This is a short story I wrote in a workshop our team did to reflect on how our personal stories shape the work we do in research.
The workshop was hosted by the Storycenter, specifically Rani Sanderson, together with Daniel Weinshenker.
Thank you for the great workshop! It made me quite emotional, which sometimes is a bit embarrasing as an end of life researcher. (Even though I know it's nothing to feel ashamed about.)
I still remember the feeling of being stuck under the ice. Well, I wasn't, but it felt like the current was pulling me down while I was desperately trying to reach the surface, where the sun was shining through the hole in the ice.
But this wasn't what I wanted to tell my professor. What I did want to tell her was how I finally understood the fear of suffocating in palliative care.
It is weird to die when working on research on death and dying. Who would have guessed that even in dying, I still think of work? It felt weirdly comical. "I am now overqualified," I thought.
So, I was standing in my professor's office. She knew what had happened; I had written her an email because I missed a deadline. She turned around.
"Please don't tell me about it," she said. "I am not good with personal stories."
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Ethisch vertretbar im Sinne des Gesetzes Zum Verhältnis von Ethik und Recht am Beispiel der Praxis von Forschungs-Ethikkommissionen - Fateh-Moghadam & Atzeni 2009
This article examines to what extents ethical judgements are genuinely implememented in a legal context. Fateh-Moghadam and Atzeni analyze two ethics committees using Luhmanns systems theory.
Morale, Ethics and the law are intertwined. While ethics generally describes the academic reflection of morale, ethics-committees don't aim to provide be a neutal reflection in distinction to a specific morale. Their meaning of "ethics" derives from the distinction from the law itself. Ethics committees therefore imply, that next to legal judgements, ethical resoning - as specifically non legal - are instructive for legal contexts aswell.
However, ethics committees are bound to a specific scope within which tejy are allowed to make their judgements. It is legally definied which criteria they can judge on - if they were to make their judgements outsaid of said scope, their argument might be genuinly based on ethical reasoning, but it'd be rejected or at least contestable to be used as a legally instructive argument. The "ethical" judgements of a ethics comittee therefore are still legal arguements in the end.
Allein die strikte Bindung an den gesetzlichen Kanon von Versagungsgründen zeigt, dass die Entscheidung der Ethikkommission sich nach einem rechtlichen Maßstab zu richten hat. Das ablehnende Votum einer Ethikkommission ist genau dann rechtswidrig, wenn es die durch das Recht gezogenen Grenzen überschreitet und an die Stelle von rechtlichen Kriterien, eigene, genuin ethische Kriterien setzt.“ (Fateh-Moghadam und Atzeni, 2009, p. 128)
Ethics committees usually consists of people of different professions as well as laypersons, which each argue through the logic of whatever system they are part of. Modern society, which according to Nassehi can be describes as a "Gesellschaft der Gegenwarten" has no central ponit of reference, which could be used to evaluate and decide, what way of looking at a situation is right. Instead, there different perspectives all co-exist as valid points of reference at the same time. Through explaining their viewpoint to acteurs of other systems (or contexts of logics), they are translating their professional knowledge into ethical arguments, which then can be understood by other actors aswell.
The "ethical" aspecto of ethics committees or other bioethical procedures therefore isn't to be found in their Sachdimension, but in their Zeit- und Sozialdimension. The opportunity to have a process in which different perspectives meet and can discuss about their specific judgements on a situation is what constitutes the "ethical" character of an ethics committee, as "the process allows for a pluralistic consensus-building" (p. 129).
„Über die kommunikative Bezugnahme auf Ethik gelingt es, differente fachliche Perspektiven so aufeinander zu beziehen, dass die Herstellung konsensualer Entscheidungen möglich wird. Das Ethik-Label nimmt bei der Herstellung einer so verstandenen praktischen Konkordanz, die nicht mit tatsächlich konvergierenden Perspektiven zu verwechseln ist, eine Art Übersetzerfunktion ein, die Anschlussfähigkeiten auch dort erzeugt, wo zunächst inkommensurable Logiken aufeinander treffen.“ (Fateh-Moghadam und Atzeni, 2009, p. 143)
What is interesting to me is the question whether this construction of ethics can also be found in political discourses or parliamentary debates on assisted dying laws.
