My Death, My Decision

My Death, My Decision
Formation	2009;15 years ago
Type	Pro–assisted dying campaign group
Location	United Kingdom ;
Chair	Trevor Moore
Founder	Michael Irwin
Website	Official website
Formerly called	Society for Old Age Rational Suicide (2009–2015)

Last updated February 12, 2024

My Death, My Decision (MDMD) is an organisation that campaigns for the legalisation of assisted dying in England and Wales. The group was founded in 2009, in order to campaign for a change in the law and advocate on behalf of adults of sound mind, who are either terminally ill or incurably suffering.

History

Established in 2009, My Death, My Decision was founded by the ex-Chair and former board members of Dignity in Dying, in response to the organisation's decision to limit its campaign and solely focus on assisted dying for the terminally ill.^[2]

Prior to 2009, there had been two main assisted dying organisations in the United Kingdom; Dignity in Dying (previously known as the Voluntary Euthanasia Society) representing England and Wales, and Friends at the End based in Edinburgh.^{[ citation needed ]}

In 1935 the Voluntary Euthanasia Society was formed by a group of preeminent doctors, theologians, and lawyers - including Dr Charles Killick Millard, and Lord Moynihan.^[3] The stated aim of the society was to campaign for a change in the law and build support for the view that adults suffering from an illness ‘for which no cure is known, should be entitled by law to the mercy of a painless death if and when that is his express wish’.^[4] Shortly afterwards, in 1936 Lord Ponsonby introduced legislation, for the first time, which would have legalised assisted dying for adults who were either terminally ill or incurably suffering but the law did not pass.

Throughout the 1940s, 1950s, and 1960s the society remained active and continued in its efforts to secure reform. In 1961 the crime of suicide was formally abolished, and a series of legislative reforms including the suspension of the death penalty in 1969 and David Steel's Abortion Law Reform in 1967 suggested a growing movement in support of individual freedom. This movement culminated for the Voluntary Euthanasia Society in 1969, when Lord Raglan unsuccessfully attempted to introduce legislation, for the second time, which would have legalised assisted dying.^[5] During the 1970s the organisations briefly changed its name to ‘EXIT’ before reverting to the ‘Voluntary Euthanasia Society’, and in 1981 it reaffirmed its commitment to promote legislation to allow adults suffering from a severe illness to which no relief was known, to receive an immediate painless death, if that was the patient's expressed wish. Over the years, the society increased its efforts to secure reform of the law and commissioned opinion polls, lobbied politicians, campaigned for reform, and prepared draft legislation for the legalisation of assisted dying.^[6]

By the 1990s and early 2000s, the society had elected Dr. Michael Irwin, a former medical director for the United Nations as vice-chair and then chair until 2003.^[7] During his tenure, Dr Irwin helped to draft Lord Joffe's 2003 Patient (Assisted Dying) private members bill, which sought to legalise assistance to die for adults suffering unbearably from either a terminal or serious and progressive illness;^[8] as well as defending Dr Dave Moor, who in 1990 was the first British doctor to be accused and acquitted of murder for complying with a patient's wish to be injected with a lethal dosage of the pain-killer diamorphine.^[9] Then in 2005, when the Voluntary Euthanasia Society changed its name to ‘Dignity in Dying’, it also refined its goals so as to campaign solely for a change in the law to allows those who were terminally ill the option of an assisted dying^[10] - and this later came to be interpreted as campaigning for those with a prognosis of 6 or fewer months left to live.^[11]

In response, Dr Irwin, Angela Farmer, Nan Maitland, and Liz Nichols (all former board members of Dignity in Dying) founded the ‘Society for Old Age Rational Suicide’ to stand up and advocate on behalf of adults suffering from non-life-threatening but incurable and intolerable illnesses, who would otherwise fail be represented by a right-to-die organisation. In 2015, the organisation changed its name to ‘My Death, My Decision’ and restated its aim to secure a change in the law which would enable adults of sound mind, who were either terminally ill or incurably suffering, to decide the manner and moment of their own death.

