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Learning modules

Activity 5: Decision making and care planning

Including family and community in decision making

Western societies typically place high value on the right of individuals to make their own decisions and have choices about what will happen to them at end-of-life. Information about diagnosis, treatment options, decision making and future planning is typically given early in the course of illness management. In other cultures, the person’s place as part of a family and community is emphasised. Decisions relating to marriage selection, career choices and medical care can require greater involvement of the family and wider community. [1] In some cultures, several family members may have a role to play in the care of the person. [2]  

On admission and prior to discussing care with the person with a life-limiting condition and their family, identify the preferred person/s to direct questions and information to. In some cultures the gender of the person with a life-limiting condition influences the member of the community included in the discussions, with discussions only occurring with other members of the same sex. [3]

A cultural framework should be considered when discussing care with the person with a life-limiting condition and their family, with attention to:  

  • ‘truth telling’ when providing medical information
  • asking about preferences regarding cultural belief about death and dying
  • exploring family’s preferred role in decision making
  • deliberation and decision making in the context of cultural beliefs related to respect for authority, respect for elders, spirituality and trust [4]  
  • preferences for ongoing  treatment
  • what quality of life means to them.

Collusion, disclosure and ‘truth telling’

Preferences for information giving, relating to diagnosis and prognosis, can be influenced by culture. For example, withholding information can occur in some cultures that hold beliefs that giving a person bad news can be emotionally harmful and may hasten death. [4, 5] Reasons for non-disclosure include the belief that discussion of serious illness and death:

  • is disrespectful or impolite
  • may cause depression or anxiety in the person with a life-limiting condition
  • may cause the person with a life-limiting condition to lose hope
  • can make death or terminal illness real because of the power of the spoken word. [6]

Collusion between family and physicians can be deeply rooted in some cultural practices, where both parties act to conceal the seriousness of the illness from the person with a life-limiting condition. [7] Strategies to reduce collusion include: 

  • involving the person with a life-limiting condition in the decision regarding the level of knowledge they would like to know [7]  
  • providing information to families about the stages of the life-limiting condition and the ability to discuss progressing symptoms
  • acknowledging with care teams that collusion is a possibility
  • providing education to care teams about collusion, why this happens and the negative/positive impacts this may have on people with a life-limiting condition.

Thinking points


REFERENCES

  1. Chater, K., & Tsai, C. (2008). Palliative care in a multicultural society: a challenge for Western ethics. Australian Journal of Advanced Nursing (Online), 26(2), 95-100. Retrieved from www.ajan.com.au/Vol26/26-2_Chater.pdf
  2. 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
  3. 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).
  4. Sharma, R. K., & Dy, S. M. (2011). Cross-Cultural Communication and Use of the Family Meeting in Palliative Care. American Journal of Hospice and Palliative Medicine, 28(6), 437-444.
  5. 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.
  6. Searight, H. R., & Gafford, J. (2005). Cultural diversity at the end of life: Issues and guidelines for family physicians. American Family Physician, 71(3), 515-522.
  7. Low, J., Kiow, S., Main, N., Luan, K., Sun, P., & Lim, M. (2009). Reducing Collusion Between Family Members and Clinicians of Patients Referred to the Palliative Care Team. The Permanente Journal, 13(4), 11-15.