‘End of life bill demeans the disabled’

The euthanasia bill risks sending a message to the disabled that their lives are valued less than the lives of abled-bodied New Zealanders, the Disability Rights Commissioner says.

In an excoriating and occasionally heated submission on the End of Life Care Bill to Parliament’s Justice Select Committee on Monday, Commissioner Paula Tesoriero said the Bill’s drafting could lead to serious unintended consequences that would fall disproportionately on disabled Kiwis.

A two-track system

Tesoriero told the committee she was especially concerned by the potential inclusion of non-terminal conditions by reference to a “grievous or irremediable terminal condition".

She said this ran the risk of unjustly including people with disabilities who don't need to end their lives.

“What is clear is that this Bill intends to go beyond terminal illness; what is unclear is exactly what conditions are in or out,” Tesoriero said. 

“It is readily apparent that the scope is unclear and misunderstood."

Tesoriero said it was unclear whether illnesses like muscular dystrophy, multiple sclerosis or a declining medical condition were included or excluded from the legislation. 

She said it should not be left to the courts or any judicial body to determine the scope of who was included in the Bill and who was excluded. 

“There may well be people caught by the Bill that Parliament never intended to be,” she said. 

She argued that the inclusion of disabled people in the legislation sent a message that disabled lives were not worth living.

Tesoriero said that a suicidal disabled person who met the Bill’s criteria would be allowed to end their life, whereas an abled-bodied person who also wanted to end their life would be given social support and counselling and would be prohibited from assisted suicide. 

National MP Chris Bishop asked if Tesoriero believed assisted dying would always discriminate against disabled people or whether her objection was limited to this particular bill.

Tesoriero replied that in “certain circumstances” a framework might exist for terminal illness with adequate safeguards, but moving beyond the terminally ill was more fraught.  

“We have not found a jurisdiction or a framework that would suggest the safeguards could be safe,” she said. 

The question of competency 

Tesoriero and the members of the committee wrestled over questions of choice and coercion in light of mental health conditions.

“A person could easily meet the competency threshold in this Bill but still be profoundly affected by depression or other factors,” said Tesoriero.

“But there is no requirement that the physician consider conditions affecting a person’s judgment or decision-making,” she said.

Bishop and Labour’s Greg O’Connor questioned Tesoriero’s assessment that the Bill could include people with mental health conditions. O’Connor argued that the issue was one of consent and that disabled people had the same right - and competence - to consent to die as the abled-bodied. 

“Disabled people are perfectly able to have well-informed consent themselves, is that not true?” asked O’Connor.

“The scope is far too broad to suggest people with intellectual disabilities would not,” replied Tesoriero.

Her response drew a terse rebuke from the committee. 

“There is no way that anyone with an intellectual disability could come within this Bill,” interrupted O’Connor. 

“… yet,” said National MP Maggie Barrie.

The Commissioner said she did not believe an intellectually disabled person would come under the scope of the Bill’s exclusions. Although the legislation requires a patient’s consent, it does not address people with multiple disabilities both mental and physical for whom the issue of consent is murky. 

“Often there are multiple disabilities. It is entirely feasible for a person with an intellectual disability who also has another form of disability to come under this Bill,” said Tesoriero

“That’s wrong, that’s not true,” said Bishop.

“Sorry, many New Zealanders have multiple disabilities, what’s not true?” she replied.

Monday was the first day of oral submissions on the Bill. The Committee has received a record 35,000 submissions causing it to extend its reporting deadline to March next year.

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