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The Convention on the Rights of Persons with Disabilities (CRPD) was adopted by the United Nations (UN) General Assembly on 13 December 2006. Recognising that persons with experience of disability were not being accorded their rights on an equal basis, its goal was to clarify how equality of rights was to be secured.[[1]] As such, it provides a comprehensive international framework to guide states as to what the human rights and full inclusion and participation of people with experience of disability entails, for which political, legal, social and physical measures will be needed for implementation.

As of January 2021, 181 states plus the European Union have agreed to be bound by the CRPD. These parties to the Convention are required to promote, protect and ensure the full enjoyment of human rights by persons with disabilities, including full equality under the law. New Zealand ratified the CRPD on 25 September 2008, and as such it should guide how we act in the medical arena when working with those with disability, including persons engaged with mental health services and those experiencing mental distress. Implementation of the CRPD is supervised by an expert CRPD Committee, which recommends steps to ensure compliance in practice. Key to this is the transition from substituted decision-making to supported decision-making.

Does New Zealand adhere to the CRPD?

Although the CRPD has been widely adopted, its good intentions are insufficient for change.[[2]] New Zealand’s reporting to the CRPD Committee has identified a number of limitations and omissions in its law and practice in regards to compliance with the CRPD. One of the most significant areas of non-compliance is the failure to implement supported decision-making in any part of New Zealand’s healthcare system, despite being bound to do so for more than a decade. New Zealand is not alone—no state party reviewed to date has been found fully compliant—but there is clear room for improvement, including by supporting those who experience psychological distress to participate in their medical care. Supported decision-making is significantly different from substituted decision-making. For the latter, which is the common model, if a person fails in one of the domains of capacity—to understand, retain or weigh information, or to communicate a decision—clinicians take over responsibility for decision-making. The failure is usually decided by the treating clinician.[[3]] Substituted decision-making is disempowering. It often leads to an erroneous conflation between difficulties in making decisions (mental capacity) and the right to make decisions and exercise rights (legal capacity). Supported decision-making, with its focus on understanding the will and preferences of people with impairments, emphasises the full enjoyment of rights and so maximises individual empowerment. It also recognises the social elements of disability, by having a focus not on a diagnosis but on how society responds. For example, a patient in psychosocial distress, brought on by low mood and suicidality, may struggle to make decisions. Substitute decision-making may consider her to fail to ‘weigh in the balance’ and dictate an acute treatment response, with the shadow of detention under mental health legislation if the response is not agreed to. This is vastly different from supporting her to understand her options, consider the social supports available to her and contemplate a variety of treatment decisions for her to choose from. Although examples such as this are obvious in a mental health arena, they are present in many specialties such as emergency medicine, old-age care and pediatrics, although the content of the support will differ by specialty and disability.

Can a supported decision-making theory led to practice change?

The core ethos of the CRPD is to shift away from a traditional model of disability, one whereby persons with disabilities are viewed as ‘objects’ of charity, medical treatment and social protection. This denies people with disabilities “their full and effective participation in society on an equal basis with others”.[[4]] The aim is to move towards a human rights model built on the understanding that disability is the interaction between the individual and their external environment (composed of attitudinal and structural barriers). Part of the difficulty of switching from models of disability based on biomedicine to a human rights model is the variable nature of ‘disability’ that cannot be rigid in definition but rather depends on the predominant environment. It is this conceptualisation of disability that will be new for many doctors and may lead to a tension as to how to re-orient services to meet this need while delivering risk-averse, socially acceptable care. Legal amendments in other jurisdictions (such as many Australian states) have not led to this change.[[5]] Increasingly, it is becoming apparent that education in medical professionals’ training and careers may be needed to facilitate changes in perception in relation to supported decision-making.[[6]]

What can we do to encourage medical school student and trainee doctor training?

In order to facilitate this paradigm shift, the World Health Organization (WHO) developed the comprehensive training modules QualityRights in 2010. The goal in creating such a programme was to provide a resource that was universally accessible and promotes the principles of the CRPD, but that also provides the nuanced information needed to guide mental health services through the changes necessary to be compliant with the CRPD. To enact true progress, the WHO identified that it was crucial that these resources are used to educate medical professionals to a high standard in their understanding of clinical practice that is CRPD compliant, both at an early stage in their training and also throughout their specialty training. Despite the promotion of this training material, a review of the available online curricula for the majority of medical schools in Australasia indicates that it has not been incorporated into education programmes. Hence it seems likely that the important concept and practice of supported decision-making has yet to be incorporated into medical school teaching, which is likely a necessary step in the development of change in clinical practice.

