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Hans Calmeyer Righteous Gentile 1903-1972

Lawyer for Life



tree of life klimt

The arguments that life has great meaning and value, or that a life has a future impact, or that a life might lead to a better eternity through conversion or other God-pleasing behavior before death, all tend to get diluted when it comes to the terminally ill without hope. We are all terminal, but not hopeless.

The Right to Die vs. Society’s Right to Let Die

Euthanasia Increasing too Rapidly in Netherlands ?

Ironically, it is in one of Calmeyer’s most beloved countries, the home of the World Court of Justice, and against all principles he would have espoused, that Euthanasia is becoming most established and widespread in the Netherlands as an accepted way of assisted death.

Euthanasia is a slippery slope indeed, one that the Nazis were quite happily engaged in (the unrequested kind). While even some Jewish friends might argue for the compassionate side of helping the indigent or infirm elderly to hasten their own death, it is still against all hippocratic oaths made by medical professionals, and abuse is not far behind. In the Netherlands, the Groningen Protocol extends the death privilege to infants that are judged to require euthanasia, not even just “abortifacts” still in the womb. Mankind has suffered in various ways through all its existence. Is observed-suffering and self-loathing to become the standard for future state intervention in the continued existence of marginalized individuals?

Sharp Growth in Dutch Euthanasia Deaths

Commentary by Alex Schadenberg,  Chairman, Euthanasia Prevention Coalition

June 16, 2010 ( - The 2009  Netherlands euthanasia statistics were reported today in the Dutch media. The number of euthanasia deaths in the  Netherlands has significantly increased on a yearly basis for several  years. The most recent report suggested that there were 2636 reported  euthanasia deaths, a 13% increase over the 2008 statistics.

It  should be noted that the media reports concerning euthanasia in the  Netherlands do not include all categories of direct and intentional  reported deaths. The Netherlands has separate categories for assisted  suicide and deaths without explicit request or consent.

The most  recent full report concerning euthanasia in the Netherlands (2005)  stated that there were approximately 400 assisted suicide deaths and 550 deaths without explicit request or consent.

Therefore a more  accurate number of reported deaths would be 2636 reported euthanasia  deaths, plus 400 reported assisted suicide deaths, plus 550 deaths  without explicit request or consent.

The number of reported  euthanasia deaths has grown significantly. In 2008 there were 2331  reported deaths, in 2007 there were 2120 reported deaths, in 2006 there  were 1923 reported deaths, and in 2003 there were 1815 reported deaths.

The number of deaths by euthanasia continues to escalate. Consider the fact that the 2005 official study of euthanasia in the Netherlands indicated that 7.1% of all deaths were by sedation and dehydration. These are  often euthanasia deaths because the death is direct and intentional and  the method of death is dehydration. A 2007 report suggested that up to  10% of all deaths in the Netherlands were by sedation and dehydration.

There is a clear ethical difference between intentionally withholding fluids  from a person who is nearing death, and dies a natural death, and a  person who was not otherwise dying and dies by intentional dehydration.

In addition, the yearly reports from the media do not include the number  of infant eugenic euthanasia deaths, killed via the Groningen Protocol.  (See an article concerning the number of euthanasia deaths in the  Netherlands here)

Meanwhile a study by Anthropologist Anne Marie The suggested that many of the  reported cases of euthanasia were not voluntarily requested by the  person who died. Anne Marie The interviewed physicians who participated  in euthanasia and asked them about specific circumstances. She found  that often the decision to go ahead with euthanasia was made by the  physician.

Anne Marie The stated to the NRC Handlesblad:

"There is the euthanasia law  and then there is the euthanasia reality. To think that we have neatly  arranged everything by adopting the euthanasia law is an illusion.  Reality is more complicated than that: every patient, every situation  and every doctor is different."

Now, leaders of the  Dutch euthanasia lobby, including Eugene Sutorius, the former leader of  the NVVE, are urging parliament to legalize euthanasia for people who  are 70 years old and "tired of living." This concept is ridiculous if you consider the reality  of elder abuse in the Western culture.

An article in the Dutch  news stated that: "The 2008 increase led the health ministry to set up  an investigation into the increase. That investigation is due to start  this month."

The reality is that euthanasia is out of control in  the Netherlands.

At the same time momentum is shifting against the legalization of euthanasia and assisted suicide in other parts of the  world. In January, the New Hampshire legislature, defeated a bill to  legalize assisted suicide by 242 to 113. In April, a bill to legalize  euthanasia and assisted suicide was defeated in Canada by 228 to 59.  Most recently, the Connecticut court rejected a legal challenge by  Compassion & Choices to strike down the State assisted suicide law.

More Dutch News:                            from the UK Telegraph:

 By Bruno Waterfield in Brussels Published: 6:20PM GMT 10 Mar 201

The influential Dutch "Right to Die" campaign, active since 1973, has launched new "vrijwillig levenseinde", or "of free will", demands to extend euthanasia beyond assisted suicide for terminally ill people.

The group has proposed training non-medical staff to administer a lethal injection to healthy people over the age of 70 who "consider their lives complete" and want to die.

Where’s the slippery slope?

Well, until about 20 years ago, assisted suicide/euthanasia were illegal in the Netherlands. Then they legalized assisted suicide/euthanasia for those who were terminally ill, with less than 6 months to live, and in unbearable or untreatable pain. Very soon this morphed into assisted suicide/euthanasia for people with chronic diseases or pain, then to those who had psychological but no physical pain, and on and on.

Where has this led? Well, every year in the Netherlands several thousand people are now euthanized without their ever having asked for it.

I know what comes next: Death for anyone, anywhere, for whatever reason. That will include not only the elderly, but also those with disabilities, others the Dutch feel are expendable, and even those who may be judged to have a difficult life of suffering in the future.

I’d have more respect for the pro-death crowd if they just came out and said what they really mean:

Death for all, whenever, just because.


As expected, Religion enhances the view of the value of Life:

Atheist doctors 'more likely to hasten death'

Study finds medics' faith affects care of terminally ill, as hospital clinicians admit 'ethically controversial' decisions

Doctor examining a patient Doctors who are atheist or agnostic are twice as  likely as those with deeply religious beliefs to take decisions that  might shorten a terminally-ill patient's life, according to research.  Photograph: Corbis

Terminally-ill patients would be well advised to find out the  religious beliefs of their doctor, according to research showing the  effect of faith on a doctor's willingness to make decisions that could  hasten death.

Doctors who are atheist or agnostic are twice as likely to take decisions that  might shorten the life of somebody who is terminally ill as doctors who  are deeply religious “ and doctors with strong religious convictions are less likely even to discuss such decisions with the patient, according  to Professor Clive Seale, from the centre for health sciences at Barts  and the London school of medicine and dentistry.

"If I were a  patient facing end of life care, I would want to know what my doctor's  views were on religious matters “ whether they are non-religious or  religious and whether the doctor felt that would influence them in the  kinds of decisions they were looking at," said Seale.

A patient  who wanted their life prolonged at all costs in the event of a terminal  illness, or did not want it prolonged, should make sure they had a  doctor who was in sympathy with this.

Doctors are influenced by their beliefs, just as other people are, said Seale.

"It is easy for clinicians to present themselves as neutral appliers of  science, but values do come into it," he said. That is accepted in  abortion care, but the issue has not yet been widely discussed in the  care of the dying. "I had a GP who was powerfully committed to not  legalising euthanasia," said Seale. He has now changed his GP.

Seale's study, published online today in the Journal of Medical Ethics, was based on a survey of doctors in specialisms likely to care for  people at the end of life, such as neurology, elderly and palliative  care but also general practice. More than 8,500 doctors were contacted  and almost 4,000 responded.

The doctors were asked about the care  of their last patient who died, if relevant “ including whether they had provided continuous deep sedation until death and whether they had  discussed decisions judged likely to shorten life with the patient.

They were also asked their religious beliefs, ethnicity, and their views on  assisted dying/euthanasia. More than 3,000 described the death of a  patient.

Specialists in the care of the elderly were somewhat more likely to be Hindu or Muslim, while palliative care doctors were  somewhat more likely than other doctors to be Christian, white, and  agree that they were "religious."

The chances of a doctor making  an ethically controversial decision expected or partly intended to end  life was largely unrelated to the doctor's ethnicity, but was strongly  related to his or her specialisation. Specialised doctors in hospitals  were almost 10 times as likely to report this than palliative care  specialists.

