7 in 10 people with advanced or terminal illness support law change on assisted dying

• New YouGov research also reveals two-thirds would be pleased to have the option of assisted dying alongside end-of-life care

• Two-fifths have or would consider travelling abroad for an assisted death

New figures released today (Tuesday 19 November 2019) by YouGov reveal that more than seven in ten (73%) people with an advanced or terminal illness would support a change in the law on assisted dying to allow mentally competent, terminally ill adults with six months or less to live the option of an assisted death in the UK. The survey also found that around two-thirds (64%) would be pleased to have the option of assisted dying for themselves alongside good end–of-life care, and two-fifths (39%) say they have or would consider travelling abroad for an assisted death.

The results of the YouGov survey of 502 adults diagnosed with advanced cancer, Parkinson’s, motor neurone disease, chronic obstructive pulmonary disease, multiple system atrophy or progressive supranuclear palsy are published in a new report out today, ‘What Matters to Me: People living with terminal and advanced illness on end-of-life choices’.

A decision on the Phil Newby v Secretary of State for Justice case is also due to be handed down today. Mr Newby, 49, a father-of-two from Rutland, was diagnosed with motor neurone disease in 2014 and is seeking permission to bring a judicial review challenging the blanket ban on assisted dying. A decision is due to be handed down at the High Court at 2pm on Tuesday 19 November 2019.

The research, commissioned by Dignity in Dying, was inspired by James Hughes-Hallett, CMG, businessman and philanthropist, who died of pancreatic cancer in October 2019.

Writing in July, James, said:

“My experiences as a patient have made me realise that the voices of terminally ill people need to be highlighted and strengthened in the debate around end-of-life care and assisted dying. I am concerned that the current dialogue seems dominated by the views of doctors and politicians, to the extent that the opinions and deeply felt wishes of terminally ill patients and their families are not being given their due weight and respect.”

The survey also found that:

• Over half (58%) of people with advanced or terminal illness disagreed that death and dying was a taboo subject for them.
• Despite this, fewer than one in five (16%) said they have had a discussion with their doctor about what might happen as their condition progresses, particularly at the end of life.
• Respondents associated a ‘good death’ with being pain-free, but around two-thirds (64%) felt they did not have enough information and support to achieve this.
• Although more than four in ten (43%) people with advanced or terminal illness knew of treatments they would like to refuse at the end of life, such as cardiopulmonary resuscitation (CPR) or tube feeding, just one in ten (12%) had recorded this in an Advance Decision to Refuse Treatment (also known as a Living Will).

Patrick Wymer, 55, who has stage four bowel cancer, said:

“I have gradually come to terms with the fact that my time is limited, but why should I accept the prospect of a slow decline and pain? If that turns out to be the case, I believe I’ll reach a tipping point where I would wish to die on my own terms. Having the ability to determine for myself when that time has come and being safe in the knowledge that my life can end calmly, quickly and pain-free would be a source of great comfort, and it would also hugely enhance my quality of life today.

“This report clearly shows that I am not alone. Terminally ill people should be at the very centre of the assisted dying debate and I hope the charities that support us from diagnosis to the end of life will take note.”

Sarah Wootton, Chief Executive of Dignity in Dying, said:

“This new research is a powerful insight into what matters to terminally ill people. Far from death and dying being ‘taboo’, those facing the end of their life appreciate honest and open conversations about their options. They clearly need more support to achieve a ‘good death’, and want to see a safeguarded assisted dying law alongside good palliative care. Until this change occurs, some would even resort to travelling hundreds of miles at huge personal cost to make use of this option abroad.

“The views of dying people must be at the heart of everything we do on end-of-life care, from improving support for advance care planning to policies on assisted dying. The Royal College of GPs is currently surveying its members on this issue and the British Medical Association has committed to do the same. I urge condition-specific charities to join them and amplify the voices of those they support.”

Dignity in Dying would like to thank Pancreatic Cancer UK, Parkinson’s UK and Fight Bladder Cancer UK, who helped to disseminate the survey to the people they support.

Lydia Makaroff, CEO of Fight Bladder Cancer said:

“The views of people with a terminal diagnosis deserve to be heard. As patient-led charities, we must take the time to listen. This research shows that there are improvements to be made to existing end-of-life care, particularly around communication and advance care planning. We also cannot ignore the fact that many people with a terminal diagnosis stated their support for a change in the law to allow assisted dying as one possible choice for mentally competent terminally ill adults. Disease organisations can no longer shy away from this debate.  We have a duty to listen to our service users, and I hope other charities will consider asking the people they support for their views.”

