This review is the second to focus on culturally competent palliative care. The last commentary focused on palliative care for adults and older people. This review focuses on paediatric palliative care.
Growing cultural diversity in New Zealand society presents paediatric health care providers with the challenging task of providing appropriate palliative care for families from diverse cultures, religions, health beliefs, value systems, languages, and expectations of healthcare. Accommodating these differences is vital when end-of-life care is needed during childhood. This commentary reviews current literature addressing cultural considerations in the pediatric palliative care field. The articles review how culture and religion inform and shape pediatric palliative care. Recommendations are offered on strategies to approaches for CALD families to enhance child and family care and support during end of life care.
Commentary provided by Dr Annette Mortensen, eCALD® Services Project Manager: Research and Development.
The following articles are reviewed:
In 1999, a Paediatric Palliative Care (PPC) service was established at the Starship Children’s Hospital in Auckland. This small multidisciplinary team provides care across the hospital to home continuum in greater Auckland, and advice to other healthcare services nationally. This study demonstrates that those who were referred to PPC had a lower risk of hospital death. However, Pacific and Asian children were more likely to die in hospital than European children.
The aim of this study was to determine whether demographic and diagnostic characteristics were associated with location of death in a series of children with life-limiting illnesses. The participants were children and young people aged 28 days–18 years who died from a life-limiting illness between 2006 and 2009 inclusive. The study found that most children in New Zealand with a life-limiting illness die in hospital with a significant influence resulting from ethnic background, diagnosis and referral to the PPC service.
This study demonstrates an increased risk for Asian and Pacific children with life-limiting conditions dying in hospital. For Middle Eastern, Latin American, African (MELAA) and Asian groups, hospital deaths were independent of socioeconomic status, compared with all other groups. Asian peoples were at highest risk of hospital death compared with European. As the authors state, the reasons are likely to be complex, with cultural attitudes towards healthcare speculated to be a contributing factor, reflecting society of origin. Studies of paediatric oncology in Asian countries suggest differing practices compared with Western healthcare settings. In Taiwan, one study reported that 78.8% of children with cancer died in hospital, with over half admitted to intensive care in the last month of life, and 24% receiving cardiopulmonary resuscitation (CPR) (Tzuh et al., 2011).
Insights into the cultural beliefs which influence family’s preferences about where a child dies will enhance the end-of-life care planning for Asian families. In Asian cultures, it is the duty of parents to do everything possible to prolong the life of their child. Family members’ views may be in conflict with medical views regarding what constitutes the optimum quality of life and end-of-life treatment or care. Asian parents may be reluctant to discuss end of life care for their child, based on the belief that acknowledgement of their child’s impending death may be self-fulfilling.
When working with Asian families offer families the opportunity to discuss end of life care and advance care planning with a professional interpreter. Advance care plans can guide treatment during a period of deterioration and end of life care. When working with Asian families avoid using words such as ‘death’ and ‘fatal illness’. An alternative which may be less threatening is presenting issues to parents in hypothetical terms to determine levels of comfort with planning for end of life care for their child. Consider referring to, or obtaining advice from the paediatric palliative care team.
Authors: Chang, E., MacLeod, R. & Drake, R.
Citation: Chang, E., MacLeod, R. & Drake, R. (2013). Characteristics influencing location of death for children with life-limiting illness. Arch Dis Child, 98, 419–424.
Reference: Tzuh, T.S., Tang, S. Hung, Y.N. & Liu, T.W., et al. (2011). Pediatric end-of-life care for Taiwanese children who died as a result of cancer from 2001 through 2006. J Clin Oncol, 29, 890–4. Retrieved from: https://www.ncbi.nlm.nih.gov/pubmed/21189377.
Cultural practices and spiritual beliefs are the foundations on which many lives are based, and quality care requires medical providers to be both culturally sensitive and culturally competent. This article sought to explore and address the influence of culture and religion in paediatric palliative care, with emphasis on how these shape the universal experiences of illness, pain, and death.
Appreciation of cultural norms and customs is critical as it pertains to family decision makers and those who learn about the diagnosis or prognosis. For many cultures, family can be defined as not only immediate family members but also extended family members. For example, there are many cultures where nondisclosure of life-threatening diagnoses to a child is acceptable. Asian families often choose not to convey a terminal diagnosis to the child for fear that this will damage his or her hope, causing a poorer prognosis. Discussion about Advanced Care Planning (ACP) and Advanced Directives (AD) may be viewed as disrespectful and can bring bad luck. A death at home may also be believed to bring bad luck. The authors emphasise the need for professional health interpreters to be used to mediate communication between the family and health care professionals.
The authors provide a helpful table of major faith traditions, beliefs, and practices at the end of life but caution that cultural and religious traditions are dynamic and not static and cannot be generalised to all families. Asking family members about their preferences and rituals will help providers understand their particular needs and reduce the likelihood of stereotyping.
At the end of a child's life, the focus needs to be on quality as defined by the family, not the provider. Supporting parents so that they can fulfil their traditional role as care-givers, protectors, decision makers, providers of love and physical tenderness, and instillers of faith requires an individualised approach to end-of-life care. Wiener et al. (2015) show that respecting beliefs, customs, and traditions with a focus on preserving the integrity and sanctity of the parent–child relationship is of utmost importance in paediatric palliative care.
