The PCIA merely instructs physician to discuss prognosis with seriously ill patients and ask if they would like information on hospice, palliative care and appropriate end-of-life options. But this simple requirement runs counter to an endemic medical culture that keeps prognoses secret and imposes painful, intensive technology on uninformed, dying patients.

Evidence of woefully uninformed patients has been clear for years. In 2002 researchers reported in the Annals of Internal Medicine that even if patients with cancer requested survival estimates, physicians would provide a frank estimate only 37% of the time. These authors reported “In general, we found that the propensity to avoid frank disclosure was relatively homogeneously distributed among patients and physicians. That is, most types of physicians tend to avoid frank disclosure for most types of patients with cancer.” In 2008 only 16% of oncologists told researchers they would discuss a terminal prognosis, even “if my patients ask about it.”

The Palliative Care Information Act changes all that. The duty to offer information arises when the physician perceives a patient is likely to die within six months, with or without disease-focused treatment. Having an affirmative duty will force the analysis of prognosis, and prompt the conversation 83% of patients say they want.

I would remind anyone squeamish about state lawmakers telling doctors how to practice medicine that the Medical establishment is notoriously protective of its prerogatives of secrecy and dominance in the doctor-patient relationship. Organized Medicine does not willingly assign decision-making power to mere patients. We would not have the doctrine of informed consent were it not for courts asserting the right for patients to understand alternatives and risks prior to consenting to surgery and other procedures. The 1972 D.C. Appellate case Canterbury v. Spence, first set forth the duty to inform. We would have no standards for the scope of pre-consent information, were it not for state legislatures codifying informed consent requirements throughout the nation.

The Medical Society of New York apparently sensed a threat in the PCIA and vehemently opposed it. In an embarrassingly revealing letter to colleagues, Society president Leah McCormack deplores the destructive impact palliative care information will have on “a patient’s spirit.” Dr. McCormack asserts, “Mandating physicians to offer terminally ill patients information about end-of-life care options may undermine patients’ beliefs and convictions that they can prevail against the disease and could undercut their confidence in the course of treatment and in their physician.”

Recall the conversation Dr. McCormack rejects occurs only after the physician determines the patient will die within six months, regardless of choice of therapy. So it seems her preference would be to withhold prognostic information, raise false hope for cure and entice patients by promoting “confidence” in therapies of ever-diminishing benefit. All the while she would withhold information about palliative therapies shown to prolong life by an average of three months in lung cancer patients. And she would do this in the service of the patient’s ‘spirit’ — or rather, in the service of her particular beliefs about the patient’s spirit.

A physician presuming to know the needs of my spirit, and acting on that presumption, is a scary prospect. I think it would scare most patients, dying or not. And as if to underscore the legitimacy of this fear, last month’s Journal of General Internal Medicine includes a study entitled “How Well Do Doctors Know Their Patients?” Centering on health beliefs, it reveals doctors to be generally clueless about their patients’ beliefs and values. A sample of 29 physicians and 207 patients from 10 clinics demonstrates physicians’ perceptions of their patients’ beliefs are usually wrong, because physicians assume their patients’ beliefs align with their own.

All this research underscores the finding published three years ago in the New England Journal of Medicine that 40 million Americans receive care from physicians who don’t believe they are obligated to disclose information about medically available treatments they consider objectionable. One hundred million have doctors who feel no obligation to refer them to another provider for such treatments. Total sedation at the end of life emerged as one such treatment likely to be kept secret from patients. Compassion & Choices’ pursuit of laws protecting patients from such “doctors of conscience” began with that study.

This modest Palliative Care Information Act certainly has its work cut out for it. The habits, culture, presumptions and prerogatives of a powerful profession conspire to keep dying patients uninformed, even as they endure needless suffering from a futile, aggressive and brutal battle against mortality. As it happens, New York is exactly the place to start. Graduate medical education is big business in New York, where giant teaching hospitals establish medical practice patterns of a lifetime. At least one in six American physicians receives their training there. Now that training will include the duty to start a conversation about realistic prognosis, palliative care and end-of-life decisions. This gives me hope.

The patient, in his late 70s, had survived prostate cancer and had a new diagnosis of leukemia. A few days before, he’d been healthy and fine, but now his white blood cell count was so high that it was clogging his circulatory system, making it hard for him to breathe.

We brought his white count down and relieved his shortness of breath. At that point, he could have opted for palliative care and gone home on hospice with a decent enough quality of life to enjoy what little time he had left. However, the patient, encouraged by his family and urged on by his oncologist, chose aggressive treatment instead.

