Joe stood in the door way as the nurses gently but carefully strapped Carol, his wife of thirty years, into the bed. His gaze left the pale lined face and smooth hairless head of the woman he no longer recognized and slowly looked around the room at the hospice facility. It was warm, subtle flowers papered the walls and a nurse laid a cheerful hand-knit Afghan across the patient’s lower body. Carol squirmed against the constraints. A low whimper escaped her cracked lips followed by a barely coherent demand to be released. The nurse turned to Joe and motioned to the stuffed chair that sat next to the bed. "You can sit here if you'd like," she said, smiling warmly at him.

"No, I am not staying. She does not know me anymore. Just call me after she has gone. I'll be at home," he replied, his voice dry, the words thin. He looked toward the woman in the bed, but his eyes did not rest on her face. "I am leaving now," he said softly, turned and walked out of the room, never noticing the stunned look on the faces of the two nurses standing over the woman who did not acknowledge his exit. Joe walked down the hall toward the exit. He stopped and stood staring at the front door. He could not stay, yet he could not leave. Joe was a man torn between two cultures.

Joe and Carol were reservation raised American Indians. As cold as leaving his wife to die in the care of strangers may have seemed, he had been raised in a sheltered culture where a person’s spirit was the most tangible part of the human being. To him, when Carol’s advanced brain tumor changed her soft spoken manner into paranoia, when she no longer recognized him, she and her spirit were already gone. Joe explained that he felt he must leave because he did not know what else to do. In his youth, he recalled that when a nation member became ill, the community as a whole took part in rituals that guided them through the terminal patient’s death. However, they had left the reservation when Joe enlisted in the army. With their new lifestyle came exposure to new and foreign cultural rules. When his tour of duty was complete, the tribe leaders would not let them return to the reservation. Cut off from the cultural traditions of their heritage, they went through life, and death, in the confusion of cultural limbo.

Why Now?

Why does facing death make our culture so important to us? Why do we fall back on the traditions of a heritage or religion we may not have been that active in before? Why does a lack of cultural foundation make the rocky journey of bereavement that much harder to take? What is the power of culture? One possibility is that it gives people some sort of rules to follow during a time when they seem to have no control of what is going on. It gives them back some sense of order, of meaning. This unwritten list of beliefs and rituals can be a powerful tool for acceptance for the terminal patient and for the survivors. As a medical professional, sensitivity to a patient’s, and their families, cultural needs as they face a terminal prognosis has become a necessary element in the holistic care of the patient.

The Only Mistake Is Not To Ask

Cultural sensitivity in medicine is one of the latest buzz words. Yet its definition is at best evasive and its borders visually intangible. In this ever shrinking world, judging ethnicity by appearance can be deceiving. Ignoring it will cause a deficit in the holistic care of patients, particularly those facing a terminal diagnosis. Yet, the concept of culture is complex. It is an ever changing facet of an individual’s life that may evolve as an individual journeys through life. An individual's concept of culture is more often a guide then a hard rule. For those seeking to comprehend, admitting what you don't know is the beginning to understanding all you must face. To be sensitive to cultural needs you do not need to be an expert on all cultures, but you do need to be perceptive enough to know when to ask. It is as important not to assume cultural ethnicity as it is to be sensitive to its existence and its important role in treating patients.

Further complicating the issue of a patient’s cultural influences is that heritage does not predict culture. Even the strictest cultural rules of the past can give way to new interpretations offered by the environment we as individuals have grown up in. This is a growing phenomenon as world wide travel and migration cause individuals with a variety of ethnic backgrounds to grow up in cultures much different from their ancestors. Ethnic appearance can not be a predictor of culture. It is also important to be aware that the individual differences within each ethnic group can be as varied as the differences between ethnic groups.

In addition, there is the question of second generation populations that may have been born and raised in an environment much different from their parents. This situation can be particularly complex as new cultures may or may not be interwoven into a collage of beliefs that attempt to include the young and the old. It is unlikely that ethnic integration will bring about a complete melting-pot of cultural beliefs, but modern technology has made an impact on the way older traditions in medicine are viewed.

So there remains the one big question. How does a medical professional know if cultural issues are relevant to the care of their patient? There is only one way and that is to ask. This sounds all to obvious, all too simple. Yet many medical professionals are uncomfortable approaching this subject with their patients. This can be out of concern that they may offend. However, no question asked with respect is offensive. The key is to keep in mind that differences in cultures are purely of social origin. Ask with respect and your questions will be answered and your patient’s needs more fully met.

Different Views

Most people in America would agree that there is no one American way of grieving or of facing death. In the same light, there is no one Asian way, or Jewish, or Buddhist, or Muslim way either. So the purpose of offering the following cultural generalizations is not to categorize but to offer only a brief glimpse at the rich diversity that exists.

Japanese ancestor worship is a series of rituals performed by the survivors that can last between thirty to fifty years after a person has died. It is a highly structured protocol to facilitate the transformation, restructuring and reconciliation of the person who has died. The ritual’s goals are to direct the dead person’s spirit from its immediate association with the corpse, where it may be considered dangerous or potentially polluting, to a stage where it loses its individual identity and enters the realm of the ancestral spirits. In some cases a household altar may be set up where memorial tablets of the dead are kept. These altars are revered as a place where the deceased spirit may still reside with the family and be called upon for guidance through prayer.

