Lisa Guntram

Dominant ideas and structures at the core of modern medicine create a kind of “ideal patient”. Processes of standardisation, normalisation, and patient activation suit certain patients but create problems for some bodies, needs, and ways of being.

This series of art works is a commentary on how medicine creates its own “difficult patients”. It can also serve as an opportunity for critical reflection on how care professionals and patients, together, use their knowledge to enable better care and on the continued time, space, and trust they need to do so.

Digital art

Sara-Lovise Ask Ewertson (@sara.lovise)

Idea and development

• Jelmer Brüggemann (Department of Thematic Studies and Centre for Medical Humanities and Bioethics, Linköping University)
• Lisa Guntram (Department of Thematic Studies and Centre for Medical Humanities and Bioethics, Linköping University)
• Ann-Charlotte Nedlund (Department of Health, Medicine and Caring Sciences and Swedish National Centre for Priorities in Health, Linköping University)

Funding

This art project has been made possible through support by a Linköping University initiative to valorize knowledge assets (VFN) and the research project “What are you complaining about?” (supported by the Swedish Research Council no. 2020-01594).

Research ground

For further reference, please see: Brüggemann, J., Guntram, L. and Nedlund, A.-C. (2023) The ‘difficult patient’ – Dominant logics and misfits in medicine. In Liamputtong, P. (ed) Handbook of Social Sciences and Global Public Health. Cham: Springer. pp. 1-14.

Patients’ complaints are increasingly valued in Swedish healthcare as key information for the improvement and democratisation of care. This is exemplified in a range of organisational changes that have followed the introduction of a new system to capture and deal with formal patient complaints that is currently being implemented. Here, more direct communication between patients and care providers is central, and care encounters are identified as key instances to signal a culture in which complaints are welcomed. In this way, it is a goal that patients’ trust in the system and their overall willingness to complain will increase. Yet, how “informal” critique, expressed verbally by patients, impacts care encounters, and how it can improve care quality and equity, is a blind spot in current work on the Swedish complaint system, and in international research.

This blind spot is even more alarming, given earlier tensions that patients and health professionals have reported in relation to active patient involvement in care encounters. Against this background, the current project aims to study what patients’ verbal critique means in Swedish care encounters, and how it can improve care quality and equity.

The project analyses patients’ and care professionals’ experiences of and expectations on how critique is to be expressed; what they complain about; and how patients’ social position matters. We also study how patients’ critique is used in quality improvement at the clinic level and in relation to formal complaint systems.

The project applies a qualitative and interactive design. Material is collected through qualitative interviews with patients and professionals, and observations of innovative drama workshops in two clinical settings. In parallel, we collect policy documents that deal with complaint management at different organisational levels.

The project is a collaboration between researchers from the Department of Thematic Studies and the Department of Health, Medicine and Caring Sciences, both at Linköping University.

Project facts

Financier: The project is funded by The Swedish Research Council.

Reserachers: Jelmer Brüggemann (PI), Lisa Guntram and Ann-Charlotte Nedlund

The aim of this project was to examine how sociocultural beliefs about in/fertility, pregnant embodiment, bodily sharing and close relationships are enacted and negotiated as individuals engage with medical innovation in the field of ART. Through qualitative analysis of accounts and experiences of uterus transplantation combined with IVF (henceforth called UTx-IVF), the project examined how sociocultural beliefs and imaginaries are enacted, reinforced and challenged in the emergence of UTx-IVF. Overall, the project showed how the complexities expressed in different accounts may inform the development of care practices and policies in uterus transplantation specifically, and in the development of ART more generally.

In the medical and ethics literature on UTx-IVF, there has often been a strong focus on the extent to which this innovation offers additional benefits to those associated with the alternatives of adoption and gestational surrogacy. In such literature, a common assumption has been that UTx-IVF is less fraught with ethical difficulties and thus should be considered a less morally problematic option. The project showed how this assumption can be unpacked and pointed to how such assumptions may affect individuals’ approach UTx-IVF and the policy making around the procedure (Guntram 2020; Guntram and Williams 2018). Through an analysis of a 2016 Swedish white paper (SOU 2016:11) which considered amending existing policy regarding altruistic surrogacy arrangements we pointed to inconsistencies policy discussions with respect to altruistic surrogacy and UTx-IVF using living donors. By applying arguments for a restrictive position on altruistic surrogacy to the case of UTx-IVF using living altruistic donors we found that such arguments, if they hold in the case of surrogacy, apply similarly to UTx-IVF.

Relational dimensions and social imaginaries

Furthermore, the project demonstrated relational and gendered dimensions of UTx-IVF, which enriches discussions of risks, benefits, care and support in UTx-IVF. Through qualitative analysis of in-depth interviews with women who have considered and sometimes gone through, UTx-IVF the project demonstrated how negotiations, expectations and entanglements unfold and are managed in the search for a uterus donor (Guntram 2020). It also detailed relational contingencies at stake as UT-IVF unfolds and the potential stress and disparities in access that the requirement of bringing your own donor might entail. These results contribute to expand the ethical discussion of complications associated with the transplantation process. Relatedly, the project demonstrated how in-depth analysis of the histories of those involved, and of shared social imaginaries of reproductive liberty, medical prospects, and female embodiment, make possible for a more nuanced understanding women’s motivations for pursuing UTx-IVF (Guntram 2022). Doing so, it detailed social imaginaries – i.e. collectively formed meanings and affects that shape how we experience our bodies and the social world – materially shape bodies, life trajectories, and desires, and, consequently, women’s approaches to UTx-IVF.