This is a hard case. In his recent New Yorker article “Letting Go,” Dr. Atul Gawande explains how the first impulse of doctors, patients and family members to “fight” cancer or other serious illnesses makes it very difficult to have honest discussions of what treatment can and cannot do.

I understand why physicians find these conversations difficult, why it’s preferable to focus on the good we can possibly accomplish rather than the likely futility of the struggle.

But there’s another story to be told in these cases, and it’s usually the nurse who’s the observer of that narrative: the suffering caused by these well-intentioned treatments. Chemo was risky for this patient because of his age and medical history, and the damage done was unbelievably bad.

The problems began when cells killed by the chemotherapy spilled their contents, overloading my patient’s kidneys and throwing him into renal failure. The intravenous fluids he’d needed had been too much for his circulatory system, and he developed heart failure, too.

One morning, I came in with his pills, and he said, “You’re doing too much. I can’t take it.” The next week, he was on dialysis, but it wasn’t working, and his entire lower body was hugely swollen with fluid. That day, he accosted me with, “What the hell are you doing to me?”

Both times, I told the medical team what he’d said and asked whether it was ethical to continue chemotherapy. Several members of the team shared my concerns, and as a group, we talked the situation over with the attending doctor. Our view was that the treatments were eroding the patient’s quality of life with little promise of good in return.

The attending physician, whom I know to be conscientious and caring, disagreed, as did the patient’s family. When the doctor prodded the patient, saying, “You want to keep going, right? Right?” the patient himself concurred, “Yes, let’s keep going.”

So the chemo finished. Then, blood began to appear in the patient’s urine. His bladder was brittle because of the radiation treatments he’d had for prostate cancer, and because of the chemo, he had too few platelets. Without enough platelets, that fragile tissue would not stop bleeding, but it also formed blood clots in his bladder that caused excruciating pain.

Watching this patient suffer, not from his disease but because of what we did to him in the name of helping him, was agonizing. He’d wanted to “keep going,” to “keep on fighting,” but what did he really mean?

Always when I hear these phrases applied to oncology patients, I think of Peter Weir’s 1981 film “Gallipoli.” The film portrays two Australian sprinters, Archy and Frank, who enlist together during World War I and end up fighting the Turkish army at the Battle of Gallipoli.

A lot of soldiers died during the Gallipoli campaign, and the end of the film dramatizes a real battle in which four brigades of Australian soldiers were sent out of the trenches to certain death.

Frank is chosen to be a runner, a deliverer of messages during the battle, and he gets an order to call off the assault once it’s clear that it’s not a fight but a massacre. However, Frank can’t run quickly enough to get the hold order to Archy’s trench in time, and the signal to attack is given. Archy comes up out of the trench running as fast as he can, alone, chest forward, until the Turkish machine guns mow him down.

The wasteful sacrifices of war and the pointlessness of my patient’s suffering share some obvious parallels here, but there’s a deeper lesson as well. Archy and Frank were soldiers; my patient was not. They made a choice when they enlisted, but my patient was never given his real choice, between aggressive treatment that might do more harm than good and getting just enough treatment to keep him stable and allow him to go home to be with the people he loved.

The very real benefits of such a focus on palliative care were documented in the August 19 issue of the New England Journal of Medicine. Patients with newly diagnosed lung cancer who received palliative care in addition to chemotherapy claimed an improved quality of life and lived more than 2½ months longer than than those who had no such care.

My patient’s decision to “keep fighting” seemed to be based on a misperception of what medicine could accomplish and of what the personal costs of our treatments would be. Indeed, a month after being admitted, swollen, breathless, bleeding and in pain, with his leukemia as robust as ever, he went on hospice in the hospital and died.

In “Letting Go,” Gawande says we don’t want Gen. George Custer as a model in medicine but more Robert E. Lee. But I would argue that conjuring a general to guide patients faced with serious illness is an embrace of the wrong ideal. Patients are not battlegrounds, and practicing medicine is not a war. This patient needed thoughtful supportive care, not our ineffectual treatments that tore him up from the inside out as surely as any machine gun.

Editor’s note: Theresa Brown is an oncology nurse in Pennsylvania. She is a leading contributor to The New York Times’ blog Well. She is the author of “Critical Care: A New Nurse Faces Death, Life, and Everything in Between.”

The opinions expressed in this commentary are solely those of Theresa Brown.

Our Consultation program began seventeen years ago, in 1993. Back then common wisdom said anyone offering concrete information about how to achieve a peaceful and humane death would soon be prosecuted and jailed for assisting a suicide.  Today’s Compassion & Choices Consultation staff and volunteers stand in a long line of courageous, compassionate people who put themselves and their very freedom on the line to offer choices to those suffering beyond tolerance.

