Wendell Kennedy and Betty Pryor at their mother's side in intensive care.

Patricia Moore read a poem to her husband in the intensive-care unit. She stood beside him wearing a surgical gown, holding the dog-eared book in her latex gloves.

Through her surgical mask came the tender, muffled words of "Knee-deep in June," by James Whitcomb Riley:

Orchard's where I'd ruther be -

Needn't fence it in fer me!

Gene Moore lay before her, unconscious. An IV line entered a vein in his neck and ran through his heart, into the pulmonary artery. It measured blood flow and carried five medicines into his infected body.

A ventilator tube ran like a garden hose down his throat. A feeding tube pushed through his nose and into his stomach.

Bags on his legs inflated and deflated every few minutes to prevent clotting. A catheter drained urine from his bladder. He wore orthotic boots to keep his feet bent so that, should he ever, miraculously, get out of bed, this retired 63-year-old steelworker would be able to stand.

Mrs. Moore stood beside her husband of 44 years, her heart aching with indecision.

Were she and her two sons doing the right thing putting him through this torture? Or should they stop?

Should they tell the doctors to let him die?

MEDICINE HAS GOTTEN so good at keeping people alive that Americans increasingly must decide how and when they will die.

They must choose if death will come in a hospital room with beeping machines and blinking monitors or if it will come at home, with hospice workers blunting the fear and pain that so often accompany the final hours.

And soon, they may have a remarkable choice: Will they kill themselves with their doctor's help?

Americans are demanding options because they are beginning to care as much about the quality of their death as the length of their life.

They want control at the end. They want a humane death, a good death.

Throughout the country, in hospitals and medical schools and courtrooms and statehouses, reformers are pushing hard to improve the way Americans die.

Already, they have won the right for families to turn off ventilators, hold back life-sustaining drugs, and even take out feeding tubes.

Nearly 400,000 Americans every year now seek a tranquil death through hospice. Since 1982, when Medicare began covering hospice care, the cost has grown to $2 billion this year.

Six years ago, the world had not heard of Jack Kevorkian. This year two federal appeals courts ruled that patients have a right to assisted suicide. The issue now stands before the U.S. Supreme Court.

With this quest for control have come difficult ethical, social and personal decisions that Americans are only beginning to wrestle with.

Rose Kennedy's son Wendell and daughter Betty Pryor wait for word about her condition with her great-grandson, Antwain Wynn. "It's just so hard to make a decision," said Pryor, who was designated by Mrs. Kennedy's living will to act in her behalf.

Today and over the next four days, The Inquirer will present portraits of people and their families approaching the end of life in different ways.

The intensive-care unit offers a hope for recovery, but the price can be a miserable death. Deciding when to surrender can be a torture all its own.

Thousands of Americans find themselves in the same position as Mrs. Moore, standing beside a loved one, in intensive care, wondering what's happening, wondering what's the right thing to do.

FOR 24 YEARS, Gene Moore had lived in an 18th-century farmhouse in rural Ottsville, Upper Bucks County.

From his back porch, he watched the sun set over endless hills. He grew grapes and made wine, shoed horses, and played classical guitar and poker with his grandsons. Every summer he'd go crabbing with the family in Ocean City, Md., and pour on the bay seasoning.

He dreamed of buying an RV and roaming the country with his wife and younger son, Ron, 35, who still lived at home. But then his lungs went bad - pulmonary fibrosis. By January, Gene Moore couldn't breathe. Then came the lung transplant in February at the University of Pennsylvania Medical Center. A step from death, he was reborn.

He regained enough stamina to walk two miles a day on his treadmill and went to a flea market where he showed strangers the scar - shaped like bat wings - that streaked across his chest. "One hundred and twenty staples," he would tell them proudly.

He bought a 1981 Thunderbird, a lifelong dream, and drove it twice before he found himself back in the hospital in late June. His body had rejected the lungs.

On July 7, Gene Moore was wheeled into Penn's medical intensive-care unit - the MICU. He was being kept alive by mechanical ventilator, feeding tube, blood transfusions, blood pressure medicines, steroids, antibiotics. He was heavily sedated.

