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.

[Zocalopublicsquare] Years ago, Charlie, a highly respected orthopedist and a mentor of mine, found a lump in his stomach. He had a surgeon explore the area, and the diagnosis was pancreatic cancer. This surgeon was one of the best in the country. He had even invented a new procedure for this exact cancer that could triple a patient’s five-year-survival odds—from 5 percent to 15 percent—albeit with a poor quality of life. Charlie was uninterested. He went home the next day, closed his practice, and never set foot in a hospital again. He focused on spending time with family and feeling as good as possible. Several months later, he died at home. He got no chemotherapy, radiation, or surgical treatment. Medicare didn’t spend much on him.

It’s not a frequent topic of discussion, but doctors die, too. And they don’t die like the rest of us. What’s unusual about them is not how much treatment they get compared to most Americans, but how little. For all the time they spend fending off the deaths of others, they tend to be fairly serene when faced with death themselves. They know exactly what is going to happen, they know the choices, and they generally have access to any sort of medical care they could want. But they go gently.

Of course, doctors don’t want to die; they want to live. But they know enough about modern medicine to know its limits. And they know enough about death to know what all people fear most: dying in pain, and dying alone. They’ve talked about this with their families. They want to be sure, when the time comes, that no heroic measures will happen—that they will never experience, during their last moments on earth, someone breaking their ribs in an attempt to resuscitate them with CPR (that’s what happens if CPR is done right).

Almost all medical professionals have seen what we call “futile care” being performed on people. That’s when doctors bring the cutting edge of technology to bear on a grievously ill person near the end of life. The patient will get cut open, perforated with tubes, hooked up to machines, and assaulted with drugs. All of this occurs in the Intensive Care Unit at a cost of tens of thousands of dollars a day. What it buys is misery we would not inflict on a terrorist. I cannot count the number of times fellow physicians have told me, in words that vary only slightly, “Promise me if you find me like this that you’ll kill me.” They mean it. Some medical personnel wear medallions stamped “NO CODE” to tell physicians not to perform CPR on them. I have even seen it as a tattoo.

To administer medical care that makes people suffer is anguishing. Physicians are trained to gather information without revealing any of their own feelings, but in private, among fellow doctors, they’ll vent. “How can anyone do that to their family members?” they’ll ask. I suspect it’s one reason physicians have higher rates of alcohol abuse and depression than professionals in most other fields. I know it’s one reason I stopped participating in hospital care for the last 10 years of my practice.

How has it come to this—that doctors administer so much care that they wouldn’t want for themselves? The simple, or not-so-simple, answer is this: patients, doctors, and the system.

To see how patients play a role, imagine a scenario in which someone has lost consciousness and been admitted to an emergency room. As is so often the case, no one has made a plan for this situation, and shocked and scared family members find themselves caught up in a maze of choices. They’re overwhelmed. When doctors ask if they want “everything” done, they answer yes. Then the nightmare begins. Sometimes, a family really means “do everything,” but often they just mean “do everything that’s reasonable.” The problem is that they may not know what’s reasonable, nor, in their confusion and sorrow, will they ask about it or hear what a physician may be telling them. For their part, doctors told to do “everything” will do it, whether it is reasonable or not.

The above scenario is a common one. Feeding into the problem are unrealistic expectations of what doctors can accomplish. Many people think of CPR as a reliable lifesaver when, in fact, the results are usually poor. I’ve had hundreds of people brought to me in the emergency room after getting CPR. Exactly one, a healthy man who’d had no heart troubles (for those who want specifics, he had a “tension pneumothorax”), walked out of the hospital. If a patient suffers from severe illness, old age, or a terminal disease, the odds of a good outcome from CPR are infinitesimal, while the odds of suffering are overwhelming. Poor knowledge and misguided expectations lead to a lot of bad decisions.

But of course it’s not just patients making these things happen. Doctors play an enabling role, too. The trouble is that even doctors who hate to administer futile care must find a way to address the wishes of patients and families. Imagine, once again, the emergency room with those grieving, possibly hysterical, family members. They do not know the doctor. Establishing trust and confidence under such circumstances is a very delicate thing. People are prepared to think the doctor is acting out of base motives, trying to save time, or money, or effort, especially if the doctor is advising against further treatment.

