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. 2003 Feb;29(1):44–50. doi: 10.1136/jme.29.1.44

Knowledge of the legislation governing proxy consent to treatment and research

G Bravo 1, M Paquet 1, M Dubois 1
PMCID: PMC1733676  PMID: 12569196

Abstract

Objective: To assess the knowledge of four groups of individuals regarding who is legally authorised to consent to health care or research involving older patients.

Design: A provincewide postal survey.

Setting: Province of Quebec, Canada.

Participants: Three hundred older adults, 434 informal caregivers of cognitively impaired individuals, 98 researchers in aging and 136 members of research ethics boards (REBs).

Measurements: Knowledge was assessed through a pretested postal questionnaire comprising five vignettes that describe hypothetical situations involving an older adult who requires medical care or is solicited for research. The respondent had to identify the person who is legally authorised to provide consent.

Results: Nearly 80% of all respondents provided the correct answer when the hypothetical scenario depicted a person who was competent to consent or incompetent but legally represented. Knowledge was worse (from 2% among older adults to 44% among REB members) for the scenario describing a research situation that involved an incompetent adult without a legal guardian.

Conclusion: The observed lack of knowledge raises doubts about the ability of current legislation to truly protect the rights of older adults with diminished decision making capacity. It points to the need for educational programmes aimed at increasing public awareness of the legislation put in place for those requiring special protection.

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Selected References

These references are in PubMed. This may not be the complete list of references from this article.

  1. Appelbaum P. S., Grisso T. Assessing patients' capacities to consent to treatment. N Engl J Med. 1988 Dec 22;319(25):1635–1638. doi: 10.1056/NEJM198812223192504. [DOI] [PubMed] [Google Scholar]
  2. Asch D. A., Jedrziewski M. K., Christakis N. A. Response rates to mail surveys published in medical journals. J Clin Epidemiol. 1997 Oct;50(10):1129–1136. doi: 10.1016/s0895-4356(97)00126-1. [DOI] [PubMed] [Google Scholar]
  3. Ashby M., Wakefield M., Beilby J. General practitioners' knowledge and use of living wills. BMJ. 1995 Jan 28;310(6974):230–230. doi: 10.1136/bmj.310.6974.230. [DOI] [PMC free article] [PubMed] [Google Scholar]
  4. Bowker L., Stewart K., Hayes S., Gill M. Do general practitioners know when living wills are legal? J R Coll Physicians Lond. 1998 Jul-Aug;32(4):351–353. [PMC free article] [PubMed] [Google Scholar]
  5. Capron A. M. Ethical and human-rights issues in research on mental disorders that may affect decision-making capacity. N Engl J Med. 1999 May 6;340(18):1430–1434. doi: 10.1056/NEJM199905063401812. [DOI] [PubMed] [Google Scholar]
  6. Dubler N. N. Legal judgments and informed consent in geriatric research. J Am Geriatr Soc. 1987 Jun;35(6):545–549. doi: 10.1111/j.1532-5415.1987.tb01402.x. [DOI] [PubMed] [Google Scholar]
  7. Emanuel E. J., Wendler D., Grady C. What makes clinical research ethical? JAMA. 2000 May 24;283(20):2701–2711. doi: 10.1001/jama.283.20.2701. [DOI] [PubMed] [Google Scholar]
  8. Feinberg L. F., Whitlatch C. J. Are persons with cognitive impairment able to state consistent choices? Gerontologist. 2001 Jun;41(3):374–382. doi: 10.1093/geront/41.3.374. [DOI] [PubMed] [Google Scholar]
  9. Hopp F. P. Preferences for surrogate decision makers, informal communication, and advance directives among community-dwelling elders: results from a national study. Gerontologist. 2000 Aug;40(4):449–457. doi: 10.1093/geront/40.4.449. [DOI] [PubMed] [Google Scholar]
  10. Hébert R., Bravo G., Korner-Bitensky N., Voyer L. Refusal and information bias associated with postal questionnaires and face-to-face interviews in very elderly subjects. J Clin Epidemiol. 1996 Mar;49(3):373–381. doi: 10.1016/0895-4356(95)00527-7. [DOI] [PubMed] [Google Scholar]
  11. Karlawish J. H., Schmitt F. A. Why physicians need to become more proficient in assessing their patients' competency and how they can achieve this. J Am Geriatr Soc. 2000 Aug;48(8):1014–1016. doi: 10.1111/j.1532-5415.2000.tb06904.x. [DOI] [PubMed] [Google Scholar]
  12. Marson D. C., Earnst K. S., Jamil F., Bartolucci A., Harrell L. E. Consistency of physicians' legal standard and personal judgments of competency in patients with Alzheimer's disease. J Am Geriatr Soc. 2000 Aug;48(8):911–918. doi: 10.1111/j.1532-5415.2000.tb06887.x. [DOI] [PubMed] [Google Scholar]
  13. Michels R. Are research ethics bad for our mental health? N Engl J Med. 1999 May 6;340(18):1427–1430. doi: 10.1056/NEJM199905063401811. [DOI] [PubMed] [Google Scholar]
  14. Miller T. E., Coleman C. H., Cugliari A. M. Treatment decisions for patients without surrogates: rethinking policies for a vulnerable population. J Am Geriatr Soc. 1997 Mar;45(3):369–374. doi: 10.1111/j.1532-5415.1997.tb00956.x. [DOI] [PubMed] [Google Scholar]
  15. Moreno J., Caplan A. L., Wolpe P. R. Updating protections for human subjects involved in research. Project on Informed Consent, Human Research Ethics Group. JAMA. 1998 Dec 9;280(22):1951–1958. doi: 10.1001/jama.280.22.1951. [DOI] [PubMed] [Google Scholar]
  16. Singer P. A., Robertson G., Roy D. J. Bioethics for clinicians: 6. Advance care planning. CMAJ. 1996 Dec 15;155(12):1689–1692. [PMC free article] [PubMed] [Google Scholar]
  17. Stewart K., Bowker L., Hayes S., Gill M. Only half of GPs in study knew that advance directives could carry legal force in UK. BMJ. 1999 Jan 9;318(7176):123–123. doi: 10.1136/bmj.318.7176.123a. [DOI] [PMC free article] [PubMed] [Google Scholar]
  18. Sugarman J., McCrory D. C., Hubal R. C. Getting meaningful informed consent from older adults: a structured literature review of empirical research. J Am Geriatr Soc. 1998 Apr;46(4):517–524. doi: 10.1111/j.1532-5415.1998.tb02477.x. [DOI] [PubMed] [Google Scholar]
  19. Truog R. D., Robinson W. Informed consent for research: the achievements of the past and the challenges of the future. Anesthesiology. 1999 Jun;90(6):1499–1501. doi: 10.1097/00000542-199906000-00002. [DOI] [PubMed] [Google Scholar]
  20. Waisel D. B., Truog R. D. Informed consent. Anesthesiology. 1997 Oct;87(4):968–978. doi: 10.1097/00000542-199710000-00033. [DOI] [PubMed] [Google Scholar]
  21. Weijer C., Dickens B., Meslin E. M. Bioethics for clinicians: 10. Research ethics. CMAJ. 1997 Apr 15;156(8):1153–1157. [PMC free article] [PubMed] [Google Scholar]
  22. Zaman S., Battcock T. Doctors need to know more about advance directives. BMJ. 1998 Jul 11;317(7151):146–147. doi: 10.1136/bmj.317.7151.146a. [DOI] [PMC free article] [PubMed] [Google Scholar]

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