Culturally Appropriate End-of-Life Care

2017 - 4 August – Diversity
Donna M. Wilson, RN, PhD
Read about cultural considerations in end-of-life-care decisions.

A great deal of change has occurred over the last quarter century in relation to the provision of culturally appropriate end-of-life care in critical care units. Although physicians, nurses, and other healthcare professionals have no doubt noticed cultural differences among dying patients for centuries, 1995 marks the publication of one of the first articles on the importance of recognizing cultural differences when providing care for dying patients.1

One year later, the first research article documenting the existence of culturally diverse end-of-life decisions appeared.2 The author encouraged the use of four ethical principles in clinical decisions involving dying persons.2 These four principles were outlined and described by Beauchamp and Childress in 1979.3 Today, the ethical principles of autonomy, nonmaleficence, justice, and beneficence are widely used to address issues arising from differences in ethical, moral, and other values, including religious or culturally based ones.4

After this foundation in ethics and patient-centered care, research on culture in the field of critical care quickly followed. Much of this research has focused on death and dying, as the prevention of avoidable deaths was the impetus for the widespread initiation of critical care units in the 1970s. Among many noteworthy early studies was an investigation by Hammerman et al in 1997 that revealed that “maternal ethnocultural backgrounds and philosophical principles more profoundly influenced medical ethical decision-making than did specific personal life experiences.”5 In this study, pregnant women with diverse backgrounds and life experiences were presented with hypothetical scenarios in which treatment decisions about critically ill neonates were needed. Not surprisingly, given the subjects and study focus, they were largely in favor of maximal medical treatment to preserve life at all costs.5 This study occurred two decades after the 1976 Supreme Court decision allowing life support, in the form of a ventlator, to be withdrawn in the groundbreaking case of Karen Ann Quinlan.

Life support at all costs was the understandably prevailing feature of care efforts in critical care units as life-supporting technologies and knowledge improved. One of the most important end-of-life developments in critical care has therefore been the acceptance of inevitable death, starting with calls for more careful rationing of critical care resources. In 1997, Lanken et al cautioned that “until an open consensus develops in U.S. society about how to allocate scarce healthcare resources, the delivery of ICU care will continue to be at risk of covert, de facto rationing based on ability to pay, race, and other nonmedical personal characteristics.”6

The subsequent development of illness acuity measurement tools and outcomes research to indicate when death is inevitable has been rapid and is still ongoing. Regardless of this evidence-based and rational prognostic decision-making progress, one continuing end-of-life issue is that patients have for many years either been transferred out of critical care units to die elsewhere or kept on the unit until the withdrawal of life-supporting technologies has allowed death to occur.7 This quandary over place of death remains current today, with the cultural background of involved people a major factor in whether and how this care setting transition is accomplished. Ultimately, the place of death now largely depends on cultural conventions, norms, expectations, and circumstances. These circumstances include the unique relationships that have come to exist among the people involved, with most critical care relationships formed rapidly and under considerable duress.8

It is also important to recognize continuing interest since the 1990s on the related topics of culture, race, and ethnicity. By 2008, reviews of research articles on cultural diversity in relation to end-of-life care began to appear.9 Books on cultural diversity also highlighted unique features of distinct cultural groups.10 It is now well understood that major decision-making processes and end-of-life care differences can exist based on the patient’s culture and also potentially the family’s culture, as well as differences based on the patient’s racial or ethnic group. 

The terms culture, race, and ethnicity are often used interchangeably but there are important distinctions. Culture is “the habits, beliefs, and traditions of a particular people, place, or time” as well as “the characteristic features of everyday existence (such as diversions or a way of life) shared by people in a place or time.”11 An understanding of culture must also include awareness of its relative permanence, as illustrated by this definition: “the integrated pattern of human knowledge, belief, and behavior that depends upon the capacity for learning and transmitting knowledge to succeeding generations.”11

Culture is not reserved for groups of people, but also for organizations and professions,12 as illustrated by these two definitions of culture: “the set of shared attitudes, values, goals, and practices that characterizes an institution or organization” and “the set of values, conventions, or social practices associated with a particular field, activity, or societal characteristic.”11 The quandary over death occurring in critical care units or elsewhere after transfer out may therefore not be considered only through the cultural viewpoints of the individuals involved but also through the culture of the critical care unit and the cultural conventions that have come to exist in the field of critical care. Thankfully, given this cultural cornucopia, most healthcare providers and members of the public consider a good death to be of prime importance once it is apparent that life cannot or should not reasonably be extended. 