Concluding comments

Although state parties that have ratified the CRPD have demonstrated intent to support persons people with disability to make and manage their own medical decisions, the majority fail to comply with this commitment. The CPRD Committee’s ongoing review of state parties show efforts beyond ratification and legal change are needed to develop and roll out supported decision-making into standard clinical practice.  To this end a focus on medical professional education is required to help shift from traditional models of care to a human rights model of support. A clear commitment from deans of medical schools and directors of psychiatric training in particular is needed to move clinical practice more closely towards the goal of facilitating supported decision-making. We have a proud tradition of leading the field in many areas of equality and rights, including proposing the appointment of Sir Robert Martin to the CRPD Committee, the first person with an intellectual disability to be elected to a UN treaty body. We need to continue this tradition in our medical training.

To provide services in accord with the obligations of the CRPD, there needs to be significant advances in the teaching of disability rights in medical and psychiatric education. It is our word as medical professionals that are our bond to our patients. As the requirements of society shift, from a practice model of paternalism to one that encourages autonomy and empowers human rights,[[7]] so too does the teaching of medical students need to progress. We have a clear framework, guidelines and resources to support us to do this—now we, as a professional body, need to ensure those are utilised to address this currently unmet but critical area of medical education and development.

Summary

Abstract

Aim

Method

Results

Conclusion

Author Information

Dr James Cooney: Senior Psychiatry Registrar, Royal Australian and New Zealand College of Psychiatry. Dr Michael Daly: Senior Psychiatry Registrar, Royal Australian and New Zealand College of Psychiatry. Associate Professor Giles Newton-Howes: Department of Psychological Medicine, University of Otago, Wellington. Professor Kris Gledhill: Professor of Law, AUT Law School. Dr Sarah Gordon: Senior Lecturer – Service User Academic, Department of Psychological Medicine, University of Otago, Wellington.

Acknowledgements

Correspondence

Giles Newton-Howes, Department of Psychological Medicine, University of Otago, Wellington

Correspondence Email

giles.newton-howes@otago.ac.nz

Competing Interests

Nil.

1. SZMUKLER, G. 2015. UN CRPD: equal recognition before the law.  2, e29.

2. STAVERT, J. 2018. Paradigm Shift or Paradigm Paralysis? National Mental Health and Capacity Law and Implementing the CRPD in Scotland.  7, 26.

3. NEWTON-HOWES, G., PICKERING, N. & YOUNG, G. 2019. Authentic decision-making capacity in hard medical cases. , 1477750919876248.

4. Article 1 – Purpose | United Nations Enable [Internet]. Available from: https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/article-1-purpose.html

5. Personal correspondence, C Ryan

6. GORDON, S., ELLIS, P., GALLAGHER, P. & PURDIE, G. 2014. Service users teaching the recovery paradigm to final year medical students. A New Zealand approach. , 15.

7. BREEZE, J. 1998. Can paternalism be justified in mental health care?  28, 260-265.

For the PDF of this article,
contact nzmj@nzma.org.nz

View Article PDF

The Convention on the Rights of Persons with Disabilities (CRPD) was adopted by the United Nations (UN) General Assembly on 13 December 2006. Recognising that persons with experience of disability were not being accorded their rights on an equal basis, its goal was to clarify how equality of rights was to be secured.[[1]] As such, it provides a comprehensive international framework to guide states as to what the human rights and full inclusion and participation of people with experience of disability entails, for which political, legal, social and physical measures will be needed for implementation.

As of January 2021, 181 states plus the European Union have agreed to be bound by the CRPD. These parties to the Convention are required to promote, protect and ensure the full enjoyment of human rights by persons with disabilities, including full equality under the law. New Zealand ratified the CRPD on 25 September 2008, and as such it should guide how we act in the medical arena when working with those with disability, including persons engaged with mental health services and those experiencing mental distress. Implementation of the CRPD is supervised by an expert CRPD Committee, which recommends steps to ensure compliance in practice. Key to this is the transition from substituted decision-making to supported decision-making.

Does New Zealand adhere to the CRPD?

