Written evidence submitted by Dignity in Dying (HSC0808)

Dignity in Dying Dignity in Dying campaigns for greater choice and control at the end of life. We advocate providing terminally ill, mentally competent adults with the option of an assisted death, within strict legal safeguards, and for universal access to high quality end-of-life care.

We welcome the Department of Health and Social Care White Paper’s recognition of the value of and potential opportunities for data collection and the commitment to bringing forward measures to improve public safety. This submission will focus on how data collection could be utilised in the future to plug a gap in our understanding of the lack of safety in the current laws around end-of-life choice.

Legal context In England and assisting a suicide is a crime under Section 2 of the . Those convicted could face up to 14 years in prison. In February 2010, the Director of Public Prosecutions (DPP) issued a prosecuting policy on cases of ‘Encouraging or Assisting Suicide’. It covers actions that happen in England and Wales, even if the suicide happens abroad. The DPP’s policy means a prosecution is less likely if the person made a voluntary, informed decision to end their life, and if the assister was wholly motivated by compassion. This policy did not change the law and it does not provide any guaranteed protections from prosecution.

Consequences As a result of the restrictions the current law places on choice at the end-of-life and the uncertainty that remains despite the DPPs prosecution policy, many dying people take matters into their own hands. In essence, the ban on assisted dying does not stop dying people from exercising control over their deaths, it simply encourages such practices to exist out of sight.

In November 2020 the Secretary of State for Health and Social Care confirmed that travel restrictions put in place because of the Covid-19 pandemic would not, in theory, prevent someone from being able to travel to Switzerland for an assisted death.1 While acknowledgement of the difficult circumstances that dying people can find themselves in was welcome, this clarification of the law will have been of little comfort to those who feel no other option but to travel overseas for an assisted death, as it is a journey which our research has shown can be emotionally and financially difficult even under relatively normal circumstances.2 Prior to the pandemic, every week somebody travelled from the UK to Switzerland to have an assisted death.

In addition to travelling overseas, many dying people, as a last resort, end their own lives in this country, often in violent and traumatic ways.3

In response to a written question in the House of Lords about this issue, National Statistician Sir Ian Diamond provided data from the Office for National Statistics (ONS) that showed that in over 14% of suicides registered in 2019 a life-limiting illness was listed as a contributory cause.4 This builds on a 2014 estimate that over 300 suicides a year in England involve people with a , based on data collected by Dignity in Dying via a Freedom of Information Request to Directors of Public Health.5 It also reflects similar data from overseas. In Victoria, Australia, the Coroners Court contributed evidence to a parliamentary inquiry into end-of-life choices which showed that 8.3% of suicides recorded between 2009 and 2013 involved people with an irreversible decline in physical health. The inquiry concluded that the ‘prohibition of assisted dying is causing some people great pain and suffering. It is also leading some to end their lives prematurely and in distressing ways.’6 What needs to change We encourage robust data collection around all aspects of end-of-life care, though we particularly want to draw attention to the need to better understand the phenomenon of dying people ending their own lives in this country. These deaths are harrowing for individuals and can be devastating for loved ones, emergency first responders and the clinicians responsible for their care.

Furthermore, we have spoken to many bereaved relatives who believe that registering these deaths as suicides without further explanation obscures part of the picture of what happened to their loved ones and why. Complete data on suicides where the person who died had a life-limiting illness would facilitate more open conversations about the needs of terminally ill people.

We believe that the Government must ensure existing data on how many people with a terminal illness end their own lives is investigated. This could include publishing further and more detailed quantitative data held by the ONS. It could also mean qualitative studies with the ONS and coroners to explore the circumstances in which it has been concluded that a terminal illnesses was a contributory cause in a person’s suicide. Sir Ian Diamond’s answer to the House of Lords question indicated there was potential for further research in this area to be conducted. The legislation that will follow the White Paper offers an ideal opportunity to do this.

Going forward, as part of discussions about how data can be used to improve health and social care, we call on the Government to consider how it can pro-actively collect data on how many people diagnosed with a terminal illness end their own lives each year. This should also include proposals to routinely publish this data.

Taking these actions will highlight gaps in funding, support and protections for dying people, informing ongoing parliamentary and societal debates about how to improve end-of-life care as well as legislative proposals to expand choice at the end of life.

1 House of Commons, Urgent Question - Coronavirus Regulations: Assisted Deaths Abroad, Volume 683: debated on Thursday 5 November 2020: https://hansard.parliament.uk/commons/2020-11- 05/debates/A10D8E3C-C301-4163-890F-775B6E48F192/CoronavirusRegulationsAssistedDeathsAbroad 2 Dignity in Dying, The True Cost: How the UK outsources death to Dignitas, 2018 : https://cdn.dignityindying.org.uk/wp-content/uploads/DiD_True_Cost_report_FINAL_WEB.pdf 3 ‘Man, 40, took his own life in Plymouth city centre after being denied ’, Plymouth Herald, 16 February 2018: https://www.plymouthherald.co.uk/news/plymouth-news/man-40-took-life-plymouth- 1224511 4 Suicide, Question for Cabinet Office, UIN HL13019, tabled on 4 February 2021: https://questions- statements.parliament.uk/written-questions/detail/2021-02-04/hl13019 5 Dignity in Dying, A Hidden Problem: Suicide by terminally ill people, 2014: https://cdn.dignityindying.org.uk/wp-content/uploads/Research_FOI_Suicides.pdf 6 Parliament of Victoria, Legislative Council, Legal and Social Issues Committee, Inquiry into end of life choices Final report, 2016: https://apo.org.au/sites/default/files/resource-files//apo-nid64524.pdf

March 2021