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

Dignity in Dying

5 min read Member content

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.”  


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