to tap out messages on a computer screen.

Mr Houben said: ‘All that time I just literally dreamed of a better life. Frustration is too small a word to describe what I felt.’ His case has only just been revealed in a scientific paper released by the man who ’saved’ him, top neurological expert Dr Steven Laureys.

‘Medical advances caught up with him,’ said Dr Laureys, who believes there may be many similar cases of false comas around the world. The disclosure will also renew the right-to-die debate over whether people in comas are truly unconscious.

Mr Houben, a former martial arts enthusiast, was paralysed in 1983. Doctors in Zolder, Belgium, used the internationally accepted Glasgow Coma Scale to assess his eye, verbal and motor responses. But each time he was graded incorrectly.

Only a re-evaluation of his case at the University of Liege discovered that he had lost control of his body but was still fully aware of what was happening.

He is never likely to leave hospital, but as well as his computer he now has a special device above his bed which lets him read books while lying down.

Mr Houben said: ‘I shall never forget the day when they discovered what was truly wrong with me – it was my second birth.

‘I want to read, talk with my friends via the computer and enjoy my life now that people know I am not dead.’

Dr Laureys’s new study claims that patients classed as in a vegetative state are often misdiagnosed.

‘Anyone who bears the stamp of “unconscious” just one time hardly ever gets rid of it again,’ he said.

The doctor, who leads the Coma Science Group and Department of Neurology at Liege University Hospital, found Mr Houben’s brain was still working by using state-of-the-art imaging.

He plans to use the case to highlight what he considers may be similar examples around the world.

Dr Laureys said: ‘In Germany alone each year some 100,000 people suffer from severe traumatic brain injury.

‘About 20,000 are followed by a coma of three weeks or longer. Some of them die, others regain health.

‘But an estimated 3,000 to 5,000 people a year remain trapped in an intermediate stage – they go on living without ever coming back again.’

Supporters of euthanasia and assisted suicide argue that people who have lain in persistent vegetative states for years should be given the opportunity to have crucial medical support withdrawn because of the ‘indignity’ of their condition.

But there have been several cases in which people judged to be in vegetative states or deep comas have recovered.

Twenty years ago, Carrie Coons, an 86-year-old from New York, regained consciousness after a year, took small amounts of food by mouth and engaged in conversation.

Only days before her recovery, a judge had granted her family’s request for the removal of the feeding tube which had been keeping her alive.

In the UK in 1993, doctors switched off the life support system keeping alive Tony Bland, a 22-year- old who had been in a coma for three years following the Hillsborough disaster.

Dr Laureys was not available for comment yesterday and it is not clear why he thought Mr Houben should have the hi-tech screening when so many years had passed.

“Dad’s not doing very well,” he said. “If you want to see him before he dies, you’d better fly up here.”

I didn’t believe him. At age 88, my dad had weathered crises before, and he had told me many times that he didn’t want to die and wasn’t ready to die. For a decade, my saintly mother had nursed him as he progressively declined. But always before, during his crises, he had rallied.

My father was the son of a lawyer. After one brief year in the undergraduate medical curriculum at Washington and Lee University, he switched to law, where he earned his degree. After a stint in the U.S. Army in World War II, he ended up in the Patent and Trademark Office, serving 30 years as a trademark examiner. He and my mother grew up in the small farming town of Woodstock in the Shenandoah Valley, where their grandparents were farmers. After the war, they moved to Montgomery County, Md., a suburb of Washington, D.C., and began a new, big-city life, having five children.

To my regret, my dad and I hadn’t talked about his dying. My father had always feared death, but had met this fear abstractly. From the age of 5, I remember Victor Frankel’s “Man’s Search for Meaning” and Ernest Becker’s “The Denial of Death” near his reading chair. Over the next decades, he accumulated more books like these.

So after his 50 years of pondering death, I expected some wisdom from him about how he would face his own death. I hoped it would, in turn, help me face my own. Maybe every adult child hopes for this, but Dad and I never had that conversation.

On the other hand, his obsession and those books surely had something to do with my decision to get a Ph.D. in philosophy. And so with my ending up in bioethics, whose primordial issue is death and dying.  After I had taught in a medical school for 25 years, my father’s last illness occurred. It also came to pass that my father’s dying taught me wisdom about dying, but of a different sort than I’d expected.

