Research Priorities Relating to the Debate on Assisted Dying: What Do We Still Need to Know? Results of a Modified Delphi Technique

Rodgers et al. (2016) full text summary PDF

For which topic were research priorities identified?

assisted dying

In which location was the research priority setting conducted?

Europe - United Kingdom

Why was it conducted at all?

The debate around any proposed legal changes is strongly polarised, and a number of opposing arguments have been put forward. Many arguments focus on moral, ethical, religious or legal issues and are often strongly informed by pre-existing beliefs. Far fewer arguments are based on objective empirical evidence or else evidence is used only selectively. As such, debates often end in impasse. Some key areas of debate include individual autonomy, patient choice, the roles of doctors and relatives in assisting death, the nature of ‘unbearable' illness, the impact of availability and efficacy of palliative care, the effectiveness of safeguards to protect vulnerable people and the extent of ‘unseen' assisted dying/suicide within the current system. Each of these raises questions about ‘what we know' about the current state of affairs, whether there is a need for further objective evidence to illuminate the debate on assisted dying and, if so, what focus and form this evidence might take.

What was the objective?

to identify the main areas of uncertainty and subsequent research priorities to inform the ongoing debate around assisted dying

What was the outcome?

a ranking list of 10 research questions

How long did the research prioritization take?

No information provided.

Which methods were used to identify research priorities?

Delphi

How were the priorities for research identified exactly?

Step 1: Delphi round 1: participants invited to suggest areas of uncertainty that could be addressed by research by asking: In this first stage, we would simply like you to suggest - as concisely as possible - where you think there is a need for either new evidence or a better summary of the existing evidence in this area., 102 research questions suggested. Step 2: data processing: thematic analysis: 13 topics identified. Step 3: Delphi round 2: participants were asked to rate importance of each of the 85 research questions

Which stakeholders took part?

Health and social care professionals, researchers, campaigners, patients and carers. Delphi round 1: 30 participants. Delphi round 2: 39 participants.

How were stakeholders recruited?

Experts and parties interested in the subject of end-of-life care and/or assisted dying (clinicians, charities, religious groups, specialist research groups, think tanks, pressure groups, patient and carer representatives) were approached to participate. through searches of academic, government and mass media publications. In addition, proassisted and antiassisted dying groups were contacted directly. These sources identified a range of groups and individuals who have previously shown an interest in the legal status of assisted dying in the UK. A total of 110 individuals and organizations were initially invited to participate. An additional 16 contacts were suggested by first-round respondents, and a further 31 were suggested by second round respondents, all of whom were also invited to participate.

Were stakeholders actively involved or did they just participate?

Stakeholders were mere participants of the research prioritization process; they were not actively involved in the process.