Some doctors are stronger communicators than others, and some doctors are more adamant, but the pressures they all face are similar. When I faced circumstances involving end-of-life choices, I adopted the approach of laying out only the options that I thought were reasonable (as I would in any situation) as early in the process as possible. When patients or families brought up unreasonable choices, I would discuss the issue in layman’s terms that portrayed the downsides clearly. If patients or families still insisted on treatments I considered pointless or harmful, I would offer to transfer their care to another doctor or hospital.

Should I have been more forceful at times? I know that some of those transfers still haunt me. One of the patients of whom I was most fond was an attorney from a famous political family. She had severe diabetes and terrible circulation, and, at one point, she developed a painful sore on her foot. Knowing the hazards of hospitals, I did everything I could to keep her from resorting to surgery. Still, she sought out outside experts with whom I had no relationship. Not knowing as much about her as I did, they decided to perform bypass surgery on her chronically clogged blood vessels in both legs. This didn’t restore her circulation, and the surgical wounds wouldn’t heal. Her feet became gangrenous, and she endured bilateral leg amputations. Two weeks later, in the famous medical center in which all this had occurred, she died.

It’s easy to find fault with both doctors and patients in such stories, but in many ways all the parties are simply victims of a larger system that encourages excessive treatment. In some unfortunate cases, doctors use the fee-for-service model to do everything they can, no matter how pointless, to make money. More commonly, though, doctors are fearful of litigation and do whatever they’re asked, with little feedback, to avoid getting in trouble.

Even when the right preparations have been made, the system can still swallow people up. One of my patients was a man named Jack, a 78-year-old who had been ill for years and undergone about 15 major surgical procedures. He explained to me that he never, under any circumstances, wanted to be placed on life support machines again. One Saturday, however, Jack suffered a massive stroke and got admitted to the emergency room unconscious, without his wife. Doctors did everything possible to resuscitate him and put him on life support in the ICU. This was Jack’s worst nightmare. When I arrived at the hospital and took over Jack’s care, I spoke to his wife and to hospital staff, bringing in my office notes with his care preferences. Then I turned off the life support machines and sat with him. He died two hours later.

Even with all his wishes documented, Jack hadn’t died as he’d hoped. The system had intervened. One of the nurses, I later found out, even reported my unplugging of Jack to the authorities as a possible homicide. Nothing came of it, of course; Jack’s wishes had been spelled out explicitly, and he’d left the paperwork to prove it. But the prospect of a police investigation is terrifying for any physician. I could far more easily have left Jack on life support against his stated wishes, prolonging his life, and his suffering, a few more weeks. I would even have made a little more money, and Medicare would have ended up with an additional $500,000 bill. It’s no wonder many doctors err on the side of overtreatment.

But doctors still don’t over-treat themselves. They see the consequences of this constantly. Almost anyone can find a way to die in peace at home, and pain can be managed better than ever. Hospice care, which focuses on providing terminally ill patients with comfort and dignity rather than on futile cures, provides most people with much better final days. Amazingly, studies have found that people placed in hospice care often live longer than people with the same disease who are seeking active cures. I was struck to hear on the radio recently that the famous reporter Tom Wicker had “died peacefully at home, surrounded by his family.” Such stories are, thankfully, increasingly common.

Several years ago, my older cousin Torch (born at home by the light of a flashlight—or torch) had a seizure that turned out to be the result of lung cancer that had gone to his brain. I arranged for him to see various specialists, and we learned that with aggressive treatment of his condition, including three to five hospital visits a week for chemotherapy, he would live perhaps four months. Ultimately, Torch decided against any treatment and simply took pills for brain swelling. He moved in with me.

We spent the next eight months doing a bunch of things that he enjoyed, having fun together like we hadn’t had in decades. We went to Disneyland, his first time. We’d hang out at home. Torch was a sports nut, and he was very happy to watch sports and eat my cooking. He even gained a bit of weight, eating his favorite foods rather than hospital foods. He had no serious pain, and he remained high-spirited. One day, he didn’t wake up. He spent the next three days in a coma-like sleep and then died. The cost of his medical care for those eight months, for the one drug he was taking, was about $20.

Torch was no doctor, but he knew he wanted a life of quality, not just quantity. Don’t most of us? If there is a state of the art of end-of-life care, it is this: death with dignity. As for me, my physician has my choices. They were easy to make, as they are for most physicians. There will be no heroics, and I will go gentle into that good night. Like my mentor Charlie. Like my cousin Torch. Like my fellow doctors.