Looking at the way bioethical questions are oftentimes handled through committees, who, through their procedural consensus-making, can influence legally binding decisions and which act preemptively rather than reactively, i wonder why this isn't applied to assisted dying aswell? Maybe it is because there are just way more cases or because it ususally is a decision that only refers to one single persons life, but doesn't endanger society as a whole?
Thinking about the difference in perspecives and about the ethical judgments in the end still being legal ones, it is astounding, that assisted dying is seen mostly as something that is to be judged by a medical professional, as "free will" to me seems to be less of a medical and more of a legal category. The exception here of course being cases of psychiatric illnesses, where the lack of free will displays a medical issue. However, doctors in that case can diagnose the lack of free will through a illness, whereas in assisted dying they have to diagnose the lack of something clouding the patients ability to choose freely. Looking at how diagnosing a patient as healthy is alomost impossible, if one has to account for every possible category of disease, i wonder how this should be possible for such an abstract category as "free will".
Is assited dying therefoe even something that should be a matter of medical regulation? Why are doctors entrusted with this?
How choice became the goal in itself: Analysing the emphasis on choice and control at the end of life through the work of Charles Taylor - van Wijngaarden 2026
In this article, van Winjgaarden analyzes the idea of freedom of choice in assisted dying and the implications this holds for the individual. While modernity expects mastery of one's own end-of-life trajectories, the invididual often times might feel not autonomous, but overwhelmed being taskes with assigning meaning to their own death. Van Wijngaarden uses Taylors concepts of freedom and authenticity to argue for a more situated understanding of freedom and choice.
Van Wijingarden first constructs the emergence of individual choice from the premodern times to today. While the individual in premodern times was bound to a collective, which also supplied the individual with a collectively shared valued, and believed to be part of transcendental order, the metaphysical worldorder over time shifted towards a focus on inwardness, where the individual was seen as one with it's own inner workings, which in turn lead to the need for reasoning. During the Enlightenment, the inner self was first seen as something to be disciplined and optimized to be in line with nature, until later during the Renaissance individualness was embraced and authentically as "being oneself". The goal now was to realize oneself, to express oneself freely. individualism over time became one of the grounding stones of modern societies. The own biography, the own social network are therefore seen as ones personal choice and as self-determined, while societal morals (and thus laws) aim to maximize the individuals ability to posperously live their life within their own right.
„Taken together, modern people have come to understand themselves as equal, self-responsible agents with a unique inner self, living in a world devoid of transcendental givens (Rosa 2019, p. 18; Taylor 2004, pp. 19–22; 2007, pp. 164–165). Moral sources are located within the human being. Communities are seen as dynamic and instrumental connections: they serve specific (personal) goals, often for a demarcated period. In principle, everyone is considered to be free to determine their own conception of a good life, or a good death, without any unwanted interference from others. Hence, freedom of choice itself has become a supreme value (Taylor 1992, pp. 22, 69).“ (Wijngaarden, 2026, p. 5)
As life itselfs emerges as something to be mastered idividually, death not only becomes meaningless, but something that needs to be mastered aswell. The imeraptive of rationale and science implies that there are objective truths that can guide the individual in their decisions, but biomedical knowledge is either to complex, uncertain or just not applicable in the end of life. Moreover, not every individual has access to the same options. Free choice therefore becomes an illusion, which urges the indicidual to control a trajectory that is, in the end, uncontrollable.
