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Abstract

Summary: Respect for patient autonomy is fundamental to participatory health models where treatment decisions are made through a partnership based on mutually acknowledged expertise between patient and provider. For patients subject to mental health law (MHL), however, patient autonomy can be overridden on grounds of incapacity to make treatment decisions. In such cases, providers become substitute decision makers and patients may be treated without their consent, presenting a challenge for participatory practices. This paper uses an ethical lens to focus on limits placed on health care decision making in the case of people governed by MHL, using Victoria, Australia as its example. It is argued that the first step must be to recognize loss of patient autonomy under MHL as an ethical problem worthy of attention. Only then can the impact this may have on patients and providers alike be appreciated and faced, and ethically grounded practices affirming patient autonomy, consent, and voluntariness be developed.
Keywords: Mental health, patient autonomy, shared decision making, participatory medicine, medical ethics.
Citation: Roper CE, Edan V. Autonomy in jeopardy: contrasting participatory health models with patient decision making under mental health law. J Participat Med. 2011 Sept 12; 3:e42.
Published: September 12, 2011.
Competing Interests: The authors have declared that no competing interests exist.

Introduction

Evidence of the benefits of patient involvement in health care decisions and management of health conditions has resulted in patient participation becoming a cornerstone of contemporary health care policy and practice.[1][2] Practitioners are expected to provide information to patients and lay out the risks and benefits of various treatments, so that patients can make informed decisions that suit their values, lifestyles, and preferences.[3] One widely known participatory health model is shared decision making, described as “a process by which a health care choice is made jointly by the practitioner and the patient.[4]” Such characterizations of the modern health care relationship assume autonomous decision making on the part of patients. Increasingly, expectations of patient-provider relationships are moving beyond patient involvement in decision making to partnerships in which the patient is an active, empowered, and equal member, and the expertise each participant brings to the medical encounter is mutually respected and valued. This type of partnership relies on a context of power sharing, relationship, and patient autonomy, and a power shift away from medical paternalism towards open negotiation.[5][6]

Expectations of health partnerships in which providers encourage patient participation in care have been carried over into mental health policy and law, but do not directly address the consequences and ethical significance of loss of patient autonomy to make health care decisions. The overlay of participatory frameworks onto mental health policy and law serves to mask significant ethical issues at stake for patients who are governed by MHL, where patients are not free to make autonomous health care decisions in a voluntary context. Providers may be placed in ethically challenging positions, attempting to establish partnerships and encourage patient participation on the one hand, yet working with a mandated treatment plan that the patient may not have agreed to, on the other.

Background

Mental Health Legislation

Most developed countries have provisions for involuntary psychiatric treatment through the enactment of MHL designed to govern both inpatients in hospitals and people living in the community. The broad purpose of MHL is twofold: to protect the community from harm, and to protect the person from harm or deterioration of their condition. However, there are
significant differences in the philosophical underpinnings of mental health laws between countries, and the existence of separate legislation governing people with psychiatric diagnoses continues to be the subject of considerable legal and ethical debate internationally.
One point of contention is the question of whether it is ethically justifiable to allow refusal of medical treatment but not be able to refuse psychiatric treatment,[7] leading to the following arguments: (1) that there should be a single capacity test for all;[8] (2) that existing guardianship laws are sufficient; and, (3) that separate MHL is discriminatory.[9] The second point of contention is the question of whether MHL should be invoked on the grounds that the patient is a danger to the community, or solely on the grounds of deterioration of a person’s condition, as a basis of the patient’s access to treatment.[10][11] Differences in legislation in various countries reflect different views on these questions. For example, in most US jurisdictions, MHL can be used to detain a person in hospital, but is not necessarily used to ensure treatment because the right to refuse treatment is upheld. Similarly, in a study comparing mental health law in Australian and Canadian jurisdictions it was found that Canadian law tends to be more rights focused, allowing for treatment refusal where Australian law is more treatment focused and does not.[12]

Case study: What is the situation of people governed by mental health law in Victoria, Australia?

