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How shared is shared decision-making? A care-ethical view on the role of partner and family
  1. Inge van Nistelrooij1,
  2. Merel Visse1,
  3. Ankana Spekkink2,
  4. Jasmijn de Lange3
  1. 1 Department of Care Ethics, University of Humanistic Studies, Utrecht, The Netherlands
  2. 2 The National Organization of Volunteers in Palliative Terminal Care in The Netherlands (VPTZ), Amersfoort, The Netherlands
  3. 3 Dutch Nurses Association (V&VN), Utrecht, The Netherlands
  1. Correspondence to Dr Inge van Nistelrooij, Chair Care Ethics, University of Humanistic Studies, Kromme Nieuwegracht 29, Utrecht 3512 HD, The Netherlands; i.vannistelrooij{at}uvh.nl

Abstract

The aim of shared decision-making (SDM) is to provide information to patients in order to enable them to decide autonomously and freely about treatment together with the doctor, without interference, force or coercion by others. Relatives may be considered as hindering or impeding a patient's own decision. Qualitative-empirical research into lived experience of SDM of patients with cancer, however, problematises the patient's autonomy when facing terminal illness and the need to make decisions regarding treatment. Confronted with this difficulty, this contribution tries to think through patients' dependency of others, and make their autonomy more relational, drawing on care-ethical critics of a one-sided view of autonomy and on Ricoeur's view of the fundamentally intersubjective, relational self. We aim to conceptualise relatives not as a third party next to the doctor and the patient, but as co-constituents of the patient's identity and as such present in the decision-making process from the outset. What is more, partners and the family may be of inestimable help in retrieving the patient's identity in line with the past, present and possible future.

  • Decision-making
  • Family
  • Ethics
  • Autonomy
  • Philosophical Ethics

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Introduction

Although shared decision-making (SDM) is not yet a common practice in health or palliative care, empirical research shows that patient groups benefit from SDM.1 ,2 Including the patient as a participant in the decision-making process is vital for good care, on legal grounds and from a care-ethical perspective.1 ,2 For patients are legally entitled to decide about their lives and bodies, but since care ethics views care as a relational practice, a decision about good care for a particular patient can only come about in a relational attuning process. SDM meets this relational view. However, even though including patients in these processes is advocated by care ethics, including them alone is not enough. For patients are no insular beings but embedded in relational networks. And these networks of partners and family prove to be vital in the process of coming to terms with illness, of digesting information, and of making decisions.

This contribution aims to combine philosophical and empirical research in a ‘hybrid’ approach. According to Margaret Urban Walker's3 care-ethical epistemology, scrutinising practices and analysis of ‘what is going on in actual moral orders’ is indispensable in order to avoid moral philosophers to reflect on their own assumptions and experiences alone. Walker's3 approach combines an empirically saturated reflective analysis with critical reflection. This paper also uses a ‘hybrid’ approach.

It starts with empirical research that uncovers the vital role of partners and the family in practices of SDM. We present and analyse two examples of terminally ill patients having to decide about treatment. The examples were extracted from a qualitative-empirical study that consisted of two phenomenological case studies and was conducted from a care-ethical perspective, looking into the lived experience of SDM of patients with metastatic, incurable cancer and into what they consider good care. The examples (a) problematise a one-sided focus on the patient's autonomy in the decision-making process and (b) show how empirical findings may lead to new questions regarding the idea of SDM in processes of illness and treatment. In the second part, therefore, we consider how a certain view of and connection between autonomy and justice dominates public and political debates on care, both in public policy and in institutional settings. Underlying these debates is a view of the self that is problematised from a care-ethical perspective. After that, the question is raised what theory may be useful in order to underpin the relational self advocated by care ethics. We propose an answer by elaborating on two normative care-ethical views of the relationals self, which are further supported by the radical relational view in the philosophical works of Paul Ricoeur. Hence, a rigorous conceptualisation of human relationality is proposed that may help us to think SDM anew, taking into account the ‘shared’ process of doctor and patient, and the shared life of patients, partners and family.

This paper aims to serve an ethical as well as a meta-ethical goal, that is, to develop a relational-ethical view on SDM and to do so by unfolding a ‘hybrid’ kind of ethics that draws on theory and practices (C Leget et al, forthcoming).

