Impact case study database

The Cardiff research achieved impact as part of a collective movement (working alongside families and practitioners) that led to legal and clinical practice reform. The research impacted on these reforms through: cultural interventions (art and mass media); creation of resources for families; patient advocacy and support for families facing court cases; delivering training; membership of working parties and professional guideline development groups. Through this work, Kitzinger ensured that the research – according to Victoria Butler-Cole QC, a leading barrister in the field – “directly contributed to the dramatic and positive evolution of the law and practice over the last seven years concerning the treatment of people with prolonged disorders of consciousness” [5.1].

4.1 Media coverage and new cultural representations

Kitzinger worked with five artists to develop research/art collaborations about prolonged disorders of consciousness, including a theatre performance dramatizing the interview materials, art installations, and digital stories. Evaluation of a touring exhibition of this work combined with talks (six venues across England and Wales, events attended by over 600 people) showed increased knowledge of end-of-life decision-making (on average from 3.3 to 4.6 – an average increase of 1.3 points on a 5 point scale), as well as enriched understanding of emotional and ethical complexities [5.2, p.10 ].

In addition, Kitzinger worked with the media to help contextualise the legal and medical ramifications of disorders of consciousness and to increase public understanding of preparing for the end-of-life. For example, she was interviewed on main evening news bulletins (BBC and Channel 4), the Today programme and the Victoria Derbyshire show; co-produced/presented a BBC Radio Wales programme on Advance Decisions (‘living wills’); and gave a 20 minute interview for Radio 4’s PM programme on end-of-life planning. Compassion in Dying, the charity which supports people to write Advance Decisions, report that the interview for Radio 4’s PM led to a 400% increase in calls to their helpline and over 10,000 visits to their website [5.2, p.21 ].

Kitzinger also co-produced and presented BBC Radio 3’s Coma Songs – a combination of family testimony, especially commissioned poetry and soundscapes (broadcast 2014 and 2015, attracting over 100,000 listeners **[5.3]**). Co-producer Llinos Jones stated that it “established new forms of cultural representation” and was *“entirely prompted and shaped by Jenny’s research into prolonged disorders of consciousness …Jenny’s expert knowledge of a wide range of families’ experiences allowed sterile issues to be brought to life…[Coma Songs] opened up new ways of thinking for our audiences by challenging understanding of what it means to be in a vegetative or minimally conscious state,…contextualising Hollywood romanticisation and media stereotypes of these conditions, and sharing insight into families’ journeys and the social, clinical and legal context”* [5.3].

4.2 Supporting families

Funding from the ESRC [G3.2], enabled the expansion and translation of the initial research into an online resource for families of vegetative and minimally conscious patients on the Healthtalk.org site. This website – a collaboration between the Dipex charity and Oxford University – supports new data collection and the translation of research into ‘Information Standard’ certified and accessible information to help patients and families to understand a wide range of health conditions (and to counteract problematic online sources). The resource on disorders of consciousness (launched in September 2014) addresses 39 topics (from initial injury to end-of-life decisions) and includes 90,000 words and 250 video clips. Professor Derick Wade, a consultant in neurological rehabilitation, described it as a combination of “medically/legally accurate information with the vividness, intimacy and honesty of the research interview material, all framed systematically through the themes identified in your [Kitzinger’s] research” [5.4].

Within a year of launch the resource made Cardiff joint-runner up for the Guardian’s University 2015 awards in the ‘Research Impact’ category. It also won the 2015 ESRC award for ‘Outstanding Impact on Society’ and the British Medical Association award for ‘Information about Ethical Issues’ [5.5]. The resource is promoted as the go-to support for families by major rehab/care centres across the UK and more widely [5.4, 5.5] and has been used by over 42,700 unique users, repeat visiting the site over 420,000 times. Three quarters of users come from the UK, USA, India, Canada and Australia, with others from 100 countries across Europe, Asia, and Africa [5.5].

Feedback from families and clinicians who used the site demonstrates that the resource promoted improved decision-making and staff-family communication [5.5]. For example, the wife of one patient wrote that healthcare staff “don't really know what we go through emotionally and practically. Research like this not only helps the families but gives the professionals the opportunity to look beyond the patient to the whole family” [5.5] Professor Wade, routinely recommends the resource in his clinical practice as he found it “enabled families to find new ways of understanding”; “is crucial in reaching patients in non-specialist care homes, who would otherwise lack any expert input” and helps clinicians “to gain insights into family experiences and to realise what a partial view they may gain from relying on their clinical experience alone” [5.4].

4.3 Influencing legal and practice reform

The Cardiff research impacted on law and clinical practice through top-down and bottom-up interventions. Examples of ‘top down’ include the researchers being invited to present at the annual training day for High Court judges responsible for these types of cases. ‘Bottom up’ interventions include how the Healthtalk resource empowered families to advocate for relatives. For example, a patient’s wife who had struggled over four years to get clinicians to engage with strong evidence that her husband would not want to be kept alive indefinitely commented that the Healthtalk resource helped her understand the process and push for a proper clinical review, and was: “ fundamental in making sure that Chris’ best interests were realised. Without Professor Kitzinger’s research and dedication to sharing her expertise, Chris would still be lying in that care home in PVS [permanent vegetative state], being turned every four hours” [5.6].

