Skip to main content
Log in

Blood ties and trust: a comparative history of policy on family consent in Japan and the United States

  • Original Article
  • Published:
Monash Bioethics Review Aims and scope Submit manuscript

Abstract

Informed consent honors the autonomous decisions of patients, and family consent places importance on decisions made by their families. However, there is little understanding of the relationship between these two medical decision-making approaches. Both approaches exist in Japan as part of its truth disclosure policy. What is the status of family consent in the United States, from which Japan introduced informed consent? This paper compares the situation in the United States with that in Japan, where family consent has been combined with informed consent. It then explains the history of policy development through which family consent was added to informed consent in the United States. Based on this analysis, the paper suggests that the relationship between informed consent and family consent in the United States was established on the basis of a family model that places more importance on trust-based relationships than it does on blood ties.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Similar content being viewed by others

References

  • Akabayashi, A., and B.T. Slingsby. 2006. Informed consent revisited: Japan and the U.S. American Journal of Bioethics 6 (1): 9–14.

    Article  Google Scholar 

  • Akabayashi, A., M.D. Fetters, and T.S. Elwyn. 1999. Family consent, communication, and advance directive for cancer disclosure: A Japanese case and discussion. Journal of Medical Ethics 25: 296–301.

    Article  Google Scholar 

  • Asch, D.A., J. Hansen-Flaschen, and P.N. Lanken. 1995. Decisions to limit or continue life-sustaining treatment by critical care physicians in the United States: Conflicts between physicians’ practices and patients’ wishes. American Journal of Respiratory and Critical Care Medicine 151: 288–292.

    Article  Google Scholar 

  • Bai, K., and R. Muir. 1975. Around the Karen Quinlan case: Interview with Judge R. Muir. The International Journal of Medicine and Law 1: 45–67.

    Google Scholar 

  • Beauchamp, T.L. 1997. Comparative studies: Japan and America. In Japanese and Western bioethics: Studies in moral diversity, ed. K. Hoshino, 25–47. Dordrecht: Kluwer.

    Chapter  Google Scholar 

  • Beauchamp, T.L., and J.F. Childress. 2013. Principles of biomedical ethics, 7th ed. New York: Oxford University Press.

    Google Scholar 

  • Berg, J.W., P.S. Appelbaum, C.W. Lidz, and L.S. Parker. 2001. Informed consent: Legal theory and clinical practice, 2nd ed. New York: Oxford University Press.

    Google Scholar 

  • Buchanan, A.E., and D.W. Brock. 1990. Deciding for others: The ethics of surrogate decision making. New York: Cambridge University Press.

    Book  Google Scholar 

  • Charles, C., A. Gafni, and T. Whelan. 1997. Shared decision-making in the medical encounter: What does it mean? Social Science and Medicine 44: 681–692.

    Article  Google Scholar 

  • Charles, C., A. Gafni, and T. Whelan. 1999. Decision-making in the physician–patient encounter: Revisiting the shared treatment decision-making model. Social Science and Medicine 49: 651–661.

    Article  Google Scholar 

  • Cong, Y. 2004. Doctor–family–patient relationship: The Chinese paradigm of informed consent. Journal of Medicine and Philosophy 29: 149–178.

    Article  Google Scholar 

  • Emanuel, E.J., and L.L. Emanuel. 1992. Four models of the physician–patient relationship. JAMA 267: 2221–2226.

    Article  Google Scholar 

  • Evans, J.H. 2011. The history and future of bioethics: A sociological view. New York: Oxford University Press.

    Book  Google Scholar 

  • Faden, R.R., T.L. Beauchamp, and N.M.P. King. 1986. A theory and history of informed consent. New York: Oxford University Press.

    Google Scholar 

  • Fan, R. 1997. Self-determination vs. family-determination: Two incommensurable principles of autonomy. Bioethics 11: 309–322.

    Article  Google Scholar 

  • Fan, R., and J. Tao. 2004. Consent to medical treatment: The complex interplay of patients, families, and physicians. Journal of Medicine and Philosophy 29: 139–148.

    Article  Google Scholar 

  • Fetters, M.D. 1998. The family in medical decision making: Japanese perspectives. The Journal of Clinical Ethics 9: 132–146.

    Google Scholar 

  • Fox, R.C. 1989. The sociology of medicine: A participant observer’s view. Upper Saddle River: Prentice Hall.

    Google Scholar 

  • Fox, R.C., and J.P. Swazey. 2008. Observing bioethics. New York: Oxford University Press.

    Book  Google Scholar 

  • Gutheil, T.G., and P.S. Appelbaum. 1983. Substituted Judgment: Best interests in disguise. The Hastings Center Report 13 (3): 8–11.

    Article  Google Scholar 

  • Harmon, L. 1990. Falling off the vine: Legal fictions and the doctrine of substituted judgment. The Yale Law Journal 100: 1–71.

    Article  Google Scholar 

  • Higuchi, N. 1992. The patient’s right to know of a cancer diagnosis: A comparison of Japanese paternalism and American self-determination. Washburn Law Journal 31: 455–473.

    Google Scholar 

  • Hirschman, K.B., J.M. Kapo, and J.H.T. Karlawish. 2006. Why doesn’t a family member of a person with advanced dementia use a substituted judgment when making a decision for that person? The American Journal of Geriatric Psychiatry 14: 659–667.