Our reach is vast and our impact is great. From coast to coast and border to border patients empowered by the information and support from us approach their doctors and receive what they need. Sometimes it’s better treatment for distressing symptoms. Sometimes it’s relief from painful and burdensome treatments that were neither extending their lives life nor improving its quality. Sometimes it’s discontinuation of the thing that prolongs the dying process, like a cardiac pacemaker or the cortisone that checks brain swelling. Sometimes it is a prescription for medication, accumulated over several months until a life-ending dose is obtained in hand.  Always, always, there are options — transparent when possible, discrete when necessary.

Each time a physician participates, she learns it’s OK to speak frankly with dying patients. Each time a patient becomes empowered with choices, his medical team and family witness the lifting of anxiety and the psychological transformation that replaces fear with freedom to enjoy life again.

From the beginning we never saw our service separate from, or in conflict with, hospice and palliative medicine. Our goal is always to help clients get medicine to work for instead of against their deepest wishes.  And in the process, hospice by hospice, town by town, clinic by clinic, doctor by doctor, nurse by nurse, slowly but undeniably, medicine is changing.  Seventeen years ago it was uncommon for a physician to agree to write a barbiturate prescription, with the understanding of its intended purpose if suffering became unbearable. Now physicians do write these prescriptions, knowing understand their patient may not even use it, but just wants to have it for peace of mind.

Our own End-of-Life Consultation program models that practice. We’ve been urging medicine to do right by dying patients and demonstrating how it’s done for seventeen years. People will probably always look to us for information and support to begin their decision-making process. But in decades to come, we know we will not be the primary providers who meet the need. Medicine will rise to the challenge and will deliver not only cures for disease, but also palliative support, choice, control, empowerment and spiritual meaning when cure is not to be had.

In a study that sheds new light on the effects of end-of-life care, doctors have found that patients with terminal lung cancer who began receiving palliative care immediately upon diagnosis not only were happier, more mobile and in less pain as the end neared — but they also lived nearly three months longer.

The findings, published online Wednesday by The New England Journal of Medicine, confirmed what palliative care specialists had long suspected. The study also, experts said, cast doubt on the decision to strike end-of-life provisions from the health care overhaul passed last year.

“It shows that palliative care is the opposite of all that rhetoric about ‘death panels,’ ” said Dr. Diane E. Meier, director of the Center to Advance Palliative Care at Mount Sinai School of Medicine and co-author of an editorial in the journal accompanying the study. “It’s not about killing Granny; it’s about keeping Granny alive as long as possible — with the best quality of life.”

In the three-year study, 151 patients with fast-growing lung cancer at Massachusetts General, one of the nation’s top hospitals, were randomly assigned to get either oncology treatment alone or oncology treatment with palliative care — pain relief and other measures intended to improve a patient’s quality of life. They were followed until the end of 2009, by which time about 70 percent were dead.

Those getting palliative care from the start, the authors said, reported less depression and happier lives as measured on scales for pain, nausea, mobility, worry and other problems. Moreover, even though substantially fewer of them opted for aggressive chemotherapy as their illnesses worsened and many more left orders that they not be resuscitated in a crisis, they typically lived almost three months longer than the group getting standard care, who lived a median of nine months.

Doctors and patients “traditionally see palliative care as something extended to a hospitalized patient in the last week of life,” said Dr. Jennifer S. Temel, an oncologist and author of the paper. “We thought it made sense to start them at the time of diagnosis. And we were thrilled to see such a huge impact. It shows that palliative care and cancer care aren’t mutually exclusive.”

Dr. Atul Gawande, a Harvard Medical School surgeon and writer who just published a long article in The New Yorker about hospitalized patients’ suffering before death, called the study “amazing.”

“The field was crying out for a randomized trial,” he added.

Although the study could not determine why the patients lived longer, the authors and other experts had several theories: depression is known to shorten life, and patients whose pain is treated often sleep better, eat better and talk more with relatives. Also, hospitals are dangerous places for very sick people; they may get fatal blood infections, pneumonia or bedsores, or simply be overwhelmed by the powerful drugs and radiation attacking their cancer.

Saying the study was “of critical importance,” Dr. R. Sean Morrison, president of the American Academy of Hospice and Palliative Medicine, said it was the “first concrete evidence of what a lot of us have seen in our practices — when you control pain and other symptoms, people not only feel better, they live longer.”

There is sometimes tension between medical specialties, since surgeons and oncologists often view cancer as a battle, while palliative care specialists are seen as “giving up.”

