New report shows people with advanced or terminal illness support law change on assisted dying

The proposed law change could allow mentally competent, terminally ill adults with 6 months or less to live the option of an assisted death in the UK. 

During the summer we shared the survey YouGov and Dignity in Dying had produced with our community.

Over 200 people with Parkinson’s responded and shared their views on end of life care and assisted dying. Pancreatic Cancer UK and Fight Bladder Cancer UK also shared the survey with their communities.

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 today, ‘What Matters to Me: People living with terminal and advanced illness on end-of-life choices’. Read the full report.

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

• two-fifths (39%) say they have or would consider travelling abroad for an assisted death.

• 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%) say 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.

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. 

“While people with Parkinson’s, and their carers and families, have a wide range of views on end of life decisions, the most important thing is that everyone is able to have timely conversations and access to good quality information and support.

“Parkinson’s is incredibly complex and the advanced stages can be very difficult to cope with. These findings will help us to continue our work to ensure that people with Parkinson’s and carers are fully involved in their care planning, especially at the end of life.”  

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. 

“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.”

More information

Please read our policy position for what we think about end of life care and assisted dying.

Visit our information pages for support and advice on advanced Parkinson’s and preparing for end of life.