„The often incorrect underlying assumption is that medical technology and treatment can deliver reliable prognoses and outcomes. Moreover, not all options are equally accessible. This can create the illusion of choice that obscures structural constraints and puts some people in an even more precarious and unstable situation“ (Wijngaarden, 2026, p. 6)
Personal and existential expierences at the same time are disregarded as there is no collective meaning making. Disembedded from collective values, individuals gain a freedom of choice that then becomes meaningless, as it is rendered arbitrary. Nontheless, the end of life has to be arranged in a way that is "authenic", placing even more strain on the individual.
„When choices lack inherent value, the meaning assigned to them becomes somewhat arbitrary. Moreover, it becomes more or less challenging to comprehend and justify why some things are more important than others: meaning appears to be interchangeable, making difference ultimately insignificant (Taylor 1992, p. 38), and potentially fostering a form of moral relativism (Taylor 1992, p. 14).“ (Wijngaarden, 2026, p. 6)
Because one's end of life trajectory is attributed to the invididuals choices, it also barely is something that can be vales against other judgements; instead they are silently accepted as "their choice". This further disengages the individual from societal embedding or even a possible conversation on what the experience is like for the individual, as the loss of any friction prevents any form of "resonance" (using Rosa's concept).
In the second half of the article van Wijngaarden proposes an alternative way to think about autonomy and choice grounded on Tayors idea of 'situated freedom'. Individuals, their authenticity, their autonomy and their choices therefore cannot be be seen as something that emerges and evolves in total self isolation, but rather 'in diaglogue'. Van Wingaarden therefore propses a more dialogical approach in assisted dying (similiar to what Yesil (2025) describes with the embodied self), where "care" takes on a leading position, whereas definite answers and choice take the back seat.
„The dying process and the task of assigning meaning to these difficult life events implies that meaning does not emerge from the individual’s preferences in isolation –what do you want, what are your wishes?– but from shared horizons of significance. Meaningful end-of-life conversations should therefore acknowledge that patients often discover what they value through the very act of speaking with trusted others, including health professionals. The aim is not to arrive at a definitive and fully informed answer, but to accompany the patient in articulating a stance towards dying that resonates with their lived biography.“ (Wijngaarden, 2026, p. 9)
Whose Choice? A Qualitative Inquiry into Professionals’ Moral Positions on Euthanasia in Belgium - Yesil 2025
This paper draws on interviews with mutliple professional actors surrounding the topic of assisted dyinh in belgium (Physicians, pastors etc). Yesil not only differenciates the different stances assisted dying, but analyzes the concept on self that is hidden in the specific line of argumentation. This furthermore leads to a discussion on how free will is seen and attributed in the discussion on assisted dying.
Yesil first explains how death came to be a topic of choice at all. Pluralization and modernization lead to a loss of collective meaning, which in turn lead death to become a individual problem which defies all resoning. Assisted dying offers a "solution" to this problem, as it seemingly allows individuals to control and reason about death once again through the notion of choice.
„Consequently, being able to choose death removes it from being the “ultimate humiliation of reason” (Bauman, 1992, p. 15); choice becomes a specific solution to the problem of individuals’ transience in the world.“ (Yesil, 2025, p. 1456)
The idea of free choice, however, is problematic, especially in a medical setting, as it obscures power imbalances and interdependencies. The way a patient's wish to die is interpreted as free choice is contingent, as well as the contexts in which said wish might first arise. The way this is reflected in the evaluation of patient choice is the topic of debate in most law-making efforts around assisted dying, as it completely changes the influence and power a professional might "legitimatly" hold over the patient's decision to die.
Following a weberian method of Idealtypes Yesil describes "three notions of the self: the autonomous self, the narrative self, and the embodied self." (p. 1459)
In an interation based on the concept of the autonomous self, the physiscian no longer holds the status as a expert, as the individual's judgement is equally valid as a physician's. It is the individual alone who is eligible in deciding that it's life is no longer worthwile. This wish shall be granted, as long as it does not harm others. Yesil therefore draws this construction of the self / this process of deciding back to Isiah Berlin's concept of negative liberty.
