Danielle and Sheelagh were grateful to Caroline Browne, Head of Regulation, at our partner organisation the Human Tissue Authority, for the invitation to attend their annual conference in London. The morning sessions included reports from the various members of the HTA Board on a range of issues, policy, practice and research with which the HTA engages: the scope of the HTA’s work is impressively broad and deep. Indeed, research conducted about public perception of the HTA’s purpose reveals that most members of the public are unaware of the Authority’s broad remit. The work of the HTA during 2016/17 is discussed in the annual review publication for 2016/17: ‘Protecting public confidence; ensuring professional standards’.
The afternoon panels featuring a cross-section of guest speakers were focussed around the theme ‘Conversations about death and dying.’ The range of professionals speaking to the topic cleverly indicated the involvement of the HTA and the commitment of both Board and staff to not only sensitive and ethical treatment of human tissue across the life span, but also the Authority’s contribution to the creation of appropriate care pathways for terminally ill people and to support for the bereaved. Many of the presenters spoke about issues that resonate with the DBB project. A lively presentation by Dr Susy Lishman, President of the Royal College of Pathologists, emphasised the importance of clear and open communications between pathologists and the general public in order to achieve a better understanding about the role of post-mortems, for example. From a different perspective, Dr John Troyer, Director of the Centre for Death and Dying at the University of Bath, described a number of projects dealing with death ‘the thing we are always rediscovering’. A provocative question – ‘what do you want done with your dead body?’ – underlined our society’s general reluctance to talk about death.
The final panel, featuring Sheelagh McGuinness on behalf of our own research team, explored conversations about death and dying from both first-hand perspectives and from the standpoint of those who support the bereaved. A moving clip from the film of the play Homeward Bound by Brian Daniels illustrated how medical professionals might be better trained to have ‘brave and important conversations’ with people who are terminally ill. Inspired by Lesley Goodburn’s experience of supporting her partner through his final illness, the play powerfully conveys the necessity of honesty in patient-medical staff relationships as well as the need for sensitivity towards the feelings of friends and family. Another of our partner organizations, SANDS, was represented on this panel by CEO Clea Harper who again emphasised the importance of robust training for medical professionals. She noted that only 46% of health care professionals are trained in how to talk to bereaved parents, and that training is usually under 1 hour in length. As our own research is beginning to suggest, such brief training only begins to address the complexities of baby loss and the needs of the bereaved.
Wrapping up the day, the HTA’s Chief Executive Allan Marriott-Smith outlined the three dimensions of discussion and debate that had characterised the conference – the societal, the professional and the personal. Together these spheres create the public and private contexts in which conversations about death, dying and grief should occur: contexts in which honesty, clarity and hope should, ideally, all play a part.
You can watch footage from the conference using the playlist below.