Research Commentary  September 2017
Aug 23, 2017
The focus in this edition is on culturally competent palliative care for CALD adults and older people and their families.
This research commentary focuses on the experiences of migrant and refugee background families, of palliative care in New Zealand and in other settlement societies. As well, the review examines the challenges faced by the health workforce trying to develop culturally competent palliative care for Culturally and Linguistically Diverse (CALD) patients and their families. This edition focuses on the experiences of adults and older people at the end of life and the next edition will focus on palliative/end of life care for CALD children and their families.
New Zealand faces the challenges of an ageing population, growing ethnic diversity and increasing demand for palliative care services. Asian groups now comprise 23% of the Auckland region’s population (SNZ, 2013). People aged 65 years or older, comprise around 10% of the Auckland population. Census 2013 shows significant growth in the Asian over 75 years age group compared to Census 2006 (SNZ, 2013). Middle Eastern and African Peoples in the Auckland region have also grown since Census 2006 from 1.3 to 1.9% of the population. Approximately 80 % of Middle Eastern and African people are born overseas (Walker, 2014).
Changing demography in New Zealand and in the Auckland region in particular necessitates the inclusion of CALD culturally competent models of palliative care to meet present and future population needs.
The concept of culturally appropriate care is reflected in the Hospice New Zealand Standards for Palliative Care, namely standards two and five which state (Hospice New Zealand, 2012, p.7):
Standard 2 – Ensuring equitable access
- Access to palliative care is available for all people based on need and is independent of current health status, diagnosis, age, cultural background or geography.
Standard 5 – Meeting the cultural needs of diverse family and whānau
- The unique cultural needs of the patient and their family and whānau are acknowledged and respected in the assessment and care planning processes.
For many CALD groups discussion about death and dying is considered taboo. The following articles help to inform health care practitioners about the cultural perspectives and beliefs about end of life care of the populations they care for.
Hospice New Zealand (2012). Hospice New Zealand Standards for Palliative Care. Quality review programme and guide 2012. New Zealand: Hospice New Zealand. Retrieved from: http://www.hospice.org.nz/cms_show_download.php?id=647
Statistics New Zealand (2013). 2013 Census QuickStats about national highlights. Wellington: Statistics New Zealand. Retrieved from: http://www.stats.govt.nz/Census/2013-census/profile-and-summary-reports/quickstats-about-national-highlights.aspx
Walker, R. (2014). Auckland region DHBs Asian and MELAA: 2013 Census Demographic and Health Profile. Auckland: Northern Regional Alliance (NRA). Retrieved from: http://www.ecald.com/assets/Resources/2013-Census-Profile.pdf
For more information on Advanced Care Planning, Advance Directives and End-of-Life Care for CALD Older People go to the CALD Older People: Working with Asian, Middle Eastern and African Older People resource for health providers on the eCALD® website http://www.ecald.com/assets/Resources/cald-older-people.pdf
Commentary provided by Dr Annette Mortensen, eCALD® Project Manager: Research & Development
The following are articles reviewed:
Article 1: Transnationals’ Experience of Dying in their Adopted Country: A Systematic Review.
For many migrants, the strong connection with their birth country is never completely severed, which may become pertinent at particular events and stages in life with inherent emotional impact. This may be particularly the case for end-of-life experience. Country of origin is acknowledged as important in the perception of migrants’ identity and degree of belonging in country of adoption, whereas the perception of home is dually experienced in some cases. Personal identity encompasses memories and continuity of successive generations for the future, as well as the after-life for some, and so has a bearing on dying preferences. Dying in their country of origin may be preferable because it enables more complete observation of rituals and practices among family and friends in familiar surroundings. However, this may not always be possible and particularly for those from refugee backgrounds.
This study undertook a systematic review of published evidence of research to identify the lived experience of migrants and refugees dying in a country different from their country of birth. Seven qualitative studies met the criteria. Countries in which the studies were conducted were the United States, United Kingdom, Spain, New Zealand, and Ghana. Study participants involved transnationals from Cambodia, the Philippines, India, the Caribbean, European countries, Guatemala, and Ghana. Most were in the older age group. Their health ranged from well retirees to those with chronic illness to those at end-of-life. Thematic analysis of these studies identified three main themes: sense of dual identity, importance of traditions from their country of origin, and dying preferences.
