Disability Federation of Ireland Submission to The Department of Health on the Draft General Scheme for Advance Healthcare Directives for Incorporation into the Assisted Decision Making (Capacity) Bill 2013

March 2014

Introduction

The Disability Federation of Ireland is the national support organisation for voluntary disability organisations (129 members) in Ireland who provide services to people with disabilities and disabling conditions:

  • Hidden
  • Intellectual
  • Mental Health
  • Physical
  • Sensory
  • Emotional
  • Neurological

DFI works to ensure that Irish society is fully inclusive of people with disabilities and disabling conditions so that they can exercise fully their civil, social and human rights.  In pursuit of this vision DFI acts as an advocate for the voluntary disability sector and supports organisations to further enable people with disabilities. 

DFI welcomes the opportunity to submit its observations on the Draft General Scheme for Advance Healthcare Directives for Incorporation into the Assisted Decision-Making (Capacity) Bill 2013.  The proposed legislation provides a much needed legal framework to ensure that instructions given or wishes made by an individual who becomes incapacitated are followed.  In addition, the inclusion of provisions for advance care directives in this Bill was a key recommendation of the Law Reform Commission and was accepted by the Oireachtas Joint Committee on Justice, Equality and Defence.  DFI believe that the Advanced Healthcare Directives will further progress Ireland’s ratification of the UN Convention on the Rights of People with Disabilities and are a necessary addition to the Assisted Decision-Making (Capacity) Bill 2013.

The UN Convention on the Rights of People with Disabilities

The human rights approach to disability outlined in the UN Convention on the Rights of Persons with Disabilities (UNCRPD) is broadly recognised as the overarching framework against which all policy and legislation should be benchmarked.  Ireland is a signatory of the UNCRPD since 2007 and it is expected to be fully ratified later this year.  The Advanced Healthcare Directives will significantly advance the rights of people during what can only be described as the most vulnerable time in their lives.  By enabling people to express their preferences and plan for their future care, it provides people with a voice in the event of their incapacity.  This is pertinent across the spectrum of disability particularly where a condition is progressive.  Therefore, to ensure that the all aspects of the legislation are fully compliant with the UNCRPD, the following Articles must be considered:

Article 3          General Principles

Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons (Article 3 a)

Article 12        Equal recognition before the Law

State Parties shall recognise that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life (Article 12.2).

Article 25        Health

State Parties shall require health professionals to provide care of the same quality to persons with disabilities as to others, including on the basis of free and informed consent by, inter alia, raising awareness of the human rights, dignity, autonomy and needs of persons with disabilities through training and the promulgation of ethical standards for public and private health care (Article 25 d).

DFI Commentary on the Proposed Advanced Healthcare Directives

The following concerns and comments are highlighted and need to be considered:

  • DFI is concerned that the proposed Advanced Healthcare Directive is not applicable to the administration of basic care.  Preference on how personal and basic care is provided is central to the ethos of independent living and is important in terms of respecting the autonomy and dignity of the person with a disability. 
     
  • The legislation should be clear on whether an Advanced Healthcare Directive has precedent over a Healthcare Power of Attorney, should a conflict occur.
     
  • The role of the family in end-of-life decisions must be clear to medical practitioners, particularly where the family is opposed to what is declared in the advance directive.  For instance international evidence indicates that doctors will sometimes postpone honouring a living will if the family is in opposition. Where this has been the case, doctors report that they do so out of compassion for the family, giving them a few extra days to help them accept the inevitable. Doctors also report concerns for malpractice claims if they terminate life support systems too early against family wishes.  This needs to be clearly addressed through the legislation[1].
     
  • The inclusion of advance directives in mental health settings is part of an international impetus towards the recognition and entrenchment of human rights for people with mental illness.  This is particularly relevant to individuals who may at times be incapacitated by a mental health crisis.   The extension of the Advanced Healthcare Directives to include mental health will enhance autonomy and are fundamental to the right to self-determination, equal dignity and freedom to make decisions laid out in the UN Convention on the Rights of People with Disabilities.  However, it is important that the individual preferences over all treatment options be extended to include people involuntary detained under the Mental Health Act.  Only then can their rights under the UNCRPD be truly respected. 
     
  • DFI is concerned that the Scheme is based on ‘having’ or ‘lacking capacity’ and does not recognise universal legal capacity for all
     
  • The definition of ‘emergency situations’ should be clearly defined.
     
  • There should be an onus on health professionals to check as to whether an individual has an Advanced Healthcare Directive.  Penalties should exist in the situation where it is ignored or where appropriate steps are not taken to check whether one exists. 
     
  • The implementation of Advance healthcare directives should be carefully monitored and an appropriate system of regulation and redress be introduced. This should be applicable for both mental and physical health.

Conclusion

Advance healthcare directives apply in different situation including in the provision of treatment or continuation of care for those with chronic medical conditions which are not life threatening; for those who wish to refuse certain treatments; and for those who wish to express their preferences in the context of end-of-life.  Advanced healthcare directive are therefore very relevant to people with disabilities, those with chronic health conditions or mental ill-health and DFI welcome the fact that they will now be put on a legislative footing.  At the same time we are disappointed that there is a blanket exclusion of people who are involuntary detained under the Mental Health Act.  We believe that in order for the UNCRPD to be fully realised all people should have their treatment preferences considered. 

The continuity of care in the case where the patient loses capacity, as well as end of life treatment must be considered as public health matters that require all aspects of public health planning to be involved, including the recognition of the inevitability of death and loss, cultural sensitivity, equality of access for all, sustainability and utilising a population health approach[2].  In conclusion, people should have their wishes respected and accommodated in the event of an accident or other emergency, serious illness or death – when they are unable to speak for themselves.

About the Disability Federation of Ireland

The Disability Federation of Ireland (DFI) represents the interests and the expectations of people with disabilities to be fully included in Irish society.  It comprises organisations that represent and support people with disabilities and disabling conditions.             

The vision of DFI is that Irish society is fully inclusive of people with disabilities and disabling conditions so that they can exercise their full civil, economic, social and human rights and that they are enabled to reach their full potential in life.  DFI’s mission is to act as an advocate for the full and equal inclusion of people with disabilities and disabling conditions in all aspects of their lives. 

There are over 120 organisations within membership or as associates of DFI.  DFI also works with a growing number of organisations and groups around the country that have a significant disability interest, mainly from the statutory and voluntary sectors.

DFI provides:

  • Information
  • Training and Support
  • Networking
  • Advocacy and Representation
  • Research and Policy Development / Implementation
  • Organisation and Management Development

DFI works on the basis that disability is a societal issue and so works with Government, and across the social and economic strands and interests of society.

Disability Federation of Ireland, Fumbally Court, Fumbally Lane, Dublin 8

Tel: 01-4547978, Fax: 01-4547981

Email: info@disability-federation.ie  Web: www.disability-federation.ie

Union of Voluntary Organisations of People with Disabilities trading as The Disability Federation of Ireland is a company limited by guarantee not having share capital, registered in Dublin. Registered No. 140948, CHY No 6177

Representing the interests and expectations of people with disabilities to be fully included.

Comprising organisations that represent and support people with disabilities.

 


[1] Schwab, Carol. 2003. Editor's Corner: Ethical issues of advance directives. The Forum for Family and Consumer Issues 8(1).

[2] Law Reform Commission (2009) Bioethics: Advance Care Directives Report. 

 

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