During the holiday season, we often think of giving in terms of tangible, often costly items.

There is, however, an extremely valuable gift that we can offer at any time of year, and which costs virtually nothing. It’s something all of us can offer to our family and loved ones. It’s the knowledge and understanding of what we would want done at the time of a health emergency, when we cannot make decisions for ourselves.

An advance directive, when properly completed, is a legal document that stipulates who should make decisions at a time when an individual no longer can. It also allows you to specify your wishes for medical treatment and just how aggressive medical personnel should be with your care.

At a minimum, an advance directive should name the primary person you trust most to make major health care decisions about your welfare. This person is called your “agent” for health care decisions. You may also name an alternate in case your first choice is unavailable for any reason.

An advance directive can be completed by any adult and is made legal by the signature of a notary public or the signatures of two qualified witnesses. Of course, as we grow older, a directive becomes more and more important, since the incidence of health care emergencies increases as we age.

Many critically ill patients and families who I have met in the hospital have never sat down and actually talked about their wishes before such a tragedy occurs. We all tend to avoid these discussions, but after a stroke, a heart attack or life-threatening event, your loved one may not be able to talk at all or understand these issues.

Would you want to have cardiopulmonary resuscitation (chest compressions, shocking, intubation) if you are found without blood pressure or pulse? What if you had advanced cancer and were not expected to survive more than months or perhaps a year? Would CPR still be your wish? What if you were on a ventilator (the breathing machine) and doctors could not wean you off after many days? Would you want to be fed by a tube through your abdominal wall into your stomach when you could no longer eat normally?

These detailed answers do not necessarily have to be recorded in the advance directive, but it is wise to have the conversation with your agent and family about these issues.

There is also a new form for people who have complicated, chronic illnesses. It spells out a person’s exact wishes with regard to CPR, intensity of treatment and artificial nutrition. This is called a POLST form, which stands for Physician Orders for Life-Sustaining Treatment. All medical personnel must honor this document and follow your wishes.

We’ll talk more about the POLST form next month. In the meantime, your health care provider can assist you to set up an advance directive and POLST, if appropriate, and answer further questions about completing these forms.

A man on his deathbed smells delicious chocolate-chip cookies baking. He makes it out of bed and crawls downstairs to the kitchen, where he sees the cookies cooling on the table.

He reaches up for one, only to have his wife smack his hand away.

“Don’t touch them!” she says. “They’re for your funeral!”

That’s one of many jokes Fritz Behr has told Dr. Justin Thomas at the St. Peter’s Hospital Cancer Treatment Center lately. Behr visits the oncologist on Tuesdays, and has promised to bring two jokes with him at each appointment.

“It’s like ‘Tuesdays with Fritzie,’” Behr said, alluding to “Tuesdays With Morrie: An Old Man, a Young Man, and Life’s Greatest Lesson,” a 1997 book about a young man’s visits with his dying former college professor.

Behr, 79, has a big repertoire of jokes and also has stage four cancer. A tumor was removed from the back of his tongue about a year ago and he refused follow-up radiation therapy.

About 36 days ago, he decided not to eat, which he could do only with great difficulty anyway.

Now he spends his days at home, with plenty of visitors. He said he feels no hunger or pain, although he smells food and sometimes dreams of it.

“I got no regrets,” he said. “I’m as happy as a clam.”

He didn’t expect to make it to Thanksgiving but enjoyed it at the home of his daughter, Lorraine Formaz, and her husband, Pete. Fritz sipped coffee.

“The doctors tell me you can live for months without eating, if you drink enough water,” he said. “It’s amazing.”

Behr came from Nazi Germany to New York City at age 8, and became a patrolman with the New York Police Department back when officers, if they weren’t in a car with a radio, communicated via call boxes on the street.

He ascended the ranks, eventually overseeing hundreds of officers throughout all five boroughs in various tasks.

His life changed on Sept. 11, 1976. Croatian nationals who had hijacked a plane also planted a bomb in Grand Central Station. Behr was among those injured during the attempt to diffuse it.

“I should have been dead then. The guy over here’s dead,” he said, gesturing as if at a colleague. “The guy over here, his fingers are gone. The guy over here, he doesn’t see so good anymore.”

Shortly thereafter, disability pension in hand, he moved out to Montana on the recommendation of a colleague who had moved to Livingston.

