Judicial oversight for any decision to end life – IHREC

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 (IHREC) has told Oireachtas members.

IHREC scrutiny of the Dying with Dignity Bill 2020 finds that it fails to have adequate safeguards in place to protect the right to life, especially where particular groups may be placed at a heightened risk.

‘Real and irreversible implications’

There is no ex ante independent mechanism to review either a declaration of a wish to die, or the process, IHREC points out.

“The process and decision to sign a declaration to end a person’s life has the most real and irreversible implications for the rights of the person concerned, most fundamentally their right to life,” IHREC states.

It adds that, in cases that engage fundamental rights, the Irish courts have recognised the need for procedural safeguards, such as an independent review mechanism.

Judicial oversight

The UN Human Rights Committee has recommended that states consider introducing judicial oversight of requests for physician-assisted dying.

“An independent review mechanism will formalise an inherently private decision,” IHREC’s submission says.

“Given the grave implications of a decision to end life, an independent review body seems necessary and proportionate.

“The review body could be structured in a manner similar to other independent review bodies, and comprise individuals with relevant experience and specialist knowledge in areas such as medicine, nursing, bioethics, social science, psychiatry, law, ethics, and lay persons (including older people, people with a life-limiting illness, and disabled people).”

Diverging opinions’ anomaly

IHREC complains that the bill does not address the situation whereby medical practitioners may have diverging opinions, or where a person wishes to challenge a decision of either, or both, medical practitioners not to grant a declaration.

The IHREC Oireachtas submission sets out that robust and adequate safeguards are vital for physician-assisted dying, with a proper legal and regulatory framework to protect relevant human-rights considerations.

These include:

•  The positive obligation to protect the right to life,
•  The right to health and palliative care,
•  The right to participate in decision-making, and
•  That a dignified and peaceful end of life engages a range of human-rights and equality obligations.

Substantive revisions required

IHREC has said that 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.

The bill also fails to reflect the right to assisted decision-making, as is required under the UN Convention on the Rights of Persons with Disabilities (UNCRPD).

The commission recommends that the bill, or any other legislation on physician-assisted dying, clearly and expressly states that no person should qualify solely on the ground of disability (neurological, mental or physical), or age.

Impact on disabled people

“This failing is exacerbated by the fact that the Assisted Decision-making (Capacity) Act 2015 has not yet been fully commenced,” IHREC has noted.

“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,” the submission says. 

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 illnesses, and older people, IHREC submits.

Legal uncertainty

The bill states that, to qualify, a person must have an incurable and progressive illness that cannot be reversed and from which a person “is likely to die”. 

“With respect, this is too vague and could lead to legal uncertainty,” IHREC points out.

The commission has told the Oireachtas that legislating for physician-assisted dying engages several rights including: 

• The right to life,
• Respect for human dignity,
• Personal autonomy,
• The protection of particular at-risk groups, in particular disabled people, people with life-limiting illnesses, and older people.

Basic legal rights entreaty

IHREC calls for a law that provides for basic legal rights to independent living and palliative health care.

The bill also fails to explicitly recognise the need for free and informed consent based on all the available information, IHREC has said.

It “notes with concern that key terms have not been defined, namely ‘free and informed consent’, ‘voluntary’, ‘coercion’, or ‘duress’.” 

IHREC also says that the wording “is likely to die” needs a more robust and objective test, such as “reasonable medical judgment”. 

Assessment of capacity and right to withdraw

More legal clarity in procedures for the assessment of capacity, particularly in terms of who is to undertake this assessment, and what is involved in the assessment, is also needed.

IHREC says there should be an explicit requirement on medical practitioners 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.

Medical lacuna

Medical practitioners are not obliged under the bill to fully inform the individual concerned, IHREC points out. 

In addition, any legislation should have an independent oversight mechanism that is responsible for reviewing and affirming all declarations to end life, IHREC says.

IHREC points out that the bill does not define or prescribe the substances that can be administered in a physician-assisted death – it notes its concern about this lack of clarity.

Prescribed substances amendment

IHREC also calls for the bill to be amended so that the relevant minister “specifies the substance or substances which may be prescribed, the form and manner in which prescriptions are to be issued, and the manner and conditions under which substances or substances are to be dispensed, stored, transported, used, and destroyed”.

The Dying with Dignity Bill 2020 was initiated as a private members bill in Dáil Éireann on 15 September 2020.

Any review of the bill needs full and independent participation from civil society, including persons with disabilities, people with life-limiting illnesses, and older people, IHREC says.

An Assisted Dying Act Review Committee, provided for in the bill, is silent on data collection and the public reporting obligations of the committee, IHREC notes.