Ms Sin?ad Gibney:

I am joined by colleagues from our legal department, Mr. Michael O'Neill and Ms Clare McQuillan. IHREC is Ireland's independent national human rights and equality body, but what is also important for today's discussion is our role as the independent monitoring mechanism for the UN Convention on the Rights of Persons with Disabilities, UNCRPD. In 2021, we published our analysis and recommendations to the Oireachtas Joint Committee on Justice on the Dying with Dignity Bill 2020. We welcome the establishment of this committee, which is specifically focused on legislating for the very sensitive issue of physician-assisted dying. This is not an easy or enviable task. Where assisted dying is discussed in the public sphere, any debate must have the utmost regard for the complexity of the difficult issues being considered and the impact they may have on people's lives. All of us recognise the difficulties faced by people living with life-limiting illnesses and the suffering they face, especially if they fear a long, painful and protracted death.

Who could forget the courage and dignity of Marie Fleming, who, when in the final stages of multiple sclerosis, went to court to gain lawful assistance to have a peaceful death at a time of her choosing? As important human rights issues were raised by this case, the court granted our legacy body, the Irish Human Rights Commission, permission to appear as amicus curiae, or friend of the court, to assist its deliberations. Though her claim had to be legally rejected, the then president of the High Court, Mr. Justice Nicholas Kearns, described her as "in many ways the most remarkable witness any of the judges had ever been privileged to encounter".

As Ireland's national human rights institution, it is important that we set out the significant human rights and equality issues that committee's members, as legislators, will need to be mindful of in their upcoming debates and deliberations. These include 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, people who may be in relationships where coercive control is exerted and older people.

In our previous submission to the Joint Committee on Justice on the Dying with Dignity Bill, we raised considerable concerns about possible unintended policy consequences, particularly regarding the lack of sufficient safeguards to protect against undue pressure being put on vulnerable groups to avail of assisted dying. If we are to consider assisted dying to be an extension of patient-centred care and a humane response to suffering, we must ensure that these groups are robustly protected from pressure or coercion. As legislators, committee members will fully understand the complexity of creating law, particularly given the need to balance various rights and, therefore, the need to avoid the dangers of unintended consequences. In particular, I emphasise the importance of participation and the proactive inclusion of the voices and perspectives of our most at-risk groups.

The UN Human Rights Committee has warned that states that legislate for physician-assisted dying "must ensure the existence of robust legal and institutional safeguards to verify that medical professionals are complying with the free, informed, explicit and, unambiguous decision of their patients, with a view to protecting patients from pressure and abuse." As such, it is important to remember that legislators are under a legal positive obligation to ensure that adequate safeguards are in place to protect the right to life, especially where the vulnerable groups I have mentioned are at a heightened risk.

We advise that these safeguards should include, but not necessarily be limited to: the positive obligation to protect the right to life; within the protection of the right to life, there is the need for free and informed consent and protections from duress; the right to health and palliative care; and the right to participate in decision making. Specifically, I would make the point that human dignity must be respected at all stages of each individual's life, including terminal illness and death. Palliative care helps to preserve this dignity, providing an appropriate environment and helping individuals and their families to deal with pain and other distressing symptoms.

We are particularly concerned with the active participation of disabled people in decision making. This is a requirement of the human rights model of disability reflected throughout the UNCRPD. It seeks to bring about a paradigm shift in public policy that is based on a new understanding of disabled people as rights holders. This is a powerful and ground-breaking change in attitude and approach, and one that is, quite frankly, long overdue.

As the independent monitoring mechanism for the UNCRPD, it is our job at IHREC to monitor the implementation of the convention as it applies to all people with disabilities. Our strategy statement sets out a specific goal to promote CRPD-compliant legislative reform. We have repeatedly stated that the ratification of the optional protocol is not actually an option, but an imperative. One of the most significant principles of the UNCRPD is the proactive inclusion of disabled people in all areas of life. Naturally, this includes decisions on assisted dying, should they so require it. This aim should be central to the committee's work. It is crucial that the voices of people with disabilities of all ages and backgrounds are heard when drafting laws and policies that affect their rights, especially when we talk about assisted dying.

The UN special rapporteur on the rights of persons with disabilities set out in 2019 that legislation involving assisted dying must be accompanied by strong measures to protect the right to life of disabled people, which we reflected in our own recommendations to the Joint Committee on Justice. These measures include: the exclusion of disability as grounds for eligibility; safeguards ensuring free and informed consent for disabled people; access to alternatives, including appropriate palliative care; rights-based supports and other social measures; provision of accurate information about the prognosis and about peer-support counselling; and accountability regulations requiring the collection and reporting of detailed information about each request and intervention for assistance in dying.

In the coming months, we will further analyse and refine our recommendation to this committee on this issue and we will be available to assist in its deliberations if and when it needs us. However, while we can set out the significant human rights and equality issues that can assist and contribute to the committee's work, it is ultimately for the committee's members and the wider Oireachtas as national legislators to decide what the future law should be on this sensitive and complex subject.

I thank the committee for inviting us to present to it and I wish it well in its work.