Providing Culturally Sensitive Pediatric Palliative Care
Coping with the potential loss of one’s child is a devastating experience, and cultural influences may further hinder the opportunity for the integration of pediatric palliative care. A 2008 survey published in Pediatrics reported that over 40% of health care providers identified cultural differences as a frequently occurring barrier to adequate pediatric palliative care. Children with life-limiting illnesses deserve a cultural reassessment of how we care for them when the goal of care has changed from curative to palliative.
The concept of cultural competence and its necessity in the treatment of diverse patients
has come to the surface of the medical community within the last decade. Health care providers must demonstrate knowledge and respect of individual as well as group value systems to become effective in providing care to this population. In response to the United States becoming increasingly multicultural, the Institute of Medicine has published two reports that support the need for cross-cultural training: Unequal Treatment: Confronting Racial and Ethnic Disparities in Healthcare and The Future of Nursing: Leading Change, Advancing Health.
According to the American Academy of Pediatrics, the goals of pediatric palliative care are the same goals as adult palliative care, which includes providing support and care for pain, psychological and social stress, physical symptom management, and spirituality. However, the difference regarding pediatric palliative care is that the focus is specifically aimed at serving the needs of the child as well as the family. A challenge specific to pediatric palliative services is that end-of-life care for a child seems inherently unnatural in the mind of many parents and family members who often struggle to accept that nothing more can be done for a child.
The literature frequently references the underutilization of palliative care services among ethnic minorities, including African American, Latino, Native American, Russian, and Vietnamese cultures. The following attributes have been identified in the literature as a source of underutilization: a lack of the family’s familiarity with hospice and palliative care services; language barriers; religious differences; difficulties in accessing insurance; distrust of the health care services; and discomfort with introducing additional health care with professionals not of one’s ethnic or cultural background.
In 2002, the Initiative for Pediatric Palliative Care (IPPC) published recommendations for providing culturally sensitive end-of-life care that utilizes a framework that includes: improving pediatric palliative care by maximizing family involvement; understanding the influence of religion in pediatric palliative care; and understanding how culture influences lifestyle and shapes the universal experiences of illness, pain, and death across the cultural barriers. An appreciation for cultural norms and customs is critical if we are to be successful in supporting the child and the family in reducing suffering and providing comfort and support.
Cultural Influence in Decision Making
As a result of the IPPC recommendations, several organizations have created reference materials and guidelines for clinicians to use. For instance, the University Of California School Of Nursing published Culture and Clinical Care, which discusses culturally competent care across 35 cultural groups. The University of Washington Medical Center (UWMC) offers Culture Clues fact sheets of useful tips when communicating with Latino, Russian, and Vietnamese cultures (among others). The journal Palliative and Supportive Care published an article in 2013 comparing cultural and religious considerations in pediatric palliative care. These resources cited the following cultural differences in end-of-life decision making:
African American
• Many aspects of African American culture today reflect the culture of the general U.S. population.
• The structure in African American families is often nuclear and extended with nonrelated “family” members.
• The family may be matriarchal, although father or mother may take on the decision-making role.
Latino
• Family involvement is very important in the Latino culture.
• The family-centered model of decision making is highly valued and may be more important than patient autonomy.
• The mother is typically regarded as the primary caregiver and often will make the decisions regarding care; however, when possible, Latino women will seek permission of the child’s father before a decision is made regarding continuing or discontinuing treatment.
• Often, when language becomes a barrier, the normative hierarchical family structure is waived and deferred to the family spokesperson who speaks the best English.
Native American
• Given the importance of family in the Native American culture, the entire family may be included when making decisions and signing documents.
• Native Americans may also desire that information is shared with community leaders so that they can assist in the decision-making process for the child.
Russian
• Health care information is shared with family members.
• The entire family makes decisions along with the patient, and the person closest to the patient often has the most influence.
• The doctor—not the nurse—is expected to share the patient’s prognosis with the patient and family, as he or she is typically regarded as the ultimate authority in all medical matters.
Vietnamese
• Family has a central role.
• Decisions are often the responsibility of the eldest male, yet older women may also have significant influence.
• Traditionally, the eldest male is the family spokesman; however, the person with the best English often assumes this role.
• Removal of life support may require extensive family discussion, which places the responsibility for the decision on the entire family instead of one individual.
Importance of Faith and Religious Traditions
Faith and religious traditions are held of great importance in the majority of cultures; however, it is important to note that cultural traditions are dynamic and cannot be generalized to all families. While guidelines may offer an approach to religious considerations pertaining to end-of-life care, the provider must perform an individual assessment of the family as to their beliefs and practices. The UWMC’s tip sheets and the 2013 study in Palliative and Supportive Care offer a glimpse of the cultural differences in religious traditions during end-of-life care:
African American
• Death rituals for African Americans vary widely, related to the diversity in religious affiliations, geographic region, education, and economics.