He had earned a law degree in the meantime from St. John’s University (“Right at the top of my class, thank you very much,” he said) and worked for Attorney General Mike Greeley (a Democrat) for more than 11 years, and then in the office of Gov. Stan Stephens (a Republican) where, he said, he sucked up job duties “like a vacuum cleaner,” before retiring again in 1993.

He took up skiing in his 60s. In recent years, he waged a one-man crusade against litter on local roads, particularly in the South Hills, driving a truck with a “Litter Patrol” seal that looked almost official.

Sometime in mid-2011, he began having difficulty swallowing.

He went to a throat specialist, who said he had a sinus infection. Another specialist said he had acid reflux.

Finally his primary care physician, Dr. Don Skillman, recommended he go to the famed Mayo Clinic in Rochester, Minn.

There, about a year ago, a doctor diagnosed him correctly: “You have an ulcer on the back of your tongue,” she told him.

A biopsy revealed it was cancer, and surgeons removed part of the base of his tongue.

And so began difficulties with food. He began using a feeding tube, gaining liquid nourishment from “a hanging bag” three times a day, he said.

After about a month at the clinic he was faced with the prospect of radiation therapy. He refused.

Back in Helena, he had continued complications with his throat. He ate through feeding tubes, either through the nose or directly to the stomach.

He’s had “wonderful care” at St. Peter’s Hospital, he said, including therapy to help with speech and swallowing.

He learned to swallow enough to handle pureed foods, and was able to free himself from the feeding tubes.

But every bite, every meal, remained a challenge.

“Angela is an excellent cook. She has worked very, very hard to accommodate me and nurse me,” he said. “But all that pureed food looked awful. Didn’t taste that good either.”

After consulting with doctors and Angela, he decided he didn’t want to go through the hassle of eating anymore. Angela said she supports his decision, although he tends to make his own decisions in any case.

“I’m not interested in prolonging my life,” he said. “I’ve had a long and interesting life.”

In addition to family in the Helena area, he has a son in Arizona. Another one died about 17 years ago at age 30, Behr said.

That son, he said, was an alcoholic and drug addict who squandered opportunities at Carroll College and died of AIDS, while Fritz held his hand.

“I told him, when he couldn’t breathe anymore, ‘Let it go, Fred, let it go,’” he said.

There are lots of tragedies in everyone’s life, he noted, and lots of wonderful things.

He’s especially thankful for the care from St. Peter’s, in particular the hospice care. A nurse comes a few times a week to check on him and see if he needs anything.

He’s made arrangements for his funeral. Mediterranean Grille will be catering it, and some friends say they’re going to play bluegrass music.

He’s on just a few medications, including a painkiller he takes sparingly.

Among the medals, badges and plaques honoring his police work is a frame with three documents: A Nazi-era passport, with a picture of 8-year-old Fritz and a red “J,” for being Jewish; a certificate of naturalization, with a photo of Fritz in early adolescence, marking his American citizenship; and another certificate from the German government, issued just last year, officially reinstating his German citizenship.

“I got to come to this country, I got to be of service in New York and Montana,” he said. “What could be better?”

Last year I graduated from nursing school and began working in a specialized intensive care unit in a large academic hospital. During an orientation class a nurse who has worked on the unit for six years gave a presentation on the various kinds of strokes. Noting the difference between supratentorial and infratentorial strokes—the former being more survivable and the latter having a more severe effect on the body’s basic functions such as breathing—she said that if she were going to have a stroke, she knew which type she would prefer: “I would want to have an infratentorial stroke. Because I don’t even want to make it to the hospital.”

She wasn’t kidding, and after a couple months of work, I understood why. I also understood the nurses who voice their advocacy of natural death—and their fear of ending up like some of our patients—in regular discussions of plans for DNRtattoos. For example: “I am going to tattoo DO NOT RESUSCITATE across my chest. No, across my face, because they won’t take my gown off. I am going to tattoo DO NOT INTUBATE above my lip.”

Another nurse says that instead of DNR, she’s going to be DNA, Do Not Admit. We know that such plainly stated wishes would never be honored. Medical personnel are bound by legal documents and orders, and the DNR tattoo is mostly a very dark joke. But the oldest nurse on my unit has instructed her children never to call 911 for her, and readily discusses her suicide pact with her husband. You will not find a group less in favor of automatically aggressive, invasive medical care than intensive care nurses, because we see the pointless suffering it often causes in patients and families. Intensive care is at best a temporary detour during which a patient’s instability is monitored, analyzed, and corrected, but it is at worst a high tech torture chamber, a taste of hell during a person’s last days on earth. 

