Draft ‘Dying with Dignity’ Law Needs Significant Change to Be in Line with Essential Human Rights and Equality Protections.

Any law governing physician-assisted dying must be informed by human rights and equality standards, including close consultation with at risk groups, the Irish Human Rights and Equality Commission (the Commission) has told Oireachtas Members.

The Commission has today published its analysis and recommendations to the Oireachtas Committee on Justice on the Dying with Dignity Bill 2020. The Commission recognises the difficulties experienced by people living with a life-limiting illness who can face significant suffering, especially where they fear a long and protracted death, and accordingly the desire of the Oireachtas to move forward on legislation of this kind.

Legislating for physician-assisted dying engages several rights including the right to life, respect for human dignity, personal autonomy and the protection of particular at risk groups, in particular disabled people, people with life-limiting illnesses, and older people.

The Commission has published these legislative observations and 19 recommendations (see editor’s note for summary) in line with its statutory mandate to keep under review the adequacy and effectiveness of law and practice in the State relating to the protection of human rights and equality, and to make recommendations to strengthen and uphold human rights and equality in the State.

The Commission sets out how the Dying with Dignity Bill 2020 as currently drafted falls short in ensuring that adequate safeguards are in place to protect the right to life, especially where particular groups may be placed at a heightened risk. The submission also sets out that:

• Robust and adequate safeguards are vital. Prior to the passing of any legislation of this kind the State must ensure that a robust legal and regulatory framework is in place to ensure that particular groups are not placed at risk. The relevant human rights considerations include:
  • The positive obligation to protect the right to life;
  • The right to health and palliative care;
  • And the right to participate in decision-making.
• Achieving a dignified and peaceful end of life engages a range of human rights and equality obligations. This would include the palliative care needs of people at the end of their life.  If the purpose of the Bill as drafted is to achieve “dying with dignity” then the Bill would need to be substantively revised to take account of the palliative care needs and wishes of people at the end of life.
• Assisted Decision Making. The Bill as drafted does not clearly reflect a supported decision making model as is required under the UN Convention on the Rights of Persons with Disabilities (UNCRPD) . This failing is exacerbated by the fact the Assisted Decision Making Act has not yet been fully commenced. Choice and decision-making are inseparably linked to a person’s dignity and personal autonomy. The purpose of the Bill is to facilitate choice on end of life issues. Therefore, introducing legislation without first addressing the wider legal and procedural issues relating to capacity will likely impact negatively on disabled people.
• Adequacy of current health and social care services. The Bill must also be examined against the adequacy of current health and social care services, of which there are significant gaps and shortcomings in services and supports for people with disabilities, people with life-limiting illness and older people. The Commission recommends that the Bill be accompanied by additional law that provides for basic legal rights to independent living and palliative health care.

The legal situation in other countries.  The Commission sets out that a number of jurisdictions globally have legislated to provide for assisted dying, with growing momentum for legal reform. There exists two dominant models identified being those of the U.S. state of Oregon and the ‘Benelux Model’, used in Belgium, Luxembourg and the Netherlands. Countries in which legislation varies from these two models are Colombia, Canada, Switzerland and New Zealand.

Sinéad Gibney, Chief Commissioner of the Irish Human Rights and Equality Commission stated:
“Where assisted dying is discussed in the public sphere, any debate must have the utmost regard for the complexity of the sensitive and difficult issues being considered. 

“This Bill being considered by the Oireachtas specifically addresses physician-assisted dying. This is one important aspect of a much broader concept, dying with dignity, which is about choice and achieving a dignified and peaceful end of life, including palliative care needs at end of life. 

“Legislating for physician-assisted dying engages several rights, including; the right to life, respect for human dignity, personal autonomy and the protection of certain at risk groups, in particular disabled people, people with life-limiting illnesses and older people.

“These are fundamental human rights and equality issues and as such, the development of this proposed Bill must be scrutinised in light of relevant human rights and equality standards on these and related matters.”

ENDS/

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Editor’s Note

The Dying with Dignity Bill 2020 was initiated as a Private Members Bill in Dáil Éireann on 15 September 2020.  The full legislative observations submission from the Irish Human Rights and Equality Commission to the Oireachtas Justice Committee is available at the following link:

https://www.ihrec.ie/app/uploads/2021/02/IHREC-Submission-on-Dying-with-Dignity-Bill-Final-PDF-03022021.pdf

Summary of Recommendations

1. Prior to passing the Bill, or any legislation of this nature, the State must ensure that a UNCRPD compliant legal and regulatory framework that provides for “supported” decision making is in operation to ensure that disabled people have equal protection before the law.
2. If legislation permitting physician assisted dying is to be enacted, the design and development of this legislation should be guided by the ‘human rights model’ of disability and accordingly, must involve extensive discussions through active participation of particular groups.
3. Any examination of this Bill, or any legislation of this kind involve consideration of the adequacy of health and social services provided to particular groups.
4. The Bill be accompanied by law that provides for basic legal rights to independent living and palliative health care.
5. The Bill be amended to impose a statutory duty on persons exercising functions under the Bill to have regard to relevant and specific human rights and equality principles in respect of persons accessing (or seeking to access) physician assisted dying under the Bill.
6. The Bill, or any other legislation on physician assisted dying, clearly and expressly state that no person should qualify solely on the ground of disability or, age.
7. The Bill be amended to include appropriate thresholds in relation to likelihood of dying (for example, a maximum 6 months) and that the wording “is likely to die” be replaced by a more robust and objective test; for instance, ‘reasonable medical judgment’,
8. Consideration should be given to the categories of individuals who should be precluded from being a witness.
9. The Bill be amended to recognise the need for genuine, free and informed consent that is based on all relevant information.
10. The Bill should be revised to recognise that all individuals have capacity and provide for decision-making support in line with the UNCRPD.
11. The Bill be amended to recognise the time and issue bound nature of any mental capacity assessment.
12. The Bill be amended to provide legal clarity in terms of the procedures for the assessment of capacity, particularly in terms of who is to undertake this assessment and what is involved in the assessment.
13. That a cooling off period is a necessary and essential safeguard in legislation relating to physician assisted dying. The Committee may wish to consider whether the 14 or 6 day period prescribed in the Bill should be extended.
14. There should be an explicit requirement on the medical practitioner to advise a qualified person of their right to withdraw from the process at any stage, and that this process is witnessed and formally recorded.
15. The Bill be amended to ensure that the form and content of declarations are prescribed under the Bill, or by regulation.
16. The Bill be amended to provide that the Minister “shall” by regulation specify the substance or substances which may be prescribed, the form and manner in which prescription are to be issued and the manner and conditions under which substances or substances are to be dispensed, stored, transported, used and destroyed.
17. The Bill be amended to provide for the establishment of an independent oversight mechanism responsible for reviewing and affirming declarations to end life.
18. The Bill be amended to prescribe membership and terms of reference of the Assisted Dying Act Review Committee, particularly with regard to its independence, and the participation of civil society.
19. The Committee’s role include the collection and publication of relevant disaggregated data on each request and intervention for medical assisted dying.

Irish Human Rights and Equality Commission

The Irish Human Rights and Equality Commission is an independent public body, appointed by the President and directly accountable to the Oireachtas. The Commission has a statutory remit set out under the Irish Human Rights and Equality Commission Act (2014) to protect and promote human rights and equality in Ireland, and build a culture of respect for human rights, equality and intercultural understanding in the State.

The Irish Human Rights and Equality Commission is Ireland’s national human rights institution and is recognised as such by the United Nations. The Commission is also Ireland’s national equality body for the purpose of a range of EU anti-discrimination measures.