How would you respond to a request to assist a loved one with disability to die?
How do you, as the carer for a person with disability, respond when the loved one for whom you’re caring, says: “I want you to help me die.”?
In the recent debates in New South Wales and Victoria over proposed voluntary assisted dying legislation, there has been little discussion of the rights of people with disability. Yet the issue is even more fraught for people with disability than it is for others.
The NSW bill appeared to make no specific recommendation in this regard.
Among disability advocates the debate has centred on two issues. One point of view has it that people with disability should have the same rights as others. The other urges that the emphasis should be on the right of people with disability to equal access to medical services. They argue this would greatly reduce the number of people reaching the point where they will consider making an end to their suffering.
This view was expressed in a recent piece in the Guardian Australia by Craig Wallace (Last modified Monday 9 October 2017 16.31 AEDT), convenor of the Lives Worth Living disability advocacy group.
“Like the rest of the community, people with disability debate euthanasia with many views, but a number of us are genuinely concerned that legalised suicide will encroach on our rights and see the vulnerable among us subjected to financial, social, emotional and other pressures to take our own lives.”
Victorian Government advisory panel
Tricia Malowney, a member of the advisory panel appointed by the Victorian Government, agreed people with disability don’t receive equal access to health services but said the two issues shouldn’t be confused. She told the ABC that a large majority of more than 1,000 people interviewed by the panel, including those with disabilities, believed people with disability should not be denied access to voluntary assisted dying if they met the eligibility criteria.
But, she said, some people with disability expressed the fear that they could be pressured into applying to access voluntary assisted dying.
The panel considered the case of Tina, a 43-year-old woman with cerebral palsy and reported:
‘Fully employed as a disability advocate and educator, Tina lives independently and communicates using a communication tool. Six months ago, Tina was diagnosed with an aggressive cancer for which she has now exhausted all treatment options.’
The panel decided Tina should have the assisted dying choice because her request was ‘voluntary and enduring’.
Craig Wallace wrote that Tina might have been diagnosed earlier if she’d had proper access to medical attention.
“If Tina has aggressive cancer there is a very good chance that she couldn’t even get a proper medical exam or the kinds of screening recommended for women her age. She probably couldn’t even find a clinician with the time and capacity to communicate with her.
“In the real world, someone like Tina is also very unlikely to have a job and to be able to afford private health insurance or even find the informal supports that other people could call on following a life-changing health diagnosis. As a woman with disability she’s also far more likely to be facing various forms of violence or abuse that make life seem intolerable.”
Essentially, both the NSW bill and Victorian legislation require people with disability to meet the same eligibility requirements as everyone else. They are required to be able to demonstrate the same decision-making capacity. Doctors may not accept instruction from family members, service providers or carers, only from the patient. The safeguards against coercion apply equally to people with disability.
It could be argued the legislation should make specific reference to people with disability as a separate category.
PWD disadvantaged by healthcare system
Evidence shows that people with disability are disadvantaged by the health-care system.
Tricia Malowney wrote:
“For the past 15 years I have been advocating for better access to health and justice services for people with disabilities … People with disabilities are treated badly by the health system. There are some distressing examples of assumption that people will want to die because they cannot move or support themselves. Some have been denied access to screening processes because they are in a wheelchair and it is a no-lift hospital.”
Craig Wallace cites a survey taken by Access for All Alliance in 2003 of general practices around Australia.
“The survey showed that of the 3553 responses there were just over 14,000 fixed-height examination beds and only 719 adjustable-height examination beds. An open letter from the Human Rights Commission found that in many situations patients, particularly women with disability, do not get a service at all because of the inaccessibility of fixed-height examination beds. One woman had not a pap smear for 10 years because her doctor could not transfer her onto the fixed-height examination bed.”
He concluded: “Until every person with disability has equal access to screening, prevention and treatment in our health system, suicide prevention resources and meaningful alternatives to ending it all, offering us euthanasia isn’t an act of generous equality. It’s our Hobson’s choice – a fake, cruel one-way exit for vulnerable people locked out of basic health care and other social and community infrastructure that others take for granted.”
NB: You may be interested in reading a related separate story in this issue of Work ‘n’ Care called
‘Parliaments looks at voluntary assisted dying’.