I cared for a woman in her 90s whose family had considered making her a DNR,but decided against it. After a relatively minor stroke that left her awake but not lucid, Helen* went into kidney failure and started on continuous hemodialysis. Because she kept pulling out her IV lines and the feeding tube we had dropped into her nose and down to her stomach, we put boxing glove-like pillow mitts on her hands. When I approached with her medicine, Helen batted at me with her boxing gloves, saying, “NO. STOP.” She frowned, shook her head and then her fist at me. Her wishes were pretty clear, but technically she was “confused,” because when asked her name, the date, and her location, she failed to answer. During the next shift, Helen’s heart stopped beating. But despite talking with the doctors about her advanced age and the poor state of her health, her family had nonetheless decided that we should “do everything we can” for her, and so Helen died in a frenzy of nurses pumping her with vasopressors and doing chest compressions, probably cracking several ribs.

That was a situation in which a patient’s family made a decision that probably caused Helen to suffer and did not help her. But there are circumstances where it is the healthcare team that chooses to push on with intensive interventions. And there are circumstances where bureaucracy, miscommunication, and the relatively low priority, among very busy physicians, of making decisions about how far to pursue medical care cause patients to linger in the ICU weeks past the point when any medical professional thought meaningful recovery was possible.

Consider another example, of a patient with advanced cancer, in this case an elderly woman with a well-informed husband who knew his wife was dying and that she didn’t want to end her life with an extended ICU stay. After her last tumor resection this woman developed an infection, and during a meeting with her husband the attending physician explained that the main problem we were immediately dealing with was the infection, which was bad and could well be something she would not recover from. The patient’s husband explained that he knew that his wife didn’t want to be there and that her underlying diagnosis plainly meant that her life was going to end, that they both understood this and didn’t want to painfully draw things out. Then he asked if he had any decisions to make—in effect being as blunt as he could without simply insisting that they withdraw care then and there.

The doctor said no. She said that the patient needed to complete the course of antibiotics to see if the infection could be cured, after which they could approach the question of whether to continue with intensive medical care. I imagine the doctor saw some distinction between letting the patient die of her primary, terminal diagnosis and letting her die of a complication. So the husband’s efforts to stick up for his wife went unheard, and she stayed in the ICU, comatose, for about two more weeks—quite the opposite of her stated wish—before everyone agreed to let her go.

On the other side of the spectrum are the poor forgotten patients, the ones who linger because nobody will speak up for them and the medical team is not legally allowed to decide to do anything short of maintaining life, day after day. One man with a severe stroke languished over a month while his family members dodged the responsibility of visiting, witnessing his condition, and making a decision about his care. Every morning the health care team rounded on him and we discussed the various states of decay of his body—he had severe diarrhea, frank blood in his urine, and ventilator associated pneumonia—and then moved on to discuss the efforts being made to contact his family and impress upon them the need for action. The ICU had nothing to offer him, and someone needed to choose: he would either have a tracheostomy and permanent surgically placed feeding tube in order to be moved to a ventilator dependent nursing home, or have his care withdrawn.

Similarly, we had a homeless woman with a severe brain injury. CT scans of her brain showed an undifferentiated mass of swollen tissue—this is very bad. We were draining cerebrospinal fluid out of her head because the swelling had obstructed the flow of this fluid, causing hydrocephalus and increased pressure within her brain. Her pupils did not react to light, and she had no corneal reflexes—that is, when you touched her eyeball, she didn’t flinch. What kept her from being brain dead was the fact that her ventilator was set to “pressure support,” meaning that she initiated breaths, and she still had a cough reflex.

The first day I took care of her, when she’d already been there over a week, I was told that there was a plan to seek a court-appointed guardian to make her health-care decisions. Any friend or relative could have become her decision maker, but this woman was alone. A few days later—why did it take that long?—the social worker presented the patient in court and a lawyer became her official guardian. This lawyer was unwilling to withdraw care. Further, he was unwilling to make the patient a NO CODE. If her vital signs became unstable and she started to die, we would have to use vasopressors, chest compressions, and defibrillation to keep her heart beating and keep her alive.

