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Learning modules

Activity 11: End-of-life care

End-of-life care planning

End-of-life care planning and decision making may include and respect the wishes of the individual, the family and the community. [1] However in many countries, advance care planning and health directives are not a standard practice. Decisions about life sustaining measures or withholding treatment may be difficult for caregivers and relatives. [2]  Parents, families and carers of children with a life-limiting condition may find it particularly difficult to speak truthfully and openly to children about their illness. [3]

While advanced care plans and health directives are not standard in many countries, when a palliative diagnosis is made, a referral should be made to a palliative care specialist service for discussion. Through open conversations in plain English, discussions should be used as a way of identifying to medical staff the social or cultural pathways important to the person with a life-limiting condition and their family.

End-of-life care

Any culture can see the health system as intruders, taking loved ones away. In some cultures death is considered to be a natural part of the life cycle while others may see it as unnatural and a sign of weakness.   These underpinning beliefs can influence the way people would like to say goodbye to their families and communities at end-of-life.  Some people will insist that many family and members of the community are given the opportunity to say goodbye, where others want discretion so as not to draw attention to them or their illness.[3]

The preference in the place to receive end-of-life care and to die varies between individuals. For some cultures the importance exists in remaining with the family or returning to their origins to die. Where family and community support is strong, the desire for the provision of in home care is strong. For others the choice may be a care facility. [2] Many beliefs exist around the time and place of death. Some believe that dying and death that occurs at home is a sign of bad luck, where others believe that a person’s soul will be lost for ever if they die away from their home. [3]

Customs surrounding death, burial or cremation and bereavement, rituals

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 also celebrate and 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]

Provisions need to be given to allow physical space and noise to occur without disrupting other people being cared for. Additional support for care workers may be required to identify and manage the often multiple needs of all persons involved. [6] Acceptance by health professionals and care staff of cultural difference and practices occurs through education, communicating directly with people and their family, and recognising and respecting their individual beliefs surrounding customs, rituals and preferences. [7]

Thinking points


REFERENCES

 

  1. Graham, N., Gwyther, L., Tiso, T., & Harding, R. (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.
  2. Connolly, A., Sampson, E. L., & Purandare, N. (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.
  3. Wiener, L., McConnell, D. G., Latella, L., & Ludi, E. (2013). Cultural and religious considerations in pediatric palliative care. Palliative & Supportive Care, 11(1), 47-67.
  4. 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). Retrieved from http://nej.sagepub.com/content/early/2013/03/04/0969733012475252.abstract
  5. Kobler, K., Limbo, R., & Kavanaugh, K. (2007). Meaningful Moments: The Use of Ritual in Perinatal and Pediatric Death. The American Journal of Maternal/Child Nursing, 32(5), 288-295.
  6. Shahid, S., Bessarab, D., van Schaik, K. D., Aoun, S. M., & Thompson, S. C. (2013). Improving palliative care outcomes for Aboriginal Australians: service providers' perspectives. BMC Palliative Care, 12(26).
  7. Halm, M. A., Evans, R., Wittenberg, A., & Wilgus, E. (2012). Broadening cultural sensitivity at the end of life: an interprofessional education program incorporating critical reflection. Holistic Nursing Practice, 26(6), 335-349.