Two examples of relationality in SDM

This section presents two examples of patients with a severe illness and their experiences with decision-making. We present these examples in order to problematise theories of SDM that restrict the idea of SDM to the process between doctor and patient, thereby neglecting the patient's relationality with others. This relationality, however, appears to be of the utmost importance to the patients themselves, even though the doctors press them to decide independently. The examples are part of an empirical phenomenological study on the experiences of patients with decision-making.i We consider the brief examples as a source of moral knowledge that contributes to our conceptualisation of SDM.

The first example is about Keesii (aged 71 years) and focuses on the main subject of this paper: relationality. Kees is a retired minister. His wife Marijke is a professional caregiver who is recovering from a severe burn out. They have two sons and a daughter. In the Summer of 2014, Kees has a lump in his neck and is diagnosed with cancer. Two in-depth semi-structured interviews were carried out during 6 months of his illness with him and his wife together. In addition, data collection consisted of two site visits to the oncologist and an in-depth interview with their son as significant family member. In this vignette, several phases can be distinguished in which the patient is confronted with various (moments of) decisions.

During an observation of a conversation between the doctor, Kees and his wife Marijke, it is clear that the doctor checks information given by Marijke, by continuously turning to Kees. Kees, however, denies the information or expresses the hardship of having to clarify what he feels:Marijke: It seems at though the lump in his neck has grown bigger. I did not know whether this was something that I had to call you for. Doctor Wessels (turning to Kees): When complaints increase, you should call. Kees: I do not have any complaints. Marijke: Yes, you do. You also are more and more fatigued. Doctor Wessels (turning to Kees): What do you think? Kees: Well, I find it hard to say something about that.

Kees recounts numerous stories of people with cancer whom he has cared for as a minister. He tells what has happened to them, how their illnesses developed, how they acted, how their illness affected them and how they experienced the care they received. Every time he is asked to tell about his own experiences, he tells these stories of others.And of course I have hope, we want to stay together for a long time. But what cancer does to a person, one cannot predict. So it is unpredictable and therefore our expectation is unpredictable as well. You know very well that things are not well. But what is it that is not well? And to what extent can one influence that oneself? One can decide and one can be guided in that process. A very sad story; a man suffering from long cancer was operated, well, operated, he was recovering from it. And they had a son of 31 years old, the family pride […] He has a brain tumor. This young man, within a year, he fought for his life….(Kees, aged 71 years)

The stories seem to give him an idea of what he may expect. Nevertheless, they vary widely; therefore, they cannot give him any certainty. When making decisions, Kees is pressed by his wife to decide for himself. He, however, emphasises the need to decide together:I could not accept the idea that others decide for me. We together, if I have something to decide here in the house, yes, we then decide it together […] it is just, I cannot decide about it alone. I like to verify things together with others. We are both in it, we are in it together. (Kees, aged 71 years)

A second example concerns Johanna (aged 82 years), a widow who lost her husband to cancer after a marriage of 50 years, with five children, living independently in a home with a large vegetable garden. The care for the household, the garden, the children and a few animals has always been the centre of her attention. Her main goal was to have all live together in harmony. Two years after the death of her husband, Johanna develops health problems which turn out to be cancer. It starts with bowel cancer, which later appears to have spread to the lungs. The doctor has informed her about the options for treatment and has given her the task to decide about whether she does or does not want to start chemotherapy:Johanna: What I would like to know, doctor, is, what would you do if it concerned your mother? What would you advise her? Doctor Kampen: I cannot answer that, it is your body and your life. Consider this first for yourself, in quiet contemplation. Johanna: Yes, no, I understand. Of course you cannot say something about that.

Her children, who have always been supportive, support her in her deteriorating health and the decisions that she faces. The family ties grow even closer than before. Johanna expresses these ties and what they mean for her when she speaks of the close connectedness with her children:Then I talk to my children about what bothers me and then they keep saying: ‘If there is anything, just give us a call’. Well, that's what I do. For instance my son, he lives next door […] I can call him 24/7. […] We support each other, all of us. (Johanna, aged 82 years)

Both Kees and Johanna show how they understand themselves as relationally interwoven with others, and they stress the importance of family and partners.