After this, she remained in the ICU for over a week, and the medical team began itching for ways to get her off of the unit, because she began to be seen as a living corpse taking up a critical care bed and its associated resources—things that could save a different very ill person. Eventually, their only objective was to wean her off of the ventilator and move her out of the ICU, so that her continued care would be someone else’s issue to deal with.

These four patients had different injuries and different circumstances. What was common to them was that they all suffered the bodily harm and indignity of being physically invaded in every sense, robbed of their integrity entirely, and pinched and poked continuously during the last days and weeks of their lives. Since nobody at the time thought they were going to get better, the people doing this to them—myself and other nurses—had an overarching question: Why?

All of us love the opportunity to help save a life. That happens in intensive care, and it is exciting and miraculous. But in the instances I’ve described, and many, many others, nobody involved is under the delusion that a life is being saved. This is where we become cynical, and where many nurses choose not to reflect on the painful purgatories trapping our patients. Rather, they express their opinions succinctly in wry conversations about DNR tattoos, and they master—or bluff—an exquisite segregation of the mental and physical work of caring for these patients from their own emotional energy. They do this in order to be able to continue working. They get over the absurdity of certain circumstances, and they manage not to care.

I’ve not accomplished this. The absurdity weighs me down, and so I want to describe it to you. Medical science can do incredible things. But you would not believe the type of life these life-sustaining treatments often allow.

People who are at the end of their life and are being kept alive artificially have a way of shutting down. Fighting this process is not a peaceful act. Most of the patients I’ve described were on ventilators, with plastic tubes pushed into their mouths and down their tracheas in order to provide respiratory support. The tubes are taped to their faces, and patients who can move at all are usually both tied down by their arms and sedated when on a ventilator, because it is so physically uncomfortable that patients will use their last ounce of strength to pull the tube out of their mouth. These patients were already comatose due to their injuries, but other critically ill patients who were previously awake and responsive become unable to speak while on a ventilator. Once intubated, patients are unable to clear their respiratory secretions—phlegm—and so we stick smaller rubber tubes connected to suction into the breathing tube, down their trachea and towards the entrance to the lungs themselves, in order to vacuum the secretions out of their lungs. You can imagine that this too is uncomfortable.

Patients obviously can’t eat, so they will have had a feeding tube pushed up their nose or through their mouth and their esophagus, down into their stomach. This often takes a few tries, requiring us to pull up the bloody tube, re-lube it, and push it back in at a different angle. If a patient is ill long enough, these instruments will be replaced with a tracheostomy in the neck rather than a tube down the mouth and a feeding tube going directly into the stomach rather than down through the nose. These are for patients who aren’t expected to be able to eat or breathe independently in the long term.

These patients often develop diarrhea, sometimes simply because of the liquid food they receive—cans of smelly, nutritionally balanced tan colored slush—and sometimes because they’ve acquired a very hardy and aggressive bacteria, C. difficile, that is widespread in hospitals and causes profuse, foul stool. If they have diarrhea several times a day and their skin is exposed to it, the skin begins to break down, and so we place a rectal tube in their bottom, held in place beyond the rectum with a small water filled balloon. The diarrhea drains into a clear bag that hangs on the side of the bed. Sometimes when a patient is very sick, as in the case of the man whose family avoided him for over a month after his stroke landed him on my unit, they lose their rectal tone and the tube falls out. This is how I found myself up to my elbows in diarrhea with another nurse, struggling to clean the crevasses of his body and tape an ostomy bag around his bottom, the last hope to contain the flow of stool so that the patient wouldn’t sit in a continuous puddle of it while permission for his death was pending.

Breathing tubes, feeding tubes, and rectal tubes are only part of it. The patients of course have urinary catheters and IVs, often larger IVs that are placed centrally—threaded straight toward the heart to allow us to push drugs in concentrations that would damage smaller veins. Healthier hospitalized patients complain sometimes about their IVs and frequently about their urinary catheters—a rubber tube up your urethra isn’t pleasant. If the patients I’m describing could talk, though, I think the urinary catheter would be the least of their complaints.

In addition to the invasion of tubes, ICU patients live in a world of bright lights and loud alarms, continuous stimulation. People pry open their eyes and shine flashlights into them, then pry open their mouths.