Although the CRPD has been widely adopted, its good intentions are insufficient for change.[[2]] New Zealand’s reporting to the CRPD Committee has identified a number of limitations and omissions in its law and practice in regards to compliance with the CRPD. One of the most significant areas of non-compliance is the failure to implement supported decision-making in any part of New Zealand’s healthcare system, despite being bound to do so for more than a decade. New Zealand is not alone—no state party reviewed to date has been found fully compliant—but there is clear room for improvement, including by supporting those who experience psychological distress to participate in their medical care. Supported decision-making is significantly different from substituted decision-making. For the latter, which is the common model, if a person fails in one of the domains of capacity—to understand, retain or weigh information, or to communicate a decision—clinicians take over responsibility for decision-making. The failure is usually decided by the treating clinician.[[3]] Substituted decision-making is disempowering. It often leads to an erroneous conflation between difficulties in making decisions (mental capacity) and the right to make decisions and exercise rights (legal capacity). Supported decision-making, with its focus on understanding the will and preferences of people with impairments, emphasises the full enjoyment of rights and so maximises individual empowerment. It also recognises the social elements of disability, by having a focus not on a diagnosis but on how society responds. For example, a patient in psychosocial distress, brought on by low mood and suicidality, may struggle to make decisions. Substitute decision-making may consider her to fail to ‘weigh in the balance’ and dictate an acute treatment response, with the shadow of detention under mental health legislation if the response is not agreed to. This is vastly different from supporting her to understand her options, consider the social supports available to her and contemplate a variety of treatment decisions for her to choose from. Although examples such as this are obvious in a mental health arena, they are present in many specialties such as emergency medicine, old-age care and pediatrics, although the content of the support will differ by specialty and disability.

Can a supported decision-making theory led to practice change?

The core ethos of the CRPD is to shift away from a traditional model of disability, one whereby persons with disabilities are viewed as ‘objects’ of charity, medical treatment and social protection. This denies people with disabilities “their full and effective participation in society on an equal basis with others”.[[4]] The aim is to move towards a human rights model built on the understanding that disability is the interaction between the individual and their external environment (composed of attitudinal and structural barriers). Part of the difficulty of switching from models of disability based on biomedicine to a human rights model is the variable nature of ‘disability’ that cannot be rigid in definition but rather depends on the predominant environment. It is this conceptualisation of disability that will be new for many doctors and may lead to a tension as to how to re-orient services to meet this need while delivering risk-averse, socially acceptable care. Legal amendments in other jurisdictions (such as many Australian states) have not led to this change.[[5]] Increasingly, it is becoming apparent that education in medical professionals’ training and careers may be needed to facilitate changes in perception in relation to supported decision-making.[[6]]

What can we do to encourage medical school student and trainee doctor training?

In order to facilitate this paradigm shift, the World Health Organization (WHO) developed the comprehensive training modules QualityRights in 2010. The goal in creating such a programme was to provide a resource that was universally accessible and promotes the principles of the CRPD, but that also provides the nuanced information needed to guide mental health services through the changes necessary to be compliant with the CRPD. To enact true progress, the WHO identified that it was crucial that these resources are used to educate medical professionals to a high standard in their understanding of clinical practice that is CRPD compliant, both at an early stage in their training and also throughout their specialty training. Despite the promotion of this training material, a review of the available online curricula for the majority of medical schools in Australasia indicates that it has not been incorporated into education programmes. Hence it seems likely that the important concept and practice of supported decision-making has yet to be incorporated into medical school teaching, which is likely a necessary step in the development of change in clinical practice.

Concluding comments

Although state parties that have ratified the CRPD have demonstrated intent to support persons people with disability to make and manage their own medical decisions, the majority fail to comply with this commitment. The CPRD Committee’s ongoing review of state parties show efforts beyond ratification and legal change are needed to develop and roll out supported decision-making into standard clinical practice.  To this end a focus on medical professional education is required to help shift from traditional models of care to a human rights model of support. A clear commitment from deans of medical schools and directors of psychiatric training in particular is needed to move clinical practice more closely towards the goal of facilitating supported decision-making. We have a proud tradition of leading the field in many areas of equality and rights, including proposing the appointment of Sir Robert Martin to the CRPD Committee, the first person with an intellectual disability to be elected to a UN treaty body. We need to continue this tradition in our medical training.

To provide services in accord with the obligations of the CRPD, there needs to be significant advances in the teaching of disability rights in medical and psychiatric education. It is our word as medical professionals that are our bond to our patients. As the requirements of society shift, from a practice model of paternalism to one that encourages autonomy and empowers human rights,[[7]] so too does the teaching of medical students need to progress. We have a clear framework, guidelines and resources to support us to do this—now we, as a professional body, need to ensure those are utilised to address this currently unmet but critical area of medical education and development.