However, the role of these people appears to be supportive and vital in the process of SDM, because the patients themselves seem to be less able to grasp the full reality. Others are vital in two, interconnected ways: they prove to be more able to understand medical information about the patient's condition and they are able to reduce the experience of complete chaos that overwhelms the patient.

For instance, Kees' wife expresses:I heard Kees' answer to the doctor's question [and that's when] I noticed that the one to whom it is all about listens differently than those accompanying him. [Kees] said that he did not know certain things […] but we all knew them right on the first day. He hears things differently, not how they really are […] for instance he doubted about the metastases in the lungs […] whereas he did know about it. (Kees' wife)

And Johanna's daughters play an important role in reducing her chaos when they help her to gain clarity between the positive and negative sides of a decision:She came to me with questions about what to do. And we as her children had agreed very clearly that we could help her to write down the pros and cons of a certain decision, but not by telling her what to do. (Johanna's daughter)

This illustrates that patients may be having a hard time facing reality. They may avoid confrontations and evade conversations in which their inevitable finality is discussed. In the two examples, Kees and Johanna at times seem to live inside a ‘membrane’ that seems to split reality in two. Inside this membrane, Kees and Johanna try to come to terms with their own reality, that is, the reality of their experience, which is a complex combination of disbelief, confrontation, hope, inner combativeness and alienation. The membrane functions as a protection for the other, outside reality, that consists of facing inevitable treatment decisions, medical and statistical information, chances and threats. This latter reality is better grasped by the partner and/or family members.

The need to reframe autonomy in SDM

Ideally, the process of SDM unfolds between the doctor and the patient, a process in which the latter is enabled as much as possible to decide autonomously, without interference, force or coercion by others, through thorough information and in deliberation with the doctor. SDM has been introduced as a response to a former paternalistic practice (‘doctor knows best’). The first movement has been the move towards ‘informed consent’, which transferred the responsibility of decision-making to the patients by informing them on the various options.4 With this transfer, the autonomy and control of the patient are increased, and the possible stress and anxiety as well.5 As a response to that, a middle ground was found in SDM. However, research shows that SDM is a practice full of tensions. The ideal and the practice are often wide apart, the practice is often complex and participants experience it very differently.1 ,2 In this complex practice, the ‘third party’ of the partner and the family may be experienced as an extra complicating factor,6–9 even if their participation and contribution are welcome in principal.10 ,11 For instance, a doctor may think that the patient and herself have carefully balanced all pros and cons, chances and risks and have reached a painstaking decision in the privacy of the consulting room, when all of a sudden the patient expresses doubts and questions that arose after deliberation at home, where his or her reality appeared less clear and unequivocal. It could appear as though the patient only objects under the influence of others. As a result, the patient's partner and family appear as a ‘third party’, which influences or exerts pressure on the doctor-patient relationship. And this may undeniably be the case, sometimes.12

However, as the empirical examples uncover, the ‘partner and the family’ do not appear as a third party, but they are already a consistent part of the patient's identity as the one who decides. In other words, if we look at the practice of SDM, we do not see the patient (nor the doctor) as an individual, but as one whose identity is entangled with others. A relational identity can be discovered in how patients express themselves in the process of SDM or act as relational beings. Their decisions may appear as unseparable from their lives with others, spent together over time. And as relational beings they may express their identity in the relations that they have, and by relations that they have interwoven in who they are, in practices of concrete care for and connectedness to others.

However, before we take a deeper look into the patient's dependency and the way in which this determines his or her identity, we need to see how presently the patient's autonomy is usually framed as self-determination that needs to be respected in a just society. This problematises the role of the partners and the family a bit further, as a certain, prevailing connection between justice and autonomy may lead to dismissing the patient's relationality altogether, also in SDM.

A tension between two ways of framing ‘autonomy’

Paul Ricoeur wrote: ‘The autonomy of the self will appear […] to be tightly bound up with solicitude for one's neighbour and with justice for each individual’ (p. 18).13 Parts of this view seems non-controversial and even self-evident in medical and social welfare environments, which is the parts on autonomy and justice. For several decades, the idea that everyone has a right to self-determination and free choice has been and continues to be expressed in the basic medical-ethical principle that each patient is owed respect for one's autonomy.14 Reforms of healthcare and welfare systems are also defended with the terminology of autonomy and justice. For instance in The Netherlands, autonomy and justice are connected together in public and political debates about how to keep our healthcare system affordable and accessible to any individual needing it.15 The Dutch government consistently and persistently argues that the system's affordability and accessibility is a matter of justice, and therefore everyone is encouraged to be ‘active citizens’, asked, expected and even forced to live independently, to organise (and pay for) self-care, to be autonomous, as long as possible.16–20 Autonomy is both commended as meeting the wish of the (all) elderly and the key to budget cuts. And since all who need care also want to live independently and want to make their free choices about treatment, the government sees it as a matter of justice to not patronise them and leave them their own responsibility to organise care in their private spheres as long as possible.19