Like many Americans, the Moores believed doctors could save almost anyone, cure almost anything. They had experienced one miracle, the transplant, and expected another.

Death was inconceivable.

But so was the agony of the MICU - until they lived it.

THE MOMENT Mrs. Moore walked through the big double doors into the ninth-floor MICU, she entered a world like no other, a world in which she was a complete stranger. Death was so near, the language of doctors so foreign.

The MICU consisted of 12 large rooms, wrapped around a busy nurses' station. Inside each room lay an extremely sick patient surrounded by a confusing array of pumps and monitors incessantly beeping. A solemn-faced visitor often sat at the bedside.

Doctors, nurses went in and out. They were busy, on the move.

Gene Moore landed in 979, a corner room with a large window facing the nurses' station. Because of the risk of infection, everyone had to put on a gown, gloves and mask to enter his room and take them off on leaving.

Mrs. Moore usually sat in a chair next to her husband's bed, waiting for a good word from a doctor. Something, anything, to sustain her, to give her hope. Perhaps his creatinine level was up, or some other obscure measurement she didn't understand.

Mr. Moore didn't have a living will - a legal document stating his preferences for end-of-life treatment - because he thought, incorrectly, that a will would take the decision-making out of his wife's hands and give it to the doctors.

Mrs. Moore and Ron believed they would be in control.

Wendell Kennedy and family knew Rose Kennedy's chances were grim. Mrs. Kennedy, 75, had had a stroke while getting ready for church. The next day her living will turned up in a dining room drawer.

"We are his living will," she said. But Mrs. Moore didn't understand what was happening, even though the doctors and nurses were very pleasant and answered all her questions.

"I just don't know what to ask," she said.

How could she decide what was best?

"You just don't know how far, how much to let him go through," Mrs. Moore said. "He has been to hell and back. He's had so many blood tests. His arms are so scarred they can't even get a needle in."

So she sat, hour after hour, day after day, beside her husband. He lay there, unresponsive, somewhere between life and death, while she passed the time doing the most ordinary things: reading him poems, planning vacations, mulling recipes for baked lobster Savannah.

She wanted to believe he would return home again, soon. After all, almost 80 percent of the 700 or so patients treated in Penn's MICU each year leave alive, so why not her husband?

MANY REFORMERS BELIEVE that doctors and hospitals still focus too much on curing and not enough on caring for people at the end.

The largest clinical study ever of the sick and dying (10,000 patients, five hospitals, eight years) reported last year that more than a third of terminally ill hospital patients died in pain.

Many spent their last hours isolated from their families, their wishes about withdrawing life support ignored by doctors.

Patient-doctor communication in the last days of life was poor, according to the $28 million study, funded by the Robert Wood Johnson Foundation in Princeton.

"We withdraw care when it's too late, when death is certain, when even the janitor knows," said Joan Teno, of the Center to Improve Care of the Dying at George Washington University, a lead researcher in the study, which ended in 1994.

Advocates for change believe doctors are too optimistic, too sparing in what they tell patients. They say that families would be more willing to accept death earlier if doctors were more honest, more realistic.

Doctors at Penn's MICU say they are aggressive at withdrawing care - making the decision that further efforts would be futile and recommending to the family that the patient be allowed to die as comfortably as possible.

They say the families don't want them to quit.

"Almost invariably families want us to push on when we want to stop," said Dave Gaieski, a resident doctor on the MICU.

"It's only one in 20 that a family comes to us and says stop," said Cheryl Maguire, an MICU nurse for 10 years. "It's much more the case that we see there's no hope, and we keep working until they get to that point, too."

Ronald Collman, one of two attending doctors on the MICU last July and the man ultimately responsible for Gene Moore's care, knew that the odds were against him. But some patients like Moore survived. Collman thought Mr. Moore had a chance, and he knew the family wanted to fight.

Collman said he believed MICU doctors give patients the ending they want.

"I think most of our patients die with dignity," Collman said. "We've confused death with dignity with a romantic death. Death usually is not beautiful. It's ugly. Death with dignity is death that's right for them. I don't mean futile things, but fighting and really giving them a chance.