A physician might not be convinced of a patient's free will or the validity of their choice, but is not able to do anything more than refuse to aid in the individual's death; the patient in return is free to seek another physician, as the judgement "is nothing more than an instance where 'two subjectivities meet'" (p. 1460). This notion of freedom of choice therefore points to the absence of "an innate value of human life" (p. 1460), which refers back to the loss of collective meaning in modern society. This is the self most often being reflected in cases where assited dying has become legalized.
In contrast, the narrative self is a subject that is not independet from its surroundings. Societal semantics and value build the ground on which the individual's interpretations become meaningfun and therefore also influence the individual's choice. Here, the wish to die is valued against extrinsic factors, which need to be avoided. Economic factors, the feeling of being a burden and a quality of life that is deemed unfavourable by societies standards can all influence the decision to die. Ideally, the individual would be free of said influences, as the motivation to die is supposed to be a personal one not to be influenced what others think. This line of argumentation can most often be seen in actors, who don't generally oppose assisted dying, but are worried about the message it might send to people livin with illnesses and disabilities, as it might enforce the idea of their life valuing less.
In the case of the embodied self similarly the decision isn't totally free in it's choice. While the narrative self might feel dying is the right choice due to the narratives surrounding it, the embodied self seeks to escape the burden of their own corporeal experiences and emotions. Here, care takes on an essential role in the evaluation of a person's wish to die, as it becomes the treatment itself. Empathy here is seen as both an epistemic skill to understand another persons reasons for their wishes, as well as the tool to legitimatly refuse said wish to protect the individual from becoming the victim of it's own unreflected anxieties. In this line of argumentation, the relief of assisted dying isn't death itself, but the sense of security and understanding a person might receive through the knowlegde that assisted dying would be an option if the pain were to become too much to handle. It therefore plays a second-hand role in care for a person wishing to die , as the first step should be to lessen the person's worries by empathizing and caring.
What this study shows, is that the discussions on assisted dying in modern times don't concern themselves with the question whether it is a morally right option to begin with. Instead the focus lies on the question under which circumstances a person can be trusted to make the right choice and how this can be controlled.
„In late modern times, turning back from what has been seized under human control and from disenchantment with transcendental religious meanings provided at death seems unlikely. As a result, the crux of the matter emerges as to establish clear enough legislation and competent institutions that enforce relatively objective criteria to assess each situation rather than ideologically pushing a certain manner of dying as a “good death” to the general public.“ (Yesil, 2025, p. 1468)
Policymakers therefore have to find a way to safeguard "free will" in a "objective" and instituationalized way (through the law), while the matter itself is highly contextual and subjective.
What might be interesting to see is on what concept of the self different legislation base their reasoning. It however can be expected that most legislations, in which assisted dying is legal, the law grounds itself on the autonomous self, which might explain the rapid expantion of elegibilty criteria (as can be seen in canada).
Interestingly, the prohibition of euthanasia versus assisted dying seems to draw from the concept of the embodied self aswell. The patient has to fulfill the act of administering the deadly medication itself, thereby showing that dying is not accociated bith any emodied experiences that might hinder them from commiting suicide.
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“At this stage, the question is no longer: how can the individual satisfy his own needs without hurting others, but rather: how can he satisfy his needs without hurting himself, without reproducing through his aspirations and satisfactions his dependence on an exploitative apparatus which, in satisfying his needs, perpetuates his servitude?”
The Social Construction of Illness Key Insights and Policy Implications - Conrad & Barker 2010
This paper serves as a great overview for the history of constructivism in medical scoiology. It discusses multiple approaches on how illness is constructed in a social sense and how this relates back to cultural meanings. Illness, in line with Freidson's "The Social Construction of Illness" is hereby seperated from the Disease, as the former denotes the lived social experience and attribution of signs as pathological symtoms of an illness, whereas the latter describes the biological issues that (most of the time) go hand in hand.
