Introduction

“An elderly Hindu in a British hospital was found lying on the floor, so, thinking that he had fallen out of bed, the nurses placed him back. Shortly afterwards he was found on the floor again. He could not speak English to explain that he thought he was dying and wanted to die on the floor where he would be near Mother Earth, so that his soul could leave more freely than in a bed. Like many Hindus, he had a clear model of how he should die, yet he died alone, before his family could be summoned to perform the final rituals.”

Shirley Firth, Dying, Death and Bereavement in a British Hindu Community

The probability of any two random persons in America being of the same ethnicity is 0.49; 58% of medical critical care fellows are graduates of foreign medical schools. These two facts are enough to explain why a discussion of cross-cultural medicine should be placed at the front of a critical care text. Diversity and cultural sensitivity are concepts which are much in the forefront of recent conversations regarding medicine. However, much of what is done with these concepts and realties is simplistic, and many of the tools purporting to help cultural sensitivity do little more than reinforce prejudgment and stereotypes.

Practitioners struggling to deal with the bewildering array of ethnicities, religions and cultures with which they are confronted and must interact could be forgiven for being overwhelmed. Learning the nuances of even one culture takes years of study. When that culture is confronted with an entrenched biomedical culture the complications multiply. It is therefore not possible to state in detail the proper way to approach any particular type of patient or family. The best that can be done is to learn what some of the fundamental issues are, and how to sensibly and practically approach them in the daily care of patients in the intensive care unit. Although there is some evidence of higher satisfaction when the patient and provider are similar in demographics, matching patients and physicians by demographics is neither reasonable nor desirable.

A look at the basic language and terms involved can illustrate the complexity of the situation and begin a process of coming to terms with this challenge. Culture has been described in many ways, but for purposes of simplicity can be defined as a system of beliefs and a learned and ingrained worldview that goes beyond surface belief to patterns of core values and meaning.

Culture should not be confused with either ethnicity or race. Race is a term which has no biological validity. The concept of race as a valid biological categorization has been refuted by the American Anthropological Association, and in general the term has no scientific meaning. Ethnicity refers to the ethnic background into which a person was born. It is generally similar to culture but can be very different (as in cross-ethnic adoption); although often used as a marker for culture, “ethnicity” and “culture” are not synonymous and cannot simply be used as such.

Acculturation modifies the effects of culture. This has long been recognized by immigrants themselves. The Japanese in America classify themselves as Issei, Nisei, Sansei, and Yonsei for successive generations after immigration. This is a tacit recognition that worldview and interaction with the dominant culture changes with increasing exposure to, and assimilation of pieces of, that culture. The rate of acculturation varies tremendously among immigrants, in part due to the degree to which cultural continuity is maintained in a specific locale as opposed to integration into the larger community.

A textbook discussion of specific issues and table of possible solutions does not remove the complexity of cultural diversity. What must be appreciated is the enormous variation in human belief and desires regarding health, illness, and dying. A realization and admission of lack of knowledge and beliefs is the first step. The one specific piece of information regarding your patient from whatever culture, ethnicity, nationality and religion that can be given is this: You do not know what they believe until you ask them, and that asking opens a dialogue of extraordinary value to all concerned.

Communication

The ideal person to act as an interpreter in these situations is a cultural interpreter. This person can not only translate the words and conversation but interpret the appropriate social customs and mores and help in dealing with areas of cultural incongruity by interpreting the worldview and resultant desire for care on each side of the physician/patient relationship. Unfortunately, cultural interpreters are uncommon and difficult—if not impossible—to obtain for all cultures that an intensivist may come into contact with. Many persons who act as interpreters can, although not trained, act as a valuable cultural resource. This, however, requires the practitioner to understand their limitations and the potential problems, and to ask the interpreter the proper questions about approach to the family and patient, and manner of dealing with them. A true interpreter, as opposed to a translator, will perform some of these tasks. They may say, for example, that in a particular culture the phrase “we' ll think about it” generally means “we have decided to proceed but must wait a respectable period of time.” That is the difference between a strict translator of words and an interpreter of meaning. An interpreter is the least that is required for true understanding; but again, this is not possible in many hospitals and in many situations, e.g., in the middle of the night where decisions are crucial and the abilities and resources at hand must be used. All too often a family member is recruited to translate. To make matters worse this is often a minor who knows English by virtue of school. Only under extreme circumstances should a family member be used to translate. Conscious and unconscious filtering are common in this situation. Almost as bad, a person who is available but untrained in either communication skills or medical interpreting is drafted into service. Hospitals have lists of translators but these persons have generally received little or no formal training. If these persons must be used (and realistically it cannot be avoided), training should be mandatory. It should not be forgotten, however, as with any other tool in the ICU, that using a strict translator is not using the optimal resource and obtaining the optimal information, and that inaccurate information may well be transmitted.