"Patients are here because their family chose an aggressive fight. To die after an aggressive fight is an honorable thing, appropriate for that person."

MRS. MOORE MADE A FRIEND - Mary Lou Stephano, the wife of the comatose cancer patient in the next room.

The Stephanos had met as students on the Penn campus 40 years earlier, in Houston Hall, across the street from the hospital.

Mrs. Stephano also expected her husband, Stephen, 62, to wake up and enjoy life again - at least for another year. Mrs. Stephano looked forward every morning to talking with Mrs. Moore in the lounge. Better than even Mrs. Stephano's children, Pat Moore understood what she was going through.

On Friday afternoon, July 19, doctors requested a meeting with Mrs. Stephano and her family. They scheduled it for Sunday. Mrs. Stephano told Mrs. Moore she thought the meeting was to update the family on how her husband was progressing. She was impressed by how considerate the doctors were.

Nurse Maguire knew that doctors didn't have much hope that Mr. Stephano would recover, and she wanted, gently, to alter Mrs. Stephano's expectations. Maguire told her that after three weeks in the MICU her husband would face a very long recovery.

Sunday morning, a few hours before the meeting, Mrs. Stephano asked the resident a blunt question: "Is he going to wake up?" She expected him to say, "Of course."

The resident took a long time to answer.

"A 15-to-20 percent chance," he told her.

Mrs. Stephano was stunned.

During the hour-long meeting, the news only got worse.

Cynthia Robinson, an attending doctor working with Collman on the MICU in July, called the meeting.

Attending doctors decide when it's time to recommend withdrawal, when to call a family meeting.

Resident doctors say some attendings on the MICU have a reputation for keeping patients going as long as possible, while others recommend withdrawing life support much sooner.

Whenever Robinson or Collman held a family meeting, at least a couple of residents or interns sat in. What they learned was a vital part of their medical education: how to help families let go.

Robinson brought the Stephano family up to date. She was pleasant, thorough and compassionate. But she was also clear: If Mr. Stephano didn't improve within a week, she would suggest withdrawing life support.

Mark (left) and Adam Moore visit Gene Moore in the MICU at Penn. They were poker-playing buddies of their granddad's.

"Keep him comfortable," the doctor said, "and let the inevitable happen."

One son and a daughter-in-law sobbed quietly, crumpling tissues into piles on the conference table.

"If he could participate in this discussion here," the doctor asked, "what would he want?"

"We never had a chance to talk about it," Mrs. Stephano said. "But he lived for his mind."

Robinson left the family members to talk among themselves. After some discussion, the family concurred with Robinson.

As they walked back to Mr. Stephano's room, Mrs. Moore could see their faces, their tears, as they passed by.

Now she knew what the meeting was really about.

MRS. MOORE AND RON always tried to arrive by 9:30 a.m., in time for staff rounds. Not that they understood much, but they might pick up something.

On Wednesday morning, July 24, they found Collman and a bevy of younger doctors clustered outside Mr. Moore's room.

Paul McGovern, the resident in charge of Mr. Moore's day-to-day care, was giving his usual technical talk. The Moores stood off to the side and listened.

"Good bowel sounds . . . hypernatremic . . . positive 2 liters over last 24 hours . . . his wedge went up initially, BP 130/70 . . . white blood count was point 6."

"Oooooh," flinched Collman. "What was his chest film?"

"Worse," said Joe Schellenberg, another doctor. "Significantly worse."

After more discussion, McGovern concluded, "The plan here is pretty much the same, changing his lines over, begin weaning. . . ."

Mrs. Moore looked through the window at her husband and saw blood in his urine bag.

After the medical report, Collman walked over to Ron and his mother, as the residents, interns, medical and pharmacy students stood by quietly. When families are around, they get quiet.

"He's had some backward steps," Collman said, looking into Mrs. Moore's soft, green eyes, which welled with tears behind the mask.

"His white count is down, most likely one of the drugs we're giving him."

She pointed to the bag with the bloody urine.

"Probably from the low platelets," he said reassuringly. "Not something to worry about."

