In this age of increased social diversity the cultural aspects of end-of-life care have become increasingly important in the nursing profession. This importance is however complicated by technology and the cultural problematics of extended life care through artificial means. In the book Cultural Issues in End-of-Life Decision Making (Braun, K, Pietsch, J.H. Blanchette, P. 1999) the crucial point is made that "providing cultural and spiritually sensitive care requires that nurses, physicians, social workers and others know and understand the implications of family members' beliefs about life and death, supportive rituals and other activities." (Review: cultural Issues in End-of-Life Decision Making, 2004)
This book underlines the fact that cultural issues in end-of-life care have essential implications for nursing -- especially in that professional nurses should have knowledge or be cognizant of the wider cultural and social context or milieu in which they work. This also implies the development of a particular sensitivity to the often complex culture context of end-of-life patients. "Culture shapes one's taboos about death and preferences with regard to terminal illness." (ibid) The study stresses that issues such as life support and other ethical areas depend largely on the cultural context of the patient.
Another study also emphasizes this point. "Advanced modern societies are characterized by cultural diversity and it is sometimes difficult for health professionals to know how to provide appropriate and culturally sensitive end-of-life care to patients in multi-ethnic communities." (Field, David, 2004) This study on multi-ethnic settings in Canada and the U.S.A. observes that
... most contemporary literature in bioethics stresses the importance of truth telling, the principles of autonomy and patient choice and the value of advanced care planning. However, these principles run counter to beliefs and values of many cultural groups in these societies. (ibid)
These are aspects that the nursing staff needs to be aware of in order to provide the most effective qualitative assistance to the patient.
End-of life care nursing requirements are in themselves complex and an area in which more research is required. The research in palliative care has over the last decade focused on a holistic approach to the issue. This refers to care strategies that include the wider context of the patient's life; such as social, psychological and spiritual needs. More recently research in these areas have been extended to include an even wider range of contextual issues and a greater focus on the sensitive dynamics that culture plays in this form of nursing care.
'Since 2000, papers on this topic have taken a wider view, looking at end-of-life care for older people, technology and death policy, bioethics, and the use of do-not-resuscitate orders." (Field, David 2004) These comments refer to a central issue that impacts on cultural aspects in the care of these patients; namely, advances in modern technology.
Technology now allows patients to live longer in artificial conditions which can create problems with regard to cultural norms and ethics. In a study entitled Cultural influences on end-of-life decision-making by Frances C. Jackson, Stephanie Schim, and Sonia Duffy, the author's state:
The growth of sophisticated life-sustaining medical technology has resulted in greater attention to medical care at the end-of-life (EOL). These issues are particularly relevant for a growing number of adults in the United States and their family members who are faced with increasingly complex choices related to initiating, withholding, and terminating medical treatment.
(Frances C. Jackson, Stephanie Schim, and Sonia Duffy)
The authors continue to state that within the modern hospital environment, culture has become an extremely significant factor in improving palliative care. They also point out that disparities in cultural backgrounds between patient and health care workers may become a problematic area unless more attention is paid to cultural aspects of end-of-life care.
Many of these individuals and families will be people of color, as it is projected that by the third decade of the twenty-first century, people of color will outnumber European-Americans 51% to 49% (Fitzgerald, 1992). These individuals will receive advice on EOL decisions from a workforce that may be largely made up of European-Americans. How this advice is given and received will be largely influenced by the culture of the recipient of care, the culture of the provider of care, and the culture of the institution where the care is being received.
The authors also state that an awareness of cultural needs and requirements within the hospital situation is a means of reducing any potential conflict areas. (ibid) The study is informative and opens up areas of concern for professional nurses working in this area. For example,
One major area addressed was to ascertain under what conditions African-Americans would utilize hospice services. Some participants indicated they would be reluctant to use hospice services because this would mean giving up hope. Statements such as, "Black people don't believe in giving up" and "I would not want to give up treatment, but the rest sounds nice" are certainly culturally influenced.
Another example of the way that cultural insight can impact on the understanding of the cultural complexity that underlies end-of-life care is the following:
Several focus group participants stated that they would not be able to sleep in the bed where their loved one had died. If indeed this is an issue for African-Americans, then this ethnic group may not view death at home as preferable to dying in an institution. (ibid)
A further telling example from the study reveals the implications of cultural understanding in these situations.
Black people spend so much energy trying to live; they can't take time worrying about dying. Overall, several individuals in the group expressed the thought that Black people don't prepare for death. "We don't do wills, pre-pay for our funerals, make plans to die." If discussing the subject of death is an avoided issue for African-Americans, this has tremendous implications for physicians and other health care providers faced with the task of discussing termination of life support and withholding extraordinary measures to sustain life with families of terminally ill patients. (ibid)
This study and others focuses attention on the important aspect of communication. This is a crucial area for nursing staff and one which requires further research. In the study by the VA Glahs Nursing Research Council on Culture and Ethnicity, areas of concern are referred to with regard to communication with patients of different cultural groups.
Medical jargon may be confusing, unclear, or misunderstood (Tulsky, Fischer, Rose, & Arnold, 1998). Physicians typically talk too briefly about end-of-life options and may not know to demonstrate respect for a patient's culture or values. Translations and culturally sensitive written information in native languages are lacking (Hern et al., 1998). Speaking another language or having limited English skills complicates discussions or asking for help (Phipps, True & Pomerantz, 2000).
(Research You Can Use To Improve Care)
There are an increasing number of studies, reports and books that are evolving new ways to improve assistance to end-of-life patients from a cultural perspective. One of these is Ethnic variations in dying, death and grief: Diversity in universality (Irish, D.P., Lundquist, K.F., & Nelsen, V.J. 1993)
A further area that has implications for the nursing profession and which is still in its infancy in terms of research, is the understanding of spiritual and religious issues in end-of-life care. This obviously has a strong cultural component. The integration of an understanding of cultural religious and spiritual aspects has proved to be important for nurses in dealing with these patients, as the study by David Field found; " ... The nurses ... interviewed had 'integrated their spirituality' into their nursing role and that the spiritual dimension 'infiltrated all dimensions of (their) nursing care'. (Field, David, 2004) In this regard an important study is Richard Golsworthy and Adrian Coyle's discussion about spiritual belief and the search for meaning in the face of death. (GOLSWORTHY, R. & COYLE, A. (1999)
Recommendations for further research are made in almost every serious study of this subject. The following extract stresses that more directed and specific research on localized areas of cultural input into the end-of-life situation needs to be addressed.
... we need to develop a research agenda that will address how end-of-life decision-making is shaped within a particular cultural context. This research will need to be carefully crafted in order to avoid the pitfalls of simplistic and deterministic use of racial, ethnic, or cultural categories. The research needs to be constructed with an eye toward the complexity of power dynamics within the social setting of hospital, clinic, or nursing home.
(Integrative Workshop on End-of-Life Research)
In conclusion, the implications of cultural understanding in end-of-life care have serious research and learning implications for the nursing profession. In this complex and delicate situation the professional nurse has to be aware of the ramifications of the cultural norms and rituals that pertain to the patient and his or her family. It is only through an awareness of the total context that the nurse can provide adequate care and assistance. The…