Medical Treatment, Miscarriages and Consent – Louise Austin

Earlier this month, Louise Austin presented a paper arising from research conducted on the Death before Birth project at the Socio-Legal Studies Association’s annual conference at Leeds University. Louise is a PhD candidate in Law at the Centre for Health, Law, and Society and Centre for Ethics in Medicine, University of Bristol, and has provided invaluable support to the project.

The paper, co-written with Sheelagh McGuinness, is provisionally titled ‘Medical Treatment, Miscarriages and Consent’. It explores a legislative gap concerning information provision and consent for disposal of pregnancy remains pre-24 weeks’ gestation and examines how case law could be used to overcome that gap. As Louise explains in her blog post on the SLSA website:

The paper arose out of research conducted as part of the Death Before Birth (DBB) Project, which examined the extent to which Human Tissue Authority (HTA) guidance on disposal of pregnancy remains has been incorporated into hospital policies. The guidance sets out different options for disposing of pregnancy remains and requires that women are informed of all options before their consent to disposal is sought. However, the DBB research revealed a wide variation between Hospital Trusts as to which options were offered, with women who miscarried at home often being excluded from information about disposal even when they had sought medical advice.

You can read her full post here.

Death Before Birth – Stakeholder Workshop 2018

The wintry weather might not have been on our side, but the Death Before Birth Stakeholder Workshop on the 28^th of February 2018 was a successful exchange of perspectives and insights between all the participants.

With over 30 participants, from medical doctors, midwives, and funerary industry professionals, to representatives of regulatory bodies and charities supporting people who have experienced pregnancy loss, as well as people who have themselves lost a pregnancy to miscarriage, termination, or stillbirth, the workshop brought together a variety of perspectives to discuss the complex issue of pregnancy loss.

The workshop began with a panel on experiences, where three women who have had experiences of miscarriage, termination and stillbirth eloquently told their stories, illustrating the multidimensionality and intricacy of each case. They highlighted key issues that concerned them about the process of decision- and choice-making with regards to the disposal of fetal remains and the cremation or burial of stillborn children.

The DBB research team followed with an update of the project’s progress and short introductions to the breakout sessions: one on communication, run by Jeannette Littlemore, and another on decision-making, run by Karolina Kuberska and Meera Burgess.

The breakout session on communication focused on the metaphors people use to talk about the experience of pregnancy loss – and how looking at these metaphors can give us insights into such experiences. The session on decision-making highlighted possible conflicts of priorities involved in offering bereavement care to people who have experienced pregnancy loss.

The final panel, “Professional support and policy: Actions for change”, was a discussion by Ruth Bender-Atik of the Miscarriage Association, Ross Jones from Sands, Brendan Day of the Federation of Burial and Cremation Authorities, and Adam Whittaker of the Human Tissue Authority. The panellists offered their reflections on issues raised in the workshop, as well as indicating possible directions for the future of bereavement care pathways following pregnancy loss.

The day provided a good opportunity for us to share our perspectives on this important issue.

Tweets from the day: #dbbworkshop2018

Death Before Birth Stakeholder Workshop

The Death Before Birth project team is organising a one-day event on Wednesday the 28^th of February 2018.

We will share some of our initial findings and talk to our partner organisations (the Human Tissue Authority, the Miscarriage Association, Antenatal Results and Choices, Sands) about possible applications of our findings as well as about future directions for policy and practice. The workshop will bring together people who have experienced different kinds of pregnancy losses as well as those who support them professionally in different contexts, such as bereavement midwives, funerary industry professionals, and support workers. Among other things, we hope to talk about challenges of losing pregnancy as well as providing care during and after such an event and about the principles of good communication.

We are very much looking forward to this event!

Would you like to join us? There are still a few places left! Find out more and register here: https://goo.gl/TqHThi

Shifting States Anthropology Conference, 11-15 December 2017

Shifting States – Tripoli, 2011, Luis Cruz Azaceta (Acrylic, prismacolor pencil, shellac on canvas 24 x 36 inches)

Last week, our team member Karolina Kuberska attended the annual Association of Social Anthropologists of the UK and Commonwealth (ASA) conference. This year, the ASA joined forces with its equivalent organisations in Australia (AAS) and New Zealand (ASAANZ) and held the event at the University of Adelaide, Australia.

The University of Adelaide

Conference programme

The theme of the conference focused on recent anthropological theorising on the state. Over 400 participants discussed various ways in which the state is engaged in people’s everyday lives and engages with peoples as stakeholders. Topics of panels ranged from eating to health, from resistance to victimhood, from sustainability to mining rights, among others. Karolina presented a paper in a panel ran by Dr Susan Hemer (University of Adelaide) and Dr Anthony Heathcote (Monash University, Melbourne) entitled “Death and grief: changing states of being and continuing relationships” that considered the end of life, and the changing states of being that entails.

Karolina presented a paper entitled “Parenthood following miscarriage: the kinship consequences of death before birth” that examined the significance of the lack of legally required miscarriage certificates for the sense of parenthood among people who lost pregnancies prior to week 24 of gestation in England. The paper focused on the discrepancy between legal requirements of registering pregnancy loss (only stillbirth requires legal certificate that includes names of parents) and messages sent by pregnancy loss support organisations and hospitals that consider all losses as potentially significant. You can read the abstract below.

The presentation was well received and Karolina was asked many interesting follow-up questions.

Scenes of Adelaide

Scenes of Adelaide

Adelaide is a beautiful city, and there are koalas living in the nearby Cleland Wildlife park. (Follow the links to see videos of a koala eating eucalyptus, or a kangaroo jumping.)

You can read the abstract below:

The sense of parenthood following a miscarriage is questioned by death and nourished by grief. The ambivalence of this kind of parenthood has been addressed by various researchers who examined the difficulties of displaying parenthood to others (Murphy & Thomas 2013), conflicting understandings of the loss (Komaromy et al. 2007; Malacrida 1999), or the paradoxical nature of materiality and immateriality of memories (Layne 2003), among others. Miscarriages, unlike stillbirths, do not require the issuing of legal certificates in England, which calls into question the formal parental status of those who have lost a pregnancy. Simultaneously, care and support following pregnancy loss is structured around recognising the feelings of bereaved parents. This paper aims to explore the ambiguities of parenthood following a miscarriage in England, paying particular attention to the impact of the lack of legal recognition on the sense of parenthood. An analysis of interviews with people who experienced miscarriage and those who cared for them, as well as an analysis of resources directed at these groups (leaflets, books, support guidelines, etc.) help to illuminate the challenges of navigating the precarious sense of parenthood that is deeply anchored in the grief caused by the absence of a child and the unfulfillable dreams that may result from a pregnancy loss. By exploring the implications of lack of legal requirements for miscarriage certificates, this paper uses understandings of kinship as legal and social categories to examine the paradox of parenthood rooted in pregnancy loss.

Human Tissue Authority Annual Conference, London, 27 June 2017

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.

The final panel, with Sheelagh McGuinness on behalf of the DBB research team, far left

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.