"His X-ray is looking worse," Collman said. "The remarkable thing is his lungs are functioning well. It doesn't make sense; they look so bad, yet are functioning well."

Mr. Moore wasn't improving. And the dangerously low white blood-cell count signaled another crisis, this time for his bone marrow.

Collman knew the odds of recovery were getting slimmer with each passing day in the MICU.

Ronald Coleman talks with Betty Pryor about her mother, Rose Kennedy. Mrs Kennedy's living will declared that she wanted no mechanical ventilation or artificial feeding. Kennedy's great-grandson, Antwain Wynn, rests nearby.

"We should all get together, in the next few days, and talk about what's happening," he said to Mrs. Moore and Ron, "just so we're all on the same page."

Mrs. Moore let go a long sigh. Ron reached out and held his mother, hugged her, then held her hand.

"Doesn't sound good," he said.

"No, it's not good," she agreed.

The Moores slowly, sadly, began to put on their masks, gowns and gloves.

"He's a fighter," Mrs. Moore said quietly. "But I don't think he'd like this. What do you think, Ron?"

"He'd hate this," Ron said. "He'd hate it."

THE NEXT DAY, 43-year-old Terry Moore, the elder son, visited his father.

Terry is a fundamentalist minister, pastor of Victorious Christian Church in Marlton. He believes in the word of God. He believes that everything possible should be done to sustain a human life.

Taking his hand, Terry spoke to his unconscious father with a preacher's conviction.

"You're doing fine," he said. "Everything is going good. You're doing all right. BP's good, heartbeat is good, Dad. They're giving you some food, too, Dad. So you have every reason to be encouraged. We love you. And Jesus loves you most of all. He's right here by your side. He's got the situation right under control. . . ."

Terry Moore shared none of his mother's reservations.

He told a story about his wife's grandmother in Northeast Philadelphia. She had a stroke. "They were all getting ready to shovel dirt on her," he said. "They were withdrawing things from her, and I said, 'What are you doing? She's not dead yet.' "

The grandmother recovered.

"We believe in God," Terry Moore said. "We believe in prayer. We believe in miracles. So as long as there is life, there is hope."

BY FRIDAY, JULY 26, Mr. Moore had a new neighbor, two doors down.

Rose Kennedy, 75, had had a stroke getting ready for church that week.

In the MICU, Mrs. Kennedy was put on a ventilator. But the morning following her stroke, her family found her living will in a dining room drawer.

"If to a reasonable degree of medical certainty my condition is hopeless. . ," the living will said, "if I have brain damage that makes me unable to recognize people or communicate . . , I do not want my life prolonged. I do not want mechanical ventilation. . . ."

The family members agonized over what to do.

Collman gathered them in the conference room. He said Mrs. Kennedy wasn't in pain and might recover some function in the next few days as swelling in the brain diminished. He urged them to delay a decision.

"Her paper says no tube and no vent," insisted Betty Pryor, her daughter and the person Mrs. Kennedy had designated as her proxy.

"I agree, that's what the paper says," Collman said. But he thought she might improve.

"She's going to have brain damage. Not enough that she'll be a vegetable. But the difficult question is how much brain damage would be acceptable to her."

"When she filled out this paper, she didn't tell me anything," the daughter said. "That's why she's on the ventilator now."

The daughter was crying. "It's just so hard to make a decision. So many ifs, buts."

"Her condition is not really covered in the will," Collman said.

Betty read aloud the key sentence: "I do not want mechanical respiration, no artificial nourishment."

Collman was quick to respond.

"When somebody says no artificial ventilation, we never had a chance to ask her about four days of artificial ventilation. We see a lot of strokes. From our point of view, that's not an extreme amount of time."

"Betty, let's give her two more days and see," said one of Rose Kennedy's sisters.

"OK," whispered the daughter, crying. "I'm just trying to do what she asked me to do. . . ." Two days later, when Collman said it was unlikely Mrs. Kennedy would improve, the family chose to remove all life support.

Mrs. Kennedy died peacefully a day later, her family at her bedside, soft jazz playing in the background.