New mental health laws have been proposed in Victoria. However, because they will not likely be in force until 2013, the current Mental Health Act Victoria, 1986 (MHAV) is used as the basis for this case study. Under the MHAV, a medical practitioner is required to formally recommend a person for involuntary treatment under the MHAV. The authorized psychiatrist then examines the person within 24 hours and determines if the order should be confirmed using five criteria which include that the involuntary treatment is necessary for the person’s safety, or the protection of the public, or to prevent deterioration of the person’s condition; and that the person has refused or is unable to consent to treatment. The MHAV states that:

If an involuntary patient refuses to consent to necessary treatment or is not capable of consenting to treatment for his or her mental illness consent in writing may be given by the authorised psychiatrist.[13]

This provision is the mechanism for the psychiatrist becoming the substitute decision maker and highlights the displacement of the role of consent under the MHAV. Because the MHAV specifies treatment refusal as grounds for substitute decision making, in practice, a person could be determined as having capacity, could disagree with the proposed treatment, could give reasons but still become subject to mental health law for the purposes of administration of treatment deemed necessary. If an inpatient does not comply with treatment they may be compelled through other means such as a different mode of delivery, for example, injection rather than oral medication.

In Victoria, involuntary treatment in the community occurs through the operation of Community Treatment Orders (CTOs). Victoria is the district with the highest rates of CTOs in the world.[14] According to the “Lacking Insight” report by the Mental Health Legal Centre Victoria, figures obtained from the Mental Health and Drugs Division, Department of Health Victoria, put the number of people on CTOs in Victoria during the period 2007-2008 at 5,473[15] in an estimated population of 5.31 million people.[16] CTOs operate for either twelve or six months. Therefore, infringements of patient autonomy are not limited to single encounters between provider and patient. Because there is no limit to the number of times a CTO may be extended[13] it is possible for a person to be subject to MHL over the course of their life. If the person is in the community on a CTO, and is refusing treatment deemed necessary, the CTO can be used to arrange that the person be admitted to hospital so that the necessary treatment can be administered.[13] If a patient subject to a CTO was initially determined not to have capacity to consent but then regained capacity, this would not automatically result in that person regaining a right to refuse treatment.[17]

Discussion

Contrasting Participatory Health Models with Decision Making Under the MHAV

There is an inherent inconsistency between the basis of participatory medicine and those underpinning MHL. Patient autonomy is assumed in participatory health models characterized by mutually respected expertise where patient empowerment and joint decision making are encouraged.[6] Taking Harris’ ethical perspective, being able to make one’s own health care decisions is a good thing in itself.[18] Likewise, to be self-determining and free to make choices has independent value and is definitive of personhood and dignity.[19][20][21] Respect for autonomy and self-determination mean that consent to treatment is necessary and people are therefore entitled to know the truth about their medical condition and have the right to accept, withdraw, or refuse treatment. In contrast, the MHAV allows substitute decision making using a “best interests” beneficent approach where treatments are given to patients without their consent. In bioethical terms,[19] the principle of beneficence (doing good) combined with the principle of justice (in this case, the right to access treatment) together provide the rationale for substitute decision making and involuntary treatment — thus outweighing patient decision making autonomy.

Both Australian mental health policy[22][23] and the MHAV[13] emphasize that every effort should be made to involve the person in the development of their treatment plan, in keeping with contemporary ideas about the importance of active patient decision making in health care. Providers are thus placed in ethically ambiguous positions when attempting to fulfill policy and legal directions about encouraging patient involvement in instances where the goal is compliance with mandated treatment to which the patient has not consented. In such cases, the imperative to involve patients in treatment conflicts with the determination that the patient lacks capacity to make decisions.

