MDMD and Disability

Introduction

Within our supporters’ membership are some who are classed as disabled under the Equality Act 2010. We highly respect their place in society and their collective huge contribution to it. However, under the 1961 Suicide Act we believe that as the law stands disabled people do not have equal rights about end of life choices as they cannot seek help to end their life if that is their wish. In order to give disabled people equal rights we propose that any new assisted dying legislation should also recognise that some may not be physically able to cope with oral methods of taking medication such as those adopted by States such as Oregon and more recently California.

In February 2018 The Royal Society of Medicine held a meeting entitled ‘Choice at the end of life: Current practice and overseas developments’, in which many speakers represented both sides of the argument or a neutral stance. One of those speaking against legalising assisted dying was the late Juliet Marlow who represented ‘Not Dead Yet’, who are a network of disabled people opposed to euthanasia or assisted suicide. She argued eloquently that society in general fails to include the disabled and she had a fear that society would expect the disabled to request assisted suicide. She favoured instead that disabled people should utilise the option of withdrawing or refusing treatment if they wish to hasten their death. She called for better funded social and palliative care and promoted a social model of disability which emphasized that they don’t have a problem which needs fixing. She stated that their medical condition was not the problem, the problem is how society views them. She believed in a good death with palliative care. Her talk was followed by a doctor with 15 years of hospice experience, who stood up and said that there is still a lot of suffering despite the very best palliative care, he had received hundreds of requests for an assisted death, one patient even jumped off the building to his death.

Reasons why the disability rights movement might oppose assisted suicide by Dr Tom Shakespeare.

(Link https://publications.parliament.uk/pa/ld200405/ldselect/ldasdy/86/4120223.htm )

1  The disability rights movement is anxious about pressure being exerted on disabled people to end their lives against their will, and is anxious about a slippery slope to non-voluntary euthanasia. There are historical and contemporary precedents for so-called “mercy killing”.

2  There are fears that disabled people will be pressured to request assisted suicide, although evidence from Oregon and the Netherlands is inconclusive.

3  Many disabled people live throughout their lives with conditions which are defined as terminal. It is feared that it will be easy to extend the rights or cultural expectation of assisted suicide to disabled people in general, not just people who are in the terminal stage of a terminal illness.

4  Many disabled people are living with the pain and dependency, technological and physical, which is cited as evidence for the rationality of a decision by others to seek assisted suicide. They fear that their own lives will be devalued, or may even be at risk, as a result of the decisions or attitudes of others.

5  Many disabled people feel vulnerable and depressed. Many disabled people have at different points wanted to end their lives. With support and over time, most disabled people have come to terms with their impairments and learned to accommodate to their restrictions, reporting a good quality of life and no longer wishing to end their own lives. They fear other disabled people making irreversible decisions and denying themselves the possibility of living a better life as a disabled person.

6  There is a fear that making assisted suicide available will send a message that it is logical and desirable for disabled people to end their own lives. This will influence the attitudes of people who live and work with disabled people. These messages and attitudes in turn will feed back into disabled people’s own views about their actions and choices, making it more likely that they will choose assisted suicide.

7  The disability rights movement has developed a social model understanding of disability, in which people are disabled by society, not by their bodies. This has made it harder for the disability rights community to engage with debates about illness, impairment and end of life.

MDMD’s Response

MDMD believes that it is up to society and the Government to set the benchmark for how disabled people are viewed and helped going forward. For too long the disabled have been subjected to subjugation, injustice, economic deprivation and had to fight for equality.

We urge the Government to invest more funding in social care, palliative care, hospices and mental health. When someone becomes disabled they should receive immediate, individual assistance and therapy to aid them with how to cope with their situation, with regular assessments and further help given if their condition deteriorates. They should have sufficient help offered so that they never feel they are a burden on their loved ones.

It is up to every one of us individually to critically examine how we view disability. Along with disability, think of ageing, grieving and even dying; it is all about acceptance, acceptance about one’s situation and acceptance by society of those less fortunate than themselves.

We should all write Advance Directives and log them with our GPs so that in the event of us becoming incapacitated the medical profession know exactly what level of medical intervention we would like for ourselves.

There should be no attempt to value another’s quality of life, only the individual him or herself can assess their own quality of life. It has been shown that even parents and paediatricians are unable to fully assess the quality of life of their children and adolescents. Healthcare data comparing quality of life ratings by children and their parents suggests it is challenging for anyone but the individual themselves to accurately assess quality of life. (Eiser and Morse 2001; Janse et als. 2005; Solans et als. 2008; Belshaw and Yeates 2018). This is relevant as the older, more disabled we become, the more we revert to dependency on others as in our childhood and first years of life.

MDMD is striving for the option of a strictly controlled process, incorporating numerous safeguards,  to aid dying for those who request it, so that those who wish to carry on living get all the help and encouragement they possibly can. With sufficient safeguards there should never be a single case whereby non-voluntary euthanasia is exercised under legislation of assisted suicide and society should ensure that the disabled do not feel pressurized to request assistance to die prematurely.

References

Eiser C,, Morse R., 2001. Can parents rate their child’s health-related quality of life? Results of a systematic review. Quality of Life Research 10, 347-357.

Janse A.J., Uiterwaal C.S., Gemke R.J., Kimpen J.I., Sinnema G., 2005. A difference in perception of quality of life in chronically ill children was found between parents and paediatricians. Journal of Clinical Epidemiology 58, 495-502.

Solans M., Pane S., Estrada M.-D., Serra-Sutton V., Berra S., Herdman M., Alonso J., Rajmil L., 2008. Health-related quality of life measurement in children and adolescents: a systematic review of generic and disease-specific instruments. Value Health 11, 742-764.

Belshaw Z., Yeates J., 2018. Assessment of quality of life and chronic pain in dogs. The Vet Journal 239, 59-64.