The End of Life Choice Bill doesn’t protect against coercion – Paula Tesoriero, Disability Rights Commissioner

The End of Life Choice Bill doesn’t protect against coercion – Paula Tesoriero, Disability Rights Commissioner

August 21, 2019

While courts around the world have grappled with the idea of coercion…we are saying it’s ok for our Bill in New Zealand for one doctor to make that assessment. 

Some of you might have heard me on the Breakfast programme with John Campbell this morning talking about the End of Life Choice Bill.  

I’d like to follow-up that interview in talking a bit a more about coercion because that’s what Parliament will be debating this week (Wednesday 21 August) and in subsequent weeks - around how the Bill will actually work, the mechanics and the way it will be administered, and there’s a couple of aspects there that I really want to draw to people’s attention.  

The thing about coercion is we know that often it can come not just from individuals but from broader messages in society at large, be that advertising, be that the ableist world we live in, and attitudes around disability.  

We know that many of the reasons why people access assisted dying regimes overseas is not because of pain but actually because of things like a loss of dignity, a loss of potential to participate in activities and feeling a burden on their family and some of these things are actually representative of the lives of many disabled New Zealanders - those feelings and those attitudes that exist can really create a sense of coercion for disabled people, so it doesn’t just need to come from an individual. 

The thing about the Bill that I’m really concerned about in relation to coercion is that it only needs one doctor to make an assessment of whether or not a person has been coerced. The doctor does not need to have known the individual for very long which means they don’t know the family context, the broader social community context and the life of that person. Also, the doctor is only required to do his or her best to assess coercion which is a fairly random test. My sense of doing my best may well be different from your sense of doing your best and that’s just not good enough for a Bill that has the consequence that this Bill has.  

Courts around the world have grappled with the idea of coercion, how do you safely ensure that a person has not been coerced? So, courts around the world grapple with this and go through long hearings to determine it yet we are saying it’s ok for our Bill in New Zealand for one doctor to make that assessment and use his or her best efforts to do so. 

The other aspect around coercion is that the Bill invites doctors to talk to family members about whether or not a person has been coerced. We know that family members can coerce people and we know that particularly it’s an issue for disabled people and for elderly people. Issues of coercion by family is a very real concern and the Bill in no way provides mechanisms to ensure that that coercion can’t take place. There’s no oversight mechanism generally around ensuring that no coercion happens.  

The other thing is that coercion is one critical part of this Bill but it’s only one part and you have to read the Bill in its totality. So I remain really concerned as I said on the interview this morning that this Bill is one where people think that by removing disability as a ground on its own to access the regime means that the issues for disabled people have gone away, well, I just don’t buy that. Firstly, there is no bright-line test between disability and terminal illness. We know that. Secondly, the requirement under the Bill for the length of time that diagnosis of terminal illness must be given is six months. Well, doctors themselves talk about diagnosis as being an art not a science. It is not exact; it is not certain. The safeguards in the Bill continue to be inadequate around competence, around coercion and around a number of oversight mechanisms in the Bill.  

I remain concerned about the process that this Bill has gone through.  It’s started as an inadequate Bill to start with. Some of those amendments, in fact, all of those amendments are well intentioned, and I give really credit to Members of Parliament who are trying to make this Bill safer but in the end a Bill like this is never free from risk.  

We’re undertaking a process at the moment where we’re making multiple proposed amendments that are clumsy, awkward, and I think should create a real sense of concern actually by New Zealanders about what the totality of this Bill will look like.  

Finally I remain concerned about the fact that we are talking about introducing a regime to end people’s lives at a time when we are not having the mature discussions we need in New Zealand around the adequacy of palliative care services, the adequacy of support services for disabled people and, critically, we are not having a conversation about attitudes towards disability and disabled New Zealanders. We need to do that so that all New Zealanders really understand coercion as it relates to disabled people and the particular risks that are faced.