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Sunday, Oct. 17, 2010

Medical Challenge: Finding more balance in decision making at the end of life

By Michael Vitez, Inquirer Staff Writer

See related photos taken by
Philadelphia Inquirer staff
photographer and Pulitzer-prize
winner Tom Gralish.

Prince Pulido loved his mother. She named him Prince, after all.

And he couldn't let her go.

It didn't matter to him that nurses at Abington Memorial Hospital thought he was harming her by keeping her alive, or felt he was unrealistic - believing that stem cells could regenerate her brain.

This was his mother, she wanted to live, and she had always bounced back.

For more than a year, Maria Pulido was kept alive on a ventilator. She had respiratory failure, heart disease, dementia, and diabetes, and had both legs amputated, one after gangrene. By last winter, medical records show, she was in or near a coma - unresponsive, couldn't follow commands, would react only to pain.

Prince knew different. She smiled at him. He saw the gleam in her eye.

On May 14, the breathing tube in her throat got clogged and fell out during suctioning at a nursing home. She went without oxygen for 10 minutes and suffered brain damage. Even Prince could see her stare was blank. Still, he continued life support.

He believes in God and in miracles. He's a Philadelphia fireman who races into burning buildings. There's always hope.

Ten times between June 2009 and July 2010, Maria Pulido went by ambulance from a nursing home for ventilator-dependent patients to Abington's intensive care unit, where she spent 69 days and accumulated charges of $1.2 million.

What, if anything, should America do when families insist on continuing life support even though doctors and nurses believe it just prolongs dying?

And why, finally, on July 14, did Prince Pulido decide to let his mother die?

Path of Aggressive Medicine

About 2.4 million Americans die every year, an estimated 400,000 in an intensive care unit.

Most Americans don't want an ICU death, but many start down a path of aggressive medicine that takes them there. Some doctors say they themselves are partly to blame. They need to do a better job early on telling patients with chronic illnesses the risks and grim realities that likely lie ahead.

But doctors get paid to treat, to do procedures. And they don't get reimbursed to have difficult and time-consuming conversations, to deal with family members who want explanations or have objections. It's easier for doctors to say, "Go for it."

Increasingly, patients who start down that aggressive road are deciding - when hope is gone - to surrender, to focus on comfort at the very end, doctors say. Palliative care teams, meeting with families, have helped that happen.

For those who choose - or whose loved ones choose - not to surrender, they can live longer than ever these days because of care advances in the last 10 years. These therapies won't restore the brain, lungs, or liver, but they can prevent or delay the blood infection that might have killed the patient earlier.

Virtually all physicians agree with the right of patients or their loved ones to make decisions regarding care at the end of life.

But virtually all physicians also agree they have an obligation to use precious resources wisely. And all doctors pledge to do no harm.

The challenge for America, and for medicine, is to figure out a better way to balance these competing principles, to protect patient autonomy but also avoid overtreating dying patients and wasting precious resources.

The Patient's Life

Before she became a patient whose life story was written in medicalese - "79-year-old female with PHM of VDRF, CAD/MI/CABG, DM-2, HTN, PVD s/p right AKA 12/2008" - Maria Pulido was a person. (AKA, to translate just one abbreviation, stands for above-knee amputation.)

To Prince, 45, this was his mother, a Panama native who came to America with her husband, a jockey of some note back in the 1950s and 1960s. A feature story in the Daily Racing Form in 1969 described Maria as the first female agent, booking her husband's races.

In more recent years, she was a doting grandmother, who chose the Kensington rowhouse where Prince and his wife moved after they got married because it was only a block away and she didn't want them going too far.

A few years ago, she also began suffering from dementia. Prince's wife, Nahir Pulido, said Maria would see a fire on television and run outside in fear.

Prince is convinced that poor medical care before she got to Abington - waiting too long, for instance, in 2008 to amputate the gangrenous leg - contributed to her decline.

"She'd still be here with me," he said.

Prince's father suffered some setbacks and lost contact with the family when Prince was 16. Prince's brother died a few years ago.

He didn't want to lose his mother.

The Epic Struggle

When Maria Pulido first arrived at Abington, she was somewhat alert, said nurse Evelyn Yampolsky. Maria couldn't speak because of the ventilator tubes down her throat, but she could mouth words, and Yampolsky, bilingual, remembers translating for her around Halloween 2009. She also remembers grandchildren coming in to sing "Happy Birthday."