ON SATURDAY, Mr. Moore was worse than ever. Even though he was sedated, he was so agitated. To his wife it seemed as if he were trying to wake up and talk, to scream.

Terry Moore keeps vigil near bedside of his father, Gene Moore, in intensive care at Penn. As doctors fought to save Mr. Moore, 63, family members were tormented by his suffering. They were pained, too, by the question of how long to let it continue.

And his kidneys were starting to fail, a complication of his many medicines.

About 3:30 p.m., Paul McGovern, the resident, talked about Mr. Moore in the doctors' conference room.

"He's losing all his cell lines," McGovern said. "Reds, whites and platelets. He's transfusion-dependent right now."

He elaborated on the medical dilemma that Mr. Moore had become.

The treatments were wreaking their own havoc: One anti-infection drug was damaging his blood cells; another impaired his kidneys; infection-fighting steroids further decimated his immune system. And so on.

"We're doing more harm than good," McGovern said.

"My personal belief is that we probably let these people go on longer than they should."

CARING FOR EXTREMELY SICK PEOPLE is expensive. The average daily cost at Penn's MICU is $1,575. America has 78,000 intensive-care beds, and the cost of caring for patients in those beds has been estimated at 28 percent of all hospital costs.

Reformers want to make sure that patients get the care they need, but not unnecessary or unwanted treatment.

The key to humane and cost-effective intensive care is to treat those who will benefit, but not squander precious resources and impose futile treatments on those who will not.

But often it is impossible to know who will live and who won't.

Ronald Collman says America wants to offer the most advanced technology and treatments to everyone, yet keep health-care costs down.

How to balance those desires, Collman said, "is a discussion nobody wants to have."

LATER THAT SATURDAY AFTERNOON, nurse Lorrie Bokelman went into Mr. Moore's room to turn him, a routine procedure.

As she turned him, Mr. Moore stopped breathing and became so agitated that the nurse pulled the curtain shut, leaving Mrs. Moore on the other side. The nurse began to "bag" him, forcing oxygen into his lungs manually.

The curtain, a pretty plaid, fluttered as Mrs. Moore sat in her chair, next to a trash can for old bandages and used gloves, worrying.

She had heard the alarms and beeps, and seen that curtain close so many times, yet it never became easier.

Mrs. Moore folded her face into her hands.

"Is he still kind of out of it?" she asked hopefully.

"Yeah," said Bokelman. "He just tried to hold his breath while we turned him. He looked like a beet for a second."

Bokelman pulled back the curtain.

Mrs. Moore walked to her husband's side; she took his hand, stroked his head, spoke so softly that her words were nearly music.

"How you doing, love? Just breathe, slow and easy, slow and easy, babe. It's all right."

ON SUNDAY, JULY 28, Mrs. Moore took an RV guide to read. But before she and Ron could gown up, Collman and McGovern called them into the family room.

Mr. Moore's blood pressure was plunging. He appeared more agitated than ever.

Already that morning, doctors had suctioned "coffee grounds" - dried blood - out of his stomach. They also found something alarming on his chest X-ray.

Collman wanted a family meeting.

Mrs. Moore called Terry, then she and Ron collapsed in a corner of the hallway by the waiting rooms, sobbing in each other's arms.

Even though Mrs. Moore had seen so much, had endured so much, 21 days in the MICU, this news devastated her.

Until this point, no doctor had suggested she give up hope.

She still had reservations the following month for their favorite apartment in Ocean City, Md.

Collman assigned Mr. Moore a new status: Do Not Resuscitate: Level B. This meant that no additional treatment of any kind, no more blood or antibiotics would be given. But life-sustaining care - the ventilator, the blood pressure medicine - would continue.

At least until the family meeting.

Nurse Bokelman injected Moore with a significant dose of an anesthetic to relax him.

When Mrs. Moore gathered herself and walked back into her husband's room, he was resting more easily than he had in a week.

"Ohhhhh, that's better," she said with relief.

When Terry Moore arrived shortly after noon, the family gathered in the family lounge.

"Your dad has been through a series of complications, and with each complication are new complications," Collman said to Terry.

