Refractory cachexia and truth-telling about terminal prognosis; A qualitative study

The purpose of this paper is to examine the consequences that medical practitioners’ decisions about whether or not to be candid about terminal prognosis have for those suffering from refractory cachexia and their families. It presents the findings of a qualitative study which used focus groups and semi-structured interviews of a volunteer sample of doctors, nurses and dieticians in a cancer centre of a large teaching hospital in Northern Ireland. Respondents reported that some physicians tended to avoid discussing terminal prognosis in a direct manner with their patients. Nurses and dieticians tended to be reluctant to engage in conversations about weight loss with patients with cachexia. One of the reasons they reported for their lack of acknowledgement of weight loss concerned the close association between refractory cachexia and terminal prognosis. Because they viewed the telling of bad news as an exclusive prerogative of medical practitioners, they did not feel in a position to discuss cachexia because they were concerned that this had the potential to raise end-of-life issues that lay outside the boundaries of their professional role. This meant patients and their families were provided with little information about how to cope with the distressing consequences of cachexia.

The legacy of Hillsborough:Liberating truth, challenging power

In April 1989, ninety-six men, women and children, supporters of Liverpool Football Club, died in a severe crush at an FA Cup semi-final at Hillsborough Stadium, Sheffield. Hundreds were injured and thousands traumatised. Within hours, the causes and circumstances of the disaster were contested. While a judicial inquiry found serious institutional failures in the policing and management of the capacity crowd, no criminal prosecutions resulted, and the inquests returned ‘accidental death’ verdicts. Immediately, the authorities claimed that drunken, violent fans had caused the fatal crush. Denied legitimacy, survivors’ accounts revealed a different story criticising the parlous state of the stadium, inadequate stewarding, negligent policing, failures in the emergency response and flawed processes of inquiry and investigation. Reflecting on two decades of research and contemporaneous interviews with bereaved families and survivors, this article contrasts the official discourse with those alternative accounts – the ‘view from below’. It demonstrates the influence of powerful institutional interests on the inquiries and investigations. It maps the breakthrough to full documentary disclosure following the appointment of the Hillsborough Independent Panel, its research and key findings published in September 2012. The campaigns by families and survivors were vindicated and the fans, including those who died, were exonerated. The process is discussed as an alternative method for liberating truth, securing acknowledgement and pursuing justice.

Historical lies and fictional truth, the literary right fighting (for) the truth after WWII

War and Memory Research Seminar
QUB, Belfast, December 2009