Culturally-Sensitive Decision Making in End-of-Life Care

Introduction to Cultural Considerations in End-of-Life Care

 Fred A. Kobylarz,  MD, MPH Assistant Director of Family Practice and Assistant Professor of Family Medicine at UMDNJ – Robert Wood Johnson Medical School, New Brunswick, NJ, opened the symposium with statistics on minority groups among the elderly in the United States. Presently, over 16% of American older adults belong to ethnic minority groups, with an increase of 217% projected for the future. Hispanic-Americans are predicted to increase by 320%; African-Americans by 130%; Asian-Pacific Islanders by 295%; and American-Indian and Alaskan-Native people by 147%. Advances in technology have resulted in dramatic changes in health care since the turn of the century, as the average age of death went from 46 years then to 78 today. “Medicine—not culture, religion, or family—has become the dominant framework for understanding old age and death,” noted Dr. Kobylarz. In addressing end-of-life issues and making decisions, cultural sensitivity has become a growing need. The purpose of this symposium was to underline the importance of providing culturally-sensitive decision making in end-of-life care to improve patient outcomes and the well-being of their families. Summaries of two selected presentations on the subject are provided below.

Understanding Culturally Appropriate Protocols in End of Life Care

Gema G. Hernandez, DPA, former Secretary of the Department of Elder Affairs in Florida, and currently a private consultant to health care organizations and hospitals, presented critically important information on implementing culturally competent programs in end-of-life care. Cultural diversity has become a reality, and often the physician suffers a cultural shock upon encountering a patient from a different ethnic and/or religious background who holds beliefs that are fundamentally different from his or her own. According to Dr. Hernandez, this shock creates grave barriers in the delivery of medical services to the patient, often leading to misdiagnosis and decreased patient compliance with treatment and/or prevention programs. Instituting culturally competent programs in practice is a way to begin dismantling these barriers. “In order for the physician or clinical social worker to be effective, cultural shock needs to be eliminated,” remarked Dr. Hernandez. Information that causes cultural shock is unsettling because it represents a viewpoint that does not make sense to the recipient, and the tendency is to block out such information. As a result, information that may be critical to the patient’s well-being might be disregarded. “Our role as clinicians is to facilitate healing and ultimate outcomes, but on the basis of our patients’ and their family members’ definitions of these terms, and not on our own,” pointed out Dr. Hernandez. “We need to understand that in every culture, health, illness, death, caring, and healing are defined differently.”

A complaint that is frequently voiced by physicians is that patients do not follow protocols. Dr. Hernandez suggested that perhaps physicians are not always listening when patients give them clear indications that they are not willing to follow a particular treatment regimen: “We don’t want to listen because we have already decided on this treatment—‘I’m the doctor.’” Communication with the patient may involve a language barrier that can create misunderstandings with dire consequences. Dr. Hernandez stressed the importance of never resorting to the patient’s family member for translation. She pointed out that such translation has inherent bias and shortcomings. Alternatively, the speaker urged the audience to hire the services of a professional interpreter to guarantee complete, objective translation of the patient–doctor dialogue. Regarding financial cost of this alternative, the speaker reminded listeners of the significant expense of medical errors. Once communication is linguistically viable, the physician should ensure that the information being given to the patient and his or her family members is culturally appropriate. “You follow, listen, and they [the patients] will give you a clue of what they are able to handle culturally,” advised Dr. Hernandez. She urged physicians to be flexible and to adapt the style of communication to the individual patient based on his or her needs. A culturally competent program can be implemented in a facility only if all of its staff receive the appropriate training. In the managed care system, one of the challenges of instituting cultural competence is the limit on the physician’s time with the patient. It is therefore essential to empower all staff, to pass the power of  the physician onto these individuals. “The first step in developing a culturally competent system is you—the physician, the doctor, the clinician, the researcher—you, need to understand your value system,” said Dr. Hernandez.

Having analyzed one’s own values, legislation, protocols, and all-intending consequence of public policy can be interpreted in that context. Congruency, which Dr. Hernandez referred to as “internal,” must be established between the values of the third-party payer, the government, the legislation, and the health care facility. The final step in instituting culturally competent care is extending internal congruence to the “external environment,” which in this context is the individual needs of the patient.

Grieving and Bereavement in End-of-Life Care

Liz Hurwitz, CSW, the coordinator of bereavement services at the Hertzberg Palliative Care Institute, Mount Sinai Hospital, New York, NY, began her presentation with a story of a Chinese servant who asked his American employer for time off to attend a cousin’s funeral. “The employer asked the man how soon he thought his uncle would eat the bowl of rice that the servant  was going to leave at the grave sight.” His response was: Well, about the same time your aunt who died last week smells the flowers you placed on her grave.’”  While the experience of losing a loved one is universal, the way people grieve and how they express their bereavement varies according to ethnicity, religion, culture, age, gender, and personality; and the number of permutations in the expression of grief is infinite. “There is no right or wrong way to grieve,” asserted Dr. Hurwitz. Grief is a process, not an event, and as a process, it does not have a linear progression. It does, however, have certain basic components. One is accepting that the deceased is no longer physically present in current time and space, and that, of course, involves pain and suffering.

Therapy for the grieved is often focused on easing the emotional burden of loss. However, while this is generally a rightful focus, in grief, pain and suffering is inevitable, and it is important that the person experiences the loss in the way that best helps him or her comprehend it. Once the realization sets in that the deceased is physically gone, the bereaved must make adjustments to life without that person. This means “allowing the deceased to reenter your life as a person who, although no longer present as before, still has a tremendous impact on who you are,” explained Ms. Hurwitz. At this point or at some point, one begins to look forward again, to see meaning in the continuation of his or her own life. “And that’s the good news about grief,” said the presenter. The term “complicated grief,” or “pathological grief,” also known as “pathological bereavement,” is used to refer to grief that, as a process, gets stunted when the bereaved does not come to accept or realize the loss. Such grief continues with the same intensity, and its consistency signals a problem. A grief counselor must determine if a person’s grief is in line with himself or herself as an individual or if it falls into the category of pathologic or complicated in nature.

The goal in grief counseling is to give comfort to the bereaved. “You need to have a basic understanding of the culture of origin,” advised Ms. Hurwitz.  For example, Mediterranean women traditionally wear black clothing for the remainder of their lives following a husband’s death. Should these women be approached with a suggestion to wear a flowery dress that might make them feel better? “Probably not,” offered the speaker. Neither might there be cause for concern at the sometimes dramatic displays of grief at the time of death by women in the Puerto Rican culture, or at the stoical manner in which Southeast Asians characteristically handle the loss of a loved one. However, it is important to avoid stereotyping and to assess each situation individually. That begins with self-awareness of the counselor, who, without a sense of his or her own personal perspective, can hardly be expected to recognize and analyze the patient’s perspective.

Ms. Hurwitz proceeded to make suggestions on the types of questions that a caregiver can put before the bereaved in order to get insight into his or her particular case: What is the acceptable level of emotional expression at such a time? What are the beliefs about afterlife? What are the gender rules on handling death? Are certain deaths particularly stigmatized, such as suicide? What are the rituals at the time of death? “So what is useful in working with grievers from different cultures?” asked the speaker. To summarize, “self-awareness is first and foremost.” Some knowledge of the patient’s culture is important. “It is very important to try and be open and stretch our comfort limits…” added Ms. Hurwitz, because, “you might have gotten the right culture and the right gender, and the right everything else, and come across an individual who is going to say, ‘But not me, that’s not about me.’” Therefore, a caregiver’s ability to tolerate error and occasional ego bruising is critical.