We treat most patients with small shots of heparin in their subcutaneous flesh, in order to prevent blood clots. This makes them bruise easily, and patients who’ve been with us for a while are often peppered with tiny bruises from the shots. Then there are the bigger bruises caused by painful stimulus given by doctors and nurses who are monitoring the arousability of the patient, the depth of their coma. If he doesn’t wake up when you shout, or when you shake him, what about when you pinch and twist his trapezius muscle, or grind your knuckles against his sternum for a while?

It’s been said that dying is easy, and it’s living that’s painful. Not so in the world of intensive care. Patients who have a hope of recovering from their injury, genuinely surviving it, may be fighting to live. For them the torturous days as an ICU patient are required in order to surmount their injury. And there are always cases where nobody knows what the outcome may be, where the right thing to do is maintain physical function and give the body time to heal. Many patients will survive with deficits, will not return to their former selves but will be able to leave the hospital, go to rehab, begin the hard work of adjusting to another kind of life. But time and again we care for patients who are fighting to die, and having a very hard time of it, because in the ICU there are only two ways to die: with permission, too often not granted or granted too late, or in the last-ditch fury of a full code blue.

We are not helping these people by providing intensive care. Instead, we are turning their bodies into grotesque containers, and reducing their lives to a set of numbers monitoring input and output, lab values, and vital signs, which we tweak to keep within normal ranges by adjusting our treatments, during the weeks and days immediately preceding their death. This is the opposite of what should be prioritized when a person is known to be nearing the end of their life without the hope of getting well.

I want this to change. People who choose to do the work of caring for the gravely ill must concentrate on monitoring and responding to changes in their vital signs, administering their medications, examining all of their physical systems, coordinating their various tests and procedures, bathing them and cleaning up their bodily messes, dressing their wounds, keeping them comfortable, and communicating with their families. I don’t think that we should also have to deal with feeling that our work is morally questionable and at times, reprehensible.

Americans have a lot of work to do in developing a more sensible, fairer, and less wasteful healthcare system. That work needs to include taking a hard look at the conditions of patients whose lives may end in intensive care, both at the level of the entire health care system and at the level of the individual—our wishes for ourselves and our family members whose health is failing or has already failed. Our goal is to help these people, and assuming that prolonging their lives for the longest time possible is the only way to do this is a foolish and harmful mistake.

A small plastic tube is all that stands between survival and starvation.

The benefits of a feeding tube — helping elders who have forgotten how to eat — seem so obvious that it is used on one-third of demented nursing home residents, contributing to a growing device market worth $1.64 billion annually.

Except it does little to help. And it can hurt.

Decades after the tube achieved widespread use for people with irreversible dementia, some families are beginning to say no to them, as emerging research shows that artificial feeding prolongs, complicates and isolates dying.

The tale of the feeding tube, known as percutaneous endoscopic gastrostomy (PEG), is the latest installment of “Cost of Dying,” a series exploring how our technological ability to stave off death creates dilemmas unimaginable decades ago, when we died younger and more quickly.

Food is how we comfort those we love; when all other forms of communication have vanished, feeding remains a final act of devotion. So the easy availability of feeding tubes forces a wrenching choice upon families: Do we say yes, condemning a loved one to dependency on a small plastic tube in their stomach? Or do we say no, consenting to their death?

Tubes are useful as a nutritional tool for patients struggling with a critical illness, such as Lou Gehrig’s disease, or recovering from stroke, cancer or anorexia.

But if no turnaround is in sight — particularly in elders with progressive neurological illness — they can be a dreadful mistake, medical researchers now say.

For families praying for a reversal, or just the gift of a few more days, the decision to insert a tube into the stomach can initially feel like the right choice. The device helped sustain Fran Cole’s beloved mother when Parkinson’s disease took away her ability to swallow.

“I think my mother was enjoying life at the time that her tube was put in,” said Cole, of San Jose. “She smiled and enjoyed our presence. She was not in pain. She just had extreme difficulty with word retrieval, and a very poor short-term memory.”

But four years later, the blessing became a curse. Her mother had declined severely, even though her feeding tube kept her going.

“She was trapped, unable to make the choice to die,” Cole recalled.

The device joins a burgeoning array of sophisticated technologies that, once invented, are hard to resist. Heart valve replacements for frail octogenarians? Dialysis to help aged kidneys? Anti-cancer drugs costing tens of thousands of dollars that extend life for mere months with deeply sickening side effects?