Laura Cockram, Head of Policy and Campaigns at Parkinson’s UK, said:

“The findings of this report echo our own insights, that people with Parkinson’s want to be fully informed and involved in decisions about their care at every stage of their condition. We will use these findings to ensure that people with Parkinson’s and carers are fully involved in their care planning, especially at the end of life.”

*ENDS*

Notes to Editor:

For further information and interview requests please contact Ellie Ball at ellie.ball@dignityindying.org.uk / 0207 479 7732 / 07725 433 025 or Tom Davies at thomas.davies@dignityindying.org.uk / 0207 479 7734.

All figures from YouGov Plc. Total sample size was 502 adults in the UK aged 18+ who have been diagnosed with advanced cancer, Parkinson’s, motor neurone disease (MND), chronic obstructive pulmonary disease (COPD), multiple system atrophy (MSA) or progressive supra nuclear palsy (PSP). Fieldwork was undertaken between 30th August – 22nd September 2019. The survey was carried out online. The sample was drawn from a combination of the YouGov panel and open links shared externally by Dignity in Dying, Pancreatic Cancer UK, Parkinson’s UK and Fight Bladder Cancer UK.

The following figures, also included in this report, were released by YouGov on Tuesday 5 November 2019:

• Four in five (83%) people with terminal or advanced illness think that organisations representing doctors should either have a neutral or supportive stance on assisted dying.
• Four in five (85%) said their trust in doctors would either stay the same or improve under a change in the law to allow assisted dying as a choice for terminally ill, mentally competent adults (whereby two doctors would independently assess whether the person is of sound mind and terminally ill with six months or less to live).

The law on assisted dying in the UK

• Assisted dying is prohibited in England and Wales under the Suicide Act (1961), and in Northern Ireland under the Criminal Justice Act (1966) which states that anyone who “encourages or assists a suicide” is liable to up to 14 years in prison.
• There is no specific crime of assisting a suicide in Scotland, but it is possible that helping a person to die could lead to prosecution for culpable homicide.
• In a House of Commons in a debate in July and at Justice Questions in October, MPs have called on the Government to initiate a call for evidence on the damage being done to dying people, their families and public services by the blanket ban on assisted dying.

Healthcare professionals

• The Royal College of General Practitioners has launched a survey of its 53,000 members following an announcement in June 2019.
• The College last consulted its members on the issue in 2013. The result, announced in February 2014, was that the College should not change its stance and as such its current position is that it is opposed to a change in the law on assisted dying.
• The British Medical Association announced in June 2019 that it will survey its 160,000 members on assisted dying for the first time.
• The BMA is currently opposed to a change in the law on assisted dying.
• The Royal College of Physicians dropped its longstanding opposition to assisted dying in March 2019 following a survey of its 36,000 members.

Phil Newby v Secretary of State for Justice

• Phil Newby, 49, from Rutland, has motor neurone disease and has launched a judicial review challenging the blanket ban on assisted dying. He is asking the Courts to undertake a “detailed examination of the evidence” to determine whether the current law is compatible with his human rights.
• Following a permissions hearing on Tuesday October 22 2019, a decision is due to be handed down at the High Court on Tuesday 19 November 2019 at 2pm.
• Phil’s case follows that of Noel Conway, a 69 year old man from Shropshire who also has motor neurone disease and launched a judicial review challenging the current law on assisted dying. The Supreme Court rejected his case in November 2018, acknowledging that assisted dying is an ‘issue of transcendent public importance’ and ‘touches us all’.

International developments

• Assisted dying as an option for terminally ill, mentally competent adults in their final months of life is legal in ten US jurisdictions: Oregon (1997), Washington, Vermont, Montana, the District of Columbia, California, Colorado, Hawaii, New Jersey and Maine (June 2019).
• Victoria became the first Australian state to legalise assisted dying for terminally ill people in June 2019. In Western Australia the Voluntary Assisted Dying Bill was recently passed by the state’s Lower House and will now be considered by the Upper House (Legislative Council).
• Canada legalised medical aid in dying (MAID) in June 2016. As a result of the Canadian Supreme Court’s judgment in Carter v Canada in February 2015, the Canadian government introduced assisted dying legislation in June 2016.
• New Zealand will put an End of Life Choice Bill to a public referendum in 2020, after the legislation passed third reading on Wednesday 13 November 2019.

About Dignity in Dying

• Dignity in Dying campaigns for greater choice, control and access to services at the end of life. It campaigns within the law to change the law, to allow assisted dying as an option for terminally ill, mentally competent adults with six months or less to live – something supported by 84% of the public. (Populus, 2019)
• Dignity in Dying does not provide practical assistance or advice in ending life, nor does it provide enquirers with the contact details of organisations who do so.