Ken Murray, MD, is Clinical Assistant Professor of Family Medicine at USC.

*Photo courtesy of patrick.ward04. ]]> http://www.bioethicsinternational.org/blog/2011/12/08/how-doctors-die-it%e2%80%99s-not-like-the-rest-of-us-but-it-should-be/feed/ 0 http://www.bioethicsinternational.org/blog/2011/12/02/heart-patients-prefer-longevity-over-quality-of-life/ http://www.bioethicsinternational.org/blog/2011/12/02/heart-patients-prefer-longevity-over-quality-of-life/#comments Fri, 02 Dec 2011 15:00:31 +0000 Olwen Jaffe http://www.bioethicsinternational.org/blog/?p=2726 [Reuters] When an elderly person’s chronic disease is impossible to cure, many doctors might assume that patient would chose to improve the quality of his or her remaining life rather than to extend it as is. Those doctors would be mistaken most of the time, according to a new study.

Swiss researchers who surveyed more than 500 elderly heart failure patients found three quarters wouldn’t trade a longer life with symptoms for a shorter life without them, and the severity of symptoms was not a good predictor of who would pick a measure of relief over more time.

“I was quite surprised by the results,” said lead author Dr. Hans-Peter Brunner-La Rocca, of University Hospital Basel in Switzerland.

“Often we think we know what is best for a patient, but this is often wrong,” he told Reuters Health in an email.

“When patients get to an age where the chance of dying in the near future becomes more evident, pure survival may be more important,” said Brunner-La Rocca, who is also affiliated with the Cardiovascular Research Institute at Maastricht University Medical Center in the Netherlands.

Heart failure is a chronic and incurable condition, in which the heart is too weak to pump enough blood to meet the body’s needs. It affects around six million people in the U.S., according to the Centers for Disease Control and Prevention.

Symptoms include shortness of breath, fatigue, weakness and swelling in the legs and feet, reducing a person’s ability to walk or exercise. Heart disease, high blood pressure or diabetes can weaken the heart muscle over time, which can lead to heart failure.

The researchers surveyed 555 heart failure patients, most in their seventies and eighties, asking a series of questions about end-of-life preferences. Then they repeated the survey after 12 months, and again after another six months.

At the start of the study, 74 percent of the respondents said they would not choose to live one more year in excellent health over living two more years in their current state. After a year had elapsed, 80 percent were unwilling to trade more time for symptom relief.

At 18 months, few had changed their minds. When asked about whether they wanted CPR in a crisis, about a third said they didn’t want to be resuscitated.

Even among people with “do not resuscitate” orders in their medical files, about a third said they in fact did want CPR. Dr. Eugene Storozynsky, who studies cardiology at the University of Rochester Medical Center, noted that the study participants represented a broad range of people with heart failure — from those with a just a few symptoms to those with many more severe problems.

Those with milder disease might not consider it bad enough to trade-off their remaining time.

“For these patients, it seems oral medications are still adequate enough to relieve their symptoms so they don’t need to be frequently hospitalized,” said Storozynsky, who was not part of the study.

Patients with end-stage heart failure require multiple hospitalizations in a short period of time due to their symptoms, he pointed out.

“Life expectancy may be six months or less without advanced therapies,” he told Reuters Health.

“Patients in this study were less bothered by their symptoms, so I would define them as less sick than those with end-stage heart failure.”

Participants in the study who were willing to trade more time for symptom relief were older, often female and had more heart failure symptoms, suggesting people may change how they manage their disease over time.

“We couldn’t find particular patterns to predict what individuals would want,” Brunner-La Rocca told Reuters Health.

“So it’s crucial to individually discuss these issues with the patient.” Storozynsky also thinks doctors should be upfront with patients.

“We should discuss all stages of heart failure to make them aware that at its end stage, their life will likely shorten,” he said.

“Not to scare them, but inform them and tailor our treatment to their wishes.”

SOURCE: bit.ly/w41t5q

European Heart Journal, online November 18, 2011.

Many trauma patients have injuries that should be fixable but they bleed to death before doctors can patch them up. The new theory: Putting them into extreme hypothermia just might allow them to survive without brain damage for about an hour so surgeons can do their work.

