When a ‘Good Death’ Isn’t for Everyone

She could not have wanted to go this way, with family and doctors still arguing, even as her body was shutting down.

For several weeks, doctors and staff at St. John’s Health Center in Santa Monica had pulled out all the stops: They saved Shayesteh Afshar’s life after the 68-year-old suffered severe heart failure. They fought for her as her lungs, kidneys and liver failed, mobilizing life-support machines as she slipped into semi-consciousness. And, when she didn’t respond to treatment, they brought together specialists, ethics counselors and social workers who explained to Afshar’s husband and four sons that her chances of recovery were almost zero--and that it was time to consider winding down life support.

The Afshars had refused. Highly educated and fluent in English--three sons now live in Los Angeles--they are Muslims from Iran, who are deeply skeptical of the way U.S. hospitals manage care of dying patients. Already overwhelmed with grief, they were bewildered by doctors’ suggestions that they somehow help their wife and mother die.

“Back home we would have had a friend of the family, a doctor, taking care of everything,” says Arash, 38, the youngest son. “The question of letting her die would never come up in Iran.”

But it did here, most urgently one January morning in 1996, when Arash’s cell phone buzzed.

“Your mother’s dying, we’re losing her,” said a voice into his ear. “What do you want us to do?”

“You do what you’re supposed to be doing,” Arash said. “You keep her alive.”

So on her last day, the mother of four who loved poetry and cooking lay unconscious as doctors pumped her full of drugs to rev up her exhausted, failing heart. By all accounts, the scene in Room 273 was a blur of grief and activity: family members arriving, doctors and nurses working furiously, the fragile patient fading fast, her body still scarred from the prior surgery. Desperate to spare her the chest-pounding of CPR, one of the doctors, John Robertson, turned to the family: S omeone please tell me not to do this, he said , I don’t want to do this .

For more than a generation, hospitals, policymakers and medical ethicists have worked to help patients fashion for themselves a humane end. The “good death,” as it’s sometimes called, is based on informed decision-making: Tell patients promptly when they’ve got a fatal illness, and they will have a chance to make a dignified exit, one without pain, for instance, surrounded by family. Many Americans have prepared living wills, spelling out their wishes in case they’re not coherent; millions have arranged to die at home through a program known as hospice. The majority of elderly Americans say they want to direct their care at the end, and to avoid the cold embrace of ventilators and feeding tubes.

The majority--but not everyone. Doctors across the country are now realizing that a growing number of Americans, particularly recent and first-generation immigrants, resent the assumptions that they want to stage-manage their own end or forego lifesaving technology. Pushing a “good death” on them usually backfires, creating more trauma for patient and family. Though statistics are sketchy, doctors say many of these dying patients, such as Shayesteh Afshar, land in the emergency room, with no plan at all beyond keep me alive . The issue is particularly complex in Southern California, where more than 100 languages are spoken, from Farsi to Vietnamese, each group of people with its accompanying customs and assumptions. “We’ve come very far in defining what a good death means for most white, middle-class Americans,” says Dr. Leslie Blackhall of the University of Virginia Center of Bioethics.

“But we have to be careful that we don’t project those ideas on people from different cultural backgrounds, who may want more lifesaving technology than we would want, who may not want to make all the decisions.” Forcing our ideas on people from different cultures and backgrounds can do more harm than good, she says.

Dr. Leon Morgenstern, director of Cedars-Sinai Medical Center’s bioethics program, says, “What we consider the norm in managing end-of-life care is really a Western concept of bioethics, and now we’re finding big problems with it because there are so many non-Western cultures living all around us.”

Customs Vary Widely Among Ethnic Groups

Generalizing about ethnicity and culture is a fool’s game, treacherous by nature. “The last thing you want is for people to start making shopping lists--Koreans do this, Mexicans do that,” says Barbara Koenig, director of Stanford University’s Center for Biomedical Ethics. “We find that there’s wide variation of views within all ethnic groups, and even within individual families.”

Nonetheless, some broad strokes can be drawn:

* Life-support technology. In a study of 139 patients visiting a Miami teaching hospital, doctors found that 37% of blacks and 42% of Latinos would want their doctor to keep them alive, regardless of how sick they were. The comparable figure for white patients was only 14%. When compared with their white colleagues, black doctors are also more likely to say they want access to life-support machines at the end of their lives.