Ethics

Many of the precepts of western biomedical ethics which are taken as undeniable truths in much of American medicine are simply cultural constructs which are subject to the same intercultural variability as all other cultural constructs. Three of these of primary importance in the ICU are autonomy, truth-telling, and beneficence.

Autonomy, as it regards decision making, becomes an issue as patients are admitted to the ICU and end-of-life discussions are begun. They often become a moot point by the time decisions occur concerning the pursuit of very aggressive care or withdrawal of care, as the patient is no longer capacitated for medical decision making. However, it must be noted from the beginning of the patient' s admission that multiple models of decision making are possible. In many cultures, the concept that a patient would have the autonomy to bankrupt their family and put enormous strains on their community without input from those larger entities would simply be unacceptable. Therefore, it is important to identify the mode of family communication and the decision-making processes of the family, as much as possible. Simply asking the family who will make the decisions and how is important. Truth-telling enters into the autonomy equation. Many cultures consider it potentially harmful to tell a patient they have a terminal illness, because telling a person they are dying may make that likelihood a certainty.

What is therefore needed at times is a hybrid. We are unwilling to give up our ethics as we feel we must practice them, and yet we are ethically obliged to respect the wishes of the patient. At times we have to respect the autonomy of a patient to make the decision to not be autonomous. Discussions with the patient regarding whom they feel should make the decisions, whether it should be them or another member of the family, are necessary in many cultural contexts. In addition, along with that discussion, a discussion concerning whether the patient wants to know their diagnosis and prognosis is important. It would seem, if autonomy is to be respected fully, that a patient should have the right to say “I do not want to know and please give my family the medical information and allow them to make the decisions.” It is sometimes helpful to have a discussion with patients who are ambiguous about full knowledge in a third person way. “What would you think about a person who had this diagnosis or who had this happening to them or was going to have this happen to them?” “How do you feel this type of situation should be handled?” Those kinds of discussions with some degree of individual dissociation can be helpful in allowing a patient of any culture to discuss subjects that would otherwise not be acceptable, or emotionally or intellectually possible, topics of discussion.

Family and Visitation

Intensive care units have traditionally had very restrictive visitation policies. These have, in general, become less stringent in recent years. They still clash with the feeling of many families regarding family presence at a sick bed. In many cultures it is regarded as a familial obligation for at least one member of the family to be present at the sick bed of a gravely ill person at all times. Although this is at times inconvenient for the medical staff, it is only rarely contraindicated and at these times having a family member wait outside the room is generally acceptable for all. Visitation by children and the presence of children in the rooms of the gravely ill also varies. Whether children are capable of handling visitation in the ICU is a decision best left to those family members who know them best. Their presence should be allowed unless there is a significant contraindication, particularly in end-of-life situations. In many cultures it is seen as quite normal to expose children to all aspects of life and death, and their exclusion leads to a sense of lacking a full family presence. This is particularly true in withdrawal of care situations.

Pain Control

The question of pain control has been addressed in several recent discussions regarding end-of-life care. It is generally taken as a tenet of end-of-life care that pain should be abolished if possible and maximally controlled if removal of pain is not possible. There are beliefs, particularly religious beliefs, regarding the redemptive value of pain. This exists in several religious traditions including the Catholic and Islamic traditions. It should not, however, be presumed that a member of these religions wishes to suffer, or that members of other religions do not. The presence of multiple meanings of pain simply needs to be realized. Our beliefs must be checked with the those of the patient, and their wishes followed.