Palliative care typically begins with a long conversation about what the patient with a terminal diagnosis wants out of his remaining life. It includes the options any oncologist addresses: surgery, chemotherapy and radiation and their side effects. But it also includes how much suffering a patient wishes to bear, effects on the family, and legal, insurance and religious issues. Teams focus on controlling pain, nausea, swelling, shortness of breath and other side effects; they also address patients’ worries and make sure they have help with making meals, dressing and bathing when not hospitalized.

Hospice care is intensive palliative care including home nursing, but insurers and Medicare usually cover it only if the patient abandons medical treatment and two doctors certify that death is less than six months away.

During the debate over President Obama’s 2009 health care bill, provisions to have Medicare and insurers pay for optional consultations with doctors on palliative and hospice care led to rumors, spread by talk-show hosts like Rush Limbaugh and Glenn Beck and by the former vice-presidential candidate Sarah Palin, that the bill empowered “death panels” that would “euthanize” elderly Americans.

Legislators eventually removed the provisions. In practice, Medicare and private insurers do pay for some palliative care, said Dr. Gail Austin Cooney, a former president of the palliative medicine academy. “But it’s piecemeal,” she said. “The billing is complicated, and for many physicians that’s enough of a deterrent to not bother.”

Dr. Cooney herself had such care along with surgery and chemotherapy for ovarian cancer in 2008.

“I decided I wanted every drop of chemotherapy they could give me, and it was very painful, dumping the drugs directly into my belly,” she said. She needed powerful painkillers, and also chose alternative-medicine options like acupuncture and “energy work” for nausea and fatigue.

“I’m rigid — I had my last chemo treatment on Christmas Eve because I wanted it on the day I was due for it,” she said. “But I couldn’t have completed the program without the psychosocial support.”

Palliative care experts now want to study patients with other cancers, heart disease, stroke, dementia and emphysema. But the National Institutes of Health is under budget pressure, and the other major source of money for medical research, the pharmaceutical industry, has little incentive to study palliative care. This trial was paid for by the American Society of Clinical Oncology and private philanthropy.

“Philanthropists tend to focus on curing cancer,” Dr. Temel said. “But we can’t ignore people who need end-of-life care.”

A simple bill, it instructs New York doctors and nurse practitioners to offer terminally ill patients information on hospice, palliative care and appropriate end-of-life options. Patients may accept or decline the offer, but at least they do not bear responsibility for starting what may be the most important conversation of their lives.

The bill, developed by Compassion & Choices in concert with our New York affiliate, passed the Assembly and Senate by large margins, but the governor’s signature remained in doubt because the Medical Society of New York pressed him for a veto. The Society’s inane claim that doctors who ask if their patients want to talk about palliative care, won’t also “fight” for their patients or “go the extra mile” to “aggressively recommend treatment options” defies both common sense and medical research.

Study after study disproves such muddled misconceptions and affirms the enormous value of conversations about end-of-life care. Just today the New England Journal of Medicine reports that lung cancer patients who receive palliative care actually live three months longer than similar patients not receiving such care.  The medical society’s arguments perfectly demonstrate how the mindset of doctors can trap their patients in a state of ignorance and subject them to escalating rounds of futile, burdensome and even life-shortening therapies.

David Leven, Executive Director of Compassion & Choices New York, urged these arguments on the governor, along with New York’s Hospice and Palliative Care Association and many influential physicians. Now, at last, patients nearing the end of life will receive an offer to discuss it. Some will decline the offer. Many thousands will accept and use the information to negotiate a death that honors their life and leaves memories of peace and comfort for the loved ones with them at the end. The PCIA will do what $100’s of millions in professional education did not accomplish. It will change the medical culture’s imperative to never speak of death and offer any treatment, no matter how remote the chance for success.

And not a moment too soon. New York and the nation recently got an insider’s look at end-of-life decision-making from a heart-wrenching article by Dr. Atul Gawande in the New Yorker. It displayed a catalogue of suffering from endless aggressive treatments visited upon willing and uninformed patients as doctor after doctor failed to muster the courage to discuss imminent death. Perceptive readers of the article might have noted the relative absence of informed patients, asking critical questions about side effects of treatment and chances for success. With no offer to discuss options other than more chemo, surgery or radiation, patients assume there are none.

PCIA will change those assumptions, but it will not force frightening facts on unwilling patients. The bill is clear that patients may decline the offer of information and that ends the discussion. Patients whose wish is not to know will still get that wish.

Many readers may recall the disturbing end-of-life story of Dr. Desiree Pardi, a well-known palliative care specialist at Weill Cornell medical center. As reported, Dr. Pardi requested and even demanded the most brutal cancer treatments right up to her death. Throughout her ordeal she willfully maintained a state of ignorance about progression of her cancer. She directed that all information go to her husband, referred to herself as the “queen of denial” and suffered a miserable death.