In a high-stakes experiment funded by the Defense Department, the University of Pittsburgh Medical Center is preparing to test that strategy on a handful of trauma victims who are bleeding so badly from gunshots, stab wounds or similar injuries that their hearts stop beating. Today when that happens, a mere 7 percent of patients survive.

Get cold enough and “you do OK with no blood for a while,” says lead researcher Dr. Samuel Tisherman, a University of Pittsburgh critical care specialist. “We think we can buy time. We think it’s better than anything else we have at the moment, and could have a significant impact in saving a bunch of patients.”

Tisherman calls the rescue attempt “emergency preservation and resuscitation,” EPR instead of CPR. His team plans to begin testing it early next year in Pittsburgh and then expanding the study to the University of Maryland in Baltimore.

If the dramatic approach works, it will spur some rethinking about that line between life and death, says Dr. Arthur Caplan, a University of Pennsylvania bioethicist who is watching the research.

But before the first candidates get chilled, the scientists face a hurdle: The law requires that patients consent to be part of medical experiments after they’re told the pros and cons. That’s impossible when the person is bleeding to death. There won’t even be time to seek a relative’s permission.

So starting Tuesday, the Pittsburgh team is beginning a campaign required by the Food and Drug Administration to educate area residents about the study instead — with signs on city buses, video on YouTube, a web site and two town-hall meetings next month. Residents worried about possible risks, such as brain damage, could sign a list saying they’d opt out if they ever were severely injured.

Go even a few minutes without oxygen and the brain in particular can suffer significant damage. Doctors have long sought to use hypothermia in medicine since discovering that cooling can slow the metabolism of the brain and other organs, meaning they can go without oxygen for longer periods. Donated organs are chilled to preserve them, for example. And people whose hearts are shocked back into beating after what’s called cardiac arrest often are iced down to about 90 or 91 degrees, mild hypothermia that allows the brain to recover from damage that began in those moments between their collapse and revival.

But the CPR that buys time during more routine cardiac arrest doesn’t help trauma patients who’ve already lost massive amounts of blood. Injuries are the nation’s fifth-leading killer, and hemorrhage is one of the main reasons, says Dr. Hasan Alam of Massachusetts General Hospital, who is collaborating with the Pitt study.

Enter deep hypothermia, dropping body temperature to around 50 degrees. It has worked in dogs and pigs, animals considered a model for human trauma, in experiments over the past decade conducted by Tisherman, Alam and a few other research groups.

The animals were sedated and bled until their hearts stopped. Ice-cold fluids were flushed through the body’s largest artery, deep-chilling first the brain and heart and then the rest of the body. After more than two hours in this limbo, they were sewn up, gradually warmed and put on a heart-lung machine to restart blood flow. Most survived what should have been a lethal injury and most appeared to be cognitively fine, Tisherman and Alam say.

Hypothermia is counterintuitive for trauma because the cold inhibits blood clotting, something to watch while rewarming people in the planned study. Still, humans can get that cold and fare well, says Tisherman, who is co-author of a pending patent for emergency-preservation methods. He points to rare cases of people who fall through ice and instead of drowning are rewarmed and wake up, as well as deep-chilling that happens during certain heart operations that require completely stopping blood flow for a short time.

“Nothing is magical. Everything has got its limitations,” cautions Alam. He says the big question is whether deep hypothermia can help in the chaos of real-life trauma when “the blood has already been lost and you’re trying to do catch-up.”

Bioethicist Caplan says one concern is that some people might survive but with enough brain damage that they’d have preferred death. He says the “informed community” procedure designed for studies of emergency treatments cannot adequately cover that scenario.

“Most people are going to say, ‘Yes I would like you to try and save my dad,’” says Caplan, who calls emergency preservation promising. But, he says, “we continue to ignore the 900-pound gorilla of who’s going to manage the bad outcome.”

Vehemently opposed by the Medical Society of the State of New York, the law passed last summer by a two-thirds majority of the Legislature and took effect in February. The legislation was written in collaboration with Compassion and Choices of New York, an organization that advocates for informed choices and greater physical and emotional comfort at the end of life.

The act, which I discussed in this column last August, states that when patients are found to have a terminal illness or condition, health care practitioners must offer to provide information and counseling about appropriate palliative care and end-of-life options. Patients or their surrogates are entirely at liberty to refuse an offer to discuss these options.