But regardless of their speciality, doctors who  described themselves as "extremely" or "very non-religious" were almost  twice as likely to report having taken these kinds of decisions as those with a religious belief.

The most religious doctors were  significantly less likely than other doctors to have discussed options at the end of life with their patient.

You would think Euthanasia can remain an individual decision, private and an act against one’s own life, not against others. Does the right to life not ultimately belong to the life’s owner?

Euthanasia Stories emphasize individuals whose choices will not impact society, but the facts from the Netherlands show that, once started, a culture of  death can't be controlled. The Netherlands started with euthanasia for competent adults who were terminally ill. Just two decades later, the  law covers depressed adults (with no physical illness), incompetent  adults whom others believe probably want to die and disabled babies. Those over 16 can obtain euthanasia without parental consent and the latest move is to grant a final exit to those over 70 who simply want to end their lives. In short, there's plenty to think about the next time the news promotes an emotional story about suicide.                  Calgary Herald ^ | 9/10/10 |

The Right to Die vs. Society’s Right to Let Die

Medical Technology Prolong Life Beyond Reason ?

Letting Go   (warning: long New Yorker article)

What should medicine do when it can’t save your life? by Atul Gawande  August 2, 2010

Modern medicine is  good at staving off death with aggressive interventions  and bad at  knowing when to focus, instead, on improving the days that terminal  patients have left.

Sara Thomas Monopoli was  pregnant with her first child when her doctors learned that she was  going to die. It started with a cough and a pain in her back. Then a  chest X-ray showed that her left lung had collapsed, and her chest was  filled with fluid. A sample of the fluid was drawn off with a long  needle and sent for testing. Instead of an infection, as everyone had  expected, it was lung cancer, and it had already spread to the lining of her chest. Her pregnancy was thirty-nine weeks along, and the  obstetrician who had ordered the test broke the news to her as she sat  with her husband and her parents. The obstetrician didn’t get into the  prognosis she would bring in an oncologist for that, but Sara was stunned. Her mother, who had lost her best friend to lung cancer, began  crying.

The doctors wanted to start treatment right away, and that meant inducing labor to get the baby out. For the moment, though, Sara  and her husband, Rich, sat by themselves on a quiet terrace off the  labor floor. It was a warm Monday in June, 2007. She took Rich’s hands,  and they tried to absorb what they had heard. Monopoli was thirty-four.  She had never smoked, or lived with anyone who had. She exercised. She  ate well. The diagnosis was bewildering. This is going to be O.K.,  Rich told her. We’re going to work through this. It’s going to be hard, yes. But we’ll figure it out. We can find the right treatment. For the moment, though, they had a baby to think about.

So Sara and I  looked at each other, Rich recalled, and we said, We don’t have  cancer on Tuesday. It’s a cancer-free day. We’re having a baby. It’s  exciting. And we’re going to enjoy our baby. On Tuesday, at 8:55 P.M., Vivian Monopoli, seven pounds nine ounces, was born. She had wavy brown hair, like her mom, and she was perfectly healthy.

The next day, Sara underwent blood tests and body scans. Dr. Paul Marcoux, an oncologist, met with her and her family to discuss the findings. He  explained that she had a non-small cell lung cancer that had started in  her left lung. Nothing she had done had brought this on. More than  fifteen per cent of lung cancers more than people realize occur in  non-smokers. Hers was advanced, having metastasized to multiple lymph  nodes in her chest and its lining. The cancer was inoperable. But there  were chemotherapy options, notably a relatively new drug called Tarceva, which targets a gene mutation commonly found in lung cancers of female  non-smokers. Eighty-five per cent respond to this drug, and, Marcoux  said, some of these responses can be long-term.”

Words like  respond and long-term provide a reassuring gloss on a dire reality.  There is no cure for lung cancer at this stage. Even with chemotherapy,  the median survival is about a year. But it seemed harsh and pointless  to confront Sara and Rich with this now. Vivian was in a bassinet by the bed. They were working hard to be optimistic. As Sara and Rich later  told the social worker who was sent to see them, they did not want to  focus on survival statistics. They wanted to focus on aggressively  managing this diagnosis.

Sara was started on the Tarceva, which produced an itchy, acne-like facial  rash and numbing tiredness. She also underwent a surgical procedure to  drain the fluid around her lung; when the fluid kept coming back, a  thoracic surgeon eventually placed a small, permanent tube in her chest, which she could drain whenever fluid accumulated and interfered with  her breathing. Three weeks after the delivery, she was admitted to the  hospital with severe shortness of breath from a pulmonary embolism a  blood clot in an artery to the lungs, which is dangerous but not  uncommon in cancer patients. She was started on a blood thinner. Then  test results showed that her tumor cells did not have the mutation that  Tarceva targets. When Marcoux told Sara that the drug wasn’t going to  work, she had an almost violent physical reaction to the news, bolting  to the bathroom in mid-discussion with a sudden bout of diarrhea.

Dr. Marcoux recommended a different, more standard chemotherapy, with two  drugs called carboplatin and paclitaxel. But the paclitaxel triggered an extreme, nearly overwhelming allergic response, so he switched her to a regimen of carboplatin plus gemcitabine. Response rates, he said, were  still very good for patients on this therapy.

She spent the  remainder of the summer at home, with Vivian and her husband and her  parents, who had moved in to help. She loved being a mother. Between  chemotherapy cycles, she began trying to get her life back.

Then,  in October, a CT scan showed that the tumor deposits in her left lung  and chest and lymph nodes had grown substantially. The chemotherapy had  failed. She was switched to a drug called pemetrexed. Studies found that it could produce markedly longer survival in some patients. In reality, however, only a small percentage of patients gained very much. On  average, the drug extended survival by only two month from eleven  months to thirteen months and that was in patients who, unlike Sara, had responded to first-line chemotherapy.

She worked hard to take  the setbacks and side effects in stride. She was upbeat by nature, and  she managed to maintain her optimism. Little by little, however, she  grew sicker increasingly exhausted and short of breath. By November, she didn’t have the wind to walk the length of the hallway from the parking garage to Marcoux’s office; Rich had to push her in a wheelchair.

A few days before Thanksgiving, she had another CT scan, which showed  that the pemetrexed third drug regimen wasn’t working, either. The  lung cancer had spread: from the left chest to the right; to the liver;  to the lining of her abdomen; and to her spine. Time was running out.

This is the moment in Sara’s story that poses a fundamental question for  everyone living in the era of modern medicine: What do we want Sara and  her doctors to do now? Or, to put it another way, if you were the one  who had metastatic cancer or, for that matter, a similarly advanced case of emphysema or congestive heart failure what would you want your  doctors to do?

The issue has become pressing, in recent years, for reasons of expense. The soaring cost of health care is the greatest  threat to the country’s long-term solvency, and the terminally ill  account for a lot of it. Twenty-five per cent of all Medicare spending  is for the five per cent of patients who are in their final year of  life, and most of that money goes for care in their last couple of  months which is of little apparent benefit.

Spending on a disease  like cancer tends to follow a particular pattern. There are high initial costs as the cancer is treated, and then, if all goes well, these costs taper off. Medical spending for a breast-cancer survivor, for instance, averaged an estimated fifty-four thousand dollars in 2003, the vast  majority of it for the initial diagnostic testing, surgery, and, where  necessary, radiation and chemotherapy. For a patient with a fatal  version of the disease, though, the cost curve is U-shaped, rising again toward the end to an average of sixty-three thousand dollars during the last six months of life with an incurable breast cancer. Our medical  system is excellent at trying to stave off death with  eight-thousand-dollar-a-month chemotherapy, three-thousand-dollar-a-day  intensive care, five-thousand-dollar-an-hour surgery. But, ultimately,  death comes, and no one is good at knowing when to stop.

The  subject seems to reach national awareness mainly as a question of who  should win when the expensive decisions are made: the insurers and the taxpayers footing the bill or the patient battling for his or her life. Budget hawks urge us to face the fact that we can’t afford everything.  Demagogues shout about rationing and death panels. Market purists blame  the existence of insurance: if patients and families paid the bills  themselves, those expensive therapies would all come down in price. But  they’re debating the wrong question. The failure of our system of  medical care for people facing the end of their life runs much deeper.  To see this, you have to get close enough to grapple with the way  decisions about care are actually made.

