Advertisement

Integrity in Guardianship Decision Making: Applying the Will and Preferences Paradigm

Published:February 11, 2022DOI:https://doi.org/10.1016/j.jamda.2022.01.050

      Abstract

      Guardianship laws have changed significantly over the 20th and 21st centuries to shift from the “best interests” model to the “supported decision-making” model. Such changes reflect the importance of supporting the dignity of risk of persons who lack decision-making capacity for some decisions. Recent changes to the Victorian Guardianship and Administration Act 2019 (Vic) in Australia require guardians to give effect to the “will and preferences” of the represented person, as far as practicable. The changes reveal a compromise between the competing rights to autonomy and to safety. Here, we explore the meaning of “will and preferences” before considering the personal factors that may contribute to the understanding of an individual’s will and preferences. The practical challenge of ascertaining, interpreting, and giving effect to a person’s will and preferences are also discussed. Finally, we consider the practical challenge of identifying when a person needs decision-making support.

      Keywords

      To read this article in full you will need to make a payment

      Purchase one-time access:

      Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
      One-time access price info
      • For academic or personal research use, select 'Academic and Personal'
      • For corporate R&D use, select 'Corporate R&D Professionals'

      Subscribe:

      Subscribe to Journal of the American Medical Directors Association
      Already a print subscriber? Claim online access
      Already an online subscriber? Sign in
      Institutional Access: Sign in to ScienceDirect