The social sphere of what - at least usually - is seen to be a cold, hard medical fact can be witnessed in multiple occasions: The stigma or value some illnesses hold (one thinks of HIV/AIDS, which to this day is heavily stigmatized, cancer, which oftentimes patiens experience as punishment for their personal wrongdoings in the past, or tuberculosis, which was seen as a "decoration" for the suffering great artist or the fagile young woman), contested illnesses, which describes illnesses that cannot be attributed to specific biological markers and therefore often are left unseen and untreated (long covid, me/cfs, fibromalgia), or the way disability is not just a "abnormality" of the body but then becomes a "disability" only in the social life of people living with said limitations.
Because illnesses are socially constructed, the discourseand, subsequently, the knowledge surrounding them is subjected to changes. Medicine & Health in this sense are not static, but heavily contested fields in which multiple actors are shaping our understanding of what is normal or pathological, what is a legitimate suffering and what is not. Historically, doctors held a gatekeeper function due to their professional autonomy, but the picture is currently shifting towards an more "emancipated" patient, who reclaimes their "illness narratives". Social networks, self-help-groups etc. not only spread personal testimonies, but help with constructing problems (and illnesses!), mobilizing power and constructing identities around otherwise seemingly meaningless biographical disruptions through (chronic) illnesses or disabilities.
While this dynamic holds the posibility to democratize the construction of knowledge surrounding illnesses (whereat one might want to think about whether this is even desirable), it also allows established actors to shape this discourse to their advantage. Conrad & Barker list multiple instances in which pharma industries have changed the social perceiption of an illness through of for expansion of the marketability of their products. The discourse around illnesses therefore often is one of injustice. Illnesses further can "institutionalize" differences or inequalities, as feminist studies regularly show in their analyses of "female" illnesses.
How and under what circumstances illnesses are constructed and who plays a role in that therefore should be kept in mind when thinking about health policies. As a sociologist, one must take a step back and wonder about the circumstances of a medical intervention, the underlying suffering and why this seems to be valued as such.
"It seems that we have a social predilection toward treating human problems as individual or clinical—whether it be obesity, substance abuse, learning difficulties, aging, or alcoholism—rather than addressing the underlying causes for complex social problems and human suffering." (Conrad und Barker, 2010, p. 9)
Now circling this back to the topic of assisted dying, the question arises on what exactly is apparently being medicalized or debated?
In a way, life itself becomes the illness, as it is not seen as bearable anymore. When looking at different legislations, the countries either resolve to setting specific criteria for the suffering one must experience to be eligible for assisted dying. In other countries however, because suffering is such an subjective experience, the law focuses on the "free will" of whoever considers assisted dying. Here, its not the quality of life, but the capacity of choice that becomes regulated itself (On a side note: dignosing free will is a negitive practice in a way - it's almost as impossible as diagnosing someone as healthy; You never know if there might be some sort of disease, or illness lurking).
The cultural construction of illness (or suffering in that case) also explains why there are such contradicting veiwpoints on this topic. While for some people the legalization of assisted dying might mean a newly won degree of freedom, it might mean the legal institiutionalization and validation of the "unworthyness" of their life. This concern mostly arises within the disabled community, which, at the same time also happens to be one of the strongest supporters of assisted dying.
„ Distancing themselves from positivist interpretations, scholars in this tradition asserted that what comes to be identified as deviant behavior or a social problem is not “given,” but rather is conferred within a particular social context and in response to successful “claims-making” and “moral entrepreneurialism” by social groups (Becker 1963; Gusfield 1967, 1975; Spector and Kitsuse 1977).“ (Conrad und Barker, 2010, p. S68)
One interesting question therefore might be how suffering is being represented both in works of culture but also in the law.
Conrad, P., & Barker, K. K. (2010). The Social Construction of Illness: Key Insights and Policy Implications. Journal of Health and Social Behavior, 51(1_suppl), S67–S79. https://doi.org/10.1177/0022146510383495