Summary

Abstract

Aim

Method

Results

Conclusion

Author Information

Dr James Cooney: Senior Psychiatry Registrar, Royal Australian and New Zealand College of Psychiatry. Dr Michael Daly: Senior Psychiatry Registrar, Royal Australian and New Zealand College of Psychiatry. Associate Professor Giles Newton-Howes: Department of Psychological Medicine, University of Otago, Wellington. Professor Kris Gledhill: Professor of Law, AUT Law School. Dr Sarah Gordon: Senior Lecturer – Service User Academic, Department of Psychological Medicine, University of Otago, Wellington.

Acknowledgements

Correspondence

Giles Newton-Howes, Department of Psychological Medicine, University of Otago, Wellington

Correspondence Email

giles.newton-howes@otago.ac.nz

Competing Interests

Nil.

1. SZMUKLER, G. 2015. UN CRPD: equal recognition before the law.  2, e29.

2. STAVERT, J. 2018. Paradigm Shift or Paradigm Paralysis? National Mental Health and Capacity Law and Implementing the CRPD in Scotland.  7, 26.

3. NEWTON-HOWES, G., PICKERING, N. & YOUNG, G. 2019. Authentic decision-making capacity in hard medical cases. , 1477750919876248.

4. Article 1 – Purpose | United Nations Enable [Internet]. Available from: https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/article-1-purpose.html

5. Personal correspondence, C Ryan

6. GORDON, S., ELLIS, P., GALLAGHER, P. & PURDIE, G. 2014. Service users teaching the recovery paradigm to final year medical students. A New Zealand approach. , 15.

7. BREEZE, J. 1998. Can paternalism be justified in mental health care?  28, 260-265.

For the PDF of this article,
contact nzmj@nzma.org.nz

View Article PDF

The Convention on the Rights of Persons with Disabilities (CRPD) was adopted by the United Nations (UN) General Assembly on 13 December 2006. Recognising that persons with experience of disability were not being accorded their rights on an equal basis, its goal was to clarify how equality of rights was to be secured.[[1]] As such, it provides a comprehensive international framework to guide states as to what the human rights and full inclusion and participation of people with experience of disability entails, for which political, legal, social and physical measures will be needed for implementation.

As of January 2021, 181 states plus the European Union have agreed to be bound by the CRPD. These parties to the Convention are required to promote, protect and ensure the full enjoyment of human rights by persons with disabilities, including full equality under the law. New Zealand ratified the CRPD on 25 September 2008, and as such it should guide how we act in the medical arena when working with those with disability, including persons engaged with mental health services and those experiencing mental distress. Implementation of the CRPD is supervised by an expert CRPD Committee, which recommends steps to ensure compliance in practice. Key to this is the transition from substituted decision-making to supported decision-making.

Does New Zealand adhere to the CRPD?

Although the CRPD has been widely adopted, its good intentions are insufficient for change.[[2]] New Zealand’s reporting to the CRPD Committee has identified a number of limitations and omissions in its law and practice in regards to compliance with the CRPD. One of the most significant areas of non-compliance is the failure to implement supported decision-making in any part of New Zealand’s healthcare system, despite being bound to do so for more than a decade. New Zealand is not alone—no state party reviewed to date has been found fully compliant—but there is clear room for improvement, including by supporting those who experience psychological distress to participate in their medical care. Supported decision-making is significantly different from substituted decision-making. For the latter, which is the common model, if a person fails in one of the domains of capacity—to understand, retain or weigh information, or to communicate a decision—clinicians take over responsibility for decision-making. The failure is usually decided by the treating clinician.[[3]] Substituted decision-making is disempowering. It often leads to an erroneous conflation between difficulties in making decisions (mental capacity) and the right to make decisions and exercise rights (legal capacity). Supported decision-making, with its focus on understanding the will and preferences of people with impairments, emphasises the full enjoyment of rights and so maximises individual empowerment. It also recognises the social elements of disability, by having a focus not on a diagnosis but on how society responds. For example, a patient in psychosocial distress, brought on by low mood and suicidality, may struggle to make decisions. Substitute decision-making may consider her to fail to ‘weigh in the balance’ and dictate an acute treatment response, with the shadow of detention under mental health legislation if the response is not agreed to. This is vastly different from supporting her to understand her options, consider the social supports available to her and contemplate a variety of treatment decisions for her to choose from. Although examples such as this are obvious in a mental health arena, they are present in many specialties such as emergency medicine, old-age care and pediatrics, although the content of the support will differ by specialty and disability.

Can a supported decision-making theory led to practice change?