      References

      1. United Nations Convention on the Rights of Persons with Disabilities, opened for signature 30 March 2007, 999 UNTS 3. 2008 (Entered into force May 3)
        • United Nations Committee on the Rights of Persons with Disabilities
        General Comment No. 1 (2014) Article 12: Equal recognition before the law.
        2014
        • Ibrahim J.E.
        • Davis M.C.
        Impediments to applying the “dignity of risk” principle in residential aged care services.
        Australas J Ageing. 2013; 32: 188-193
        • Perske R.
        Dignity of risk and the mentally retarded.
        Ment Retard. 1972; 10: 24-27
      2. Guardianship and Administration Act (Vic). 2019
        • Burke S.
        Person-centered guardianship: how the rise of supported decision-making and person-centered services can help Olmstead’s promise get here faster.
        Mitchell Hamline L Rev. 2016; 42: 873-896
        • Day L.
        • Stark S.
        • Coscarelli J.
        Britney Spears quietly pushed for years to end her conservatorship.
        (New York Times. June 22, 2021. Updated October 1, 2021) (Accessed October 5, 2021)
        • Carney T.
        • Then S.N.
        • Bigby C.
        • et al.
        Realising “will, preferences and rights”: reconciling differences on best practice support for decision making?.
        Griffith L Rev. 2019; 28: 1-23
        • Szmukler G.
        "Capacity", "best interests", "will and preferences" and the UN Convention on the Rights of Persons with Disabilities.
        World Psychiatry. 2019; 18: 34-41
        • Szmukler G.
        The UN Convention on the Rights of Persons with Disabilities: ‘rights, will and preferences’ in relation to mental health disabilities.
        Int J Law Psychiatry. 2017; 54: 90-97
        • Rolison J.J.
        • Hanoch Y.
        • Freund A.M.
        Perception of risk for older adults: differences in evaluations for self versus others and across risk domains.
        Gerontology. 2019; 65: 547-559
        • Siegrist M.
        • Gutscher H.
        • Earle T.C.
        Perception of risk: the influence of general trust and general confidence.
        J Risk Res. 2005; 8: 145-156
        • Otani H.
        • Leonard S.D.
        • Ashford V.L.
        • et al.
        Age differences in perception of risk.
        Percept Mot Skills. 1992; 74: 587-594
        • Bonem E.M.
        • Ellsworth P.C.
        • Gonzalez R.
        Age differences in risk: perceptions, intentions and domains.
        J Behav Decis Mak. 2015; 28: 317-330
        • Finucane M.L.
        • Slovic P.
        • Mertz C.K.
        • et al.
        Gender, race and perceived risk: The ‘white male’ effect.
        Health Risk Soc. 2000; 2: 159-172
        • He L.
        • Park K.
        • Roehl W.S.
        Religion and perceived travel risks.
        J Travel Tour Mark. 2013; 30: 839-857
        • Noussair C.N.
        • Trautmann S.T.
        • van de Kuilen G.
        • Vellekoop N.
        Risk aversion and religion.
        J Risk Uncertain. 2013; 47: 165-183
        • Tenkorang E.Y.
        A multilevel path analysis of risk perception and risky sexual behaviour under the framework of the health belief model.
        J HIV AIDS Soc Serv. 2013; 12: 125-145
        • Peretti-Watel P.
        • Seror V.
        • Verger P.
        • et al.
        Smokers’ risk perception, socioeconomic status and source of information on cancer.
        Addict Behav. 2014; 39: 1304-1310
        • Weber E.U.
        • Blais A.R.
        • Betz N.E.
        A domain-specific risk-attitude scale: measuring risk perceptions and risk behaviors.
        J Behav Decis Mak. 2002; 15: 263-290
        • Siegrist M.
        • Arvai J.
        Risk perception: reflections on 40 years of research.
        Risk Analysis. 2020; 40: 2191-2206
      3. AK v NC, 32 Fam LR 16. 2002
      4. LG v Melbourne Health, VSC 183. 2019
        • Fried T.R.
        • Bradley E.H.
        • Towle V.R.
        • Allore H.
        Understanding the treatment preferences of seriously ill patients.
        N Engl J Med. 2002; 346: 1061-1066
        • Fried T.R.
        • Byers A.L.
        • Gallo W.T.
        • et al.
        Prospective study of health status preferences and changes in preferences over time in older adults.
        Arch Intern Med. 2006; 166: 890-895
        • Ibrahim J.E.
        • MacPhail A.
        • Winbolt M.
        • Grano P.
        Limitation of care orders in patients with a diagnosis of dementia.
        Resuscitation. 2016; 98: 118-124
        • McSwiggan S.
        • Meares S.
        • Porter M.
        Decision-making capacity evaluation in adult guardianship: a systematic review.
        Int Psychogeriatr. 2016; 28: 373-384
        • Lingler J.H.
        Ethical issues in distinguishing sexual activity from sexual maltreatment among women with dementia.
        J Elder Abuse Negl. 2003; 15: 85-102
        • Watson J.
        • Voss H.
        • Bloomer M.
        Placing the preferences of people with profound intellectual and multiple disabilities at the center of end-of-life decision making through storytelling.
        Res Pract Persons Severe Disabil. 2019; 44: 267-279
        • Office of the Public Advocate
        Supported decision-making in Victoria.
        (Accessed December 6, 2021)
        • Knoll L.J.
        • Leung J.T.
        • Foulkes L.
        • Blakemore S.J.
        Age-related differences in social influence on risk perception depend on the direction of influence.
        J Adolesc. 2017; 60: 53-63
        • Peisah C.
        • Sorinmade O.A.
        • Mitchell L.
        • Hertogh C.M.
        Decisional capacity: toward an inclusionary approach.
        Int Psychogeriatr. 2013; 25: 1571-1579
        • Skowron P.
        Giving substance to 'the best interpretation of will and preferences.’.
        Int J Law Psychiatry. 2019; 62: 125-134
        • Li Y.
        • Bugeja L.
        • Bhullar N.
        • Ibrahim J.E.
        Attitudes towards dignity of risk in older people: A survey following a short narrative film.
        Australas J Ageing. 2021; 40: 317-322
        • Office of the Public Advocate
        Flowchart helps identify when guardianship or administration is needed.
        (Accessed December 6, 2021)

      Related Podcast

      July 13, 2022

      July 2022 Issue: Psychosocial Issues in Care of Older Persons

      Host: Dr. Karl Steinberg. Featuring Dr. Philip Sloane, Dr. Mallory Brown; recorded on July 18, 2022

      Loading ...