Recently, while seeing a  patient in an intensive-care unit at my hospital, I stopped to talk with the critical-care physician on duty, someone I’d known since college.  I’m running a warehouse for the dying, she said bleakly. Out of the  ten patients in her unit, she said, only two were likely to leave the  hospital for any length of time. More typical was an almost  eighty-year-old woman at the end of her life, with irreversible  congestive heart failure, who was in the I.C.U. for the second time in  three weeks, drugged to oblivion and tubed in most natural orifices and a few artificial ones. Or the seventy-year-old with a cancer that had  metastasized to her lungs and bone, and a fungal pneumonia that arises  only in the final phase of the illness. She had chosen to forgo  treatment, but her oncologist pushed her to change her mind, and she was put on a ventilator and antibiotics. Another woman, in her eighties,  with end-stage respiratory and kidney failure, had been in the unit for  two weeks. Her husband had died after a long illness, with a feeding  tube and a tracheotomy, and she had mentioned that she didn’t want to  die that way. But her children couldn’t let her go, and asked to proceed with the placement of various devices: a permanent tracheotomy, a  feeding tube, and a dialysis catheter. So now she just lay there  tethered to her pumps, drifting in and out of consciousness.

Almost all these patients had known, for some time, that they had a terminal  condition. Yet they along with their families and doctors were  unprepared for the final stage. We are having more conversation now  about what patients want for the end of their life, by far, than they  have had in all their lives to this point, my friend said. The problem is that’s way too late. In 2008, the national Coping with Cancer  project published a study showing that terminally ill cancer patients  who were put on a mechanical ventilator, given electrical defibrillation or chest compressions, or admitted, near death, to intensive care had a substantially worse quality of life in their last week than those who  received no such interventions. And, six months after their death, their caregivers were three times as likely to suffer major depression.  Spending one’s final days in an I.C.U. because of terminal illness is  for most people a kind of failure. You lie on a ventilator, your every  organ shutting down, your mind teetering on delirium and permanently  beyond realizing that you will never leave this borrowed, fluorescent  place. The end comes with no chance for you to have said goodbye or It’s O.K. or I’m sorry or I love you.

People have concerns  besides simply prolonging their lives. Surveys of patients with terminal illness find that their top priorities include, in addition to avoiding suffering, being with family, having the touch of others, being  mentally aware, and not becoming a burden to others. Our system of  technological medical care has utterly failed to meet these needs, and  the cost of this failure is measured in far more than dollars. The hard  question we face, then, is not how we can afford this system’s expense.  It is how we can build a health-care system that will actually help  dying patients achieve what’s most important to them at the end of their lives.

For all but our most recent history,  dying was typically a brief process. Whether the cause was childhood  infection, difficult childbirth, heart attack, or pneumonia, the  interval between recognizing that you had a life-threatening ailment and death was often just a matter of days or weeks. Consider how our  Presidents died before the modern era. George Washington developed a  throat infection at home on December 13, 1799, that killed him by the  next evening. John Quincy Adams, Millard Fillmore, and Andrew Johnson  all succumbed to strokes, and died within two days. Rutherford Hayes had a heart attack and died three days later. Some deadly illnesses took a  longer course: James Monroe and Andrew Jackson died from the months-long consumptive process of what appears to have been tuberculosis; Ulysses  Grant’s oral cancer took a year to kill him; and James Madison was  bedridden for two years before dying of old age. But, as the  end-of-life researcher Joanne Lynn has observed, people usually  experienced life-threatening illness the way they experienced bad  weather as something that struck with little warning and you either got  through it or you didn’t.

Dying used to be accompanied by a prescribed set of customs. Guides to ars moriendi, the art of dying, were extraordinarily popular; a 1415 medieval Latin  text was reprinted in more than a hundred editions across Europe.  Reaffirming one’s faith, repenting one’s sins, and letting go of one’s  worldly possessions and desires were crucial, and the guides provided  families with prayers and questions for the dying in order to put them  in the right frame of mind during their final hours. Last words came to  hold a particular place of reverence.

These days, swift  catastrophic illness is the exception; for most people, death comes only after long medical struggle with an incurable condition advanced  cancer, progressive organ failure (usually the heart, kidney, or liver), or the multiple debilities of very old age. In all such cases, death is certain, but the timing isn’t. So everyone struggles with this  uncertainty with how, and when, to accept that the battle is lost. As  for last words, they hardly seem to exist anymore. Technology sustains  our organs until we are well past the point of awareness and coherence.  Besides, how do you attend to the thoughts and concerns of the dying  when medicine has made it almost impossible to be sure who the dying  even are? Is someone with terminal cancer, dementia, incurable  congestive heart failure dying, exactly?

I once cared for a woman  in her sixties who had severe chest and abdominal pain from a bowel  obstruction that had ruptured her colon, caused her to have a heart  attack, and put her into septic shock and renal failure. I performed an  emergency operation to remove the damaged length of colon and give her a colostomy. A cardiologist stented her coronary arteries. We put her on  dialysis, a ventilator, and intravenous feeding, and stabilized her.  After a couple of weeks, though, it was clear that she was not going to  get much better. The septic shock had left her with heart and  respiratory failure as well as dry gangrene of her foot, which would  have to be amputated. She had a large, open abdominal wound with leaking bowel contents, which would require twice-a-day cleaning and dressing  for weeks in order to heal. She would not be able to eat. She would need a tracheotomy. Her kidneys were gone, and she would have to spend three days a week on a dialysis machine for the rest of her life.

She  was unmarried and without children. So I sat with her sisters in the  I.C.U. family room to talk about whether we should proceed with the  amputation and the tracheotomy. Is she dying? one of the sisters asked me. I didn’t know how to answer the question. I wasn’t even sure what  the word dying meant anymore. In the past few decades, medical science has rendered obsolete centuries of experience, tradition, and language  about our mortality, and created a new difficulty for mankind: how to  die.

One Friday morning this spring, I went on  patient rounds with Sarah Creed, a nurse with the hospice service that  my hospital system operates. I didn’t know much about hospice. I knew  that it specialized in providing comfort care for the terminally ill,  sometimes in special facilities, though nowadays usually at home. I knew that, in order for a patient of mine to be eligible, I had to write a  note certifying that he or she had a life expectancy of less than six  months. And I knew few patients who had chosen it, except maybe in their very last few days, because they had to sign a form indicating that  they understood their disease was incurable and that they were giving up on medical care to stop it. The picture I had of hospice was of a  morphine drip. It was not of this brown-haired and blue-eyed former  I.C.U. nurse with a stethoscope, knocking on Lee Cox’s door on a quiet  street in Boston’s Mattapan neighborhood.

Hi, Lee, Creed said when she entered the house.

Hi, Sarah, Cox said. She was seventy-two years old. She’d had several  years of declining health due to congestive heart failure from a heart  attack and pulmonary fibrosis, a progressive and irreversible lung  disease. Doctors tried slowing the disease with steroids, but they  didn’t work. She had cycled in and out of the hospital, each time in  worse shape. Ultimately, she accepted hospice care and moved in with her niece for support. She was dependent on oxygen, and unable to do the  most ordinary tasks. Just answering the door, with her thirty-foot  length of oxygen tubing trailing after her, had left her winded. She  stood resting for a moment, her lips pursed and her chest heaving.

Creed took Cox’s arm gently as we walked to the kitchen to sit down, asking  her how she had been doing. Then she asked a series of questions,  targeting issues that tend to arise in patients with terminal illness.  Did Cox have pain? How was her appetite, thirst, sleeping? Any trouble  with confusion, anxiety, or restlessness? Had her shortness of breath  grown worse? Was there chest pain or heart palpitations? Abdominal  discomfort? Trouble with bowel movements or urination or walking?

She did have some new troubles. When she walked from the bedroom to the  bathroom, she said, it now took at least five minutes to catch her  breath, and that frightened her. She was also getting chest pain. Creed  pulled a stethoscope and a blood-pressure cuff from her medical bag.  Cox’s blood pressure was acceptable, but her heart rate was high. Creed  listened to her heart, which had a normal rhythm, and to her lungs,  hearing the fine crackles of her pulmonary fibrosis but also a new  wheeze. Her ankles were swollen with fluid, and when Creed asked for her pillbox she saw that Cox was out of her heart medication. She asked to  see Cox’s oxygen equipment. The liquid-oxygen cylinder at the foot of  the neatly made bed was filled and working properly. The nebulizer equipment for her inhaler treatments, however, was broken.