In bioethics, philosophers for decades had argued the distinction between killing and letting die. James Rachels famously attacked this distinction in a 1975 article in the New England Journal of Medicine.

Whereas legally, it matters in most states whether physicians cause someone’s death or fail to aid a patient in distress, bioethicists criticize the distinction, claiming the difference carries no moral weight. For if physicians intend to kill a patient and the result is death, does it matter if physicians did something active or merely omitted normal treatment in life-or-death contexts? Either way, death was intended and death occurred.

But I oversimplify. Not all bioethicists thought this way. Indeed, I searched the literature once and turned up hundreds of articles, graduate theses and books about the distinction. (Thanks to Rachels for creating a small, cottage industry in academe.)

But I believed the distinction didn’t matter until that singular day when my father’s doctor called from the Hebrew National Home in Washington, D.C., where my father spent his last days. The doctor said dad’s condition had worsened and the only stopgap was a feeding tube; otherwise, Dad would soon die.

Because I was a medical ethicist, my family had — perhaps incorrectly — left this decision to me. I talked to my father by phone: He could barely talk, but said he did not want to die, was not ready to die. Patel said my father would soon be too sedated to talk. And indeed, short as it was, that was my last conversation with my father.

So I allowed the feeding tube. After all, it was my father, and he didn’t want to die.

About an hour after I made that decision, a nurse called: “Aren’t you the medical ethicist? Are you sure you want to put your father on a feeding tube? Do you realize what that means for him and your family?”

And, of course, I had forgotten what it meant, because the issue was no longer the abstract one, but the death of my father. I agonized that afternoon. I talked to my relatives and then, reluctantly, called to rescind my decision. Don’t put in a feeding tube; let him die. I said I was packing and on my way.

My father’s death was philosophically a hard death. He didn’t want to die, and he wasn’t ready to die. Yet, he was getting worse and worse.

The next morning, I was still feeling ambivalent about my decision when the doctor called to say my father had just died.

In that moment in Alabama, 1,000 miles away, enormous guilt wracked me: I had killed my father. I had made a decision resulting in the death of a man I loved who didn’t want to die, and my dad’s consciousness had ceased to exist. No conversation between us would ever occur again.

For the first time, I felt why some physicians find it so hard to remove patients from respirators and why decisions to remove feeding tubes cause such guilt in families.

Intellectually, lest terminal patients suffer in dying in hideous ways, I know someone must make these decisions. One study says 80 percent of deaths in America involve a decision to limit some kind of medical care.

Looking back, I understand I made the right decision, but I am also now wiser. Perhaps, as my wife, Pat, says, my emphasis on withdrawing or not withdrawing the feeding tube merely intellectualized my real feelings of helplessness and loss (after all, I am my father’s son). Looking back, too, I understand that ending the life of one you love tears you apart. Nothing prepares you for it — not even 25 years in bioethics. And you always want one more conversation with your dad.

Gregory Pence, Ph.D., is a professor of philosophy and director of the Early Medical Student Acceptance Program at UAB. Web site: www.uab.edu/philosophy/faculty/pence/

By Special to The Birmingham News  November 15, 2009, 5:39AM  By GREGORY PENCE

Ten years after the notorious Michigan doctor was ultimately jailed for killing a patient — one of 130 he helped die through lethal injection — Philip Nitschke, a new renegade physician, is spreading the gospel of assisted suicide — and he’s coming to the United States next month.

Nitschke is the 61-year-old Australian founder and director of the pro-assisted-suicide organization, Exit International. (Motto: “A Peaceful Death Is Everybody’s Right.”)

Based in Melbourne, Australia, the vocal advocacy group has gone beyond the legislative projects of other right-to-die organizations, who want to decriminalize euthanasia, to develop an array of educational tools for people considering ending their lives on their own terms.

These include public meetings (”free and open to all”), “ExiTutorials” (formerly called “Workshops”), private home visits, and, most recently, an “Exit kit,” which is best described as a do-it-yourself lab test for people who wish to commit suicide but want to make sure they do it right.

The battle over health care reform may be raging too intensely for Americans to notice right now. But while end-of-life questions are distorted into wild and ominous claims that “death panels” will “pull the plug on Grandma,” elsewhere in the world, from Australia to Canada, the right-to-die debate is heating up.

