Sharing death and dying: advance directives, autonomy and the family

Bioethics. 2004 Apr;18(2):87-103. doi: 10.1111/j.1467-8519.2004.00383.x.


This paper critically examines the liberal model of decision making for the terminally ill and contrasts it with the familial model that can be found in some Asian cultures. The contrast between the two models shows that the liberal model is excessively patient-centered, and misconceives and marginalises the role of the family in the decision making process. The paper argues that the familial model is correct in conceiving the last journey of one's life as a sharing process rather than a process of exercising one's prior or counterfactual choice, and concludes by suggesting a policy framework for the practice of familialism that can answer the liberal challenge that familialism cannot safeguard the patient from abuse and neglect.

MeSH terms

  • Advance Directive Adherence / ethics*
  • Advance Directives*
  • Asia
  • Cross-Cultural Comparison
  • Culture*
  • Decision Making / ethics*
  • Dementia
  • Family*
  • Humans
  • Models, Theoretical
  • Personal Autonomy*
  • Personhood
  • Proxy
  • Social Values
  • Terminal Care* / ethics
  • Third-Party Consent / ethics
  • Truth Disclosure
  • Western World