Nothing in the PCIA will influence those who prefer denial and ignorance to choose a different course. But it will empower the thousands more who welcome an opening for the conversation they secretly yearn for. Those are likely to absorb what they hear eagerly and make informed, well-considered judgments about the unfolding of the last chapter of their lives. Greater numbers will choose concurrent palliative care or hospice services delivered in their own homes. Many will find comfort knowing unbearable symptoms can be addressed with palliative sedation, and they can choose to discontinue treatments like dialysis or artificial ventilation at any time.

Compassion & Choices believes knowledge is power, and PCIA empowers patients to chart their course from a base of understanding.  How well it accomplishes this depends on regulations and implementation guidance from the New York State Palliative Care Education and Training Council.  We hope that body grants patients the full measure of empowerment PCIA promises and helps countless patients find their own path to a peaceful death when medicine offers no cure.

The Palliative Care Information Act requires physicians or surgeons to provide willing terminally ill patients with counseling about end-of-life care currently available to New York residents. That counseling will include information about hospice care, either at home or in a health care setting; the patient’s right to refuse or withdraw life-sustaining treatment; continuing to pursue disease-specific treatment; establishing a living will or advance directive; pain medication; and the outcomes benefits and burdens of each option, based on the interests of the patient.

“Too many patients and their families make the most important decision of their lives – how they will live their final days – without being fully informed of their legal alternatives,” said Barbara Coombs Lee, President of Compassion & Choices. “Knowledge empowers patients and gives them comfort. Only with full information can they choose among end-of-life options available to them. The New York Palliative Care Information Act requires physicians and health care providers to provide a full range of information about options. The Act puts into patients’ hands the information and power to choose.”

The Act also requires health care providers who do not wish to comply with the counseling requirement to refer or transfer the patient to another provider. In 2001, a study published in the New England Journal of Medicine revealed an alarming statistic: an estimated 40 million Americans see physicians who either feel no obligation or are undecided about whether they should present all possible treatment options to patients, based upon their personal objection. “Tens of thousands of dying New Yorkers will have a better quality of life and better deaths as a result of this bill, as most will decide, when fully informed of their options, to forego aggressive but often unnecessary interventions and choose palliative care options instead,” said David C. Leven, Executive Director of Compassion & Choices New York. “It will also result in substantial cost savings.”

“As an advocate for patients, Compassion & Choices was the catalyst and the principal force behind the measure,” said Kathryn Tucker, Director of Legal Affairs for Compassion & Choices. “The bill was modeled after similar legislation we championed in California. New York’s bill provides an even stronger requirement that patients get the counseling they need to be able to direct their care at this critical juncture.” State Senators of both parties provided support of two-thirds of that chamber and the Assembly approved it unanimously. The Act was supported by the Hospice and Palliative Care Association of New York State and the New York State Association of Health Care Providers.

The Act can help patients understand and weigh all of their options, including aggressive curative therapies, and make an informed decision that best meets their needs. It gives the physician an opportunity to discuss the benefits and side effects of all available treatments, and it can facilitate earlier access to hospice and palliative care. Recent studies prove the importance of such a conversation: research published in the October, 2008 issue of the Journal of the American Medical Association found terminal patients who have a discussion about end-of-life care with their physician or more likely to receive hospice care and establish a Do-Not-Resuscitate order. They are also less likely to enter an intensive care unit. The study further found the discussion prevents suffering at the end of life and does not make patients more anxious or fearful.

“Dying patients needlessly suffer due to a lack of essential information and too often spend their last days in agony,” said Coombs Lee.

Go back through nearly a year of posts, and I bet you won’t find many that talk about my experiences with patients. You might not even know I am a doctor. You’d never know that I am actually a pediatrician, and that I do still see patients now and then. I don’t talk about my clinical experience much with friends, or even family.

And even when I sit and think about being a doctor, I don’t think about the last seven years of being a faculty member here at IU. I don’t think of clinic when I was a fellow before that. When I think about being a doctor, I almost always go back to residency.

Look, I know many physicians who love caring for patients. I even know those who remember fondly their days as residents, being in the trenches and completely immersed in clinical care. I was not one of those people. I hated residency. It really didn’t agree with me. Ask my wife; for that matter, ask any of my friends. It was obvious to anyone who spent any time with me.

I didn’t hate residency because of the hours, although they were terrible. I didn’t hate the pay. I didn’t hate being overworked or underappreciated. I didn’t hate patients or the people I worked with. I hated the system. More specifically, I hated being a doctor in the system.

