Law in the everyday of physicians making end of life decisions for people with dementia in Sweden
Conventional wisdom says that the coercive power of law contains the tools to respond to the challenge of end-of-life decision-making with cognitive illness. Rather than departing from this assumption, this paper seeks to explore the relationship between law and society in the context of end-of-life decision making for people with dementia. In doing so, a holistic account of law and how it matters will be explored. A plural legal consciousness framework will be applied to locate law in the everyday life of doctors making end of life decisions for this patient group. This is implemented through a thematic analysis of interviews with doctors in Sweden. As a first step, the paper will develop an understanding of end-of-life decision making law through the stories of the everyday practice of these doctors. In doing so, it will be attentive quasi-legal norms and regulatory regimes that are indigenous to medicine in addition to formal state law regimes. As a second step, the paper will map how these diverse systems of law matter in end-of-life decision making for people with dementia. It indicates that whilst formal law is always an undercurrent, and sometimes an iron fist, it is also only one tool as physicians are guided by the lodestar of the indigenous Medical Code. Through sensitivity to diverse systems of regulation and control, this paper will offer a fresh perspective in the investigation of the power of law in end-of-life decision making that will contribute to a more complete picture of law in this space. It will also begin to unpack some of the problems of a liberal autonomous subject that predominates Swedish health law for the bodily realities of dying with dementia.
Manni Ardzejewska is a fourth year PhD candidate in Health Law at Lund University in Sweden. Her thesis concerns end-of-life decision-making with a focus on people with dementia. In this research, she takes an interdisciplinary approach to examine the interplay between law and the everyday practice in healthcare. This interest in critical, interdisciplinary research with issues of social justice at its core is a consequence of her rich educational and personal journey. Manni has an undergraduate degree in International Global Studies with a double major in Gender Studies and Political Economics from the University of Sydney and a Juris Doctor from Queens University Belfast. Motivated by a concern for circumstances at the end-of-life which are defined by relationality and dependency in a field often marked by conversations of autonomy, she took up her research position in Lund in the Health Law Research Environment.
Death with dignity, or the death of dignity?
In recent years, the Court of Protection, led by Hayden J, has gradually engaged more with the language of dignity alongside human rights in making end-of-life (non-)treatment decisions for patients who lack capacity. But dignity remains a nascent concept under English law and one which is all too often misunderstood and misapplied. Dignity, predominantly, is used in an approbatory sense to comment on the diffuse moral acceptability of a course of action rather than its compatibility with the intrinsic value of the patient as a human being. Treatments, circumstances, and the patient’s life are described as ‘dignified’ or ‘undignified’, skewing the meaning of the term away from an inherent human characteristic upon which individual rights are based. This risks watering down the significance of the patient’s rights and interests in favour of an assessment which pays great attention to the patient’s situation but not to the patient themselves, who is reduced to a mere object of healthcare and a means to the end of healthcare provision as a passive recipient rather than active participant.Part of the problem is there is no accepted meaning of dignity which can offer any insight and it most frequently appears in terms of ‘death with dignity’, which leads all too easily to a supposition that death and dignity are naturally disconnected and require efforts to reconcile them. Beyond the unhelpful ‘I know it when I see it, but I can’t tell you what it is’, the judiciary has been left to figure dignity out for themselves. The recent developments in the Court of Protection should be welcomed, though, because attentiveness to dignity necessarily entails attentiveness to individual rights. If we are to understand human rights and their application at the end of life, we must first understand dignity as the root of those rights.
Jordan Buck is a PhD candidate at Durham Law School, funded by the Arts and Humanities Research Council (AHRC) through the Northern Bridge Consortium. His PhD research provides a comparative analysis of the patient-centric approach to end-of-life decision-making for patients lacking capacity, viewed through the lens of human dignity. It explores the extensive German dignity jurisprudence and compares it to the more nascent dignity jurisprudence in England and Wales, interrogating the role and impact of the protection of human dignity within the end-of-life context.
Developing the First Step in Death Education for Medical Professionals in South Korea (EDU-AM (Ars Moriendi) Project)
In Korean medical curricula, educational content related to death or end-of-life care has been long neglected and underdeveloped. The EDU-AM programme is designed as an introductory course of medical death education that provides an overarching framework, integrating socio-humanistic death studies and palliative care principles. This foundational first step in teaching death and dying sets the stage for subsequent, more detailed exploration of not only medical knowledge and techniques pertinent to end-of-life care but also a deeper philosophical and existential understanding of death. Ultimately, this project will endeavour to contribute to engendering a revolutionary shift in Korean society's extremely medicalised dying culture and problematic improper end-of-life care. On the culmination of the development of medical technology, we, medical professionals, need to answer the call for a new 'Ars Moriendi'. We need to explore, navigate, and examine the delicate balance between applying life-sustaining interventions and respecting life's natural closure. Thus, end-of-life care is an art, and this EDU-AM programme pursues to raise 'art performers', not mere 'medical technicians.' To achieve this aim, this programme first encourages physicians to genuinely face their own mortality and contemplate better end-of-life experiences both for themselves and their patients. Through fostering existential intelligence, this program guides physicians to bring and implement these insights into their medical practices. This EDU-AM program is composed of five lectures and supported by innovative pedagogical strategies. To examine the feasibility and effects of this program, the EDU-AM pilot study has been designed. The ultimate goal of the EDU-AM project is to contribute to the death reformation in South Korea, rather than being merely integrated as an additional part of the current medical curricula. Eventually, this program calls for revolutionary changes in the Korean end-of-life care system and hopes that this ripple will extend beyond its borders, particularly near Asian countries.