Religion

Religion is often closely tied to culture and ethnicity. In many tribal societies, prior to western contact, religion was not defined as separate from the rest of life. Most commonly, however, we are dealing with patients with specific religious beliefs. Virtually all hospitals have chaplains or ministers of specific denominations. It is best to make an institutional relationship with religious leaders of any denomination with which significant contact is likely given the population of intensive care patients. In general, a chaplain trained in hospital chaplaincy can deal with most contingencies in helping the family cope. There are, however, specific rites and rituals which do require the presence of a practitioner with knowledge and credentials of the religion in question.

Treatises on specific religious beliefs regarding health and end-of-life issues can be found, but given the extraordinary proliferation of subgroups within any religion, generalities should be avoided and specific guidance sought from the family and their spiritual counselor.

End-of-Life and Withdrawal of Care

Death is where the effects of culture impact most strongly in the ICU. Biomedicine often views death as a simple physiologic concept which all staff know can be confirmed by a rapid exam. It is, in reality, a complex and mutable concept. As illness is culturally defined, even death is subject to cultural definition. There are persons in the mainstream of American culture who believe death is the final event of a physical body with nothing further. There are those who know with equal assurance that there is a soul which lives on after the body and goes to one of a number of different fates. To the individuals involved these are less beliefs than truths and ways of defining existence. It is important to realize that this same tremendous diversity of ethical certainty and potential incompatibility of beliefs occurs in many situations. Regarding death, there has also been a long tradition in several cultures of regarding persons as being in the category of the dead before what we would consider physiologic death. Lest this seem ridiculous, it is worth remembering that within the last few decades biomedicine has changed the definition of death to now include persons whose brain function has irreversibly ceased. The full import of this change in a definition of death which has existed for the entire history of mankind can be felt at times when dealing with families who have not kept up with the pace of our changing medical beliefs, or whose faith does not allow them to acknowledge brain death. There are places in America and throughout the world where religion determines whether a person is deemed dead or not—a remarkable example of the influence of culture and religion on what we often believe are definitive medical concepts.

The events surrounding end-of-life are of particular interest to clinicians and researchers today. We should in no way believe, however, that we have created the concepts of the dying, the near-dead, and persons who are for most purposes dead although physiologically alive. Each of those concepts exists in multiple cultures throughout the world and has for millennia. It would be extreme hubris on our part to believe that we have somehow discovered dying and can now somehow manage it. We must learn from the billions of human beings who have already faced this situation with their families and communities. To do otherwise would be a disservice to our humanity.

Trust

Patients and families from traditionally underprivileged ethnicities and poorer socioeconomic classes may have issues with trust in the dominant biomedical structure. The legacy of grievous breaches of ethics, and even currently documented inequality in care, leave a cloud of suspicion over recommendations to withdraw care in some patients. Families, with some historical justification, have suspicions of the medical establishment and the motives for recommendations which are made. It is also a concern among some minority patients and families that recommendations, particularly regarding limitation of expensive technology or withdrawal of care, are potentially being made for economic and not medical reasons. These are very difficult situations to resolve once mistrust has arisen. Clear communication from the beginning can help avoid such situations. Once a situation arises, involvement of medical personal of similar cultural background and the involvement of community resources in the dialogue can be helpful.

Several articles have examined some of the specific issues addressed here in more depth and have resources and additional suggestions for approaches to cross-cultural care.

What we must focus on when faced with a culture and belief system different than our own is attempting to understand how that person or persons knows the world. We must ask and listen to their answers regarding how they know disease, life and death. We must learn how to discern what is important to our patients and families, not try to focus on any specific belief of any group. It is impossible to know all of the answers. The best we can hope for is knowing what questions to ask.

• V. Theodore Barnett, MD

• Division of Pulmonary and Critical Care Medicine

• Medical College of Wisconsin

• Milwaukee, Wisconsin