I just finished Atul Gawande’s latest masterpiece. I am rarely so jealous of anyone as I am of him and his skill right now. He brought it all back for me. I can tell you many horror stories of those three years in Seattle. But ask me to rank the top few, and this one inevitably comes to the top:

I was on a rotation in the Neonatal Intensive Care Unit (NICU), where babies who are born prematurely or really sick are cared for. A couple came in with a midwife after a way-too-long and rather botched attempt at a home delivery. As soon as they arrived, we knew things were not going to go well. The baby was born in extreme distress. It appeared to be septic, or massively infected. Initial vital signs looked really bad. And then things got worse.

One by one, the baby’s systems seemed to shut down. He couldn’t breathe on his own, so we put in a breathing tube. Then his heart started to fail, so we put lines into his umbilical cord to pump in medications. His lungs collapsed, so we put in tubes into his chest to help them reinflate.

While another doctor and I struggled to keep all this going, I listened as, right behind me, the doctors in charge sounded downright optimistic to the parents, who were, understandably, a mess. They could not imagine how things had gone wrong so fast. They wanted to hear good news. No one seemed to be able to tell them the truth. They were given messages of hope, and they told us to do everything. That’s what we do in medicine. That’s especially what we do in the NICU.

They left to go home and get clothes and supplies. Everyone dispersed.

So I was alone with this baby. It was small and blueish and had an ungodly number of devices and tubes coming out of it. I was 26, depressed, and I started to cry.

The baby never moved. His heart would slow down, and I’d up his meds. His heart rate would come back up until it didn’t, and then it would drop again. So I upped the meds some more. I don’t know how long this went on. I didn’t eat, I didn’t go to the bathroom, I didn’t talk to anyone. I just stood and watched.

Eventually, the ventilator stopped getting the job done, so we had to put the baby on an oscillator. Basically, instead of giving normal breaths, this machine shoves tiny amounts of air in and out really fast. It sometimes works when other things fail. It was loud, noisy, and made the baby shake. I don’t think he noticed.

Things slowly got worse. Nothing was working, and every vital sign was heading downwards. As instructed, I just kept adding stuff to keep him alive. But deep down inside, I started to think that what I was doing was wrong. Not incorrect — wrong. I wondered if I was hurting the baby. I just wanted him to be at peace. And, for a moment, I wanted the baby to die.

I don’t like to think about it. I try not to. Ever. But it happened.

Not long after, nothing I was doing was working. I called in the doctors in charge, and they agreed. They asked where the parents were. It suddenly dawned on me that they hadn’t yet returned. We called them, and they were shocked to hear how bad things were. After all, those same doctors had told them things were going to be OK.

They rushed back as fast as they could. They didn’t make it in time.

I thought I would post a piece of Gawande’s article and talk about how we completely screw up end-of-life care. I thought I would make a comment about how we spend too much money or waste resources. I thought I would talk about tradeoffs and better choices. But I can’t. Partly because I can’t do his work justice, and partly because this is an issue where deep down inside I think we are doing a ton of harm. Full stop.

I went home that night and bawled uncontrollably. This kind of thing happened all too often. I toyed with the idea of getting out. I even prepared some resumes to send off to companies outside of medicine.

But, some time later, I found myself back in the NICU. A similar situation was occurring. This time, though, the doctor in charge handled everything differently. She spoke to the patients honestly and in a completely different tone. She asked the parents what they wanted out of the short time they might have with their baby.

They cried at first, but then they stopped. They cleaned the baby up and dressed him in clothes his grandparents had bought. And they took him out.

They were gone for a few hours, and then they came back. They allowed us to give the baby drugs to comfort him. They held him, as a family, as he quietly passed.

I remember quite clearly his sister was in the room. She was about six. I asked her how they had spent the day. She told me how they had taken the baby to the park to see the water. They had brought him to family members so everyone could hold him. They showed him the sun and let him lay in the grass and let a dog lick his face. Her mother was listening in at the end, and somehow smiling.

Some months later, I ran into the mother in a different part of the hospital. She remembered me, and thanked me for all I had done. I remarked that I hadn’t done much; they had cared for the baby.

“No,” she replied. “Without all of you, he never would have known what chocolate ice cream tastes like.”

I spent four years in medical school learning how the body works, how it can break down, and how to repair it. I spent three more learning how to give the right drugs and do the right procedures to fight illness. And in all the time I’ve been a doctor, I honestly don’t know if I’ve ever done any more good than helping to stop the system so that baby, and that family, could share some ice cream.

I have a hard time explaining what I do to people. I’m not trying to discover a drug or cure a disease. I want to fix the system. That’s how I found peace. That’s how I practice medicine.

That’s why I’m a health services researcher.

