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Irish human rights body takes bill to task

more: Submissions, Abroad, Submissions/Abroad, Legislation, Submissions/Legislation

5th February 2021

Ireland’s human rights watchdog identifies dangers of, and calls for ‘significant amendments’ to, euthanasia and assisted suicide bill

Irish human rights body takes bill to task

Dáil Éireann granted the 'Dying With Dignity Bill' a second reading by 81-71 in October (following a short debate in which procedural peculiarities denied a number of TDs opposed to the Bill a chance to speak.) The bill, which would bring both assisted suicide and euthanasia to Ireland, then passed to the Oireachtas Committee on Justice, which issued a call for evidence. Care Not Killing responded in concert with European partners; another submission of note was that of the Irish Human Rights and Equality Commission (IHREC), which is both the national human rights institution and the national equality body for Ireland. Its 37-page submission identifies a litany of weaknesses and failings in the bill, concluding:

'The Bill cannot be examined in isolation. The Bill or, any legislation of this kind, fundamentally concerns choice and decisions to end life. Therefore, prior to enacting legislation of this kind, the State must ensure that a legal and regulatory framework that provides for supported decision making for disabled people is in operation to ensure equal protection before the law. Also, the Bill must be examined against the adequacy of current health and social care services available in the State and it must not have the effect of diminishing already inadequate services. Finally, in respect of this particular Bill, significant amendments are required to ensure the Bill meets it obligations to provide for robust and effective safeguards, as is required under the Constitution and human rights law. These amendments specifically relate to: the definition of "terminally ill", the definition of witnesses, free and informed consent, capacity, the introduction of an ex ante review mechanism and detailed reporting requirements.'

Below are a few key passages.

'Dying With Dignity'

'The title and purpose of the Bill are potentially misleading. The proposed legislation is primarily about physician assisted dying. However, it is entitled "the Dying with Dignity Bill" the purpose of which is to "make provision for the assistance in achieving a dignified and peaceful end of life." […] achieving a dignified and peaceful end of life engages a range of human rights and equality obligations, including the palliative care needs of people at the end of their life.'

Framing people as a problem to be fixed

'The "medical model" of disability is evident throughout the Bill, which takes a medical oriented approach to the process and assessment of physician assisted dying. This is of particular concern where the "medical model" views persons with disabilities and older people with high dependency needs as the "problem" that needs to be "fixed" or "cured". This is even more problematic given the deeply rooted negative perceptions about the value of disabled people and older people in society.'

Decisions are not made in a vacuum

'The Bill must be considered in light of the circumstances of disabled people, people with life-limiting illness and older people, in respect of which there are significant gaps and shortcomings in terms of rights, services and supports. Specifically, it has been noted that many of the issues leading people to request physician assisted dying in other jurisdictions, such as loss of dignity, independence and control over bodily functions, are also disability rights issues. From a rights perspective, accepting these issues as grounds for seeking physician assisted dying - rather than as grounds for improving supports to ensure dignity in living - may undermine respect for and acceptance of persons with disabilities, or older people, as part of human diversity. There is no legal right in Irish law to receive specific personal social care services including supports that enable people to live independently, such as home help or personal assistant services… Disabled people living in congregated settings continue to be at greater risk of having a poor quality of life and not being able to exercise their rights, often being separated from their local communities and living in unsuitable, outdated accommodation.'

'In relation to older people, the number of persons over 65 years of age is projected to increase from 532,000 in 2011 to 991,000 in 2031, and an increase in demand for palliative care services is expected to accompany this demographic change.'

'A recent HSE review of palliative care identified a number of gaps in provision, including: inadequate recognition of palliative care need; variable access according to age, socioeconomic considerations, geographic location, and medical diagnosis; inconsistent referral criteria and processes across regions; and a lack of guidance on standards for palliative care. Research shows that the lack of statutory entitlement to palliative care and decline in State investment in home-care services have resulted in uneven distribution of home-care services, significant waiting times, and growth in the private (for-profit) sector.'

'These combined factors limit people's choices about their end-of-life care and the quality of that care. Ensuring independent living options are accessible to all who need them, including adequate personal assistance and home care support, is crucial to respecting a person's dignity and autonomy, including choices in life. Furthermore, timely, effective and accessible palliative care is particularly critical to protecting a person's dignity and autonomy at the end of life. The Bill must not have the effect of diminishing these fundamental rights. Disability and older person services focused on autonomy, independent living and palliative care must be adequately funded and properly resourced to ensure that the proposed Bill does not become the only option. Also, to address gaps in legal protection the Bill should be accompanied by law that provides for basic legal rights to independent living and palliative health care.'

'Terminally ill'

'A person must be determined as "terminally ill" to access physician assisted dying under the Bill. A person is defined as being "terminally ill", if that person "has been diagnosed by a registered medical practitioner as having an incurable and progressive illness which cannot be reversed by treatment, and the person is likely to die as a result of that illness or complications relating thereto." This definition potentially captures a wide range of conditions, including certain severe and profound disabilities, including for example neurological disorders (such as dementia), and chronic health conditions. That is, that certain disabilities which might give rise to complex health issues could be considered as "an incurable and progressive illness which cannot be reversed by treatment, and from which the person is likely to die as a result of or complications relating thereto." Also, it is noted that "terminal illness" under the Bill's criteria is not expressly limited to physical conditions. People experiencing a range of mental and psychological conditions could potentially fall within the meaning in its current form.'

'It should be flagged that in 2020, Canada introduced a Bill proposing to extend the scope of physician assisted dying to circumstances where death is not reasonably foreseeable. The developments in Canada highlight the complex issues that may arise when designing legislation on these issues.'

'Free and informed consent'

'The Bill does not explicitly recognise the need for free and informed consent based on all the available information. In this regard, it is noted with concern that key terms have not been defined, namely "free and informed consent", "voluntary", "coercion" or "duress". Also, the Bill is silent on the steps that medical practitioners must take to ensure that consent has been given freely and on the basis of all relevant information. This may present significant issues where persons with disabilities require that information be provided in accessible formats. Notably… there is no express obligation on the medical practitioner to provide information on the person's medical diagnosis, prognosis, the potential risks associated with taking the medication to be prescribed, the probable result of taking the medication to be prescribed, options to access counselling services, or their right to withdraw at any stage. Nor is there an obligation on the medical practitioner to seek an expert opinion where the information falls outside their clinical expertise. The provision of palliative care, or clinical opinions on the diagnosis and prognosis of specific chronic life-limiting conditions are specialist medical and nursing fields. A general practitioner, for instance, may not have the requisite expertise to provide information on any or all of these matters.'

Read the submission on the IHREC in full here

Read the submission of ELC Europe (on behalf of CNK and partners) here

Image © Mike McBride, licensed for reuse under CC Licence

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