Topor and colleagues argue that psychiatric services are organized around illness models underpinned by a guiding belief that patients do not know what is in their own best interests.[23] This attitude serves to hamper the establishment of a culture of collaborative partnerships between patients and providers which are gaining credence in other health fields.. However, it could also be argued that MHL itself contributes to the formation of such attitudes since it is invoked precisely because the patient is thought to not know what is in their best interests. Unless these troubling ethical realities of current practice under MHL are faced, focusing on either care models or collaborative approaches will be insufficient to shift such attitudes and beliefs. Rather, the first step is to acknowledge that to be prevented from making treatment decisions has significant ethical consequences. This, together with a belief that one’s wellbeing is dependent on being able to make one’s own decisions should become the ethic to ground care. Service goals should be focused on creating the conditions that best support patient decision making. In this context, all practices would be directed toward avoiding substitute decision making and involuntary treatment.

Promoting Patient Self-Determination Under MHL

In the case of people subject to MHL, autonomy should be accorded intrinsic and independent value, since it is the ethical principle most at stake. In order to promote patient self-determination and affirm autonomous decision making, new practices are needed. First, capacity would be assumed so that any paternalistic intervention would need to establish which specific decisions were not able to be made and the reasons why. Any departure from respecting patient decision making would need to be considered an aberration rather than a norm. Practice would need to be directed toward facilitation of self-determination and providing opportunities for consent at all times. A transparency around these objectives could form the substance of therapeutic relationships. health care Service quality standards and professional guidelines would need to reflect directives aimed at taking responsibility for creating environments supportive of patient decision making.

Providers would need to clearly understand their roles as substitute decision makers and learn to be transparent about and accountable for the statutory powers conferred on them by the state.
For example, Katz proposes restoration of autonomy “prior to the act of healing by not treating patients as children but as adults whose capacity for remaining authors of their own fate can be sustained and nourished.[25]” Similarly, Brody proposes a conversation to determine capacity to consent to treatment.[26] The conversation is designed to encourage participation, render clinical thinking transparent to the patient and tailor information to the individual. The model requires clinical skills such as sharing one’s thought processes; encouraging the patient to ask questions; and finding out how much the person wants to participate.

Conclusions

Recognizing that loss of patient autonomy under MHL is ethically serious is the right place to start, but important questions remain: how competent are we at providing the contexts in which all people can be supported to make their own health care decisions? Can laws, social institutions, health services, and providers develop the necessary conditions for free and voluntary health care decision making for all persons? The freedom to make our own health care decisions should not merely depend upon whether or not individuals are competent to do so. To have an overarching focus on creating decision-making opportunities for all adult patients must be an ethical imperative. More empirical and theoretical ethical research is urgently needed to inform the development of such policies, environments, and practices that would affirm autonomy in the lives of people governed by MHL.

