End-of-life care planning
End-of-life care planning and decision-making should include and respect the wishes of the individual, the family and the community. [1] However conversations about advance care planning and documenting advance care directives can be challenging for people from cultural groups where dying and death are not openly spoken about. Decisions about life-sustaining measures or withholding treatment can be difficult for families to make.[2] Parents and families of children with a life-limiting illness can find it particularly difficult to speak truthfully and openly to children about their illness. [3]
Multilingual resources on advance care planning are available on the Advance Care Planning Australia website.
End-of-life care
In some cultural groups death is considered to be a natural part of the life cycle, while others see it as unnatural and a sign of weakness. These beliefs influence the way people would like to say goodbye to their families at end of life. Some will insist that many family and other members of the community are given the opportunity to say goodbye, where others want discretion so as not to draw attention to them or the illness.[3]
Preferences in the place where end-of-life care and death occurs also varies between individuals and families. For some people, the place is not important as long as family can remain with the person. For others, it is important to be at home to return to a certain place to die.[2] Healthcare teams work together to support the values and wishes of the person and their family as much as possible.
Cultural practices surrounding death and bereavement
Strong community involvement may be pivotal to a person’s culture. A person’s care can involve and be carried out by family, relatives and people in the surrounding community. Members of the community may also mourn together. [4] Prior to and at the time of death, families may want to carry out cultural or religious ceremonies or rituals. These ceremonies and rituals can include family members bathing and dressing the person after death. [5]
It is important to consider cultural protocols and practices that are important to the person and family after death, and to ask about these in a sensitive way. For example, in some cultures it is important that no one outside of the family or community touches the person after they have died. Completing a verification of death though will require a member of the healthcare team to touch the person’s body. Explaining what is required and ensuring that this is understood is an important part of maintaining a trusting relationship.
Some families may express their grief openly and loudly. Providing space for this, without disrupting other people being cared for, is important. [6] Acceptance by health professionals and care staff of cultural differences and practices is important and is supported by, communicating directly with people and their family, and recognising and respecting beliefs surrounding customs, rituals and preferences. [7]
Thinking Points
- Describe ways that you would accommodate requests for visits from a large number of family and community members in the journey to the end of life.
- Is this similar to your own culture?
References
- Graham, N. et al, 2013. Traditional healers’ views of the required processes for a “good death” among xhosa patients pre- and post-death. Journal of Pain & Symptom Management, 46(3), 386-394.
- Connolly, A. et al, 2012. End-of-Life Care for People with Dementia from Ethnic Minority Groups: A Systematic Review. Journal of the American Geriatrics Society, 60(2), 351-360.
- Wiener, L. et al, 2013. Cultural and religious considerations in pediatric palliative care. Palliative & Supportive Care, 11(1), 47-67.
- Hiruy, K & Mwanri, L. 2013. End-of-life experiences and expectations of Africans in Australia: Cultural implications for palliative and hospice care. Nursing Ethics (Online).
- Kobler, K. et al, 2007. Meaningful Moments: The Use of Ritual in Perinatal and Pediatric Death. The American Journal of Maternal/Child Nursing, 32(5), 288-295.
- Shahid, S. et al, 2013. Improving palliative care outcomes for Aboriginal Australians: service providers’ perspectives. BMC Palliative Care, 12(26).
- Halm, MA. et al, 2012. Broadening cultural sensitivity at the end of life: an interprofessional education program incorporating critical reflection. Holistic Nursing Practice, 26(6), 335-349.