In Asian cultures, it is the duty of parents to do everything possible to prolong the life of their child. Where there is a conflict with medical views, for example,the family wants to fulfil their duty as parents by prolonging the life of the child, it is important for health practitioners to listen respectfully and to hear the values and views of family members. Offering advice with empathy and compassion will help reduce the family’s feelings of anguish about potentially not fulfilling their obligation to do the best for the child from their perspective. Explain your concerns about initiating treatment aimed at prolonging life, for example, causing suffering to the child with little or no benefit, prolonging the dying process, the possibility that ventilation may not be able to be weaned. Negotiate a management plan with the family that includes symptom management, psychosocial emotional and spiritual support. This may include a short trial of treatments aimed at prolonging life e.g. antibiotics, non-invasive ventilation. If necessary seek palliative care, ethical and medico-legal advice.
Authors: Wiener, L., McConnell, D.G., Latella, L. & Ludi, E.
Citation: Wiener, L., McConnell, D.G., Latella, L. & Ludi, E. (2013). Cultural and religious considerations in pediatric palliative care. Palliat Support Care, 11(1), 47–67.
The aim of this article is toreview the literature on the cultural factors influencing clinical care and family management of paediatric cancer. The review includes 72 articles related to cultural issues in paediatric cancer care. The authors found that cultural factors influenced many aspects of the cancer experience including illness representations, reaction to diagnosis, illness disclosure patterns, complementary and alternative medicine use, management of medical procedures, coping strategies, and end of life issues and concluded that increased awareness of cultural factors is needed to improve clinical care and reduce health disparities. The inclusion of specific strategies to approach cultural differences to improve clinical care, from diagnosis to cure/end of life, is extremely helpful for health practitioners.
Cultural differences highlight the importance of ongoing clear communication with families. Many of the potential conflicts between families and the medical team discussed in the review stem from a lack of mutual understanding that could either be prevented or minimised with effective communication. The authors recommend that providers initiate conversations about the potential influences of culture on treatment as doing so acknowledges the potential differences and portrays respect for these differences. Emphasising the partnership between families and providers (e.g., working together to optimise the child’s health) also communicates respect for the family and highlights the importance of communication in patient–family–provider relationships. Conversations addressing culture should be repeated throughout treatment because of the dynamic nature of family processes during the course of cancer treatment. The domains reviewed include illness representation, illness disclosure, complementary and alternative medicine use (CAM), managing medical procedures, coping and end-of-life care.
The table of recommendations for providing culturally tailored clinical care for families is very useful for health practitioners. The authors (clinical psychologists providing clinical care to culturally diverse patients with paediatric chronic illnesses and their families), provide example scripts for how practitioners can translate these recommendations into conversations with their patients/families. It is important as well to be aware of the impact of acculturation. While a formal acculturation assessment is not realistic, it is good practice to discuss health beliefs with the family, to understand the intersection between the individuals and their culture.
Authors: Gray, W.N. et al.
Citation: Gray, W.N. et al., (2014). Cultural Influences in Pediatric Cancer: From Diagnosis to Cure/End of Life. Journal of Pediatric Oncology Nursing, 31(5) 252-271.
The aim of this American study is to evaluate the relationship between the nurse work environment and the delivery of culturally sensitive perinatal hospice care. Researchers undertook a retrospective, correlational study which used data from the Unites States National Home and Hospice Care Survey, which includes a nationally representative sample of hospice care providers. A multivariate logistic regression model was used to estimate the relationship between the delivery of culturally sensitive care and the nurse work environment.
The study finding was that perinatal hospices which were also clinical training sites were more likely to offer culturally sensitive care for perinatal families, for example, the odds of offering interpreter services and for having translated material available were four times higher for perinatal hospices that were teaching sites. Valuing education and continued learning was demonstrated in the teaching status of a hospice organisation and educated, baccalaureate-prepared registered nurse staff. The findings revealed that when perinatal hospices create a technology climate through electronic medical records, they are more likely to have translated patient-related materials and multilingual staff.
The authors maintain that the first step towards achieving culturally sensitive perinatal hospice care is assessing the unique needs of families. Cultural assessment is recommended as providing a strong foundation upon which to build the therapeutic, trusting relationships between the nurse and family which is necessary to navigate perinatal loss.
The authors recommend that future research might explore how best to train staff to provide culturally sensitive care and how to promote the value of continued learning at the organisational level. New Zealand nurses have the advantage of accessing accredited CALD cultural competency training on-line or face to face wherever they work. To ensure that cultural assessment is integrated into care and communicated to interdisciplinary colleagues, nurses can access the cultural assessment tools in the eCALD®Services Maternal Health for CALD Women Resource: Working with Asian, Middle Eastern and African women.
Authors: Mixer, S.J. et al.
Citation: Mixer, S.J. et al., (2015). The relationship between the nurse work environment and delivering culturally sensitive perinatal hospice care. Int J Palliat Nurs, 21 (9), 423–429.
Reference: Waitemata DHB, eCALD® Services (2017). Caring for Asian Children: Culture and Health: A Resource for Health Providers: Working with Asian Families. Auckland: WDHB, eCALD® Services. Retrieved from: http://www.ecald.com/resources/cross-cultural-resources/maternal-health-for-cald-women/.
October 2017