Individuals of Chinese descent could turn to a combination of Confucianism and Taoism, and in some cases Buddhism is also woven in. One theme that is stressed is the family obligation to bury the dead and honor them with religious rites. White was traditionally worn by mourners to express their grief and in the case where the deceased was a very old person, bright colors may be worn to celebrate the longevity of the individual. Incense and ritual paper money may be burned to ensure the welfare of the deceased soul as they enter the next life. Mourners visiting the deceased’s home to offer condolences to the family may see boxes of tissue and a plate of wrapped candy left for them. To ward off bad luck to those that have come near death, each person leaving takes with them a wrapped candy that must be eaten and the wrapper discarded before they return to their own home.

Many of the traditional American Indian cultures stress the importance of their Indian nation over the individual and their sense of security and belonging stems from their relationship to the nation. Most believe that family and group take precedence over the individual and they are taught not to interfere with others and to observe rather than react impulsively. Harmony with nature is a central theme where the goal is to accept things as they are rather them attempt to control. Life is viewed as circular with no distinct beginning or ending.

Though it is generally acceptable to refer to all persons of African decent as Black, it is important to note that there are a variety of subcultures that may hold differing cultural beliefs. The color of skin can not determine if a person is of American, Jamaican, African, Aboriginal or other descent. As with any broad group of people, appearance can not be used as a predictor. Socio-cultural influence from ancestral origins may combine to shape the individual Black person’s values regarding death. Often there is a strong personal identification to an ancestral heritage and the only way to understand the patients unique needs is to ask.

These, of course, are just a small sample of the cultural collage we live in. Culture is affected by our heritage, our economic and educational level, our religion, our beliefs and our prayers. Each person has their own unique views and needs. However, throughout the various cultural ways of dealing with death is a common thread. It is a respect for the individual who is dying. Though the protocols vary, the central theme is a means of acceptance for the patient and closure for the survivors. Understanding these emotional needs for traditions is an important facet in treating terminal patients.

Cultural Competency Starts With Looking Within

How can medical professionals prepare themselves for dealing with a terminal patient’s unique cultural needs? The challenge is two-fold. Before you can begin to discuss a dying patient’s cultural end of life needs, you must be able to openly discuss their death with them. This is perhaps the hardest job a doctor has to face. All the years of studying to save a human’s life, all the advances in technology, can not erase the inevitable fact that life does end. Medical professionals must come to terms with death as a natural stage of life and not a failure on their part. With an acceptance of death as a part of life, it is easier to see how the way we live, our culture, plays a part in the manner in which we die. As their culture directed the way a patient lived, it can not be ignored at the time of their death. It can not be pushed aside by differing views of what is the "right" way to approach life and death. There is only one right way and that is the one that fits the views of the person facing death.

To accept this, it is important that you understand your own experiences, attitudes and expectations towards death. Taking the time to do a personal survey of your own unique attitudes can help you listen to other’s needs without judgment. Witness a baby being born, and a person dying. That is life. When you accept that you will be treating humans who are mortal, that life has a beginning and an end, you will treat for quality of life, and incorporating cultural protocols into the patient’s life and death becomes an integral part of the medical treatment you offer.

Often there is much to be learned simply by watching and listening. As a terminal patient approaches death it may be difficult for them to express their beliefs or needs. There could be conflicting information from relatives as well. Listening to how they speak of death, the words they choose, such as dying versus passing on or passing away, can give some indication to a patient's beliefs. Be aware that facing death may create conversions of religion, or grasping at family roots to make some sense of it all.

As mentioned before, it is not necessary to memorize the protocol for dying for all cultures. But, it might be helpful to familiarize yourself with some of the general beliefs of any ethnic groups that dominate your practice area. Be familiar with the appropriate language used to describe their culture and the manner in which they refer to the dead. However, always be aware that this type of general information can only be used as a guide to help you gather the necessary specifics. Know where to look for resources as well as what local services are available in your area to assist patients with cultural needs.

It would be far beyond the training of a doctor to understand every cultural tradition that you will encounter in this ever shrinking world. However, awareness and respect are in your means. Even a brief review of the variety of cultural family structures and protocols of communication will enable you to better recognize the necessity to inquire about cultural needs throughout medical treatment. No person is defined by the pieces that make up their lives but by an interweaving of the world in which they live. Each patient needs to be seen not just as your patient, but as an individual.

Medical personnel can sometimes be so involved in the process of fighting off death that they don't see the spiritual transformation of the patient, the need to fall back on cultural beliefs. Begin by coming to terms with your own beliefs and fears of death, your own mortality. How you feel about it will be reflected in how you work with your patients. You can not fear it, nor can you be cold to it either. By respecting and utilizing the protocols of culture you can help yourself and your patients see this as a natural stage in their life and the lives of their family.

Quality of life is a basic human desire that spans all cultures. It is the result of living well, with the freedom to live as the individual you are and express the beliefs of your soul. It is the desire driving the creation of all cultures and nowhere is it more important than at the end of life.