Project facts

Project title: A gift for life? – a sociocultural exploration of live uterus transplantation between relatives and friends from the perspective of involved parties

Funder: Swedish Research Council

Project leader: Lisa Guntram

Publications

• Guntram L (2021) May I have your uterus? The contribution of considering complexities preceding live uterus transplantation. Medical Humanities 47(4): 425–437. DOI: 10.1136/medhum-2020-011864.
• Guntram, L (2022) Reproduction and beyond. Imaginaries of uterus transplantation in the light of embodied histories of living life without a uterus. In Shaw, R. M. (Ed.) Reproductive Citizenship: Technologies, Rights and Relationships. Basingstoke, UK: Palgrave Macmillan.
• Guntram L and Williams NJ (2018a) Livmodertransplantation med levande donator – etiskt dilemma? Läkartidningen 115(FEXT).
• Guntram L and Williams NJ (2018b) Positioning uterus transplantation as a ‘more ethical’ alternative to surrogacy: Exploring symmetries between uterus transplantation and surrogacy through analysis of a Swedish government white paper. Bioethics 32(8): 509–518. DOI: 10.1111/bioe.12469.

The world’s first attempt to transplant a uterus from a living donor to a related recipient was carried out in the autumn of 2012, in Sweden, when a daughter received a uterus from her mother. The project “Shaping ethics, Shrouding Ethics: Uterus transplantation in Swedish media” examined this development through an analysis of Swedish media coverage of the uterus transplantation attempts. Specifically, it addressed how media contribute to make certain issues appear more ethically central compared to others, through its ways of presenting and discussing uterus transplantation.

Much bioethical analysis takes place when a medical practice is already in place. However, once a certain practice has been accepted, in the sense of having become integrated into health care practice, it becomes much more difficult to close it down. In this project we demonstrated that to engage, critically and analytically, with the entrenchment through which certain questions and understandings become positioned as central ethical questions or understandings is crucial in the striving for ethical analysis of the development and introduction of new technologies.

Through an analysis of media coverage in newspapers and in the medical magazines “Läkartidningen” and “Dagens Medicin” during the period of 1998-2016 we examined what ethical aspects of uterus transplantation were raised, presented and discussed in this material, and how this was done. The project also examined ethical questions that are not raised and discusses the implications of not addressing these questions. Doing so, we showed how specific assumptions, norms and values are expressed and used to underpin specific positions within the debate, and how certain subjects, desires and risks become shrouded or simply omitted from it. Our approach—which we labelled the Ethics of the Societal Entrenchment-approach—allowed us to discuss how the identification of something as the problem helps to shape what gets to be described as a solution, and how specific solutions provide frameworks within which problems can be stated and emphasised.

In our analysis we identified one dominant and two smaller, and more fragile, discourse coalitions – an ensemble of actors who draw on or embrace a certain discourse or certain sets of discourses. The first coalition consisted of the transplantation teams and their patients, who gave accounts to journalists. Within this discourse coalition, live UTx-IVF was described as the solution to the problem of UFI. The second discourse coalition was predominantly made up by medical professionals outside the transplantation team and medical ethicists, who wrote articles themselves, and women with UFI, who gave accounts to journalists. This coalition accepted the definition of the problem given by the first discourse coalition only partially: that women with UFI who wished to become genetic and gestational mothers had not previously been helped by the health care system, and this was problematic. Also, the third discourse coalition was populated by medical ethicists, and by some columnists and journalists. This coalition re-defined the problem in terms of the limits of medical innovation and ethical concerns, such as the issue of priority-setting.

Within the first step of our approach, we showed how certain discourse coalitions – ensembles of actors who draw on or embrace a certain discourse or certain sets of discourses – were formed, and how these coalitions positioned certain concerns as central ethical concerns. In the second step, we discussed aspects that we identified as ethically troubling in the media discussions of UTx-IVF in Sweden. In doing so, we showed how different problems and solutions come to gain acceptance or be questioned, and what were considered to be ethically relevant aspects to address within a particular debate. We also critically discussed whether some questions or some ways of addressing certain questions should be positioned as ethically troubling and if so, why.

Project facts

Time period: 2015-2016

Funder: Linköping University and Riksbankens Jubileumsfond via Zeiler's Pro Futura Scientia fellowship.

Researchers: Kristin Zeiler (PI) and Lisa Guntram

Publication

Guntram L and Zeiler K (2019) The Ethics of the Societal Entrenchment-approach and the case of live uterus transplantation-IVF. Medicine, Health Care and Philosophy 22(4): 557–571. DOI: 10.1007/s11019-019-09891-w.