The cost of such end-of-life interventions, coupled with a tidal wave of elderly baby boomers, could result in an unsustainable economic burden that might bankrupt Medicare and weaken the American economy, some experts say. Medicare costs are already expected to reach $830 billion a year by 2017. About one-quarter — or $208 billion — will be spent on people in the final year of their lives.

There’s a personal price, as well, for both the patients and their families.

“It is amazing how long you can keep someone alive,” said Dr. Leslie Foote, medical director of the Salinas-based nursing home Windsor Gardens Rehabilitation Center. “But we sure aren’t doing them any great favors.”

In a remarkable 1979 experiment, Drs. Jeffrey Ponsky and Michael Gauderer conceived of creating a small tunnel above a baby’s belly button, leading directly to the stomach. Complicated and risky surgery wasn’t necessary. And tube placement, guided by a viewing tube called an endoscope, was very accurate.

“It is simple, safe and rapid,” reported Ponsky, now chief surgeon and chairman of the Department of Surgery at Case Western Reserve University School of Medicine in Cleveland.

Almost immediately, the medical community embraced the tool, then applied it to other kinds of patients: victims of stroke, trauma, cancer, Parkinson’s disease, neurodegenerative diseases and advanced dementia.

“With this technique, it became easier — you avoided the (operating room), you could do it in the endoscopic suite, and it was much faster. You didn’t have to do deep anesthesia or face surgical complications,” said Dr. Timothy O. Lipman, chief of the GI-Hepatology-Nutrition Section of the Veterans Affairs Medical Center in Washington, D.C.

The surgery was also lucrative: Medicare pays doctors $225 to $1,047 to place the tube and pays hospitals $591 to $3,361.

For nursing homes, it eased the workload of hand feeding.

As the market expanded, so did innovations in device design, materials, pumps and placement techniques. Each improvement boosted PEG popularity.

Initially, no companies were interested in manufacturing the tube, predicting little demand. Ponsky finally persuaded a company, American Endoscopy, to produce it. Now a dozen large corporations, such as Abbott and Nestle, dominate the market.

Some manufacturers lease the feeding apparatus at low cost to hospitals and nursing homes in exchange for a commitment to use only the manufacturers’ food and supplies.

Major marketing budgets boost business. “PEG Kits are even more convenient to use than before,” boasts manufacturer Kimberly-Clark.

For people who can still make their own decisions, feeding tubes buy precious time.

Writer and cancer patient Christopher Hitchens kept writing at his legendary pace, typing past midnight on a laptop on his bedside table to finish articles for Vanity Fair and other major publications. Prize-winning film critic Roger Ebert, a cancer patient who attends major film festivals around the world, has blogged about his tube.

“My body may be ready for the Texas Chainsaw Museum,” Ebert wrote, “but I’m here, and it’s a beautiful day.”

The surge in use is mostly in the over-65 group. Within seven years of the tube’s introduction, annual insertion rates in Medicare patients doubled, from 61,000 to 123,000 by 1995.

A 2011 forecast saw the aging population generating 5.9 percent annual revenue growth in the feeding tube industry through 2018. The global feeding device market was estimated at $1.6 billion in 2011 — and will reach $2.4 billion in 2018, according to a report by analysts at Transparency Market Research.

“I never even thought about dementia,” 40 years ago, inventor Ponsky said recently.

“It was just a simple way to make a procedure — that was already done — much easier to do.”

The logic behind the use of feeding tubes seems inescapable. Our loved ones fed us; we feed them. We imagine our own hunger pangs or conjure up images of famine. We honor our elders; at their bedside, we may be reminded of the Biblical plea in Psalms: “Do not cast me off in old age. When my strength fails, do not forsake me.”

Tube feeding constitutes ordinary care at Catholic hospitals. “People with end stage dementia still possess human dignity. And that dignity must be respected,” said Gerald Coleman, vice president of corporate ethics at Catholic Daughters of Charity Health System, which manages San Jose’s O’Conner Hospital and Gilroy’s St. Louise Hospital and others.

The Orthodox Jewish viewpoint also asserts that food and fluids must be offered to all patients, regardless of the statistical chance of recovering, according to Rabbi Dr. Yizhak Kupfer of Brooklyn’s National Institute of Judaism and Medicine.

Indeed, few of us are ready to say goodbye. And we’re not sure our elders are, either.