Given  the lack of heart medication and inhaler treatments, it was no wonder  that she had worsened. Creed called Cox’s pharmacy to confirm that her  refills had been waiting, and had her arrange for her niece to pick up  the medicine when she came home from work. Creed also called the  nebulizer supplier for same-day emergency service.

She then  chatted with Cox in the kitchen for a few minutes. Her spirits were low. Creed took her hand. Everything was going to be all right, she said.  She reminded her about the good days she’d had the previous weekend, for example, when she’d been able to go out with her portable oxygen  cylinder to shop with her niece and get her hair colored.

I asked Cox about her previous life. She had made radios in a Boston factory.  She and her husband had two children, and several grandchildren.

When I asked her why she had chosen hospice care, she looked downcast. The  lung doctor and heart doctor said they couldn’t help me any more, she  said. Creed glared at me. My questions had made Cox sad again.

It’s good to have my niece and her husband helping to watch me every day,  she said. But it’s not my home. I feel like I’m in the way.

Creed gave her a hug before we left, and one last reminder. What do you do  if you have chest pain that doesn’t go away? she asked.

Take a nitro, Cox said, referring to the nitroglycerin pill that she can slip under her tongue.


Call you.

Where’s the number?

She pointed to the twenty-four-hour hospice call number that was taped beside her phone.

Outside, I confessed that I was confused by what Creed was doing. A lot of it  seemed to be about extending Cox’s life. Wasn’t the goal of hospice to  let nature take its course?

That’s not the goal, Creed said.  The difference between standard medical care and hospice is not the  difference between treating and doing nothing, she explained. The  difference was in your priorities. In ordinary medicine, the goal is to  extend life. We’ll sacrifice the quality of your existence now by  performing surgery, providing chemotherapy, putting you in intensive  care for the chance of gaining time later. Hospice deploys nurses,  doctors, and social workers to help people with a fatal illness have the fullest possible lives right now. That means focussing on objectives  like freedom from pain and discomfort, or maintaining mental awareness  for as long as possible, or getting out with family once in a while.  Hospice and palliative-care specialists aren’t much concerned about  whether that makes people’s lives longer or shorter.

Like many  people, I had believed that hospice care hastens death, because patients forgo hospital treatments and are allowed high-dose narcotics to combat pain. But studies suggest otherwise. In one, researchers followed 4,493 Medicare patients with either terminal cancer or congestive heart  failure. They found no difference in survival time between hospice and  non-hospice patients with breast cancer, prostate cancer, and colon  cancer. Curiously, hospice care seemed to extend survival for some  patients; those with pancreatic cancer gained an average of three weeks, those with lung cancer gained six weeks, and those with congestive  heart failure gained three months. The lesson seems almost Zen: you live longer only when you stop trying to live longer. When Cox was  transferred to hospice care, her doctors thought that she wouldn’t live  much longer than a few weeks. With the supportive hospice therapy she  received, she had already lived for a year.

Creed enters people’s  lives at a strange moment when they have understood that they have a  fatal illness but have not necessarily acknowledged that they are dying. I’d say only about a quarter have accepted their fate when they come  into hospice, she said. When she first encounters her patients, many  feel that they have simply been abandoned by their doctors. Ninety-nine per cent understand they’re dying, but one hundred per cent hope  they’re not, she says. They still want to beat their disease. The  initial visit is always tricky, but she has found ways to smooth things  over. A nurse has five seconds to make a patient like you and trust  you. It’s in the whole way you present yourself. I do not come in  saying, I’m so sorry.  Instead, it’s: I’m the hospice nurse, and  here’s what I have to offer you to make your life better. And I know we  don’t have a lot of time to waste.

That was how she started  with Dave Galloway, whom we visited after leaving Lee Cox’s home. He was forty-two years old. He and his wife, Sharon, were both Boston  firefighters. They had a three-year-old daughter. He had pancreatic  cancer, which had spread; his upper abdomen was now solid with tumor.  During the past few months, the pain had become unbearable at times, and he was admitted to the hospital several times for pain crises. At his  most recent admission, about a week earlier, it was found that the tumor had perforated his intestine. There wasn’t even a temporary fix for  this problem. The medical team started him on intravenous nutrition and  offered him a choice between going to the intensive-care unit and going  home with hospice. He chose to go home.

I wish we’ gotten  involved sooner, Creed told me. When she and the hospice’s supervising  doctor, Dr. JoAnne Nowak, evaluated Galloway upon his arrival at home,  he appeared to have only a few days left. His eyes were hollow. His  breathing was labored. Fluid swelled his entire lower body to the point  that his skin blistered and wept. He was almost delirious with abdominal pain.

They got to work. They set up a pain pump with a button  that let him dispense higher doses of narcotic than he had been allowed. They arranged for an electric hospital bed, so that he could sleep with his back raised. They also taught Sharon how to keep Dave clean,  protect his skin from breakdown, and handle the crises to come. Creed  told me that part of her job is to take the measure of a patient’s  family, and Sharon struck her as unusually capable. She was determined  to take care of her husband to the end, and, perhaps because she was a  firefighter, she had the resilience and the competence to do so. She did not want to hire a private-duty nurse. She handled everything, from the I.V. lines and the bed linens to orchestrating family members to lend a hand when she needed help.

Creed arranged for a specialized  comfort pack to be delivered by FedEx and stored in a  mini-refrigerator by Dave’s bed. It contained a dose of morphine for  breakthrough pain or shortness of breath, Ativan for anxiety attacks,  Compazine for nausea, Haldol for delirium, Tylenol for fever, and  atropine for drying up the upper-airway rattle that people can get in  their final hours. If any such problem developed, Sharon was instructed  to call the twenty-four-hour hospice nurse on duty, who would provide  instructions about which rescue medications to use and, if necessary,  come out to help.

Dave and Sharon were finally able to sleep  through the night at home. Creed or another nurse came to see him every  day, sometimes twice a day; three times that week, Sharon used the  emergency hospice line to help her deal with Dave’s pain crises or  hallucinations. After a few days, they were even able to go out to a  favorite restaurant; he wasn’t hungry, but they enjoyed just being  there, and the memories it stirred.

The hardest part so far,  Sharon said, was deciding to forgo the two-litre intravenous feedings  that Dave had been receiving each day. Although they were his only  source of calories, the hospice staff encouraged discontinuing them  because his body did not seem to be absorbing the nutrition. The  infusion of sugars, proteins, and fats made the painful swelling of his  skin and his shortness of breath worse and for what? The mantra was live for now. Sharon had balked, for fear that she’d be starving him. The  night before our visit, however, she and Dave decided to try going  without the infusion. By morning, the swelling was markedly reduced. He  could move more, and with less discomfort. He also began to eat a few  morsels of food, just for the taste of it, and that made Sharon feel  better about the decision.

When we arrived, Dave was making his  way back to bed after a shower, his arm around his wife’s shoulders and  his slippered feet taking one shuffling step at a time.

There’s nothing he likes better than a long hot shower, Sharon said. He’d live in the shower if he could.

Dave sat on the edge of his bed in fresh pajamas, catching his breath, and  then Creed spoke to him as his daughter, Ashlee, ran in and out of the  room in her beaded pigtails, depositing stuffed animals in her dad’s  lap.

How’s your pain on a scale of one to ten? Creed asked.

A six, he said.

Did you hit the pump?

He didn’t answer for a moment. I’m reluctant, he admitted.

Why? Creed asked.

It feels like defeat, he said. Defeat?

I don’t want to become a drug addict, he explained. I don’t want to need this.

Creed got down on her knees in front of him. Dave, I don’t know anyone who  can manage this kind of pain without the medication, she said. It’s  not defeat. You’ve got a beautiful wife and daughter, and you’re not  going to be able to enjoy them with the pain.

You’re right about that, he said, looking at Ashlee as she gave him a little horse. And he pressed the button.