Similarly, the sister of a woman in PVS for 33 years, found the research invaluable [5.5]. Having gone over three decades without guidance for decision-making, she stated that: “Finding the Cardiff University resource was a huge relief; we felt understood and it provided so much information and context…This empowered us to act – to channel our utter devotion to Cathy to ensure decisions were taken in her best interests, considering her as an individual. She is now finally at peace” [5.5].

Wade, an expert medical witness in legal cases, stated that the accessibility of the research was “essential in bringing some of these cases to fruition in the Court of Protection…many of these cases would not have happened without you [Kitzinger and the team]” [5.4]. The Cardiff team linked families to pro bono expertise, supported them with getting the cases to court, and provided research evidence to legal and clinical teams. Cases influenced by this work, as evidenced by testimonials from a practicing barrister [5.1] and the British Medical Association [5.7a], include:

• a case in which the judge made a clear declaration that delays in cases reaching court were inimical to patient’s best interests ( Cumbria NHS Clinical Commissioning Group v Miss S and Ors [2016] EWCOP 32) [5.7a];

• a case where no best interests review of a patient in a permanent vegetative state had been held for over two decades ( Health board v CL) [5.7a];

• a high-profile judgment in which priority was given to the patient’s prior expressed wishes (as reported by family and colleagues) over the wishes of his clinical team ( Briggs v Briggs [2016] EWCOP53) [5.1, 5.7a];

• the first ever hearing for court-approved withdrawal of a feeding tube from a patient in a minimally conscious state ( Re N [2015] EWCOP 34) [5.7a].

These were an important part of sustained challenges to how patients were being treated and created an environment in which the requirement for mandatory court applications was debated by stakeholders, including health professionals, barristers, and judges. This increased recognition of the problems and culminated in a Supreme Court hearing : Mr Y (An NHS Trust v Y – [2018] UKSC 46 [5.1]. Cardiff research on the unintentional harms caused by mandatory judicial scrutiny was cited in formal written submissions to the Court, and part read out by the Counsel for the Official Solicitor. The Court judgment removed the mandatory requirement to obtain court authorisation to withdraw feeding tubes from patients in vegetative or minimally conscious states.

Dr John Chisholm, British Medical Association, said that the judgment “removed the stigma around and barriers to families raising the question of whether continuation of clinically-assisted nutrition and hydration was what their relative would have wanted” and highlighted that clinicians must ensure that treatment is “in their patients’ best interests” [5.7b]. It also “exposed the extent of conscientious objection among clinicians and allowed the profession to address the problem” and “allowed funds that were going to court cases to revert to healthcare” [5.7b].

Victoria Butler-Cole QC, a barrister involved in many of these cases, confirmed that without the input of the researchers, the Supreme Court judgment would “not have happened at all” and that the research led to “radical improvements in timely and robust best interests decision making for the tens of thousands of patients currently in a prolonged disorder of consciousness” [5.1]. The “change in the legal landscape...will ensure that this positive impact is realised for all future such patients, their families and clinical teams” [5.1].

4.4 Improving clinical practice

The research led to “cultural transformation” among clinicians and “a sea change in how therapy teams now approach treatment” [5.4]. This has been achieved partly through making the work accessible to healthcare professionals, e.g. giving invited lectures to over 5,000 professionals in this REF period and delivering online training to over 1,300 trainee or practicing professionals with documented impact on knowledge and understanding [5.2]. It was also achieved by impacting on policy documents and briefings e.g. the research informed a House of Lord's report on the Mental Capacity Act 2014 and a Parliamentary Office of Science and Technology briefing sent to all MPs in 2015 [5.2]. In parallel with this the research helped shape new clinical guidance.

Kitzinger served on the core editorial team for the revised Royal College of Physicians (RCP) national clinical guidelines (2020) on ‘prolonged disorders of consciousness following sudden onset brain injury’ [5.8] and wrote an appendix on the role of families. The guidelines recommend the Healthtalk resource and cite six of Kitzinger’s research outputs. These outputs **[**including 3.2, 3.4, 3.6] informed the RCP recommendations including the importance of: training staff on the law around best interests decision making; providing high quality information and support to families; and holding regular reviews of treatment decisions. Professor Wade, a member of the development group, confirmed that the Cardiff research “has been an evidential goldmine” and noted that "the rigour with which you’ve [Kitzinger] documented patterns of outcome and what these mean for people’s lives has countered reliance on personal experience, helped shape professional guidelines…and meant we’ve all had to reassess our practice” [5.4].

Kitzinger also sat on the expert consultative group for the British Medical Association (BMA)/RCP to develop 2018 guidance for decision-making about feeding tubes for adults who lack the capacity to consent. Dr Chisholm, Chair of the BMA’s working party on Clinically Assisted Nutrition and Hydration, said: “The Cardiff research has been important not just for the typical vegetative state or minimally conscious state patients … but also for a broad spectrum of patients, including frail patients with multiple co-morbidities who suffer a severe stroke or patients with a progressive neurodegenerative condition – all of whom are covered by the BMA/RCP (2018) guidance. The direct impact of their research, and its impact via the court cases building on their work, thus has both deep significance and a scope that expands well beyond the original focus” [5.7]. The research and impact trajectory of this work is continuing to expand including via a 2021 ESRC studentship (supervised by Kitzinger) on “ The Role of Journalists in Reporting End of Life Decisions: Questions of Ethics, Law and Democratic Citizenship”.