• Emotional expression varies; you are likely to see a mix ranging from public displays of crying and wailing to silent and stoic behavior.
• Death is not viewed as a formal break with life, given the belief that the spirit/soul continues and may be able to interact from the next plane of existence.
• Bereaved African Americans are more likely to seek help from clergy than from health care professionals.
• Depending on their specific cultural beliefs, African Americans might involve a healer or “root worker” whose role is important in orchestrating the natural, spiritual, and relational aspects of life.
• African Americans often rely on the health care team for help with cleaning and preparation of the body.
• African Americans may refuse to stop life-prolonging treatments because of belief in divine rescue.
Latino
• Prayer and ritual may be a part of the end-of-life process for the patient and family members.
• Latino families may request that they keep candles burning 24 hours a day as a way of sustaining worship. Since candles are not permissible in hospital settings, the suggestion of using electric candles is often viewed as an appreciated gesture of respecting one’s beliefs.
• The patient and the family may wish to display pictures of saints, as saints have specialized as well as general meanings for Catholics.
• Some Latino families may want to honor their deceased relative by cleansing the body.
• The last rites are often important for Latinos who are Catholic when a person is close to death. If your patient is Catholic, ask about their preference and plans for this ritual.
• Latinos often demonstrate wailing and strong emotions at the time of death, which may be considered a sign of respect.
Native American
• Death rituals among the Native American tribes vary widely because they all have different religious and spiritual beliefs. It is important to assess the religious practice of the individual and follow accordingly.
• Native Americans may wish to seek traditional healers for help in restoring harmony of life.
• Herbal remedies may be used in healing ceremonies.
• The medicine man or spiritual leader leads the ritual.
• The circle is symbolic in the ritual, as in the circle of life; therefore, the family and relatives may form a circle around the patient’s bed.
• Native Americans follow the belief that the spirit of the person never dies.
• Silence is highly valued.
• Native Americans may be hesitant to sign advanced directives or other end-of-life documents because of general mistrust related to past misuse of written treaties and documents with the U.S. government.
Russian
• Russians may practice different denominations. Depending on the denomination, the family may desire to have a pastor, priest, or rabbi present at the moment of death.
• The family plays a major role in supporting the sick. Usually, there is a family member present at the bedside to attend to the patient at all times.
• Russians who practice their religion may consider prayer an important and powerful healing tool.
• In the Russian culture, relatives and friends are all expected to visit the patient. They frequently bring food and may include gifts for the clinicians as a sign of respect and thanks.
• Wailing and other displays of grief may not be demonstrated as they may be reserved primarily for expression in the home (as opposed to public display).
• Often, the family may have some specific practices for washing the body after the death. It is important to ask about preferences and try to accommodate.
Vietnamese
• It is important to note that there are a variety of Vietnamese cultures and religious practices. Most Vietnamese are Buddhist; however, other religious preferences include Catholic, Evangelical Protestant, and Chinese Confucianism.
• Vietnamese who practice the Buddhist faith may call a monk to give blessings. Buddhist patients and family may chant and create an altar for prayer. Vietnamese who are Catholic may ask for a priest for last rites.
• In the Vietnamese culture, white is considered the color for mourning.
• The expression of grief varies in the Vietnamese culture. Families may express grief with either a stoic response or with crying and weeping.
• Upon death, organ transplant and/or autopsies may be accepted by the Vietnamese family with very careful explanation.
• The bereavement process of the Vietnamese culture has an extremely positive impact on family health. There is intensive and extensive community involvement with frequent visits from family and friends when death first occurs and then visits are slowly weaned off over a 2- to 3-year period.
Today’s multicultural society presents health care providers with unique challenges for providing cultural care and competence to the pediatric palliative care population. This article attempts to provide insight to but a few of the cultures that we may come across in our practice. Every person is unique, and clinicians who understand their patients’ cultural values, beliefs, and practices are more likely to have positive interactions with their patients and provide culturally acceptable care.
In nursing school, we were often told by our instructors to “treat the patient as you would want to be treated.” When it comes to treating patients with a different cultural background, this mantra should translate to “treat your patients as they want to be treated instead of how you would want to be treated.”
Karen J. Smith, MSN, CRNP, NP-C, is a doctoral nursing student at Wilkes University in Wilkes-Barre, Pennsylvania. Her background includes hospice and palliative care, and she has written health-related articles for West End Happenings.