Dave Galloway died one week later”at home, at peace, and surrounded by  family. A week after that, Lee Cox died, too. But, as if to show just  how resistant to formula human lives are, Cox had never reconciled  herself to the incurability of her illnesses. So when her family found  her in cardiac arrest one morning they followed her wishes and called  911 instead of the hospice service. The emergency medical technicians  and firefighters and police rushed in. They pulled off her clothes and  pumped her chest, put a tube in her airway and forced oxygen into her  lungs, and tried to see if they could shock her heart back. But such  efforts rarely succeed with terminal patients, and they did not succeed  with her.

Hospice has tried to offer a new ideal for how we die.  Although not everyone has embraced its rituals, those who have are  helping to negotiate an ars moriendi for our age. But doing so  represents a struggle”not only against suffering but also against the  seemingly unstoppable momentum of medical treatment.

Just before Thanksgiving of 2007, Sara Monopoli, her husband, Rich, and her  mother, Dawn Thomas, met with Dr. Marcoux to discuss the options she had left. By this point, Sara had undergone three rounds of chemotherapy  with limited, if any, effect. Perhaps Marcoux could have discussed what  she most wanted as death neared and how best to achieve those wishes.  But the signal he got from Sara and her family was that they wished to  talk only about the next treatment options. They did not want to talk  about dying.

Recently, I spoke to Sara’s husband and her parents.  Sara knew that her disease was incurable, they pointed out. The week  after she was given the diagnosis and delivered her baby, she spelled  out her wishes for Vivian’s upbringing after she was gone. She had told  her family on several occasions that she did not want to die in the  hospital. She wanted to spend her final moments peacefully at home. But  the prospect that those moments might be coming soon, that there might  be no way to slow the disease, was not something she or I wanted to discuss, her mother said.

Her father, Gary, and her twin sister,  Emily, still held out hope for a cure. The doctors simply weren’t  looking hard enough, they felt. I just couldn’t believe there wasn’t  something, Gary said. For Rich, the experience of Sara’s illness had  been disorienting: We had a baby. We were young. And this was so  shocking and so odd. We never discussed stopping treatment.

Marcoux took the measure of the room. With almost two decades of experience  treating lung cancer, he had been through many of these conversations.  He has a calm, reassuring air and a native Minnesotan’s tendency to  avoid confrontation or overintimacy. He tries to be scientific about  decisions.

I know that the vast majority of my patients are going to die of their disease, he told me. The data show that, after  failure of second-line chemotherapy, lung-cancer patients rarely get any added survival time from further treatments and often suffer  significant side effects. But he, too, has his hopes.

He told them that, at some point, “supportive care” was an option for them to think  about. But, he went on, there were also experimental therapies. He told  them about several that were under trial. The most promising was a  Pfizer drug that targeted one of the mutations found in her cancer™s  cells. Sara and her family instantly pinned their hopes on it. The drug  was so new that it didn™t even have a name, just a number”PF0231006”and  this made it all the more enticing.

There were a few hovering  issues, including the fact that the scientists didn™t yet know the safe  dose. The drug was only in a Phase I trial”that is, a trial designed to  determine the toxicity of a range of doses, not whether the drug worked. Furthermore, a test of the drug against her cancer cells in a petri  dish showed no effect. But Marcoux didn™t think that these were decisive obstacles”just negatives. The critical problem was that the rules of  the trial excluded Sara because of the pulmonary embolism she had  developed that summer. To enroll, she would need to wait two months, in  order to get far enough past the episode. In the meantime, he suggested  trying another conventional chemotherapy, called Navelbine. Sara began  the treatment the Monday after Thanksgiving.

It™s worth pausing to consider what had just happened. Step by step, Sara ended up on a fourth round of chemotherapy, one with a minuscule likelihood of altering the  course of her disease and a great likelihood of causing debilitating  side effects. An opportunity to prepare for the inevitable was forgone.  And it all happened because of an assuredly normal circumstance: a  patient and family unready to confront the reality of her disease.

I asked Marcoux what he hopes to accomplish for terminal lung-cancer  patients when they first come to see him. “I™m thinking, Can I get them a pretty good year or two out of this?” he said. “Those are my expectations. For me, the long tail for a patient like her is three to  four years.” But this is not what people want to hear. “They™re thinking ten to twenty years. You hear that time and time again. And I™d be the  same way if I were in their shoes.”

You™d think doctors would be  well equipped to navigate the shoals here, but at least two things get  in the way. First, our own views may be unrealistic. A study led by the  Harvard researcher Nicholas Christakis asked the doctors of almost five  hundred terminally ill patients to estimate how long they thought their  patient would survive, and then followed the patients. Sixty-three per  cent of doctors overestimated survival time. Just seventeen per cent  underestimated it. The average estimate was five hundred and thirty per  cent too high. And, the better the doctors knew their patients, the more likely they were to err.

Second, we often avoid voicing even  these sentiments. Studies find that although doctors usually tell  patients when a cancer is not curable, most are reluctant to give a  specific prognosis, even when pressed. More than forty per cent of  oncologists report offering treatments that they believe are unlikely to work. In an era in which the relationship between patient and doctor is increasingly miscast in retail terms”“the customer is always  right””doctors are especially hesitant to trample on a patient™s  expectations. You worry far more about being overly pessimistic than you do about being overly optimistic. And talking about dying is enormously fraught. When you have a patient like Sara Monopoli, the last thing you want to do is grapple with the truth. I know, because Marcoux wasn™t  the only one avoiding that conversation with her. I was, too.

Earlier that summer, a PET scan had revealed that, in addition to her lung cancer, she also had  thyroid cancer, which had spread to the lymph nodes of her neck, and I  was called in to decide whether to operate. This second, unrelated  cancer was in fact operable. But thyroid cancers take years to become  lethal. Her lung cancer would almost certainly end her life long before  her thyroid cancer caused any trouble. Given the extent of the surgery  that would have been required, and the potential complications, the best course was to do nothing. But explaining my reasoning to Sara meant  confronting the mortality of her lung cancer, something that I felt ill  prepared to do.

Sitting in my clinic, Sara did not seem  discouraged by the discovery of this second cancer. She seemed  determined. She™d read about the good outcomes from thyroid-cancer  treatment. So she was geared up, eager to discuss when to operate. And I found myself swept along by her optimism. Suppose I was wrong, I  wondered, and she proved to be that miracle patient who survived  metastatic lung cancer?

My solution was to avoid the subject  altogether. I told Sara that the thyroid cancer was slow-growing and  treatable. The priority was her lung cancer, I said. Let™s not hold up  the treatment for that. We could monitor the thyroid cancer and plan  surgery in a few months.

I saw her every six weeks, and noted her physical decline from one visit to the next. Yet, even in a wheelchair, Sara would always arrive smiling, makeup on and bangs bobby-pinned out  of her eyes. She™d find small things to laugh about, like the tubes that created strange protuberances under her dress. She was ready to try  anything, and I found myself focussing on the news about experimental  therapies for her lung cancer. After one of her chemotherapies seemed to shrink the thyroid cancer slightly, I even raised with her the  possibility that an experimental therapy could work against both her  cancers, which was sheer fantasy. Discussing a fantasy was easier”less  emotional, less explosive, less prone to misunderstanding”than  discussing what was happening before my eyes.

Between the lung  cancer and the chemo, Sara became steadily sicker. She slept most of the time and could do little out of the house. Clinic notes from December  describe shortness of breath, dry heaves, coughing up blood, severe  fatigue. In addition to the drainage tubes in her chest, she required  needle-drainage procedures in her abdomen every week or two to relieve  the severe pressure from the litres of fluid that the cancer was  producing there.

A CT scan in December showed that the lung  cancer was spreading through her spine, liver, and lungs. When we met in January, she could move only slowly and uncomfortably. Her lower body  had become swollen. She couldn’t speak more than a sentence without  pausing for breath. By the first week of February, she needed oxygen at  home to breathe. Enough time had elapsed since her pulmonary embolism,  however, that she could start on Pfizer’s experimental drug. She just  needed one more set of scans for clearance. These revealed that the  cancer had spread to her brain, with at least nine metastatic growths  across both hemispheres. The experimental drug was not designed to cross the blood-brain barrier. PF0231006 was not going to work.