Doctors recommended a tube for Cole’s mother, and the family agreed. “Our choice was to put in the tube and allow her to continue living — or … give no food or hydration while she died,” Cole recalled. When they asked her mother if she wanted the tube, “while not giving a resounding yes, she did not say, ‘No.’ ”

But the disease progressed, and her mother became unresponsive. Pillows and a seat belt held her up in her wheelchair, but her head drooped.

The family withdrew the tube after a “no artificial nutrition” clause was found in the will that her mother had signed years earlier. Although Cole strongly believes they did the right thing, regrets remain.

Siblings were deeply divided; a brother insisted that withdrawing food was, in effect, murder.

“I am still haunted by having had a hand in her death,” Cole said. “I sat by her bedside for 13 days while she starved to death wondering ‘What are you thinking, Mother? Are you happy that you will finally be freed from this horrible entrapment in a miserable and meaningless life?’ Or are you wondering, ‘Why is my daughter doing this to me?’ ”

Paul Barrett of Moraga, a retired pilot, sees no benefit to artificially prolonging his ailing wife’s life, a view she shared in her advance health care directive.

Diana, a 65-year-old former flight attendant who loved to make lasagna and caprese salad, suffers from Alzheimer’s disease. Paul often helps cut her food, steady her soup spoon, and guide a drink to her lips. The day will come, he knows, when it is time to move to pureed foods and hand-feeding.

But no tube.

“This is a fatal disease — and to try to keep her alive, knowing I can’t save her anyway, doesn’t seem to make sense to me,” he said. “It is emotionally tough, of course. But the logical part of me knows it is absurd to try to keep her alive artificially.

“If the day comes when she can no longer swallow, just keep her comfortable in hospice,” he said. “Let her go.”

Attitudes are changing, said Bill Fisher, head of the Northern California chapter of the Alzheimer’s Association.

When Fisher’s grandmother had Alzheimer’s four decades ago, it was determined she would be fed artificially. “It was an automatic thing, nobody asked, nobody talked about it,” he said.

But when his mother-in-law sickened with the same disease, the family made it very clear that “we absolutely did not want a feeding tube,” Fisher said.

“It is still a difficult issue — no question about it — but some families are wrestling with it ahead of time,” he said.

For two decades, no one checked to see what feeding tubes were actually accomplishing.

Short-term results looked rosy. But little attention was paid to long-term consequences for the frail and demented elderly.

“Medical research is dominated by research on the new: new tests, new treatments, new disorders and new fads. But above all, it’s about new markets,” according to Dr. H. Gilbert Welch, professor of medicine at the Dartmouth Institute for Health Policy and Clinical Practice.

The number of nursing home residents with advanced dementia who get feeding tubes each year varies widely across states, according to the only national study of the practice. It found that the 2001 average rate nationwide was 54 per 1,000 — but as low as 2.1 in Utah and as high as 114 in Louisiana. Racial minorities were much more likely to get tubes than whites. More than two-thirds of all insertions were done when a patient was hospitalized for pneumonia or some other illness.

When isolated problems with feeding tubes began to worry experts, they took a closer look and made a disturbing discovery.

In a seminal 1999 study, Dr. Thomas Finucane of Johns Hopkins Medical Center found no evidence that feeding tubes prolonged survival of aged, demented nursing home patients. Nor do they prevent pneumonia, improve function or comfort dementia patients.

Subsequent studies were also startling. Using tubes often requires restraints — such as sedatives, or tying patients’ wrists to their beds. And there are complications: Each insertion is associated with 3.5 emergency room visits per year, costing Medicare an average of $1,000 per visit.

“Intuitively, it seems to make sense: If you don’t eat, you will die,” said Lipman, the Washington, D.C. Veterans Affairs Medical Center physician. “But if we look at the total picture — complications, without improving the quality of life — what have we accomplished?”

A growing body of research suggests wide overuse of tubes in other patients, such as those with some types of stroke, muscular dystrophy, and some cancers.

Tube use also robs patients of human contact — although hand-held “comfort feeding” is slow and messy, it is also intensely intimate. And it may provide all the calories a frail and dwindling elder needs.

Almost all dying patients, even those who are hand-fed, lose their interest in eating and drinking; this is the body’s signal that death is coming, according to palliative care providers. If food is not artificially provided, patients typically die within two weeks, although exceptions are common. Lack of food triggers a biochemical process called ketosis, which actually blunts hunger and eases discomfort due to the release of natural morphine-like agents.