MDMD is a member of the World Federation of Right to Die Societies.^[12]

Objectives

The organisation's Articles of Association set out its objectives as:

To campaign for a change in the law in the UK to allow medical assistance to die to be given to mentally competent adults, with incurable health problems that result in their perceived quality of life falling permanently below the level they are able to accept, providing this is their own persistent wish.

The organisation also advocates the use of Advance Decisions (otherwise known as “living wills”), and to create a forum for people who support the moral case of extending assistance to die to those who are incurably suffering.

Activities

Campaign for Assisted Dying

My Death, My Decision has long supported the rights of those who want assistance to end their own life, and lobbied Parliament for a change in the law which would enable both those who are terminally ill or incurably suffering the option of a safeguarded assisted dying. The organisation believes that there is a strong moral case to extend assisted dying to adults facing years of permanent and unbearable suffering, and cites changes in the law in Belgium, Canada, Germany, Italy, Luxembourg, the Netherlands, and Switzerland as evidence in support of its position.^[13]

In March 2019, the organisation commissioned a poll from the National Centre for Social Research (NatCen) which found that up to 88% of the public favoured assisted dying for either those who were incurably suffering or terminally ill, in at least some circumstances.^[14]^[15] The research indicated a significant shift in public attitudes in favour of assisted dying for the incurably suffering, and prompted an Member of Parliament, who had previously voted against assisted dying reform, to suggest MPs were at risk of becoming out of touch.^[16]

In 2019, the group also helped to form the Assisted Dying Coalition, a group of like-minded campaign groups seeking to legalise assisted dying for the terminally ill or incurably suffering.^[17]

Persistent campaigns include calling for the Government to set up an inquiry into the impact of the Suicide Act 1961 and to investigate jurisdictions which have legalised assisted dying abroad;^[18] challenging the use of the “forfeiture rule” (a civil law which can prevent those who compassionately assist someone to die abroad from receiving any inheritance, despite not having criminal charges brought against them);^[19] as well advocating the use “Statements of Settled Wishes”, a new safeguard for assisted dying which would allow someone to pre-register their intention to have an assisted death.^[20]

In July 2019, they organised an open letter to mark the tenth anniversary of Debbie Purdy's landmark legal case, which was signed by thirty-four leading doctors, politicians, religious leaders, academics, and campaigners, to urge the Secretary of State for Justice to consider reviewing the law on assisted dying. Although the Secretary of State for Justice had approved a call for evidence into assisted dying, the inquiry was subsequently reversed following David Gauke's resignation.

Legal cases

The non-profit organisation has consistently supported right-to-die test cases to challenge the ban on assisted dying throughout its history. In 2018, it was the first assisted dying organisation to support Omid T, a man suffering from multiple systems atrophy, to bring a legal appeal which sought for the courts to examine an extensive international body of evidence in support of assisted dying.^[21] In 2019, after Omid T had ended his life abroad days before judgment in his case was due, they were also among the first organisations to champion Phil Newby's successor case and helped it to raise more than £48,000 to challenge the legality of the ban on assisted dying.^[22] In 2019, the organisation also supported their longstanding patron Paul Lamb, who was paralysed from the neck down, to bring a fresh right-to-die case;^[23] after the Supreme Court had ruled in a 2014 case he had brought, that it would rule again a potential declaration of incompatibility between restrictions on the right to die and the Human Rights Act should Parliament fail to legislate decisively.^[24]

Advisory Medical Group

In 2019, in a letter to the British Medical Journal entitled ‘Why we’re campaigning for broader criteria for assisted dying in the UK”, the best-selling author Dr Henry Marsh, women's right advocate Professor Wendy Savage, and acclaimed medical researcher Sir Iain Chalmers challenged campaigns for assisted dying which were restricted to only those with six or fewer months left to live, and called upon Parliament to respect the choices of those facing incurable and intolerable suffering such as Paul Lamb or Tony Nicklinson.^[25] Shortly afterwards, the signatories helped to form My Death, My Decision's advisory medical group who provide advice on clinical issues, develop and publicise resources, and aim to provide a voice for medics who support patient choice.^[26]