California passed a similar law in 2009, and other states are considering them. These measures promise to reduce the cost of care at the end of life, as well as the suffering often associated with it; palliative care is meant to reduce the severity of disease symptoms, pain and stress.

Although there are penalties for violation, it is not the specter of punishment that raises the hackles of some physicians. Rather, they say the new requirement interferes with how they choose to deal with their patients and does not take into account the nuances of a doctor-patient relationship.

In an article in The New England Journal of Medicine last month, Dr. Alan B. Astrow and Dr. Beth Popp of Maimonides Medical Center in Brooklyn wrote that they were troubled by “the law’s heavy-handed intrusion into the doctor-patient relationship.” They stated, “In asserting power over the way in which deep and troubling human questions should be addressed, the New York Legislature seems likely only to generate cynicism at the times when critically ill patients and their families are most in need of honesty, kindness and engagement.”

Another New York physician, Dr. Yashar Hirshaut, an oncologist at NewYork-Presbyterian/Weill Cornell Medical Center who also objects to the act, said in a letter to me that “the new law is going to have a direct negative effect on too many cancer patients.” He wrote that when he explained what the law required to a patient with a life expectancy of six months, her response was, “What, are they trying to kill me?”

How the Law Can Help

This law is not about ending a patient’s life. Rather, it is intended to make the end, when that end is near, as physically and emotionally painless as possible. The law is intended to spare terminally ill patients from futile medical interventions that can detract from the quality of their remaining days.

Despite their opposition to this legislation, Dr. Astrow and Dr. Popp acknowledged that “seriously ill patients and their families need accurate information about prognosis and treatment options; physicians’ repeated failure in this realm is clearly a public health problem that the profession should be required to address.”

David C. Leven, who heads Compassion and Choices of New York, said in an e-mail that “the law simply requires physicians to do what the authors say should be required of them. The profession has not addressed this public health problem. The Legislature did.”

While legislation may not be the ideal way to go about this, the fact is that too many doctors fail to inform their terminally ill patients about the risks of continuing aggressive treatments to the bitter end and the benefits of opting only for treatment of discomforting symptoms through palliative or hospice care.

Doctors are notorious death-deniers, often more reluctant than their patients to admit that it is pointless to pursue treatment that is medically futile. They either fail to mention hospice care or suggest it far too late — usually within a week of death, when hospice personnel have little time to get to know the patient and family and to provide the kind of care that can make for a graceful exit from this world.

Studies have shown that patients with a short life expectancy who choose hospice over continued treatment and last-ditch assists like ventilators and feeding tubes live not only better but, surprisingly, longer on average. Researchers also have found that surviving family members are less likely to experience prolonged depression and grief when their loved ones are spared grotesque medical interventions and receive only comfort care at the end of their lives.

Even knowing these facts, some patients are likely to choose to take advantage of anything and everything in the medical armamentarium that could conceivably grant them extra days, weeks or months of life. And such a choice is the prerogative of every terminally ill patient; the new law does not in any way deny that choice. It merely says that patients should be offered the chance to learn about the alternatives.

Nor does the law prohibit patients (or families) from changing their minds and requesting aggressive measures after an initial acceptance of palliative care.

Communication Skills Needed

Many physicians fear that merely broaching the subject of palliative care will strip terminally ill patients of hope. But I have to wonder whether offering unrealistic hope for a cure, or overly optimistic prognoses, isn’t more harmful to patients and their families. If patients are unaware that the remaining time is short, they may lose the chance to resolve important personal issues, say meaningful good-byes, and leave legacies or memories that survivors can cherish long after death.

Few physicians trained more than a decade ago were taught how to communicate emotionally challenging information to their patients. But in recent years the medical literature and continuing education courses have sought to fill in this gap.

For example, Dr. James A. Tulsky of the Center for Palliative Care at Duke University Medical Center wrote in The Journal of the American Medical Association that “talking about treatment choices at the end of life does not necessarily rob patients of hope. Redirecting the patient’s goal toward realistic hopes and being present with compassion can serve as a powerful act in helping patients make decisions while maintaining a hopeful outlook.”

Dr. Tulsky advised that patients be told, in effect, to hope for the best but to prepare for the worst. Their goals can be broadened to include not just successful treatment, he suggested, but also the measures they want taken if they cannot be cured and advice on how to accomplish important tasks that might otherwise be left undone.