“We are putting in feeding tubes much too quickly,” concluded Dr. Joan M. Teno of the Center for Gerontology and Health Care Research at Brown University Medical School.

“We’re thinking: It’s nourishment,” said Teno, author of some of the field’s most influential studies. “We don’t think of the myriad reasons they cause problems.”

Yet thousands of patients still spend their final days — and even months or years — attached to tubes.

Why?

Families may not understand the implications of tube feeding, due to poor communication with doctors. Many patients don’t prepare advance directives, which can specify “no artificial hydration and nutrition,” so their distressed families urge doctors to “do everything.”

“We have a tough time letting go — rightly so,” Teno said. “Think about what we’re asking people to do.”

Doctors may not want to let go, either. They’re trained to heal. They’re paid more to rescue than to talk about death. And those conversations are awful.

“It’s easier to recommend a nonbeneficial procedure than to confront difficult end-of-life issues,” geriatrician Dr. William Plonk Jr. of the University of Virginia Health System wrote in a 2005 journal article.

Financial incentives encourage hospitals to overuse the procedure, experts say. Because it is costly to keep patients, hospitals seek to quickly stabilize and return patients to a nursing home. That means ensuring they are getting nutrition — and the most efficient way often is through a feeding tube.

Nursing homes have their own reasons to favor tubes. Many lack the staffing for time-consuming hand feeding. And another incentive promotes tube use: Its costs are considered “skilled nursing” care that Medicare generously reimburses. Moreover, nursing homes risk stiff penalties if regulators believe their residents are malnourished.

All these powerful reasons — emotional, ethical, practical, financial and regulatory — make it easy to lose sight of what’s best for the patient, experts say.

“Not eating at the end of life is a normal part of the dying process,” said Foote, the medical director at Windsor Gardens in Salinas. “We have forgotten that.”

Our hearts go out to Karen Okada, who lies dying while her family and the
lawyers argue over her body.

This 95-year-old woman expressed in her 1998 written “living will”
(advance directive) not to have her dying “artificially prolonged.”
We have all heard how important it is to create an advance directive if we
hope to make the journey to death in a manner consistent with our values.
Mrs. Okada’s experience makes clear this is not as easy as filling out a form
and filing it away.

Last month, Mrs. Okada suffered the latest in a series of medical crises that
began in December. Her doctors at The Queen’s Medical Center determined
she was beyond recovery and recommended removing her feeding tube.
A complicating factor is present, though. At the same time she documented
her wishes, Mrs. Okada also completed another equally important advanceplanning
document: She appointed her brother as her health care proxy to
make medical decisions if unable to do so herself. He insists the feeding tube
stay in place.

We cannot know what is in her mind now. Is this the kind of condition she
wanted to continue in? How can you be sure your wishes will be followed?
Compassion & Choices (www.CompassionAndChoices.org) educates,
supports and advocates on a broad range of end-of-life issues. Our
counselors help thousands of people each year find peaceful deaths that
honor the values of a lifetime. They advise that you must not only document
your wishes, but also discuss them with your health care proxy and satisfy
yourself that he or she is the right person to honor them when the time
comes. Make sure your proxy understands your desires, and is able and
willing to see your wishes carried out. Sometimes it can be hard to convince
a loved one that, under certain conditions, allowing you to die will be the
best way to care for you and express love.

Before asking someone to be your proxy, ask yourself, “Are they assertive?
Are their values aligned with mine? Will they respect my choice even if
grief or pressure from others makes it hard to do so?”

Review and discuss these documents regularly. Your family should know
what your wishes are and why. Your doctor also should know where you
stand, and you should feel comfortable that he or she will advocate
respecting your wishes. It appears that The Queen’s Medical Center
physicians acted to respect Mrs. Okada’s directive. Unfortunately, her proxy
demands treatment in conflict with her expressed wishes, forcing the dispute
into court.

Compassion & Choices supports an individual’s decision on how to
approach dying. We believe patients within six months of death are entitled
to make their own end-of-life choices. For mentally capable patients, this
includes the choice to request medication to assure the possibility of a
peaceful death.

We offer guidance to individuals facing a terminal illness or just planning
ahead, and we work for public policies that support individual choice and a
full range of options at the end of life.