But by Christmas, nursing and physician records indicate, Maria Pulido was no longer alert.

Yampolsky and other nurses began to feel frustrated and troubled caring for her.

Nurses choose intensive care because patients' medical issues are so complex and dire, and they love helping them through these epic struggles.

But aggressively caring for patients who will never get better is a major cause of burnout for intensive care nurses, well-documented in the medical world as moral distress.

When there is no chance of recovery, aggressive medicine begins to feel like battery, an assault on the patient's dignity and the nurses' sense of humanity.

"Philosophically our career is based on the phrases 'Do no harm' and 'dignity in death,' " said Yampolsky. "These phrases are not honored in a case like this. She was not allowed to die with dignity, and we were forced to do her harm.

"I know he felt he was doing the right thing," she said. "I had these conversations with him. But I also saw he was torn and needed hope in a situation that was beyond his control. He hung on to a hope that was not there for at least a year or more."

Many nurses felt the same as Yampolsky.

"I feel like there was this span of six months when she kept coming in, having repeated hospitalizations, and there was absolutely in my mind no quality of life," said Patty Linnus, another nurse. "She was absolutely not responsive.

"That's why I say, 'Just because you can doesn't mean you do,' " Linnus said. "However, she had the best care whenever I took care of her. I would check my feelings at the door before I would go in. Whatever she needed, she got."

Prince Pulido would be the first to tell you his mother got great care at Abington. "Second to none," he said.

And he asked the nurses for their opinions.

Before May 14, he and his wife said, doctors and nurses were wrong: His mother knew exactly when he walked into that hospital room, and she squeezed his hand.

"She opened the eyes and smiled at my husband," said Nahir, Prince's wife. "I believe she was saying, 'I no surrender.' "

Gone to Heaven

After May 14, even Prince's 5-year-old son, Juan Pablo, named after the pope, looked at his grandmother lying in the bed, and told his parents that Nena had gone to heaven.

Prince remembers those weeks of May and June.

"Now when I would come visit my mom, there was no more smiles. No more smiles. Just a glare at space. They told me it was irreversible. I was sad and everything, but I still had my mother.

"Some people right there and then would say, 'What about her quality of life?' But everybody must cross this bridge when they reach it. The doctor spoke to me. Palliative care spoke to me. I was hoping. I had faith that maybe it would be able to reverse itself."

He told the doctors and nurses that he had seen a show on the Spanish TV network Telemundo in which embryonic stem cells were implanted in the brain of a man in Mexico with Parkinson's disease and the new cells regenerated the brain and the Parkinson's went away.

He told them that he hoped something similar might happen to regenerate his mother's brain.

The nurses and doctors did their best to treat him with respect, and to explain to him that this was never going to be a possibility in the United States, certainly not any time soon.

Todd Groeber, the nurse manager in the Medical ICU, said Prince was no different from millions of Americans who read things on the Internet, or see things on television, and believe medicine can do almost anything, especially when they need a miracle.

At the same time, Prince insisted that if his mother's heart stopped, doctors should restart it. This involves pounding on the chest, sometimes even breaking ribs.

"One time we were coding her and we wanted him to see what we were doing," said Linnus. "And he wasn't here. That's very hard."

'It was just wrong'

Kruti Patel had just graduated from the Stony Brook School of Medicine in New York, and started working in June as a first-year resident in Abington's Medical ICU, known as the MICU.

Maria Pulido became her patient, and as a new doctor, Patel found the situation disturbing.

"I felt it was just wrong," she said. "Nothing was being gained. I felt like this person was not having justice done to her. And no justice to the system.

"We talked about it briefly with our attending at the time," Patel continued. "Like there should be a way for someone else to step in. Isn't that OK? But my attending made a good point. Where would you draw the line?"

That attending physician was William Ward, a pulmonologist whose group covers the MICU.

Ward said he had hoped there would be constructive discussion about futility and the use of resources at the end of life during the debate over U.S. health care reform. But with hysteria about death panels, there was no chance.

Ward noted that in many other countries, Maria Pulido never would have been put on a ventilator. But America has long had the resources and the will to give all patients a fighting chance at the end if they want it.

He said defining futility was so difficult. If staff thought Maria Pulido had no chance of recovery, no joy, no dignity, he's not surprised her son saw smiles and a gleam in her eyes right up until May 14. And even after May 14, he said, in her compromised state, she had value to Prince. What families see is not what doctors see, Ward said, and clinicians sometimes forget that.