Terminally ill patients may fear not just death, but also that in choosing palliative or hospice care, they will be abandoned by their primary physicians. Disappearing doctors are all too common when curative treatment options are exhausted. If doctors truly want to preserve hope, they owe it to their patients to stick around until the end.

While most patients prefer supportive measures that avoid a hospital death, U.S. patients received more chemotherapy. Ontario patients have more days in hospital, have more use of emergency rooms, and were much more likely to die in hospital.

An editorial about the study concludes the rates of inpatient deaths are too high in the U.S. and much too high in Ontario.

The study was done by the National Cancer Institute and specifically compared end-of-life care for lung cancer patients. The identified patients were 65 and older who died with non-small cell lung cancer.

The data came from The Ontario Cancer Registry and the U.S. Surveillance, Epidemiology, and End Results(SEER)-Medicare data bases for 1999-2003.

Patients in both countries used health-care services extensively, particularly in the last month of life. Ontario patients had hospital admissions and used emergency room services at rates that were statistically significantly greater than those of U.S. patients.

More than twice as many Ontario patients died in hospital (48.5 per cent of short-term survivors compared to 20.4 per cent in the U.S.). Yet, a majority of Ontario patients reported they would prefer to die at home.

In each of the last five months, chemotherapy rates were statistically significantly higher among U.S. patients than among the Ontario patients. It was noted that American doctors may have a more aggressive attitude toward treatment and that oncologists paid by Medicare can profit from some chemotherapy whereas oncologists in Ontario do not have a financial incentive to prescribe chemotherapy.

The authors of the study, including Joan L. Warren of the National Cancer Institute, felt the findings will inform health-care planners and policy makers about opportunities for change.

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.

Chronically ill Medicare patients spent fewer days in the hospital and received more hospice care in 2007 than they did in 2003, but at the same time there was an increase in the intensity of care for patients who were hospitalized, according to a new Dartmouth Atlas Project report on trends and variation in end-of-life care.

While Medicare patients diagnosed with severe chronic illness were less likely to die in a hospital and more likely to receive hospice care, at the same time, they had many more visits from physicians, particularly medical specialists, and spent more days in intensive care units. Growth in intensive care and medical specialist capacity, the researchers say, can lead to increased aggressiveness of care.

“In addition to its effects on patients’ quality of life, unnecessarily aggressive care carries a high financial cost. About one-fourth of all Medicare spending goes to pay for the care of patients in their last year of life, and much of the growth in Medicare spending is the result of the high cost of treating chronic disease,” said David C. Goodman, M.D., M.S., lead author and co-principal investigator for the Dartmouth Atlas Project, and director of the Center for Health Policy Research at the Dartmouth Institute for Health Policy and Clinical Practice. “It may be possible to reduce spending, while also improving the quality of care, by ensuring that patient preferences are more closely followed.”

This report updates previous findings regarding regional variations in end-of-life care, documenting trends from 2003 to 2007 in the use of medical resources to treat Medicare patients at the end of life, both among hospital referral regions and among 94 academic medical centers. Throughout this period, the constant was the importance of geography; the care patients received in the months before they died depended largely on where they lived and received their care. Researchers found that trends in end-of-life care differed substantially across regions and academic medical centers, and that widespread variation persists.

For example, even at academic medical centers, the experiences of patients at the end of life differ remarkably. Most academic medical centers substantially changed the intensity of the end-of-life care they provided from 2003 to 2007, but not in the same direction; some increased the intensity of care, while others provided less intensive care.

Deaths Occurring in Hospitals

From 2003 to 2007, the percentage of chronically ill patients dying in hospitals and the average number of days they spent in the hospital before their deaths declined in most regions of the country and at most academic medical centers. In 2003, 32.2 percent of patients died in a hospital; by 2007, the rate had dropped to 28.1 percent. In 2007, the highest rates of death in a hospital were in regions in and around New York City, including Manhattan (45.8%), East Long Island (41.9%) and the Bronx (39.9%). Chronically ill patients were far less likely to die in a hospital in Minot, N.D. (12.0%), Fort Lauderdale, Fla. (19.0%) and Portland, Ore. (19.6%).