Many of the group's aims are based on respecting patient autonomy and ending restrictions which prevent doctors and patients from openly discussing all end-of-life options. In 2019, the group secured a commitment from the General Medical Council that doctors who are informed by their patient of an intention to travel abroad for an assisted death, should not feel compelled to breach confidence and inform the police.^[27]

In 2020, amid the coronavirus pandemic in Britain, the group published guidance in the British Medical Journal which urged doctors to respect their patient's end-of-life wishes.^[28]

Annual lecturers

Since 2010, the organisation has hosted an annual lecture from international experts, campaigners, authors, academics, and philosophers on assisted dying reform. Previous speakers have included Baroness Mary Warnock, Silvan Luley (the Director of Dignitas), Virginia Ironside, Professor Jan Bernheim, Dr Rob Jonquiere, Professor Ceila Kitzinger, Dr Els van Wijngaarden, Professor A.C. Grayling, and Times Journalist Melanie Reid.^[29]

In 2019, the organisation announced that it would host a new annual lecture ‘The Doran Lecture’, in memory of Frank Doran a former Member of Parliament and committed assisted dying advocate. In 2020, the first talk was delivered by Dr Stefanie Green, Canada's preeminent expert on assisted dying and President of CAMAP (the Canadian Association of MAiD Assessors and Providers).

Organisation

The campaign group is supported by a diverse range of doctors, politicians, religious leaders, philosophers, and academics including: Sir Iain Chalmers, Professor A.C. Grayling, Dr Phil Hammond, Virginia Ironside, Dr Henry Marsh, Miriam Margolyes, Professor David Nutt, Lord Martin Rees, Baroness Kathleen Richardson, Professor Wendy Savage, and journalist Polly Toynbee.^[30]

Related Research Articles

Euthanasia is the practise of intentionally ending life to eliminate pain and suffering.

Assisted suicide – alternately referred to as medical aid in dying – means a procedure in which people take medications to end their own lives with the help of others, usually medical professionals. The term usually refers to physician-assisted suicide (PAS), which is an end of life measure for a person suffering a painful, terminal illness. Once it is determined that the person's situation qualifies under the physician-assisted suicide laws for that location, the physician's assistance is usually limited to writing a prescription for a lethal dose of drugs.

The Rights of the Terminally Ill Act 1995 (NT) was a controversial law legalising euthanasia in the Northern Territory of Australia, which was passed by the territory's Parliament in 1995. The Act was passed by the Northern Territory Legislative Assembly on 25 May 1995 by a vote of 15 to 10, received the Administrator's assent on 16 June 1995, and entered into force on 1 July 1996. A year later, a repeal bill was brought before the Northern Territory Parliament in August 1996, but was defeated by 14 votes to 11.

The right to die is a concept based on the opinion that human beings are entitled to end their life or undergo voluntary euthanasia. Possession of this right is often understood that a person with a terminal illness, incurable pain, or without the will to continue living, should be allowed to end their own life, use assisted suicide, or to decline life-prolonging treatment. The question of who, if anyone, may be empowered to make this decision is often the subject of debate.

Voluntary euthanasia is the ending of a person's life at their request in order to relieve them of suffering. Voluntary euthanasia and physician-assisted suicide (PAS) have been the focus of intense debate in recent years.

Suicide is a crime in some parts of the world. However, while suicide has been decriminalized in many countries, the act is almost universally stigmatized and discouraged. In some contexts, suicide could be utilized as an extreme expression of liberty, as is exemplified by its usage as an expression of devout dissent towards perceived tyranny or injustice which occurred occasionally in cultures such as ancient Rome, medieval Japan, or today's Tibet Autonomous Region.

Dignity in Dying is a United Kingdom nationwide campaigning organisation. It is funded by voluntary contributions from members of the public, and as of December 2010, it claimed to have 25,000 actively subscribing supporters. The organisation declares it is independent of any political, religious or other affiliations, and has the stated primary aim of campaigning for individuals to have greater choice and more control over end-of-life decisions, so as to alleviate any suffering they may be undergoing as they near the end of their life.