In his experience, when families insist on futile care, the reason isn't that they expect a recovery, but that some other issue, unresolved, prevents a relative from letting go. Yampolsky, the nurse, said that decision-makers like Prince Pulido sometimes needed "permission" to grieve, and that it was the ICU staff's job to help them get to that point of accepting death.

Ward believes strongly in patient autonomy. At the same time, he added: "If this intervention's not going to make them better and could potentially hurt them, then most physicians are in their right to withhold those measures. I think most physicians probably don't because they're more worried about the legal climate."

A Bold Move in Texas

Texas has taken a bold and controversial step, one that other states are considering.

Eleven years ago, the legislature passed the Texas Advance Directives Act, signed by then - Gov. George W. Bush.

In Texas, when a doctor believes that it is inappropriate to continue life-sustaining treatment, he must notify the patient's decision-maker of the intention. After 48 hours, the doctor meets with the hospital ethics committee, and the family may present its point of view as well.

If the ethics committee agrees with the physician, it can issue a formal letter and give the decision-maker 10 days to find another hospital. On the 11th day, the doctor can withdraw life support and is legally immune to civil or criminal action.

In Pennsylvania, New Jersey, and virtually every other state, there is no such immunity, so doctors typically do not intervene.

Robert L. Fine, a physician and an ethicist at Baylor University Medical Center and architect of the Texas law, believes that while imperfect, it has worked well.

The law is not invoked often, he said, precisely because it has changed the culture and dynamic in Texas at the end of life.

Families, he said, now understand they no longer have absolute say, and this encourages more conversation between doctor and family.

Opponents say the Texas law is flawed: 48 hours are not enough for a family to prepare, the 10-day period is too short to find a new hospital, and the ethics committees are too insular and likely to rubber-stamp what doctors want.

Robert Truog, professor of ethics and anesthesia at Harvard Medical School, said the ethics panel acted as "surrogate judge and jury" under Texas law, violating the American judicial system's guarantee of a "jury of peers."

Thaddeus Pope, a law professor at Widener University who follows futility issues closely, said the Texas law had become a national model in the last two years.

"Medical societies in many states are passing resolutions instructing their lobbyists to push for this, to go and draft a model bill like Texas," he said.

Pope said he hoped states copying the Texas law would replace the ethics committee with a more diverse panel from outside the hospital.

Fine, architect of the Texas law, said: "The reason to stop treatment is not because money can be better spent elsewhere. It's because you're not doing anything to truly benefit this patient."

But in the next breath, he said medicine needed to deal with this futility issue before the bean counters did.

"Look at what's best for each individual," Fine said. "If we as a profession don't start doing that, I do think the nice people in green eyeshades will just start saying, 'You've reached your limit, and that's it.' "

A Crisis in the ICU

John Hansen-Flaschen, head of pulmonary and critical care at the Hospital of the University of Pennsylvania, has been doing rotations through intensive care there for 30 years, and said the problem had reached a crisis stage at his hospital.

"Our MICU situation is desperate," he said. "What we're feeling and experience is resources get increasingly committed to people who are not going to recover."

He said patients who could benefit much more from an ICU bed sometimes were forced to wait.

He said doctors must "weigh your allegiance to conflicting principles. Autonomy is a patient's uncle who wants the patient to live forever with very little benefit, leading to a use of a limited resource, the ICU. How do you balance those two, and who is authorized to make that balance? Right now we don't make that balance. The autonomy principle prevails 10 out of 10. It trumps the wise stewardship of limited resource every time."

Hansen-Flaschen said he had finished a rotation at Penn's MICU in September. "We had 20 deaths in two weeks in a 24-bed ICU, not uncommon at all," he said. Eighteen died "after decisions made to limit life support, all being made very late. Most people do come to a decision to remove life support somewhere along the way. But some never get to that point, and they're living longer than they used to."

$1.2 Million Hospital Bill

Abington's charges for Maria Pulido's 69 days in intensive care totaled $1,218,981.

She did not have enough work history to qualify for Medicare, so her medical bills were paid by Medicaid, the government-run program for the poor, which pays hospitals the least of any insurer.

Medicaid paid Abington $78,819, just 6 percent of charges.

