University Times

Charlotte Bell was a Head Start teacher working in the Minneapolis area in December 1989 when she suffered a stroke and died. In a gesture of love, Bell's family placed a card bearing the photos of her students in her coffin.

It was then that the trouble started.

As it turned out, 20 of the 23 children in the photographs belonged to Mung families from Laos. To have a photo put in a grave is a catastrophe in Mung culture. Such an action, the Mung believe, causes the spirit of the person in the photo to leave his or her body and places that person in grave danger of sickness and other troubles.

When the parents of the Mung children learned what had happened, they were outraged and insisted that Bell's body be exhumed and the photos removed. They then conducted a spirit-calling ceremony to bring back the spirits of their children. Bell's story is a good example of the differences in meaning that people attach to death, according to David Barnard, chair of the humanities department at Penn State's Milton S. Hershey Medical Center. Barnard spoke here last month as part of the "Ethics Grand Rounds" series on "What Is a Good Death? Culture, Tradition and the Current Practice of Palliative Care." "From the point of view of Charlotte Bell's family, it was nothing other than a sentimental, commemorative act, part of their way of dealing," said Barnard of the photo incident. "Whereas, it was a tremendously threatening gesture to the Mung." From the Mung point of view, according to Barnard, a good death was wider than the emotional sphere of the Bell family. The concern for the Mung were the ramifications of death throughout their community.

"When we ask the question, what is a good death, we need to be prepared for truly breathtaking diversity in the answer to that question," Barnard said.

When it comes to death, diversity takes two main forms, according to Barnard. "In asking what makes a good death, what aspects of death are we talking about?" he said. "Then for any given aspect, what is the ideal?" Cultural and religious factors, social and historical context, the degree to which health care systems are influenced and shaped by science, technology and bureaucracy all play a role in determining a good death with numerous shades of gray in between, according to Barnard.

When some people talk of dying, especially those who work in palliative care, they are referring to the process of dying, the experience of pain, suffering and communication. "What is it like in the death bed?" Barnard said.

Other people when they talk about a good death are referring to a general encounter with mortality, not just symptom management, although a good death also can mean a clinically optimized death, according to Barnard.

"We have applied every palliative treatment exactly right," he explained. "We have the morphine right. We have the anti-nausea medications right. We don't have any messy hemorrhaging going on, the death rattle is controlled with a drying agent, so nobody is freaked out by that gurgling sound, so it was a good death." A good death also might be a morally or spiritually significant passing, according to Barnard. "I do not see these [a clinically optimized and a spiritual death] as in any way mutually exclusive," Barnard added. "They can often be on people's minds on both sides of the equation." In American society, Barnard said, there has been a general shift since World War II toward a focus on the process of dying and the medically managed experience of the individual rather than on the fate of the soul or the ramifications of the death on the social group. "We've focused on what we can control at the bedside," he said, "which means, in my opinion, there is more pressure on the individual patient, the family and the health professional acting in relative isolation to bring about a good death, which is increasingly identified with what happens during the dying process." Still, there are ambiguities and tension between letting every person do his or her own thing when they are dying and trying to encourage or induce a death that conforms to an ideal. Traditional practices and behaviors around the dying are supported by broadly accepted beliefs and customs. "That's a very important element," Barnard said. "People know what to do. They know what to say. There is a role for the community. Death and grief and meaningful public experiences have their place in the order of things." On the other hand, there are large numbers of people for whom it is more the private and individualistic meaning that takes precedence.

"I'll decide as a person on my own what I think is important about life and death," Barnard said, "not what traditions tell me to think. That's old, oppressive, authoritarian stuff.

"In the face of death," he continued, "many people and many families feel they have got to go it alone, dealing with it on a sort of ad hoc basis, making things up as they go." It is because death has become more of a private affair in this country, according to Barnard, that the meaning of a good death has been pulled toward the physical process of a patient dying in a bed. Some people might think that such a shift is wrong, but Barnard does not believe that it is incompatible with the spiritual concept of a good death, since it can give comfort to a person who is racked with pain.

–Mike Sajna n