And  still Sara, her family, and her medical team remained in battle mode.  Within twenty-four hours, Sara was scheduled to see a radiation  oncologist for whole-brain radiation to try to reduce the metastases. On February 12th, she completed five days of radiation treatment, which  left her immeasurably fatigued, barely able get out of bed. She ate  almost nothing. She weighed twenty-five pounds less than she had in the  fall. She confessed to Rich that, for the past two months, she had  experienced double vision and was unable to feel her hands.

Why didn’t you tell anyone? he asked her.

I just didn’t want to stop treatment, she said. They would make me stop.

She was given two weeks to recover her strength after the radiation. Then  she would be put on another experimental drug from a small biotech  company. She was scheduled to start on February 25th. Her chances were  rapidly dwindling. But who was to say they were zero?

In 1985, the paleontologist and writer Stephen Jay Gould published an extraordinary  essay entitled The Median Isn’t the Message,” after he had been given a diagnosis, three years earlier, of abdominal mesothelioma, a rare and  lethal cancer usually associated with asbestos exposure. He went to a  medical library when he got the diagnosis and pulled out the latest  scientific articles on the disease. “The literature couldn’t have been  more brutally clear: mesothelioma is incurable, with a median survival  of only eight months after discovery, he wrote. The news was  devastating. But then he began looking at the graphs of the  patient-survival curves.

Gould was a naturalist, and more inclined to notice the variation around the curve’s middle point than the middle point itself. What the naturalist saw was remarkable variation. The  patients were not clustered around the median survival but, instead,  fanned out in both directions. Moreover, the curve was skewed to the  right, with a long tail, however slender, of patients who lived many  years longer than the eight-month median. This is where he found solace. He could imagine himself surviving far out in that long tail. And he  did. Following surgery and experimental chemotherapy, he lived twenty  more years before dying, in 2002, at the age of sixty, from a lung  cancer that was unrelated to his original disease.

It has  become, in my view, a bit too trendy to regard the acceptance of death  as something tantamount to intrinsic dignity, he wrote in his 1985  essay. Of course I agree with the preacher of Ecclesiastes that there  is a time to love and a time to die ”and when my skein runs out I hope to face the end calmly and in my own way. For most situations, however, I  prefer the more martial view that death is the ultimate enemy and I find nothing reproachable in those who rage mightily against the dying of  the light.

I think of Gould and his essay every time I have a  patient with a terminal illness. There is almost always a long tail of  possibility, however thin. What’s wrong with looking for it? Nothing, it seems to me, unless it means we have failed to prepare for the outcome  that’s vastly more probable. The trouble is that we’ve built our medical system and culture around the long tail. We’ve created a  multitrillion-dollar edifice for dispensing the medical equivalent of  lottery tickets ”and have only the rudiments of a system to prepare  patients for the near-certainty that those tickets will not win. Hope is not a plan, but hope is our plan.

For Sara,  there would be no miraculous recovery, and, when the end approached,  neither she nor her family was prepared. I always wanted to respect her request to die peacefully at home, Rich later told me. But I didn’t  believe we could make it happen. I didn’t know how.

On the  morning of Friday, February 22nd, three days before she was to start her new round of chemo, Rich awoke to find his wife sitting upright beside  him, pitched forward on her arms, eyes wide, struggling for air. She was gray, breathing fast, her body heaving with each open-mouthed gasp. She looked as if she were drowning. He tried turning up the oxygen in her  nasal tubing, but she got no better.

I can’t do this, she said, pausing between each word. I’m scared.

He had no emergency kit in the refrigerator. No hospice nurse to call. And how was he to know whether this new development was fixable?

We’ll go to the hospital, he told her. When he asked if they should drive,  she shook her head, so he called 911, and told her mother, Dawn, who was in the next room, what was going on. A few minutes later, firemen  swarmed up the stairs to her bedroom, sirens wailing outside. As they  lifted Sara into the ambulance on a stretcher, Dawn came out in tears.

We’re going to get a hold of this, Rich told her. This was just another trip  to the hospital, he said to himself. The doctors would figure this out.

At the hospital, Sara was diagnosed with pneumonia. That troubled the  family, because they thought they’d done everything to keep infection at bay. They’d washed hands scrupulously, limited visits by people with  young children, even limited Sara’s time with baby Vivian if she showed  the slightest sign of a runny nose. But Sara’s immune system and her  ability to clear her lung secretions had been steadily weakened by the  rounds of radiation and chemotherapy as well as by the cancer.

In  another way, the diagnosis of pneumonia was reassuring, because it was  just an infection. It could be treated. The medical team started Sara on intravenous antibiotics and high-flow oxygen through a mask. The family gathered at her bedside, hoping for the antibiotics to work. This could be reversible, they told one another. But that night and the next  morning her breathing only grew more labored.

I can’t think of a single funny thing to say, Emily told Sara as their parents looked on.

Neither can I, Sara murmured. Only later did the family realize that those  were the last words they would ever hear from her. After that, she began to drift in and out of consciousness. The medical team had only one  option left: to put her on a ventilator. Sara was a fighter, right? And  the next step for fighters was to escalate to intensive care.

This is a modern tragedy, replayed millions of times over. When there is no  way of knowing exactly how long our skeins will run and when we imagine  ourselves to have much more time than we do our every impulse is to  fight, to die with chemo in our veins or a tube in our throats or fresh  sutures in our flesh. The fact that we may be shortening or worsening  the time we have left hardly seems to register. We imagine that we can  wait until the doctors tell us that there is nothing more they can do.  But rarely is there nothing more that doctors can do. They can  give toxic drugs of unknown efficacy, operate to try to remove part of  the tumor, put in a feeding tube if a person can’t eat: there’s always  something. We want these choices. We don’t want anyone, certainly not  bureaucrats or the marketplace, to limit them. But that doesn’t mean we  are eager to make the choices ourselves. Instead, most often, we make no choice at all. We fall back on the default, and the default is: Do  Something. Is there any way out of this?

In late 2004, executives  at Aetna, the insurance company, started an experiment. They knew that  only a small percentage of the terminally ill ever halted efforts at  curative treatment and enrolled in hospice, and that, when they did, it  was usually not until the very end. So Aetna decided to let a group of  policyholders with a life expectancy of less than a year receive hospice services without forgoing other treatments. A patient like Sara  Monopoli could continue to try chemotherapy and radiation, and go to the hospital when she wished but also have a hospice team at home focussing on what she needed for the best possible life now and for that morning  when she might wake up unable to breathe. A two-year study of this  concurrent care” program found that enrolled patients were much more  likely to use hospice: the figure leaped from twenty-six per cent to  seventy per cent. That was no surprise, since they weren’t forced to  give up anything. The surprising result was that they did give up  things. They visited the emergency room almost half as often as the  control patients did. Their use of hospitals and I.C.U.s dropped by more than two-thirds. Over-all costs fell by almost a quarter.

This  was stunning, and puzzling: it wasn’t obvious what made the approach  work. Aetna ran a more modest concurrent-care program for a broader  group of terminally ill patients. For these patients, the traditional  hospice rules applied n order to qualify for home hospice, they had to  give up attempts at curative treatment. But, either way, they received  phone calls from palliative-care nurses who offered to check in  regularly and help them find services for anything from pain control to  making out a living will. For these patients, too, hospice enrollment  jumped to seventy per cent, and their use of hospital services dropped  sharply. Among elderly patients, use of intensive-care units fell by  more than eighty-five per cent. Satisfaction scores went way up. What  was going on here? The program’s leaders had the impression that they  had simply given patients someone experienced and knowledgeable to talk  to about their daily needs. And somehow that was enough just talking.

The explanation strains credibility, but evidence for it has grown in  recent years. Two-thirds of the terminal-cancer patients in the Coping  with Cancer study reported having had no discussion with their doctors  about their goals for end-of-life care, despite being, on average, just  four months from death. But the third who did were far less likely to  undergo cardiopulmonary resuscitation or be put on a ventilator or end  up in an intensive-care unit. Two-thirds enrolled in hospice. These  patients suffered less, were physically more capable, and were better  able, for a longer period, to interact with others. Moreover, six months after the patients died their family members were much less likely to  experience persistent major depression. In other words, people who had  substantive discussions with their doctor about their end-of-life  preferences were far more likely to die at peace and in control of their situation, and to spare their family anguish.