The end of life is a difficult time for patients, their families, physicians and other health-care professionals involved with patient care. It is also an important time for discussions to take place between physicians, willing patients and family members to determine the best course of care for the patient during the last chapter of patients’ lives.

Having these discussions empowers patients or health-care agents or surrogates to make informed decisions about treatment in accordance with the patient’s goals of care and wishes. Unfortunately, despite the fact that most patients want to have these conversations with their physicians, recent studies reveal that these discussions often do not occur. This results in unwanted treatment and diminished quality of care.

A bill that has passed both houses of the state Legislature will, if signed into law, correct this problem. The Palliative Care Information Act is designed to ensure that patients diagnosed with a terminal illness, or decision-makers for those patients who have lost decisional capacity, will have the opportunity to receive information and counseling, if desired, regarding palliative care and end-of-life options appropriate to the patient. This includes prognosis and risks and benefits of the various options.

When dying patients receive information and counseling about their palliative and end-of-life care treatment alternatives, the quality of their end-of-life care is better than when discussions do not take place, their wishes are more often respected and they are referred to hospice sooner. Unfortunately, despite all of our efforts in recent years, hospice referral rates have not changed much and patients are referred much too often, if at all, only when close to death. This is in part due to the lack of discussions between physicians and patients until patients are very near death. The median length of stay in hospice, which provides excellent end-of-life care, is, sadly, only 17 to 19 days, with 33 percent enrolled for just eight days or less and another 33 percent enrolled for 31 days or less. The Palliative Care Information Act should ensure that timely hospice referrals are made.

With some 8,000 people dying each year in this region, the bill could have a positive impact on the quality of deaths of thousands of our residents yearly. Introduced by the chairs of the Assembly and Senate health committees, the bill was also co-sponsored by local Assembly members Amy Paulin, D-Scarsdale, and Sandra Galef, D-Ossining. The Palliative Care Information Act (S. 4498, A. 7617) should be approved by Gov. David Paterson. Support the bill by writing him at Executive Chamber, Albany, N.Y. 12224.

David Leven, a resident of Pelham, is the executive director of Compassion & Choices of New York, Pelham. Learn more at www.compassionandchoicesofny.org.

Death is a human constant. Fear of it is another.

It is not the being dead we’re afraid of - it’s the dying. We don’t want to suffer. We don’t want to linger. We don’t want to be in pain. We don’t want our loved ones to be in pain. Who would deny that the sweetest fortune is to die in one’s sleep? Or that to die at home, tucked in one’s own bed, is to die for? We should all be so lucky.

Death comes to everyone. The timing is much less certain. More straightforward is the fact that we are spending more time in hospitals in our final days, suffering through last-ditch efforts that buy us weeks at best, the cost of which too often leaves behind a wretched inheritance of financial hardship.

According to the Dartmouth Atlas Project, which tracks health care trends, more than four in five Americans who die have a long, progressive illness such as cancer, heart or respiratory failure, or Alzheimer’s disease. More than four in five of such patients say they want to avoid hospitalization as their earthly life comes to a close. But that’s not what’s happening.

So desperate are we to prolong our curtain calls that the average time spent in hospice and palliative care, which stress comfort and quality of life once an illness becomes incurable, is falling. The fatally and frightened ill, or their anguished surrogates, are more often choosing needless medicine over comfort care, compounding and prolonging physical torments beyond any sensible point.

As a result, people today are actually sicker than ever as they die. Too late, treatments are discovered to be worse than the illness. Doctors, pressured to press on, practice “exhaustion medicine” - treating until there are no options remaining. Life in its waning days is ignoble, and death with tubes emerging from every orifice is indecent.

At some point in life, the only thing worse than dying is being kept alive.

More precious time at home at life’s end could come sooner if families knew how to talk about alternatives to aggressive treatment. Many conversations can be had about what lengths to go before each of us - as is likely - one day becomes seriously or terminally ill. At least once, such conversations should involve our doctors.

Right-minded politicians recognize that as a nation we are poorly matching treatments to patients’ goals and wishes during serious illnesses and at the end of life. To correcting this imbalance, we need end-of-life counseling - well before our days are done - between ourselves and our physicians. And necessary to such counseling is reimbursement for the physician’s time and guidance.

This sensible and humane idea, withdrawn under duress from the health care reform bill passed earlier this year, is again being proposed in legislation (the Personalize Your Care Act) soon being introduced by Rep. Earl Blumenauer, D-Ore. Never mind the nonsense about government “death panels,” the politically brilliant and terribly misleading phrase issued by cynical politicians and talk-show demagogues trafficking in fear - in this case, our fear of death and dying, and of loss of independence.

