{"id":50942,"date":"2021-09-08T23:03:16","date_gmt":"2021-09-08T22:03:16","guid":{"rendered":"https:\/\/blogs.bmj.com\/bmj\/?p=50942"},"modified":"2021-09-21T16:10:29","modified_gmt":"2021-09-21T15:10:29","slug":"i-want-choice-and-control-over-how-i-manage-the-dying-process","status":"publish","type":"post","link":"https:\/\/blogs.bmj.com\/bmj\/2021\/09\/08\/i-want-choice-and-control-over-how-i-manage-the-dying-process\/","title":{"rendered":"I want choice and control over how I manage the dying process"},"content":{"rendered":"

I am a disabled person. I am not terminally ill, but one day I will reach the end of my life. I am not scared to die, but I want choice and control over how I manage that dying process in case it involves unbearable suffering. I do not claim to represent anybody other than myself, but my views on this issue do happen to align with the vast majority of the population. <\/span>The largest ever poll<\/span><\/a> on assisted dying in the UK found that 84% of the population support a change in the law and this includes 86% of those who have a disability. [1,2]\u00a0<\/span><\/p>\n

I am also a qualified doctor. I broke my neck as a medical student and am paralysed in all four limbs. I sat on the Commission on Assisted Dying for 12 months in 2011 before co-authoring the Commission\u2019s report in 2012. [1] We concluded that \u201cThe current legal status of assisted dying is inadequate and incoherent\u2026\u201d But this legal fudge has persisted for another decade. And in fact, things have worsened.<\/span><\/p>\n

I am deeply troubled by the persistent narrative that disabled people have something to fear from a change in the law on assisted dying. I also find it immoral that disabled people are exploited by those with principled opposition to law change. Disabled people have fought relentlessly to have their own voices heard in society; we should never be used to front somebody else\u2019s cause.<\/span><\/p>\n

In 2019, Jane Campbell wrote in <\/span>The BMJ<\/span><\/i> about her opposition to law change. [3] I have huge respect for Campbell and all she has achieved for disability rights. Her elevated position in the House of Lords, eloquent writing, and the gravitas of her public speaking come from a position of authority.\u00a0<\/span><\/p>\n

I have a different, but not dissimilar impairment to Campbell, in terms of its physical impact. On the issue of assisted dying, I respectfully disagree with her. In my view, campaigning to prohibit autonomy, choice, and control over this stage of life contradicts the central principles of disability activism. I cannot see justification for this kind of \u201cpick and mix\u201d approach to disability rights, when in other areas we campaign for the right to choose and to have our voices heard. It strikes me as undemocratic, based on spurious reasoning, and contradicts all the evidence we have available to us.<\/span><\/p>\n

Transparent assisted dying legislation with appropriate safeguards and protections for disabled people can exist and already work effectively around the world. In Oregon, a tightly-restricted assisted dying law has been in place for over 23 years. Disability Rights Oregon has never received a complaint of abuse or attempted abuse under the Oregon Death with Dignity Act, <\/span>as far as we are aware<\/span><\/a>. In recent years legislators across the USA, Australia, New Zealand, and Spain have scrutinised the practice of assisted dying and concluded that the fairest, safest, and most compassionate thing they can do is to also change the law. A citizen\u2019s jury in Jersey came out in favour of changing the law and this will now be debated. Why shouldn\u2019t the UK follow their lead? There is a reason why more and more laws on assisted dying are being passed around the world, and none are being repealed. The evidence is clear: assisted dying legislation works.<\/span><\/p>\n

By contrast, the current law in this country is broken. How can a law which forces people to smuggle themselves to Switzerland, or plan a lonely suicide behind closed doors be deemed safe? How can starving and dehydrating to death, being sedated into a comatose state, or hoping not to be in the minority for whom even the best care is ineffective, be considered suitable alternatives to meaningful, patient-led end-of-life choice?<\/span><\/p>\n

I am pleased that medical opinion in the UK is shifting. <\/span>Sixty one per cent of doctors now want the BMA to change its policy on assisted dying (with 40% supportive, 21% neutral, 33% opposed, and 6% undecided, out of 28,986 respondents), which it must surely do as a matter of urgency before its claim to being \u201cthe voice of the profession\u201d is undermined. <\/span>[4] BMA members will have an opportunity to vote on this at the forthcoming ARM.\u00a0<\/span><\/p>\n

Campbell has argued that no disability organisations have ever campaigned for assisted suicide to be legalised. But why should they? This is not about disabled people. This is about terminally ill people, some of whom may be disabled people. Disability organisations must channel hard gained funds into supporting disabled people in the community, as opposed to campaigning for changes to legislation that do not sit within their remit. Just 4% of disability rights organisations have declared a position <\/span>against<\/span><\/i> assisted dying. [5]<\/span><\/p>\n

The power of terminally ill people having the option of assisted dying is immense. They report a sense of freedom and relief; a feeling of being reborn in a way that embraces excitement, happiness, being able to say goodbye, celebrating life and the opportunity to reflect on the choices they might want to make in their final months, weeks, and days. For many, maintaining the status quo results in abject misery, intractable pain, and acute fear of the unknown up until the moment of death.\u00a0<\/span><\/p>\n

It should not matter if we are disabled, medically qualified, both or neither, surely together we can recognise that the outright ban on assisted dying goes against an individual\u2019s right to choose?<\/span><\/p>\n

Stephen Duckworth<\/i><\/b> is a disability rights activist and Chief Executive of Disability Matters Global, Trustee of 2 Disability Charities and Non-Executive Director of Network Rail and the Palace of Westminster Restoration & Renewal Delivery Authority<\/span><\/i><\/p>\n

Competing interests<\/i><\/b>: None declared.<\/span><\/i><\/p>\n

Stephen Duckworth is expressing his own views without claiming to be speaking on behalf of the organisations that he is currently working for.<\/span><\/i><\/p>\n

References<\/b>:<\/span><\/p>\n

1] <\/span>https:\/\/www.demos.co.uk\/files\/476_CoAD_FinalReport_158x240_I_web_single-NEW_.pdf?1328113363<\/span><\/a><\/p>\n

2] https:\/\/www.dadid.org.uk\/<\/span><\/p>\n

3] <\/span>https:\/\/blogs.bmj.com\/bmj\/2019\/02\/06\/disabled-people-like-me-fear-legal-assisted-suicide-it-suggests-that-some-lives-are-less-worth-living\/<\/span><\/a>\u00a0<\/span><\/p>\n

4] <\/span>https:\/\/www.bma.org.uk\/advice-and-support\/ethics\/end-of-life\/physician-assisted-dying-survey<\/span><\/a>\u00a0<\/span><\/p>\n

5] <\/span>https:\/\/jme.bmj.com\/content\/early\/2021\/01\/04\/medethics-2020-107021<\/span><\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

I am a disabled person. I am not terminally ill, but one day I will reach the end of my life. I am not scared to die, but I want […]<\/p>\n

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