Exit International is an international non-profit organisation advocating legalisation of voluntary euthanasia and assisted suicide. It was previously known as the Voluntary Euthanasia Research Foundation.

The legality of euthanasia varies depending on the country. Efforts to change government policies on euthanasia of humans in the 20th and 21st centuries have met limited success in Western countries. Human euthanasia policies have also been developed by a variety of NGOs, most notably medical associations and advocacy organizations. As of 2023, euthanasia is legal in Belgium, Canada, Colombia, Ecuador, Luxembourg, the Netherlands, New Zealand, Portugal, Spain and all six states of Australia. Euthanasia was briefly legal in the Northern Territory between 1996 and 1997, but was overturned by a federal law. In 2021, a Peruvian court allowed euthanasia for a single person, Ana Estrada.

Child euthanasia is a form of euthanasia that is applied to children who are gravely ill or have significant birth defects. In 2005, the Netherlands became the first country since the end of Nazi Germany to decriminalize euthanasia for infants with hopeless prognosis and intractable pain. Nine years later, Belgium amended its 2002 Euthanasia Act to extend the rights of euthanasia to minors. Like euthanasia, there is world-wide public controversy and ethical debate over the moral, philosophical and religious issues of child euthanasia.

Euthanasia became legal in New Zealand when the End of Life Choice Act 2019 took full effect on 7 November 2021. It is illegal to "aid and abet suicide" under Section 179 of the New Zealand Crimes Act 1961. The clauses of this act make it an offence to "incite, procure or counsel" and "aid and abet" someone else to commit suicide, regardless of whether a suicide attempt is made or not. Section 179 covers both coercion to undertake assisted suicide and true suicide, such as that caused by bullying. This will not change under the End of Life Choices Act 2019, which has provisions on coercion of terminally ill people.

Laws regarding euthanasia or assisted suicide in Australia are matters for state and territory governments. As of November 2023 all states have implemented legislation creating an assisted suicide scheme for eligible individuals. These laws typically refer to assisted suicide as "voluntary assisted dying".

Assisted suicide is suicide with the aid of another person. In the United States, the term "assisted suicide" is typically used to describe what proponents refer to as medical aid in dying, in which terminally ill adults are prescribed and self-administer barbiturates if they feel that they are suffering significantly. The term is often used interchangeably with physician-assisted suicide (PAS), "physician-assisted dying", "physician-assisted death", "assisted death" and "medical aid in dying" (MAiD).

Both Euthanasia and Assisted Suicide are illegal in the United Kingdom and could be prosecuted as murder or manslaughter.

There are many religious views on euthanasia, although many moral theologians are critical of the procedure.

Euthanasia in Canada in its legal voluntary form is called Medical Assistance in Dying (MAiD) and it first became legal along with assisted suicide in June 2016 for those whose death was reasonably foreseeable. In March 2021, the law was further amended by Bill C-7 which to include those suffering from a grievous and irremediable condition whose death was not reasonably foreseeable. According to the Fourth Annual Report on MAID, there were 13,241 MAID deaths reported in Canada in 2022.

The Voluntary Euthanasia Party (VEP) was a minor political party in Australia, founded in early 2013 by Corey McCann to advocate for legislative change to allow voluntary euthanasia in Australia. The party's inception was strongly supported by Dr Philip Nitschke, director of Exit International and Richard Mills, then President of Dying with Dignity NSW.

<span class="mw-page-title-main">Sean Davison</span> South African scientist and author (born 1962)

Sean Davison is a New Zealand-born South African scientist and author. In 2010 he was arrested in New Zealand and charged with the attempted murder of his terminally-ill mother, Dr. Patricia Ferguson. As a result of his arrest and High Court trial, he became an international campaigner for changes to the law regarding assisted dying under legally-defined criteria. He is the founder and director of the pro-euthanasia organisation Dignity South Africa and served for five years as president of the World Federation of Right-to-Die Societies. Both organisations support the decriminalisation of voluntary euthanasia.