Dr. Myongjin Agnes Cho is a palliative care physician from South Korea. She is currently a PhD student in the Theology Department (Centre for Death and Life Studies). Agnes’ PhD project, the EDU-AM (Ars Moriendi) Project, aims to develop a new death education programme for medicalprofessionals, specifically tailored to the South Korean medical system and socio-cultural contexts. This innovative programme is designed as the first step in teaching death and dying for medical professionals, setting the groundwork for more extensive exploration. The programme focuses not only on medical knowledge and end-of-life care techniques but also on fostering a deeper philosophical and existential understanding of death through integrating medicine and humanities, as a new pedagogical trial in the field of medical death education.
Treating Severe and Enduring Anorexia Nervosa: The Role of Palliative Care and End of Life Decisions
Whilst not a terminal illness, Anorexia Nervosa is a complex condition with the highest mortality and lowest sustained recovery rate of any psychiatric disorder. This has made treating the condition immensely difficult for clinicians, and around 20% of patients diagnosed with Anorexia will go on to develop Severe and Enduring Anorexia Nervosa (SEAN). Whilst SEAN has appeared in medical literature since the early 1980s, there is still a lack of consensus regarding how to approach the condition's care. The evolution of nasogastric (NGT) feeding as a dominant treatment mechanism for Anorexia generally has meant that many patients with SEAN will also be treated through such means. NGT feeding can be both lifesaving and life sustaining. However, the treatment is also highly invasive and may be unsettling when authorised in the absence of their patient consent. The legal authorisation for this form of care is presently marked by a legislative conflict of governance, effectively placing patients within an autonomy lottery. How this detrimentally impacts the embodied realities of SEAN sufferers will be the focus of this submission, including how reliance on NGT feeding has shifted the balance away from palliative care options. It will be argued that end of life care ought to play a greater role in SEAN treatment plans. Reference will be made to the extension of Canada’s medical assistance in dying programme to support SEAN patients who wish to end their lives, in addition to the legal options currently available to SEAN sufferers in England and Wales. This submission will therefore highlight how the law may better facilitate expressions of self-determination for SEAN patients where NGT feeding no longer yields positive results, and where palliative options should instead be considered.
Rachel Jenkins is a third-year PhD candidate at Durham University, with a speciality in Medical Law and Ethics. Rachel graduated with an LLM and LLB from The University of Bristol and is now continuing her research into the law pertaining to eating disorders with funding from the Economic and Social Research Council at Durham University. Her principal areas of research include mental health law, capacity and consent. She has worked as a Research Assistant on multiple publications and contributed to The Practical Handbook of Eating Difficulties. Rachel Jenkins is also a part-time tutor for the Law School, teaching Medical Law on the LLB programme, with previous experience teaching Criminal Law.
Hidden Oppression, Silent Victims and Dying: The intersection of mismanaged hazardous substances and social determinants of health
This study uncovers the hidden social determinants of health, mortality and injustice faced by children with life-limiting illnesses in South Korea. Using a critical ethnography of over 120 interviews, observations and document analysis, this work highlights how the mismanagement of hazardous substances in domestic, occupational and educational settings is compounded by a decision-making ecosystem fraught with social injustice and structural oppression. The research reveals that social determinants of health are routinely overlooked, skewing care decisions. Case studies of exposure to toxins such as humidifier disinfectants, radon, industrial chemicals and asbestos highlight the social influences on health outcomes. These factors often go unrecognised in care decisions, pointing to systemic gaps in addressing critical health determinants.Drawing on Levinas's philosophy of the 'other' and Bourdieu's concept of symbolic violence, the findings interpret the complexity of oppression in the aftermath of biocide disasters. The study reveals a pattern of injustice linked to corporate secrecy, deregulation and cultural bias, and calls for an enhanced right to information as a means of social justice and disaster mitigation.The study argues for improved safety and health management and a government duty to protect rather than compensate, emphasising the need for supportive care tailored to individual rights and well-being.
The study calls for a paradigm shift to recognise the profound influence of hidden social determinants. It advocates structural changes to promote informed, compassionate choices in paediatric palliative care and a reappraisal of practices that move beyond mere compensation to genuine support and care for vulnerable populations.
Seounghoon Oh is a PhD candidate at Durham University specialising in the intersection of global bioethics, virtue ethics and the socio-political determinants of health. His multidisciplinary research critically examines the ethics of decision-making, organ donation, and the societal impact of environmental disasters on vulnerable populations. Under the supervision of Professors Roger Smith and Robert Song, Seounghoon's dissertation explores the complex decision-making processes of children and young people with life-limiting conditions. His commitment to exposing the hidden oppression of silent victims, particularly in the context of hazardous materials management, drives his academic work.
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