References

  1. Duncan E, Best C, Hagen S. Shared decision making interventions for people with mental health conditions. Cochrane Database of Systematic Reviews. 2010:1. Art. No.: CD007297.
  2. Elwyn G, Laitner S, Coulter A, Walker E, Watson P, Thomson R. Implementing Shared Decision Making in the NHS. BMJ. 2010;341:971-975.
  3. Charles C, Gafni A, Whelan T. Decision-making in the physician-patient encounter: revisiting the shared treatment decision-making model. Soc Sci & Med. 1999;49(5):651-661.
  4. Légaré F, Ratté S, Stacey D, Kryworuchko J, Gravel K, Graham ID, Turcotte S. Interventions for improving the adoption of shared decision making by health care professionals. Cochrane Database of Systematic Reviews. 2010;5. Art. No.: CD006732.
  5. Hook ML. Partnering with patients – a concept ready for action. J Adv Nurs. 2006;56(2):133-143.
  6. Taylor K. Paternalism, participation and partnership – the evolution of patient centredness in the consultation. Pt Ed & Couns. 2009;74:150-155.
  7. Richardson G. Balancing autonomy and risk: A failure of nerve in England and Wales? Int J Law & Psych. 2006;30:71–80.
  8. Dawson J, Szmukler G. Fusion of mental health and incapacity legislation. Br J Psych. 2006;188(6):504-509.
  9. Rosenman S, Mental health law, an idea whose time has passed? Aust & NZ J Psych. 1994; 28560-565.
  10. Lawton-Smith S, Dawson J, Burns T. Community treatment orders are not a good thing. Br J Psych. 2008;193:96-100.
  11. Ryan CJ. One flu over the cuckoo’s nest: comparing legislated coercive treatment for mental illness with that for other illness. J Bioeth Inq. 2011; 8(1): 87-93-93.
  12. Gray JE, McSherry BM, O’Reilly RL, Weller PJ. Australian and Canadian mental health acts compared. Aust and NZ Journ Psych. 2010;44(12):1126-1131.
  13. Mental Health Act Victoria,1986. Available at: http://www.legislation.vic.gov.au/Domino/Web_Notes/LDMS/PubLawToday.nsf/2184e627479f8392ca256da50082bf3e/4449EE50040FC783CA25730600085CEF/$FILE/86-59a092.pdf Accessed June 22, 2011.
  14. Burns T, Dawson J. Community treatment orders: how ethical without experimental evidence? [editorial]. Psych Med. 2009; 39(10):583-1586.
  15. Topp V, Thomas M, Ingvarson M. Lacking Insight: Involuntary Patient Experience of the Victorian Mental Health Review Board. 2008. Available at:
    http://www.communitylaw.org.au/mentalhealth/cb_pages/images/Lacking_Insight.pdf. Accessed August 13, 2011.
  16. Australian Bureau of Statistics. Available at: http://www.abs.gov.au/AUSSTATS/abs@.nsf/allprimarymainfeatures/A3D845ADEFAFBFA7CA25757C00137633?opendocument. Accessed June 22, 2011.
  17. Dawson J. Fault-lines in community treatment order legislation. Int J Law& Psy. 2006;29: 482–494.
  18. Harris J. The Value of Life. London: Routledge and Kegan Paul;1985:192-205.
  19. Beauchamp TL. The “four principles” approach to health care ethics. In: Ashcroft RE, Dawson A, Draper H, McMillan JR, eds. Principles of Health Care Ethics. 2nd ed. Chichester UK: Wiley; 2007:3-10.
  20. Goldman A. The refutation of medical paternalism. In: Arras JD, Steinbock B, eds. Ethical Issues in Modern Medicine. 5th ed. Mountain View, CA: Mayfield Publishing Co; 1999:59-67.
  21. Radden J. Forced Medication, Patients’ rights and values conflicts. Psych, Psychol & Law. 2003;10;1-11.
  22. National Mental Health Policy, 2008. Commonwealth of Australia. Available at:
    http://www.health.gov.au/internet/main/publishing.nsf/content/532CBE92A8323E03CA25756E001203BF/$File/finpol08.pdf Accessed June 22, 2011.
  23. National Standards for Mental Health Services, 2010. Commonwealth of Australia. Available at: http://www.health.gov.au/internet/main/publishing.nsf/content/DA71C0838BA6411BCA2577A0001AAC32/$File/servst10v2.pdf. Accessed June 22, 2011.
  24. Topor A, Borg M, Di Girolamo S, Davidson L. Not just an individual journey: social aspects of recovery. Int J Soc Psych. 2011;57:90-99.
  25. Katz J. Informed consent — must it remain a fairy tale? In: Arras JD, Steinbock B, eds. Ethical Issues in Modern Medicine. 5th ed. Mountain View, CA: Mayfield Publishing Co; 1999:86-94.
  26. Brody H. Transparency: Informed consent in primary care. In: Arras JD, Steinbock B, eds. Ethical Issues in Modern Medicine. 5th ed. Mountain View, CA: Mayfield Publishing Co; 1999:94-100.

Copyright: © 2011 Cath E. Roper and Vrinda Edan. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the authors, with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.

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