Just from May 14 to her death, charges were $527,241 and Medicaid payment was $32,917.

Ward and his colleagues in pulmonology had "42 encounters" with Maria Pulido in 2010. They billed $7,885, and Medicaid paid $558.

Prince Pulido said cost had never concerned him when he made decisions about his mother. If the government could bail out the car industry and Wall Street, what he called welfare for the rich, it could keep his mother alive.

But if the government or the American people would decide that he should pay, he said, "if I had to find another job and work two jobs to pay for the well-being of my mother, I woulda did it."

Some say families and patients should share a fraction of this cost, and that might alter their decisions. Others say this is unethical and unfair. The only charge to Maria Pulido for those 69 days was $180 for a bill that Medicaid didn't cover.

"Patients with chronic illness in their last two years of life account for about 32 percent of total Medicare spending," much of it due to repeated hospitalizations, according to the Dartmouth Atlas of Health Care.

Thirty-two percent of the Medicare budget in 2010 is $162 billion.

She Made the Decision

Prince Pulido never gave up on his mother.

He believes she made the decision to die.

He began to see that no matter what he wanted, her body was breaking down. She was failing.

As June turned into July, her blood pressure was plunging. Her kidneys were failing. Her body was being ravaged by drug-resistant bacteria, almost inevitable among patients so vulnerable for so long.

On July 11, when Maria Pulido made her 10th and final trip to the MICU, Prince agreed for the first time to a DNR order - do not resuscitate. No more chest compressions and shocks. If the heart stopped, let her die.

Prince agreed to this after a long conversation with Stanislav Zayets, a third-year resident. They talked in the emergency room, as Maria Pulido was being admitted one last time.

Zayets said he wasn't sure what he had said that changed Prince's mind, but speculated, "Maybe because he realized that his mother had enough and maybe because I used the words 'quality of life,' looking at the poor, amputated, anoxic brain-injury patient on chronic vent with no hope of recovery."

Prince also talked several times in those last days with first-year resident Ravi Desai, and said he had found those conversations helpful.

Desai recalled that Prince had felt a strong sense of guilt about his mother, that he had left her alone in a nursing home in the spring of 2009, when he had to be in Puerto Rico, and she really deteriorated in his absence.

Desai said Prince repeated two or three times: "If I never left her, this would never have happened."

Then they worked through what Desai described as Prince's "false hopes" regarding stem cells and regenerating his mother's brain.

That took two or three conversations, Desai said.

Prince did come to accept that this stem-cell procedure will never happen in America - but not because it doesn't exist. He believes pharmaceutical companies would never allow such a treatment because of all the money they would lose on drugs that would no longer be needed.

One Final Sign

And there was one final sign that greatly influenced Prince's decision.

A few days before Maria's death, Nahir and Prince were driving to the hospital when a nurse called Nahir on her cell phone. The nurse said the doctor had just seen Prince leaving his mother's room, and wanted to reach him.

Prince was in the car with Nahir, and had not been to the hospital that day.

Nahir and Prince knew this was the spirit of Prince's dead brother, visiting his mother, saying goodbye.

"People talk about the spirits and say, 'Oh, it's all a lot of hogwash,' " said Prince. "It's not. I don't try to explain it to people, because they can't comprehend it, because they don't know about it."

On July 13, Nahir, who is studying to be a social worker at La Salle University and recently completed a course on grief and loss, sat with Prince at his mother's bedside.

"Prince, you can't be selfish," she told him. "God gave you your mother for a long time."

Prince looked at his mother: bloated, eyes closed for good, double-amputee, multiple organs failing. "The picture says a million words," he said. "And I went home and I prayed."

He said the Serenity Prayer - God grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference - and the 23d Psalm: "The Lord is My Shepherd."

On July 14, he awoke and made his decision: "I believe there is a supreme being," Prince said. "The night before, I seen the condition she was in, and I said I couldn't be selfish any longer."

He told the staff, and they told him to take as much time with her as he wanted. Prince didn't want to be there when she died, and he left that afternoon. Once they turned off the ventilator, his mother breathed on her own for several hours. Doctors made sure to keep her comfortable with morphine and other drugs.

Kruti Patel pronounced her death about 4:30 a.m. on July 15. The hospital called Prince later that morning.

"I knew when I received the phone call," he said. "I knew my mother passed. And I was sad, but I know this: She won't have any suffering anymore."

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