Aren’t we all in favor of counseling and palliative care being available to the terminally ill? Shouldn’t cancer patients, as well as people with failing hearts and lungs and minds, get better end-of-life guidance? Why is this idea controversial?

This isn’t about euthanasia. If one wants to fight death to the bitter end, chancing that the end might indeed be bitter, no other should deny that match.

It isn’t even about skyrocketing health care costs - though without some national course correction, our extravagant attempts to cheat death will one day bankrupt us. Americans need remind themselves that there is no constitutional right to life everlasting.

It’s about living life and death with dignity, and learning how to let go. In the words of the enduring Truman Capote: “It strikes me as absurd and rather obscene, this whole cosmetic and medical industry based on lust for youth, age fear, death terror. Who the hell wants to live forever?”

When I become threadworn and brittle, when my days and spirit are dwindling, mercy calls that my end not be excruciatingly slowed by artificial means after any meaningful form of life remains to me. Such a denouement would make a parody of the fullness of my life.

All that I ask - don’t you? - is that my doctors, having been consulted beforehand and compensated for their time, guide me to an easeful death. To deny that to me and to my loved ones would be to add cruelty to my misfortune.

Todd Huffman is a pediatrician at McKenzie Pediatrics in Springfield.

You can read this article at registerguard.com.

Watching him I gained my first view of medical genius. He was a brilliant and influential teacher. What made him great, however, was his extraordinary moral direction in tethering his clinical brilliance to the service of humanity. Seeing his interaction with patients remains my most vivid lesson in how kindness and compassion expresses itself, and how it tempers the cruelty of clinical reality.

It was over forty years ago, and I was a lowly student nurse, laboring on the wards of the New York Hospital. Dr. Plum was head of the department of neurology, known far and wide for his encyclopedic knowledge, his razor sharp reasoning and his unparalleled diagnostic skill. Students of all the medical sciences, doctors in training and even other faculty members packed the auditorium for Neurology Grand Rounds each week, mesmerized by the display of his skills. To be assured of a seat, you’d get there early.

As Rounds began Dr. Plum would sit at an oak table at the front of the auditorium. The neurology resident would present the case and describe the presenting symptoms, the course of illness to date and results of diagnostic tests. Dr. Plum might ask the resident to expand on some part of the description, or ask how the patient responded to this or that test. Then he would rise and call the audience’s attention to elements of the presenting symptoms that he found most meaningful. Often these included some obscure, esoteric and seemingly minor sign or symptom, like how the patient’s handwriting had changed, or a sensation or smell the patient started to notice.  His affect was authoritative, academic and excited as he elaborated on the relevant findings and their significance.

Then he called for the patient to be escorted into the auditorium, and everything in his affect changed. The focus changed from “a case” to “this person.” Dr. Plum slowed his rate of speech, greeted the patient warmly and welcomed him by name. In a gentlemanly fashion, he introduced the people assembled to the patient, never the other way around. He thanked the patient for being willing to teach us about his illness.

Then he asked, very gently, for the patient to respond to questions or demonstrate the bodily dysfunction that provided clues to the nature and location of the tumor or other pathology. Sometimes he helped the patient, with physical support or verbal guidance, to display the limb that didn’t move, the word that didn’t come out or the thought that didn’t take shape. He was encouraging and appreciative of their effort. Patients were eager to help, apparently grateful to be truly seen and heard and for the opportunity help humankind by sharing the details of their frailty.

Dr. Plum would ask if there were questions from the audience, and we saw how others sought to imitate his respect and deference toward the patient. None, however, came across as compassionate and present as he.

After it was time for the patient to leave there would follow a scientific discussion of how the entire case fit together — how the patient’s symptoms foretold the test results and how the disease would unfold. Too often, it seemed to me, treatment was a long shot and the prognosis was an inevitable downhill course toward death.  I often wondered how Dr. Plum kept his spirits up, when over and over his diagnostic acumen brought no cure or remission.

Reading his obituaries, I think I understand. Dr. Plum was deeply attuned to the human condition, and he shouldered the honest burden of mortality. His wife told the Washington Post that “He felt very strongly that people should die with dignity and control the end of their lives as much as possible and that lives should not be extended beyond the point where a person could feel his own humanity.” In 1994 he cared for Richard Nixon after his stroke and heard the former president’s instructions that he did not want heroic lifesaving measures if the brain injury brought unconsciousness. Commenting later, Dr. Plum said “This was his last chance to exercise moral leadership, and he did it.”

Dr. Plum did not shrink or cower before death. He met his patients straight on, person to person, mortal to mortal. And they loved him for it. That’s moral leadership.