The only safeguard in the context of the debate around assisted suicide is “not to introduce” it into law in Ireland, the Joint Oireachtas Committee has heard.
The Committee met with experts, along with disability activist and playwright Dr. Rosaleen McDonagh on Tuesday, where concerns were voiced relating to vulnerable groups and individuals.
Speaking ahead of the meeting, Committee Cathaoirleach Deputy Michael Healy-Rae said it would be the first meeting in the Committee’s module examining the potential consequences of assisted suicide.
“The voices of people with disabilities are often side lined so it is important that we hear how any potential legislation would affect them,” Deputy Healy-Rae said.
Tuesday afternoon’s meeting heard from Professor Desmond O’Neill, Professor of Geriatric Medicine at Trinity College Dublin and Chair of the Irish Society of Physicians in Geriatric Medicine, along with Dr Rosaleen McDonagh, an author, playwright and disability campaigner, along with representatives from the National Disability Authority.
Dr McDonagh, a Northumbria University PhD graduate and a graduate of Trinity College Dublin, made history in 2020 by becoming the first disabled female Traveller to earn a place on the Irish Human Rights and Equality Commission (IHREC).
She has previously spoken about her experience of growing up on a Traveller site and attending a special school which she described as "a very low expectation."
Dr McDonagh told the Committee that, “In my own life, when I say no, people often think I mean yes” – after there was an initial failure to understand Ms McDonagh because of her speech.
The playwright, who has Cerebral Palsy, was giving her opening statement, in what appeared to be a communication error which saw Ms McDonagh and her aide, well-known actor Don Wycherley interrupted while speaking to the committee.
She was then assisted by Mr Wycherley, her speaking aide, who read from her statement on her behalf.
“Sometimes people don’t understand me. I feel unworthy, not good enough. Someone like me is never good enough,” the campaigner said after the interruption.
Asked by Mr Wycherley if there was a tendency by well-meaning people to “misinterpret” her words, Dr McDonagh, who is from a traveller background, replied, “This happens all the time.”
At the time of the interruption, Dr McDonagh was explaining how her reason for being present was that assisted decision making mechanisms “have a direct impact” on her own daily life. She described her impairment as “beautiful and complex.”
“My speech lends itself to the perception that my capacity should and is questioned,” she told TDs and Senators.
“As a Traveller, there’s a history that most minority ethnic persons experience. Racism, poverty and being considered not worthy of an invitation to participate. We understand, we contribute and share the responsibility with regard to this particular, delicate issue.”
In the statement, read out by actor Mr Wycherley, Dr McDonagh said that there was a sense that safeguarding around assisted dying was “flimsy” because “it can never be human proofed.”
“In the war of words and diverse ideologies, ethics, politics and values become abstract and academic. The lived reality of lives that are often considered less, different and troublesome become void of agency,” the statement said.
“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,” Ms McDonagh wrote.
She went on to write that offering end of life options seemed to her “unethical” and a conversation which was “happening in a vacuum.”
“The state needs to engage with us in a real and concrete fashion,” she continued.
“Those expensive ad campaigns are overloaded with the toxic subtext of the burden and cost of illness and impairment. Contribution and diversity as well as inter-dependency would be words that send affirmative messages.”
She also wrote that the accusation of scare-monfering or conflating issues of the past “would seem disrespectful” to her and “many others” relating to their history and identity.
She also said that the Canadian situation – where permissions for euthanasia have been extended beyond those facing imminent death and now covering those without adequate social and health care provision – was “worrying” and worth referencing.
“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 continued.
“The right to a good life and a good death is the marker of our humanity. This means access to healthcare options - we know that many medics make decisions not to offer treatment routes to people with impairments.
"The call 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.
“The right to be disabled and have reassurance from the State’s apparatus and access to those rights are fundamental.”
"I would fear that whether you're disabled, old, or anything else, if this option is legalised, we're going to lose ourselves in a vacuum of an option that is harmful. And also, as you saw this morning, when I say 'no,' people often think I mean 'yes'."
At this point, Professor O'Neill, responding said, "I think the only safeguard is not to introduce assisted suicide”.