Assisted suicide is the ending of one's own life with the assistance of another. Physician-assisted suicide is medical assistance in helping another person end their own life for the purpose of relieving their suffering, and voluntary euthanasia is the act of ending the life of another, also for the purpose of relieving their suffering. The phrase "assisted dying" is often used instead of physician-assisted suicide by proponents of legalisation and the media when used in the context of a medically assisted suicide for the purpose of relieving suffering. "Assisted dying" is also the phrase used by politicians when bills are proposed in parliament. Assisted suicide is illegal under English law.

Western Australia was the second Australian state to legalise voluntary assisted dying, after Victoria. The Voluntary Assisted Dying Act 2019 was passed into law on 19 December 2019, and came into effect on 1 July 2021.

References

↑ "World Federation of Right to Die Societies: member organisations" . Retrieved 16 August 2020.
↑ "UK Society for Old Age Rational Suicide (SOARS) goes online - The World Federation of Right to Die Societies". 11 March 2010. Retrieved 1 August 2023.
↑ "Memorandum by the Voluntary Euthanasia Society" . Retrieved 16 August 2020.
↑ Otlowski, Margaret (1997). History of the Voluntary Euthanasia Society. ISBN 9780198259961 . Retrieved 16 August 2020.
↑ Kemp, N. D. A. (2002). "Merciful release" A history of the British Euthanasia Movement. ISBN 9780719061240 . Retrieved 16 August 2020.
↑ Otlowski, Margaret (1997). History of the Voluntary Euthanasia Society. ISBN 9780198259961 . Retrieved 16 August 2020.
↑ "Helping Dad die: a daughter's story" . Retrieved 16 August 2020.
↑ "UK Parliament Select Committee on Assisted Dying for the Terminally Ill Bill Minutes of Evidence" . Retrieved 16 August 2020.
↑ "Medical world divided over euthanasia" . Retrieved 16 August 2020.
↑ "Approaching Old Old booklet My Death My Decision" (PDF). Retrieved 16 August 2020.
↑ "Telegraph article- Should we force the terminally ill to travel abroad and pay 10000 for a painless death?" . Retrieved 16 August 2020.
↑ "World Federation of Right to Die Societies: member organisations" . Retrieved 16 August 2020.
↑ "The Guardian - Euthanasia and assisted dying rates are soaring. But where are they legal?" . Retrieved 16 August 2020.
↑ "The Guardian - Legalise assisted dying for terminally ill, say 90% of people in UK" . Retrieved 16 August 2020.
↑ "Assisted suicide: Paul Lamb renews bid for right to die" . Retrieved 16 August 2020.
↑ "Assisted Dying in the House of Commons" . Retrieved 16 August 2020.
↑ "Campaigners unite for right to die law" . Retrieved 16 August 2020.
↑ "My Death, My Decision's Annual Review (2019-2020)" . Retrieved 16 August 2020.
↑ "The 'forfeiture' rule and assisted dying – punishing compassionate families?" . Retrieved 16 August 2020.
↑ "Protecting Vulnerable People with an Extended Advance Decision" . Retrieved 16 August 2020.
↑ "Assisted dying campaigner ends life in Switzerland" . Retrieved 17 August 2020.
↑ "Help me fight for dignity in death by Phil Newby" . Retrieved 17 August 2020.
↑ "Paralysed Leeds man Paul Lamb loses 'right to die' case" . Retrieved 17 August 2020.
↑ "Supreme Court rejects right to die appeals" . Retrieved 17 August 2020.
↑ "Why we're campaigning for broader criteria for assisted dying in the UK" . Retrieved 17 August 2020.
↑ "Acclaimed Doctors Call Upon Parliament To Stop Ignoring Assisted Dying Reform" . Retrieved 17 August 2020.
↑ "My Death, My Decision's Annual Review (2019-2020)" . Retrieved 17 August 2020.
↑ "Clinicians should consider the evidence in difficult decisions about resuscitation" . Retrieved 17 August 2020.
↑ "My Death, My Decision Lectures" . Retrieved 17 August 2020.
↑ "About My Death, My Decision" . Retrieved 17 August 2020.