The experience of migrants dying in a country different from that of their birth in the reviewed studies involved not only integrating cultural and religious practices into their end of life care. Migrants and refugees needed to reconcile their sense of belonging to their original and to their adopted countries, to revisit their traditions and cultural values, and ensure that these were passed on to the next generation. Country of origin held significance in all three themes whether for a last visit before the end of life or to die. It afforded patients the opportunity to explore their dying preferences, whether this meant dying in their country of origin or having their body or ashes taken back, ensuring that specific religious rituals or cultural traditions for remembrance would take place. Differences between migrants and refugees are indicated, as return to country of origin may not be an option for the latter group.
Implications for practice
The review has implications for all health professionals, including those working in hospices, who deal with migrant and refugee background patients at the end of life.
There needs to be a conversation early on about a person’s dying preferences. This might include whether they wish to return to their country of origin to die and whether this is feasible.
- Migrants encounter feelings of dissonance around issues of dying between their countries of origin and adoption. Health professionals could assist these patients to come to terms with where they belong. These discussions may need to involve the whole family and include consideration of the cultural and religious practices the patient holds dear.
- Contemplation, discussion and decisions for memorialization are a crucial part of end-of-life care. Emotional and spiritual distress can result when contemplation of continuity, memorialization, and connections with family separated by distance cannot be resolved easily before dying. The implications for end-of-life care include the need for facilitation and support to enable migrants and refugees to address these needs.
- Educational resources for health professionals in this area are needed to enable practitioners to appreciate the wide range of issues that terminally ill migrant patients might face, and therefore be able to assist them to explore these issues and make decisions. This goes beyond a general awareness of cultural diversity to appreciation of how such patients may need to reconcile their dual identities, pass on their traditions to the next generation, and articulate their preferences for dying.
Authors: Bray, Y., Goodyear-Smith, F. & Gott, M.
Citation: Bray, Y., Goodyear-Smith, F. & Gott, M. (2015). Transnationals’ Experience of Dying in their Adopted Country: A Systematic Review. Journal of Palliative Medicine, 18 (1) 76-81.
Article 2: Patient and family perceptions of hospice services: ‘I knew they weren’t like hospitals’
INTRODUCTION: The vision for palliative care service provision in New Zealand is for all people who are dying and their families to have timely access to culturally appropriate, quality palliative care services. An Auckland hospice’s records show that the ethnically diverse population statistics were not reflected in the referrals for hospice services. The hospice catchment area has a very diverse ethnic population within a total catchment population of 332 900. According to hospice records, 57% of patients referred for hospice services were New Zealand European, whereas this ethnic group comprise only 37% of the regional population, which is 25% Pacific, 19% Asian, and 14% Maori.5 At the time of the study in 2007/2008, 13% of the hospice patients were Maori, and Pacific and Asian populations were under-represented. The aim of this research was to gain a patient-and-their-family perspective on the hospice, including exploration of components of service care that could be improved for various cultural groups.
METHODS: Patients currently under the care of the hospice and family members were recruited from hospice records. Semi-structured interviews were conducted to explore the emerging issues. The study collected data from a purposive sample of 18 palliative care patients or carer family members, ranging in age from 39 to 81 years, who reflected the ethnic diversity of the population of the region. Interviewing was carried out by an experienced research assistant and continued until data saturation was reached.
FINDINGS: Four key themes emerged—hospice personnel’s approach to patients, quality of service, cultural barriers, and strategies for future improvement. It was determined that the latter two were the most significant to address in this article.
CONCLUSION: While the qualitative nature of the study prevents generalisations, it appeared that Pacific and Asian patients were much less likely to take advantage of hospice services, such as home visiting, day-stay and rest-home facilities. There was a general lack of awareness of what services are provided, the philosophy of care and what hospice stands for, and indeed, the perception that when hospice gets involved, death is sure and imminent. This latter misperception has long been a barrier to access and requires address in education.
The study revealed the need for information-giving and education, including public profiling of the hospice to strengthen community involvement. Strategies to reduce ethnic disparities include strengthening the awareness of, and access to, services by connecting with cultural groups through churches, community and specific cultural media.
Authors: Bray, Y. & Goodyear-Smith, F.
Citation: Bray, Y. & Goodyear-Smith, F. (2013). Patient and family perceptions of hospice services: ‘I knew they weren’t like hospitals’. J Prim Health Care, 5 (3) 206-213.