Race is more narrowly understood as “a group of persons related by common descent or heredity” and more broadly considered “a socially constructed category of identification based on physical characteristics, ancestry, historical affiliation, or shared culture.”13 Similarly, ethnic group is understood to be a subpopulation or group of people “classed according to common racial, national, tribal, religious, linguistic, or cultural origin or background.”14 As such, considerable overlap exists across the concepts of culture, race, and ethnic group. Regardless, it is important to realize that subtle or, at times, stark differences along cultural, racial, ethnic, and religious group lines are common and should be expected. Moreover, most people today have multiple cultural, racial, ethnic, and religious backgrounds, and thus a complex set of influences on their views and behaviors. 
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Take, for instance, a young person born in a developed country to immigrants who attended public schools and universities in the adoptive country. These educational organizations are highly multicultural, in keeping with the citizen base of developed countries now and also due to  extensive globalization. While the parents likely practice cultural and racial or ethnic customs dating from their time in the country of origin, even if these customs have since changed, their child has been exposed to multiple cultural influences, including the dominant culture of the adoptive country and the dominant culture of science and evidencebased decision-making in developed countries. Moreover, while the parents will likely have continued to practice the religion of their ancestors, children raised in modern pluralistic countries are more likely to be secular or not bound to a single religion. If the child becomes critically ill, all of these cultural, racial, ethnic, and religious influences will have a bearing on the decisions made to sustain life or allow death to occur. 

In conclusion, there are major differences in cultural, racial, ethnic, and religious norms and expectations related to critical care end-of-life matters, particularly the withdrawal of life support and place of death. Heightened awareness of multicultural diversity and plural culture complexity is essential, as well as actions that value and facilitate the expression of this diversity. To not do this is to risk life-and-death stalemates such as the high-profile Karen Ann Quinlan case. 

References
1. Koenig BA, Gates-Williams J. Understanding cultural differences in caring for dying patients. West J Med. 1995 Sep;163(3):244-249.
2. Davis A. Ethics and ethnicity: end-of-life decisions in four ethnic groups of cancer patients. Med Law. 1996;15(3):429-432. 
3. Beauchamp TL, Childress JF. Principles of Biomedical Ethics. New York, NY: Oxford University Press; 1979.
4. Mandal J, Acharya S, Parija SC. Ethics in human research. Trop Parasitol. 2011 Jan;1(1):2-3.
5. Hammerman C, Kornbluth E, Lavie O, Zadka P, Aboulafia Y, Eidelman AI. Decision-making in the critically ill neonate: cultural background v. individual life experiences. J Med Ethics. 1997 Jun;23(3):164-169.
6. Lanken PN, Terry PB, Osborne ML. Ethics of allocating intensive care unit resources. New Horiz. 1997 Feb;5(1):38-50.
7. Aslakson R, Cheng J, Vollenweider D, Galusca D, Smith TJ, Pronovost PJ. Evidence-based palliative care in the intensive care unit: a systematic review of interventions. J Palliat Med. 2014 Feb;17(2):219-235. 
8. Truog RD, Campbell ML, Curtis JR, et al; American Academy of Critical Care Medicine. Recommendations for end-of-life care in the intensive care unit: a consensus statement by the American College [corrected] of Critical Care Medicine. Crit Care Med. 2008 Mar;36(3):953-963.
9. Thomas R, Wilson DM, Justice C, Birch S, Sheps S. A literature review of preferences for end-of-life care in developed countries by individuals with different cultural affiliations and ethnicity. J Hosp Palliat Nurs. 2008 May/Jun;10(3):142-161.
10. Wilson DM, Sheps S, Thomas R, Brown M. Seeking an understanding of Aboriginal culture: systematic review of Aboriginal end-of-life care needs and preferences. In Waugh EH, Szafran O, Crutcher RA, eds. At the Interface of Culture and Medicine. Edmonton: University of Alberta Press; 2011.
11. Merriam-Webster. Culture. https://www.merriam-webster.com/dictionary/culture. Accessed June 25, 2017.
12. Cable-Williams B, Wilson DM. Dying and death within the culture of long-term care facilities in Canada. Int J Older People Nurs. 2017 Mar;12(1). 
13. Dictionary.com. Race. http://www.dictionary.com/browse/race. Accessed June 25, 2017.
14. Merriam-Webster. Ethnic. https://www.merriam-webster.com/dictionary/ethnic. Accessed June 25, 2017.