"This cannot be regulated, this cannot be governed," he added.
In his Opening Statement moments before, Prof O'Neill pointed to the “negative impacts” of assisted suicide in Canada, Oregon, and the Netherlands.
Addressing the Committee, Prof Desmond O’Neill highlighted a recent case which he was familiar with, involving a nursing home doctor in the Netherlands who “failed to recognise” the refusal for euthanasia from someone living with dementia.
He said that the female patient was sedated by a doctor “without her knowledge or consent,” while her family restrained her while she was euthanised.
“In terms of tolerance for this major breach of trust and solidarity, the profession and courts in the Netherlands sided with the doctor rather than the person who had been killed. It is this erosion of the caring and solidarity contract which is most corrosive in permitting assisted suicide and euthanasia,” he said.
“The whole structure and impetus of medicine and healthcare is a recognition of our common shared vulnerabilities, strengths and solidarity in a fabric of mutual support,” the consultant and professor told the Committee.
In general, he said this was supported by “an ethos of hope, competence, and supporting our fellow citizens from suffering and despair to the greatest extent possible.”
“A challenge to this solidarity arises from many sources, from emerging neoliberal discourses which seek to separate and prioritise the individual over the collective good, to prejudices against disability and ageing, to eugenic impulses which resurface periodically even in modern societies, such as involuntary sterilisation in Sweden and Canada up until the late 20th century."
“A particular focus of prejudice is associated with conditions affecting memory, such as dementia, despite increasing knowledge of both quality of life but also of how best to engage and support those affected,” the expert in geriatric medicine continued.
“Our challenge is to ensure that our journey of vulnerability, care and growth will not become painted with such lurid metaphors which would position some forms of living as ‘”lebensunwürdig” or life not worth living, or pathways of nihilism and despair,” Prof O’Neill told the Committee in his opening statement.
He said that the “sentimentalisation” of euthanasia – prompted by poor care – was seen in a number of modern films, pointing to the 2004 film, Million Dollar Baby:
“For physicians experienced in rehabilitation, for example, the euthanasia of the quadriplegic woman boxer by her coach at the ending of Clint Eastwood’s film Million Dollar Baby arose at the end of an extraordinary catalogue of missed therapeutic opportunities.
“Her pressure sores, as well as an infected leg which led to amputation, were indicators of sub-standard care by modern standards, she clearly had a severe untreated depression and unresolved family strife, and no effort was made to provide a more domestic and personalised environment in her “care” facility.
"A similar scenario of inadequate care, support and interpretation leading to euthanasia was played out in the French film Amour, gaining many unthinking critical plaudits.”
He said that similar accounts also featured in media reports about euthanasia or assisted suicide in cases of dementia.
Prof O'Neill added that such accounts featured elements of disempowerment, infantilization, labelling, stigmatisation, invalidation, and objectification – and failed to recognise growth and support among those living with the condition and their care partners.
The senior medic said that autonomy, while hugely important, was something which is “exercised in the embrace of others.” The expert in geriatric medicine went on to criticise a “choice logic” at play which he said “assumes that all patients are independent and autonomous, even in moments of high vulnerability.”
There is, he said, a danger that those in end of life care, are framed as “abstracted rational choosers, ignoring that they are relational, emotional, and embodied human beings.”
“Choice logic may also lead to the prioritisation of performance and control over compassion and care6, failing in the process to fully acknowledge the reality of bodily decline and the needs of caregivers,” he said.
“The dignity of the person is unassailable,” he continued, adding: “ It is aspects of the care and settings which may be undignified, rather than the person, and the the collective impulse of medicine over the millennia has been to work to improve knowledge, skills and attitudes of staff, and develop more appropriate care settings.”
“The response to distress and pain is solidarity, compassion and care,” he told the Committee, adding that seeking euthanasia or assisted suicide related to issues such as existential concerns over the future, fears that one’s voice will not be heard, and misperceptions of care paradigms.
Prof O’Neill stated that those concerns should be represented in public and private discussion, adding that to ask doctors to “run counter to this by killing patients” was something which “short-circuits and undermines our impetus to care, comfort and support.
This article was first printed in Gript and is printed with permission
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