It’s not the same debate it used to be. Reuters reported this spring: “It used to be an issue just for the terminally ill. Now, as populations around the world age, governments are increasingly being confronted with the taboo idea of dying as something people can volunteer to do.”

Foolproofing Sucide?

At $50 a pop, the Exit kit was developed to help people who have already procured lethal drugs — specifically, the barbituate Nembutal, which is sold over the counter in Mexico — to ensure that they are still potent enough to kill after spending time in storage.

Time magazine explained earlier this year: “When someone with a terminal illness decides to end his or her life by overdosing on barbiturates, they may hope the drugs will lull them into a peaceful and permanent sleep. But if the drugs have passed their expiration date or lack a sufficiently lethal concentration, the would-be suicide victim may actually survive — risking an array of complications, including coma, reduced physical functioning and the opprobrium of disapproving friends and family.”

“Now, in an effort to provide certainty to those contemplating suicide, one of the world’s leading euthanasia advocates plans to sell barbiturate-testing kits to confirm that deadly drug cocktails are, in fact, deadly.”

Exit International also sells a book ($35) called The Peaceful Pill Handbook, a sort of suicide tutorial that, in addition to defending suicide as a legitimate choice that can be made by lucid people (whether they are terminally ill or simply “tired of life”), provides readers with eight ways to kill themselves. (The group boasts a research-and-development arm, which is focused on coming up with “various end-of-life approaches that are reliable, peaceful and dignified.”)

Some of these methods are spotlighted on Exit International’s Web site through an assortment of (admittedly weird and, really, pretty creepy) instructional videos featuring a grandmotherly “nurse educator” named Betty, who gives short, cheerful lessons on the finer points of suicide, all to a jaunty instrumental soundtrack.

(In one, titled “Doing It With Betty,” she shows you how to make an “Exit Bag,” which consists of a plastic oven bag with a drawstring. “What I usually do is just reinforce with two piece of tape …” she says, as if death by self-asphyxiation is a hobby of hers.)

The videos carry the disclaimer: “This Material Is Not Suitable for Children or Anybody Suffering From Depression or Mental Illness.”

In March, the Australian government, which has banned The Peaceful Pill Handbook, also banned two of the “Betty” videos, prompting an angry response from Betty.

“My generation has lived through a lot, including WW II,” said 78-year-old Betty Peters, an Exit International volunteer. “We, more than most people, know about death, and many of us don’t want to suffer the pain and indignity of illness or a prolonged period as a vegetable in a nursing home.”

A former physician, Philip Nitschke has been working on end-of-life tools for years. In 1996, he achieved fame by helping four people kill themselves through a computerized lethal-injection system he called the Deliverance Machine. At the time, it was legal under Australia’s short-lived Rights of the Terminally Ill Act.

As he described in the introduction to The Peaceful Pill Handbook, “the computer presented a short series of questions” before administering the lethal injection:

1. Are you aware that if you go ahead to the last screen and press the “yes” button you will be given a lethal dose of medication and die?

2. Are you certain you understand that if you proceed and press the “yes” button on the next screen you will die?

3. In 15 seconds you will be given a lethal injection … press “yes” to proceed.

“After pressing the button for the third time, the machine started up and delivered to each patient a lethal dose of the barbiturate Nembutal,” he wrote. “At the time of their choosing, the Deliverance machine enabled those four people to die, peacefully and with dignity.”

Nitschke recalls the inevitable aftermath of these physician-assisted deaths as the end of a promising era when people had the option of “dying with dignity.”

But the Rights of the Terminally Ill Act was repealed and replaced within nine months of its passage, at which point Nitschke gave up medicine and devoted himself full time to the fight for assisted suicide.

Like other assisted-suicide proponents, Nitschke considers the “right to choose” a human-rights issue, as well as one of free speech. “It is because of … deliberate attempts by the State to further restrict, control and censor end-of-life information that The Peaceful Pill Handbook has been written,” he said.

‘Death With Dignity’ vs. U.S. Healthcare?

It’s difficult to untangle the layers of controversy surrounding the topic of physician-assisted euthanasia in the U.S., from alarm at “playing God” to a more general fear of confronting death, to the very real question of how it would work logistically to decriminalize it.