"We gave him a full course of treatment. The bottom line is that he overall has gotten much worse. . . . The blood counts are worse. He's fevery again. Lungs are worse. And he's had a real deterioration today. The big picture is the situation has progressed to the point where, in my medical opinion, there is no way we're turning this around.

"What worries me today is he seems much more uncomfortable. Lorrie's worked very hard to keep him comfortable.

"What I think we're doing is giving him treatments just to give treatments. They're not helping him. They're not prolonging his life."

Collman continued: "I think we should make absolutely certain he has as much pain medication as possible, even if that means the blood pressure gets lower, because keeping him comfortable is most important.

"I recommend we wean him off all the medications he's on, except for pain and sedation. I think it's likely if we stop the blood pressure medicine, he won't last very long."

Terry recounted the miraculous recovery of his wife's grandmother.

Terry was polite but direct.

"I don't want your mind-set - whether you're pro-abortion or whatever - to affect your decision," he said to Collman. "Have we maxed out on every technological thing - not just to keep him going - but to bring about a recovery?"

Collman responded softly and looked right in Terry's eyes. Mrs. Moore held her son's hand.

"I believe we have not missed anything that could possibly help him recover. I'm even afraid we have possibly gone too far. We're at the point now, there is no chance of making him better. And I'm afraid we're making him suffer."

Collman asked the family to talk about it and let him know their decision. He shook their hands, thanked them, and left the room.

"Daddy was a fighter, all the way to the end," Mrs. Moore said. "But we have to let him go. Things are overwhelming."

"You make the decision, Mom," said Terry. "I'm satisfied they've done as much as they could do. It's in the hands of God."

Mrs. Moore went to find Mrs. Stephano. She needed someone who understood how she felt.

Doctors had removed all life support from Mr. Stephano two days before and moved him to the step-down unit, down the hall from the MICU, to spend his last days or hours.

Mr. Stephano's room was empty.

He had died the night before.

BY 4 P.M., THE HARD DECISIONS had all been made. Gene Moore was peaceful. His family was resigned to his death. Bokelman inconspicuously reduced the blood pressure medicine. She turned off all the alarms and beeps - no more mechanical distractions.

The family surrounded Gene Moore. They whispered their final farewells. Mrs. Moore rested her head against his chest.

"Love you a whole bunch, sweetie pie. I love you so much. Here's Ron, your bowling buddy, holding your bowling hand. Just relax," she said to him softly, almost singing. "Just relax."

By 4:45, he had no blood pressure, but the heart kept fighting.

Finally, at 5:15, Gene Moore's heart stopped.

Terry walked out and scribbled on his father's medical chart: "Homeward bound to see Jesus."

FOUR DAYS LATER, on Thursday afternoon, Ron and Terry went to a Quakertown funeral home and returned home with a cardboard box filled with their father's ashes.

Mrs. Moore was surprised at how much the box weighed - four or five pounds.

Just as Gene Moore had wanted, the family gathered in a wooded area of the family's property. In front of a tall pine, on the side of a hill, Mrs. Moore sprinkled the ashes of the man she married at 16. Terry said a prayer.

They opened a bottle of champagne and drank from plastic champagne glasses.

Patricia Moore weeps as Gene Moore, her husband of 44 years, lies dying. "He's a fighter," Mrs. Moore said. The fight required a ventilator, a feeding tube, and an IV line carrying medicines.

SIX WEEKS LATER, Mrs. Moore still couldn't write thank-you notes to those who had sent flowers and cards.

"I just can't get started," she said. "I can't get back to living again."

Every day she relived the MICU.

"I have to conjure up all those awful things in order to say it was the right thing to do," she said. "I have to think of all the bad things to justify why we let him go."

Ron said, in retrospect, that he would have withdrawn care much sooner.

Yet Mrs. Moore said she would do it all over again. She would fight until the doctors gave up hope.

EPILOGUE: Two weeks ago, Mrs. Moore had lunch at Mrs. Stephano's house. They were joined by another woman they met on the MICU, whose mother had died after a long fight. "We all had red noses and went through many tissues," Mrs. Moore said, "but it was very cathartic. It was wonderful."