The core ethos of the CRPD is to shift away from a traditional model of disability, one whereby persons with disabilities are viewed as ‘objects’ of charity, medical treatment and social protection. This denies people with disabilities “their full and effective participation in society on an equal basis with others”.[[4]] The aim is to move towards a human rights model built on the understanding that disability is the interaction between the individual and their external environment (composed of attitudinal and structural barriers). Part of the difficulty of switching from models of disability based on biomedicine to a human rights model is the variable nature of ‘disability’ that cannot be rigid in definition but rather depends on the predominant environment. It is this conceptualisation of disability that will be new for many doctors and may lead to a tension as to how to re-orient services to meet this need while delivering risk-averse, socially acceptable care. Legal amendments in other jurisdictions (such as many Australian states) have not led to this change.[[5]] Increasingly, it is becoming apparent that education in medical professionals’ training and careers may be needed to facilitate changes in perception in relation to supported decision-making.[[6]]

What can we do to encourage medical school student and trainee doctor training?

In order to facilitate this paradigm shift, the World Health Organization (WHO) developed the comprehensive training modules QualityRights in 2010. The goal in creating such a programme was to provide a resource that was universally accessible and promotes the principles of the CRPD, but that also provides the nuanced information needed to guide mental health services through the changes necessary to be compliant with the CRPD. To enact true progress, the WHO identified that it was crucial that these resources are used to educate medical professionals to a high standard in their understanding of clinical practice that is CRPD compliant, both at an early stage in their training and also throughout their specialty training. Despite the promotion of this training material, a review of the available online curricula for the majority of medical schools in Australasia indicates that it has not been incorporated into education programmes. Hence it seems likely that the important concept and practice of supported decision-making has yet to be incorporated into medical school teaching, which is likely a necessary step in the development of change in clinical practice.

Concluding comments

Although state parties that have ratified the CRPD have demonstrated intent to support persons people with disability to make and manage their own medical decisions, the majority fail to comply with this commitment. The CPRD Committee’s ongoing review of state parties show efforts beyond ratification and legal change are needed to develop and roll out supported decision-making into standard clinical practice.  To this end a focus on medical professional education is required to help shift from traditional models of care to a human rights model of support. A clear commitment from deans of medical schools and directors of psychiatric training in particular is needed to move clinical practice more closely towards the goal of facilitating supported decision-making. We have a proud tradition of leading the field in many areas of equality and rights, including proposing the appointment of Sir Robert Martin to the CRPD Committee, the first person with an intellectual disability to be elected to a UN treaty body. We need to continue this tradition in our medical training.

To provide services in accord with the obligations of the CRPD, there needs to be significant advances in the teaching of disability rights in medical and psychiatric education. It is our word as medical professionals that are our bond to our patients. As the requirements of society shift, from a practice model of paternalism to one that encourages autonomy and empowers human rights,[[7]] so too does the teaching of medical students need to progress. We have a clear framework, guidelines and resources to support us to do this—now we, as a professional body, need to ensure those are utilised to address this currently unmet but critical area of medical education and development.

Summary

Abstract

Aim

Method

Results

Conclusion

Author Information

Dr James Cooney: Senior Psychiatry Registrar, Royal Australian and New Zealand College of Psychiatry. Dr Michael Daly: Senior Psychiatry Registrar, Royal Australian and New Zealand College of Psychiatry. Associate Professor Giles Newton-Howes: Department of Psychological Medicine, University of Otago, Wellington. Professor Kris Gledhill: Professor of Law, AUT Law School. Dr Sarah Gordon: Senior Lecturer – Service User Academic, Department of Psychological Medicine, University of Otago, Wellington.

Acknowledgements

Correspondence

Giles Newton-Howes, Department of Psychological Medicine, University of Otago, Wellington

Correspondence Email

giles.newton-howes@otago.ac.nz

Competing Interests

Nil.

1. SZMUKLER, G. 2015. UN CRPD: equal recognition before the law.  2, e29.

2. STAVERT, J. 2018. Paradigm Shift or Paradigm Paralysis? National Mental Health and Capacity Law and Implementing the CRPD in Scotland.  7, 26.

3. NEWTON-HOWES, G., PICKERING, N. & YOUNG, G. 2019. Authentic decision-making capacity in hard medical cases. , 1477750919876248.

4. Article 1 – Purpose | United Nations Enable [Internet]. Available from: https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/article-1-purpose.html

5. Personal correspondence, C Ryan

6. GORDON, S., ELLIS, P., GALLAGHER, P. & PURDIE, G. 2014. Service users teaching the recovery paradigm to final year medical students. A New Zealand approach. , 15.

7. BREEZE, J. 1998. Can paternalism be justified in mental health care?  28, 260-265.

Contact diana@nzma.org.nz
for the PDF of this article

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