    Article  Google Scholar 

  • Jonsen, A.R. 1998. The birth of bioethics. New York: Oxford University Press.

    Google Scholar 

  • Kato, I. 1984. Bioethics and law: Concerning health care and medical science. Economia 80: 1–23. (in Japanese).

    Google Scholar 

  • Kuczewski, M. 2004. From informed consent to substituted judgment: Decision-making at the end-of-life. HEC Forum 16: 27–37.

    Article  Google Scholar 

  • Lock, M. 2001. Twice dead: Organ transplantation and the reinvention of death. Oakland: University of California Press.

    Google Scholar 

  • Makoul, G., and M.L. Clayman. 2006. An integrative model of shared decision making in medical encounters. Patient Education and Counselling 60: 301–312.

    Article  Google Scholar 

  • Ministry of Health and Welfare (Japan). 1985. Considering bioethics: Meeting report on bioethics. Tokyo: Igaku Shoin. (in Japanese).

    Google Scholar 

  • Ministry of Health and Welfare (Japan) & Japan Medical Association. 1989. Terminal care: Report and examination. Tokyo: Chuohoki Publishing. (in Japanese).

    Google Scholar 

  • Nagai, H. 2016. Autonomy from the family: A history of public policy on medical decision-making in Japan. Asian Bioethics Review 8 (2): 94–108.

    Article  Google Scholar 

  • Ohara, K. 1982. Attitude survey on cancer and death: Comparative examination of doctors, nurses and the general public. Japan Medical Journal 3050: 43–50. (in Japanese).

    Google Scholar 

  • O’Neill, O. 2002. Autonomy and trust in bioethics. Cambridge: Cambridge University Press.

    Book  Google Scholar 

  • Parks, S.M., L. Winter, A.J. Santana, B. Parker, J.J. Diamond, M. Rose, and R.E. Myers. 2011. Family factors in end of life decision making: Family conflict and proxy relationship. Journal of Palliative Medicine 14: 179–184.

    Article  Google Scholar 

  • Pellegrino, E.D. 1992. Intersections of Western biomedical ethics and world culture: Problematic and possibility. Cambridge Quarterly of Healthcare Ethics 1: 191–196.

    Article  Google Scholar 

  • President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (U.S.). 1982. Making health care decisions: Report on the ethical and legal implications of informed consent in the patient-practitioner relationship. Washington, D.C.: U.S. Government Printing Office.

    Google Scholar 

  • President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (U.S.). 1983. Deciding to forego life-sustaining treatment: A report on the ethical, medical, and legal issues in treatment decisions. Washington, D.C.: U.S. Government Printing Office.

    Google Scholar 

  • Rothman, D.J. 1991. Strangers at the bedside: A history of how law and bioethics transformed medical decision making. New York: Basic Books.

    Google Scholar 

  • Supreme Court of New Jersey. 1976. In the matter of Karen Quinlan: The complete briefs, oral arguments, and opinion in the New Jersey Supreme Court. Arlington: University Publications of America.

    Google Scholar 

  • Torke, A.M., G.C. Alexander, and J. Lantos. 2008. Substituted judgment: The limitations of autonomy in surrogate decision making. Journal of General Internal Medicine 23: 1514–1517.

    Article  Google Scholar 

  • Veatch, R.M. 1982. An ethical framework for terminal care decisions: A new classification of patients. Journal of the American Geriatrics Society 32: 665–669.

    Article  Google Scholar 

  • Veatch, R.M. 1993. Forgoing life-sustaining treatment: Limits to the consensus. Kennedy Institute of Ethics Journal 3: 1–19.

    Article  Google Scholar 

  • Veatch, R.M. 2000. Doctor does not know best: Why in the new century physicians must stop trying to benefit patients. Journal of Medicine and Philosophy 25: 701–721.

    Article  Google Scholar 

  • Veatch, R.M. 2009. The evolution of death and dying controversies. Hastings Center Report 139 (9): 16–19.

    Article  Google Scholar 

  • Vig, E.K., J.S. Taylor, H. Starks, E.K. Hopley, and K. Fryer-Edwards. 2006. Beyond substituted judgment: How surrogates navigate end-of-life decision making. Journal of the American Geriatrics Society 54: 1688–1693.

    Article  Google Scholar 

  • Whitney, S.N., A.L. McGuire, and L.B. McCullough. 2003. A typology of shared decision making, informed consent, and simple consent. Annals of Internal Medicine 140: 54–59.

    Article  Google Scholar 

  • Winter, L., and S.M. Parks. 2008. Family discord and proxy decision makers’ end-of-life treatment decisions. Journal of Palliative Medicine 11: 1109–1114.

    Article  Google Scholar 

Download references

Acknowledgments

This study was made possible in part by grant-in-aid for scientific research (KAKENHI) No. 23613001, from the Ministry of Education, Culture, Sports, Science and Technology of Japan.

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Hiroyuki Nagai.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Nagai, H. Blood ties and trust: a comparative history of policy on family consent in Japan and the United States. Monash Bioeth. Rev. 34, 226–238 (2017). https://doi.org/10.1007/s40592-017-0069-3

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s40592-017-0069-3

Keywords

Navigation