Wednesday, October 13, 2021

People with disabilities and assisted dying

The following was published by the All Party Parliamentary Group for Dying Well on October 11, 2021.

A recent briefing to the UK parliament makes several claims (1)

Claim 1: “People with disabilities are not generally opposed to assisted dying laws”(1)

A survey of the views of disability rights organisations on assisted dying found that 94% declined to comment, with only 4% declaring they were neutral and 4% opposing, ie. none were in support.(2) 

The reluctance to state a position by disability rights organisations does not imply neutrality or support. 

Disabled people’s organisations choose to prioritise their limited resources in supporting disabled people to thrive with dignity, independence and equality. 

Twelve disabled people’s organisations have actively come out against the Meacher bill in the last 2 months

Claim 2: “Assisted dying laws do not harm people with disabilities: ”(1) 

Reports acknowledge the existence of abuse(3) or explicitly describe higher proportions of vulnerable individuals requesting an assisted death(4) 

Case reports of assisted deaths in intellectually disabled people are a particular concern.(5) 

Discrimination cannot be excluded as nowhere in the world do official reports on assisted dying monitor or document the decisions made in deciding eligibility. 

In 2020, 53% of those choosing an assisted death in Oregon described feeling a burden.(6) Disabled people are therefore more vulnerable to the offer of an assisted death. 

All legislatures and retrospective studies on assisted dying rely on the physician to self report, so discrimination and unconscious bias(7) will be missed in all such reviews and studies. (8)(9)(10)(11) 

Considering the inability of current systems to identify discrimination, individual cases of abuse are likely to be the tip of the iceberg.

Claim 3: “Assisted dying laws do not show disrespect for people with disabilities”(1) 

The law exists to protect the majority and particularly those at risk. 

Scandals involving the elderly or disabled people remain rife. 

We are still struggling to implement 15yr old capacity legislation across the UK. 

Disabled people are not inherently vulnerable. It is the systems that discriminate against them. 

The suggestion that legalising assisted dying should not be delayed during attempts to fix disability discrimination, is an insult to disabled people and is itself discriminatory. 

It is a delusion that assisted dying ‘safeguards’ will magically improve existing discrimination

Claim 4: “Assisted dying laws don’t damage healthcare for people with disabilities,”(1) 

The average growth in palliative care services was much slower in west European countries allowing assisted dying, compared with countries without assisted dying.(12) Particularly striking is the lack of any growth in palliative care services in Belgium and the Netherlands from 2012 to 2019. 

Everyone, including disabled people, are less likely to have the choice of palliative care in many assisted dying countries. This compounds the existing, widespread inequalities in healthcare that disabled people already must endure.

1 Colburn B. Policy briefing: disability and assisted dying laws. Glasgow: Policy Scotland, University of Glasgow, 2021. 
2 Box G, Chambaere K. Views of disability rights organisations on assisted dying legislation in England, Wales and Scotland: an analysis of position statements. Journal of Medical Ethics, 2021; 
3 Steck N, Egger M, Maessen M, Reisch T, Zwahlen M. Euthanasia and assisted suicide in selected European countries and US states: systematic review. Medical Care, 2013; 51(10): 938-44. 
4 Expertiscentrum euthanasie. Dossierstudie psychiatrie: taken delen met GGZ (Psychiatry file study: retrospective file study of the backgrounds and course of euthanasia requests of psychiatric suffering at the Expertise Centre Euthanasia, 2012-2018), 2019. 
5 Tuffrey-Wijne I, Curfs L, Finlay I, Hollins S. Euthanasia and assisted suicide for people with an intellectual disability and/or autism spectrum disorder: an examination of nine relevant euthanasia cases in the Netherlands (2012–2016). BMC Medical Ethics, 2018; 19: 17. 
7 Oxtoby K. How unconscious bias can discriminate against patients and affect their care. BMJ, 2020; 371: m4152. 
8 Rietjens JAC, Deschepper R, Pasman R, Deliens L. Medical end-of-life decisions: does its use differ in vulnerable patient groups? A systematic review and meta-analysis. Social Science & Medicine, 2012; 74: 1282-7. 
9 Emanuel EJ, Onwuteaka-Philipsen BD, Urwin JW, Cohen J. Attitudes and practices of euthanasia and physicianassisted suicide in the United States, Canada, and Europe. JAMA, 2016; 316(1): 79-90. 
10 Dierickx S, Deliens L, Cohen J, Chambaere K. Comparison of the Expression and Granting of Requests for Euthanasia in Belgium in 2007 vs 2013 (letter). JAMA Internal Medicine, 2015; 175(10): 1703-6. 
11 Battin MP, van der Heide A, Ganzini L, van der Wal G, Onwuteaka-Philipsen BD. Legal physician-assisted dying in Oregon and the Netherlands: evidence concerning the impact on patients in ‘‘vulnerable’’ groups. Journal of Medical Ethics, 2007; 33:591–597. doi: 10.1136/jme.2007.022335 
12 Arias-Casais N, López-Fidalgo J, Garralda E, Pons JJ, Rhee JY, Lukas R de Lima L, Centeno C. Trends analysis of specialized palliative care services in 51 countries of the WHO European region in the last 14 years. Palliative Medicine, 2020; 34(8): 1044-56. 1341

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