Article 3: Exploring end-of-life care for South Asian kidney patients: interviewer reflections.
This article investigates the challenges faced by those trying to develop ‘culturally competent’ palliative care for South Asian cancer patients in Luton, UK. It discusses the findings of a phenomenological study of service providers’ attitudes to and experiences of caring for South Asian patients. Ten semi-structured in-depth interviews were carried out with a range of staff who work in home and community-based palliative care settings, including nurses, community liaison personnel and representatives of non-statutory organisations. The authors begin by considering how these service providers construct ideas of cultural difference and how these relate to philosophies of palliative care. They then examine attempts to deal with cultural diversity in everyday practice, focusing in particular on the social context of care in the home. The paper considers the ways in which staff attempt to incorporate the cultural needs of patients, family, kin and community. Rather than criticising current working practices, the authors highlight the complexity of delivering culturally competent services from the perspective of those working directly with patients. In doing so, they contribute to ongoing debates about the development of anti-discriminatory practice in health and social care. Sixteen patients were interviewed. The interviews took place in English, Urdu, Punjabi, Bengali and Gujarati.
Previous studies have identified a need for end-of-life care research to include ethnic minorities (Morton et al, 2010), identified the inequalities in kidney outcomes in the disproportionate numbers of South Asian patients with end stage kidney failure (ESKF) and longer waiting times for transplant compared to the white European population (Randhawa, 2012). Better understanding of how to improve access to quality end-of-life care for South Asian patients with ESKF is important to service providers providing care to diverse populations and this led to the development of this project.
Interviewers reported that all the patients recruited appeared to be a general lack of awareness among patients of what end-of-life care was. There seemed to be acceptance of their condition but in some cases avoidance of discussing end of life and dying any further. Whether this related to the choice of care pathway (many had chosen conservative care) and their stage along it (early on), or whether it was cultural, it was not possible to say from these observations, but interviewers thought that all patients would have benefited from more information and communication about end stage kidney care because of this lack of awareness.
The lack of awareness reported may relate to intergenerational and language barriers and reflect limited opportunities in practice for direct communication between patient and clinician if family members are always present for interpreting purposes as well as other reasons. Lack of awareness and communication in contributing to reduced access to palliative care in black and minority ethnic groups (BAME) has been highlighted in a wider review (Calanzani et al, 2013) as has the need for a more nuanced and individualised understanding of the influences of ethnicity and culture on access to end-of-life care (Koffman, 2014). The interviewer observations of patient experience in the kidney setting concur with these general findings suggesting that kidney patients were willing to discuss end-of-life care but may not have had the opportunity to do so previously. The researchers pose the following questions to health professionals involved in end-of-life care.
- How do you make sure that a person has all the information they need if they do not speak English fluently?
- How do you meet informal carer needs at the end of life? Are you aware of local services that could help?
Calanzani, N., Koffman, J. & Higginson, I.J. (2013). Palliative and End-Of-Life Care For Black, Asian And Minority Ethnic Groups In The UK: Demographic Profile and The Current State Of Palliative And End-Of-Life Care Provision. Retrieved from: http://tinyurl.com/kvsk6u7
Koffman, J. (2014). Servicing multi-cultural needs at the end of life. J Kidney Care, 40 (Supp 1)6-15. Retrieved from: http://onlinelibrary.wiley.com/doi/10.1111/jorc.12087/full
Morton, R.L., Tong, A. & Howard, K. et al (2010). The views of patients and carers in treatment decision making for chronic kidney disease: systematic review and thematic synthesis of qualitative studies. BMJ, 340 (112) doi:10.1136/bmj.c112. Retrieved from: http://www.bmj.com/content/bmj/340/bmj.c112.full.pdf
Randhawa, G. (2012). Renal health and transplantation: a focus on ethnicity. J Renal Care, 38 (S1), 109–14. Retrieved from: http://onlinelibrary.wiley.com/doi/10.1111/j.1755-6686.2012.00277.x/epdf
Authors: Wilkinson, E., Waqar, M., Gill, B., Hoque, P., Jetha, C., Kaur Bola,K., Mahmood, R., Mahmood, S., Saujani, R. & Randhawa, G.
