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File image of a nurse holding patient's hand. ALAMY STOCK PHOTO
Assisted Dying

Committee on Assisted Dying told ‘disabled people need to be central’ in shaping legislation

At this morning’s session, the Committee discussed protecting vulnerable groups, including people with disabilities and older people.

THE COMMITTEE ON Assisted Dying has been told that any future legislation must not “become a source of pressure or coercion for disabled people”.

The committee is currently examining whether to introduce voluntary assisted dying laws in Ireland, following the passage of a bill tabled by People Before Profit TD Gino Kenny in 2020.

At this morning’s session, the Committee discussed protecting vulnerable groups, including people with disabilities and older people.

Dr Aideen Hartney, Director of the National Disability Authority (NDA), noted that those who avail of assisted dying cite an inability to partake in things that made life enjoyable, as well as the loss of autonomy and dignity.

She told the Committee that it’s important to consider “how the barriers and challenges in place in our society” are impacting on the dignity, autonomy or enjoyment of life of some people with disabilities.

Hartney noted that the provision of supports to allow for the above are “inconsistent across healthcare regions” and added that “in many cases people do not receive enough support to enjoy good quality of life”.

The NDA director cautioned that the “absence of the necessary supports” should not become a “reason for disabled people to feel that they cannot enjoy a good quality of life”.

She also noted that importance of people to be able to live within their own homes and communities and added that Assisted Dying legislation should not be pursued at the “expense of

work to ensure disabled people can be supported to age in place in their communities”.

“If there is not sufficient access to homecare supports or respite, family members can exhaust their capacity to make up the shortfall,” said Hartney.

“This can give rise to a narrative in which the disabled person considers themselves to be a burden, and so their options for living with dignity and autonomy seem more constrained.”

Hartney added that “cost of medical or social care supports has been cited as a reason for considering Assisted Dying in other jurisdictions”.

She told the Committee any legislation must be “developed to ensure that poverty or lack of access to funds does not become a reason for people to choose Assisted Dying”.

Hartney also expressed concern that “initial safeguards” could be reduced over time and “increase the risk of abuse of the concept for groups in more vulnerable situations”.

She called for “additional care” to be taken to ensure “necessary supports for autonomous and dignified living are in place, and that their absence does not become a source of pressure or coercion for disabled people to see Assisted Death as a more viable option”.

Dr Rosaleen McDonagh also addressed the Committee.

She is a disabled Traveller woman and a member of the Irish Human Rights and Equality Commission.

In her opening statement told the Committee that “there is a sense that safeguarding is flimsy because it can never be human proofed”.

She described her impairment as “beautiful and complex” and added: “The perception of illness and disability is understood as loss of dignity, loss of agency and bodily integrity is presented as the loss of personhood.

“This issue is of huge concern and relevance to disabled people. We need to be central in this shaping of legislation.”

McDonagh said support for disabled people and those facing terminal illness is “paramount” and that “advanced healthcare directives need to be more accessible and affordable”.

She also warned against the “toxic subtext of the burden and cost of illness and impairment” and voiced concern about “permissions for assisted dying being extended beyond those facing imminent death”.

McDonald told the Committee: “Across Europe where disabled people are targeted as being less than, particularly if we are not able to economically produce, demonstrates the perception of the low value of our worth.

“Many people with impairments like myself, internalise those messages.”

She called for “more counsellors, social workers and clinicians, including cohorts of professionals with impairments needs, to be resourced and included in the context of this discussion”.

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