Can mere  discussions really do so much? Consider the case of La Crosse,  Wisconsin. Its elderly residents have unusually low end-of-life hospital costs. During their last six months, according to Medicare data, they  spend half as many days in the hospital as the national average, and  there’s no sign that doctors or patients are halting care prematurely.  Despite average rates of obesity and smoking, their life expectancy  outpaces the national mean by a year.

I spoke to Dr. Gregory  Thompson, a critical-care specialist at Gundersen Lutheran Hospital,  while he was on I.C.U. duty one recent evening, and he ran through his  list of patients with me. In most respects, the patients were like those found in any I.C.U terribly sick and living through the most perilous  days of their lives. There was a young woman with multiple organ failure from a devastating case of pneumonia, a man in his mid-sixties with a  ruptured colon that had caused a rampaging infection and a heart attack. Yet these patients were completely different from those in other  I.C.U.s I’d seen: none had a terminal disease; none battled the final  stages of metastatic cancer or untreatable heart failure or dementia.

To understand La Crosse, Thompson said, you had to go back to 1991, when  local medical leaders headed a systematic campaign to get physicians and patients to discuss end-of-life wishes. Within a few years, it became  routine for all patients admitted to a hospital, nursing home, or  assisted-living facility to complete a multiple-choice form that boiled  down to four crucial questions. At this moment in your life, the form  asked:

1. Do you want to be resuscitated if your heart stops?
2. Do you want aggressive treatments such as intubation and mechanical ventilation?
3. Do you want antibiotics?
4. Do you want tube or intravenous feeding if you can’t eat on your own?

By 1996, eighty-five per cent of La Crosse residents who died had written  advanced directives, up from fifteen per cent, and doctors almost always knew of and followed the instructions. Having this system in place,  Thompson said, has made his job vastly easier. But it’s not because the  specifics are spelled out for him every time a sick patient arrives in  his unit.

These things are not laid out in stone, he told me. Whatever the yes/no answers people may put on a piece of paper, one will find nuances and complexities in what they mean. But, instead of  having the discussion when they get to the I.C.U., we find many times it has already taken place.

Answers to the list of questions  change as patients go from entering the hospital for the delivery of a  child to entering for complications of Alzheimer’s disease. But, in La  Crosse, the system means that people are far more likely to have talked  about what they want and what they don’t want before they and their  relatives find themselves in the throes of crisis and fear. When wishes  aren’t clear, Thompson said, families have also become much more  receptive to having the discussion. The discussion, not the list, was  what mattered most. Discussion had brought La Crosse’s end-of-life costs down to just over half the national average. It was that simple and  that complicated.

One Saturday morning last  winter, I met with a woman I had operated on the night before. She had  been undergoing a procedure for the removal of an ovarian cyst when the  gynecologist who was operating on her discovered that she had metastatic colon cancer. I was summoned, as a general surgeon, to see what could  be done. I removed a section of her colon that had a large cancerous  mass, but the cancer had already spread widely. I had not been able to  get it all. Now I introduced myself. She said a resident had told her  that a tumor was found and part of her colon had been excised.

Yes, I said. I’d been able to take out the main area of involvement. I  explained how much bowel was removed, what the recovery would be  like everything except how much cancer there was. But then I remembered  how timid I’d been with Sara Monopoli, and all those studies about how  much doctors beat around the bush. So when she asked me to tell her more about the cancer, I explained that it had spread not only to her  ovaries but also to her lymph nodes. I said that it had not been  possible to remove all the disease. But I found myself almost  immediately minimizing what I’d said. We’ll bring in an oncologist, I  hastened to add. Chemotherapy can be very effective in these  situations.

She absorbed the news in silence, looking down at the blankets drawn over her mutinous body. Then she looked up at me. Am I  going to die?

I flinched. No, no, I said. Of course not.

A few days later, I tried again. We don’t have a cure, I explained.  But treatment can hold the disease down for a long time. The goal, I  said, was to prolong your life as much as possible.

I’ve seen  her regularly in the months since, as she embarked on chemotherapy. She  has done well. So far, the cancer is in check. Once, I asked her and her husband about our initial conversations. They don’t remember them very  fondly. That one phrase that you used prolong your life, it just . .  .She didn’t want to sound critical.

It was kind of blunt, her husband said.

It sounded harsh, she echoed. She felt as if I’d dropped her off a cliff.

I spoke to Dr. Susan Block, a palliative-care specialist at my hospital  who has had thousands of these difficult conversations and is a  nationally recognized pioneer in training doctors and others in managing end-of-life issues with patients and their families. “You have to  understand,” Block told me. “A family meeting is a procedure, and it  requires no less skill than performing an operation.”

One basic  mistake is conceptual. For doctors, the primary purpose of a discussion  about terminal illness is to determine what people want”whether they  want chemo or not, whether they want to be resuscitated or not, whether  they want hospice or not. They focus on laying out the facts and the  options. But that’s a mistake, Block said.

A large part of the  task is helping people negotiate the overwhelming anxiety about  death, anxiety about suffering, anxiety about loved ones, anxiety about  finances, she explained. There are many worries and real terrors. No  one conversation can address them all. Arriving at an acceptance of  one’s mortality and a clear understanding of the limits and the  possibilities of medicine is a process, not an epiphany.

There is  no single way to take people with terminal illness through the process,  but, according to Block, there are some rules. You sit down. You make  time. You’re not determining whether they want treatment X versus Y.  You’re trying to learn whey’s most important to them under the  circumstances, so that you can provide information and advice on the  approach that gives them the best chance of achieving it. This requires  as much listening as talking. If you are talking more than half of the  time, Block says, you’re talking too much.

The words you use  matter. According to experts, you shouldn’t say, I’m sorry things  turned out this way, for example. It can sound like pity. You should  say, I wish things were different. You don’t ask, What do you want  when you are dying? You ask, If time becomes short, what is most  important to you?

Block has a list of items that she aims to  cover with terminal patients in the time before decisions have to be  made: what they understand their prognosis to be; what their concerns  are about what lies ahead; whom they want to make decisions when they  can’t; how they want to spend their time as options become limited; what kinds of trade-offs they are willing to make.

Ten years ago, her  seventy-four-year-old father, Jack Block, a professor emeritus of  psychology at the University of California at Berkeley, was admitted to a San Francisco hospital with symptoms from what proved to be a mass  growing in the spinal cord of his neck. She flew out to see him. The  neurosurgeon said that the procedure to remove the mass carried a  twenty-per-cent chance of leaving him quadriplegic, paralyzed from the  neck down. But without it he had a hundred-per-cent chance of becoming  quadriplegic.

The evening before surgery, father and daughter  chatted about friends and family, trying to keep their minds off what  was to come, and then she left for the night. Halfway across the Bay  Bridge, she recalled, I realized, Oh, my God, I don’t know what he  really wants. He’d made her his health-care proxy, but they had  talked about such situations only superficially. So she turned the car  around.

Going back in was really uncomfortable, she said. It  made no difference that she was an expert in end-of-life discussions. I just felt awful having the conversation with my dad. But she went  through her list. She told him,  I need to understand how much you’re  willing to go through to have a shot at being alive and what level of  being alive is tolerable to you. We had this quite agonizing  conversation where he said and this totally shocked me.Well, if I’m  able to eat chocolate ice cream and watch football on TV, then I’m  willing to stay alive. I’m willing to go through a lot of pain if I have a shot at that.

I would never have expected him to say that, Block went on. I mean, he’s a professor emeritus. He’s never watched a  football game in my conscious memory. The whole picture it wasn’t the  guy I thought I knew. But the conversation proved critical, because  after surgery he developed bleeding in the spinal cord. The surgeons  told her that, in order to save his life, they would need to go back in. But he had already become nearly quadriplegic and would remain severely disabled for many months and possibly forever. What did she want to do?

I had three minutes to make this decision, and, I realized, he had  already made the decision. She asked the surgeons whether, if her  father survived, he would still be able to eat chocolate ice cream and  watch football on TV. Yes, they said. She gave the O.K. to take him back to the operating room.

If I had not had that conversation with  him, she told me, my instinct would have been to let him go at that  moment, because it just seemed so awful. And I would have beaten myself  up. Did I let him go too soon? Or she might have gone ahead and sent  him to surgery, only to find as occurred that he survived only to go  through what proved to be a year of very horrible rehab and  disability. I would have felt so guilty that I condemned him to that,  she said. But there was no decision for me to make. He had decided.