As a recent Reuters report put it, the issue is “littered with ethical red flags.” But it’s a topic that is not going away. As aging Americans face the prospect of making difficult end-of-life decisions, two states (Washington and Oregon) have already passed “Death With Dignity” legislation to allow doctors to prescribe lethal doses of barbiturates to patients who are terminally ill.

Although the measures have not led to a spike in suicides as some predicted, they have nonetheless been controversial. In Oregon, the Death with Dignity Act has its own Web site that takes pains to distinguish between its law and still-existing laws that ban euthanasia. (”Euthanasia is a different procedure for hastening death,” according to the FAQ section. “In euthanasia, a doctor injects a patient with a lethal dosage of medication. In the Act, a physician prescribes a lethal dose of medication to a patient, but the patient — not the doctor — administers the medication. Euthanasia is illegal in every state in the U.S., including Oregon.”)

Some might argue that it is a distinction without a difference; and no doubt the debate will heat up when Nitschke comes to North America to peddle Exit International’s philosophies and products, which he’s scheduled to do in November.

A visit to Canada scheduled at the same time is already generating controversy; a planned workshop at the Vancouver Public Library was recently canceled over concerns that it would violate Canadian law, which prohibits the encouragement of suicide. (Nitschke disputes that the workshops actually encourage suicide.)

Proponents of assisted euthanasia often point to religion and all its moral strictures as the root behind this kind of controversy — and in one sense they’re right. Their real foes are the doctors and nurses who provide hospice care — a movement with a strong religious tradition.

Dr. Helen Watt, director at Linacre Center for Healthcare Ethics in London, told Retuers, “It is good holistic palliative care, not medical killing which is the answer to the real distresses of so many people when contemplating natural death.”

This echoes the belief of Cicely Saunders, the pioneering British doctor who founded the modern-day hospice movement. Saunders, who was deeply religious, died in 2005, but her firm opposition to laws allowing physician-assisted suicide lives on.

“Freedom to take one’s life as a private matter is very different from a legalized ‘right to die,’ which all too easily can lead to a presumed duty to die,” Saunders argued in a letter to the London Times in 1991. “All those who work in palliative medicine know well how most requests for a speedy end to life fade away once good care has been instituted. … To suggest killing before we have done all we can in caring would, to me, be the wrong answer to the present question.”

That present question, more than 15 years later, is as relevant as ever. Yet, as we have seen all too clearly in the past several weeks, in the United States, even the most superficial changes in our for-profit health care system have proved polarizing beyond reason; a meaningful attempt to address the fraught topic of end-of-life care seems nearly impossible.

With another round of controversy over the “right to die” on the horizon, hysteria over so-called death panels must be abandoned in favor of a less distorted, more empathetic discussion over the right to health care — in all its forms.

Liliana Segura is an AlterNet staff writer and editor of Rights & Liberties and World Special Coverage. http://twitter.com/LilianaSegura

© 2009 Independent Media Institute. All rights reserved.
View this story online at: http://www.alternet.org/story/143059/

[BBC] The advice allows food and fluids to be withdrawn from patients, who are then continuously sedated, if they are judged to be close to death.

In a letter to the Daily Telegraph the six doctors and campaigners criticise a “tick-box approach” to care. The government says the guidance helps deliver high quality care for people.

Among the signatories on the letter are PH Millard, Emeritus Professor of Geriatrics at the University of London and Dr Anthony Cole, chairman of the Medical Ethics Committee.

Dr Peter Hargreaves, a consultant in palliative medicine, Dr David Hill, fellow of the Faculty of Anaesthetists of the Royal College of Surgeons, Dr Elizabeth Negus, a lecturer at Barking University, and Dowager Lady Salisbury, chairman of Choose Life, were the other signatories.

Their letter says the new treatment pattern of palliative care, based on experience at a Liverpool hospice is being rolled out into hospitals and nursing homes.

“If you tick all the right boxes in the Liverpool Care Pathway, the inevitable outcome of the consequent treatment is death,” they write.

“As a result, a nationwide wave of discontent is building up, as family and friends witness the denial of fluids and food to patients.”

A Department of Health spokesman said they are investing £286 million over the two years to help improve end of life care.

He added: “The Liverpool Care Pathway is an established and recommended tool that provides clinicians with an evidence-based framework to help delivery of high quality care for people at the end of their lives.

“It has been recommended in the Supportive and Palliative Care Guidance issued by the National Institute for Health and Clinical Excellence.”