Among patients using academic medical centers for most of their care, rates of deaths occurring in the hospital also decreased. Even so, several hospitals that had among the lowest rates in 2003 saw substantial decreases over the five-year period; one example is University of Utah Health Care in Salt Lake City, where the rate dropped from 31.5 percent to 21.3 percent. In comparison, in 2003, UCLA Medical Center and the Medical College of Georgia in Augusta had very similar rates, at 39.1 percent and 39.7 percent, respectively. Over the next five years, their rates moved in opposite directions, with UCLA joining those medical centers with the highest rates at 45.5 percent, while the rate at the Medical College of Georgia dropped to 28.7 percent.

Hospital Days During the Last Six Months of Life

Overall, the average patient spent slightly fewer days in the hospital during the last six months of life in 2007 than in 2003, as the national rate dropped from 11.3 to 10.9 hospital days per patient. In 2007, chronically ill patients in Manhattan spent, on average, 20.6 days in the hospital during their last six months of life, almost four times more than patients in Ogden, Utah, where the average was 5.2 days.

Among those academic medical centers where patients spent less time in the hospital in 2007 than in 2003 were the University of Texas Medical Branch Hospitals in Galveston (-5.0 days), the University of Iowa Hospitals and Clinics in Iowa City (-5.0 days) and Tufts-New England Medical Center in Boston (-4.6 days). Ten academic medical centers had increases of at least two days, including Hahnemann University Hospital in Philadelphia (+6.8 days).

Patients Seeing 10 or More Doctors During the Last Six Months of Life

Overall, chronically ill patients were significantly more likely to be treated by 10 or more doctors in the last six months of life in 2007 than they were in 2003, as the national rate increased from 30.8 percent to 36.1 percent. In 2007, patients in Royal Oak, Mich. received the most intensive care by this measure, with 58.1 percent of patients seeing 10 or more doctors in the last six months of life. Other regions with high rates included Ridgewood, N.J. (57.6%) and Philadelphia (57.2%). Regions with low rates included Boise, Idaho (14.2%), Salt Lake City (15.0%) and Medford, Ore. (16.4%).

From 2003 to 2007, among the 35 academic medical centers for which data are available, 22 had increases in the percentage of patients seeing 10 or more doctors in the last six months of life. Emory University Hospital saw the largest growth in this rate, from 40.4 percent to 63.2 percent, while the University of North Carolina Hospitals in Chapel Hill had the largest decrease, from 45.0 percent to 35.2 percent. In 2003, the likelihood that a patient at Emory University Hospital would see 10 or more doctors was similar to that for a patient at the University of North Carolina Hospitals. But over the next five years, the percentage of patients seeing 10 or more doctors increased 22.8 percentage points at Emory, while the percentage dropped 9.8 percentage points at UNC Hospitals.

“The differences observed across regions and academic medical centers in the approach to caring for patients with chronic illness underscore important opportunities to learn how to improve end-of-life care. While current trends demonstrate that change is occurring in many regions and at many institutions, it is not always in the direction that patients may prefer,” said Elliott S. Fisher, M.D., M.P.H., report author and co-principal investigator of the Dartmouth Atlas Project and director of the Center for Population Health at the Dartmouth Institute for Health Care Policy and Clinical Practice. “More work remains to ensure that future variation in care reflects the well-informed preferences of patients.”

The researchers explain that variations in the treatment of chronically ill Medicare patients depend largely on the systems of care within different regions and hospitals. For example, declines in the rates of death in a hospital and of death associated with admission to intensive care may also be evidence of attempts to provide care that aligns more closely with many patients’ preferences. But not all hospitals changed at the same pace. Furthermore, the number of ICU days in the last six months of life increased both nationally and in most hospitals and regions; so, too, did the amount of physician labor used.

“This report has important implications for patients, health care providers and policy-makers. By providing insight into patterns of care, patients can look to these data to get a sense of where care is likely to be more or less intensive. Providers can look for insights into potential savings they can achieve through improved care of chronic illness that allows patients to remain safely out of the hospital, and policy-makers can identify regions that may have promising approaches,” said Risa Lavizzo-Mourey, M.D., M.B.A., president and CEO of the Robert Wood Johnson Foundation, a longtime funder of the Dartmouth Atlas Project.

The Dartmouth Atlas Project is located at the Dartmouth Institute for Health Policy and Clinical Practice. A link to the full report, Trends and Variation in End-of-Life Care for Medicare Beneficiaries with Severe Chronic Illness, and data tables can be found at www.dartmouthatlas.org.

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/