During the next two years, he regained the ability to walk short distances. He required caregivers to bathe and dress him. He had difficulty  swallowing and eating. But his mind was intact and he had partial use of his hands enough to write two books and more than a dozen scientific  articles. He lived for ten years after the operation. This past year,  however, his difficulties with swallowing advanced to the point where he could not eat without aspirating food particles, and he cycled between  hospital and rehabilitation facilities with the pneumonias that  resulted. He didn’t want a feeding tube. And it became evident that the  battle for the dwindling chance of a miraculous recovery was going to  leave him unable ever to go home again. So, this past January, he  decided to stop the battle and go home.

We started him on hospice care, Block said. We treated his choking and kept him comfortable.  Eventually, he stopped eating and drinking. He died about five days  later.

Susan Block and her father had the  conversation that we all need to have when the chemotherapy stops  working, when we start needing oxygen at home, when we face high-risk  surgery, when the liver failure keeps progressing, when we become unable to dress ourselves. I’ve heard Swedish doctors call it a breakpoint  discussion, a systematic series of conversations to sort out when they  need to switch from fighting for time to fighting for the other things  that people value, being with family or travelling or enjoying chocolate  ice cream. Few people have this discussion, and there is good reason for anyone to dread these conversations. They can unleash difficult  emotions. People can become angry or overwhelmed. Handled poorly, the  conversations can cost a person’s trust. Handled well, they can take  real time.

I spoke to an oncologist who told me about a  twenty-nine-year-old patient she had recently cared for who had an  inoperable brain tumor that continued to grow through second-line  chemotherapy. The patient elected not to attempt any further  chemotherapy, but getting to that decision required hours of  discussion for this was not the decision he had expected to make. First, the oncologist said, she had a discussion with him alone. They reviewed the story of how far he’d come, the options that remained. She was  frank. She told him that in her entire career she had never seen  third-line chemotherapy produce a significant response in his type of  brain tumor. She had looked for experimental therapies, and none were  truly promising. And, although she was willing to proceed with  chemotherapy, she told him how much strength and time the treatment  would take away from him and his family.

He did not shut down or  rebel. His questions went on for an hour. He asked about this therapy  and that therapy. And then, gradually, he began to ask about what would  happen as the tumor got bigger, the symptoms he’d have, the ways they  could try to control them, how the end might come.

The oncologist next met with the young man together with his family. That discussion  didn’t go so well. He had a wife and small children, and at first his  wife wasn’t ready to contemplate stopping chemo. But when the oncologist asked the patient to explain in his own words what they’d discussed,  she understood. It was the same with his mother, who was a nurse.  Meanwhile, his father sat quietly and said nothing the entire time.

A few days later, the patient returned to talk to the oncologist. There should be something. There must be something, he said. His father had shown him reports of cures on  the Internet. He confided how badly his father was taking the news. No  patient wants to cause his family pain. According to Block, about  two-thirds of patients are willing to undergo therapies they don’t want  if that is what their loved ones want.

The oncologist went to the father’s home to meet with him. He had a sheaf of possible trials and  treatments printed from the Internet. She went through them all. She was willing to change her opinion, she told him. But either the treatments  were for brain tumors that were very different from his son’s or else he didn’t qualify. None were going to be miraculous. She told the father  that he needed to understand: time with his son was limited, and the  young man was going to need his father’s help getting through it.

The oncologist noted wryly how much easier it would have been for her just  to prescribe the chemotherapy. But that meeting with the father was the turning point, she said. The patient and the family opted for hospice. They had more than a month together before he died. Later, the father  thanked the doctor. That last month, he said, the family simply focussed on being together, and it proved to be the most meaningful time they’d  ever spent.

Given how prolonged some of these conversations have  to be, many people argue that the key problem has been the financial  incentives: we pay doctors to give chemotherapy and to do surgery, but  not to take the time required to sort out when doing so is unwise. This  certainly is a factor. (The new health-reform act was to have added  Medicare coverage for these conversations, until it was deemed funding  for death panels and stripped out of the legislation.) But the issue  isn’t merely a matter of financing. It arises from a still unresolved  argument about what the function of medicine really is what, in other  words, we should and should not be paying for doctors to do.

The  simple view is that medicine exists to fight death and disease, and that is, of course, its most basic task. Death is the enemy. But the enemy  has superior forces. Eventually, it wins. And, in a war that you cannot  win, you don’t want a general who fights to the point of total  annihilation. You don’t want Custer. You want Robert E. Lee, someone who knew how to fight for territory when he could and how to surrender when he couldn’t, someone who understood that the damage is greatest if all  you do is fight to the bitter end.

More often, these days,  medicine seems to supply neither Custers nor Lees. We are increasingly  the generals who march the soldiers onward, saying all the while, You  let me know when you want to stop. All-out treatment, we tell the  terminally ill, is a train you can get off at any time, just say when.  But for most patients and their families this is asking too much. They  remain riven by doubt and fear and desperation; some are deluded by a  fantasy of what medical science can achieve. But our responsibility, in  medicine, is to deal with human beings as they are. People die only  once. They have no experience to draw upon. They need doctors and nurses who are willing to have the hard discussions and say what they have  seen, who will help people prepare for what is to come and to escape a  warehoused oblivion that few really want.

Sara  Monopoli had had enough discussions to let her family and her oncologist know that she did not want hospitals or I.C.U.s at the end, but not  enough to have learned how to achieve this. From the moment she arrived  in the emergency room that Friday morning in February, the train of  events ran against a peaceful ending. There was one person who was  disturbed by this, though, and who finally decided to intercede, Chuck  Morris, her primary physician. As her illness had progressed through the previous year, he had left the decision-making largely to Sara, her  family, and the oncology team. Still, he had seen her and her husband  regularly, and listened to their concerns. That desperate morning,  Morris was the one person Rich called before getting into the ambulance. He headed to the emergency room and met Sara and Rich when they  arrived.

Morris said that the pneumonia might be treatable. But,  he told Rich, I’m worried this is it. I’m really worried about her.  And he told him to let the family know that he said so.

Upstairs  in her hospital room, Morris talked with Sara and Rich about the ways in which the cancer had been weakening her, making it hard for her body to fight off infection. Even if the antibiotics halted the infection, he  said, he wanted them to remember that there was nothing that would stop  the cancer.

Sara looked ghastly, Morris told me. She was so short of breath. It was uncomfortable to watch. I still remember the  attending the oncologist who admitted her for the pneumonia treatment.  He was actually kind of rattled about the whole case, and for him to be rattled is saying something.

After her parents arrived, Morris  talked with them, too, and when they were finished Sara and her family  agreed on a plan. The medical team would continue the antibiotics. But  if things got worse they would not put her on a breathing machine. They  also let him call the palliative-care team to visit. The team prescribed a small dose of morphine, which immediately eased her breathing. Her  family saw how much her suffering diminished, and suddenly they didn’t  want any more suffering. The next morning, they were the ones to hold  back the medical team.

They wanted to put a catheter in her, do this other stuff to her, her mother, Dawn, told me. I said, No. You aren’t going to do anything to her. I didn’t care if she wet her  bed. They wanted to do lab tests, blood-pressure measurements, finger  sticks. I was very uninterested in their bookkeeping. I went over to see the head nurse and told them to stop.

In the previous three  months, almost nothing we’d done to Sara none of our chemotherapy and  scans and tests and radiation had likely achieved anything except to  make her worse. She may well have lived longer without any of it. At  least she was spared at the very end.

That day, Sara fell into  unconsciousness as her body continued to fail. Through the next night,  Rich recalled, there was this awful groaning There is no prettifying  death. Whether it was with inhaling or exhaling, I don’t remember, but  it was horrible, horrible, horrible to listen to.

Her father and her sister still thought that she might rally. But when the others had  stepped out of the room, Rich knelt down weeping beside Sara and  whispered in her ear. It’s O.K. to let go, he said. You don’t have to fight anymore. I will see you soon.

Later that morning, her breathing changed, slowing. At 9:45 A.M., Rich said, Sara just kind of startled. She let a long breath out. Then she just stopped.

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"60,000 Reichsmark is what this person
suffering from hereditary defects costs
the community during his lifetime.
Fellow Germans, that is your money,
too. Read 'A New People', the monthly
magazine of the Bureau for Race
Politics of the Nazi Party.