14 October 2013
Members of the House of Assembly
Parliament of Tasmania
Re: Voluntary Assisted Dying Bill 2013
We are writing regarding this Bill which is currently before the Parliament.
Lives Worth Living(LWL) is a network of senior disability rights advocates who have concerns about euthanasia and eugenics. We are not a religious group or a pro-life lobby group. Our views on the Bill emerge from a secular rights basis.
We are all people with disabilities. Some of our disabilities are life long and well advanced and would be included in the Bill.
We acknowledge that the disability community does not have a single view on euthanasia. There are some members who are concerned about legalised suicide for people with disabilities given the potential for abuse and perverse outcomes and others who do not have a view or support a right to choice and believe in the right to make end of life decisions for people with an illness like inoperable Cancer.
However there is a widely held view that legislation must have safeguards and closely attend to the UN Convention on the Rights of People with Disabilities which has been ratified by Australia.
In view of the above, the current Bill concerns us on a number of levels:
• The Bill does not mention the UN Convention on the Rights of People with Disabilities which has been ratified by Australia. Article 10 of the Bill, which people with disabilities strongly lobbied for, provides that States Parties reaffirm that every human being has the inherent right to life and shall take all necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with others. It is of concern that the opening sections of the Bill do not mention the Convention at all and stress equality of outcome for people with disability.
• This Bill is not confined to terminal illness and we believe opens the door to the euthanasia of people with disabilities. In section 11 there is deep blurring between medical conditions and disability which is made more obtuse rather than clarified within the Bill:
o The Bill says that eligibility includes persons with a “”progressive medical condition that is causing persistent and notrelievable suffering, for a persondiagnosed with the medical condition,that is intolerable for the person –and that is in the advanced stages with noreasonable prospect of a permanent improvement in the person’s medical condition”.
o In section 2 the Bill seeks to qualify this by saying that “For the avoidance of doubt, a person does not have an eligible medical condition solely because of the age of the person, any disability of the person or any psychological illness of the person”.
o Rather than avoiding doubt, this clouds matters - Most disabilitiesare permanent and not able to be cured. Many disabilities are progressive or have stages Many people who acquire disabilities believe them to be intolerable only to change our minds over time
o This appears to effectively open the door to the Bill encompassing some disabilities which could be unacceptable to a person at a point in time but then become bearable at a later point in time given the right supports. Many disabilities such as a high level spinal injury, multiple sclerosis, muscular dystrophy or motor neurone disease might fall into this category. In the absence of supports for people with these disabilities this Bill is open to perverse outcomes and exploitation of vulnerable people.
• LWL is concerned that the bill creates a double standard in the treatment and interventions around ending one’s life based on disability. Euthanasia is assisted suicide and as we read it the Bill fails to mandate suicide prevention and other counselling which may identify other issues in people’s lives which weigh in their decisions. Where counselling is addressed it is an option for the primary practitioner, not mandated.
• The act does not invite the person to indicate whether a lack of disability or other supports might be impacting on their decision, LWL believes that the current broke and broken disability support system around Australia, including in Tasmania, may create a raft of pressures in people’s lives which may impact on decisions. Arguably, it would enable a similar outcome to the deaths of the two twins in Belgium who took their own lives on the basis that becoming deaf/blind could be unendurable.
• LWL has experience of many people with dual disability, including long term vulnerable people whose supports have broken down. The Bill deals with depression but does not mention other forms of psychosocial disability which may impact on a person’s decision making. The way in which cognitive, intellectual or dual disability would interact with consent is unclear.
• We have some concerns about arrangements for consent under the Bill, especially for people with communication barriers. It is possible to imagine a situation where a person with a disability has no say at all or where a family member who is familiar with that person’s way of communicating is seen as the primary source of consent.
LWL supports the National Disability Insurance Scheme and the difference it will make to the lives of people with disability. We believe the proper support, not suicide, is the decent path to better lives with dignity for people with disability. The NDIS hasn’t been fully introduced. In the absence of these supports, we believe that people with disability may be subjected to a raft of subtle emotional, financial and personal pressures to end our lives.
Disability is high in Tasmania and it troubles us that Tasmanians with disability may be at higher risk of these perverse outcomes from a euthanasia bill which goes broader than terminal illness. Just under one in four Tasmanians (23%) reported a disability in 2009. This was higher than the national average of 19 per cent.
LWL also believes that there is a need for more considered national work on a range of issues at the health/disability interface and to harmonise these to avoid the risk of different human rights outcomes based on where people live.
This work should include the adoption of a National Position on Eugenics and Biotechnology by all Australian First Ministers covering issues which act on Article 10 of the UN Convention including: Assisted Suicide on the grounds of disability, Genetic Screening, Involuntary sterilisation and certain surgical procedures.
LWL believes that the Bill as it stands raises serious issues and risks for people with disability and we hope it is defeated in the Parliament of Tasmania. We are also releasing this letter publicly to contribute to community debate.
Joan Hume OAM
Lives Worth Living
14 October 2013