Table 4 Key barriers and future priorities for research and service development for end-of-life care

The Need for Culturally- and Spiritually-sensitive Palliative Care

• Different conceptualizations of PC between ethnic minority groups and people from Western cultures

• Varied EoL care attitudes and beliefs between HCPs, patients and families

• Lack of fit of religious notions to medicalized health care provision

• Research into the development of tools (such as video explanations or online and print resources in multiple languages) to help ethnocultural groups understand the concept and availability of advanced care planning.

• Research into the development of tools to support communication between HPCs and ethnocultural groups to discuss advance care planning

• Research on how to facilitate open discussion between HPCs, patients and families on religious requirements within PC

Impact of Spiritual Support on Quality of Life of Terminally Ill People

• PC providers lack of understanding of the need for spiritual requirements and how to facilitate these within the context of PC

• Decision-making in PC can follow too rigidly to the dominant cultural practices of the country where the PC is situated

• Research for the development of spiritual coping mechanisms that will enable PC providers to better understand and find ways to integrate the necessary spiritual practices into their care regime

• Research to better understand how spiritual and religious beliefs impact EoL care decision-making of different groups to enable more inclusive and holistic approaches initiated within PC delivery

Role of Families in End-of-Life Decision-making

• The Western medical model often dominates practices of care making it difficult to appropriately integrate the voices of the patient and family members in EoL decision-making (particularly for those with divergent beliefs and practices)

• Differences in EoL wishes, needs and requirements between family members, patients is often challenging for HCPs when providing care

• Research on how best to encourage cultural shifts from the biomedical perspective to more individual, person and family-centred approaches

• Research on how HCPs can best negotiate different wishes/needs between family members and the patient and together develop a forward plan; knowledge gained can the this process can be integrated into current training for HCPs

Cultural Factors Impacting End-of-Life Decision-making

• General mistrust of the healthcare system due to lack of knowledge, particularly HCPs working practices when providing EoL care

• Lack of knowledge on the types of EoL services available to patients and family members

• Incomplete life tasks: patients do not feel ready to die

• Undertake research on the EoL working practices of HCP to create an information resource made available to patients and families

• Undertake an environmental scan of available culturally-tailored services and resources, disseminate widely in multiple languages and ensure this is made available to patients and families and that it is kept up to date

• Research on how best to counsel patients to come to a good resolution of incomplete life tasks to enable them to approach death in a prepared way

End-of-Life Preferences by Ethnicity and Gender

• Preferences for communication regarding terminal illnesses differed between cultural groups additionally were differentiated by gender

• Patients perceptions of discriminatory attitudes from HCPs and this differed by gender

• Essentialist views of diverse cultures and traditions

• Differing place preferences for dying not feasible in clinical settings

• Undertake research on how to best inform HCPs on the heterogeneity that exists between and within ethnocultural groups

• Research on preferences of ‘a good death’ by different ethnocultural groups

Diverse Needs of Hospitalized Patients and Considerations for Practitioners

• HCPs are challenged with balancing religious and cultural beliefs and values with the beliefs and values of mainstream healthcare

• Communication barriers between HCPs and patients and family members

• Differences between Western and traditional foods,

• Differing cultural beliefs and customs i.e. about the concept of pain

• Develop processes and guidelines on how to best engage family members in the EoL care process

• Research on how to best incorporate cultural and spiritual values into mainstream healthcare provision

• Develop best practices and guidelines on how to best negotiate with family members the care plan in accordance with the patient’s changing health status

• Research on developing resources to inform HCPs the diverse food preferences

• Research on differentiated understandings of pain and pain care

Cultural Competence and Providers’ Values in Healthcare Decision-making

• HCPs’ insufficient cultural and spiritual knowledge and understandings of persons from diverse backgrounds

• Insufficient cultural competence training and lack of representation of ethnic, cultural and spiritual diversity among health service providers

• HCPs’ Inability to reflect and problematize their own unacknowledged anxieties, prejudices, biases and fears about other cultural and spiritual beliefs, practices and values

• Research on how to best locate spirituality as a point of connection between HCPs and patients to create safe spaces for open communication

• Research on appreciation of culturally-/spiritually-diverse beliefs, practices, values and traditions

• Develop resources on how HCPs can reflect and problematize their own unacknowledged anxieties, prejudices, biases and fears about other cultural and spiritual beliefs, practices and values

Interventions to Inform and Facilitate Culturally-Sensitive End-of-Life Care

• Insufficient funding mechanisms to build and create best practice resources for culturally-sensitive EoL care

• Difficulties with dissemination and normalization within healthcare practice to enhance uptake of resources from HCPs

• Develop Interprofessional educational programs incorporating critical reflection and dialogue to encouraged understandings of diverse needs

• Develop online/multimedia features, interactive dialogue, self-reflection and story-telling opportunities and resources to improve cultural awareness in educational and healthcare settings