Citation: Wilkinson, E., Waqar, M., Gill, B., Hoque, P., Jetha, C., Kaur Bola, K., Mahmood, R., Mahmood, S., Saujani, R. & Randhawa, G. (2017). Exploring end-of-life care for South Asian kidney patients: interviewer reflections. International Journal of Palliative Nursing, 23 (3), 120-128
Article 4: End-of-life experiences and expectations of Africans in Australia: Cultural implications for palliative and hospice care.
This article provides some insights into the sociocultural end-of-life experiences of Africans in Australia and their interaction with end-of-life care services. It provides points for discussion to consider an ethical framework that include Afro-communitarian ethical principles to enhance the capacity of current health services to provide culturally appropriate and ethical care. Similarly to New Zealand, the majority of African populations in Australia are from refugee backgrounds. Limited health literacy, English language skills, and cultural differences in the ways people view and experience end-of-life care present barriers to accessing palliative and hospice care services.
The article highlights the important differences between western cultural values around life and death decisions and African values. One of the ethical questions around end-of-life care in the use of life-sustaining interventions is the question of who makes the decision whether it is necessary or appropriate to use an intervention. The authors suggest that other alternative decision-making models that incorporate Afro-communitarian ethical principles that respect the patient’s preference to involve their families or community to handle such matters be considered.
In African cultures, the dying person has the moral obligation to be concerned for the spiritual good of others, and one of the ways that this obligation is discharged is by correcting the wrongs of the past through forgiveness. Thus, the dying person is expected to seek forgiveness from those who might have been hurt by her/his actions. Afro-communitarian perspectives of spiritual care that take into consideration the spiritual and religious beliefs of patients need to be included in the end-of-life care plan accompanied by a clear definition of what constitutes spiritual care and who provides spiritual care. The authors also argue that nurses and doctors have ethical responsibility to ensure that the religious and spiritual needs of their patients including discharging their moral obligation towards the good of others (through reconciliation) are well catered for without any prejudice or judgement.
Life in African cultures is communitarian, and the idea of community is central to the African ethos. This communal way of life brings not only family members or relatives but also people who identify themselves as part of ‘a community’ to participate in communal activities such as taking care of the elderly or the sick and frail. This has practical implications to how questions of patient autonomy particularly those related with confidentiality are dealt with. While Western bioethical models give priority to patient autonomy and hence privacy is strictly upheld. In the event that a member of a family is terminally ill, close and extended family members consider it their responsibility to take care of the person. Other community members offer psychological security to the individual by visiting and making sure that all is taken care of. The majority of Africans prefer to be taken care of at home by family members instead of institutions.
Authors: Hiruy, K & Mwanri, L.
Citation: Hiruy, K & Mwanri, L. (2014). End-of-life experiences and expectations of Africans in Australia: Cultural implications for palliative and hospice care. Nursing Ethics, 21(2) 187–197.
Article 5: Palliative Care Gains Roots in China.
There were an estimated 4.292 million new cancer cases and 2.814 million cancer deaths in mainland China in 2015 and 80% of cases were diagnosed as advanced disease. China has a rapidly aging population. There is an urgent need for palliative care in mainland China. The challenges to implementing palliative care services in China include: (1) cultural perceptions and misunderstanding of palliative care; (2) lack of professionally trained health-care providers; (3) administrative and policy problems; and (4) limited funding for palliative care and research.
Cultural perceptions and understandings of palliative care, as ‘care for a person approaching death’ are unacceptable in Chinese culture. Further, people feel the withdrawal of all anticancer treatments means being abandoned by medical staff. The lack of professionally trained health-care providers and administrators is another major barrier. Few staff trained in psychological support for oncology patients in mainland China. A further barrier to implementing palliative care for patients is family and patient expectations around doctor-patient communication. Families ask doctors to withhold bad news from patients in order to protect them. Subsequently, patients may have unrealistic expectations of curing their disease and may insist on having aggressive treatments even at very late stages. The authors recommend that training for palliative care specialists in doctor-patient communication is of high importance. More development is needed in clinical practice, education and research to develop and implement palliative care in mainland China.
Authors: Tang, L. & Silbermann, M.
Citation: Tang, L. & Silbermann, M. (2017). Palliative Care Gains Roots in China. J Palliat Care Med, 7, 3, DOI: 10.4172/2165-7386.1000e140