Disability Rights Commissioner speech on the End of Life Choice Bill

Disability Rights Commissioner speech on the End of Life Choice Bill

May 21, 2018

As Disability Rights Commissioner, I have a statutory responsibility under the Human Rights Act to protect and promote the rights of disabled New Zealanders who are at risk under this Bill. I am also disabled. The main thing that I want members to take away from my submission is that this Bill could have serious unintended consequences that will fall disproportionately on disabled people and our place within society. 

I want to focus on three key aspects from my written submission in opposition to this Bill: 

  • The scope of the Bill is too broad and undermines the position and value of disabled people; 
  • The proposed safeguards in the Bill are deficient, for both terminal and non-terminal conditions; and
  • It is premature to discuss law change in this area without considering the adequacy of existing resources and services. This lack of resource creates frustration and sometimes despair for the people I talk with.  In the absence of adequate services, we run the risk that choice under this Bill will be a ‘clayton’s choice’ for disabled people.  

I turn now to my first point that the scope of the Bill is too broad and undermines the position and value of disabled people.

I am specifically concerned about the inclusion of non-terminal conditions by reference to “a grievous or irremediable medical condition”. What is clear is that this Bill intends to go beyond terminal illness.  What is unclear is exactly what conditions are in or out.  

On reading some of the submissions on this Bill, as well as listening to public discussion to date, as well as my discussions with media, it is readily apparent that this scope is unclear and misunderstood.  

In certain circumstances, it is possible that a range of conditions fall within the Bill. Does Parliament intend conditions like muscular dystrophy, multiple sclerosis, or a declining mental health condition to be included?  It is unclear how the provisions of the Bill prevent such an interpretation. Furthermore, the criterion of “unbearable suffering that cannot be relieved in a manner tolerable to the person” is entirely subjective. 

Something as significant as a framework to end a person’s life cannot be left to the Courts or review bodies to determine down the track who Parliament intended to be included. This subjectivity is exacerbated by the complete lack of sufficient safeguards, which I will come to later on. 

The lack of precise scope for non-terminal conditions is critical for two reasons:

  1. There may well be those caught under the Bill who Parliament never intended; and
  2. The scope beyond terminal illness sends a message to society that the lives of disabled people are not worth living. 

Proponents of this Bill talk a lot about choice and state that only those who can freely make that choice fall within the Bill. 

Many disabled people can freely exercise their choice, and some of those support the idea behind this Bill. However, many disabled people cannot freely exercise choice.  

The reality for many disabled people is that decisions are made for them such as where they live, who they live with, what money they have to spend, what they eat and what they wear.  

And supporters of this Bill might argue this legislation won’t apply to those people. This would only hold true if there was an even playing field with respect to choice between disabled and non-disabled, and if there were sufficient safeguards to enable disabled people to express their choice free from pressure or coercion.

We live in a world where people focus on fixing us, not on removing the barriers that make us disabled.  We live in a country where our domestic laws are not in line with our international obligations to support disabled people making their own decisions.

How can we, therefore, have confidence that this Bill will only apply to those who can exercise choice freely? Parliament’s role is to ensure that the legal framework is safe for all New Zealanders, not just the group who can make fully autonomous decisions. The second key aspect of choice is that exercising free choice has impacts for others and this choice, under this legislation, sends a message to society that the lives of disabled people are not worth living. 

We know that many people still see disabilities, particularly in more severe forms, as tragic or even ‘a fate worse than death’ and to be pitied or avoided. We see it in the media, we see it in how we are treated, and we see it in the systems, policies and structures that are put in place.  

By providing a pathway for disabled people to end their lives prematurely through passing this Bill, Parliament risks sending a message, that the lives of disabled people are of less value than those of non-disabled people. 

I now want to move briefly to the inadequate safeguards in this Bill. They fall short in a number of areas: 

Competency: A person could easily meet the threshold in the Bill but be profoundly affected by depression or other factors. There is no requirement that the physician consider conditions affecting a person’s judgement or decision-making. 

Coercion: The Bill’s safeguards do not require doctors to really find out whether someone is being pressured, coerced, or influenced by family who, in the case of disabled people, can sometimes be those most likely to want to pressure a person into ending their life prematurely.  

Informed consent: Under the Bill, doctors are not required to provide information on side effects of medication, support or counselling options, or referrals to people with lived experience of disability which might help a person reach a different decision. 

Cooling off period: The Bill does not provide for a specific waiting period, sometimes called a “cooling off period” to prevent people making reactive decisions. It is not unusual for disabled people to go through periods of time where things get too much – in this case, it would be crucial to allow a considered period of reflection and access to support.

Oversight mechanism: A key tenet of disability rights is ‘nothing about us without us’. Yet the oversight group in this Bill is made up of medical professionals only. There is no provision for independent judicial oversight, an ethicist, or other non-medical professionals, and importantly, no provision for a person with lived experience of disability or long-term chronic illness to be part of the group. 

Thirdly, it is premature to discuss law change in this area without considering the adequacy of existing resources and services. 

New Zealand has ratified the Convention on the Rights of People with Disabilities.  This obliges the government to protect, promote and ensure the full and equal enjoyment of all human rights and freedoms by all disabled people. 

New Zealand has a long way to go to fully meet the obligations of the Convention.  This is echoed in past UN and domestic reports and will the subject of UN examination next year.

Disabled New Zealanders are marginalised and discriminated against in almost all areas of life, and experience poor life outcomes in a range of areas.  

What we collectively need to focus on is better supports to enable disabled people to participate fully, funding, access to services, and changing attitudes. Instead we are talking about how we can help people end their lives.

If core services are not funded and resourced appropriately, and barriers are not reduced for disabled people, then assisted suicide runs the risk of becoming the default option. This is a matter of real concern to me. 

Conclusion

This bill, in its current form, poses a serious risk to New Zealanders – the scope is too broad, the safeguards aren’t adequate and neither are the current services and supports available to people near the end of their life. For disabled New Zealanders, it goes even further: it not only poses a risk to individuals but to how we are seen in society. I oppose this bill in its current form.