“And these are people who know what it looks like to be on a ventilator, to be on feeding tubes,” says Dr. LaVera Crawley, a professor of medicine at Stanford’s biomedical ethics program. Many African Americans don’t believe the medical system is going to really take care of them, Crawley says, not because they don’t trust doctors but because historically many have bad experiences in hospitals.

* Religion. Religious teaching on life support varies widely, across and within denominations. As a rule, researchers say, fundamentalists or conservatives of any stripe tend to be less willing to withdraw life support. But religious counsel often depends on the medical details of the case. According to Dr. Maher Hathout, a cardiologist and spokesman for the Muslim Public Affairs Council, most Muslim scholars now agree that families such as the Afshars are justified in withdrawing life support--if the patient has been declared brain-dead (Shayesteh had not been).

* Informed consent. In a 1995 survey of 800 elderly people in Los Angeles, Blackhall and a team of USC researchers found that 45% of Korean Americans and 65% of Mexican Americans would not want to be told if they had a fatal illness. Nearly 90% of black and white Americans said they would prefer a straight prognosis. Korean Americans and Mexican Americans generally expected family members to make medical decisions for them, if they were fatally ill, while most black and white elderly preferred to make their own decisions.

“One thing cross-cultural work has documented is that not everyone wants straightforward information,” Koenig says. “Yes, a 55-year-old lawyer may want to control everything about his or her life; but a lot of people want to be taken care of, they don’t want to be their own doctors.”

Some Patients Don’t Want the Bad News

None of which is news to doctors in Southern California. Many say the explosion of different cultures over the last 15 years has vastly complicated that most dreaded duty--telling a patient that he or she is fatally ill. “We see people from every village, every theological group on the planet right here, from Buddhists and Mormons and Catholics to fire worshippers and Zorastrians,” says Dr. Steven Kamajian, an osteopath who practices at clinics in Montrose and Glendale. “And they all have different ideas about what to tell the patient.”

Kamajian prefers telling patients the truth, as gently as possible. “My responsibility is ultimately to the person who’s sick,” he says. But others dance around the D-word, when they feel it’s in the best interests of the patient and family.

When her husband, Narsis, was diagnosed with terminal prostate cancer last year, for example, Arpi Kalikian, 71, a former schoolteacher, was insistent that he know nothing of his prognosis. “Some doctors, they are very rude, they would say, ‘He has cancer, he has to know,”’ Kalikian says. “But I knew that Narsis would have become demoralized immediately if he had known. I wasn’t going to let it happen.”

After a close call, when her family physician attempted to break the bad news, Kalikian, of Glendale, found a specialist who understood her predicament and kept details about her husband’s condition in confidence.

Together, she and the doctor arranged for Narsis to receive at-home care and pain control through a hospice program. “Narsis never knew he was dying, not really,” Kalikian says. “I would tell him, ‘You’re OK, no big deal, it’s curable.’ ” It is now an open secret among hospice workers serving culturally diverse populations that doctors and nurses must sometimes finesse informed consent. The patient signs the hospice forms, but it can be unclear how much the patient really understands about his or her prognosis. Nurses say the hospice must, at some level, trust relatives to communicate to the patient what hospice means.

Pattie Gocke, a nurse supervisor at VNAcare, a nursing support and hospice provider in Glendale, which serves many Armenian families, describes how difficult that process can be. When she visits families to discuss hospice, she says, “I have the whole family sitting around and absolutely nothing is said about disease. Nothing. You never say the C-word [cancer], the D-word [death] or even the H-word--hospice. And you better come with a smile when you visit the home. If you’ve got a long face, they won’t let you in the door.”

And for good reason. In many non-Western cultures, researchers say, these words themselves have power to induce real, physical symptoms. According to UCLA anthropologist Kyeyoung Park, for instance, the mind-body connection is strong enough for many Korean Americans that “if the doctor tells you you’re going to die, you really do deteriorate, more quickly than you would otherwise.”

Many traditions have similar beliefs: Simply hearing the D-word, especially from a doctor, will strike you down. In many Korean families, Park says, the custom is to keep fatally ill relatives in the dark at first, allowing them to figure out what’s happening gradually, by intuition.

As the influx of non-Western immigrants continues, says Blackhall, more U.S doctors will have to at least become aware that these different traditions exist. “Instead of the sort of patient who comes out very strongly and says, ‘I want this and that,’ now we have a situation where there are people from all sorts of cultures coming through, and if you’re ignorant about that culture--and we all are--then you have no idea how to go about it. You need to try to read a family, and be somewhat sensitive to their cultural background. Otherwise you may be making mistakes without knowing it.”

Such as wearing a Mickey Mouse hat, for instance.

Balancing Humor With Sensitivity

Dr. John Robertson, Shayesteh Afshar’s heart surgeon, has what’s considered the largest collection of surgical hats anywhere, running from Harley-Davidson to tie-dye to a headdress of peacock feathers that nearly touch the ceiling. In his long and successful career, Robertson has found that the hats almost always bring some relief to people in crisis. “I started wearing them back when I used to operate a lot on kids,” he says. “You know, they’d be looking up at me like, ‘Who is this alien?’ But you put a hat on and it makes you more human.”

The Afshars were not amused. A Mickey hat, on this big, loud, confident figure, this John Wayne in scrubs. “The very things that help Dr. Robertson connect immediately with most patients caused problems here, for cultural reasons,” says Gretchen Case, coordinator of St. John’s ethics program.

“I thought, ‘Who is this cowboy, this football player?’ ” says Arash. “He came into the room with that hat,” says another son, Bahram, 52. “We did not trust him.”

That would change. But not before the Afshar sons fired one of the specialists who consulted with them and brought in one of their own from outside the hospital. Not before more than one St. John’s staffer signed off the case out of frustration with the family, Case says. The fundamental problem was the same throughout, the Afshars say: As doctors continued to consult them with treatment choices, and whether to continue life support, the family only grew more skeptical of the hospital’s commitment to the patient.

Some at St. John’s assumed that the family was consulting a cleric to make medical decisions. In fact, the sons were going on the Internet to learn about drugs, life-support machines and recovery rates. For their part, the Afshars assumed that the hospital wanted to “wind Shayesteh down like a toy.”

In fact, Robertson, Case and the others were trying most of all to avoid a code blue emergency resuscitation order requiring hospital staff to take often extreme measures to revive dying patients. “You do CPR on someone whose just had heart surgery and often the wounds break open, and it’s just a mess,” Robertson says. “There’s no reason to do it on someone who has no chance of recovery.” The tensions boiled over at one meeting between the family and hospital staff, when Arash openly challenged Robertson’s decision on which drugs to try. Robertson almost blew his hat.

“He was very angry,” says Arash.

“He said something like, ‘You find someone who knows this better, you bring them in here,”’ says Kooshiar, 48, another of Shayesteh’s sons.

In this environment, Case says, it was all but impossible to work out a plan that would allow the patient some semblance of a dignified end. As Shayesteh lingered on life support, Case and others at St. John’s searched in vain for some way to present the Afshars with an acceptable way out, one that did not violate their own customs. “Western medicine is so focused on choice and autonomy, we’re comfortable making these decisions--we want to make them,” she says. “But in other cultures many people don’t have the comfort level or the authority to make” what they see as life-or-death choices.

The Afshars would not budge.

On that morning in January when the men and their families burst into Room 273, Arash says, the grief was breathtaking. “It was so sad,” Arash says, “you could not speak.”

Even as Robertson challenged them to spare Shayesteh CPR-- I do not want to do this, I’m not going to do this --family members balked, Arash says.

Several fragile heartbeats later, the tension broke: “I said to Dr. Robertson, ‘You make the decision, based on medicine, based on your experience,”’ Arash says. “We could not make that decision ourselves.”

After two months of back-and-forth, after a cultural dance that prevented any real plan for this very moment, the Afshars had finally come to trust their doctor. If that bond had formed earlier, Case says, then Shayesteh’s end would have been much less harrowing for everyone. “Once the family let Robertson make the decision for them, their shoulders just dropped--they were relieved,” she says. “In many other cultures I think paternalism has a role, some people want the doctor to take charge.”

At 10:40 a.m. on Jan. 16, 1996, Shayesteh Afshar died. “She went out like a candle,” says Arash.

Few at St. John’s who were involved have forgotten constant questioning by the family, the mutual suspicion between the sons and doctors--and how it all broke only at the very end, minutes before the patient died.

“I don’t think any other hospital would have done this much for us,” Arash now says. “I don’t think I know a doctor more compassionate than Robertson.” All of the brothers still visit Room 273 regularly. “I think about it all the time, the end, those last weeks,” says Kooshiar. “I wonder what we could have done differently. I wonder if we did the right thing. Mostly I wonder if she suffered.”