But here the interpretation of Ricoeur falters. For he connects autonomy and justice with a term that is not often mentioned in this respect: solicitude for one's neighbour (p. 18).13 This does not match the dominant discourse in which ‘autonomy’ is mainly referring to ‘taking care of oneself’, that is, organising one's care for oneself, in case one gets sick, old or otherwise dependent. In Ricoeur's view, however, autonomy is not primarily about arranging relationships, tasks and responsibilities in order to receive care when necessary, but autonomy is related to giving care. His view, as well as the care-ethical relational view of human identity, has consequences for thinking about the self, which in turn has consequences for thinking about decision-making. For if doctors or nurses are confronted with objections that the patient expresses in relational terms, they may be tempted to ask the patient: ‘But what do you yourself want?’ The answer they may face could be a new question: ‘Whom do you mean? Myself as a partner, as a father, as a son, etc’.

In short, there are two distinct views of autonomy: one in which the ‘auto’ who lives by one's own laws is a self apart from relations or context on the one hand; and one in which the ‘auto’ is a self that is inextricably relational, tied up with others to such an extent that the self is relational to its core. This article tries to elaborate this second way of framing autonomy, in order to contribute both to care-ethical theory and to the understanding of the practice of SDM and the ones involved in SDM. Reframing autonomy has consequences for understanding the patient, and the possible role of the partner and the family in the process of SDM. For SDM is intended to give the patient an active participatory role in the process of decision-making in medical or palliative care, and hence to counterbalance and correct a doctor's or nurse's dominance or paternalism in these decisions. This fits with a relational view of care. Now what theories may be helpful to think through the relationality that appears to be vital in processes of SDM?

Care-ethical theories of relational identity and dependency

In order to reconceptualise relationality, we first turn to care ethics. After its conceptual origin in psychologist Carol Gilligan's correction to Lawrence Kohlberg,21 care ethicists like the American Nel Noddings,22 ,23 Joan Tronto,24–26 Virginia Held,27 Margaret Urban Walker,3 Fiona Robinson28 ,29 and Eva Feder Kittay,30–32 and the European Selma Sevenhuijsen,33 Elisabeth Conradi,34 Christa Schnabl,35 Annelies van Heijst,36–38 Tove Pettersen39 and Fabienne Brugère,40 ,41 all have contributed to the care-ethical body of knowledge, building a rich source of thinking about human dependency. Dependency in their conceptualisation pertains to the more obvious dependency of care recipients and includes the dependency and vulnerability of any human being in any condition.

Eva Feder Kittay's view of dependency and nested relationality

Equality, Eva Feder Kittay argues, is an illusory ideal and a fiction that especially damages the women that demand to be included in it.30 For it conceals the factual dependency of people, which causes the a priori exclusion of those who are more dependent than others from political and ethical thought. We will present Kittay's view on dependency, and subsequently the view of van Heijst, as examples of care-ethical conceptualisation of dependency.

As with all philosophers, care ethicists' thought is connected to their biography. In Kittay's case, she has never hesitated to disclose her philosophical position as inspired by personal experience:It is first as a parent that I have encountered the issue of disability. My daughter, a sparkling young woman, with a lovely disposition, is very significantly incapacitated, incapable of uttering speech, of reading or writing, of walking without assistance, or, in fact, doing anything for herself without assistance. She has mild cerebral palsy, severe intellectual disability, and seizure disorders. Although her cognitive functioning appears limited, she loves music, bathing, good food, people, attention and love. (Some of the finest things life has to offer.) She is fully dependent and while at the age of 40 she (like us all) is still capable of growth and development, it is quite certain that her total dependence will not alter much. I have been learning about disability from the perspective of one who is unable to speak for herself; and it is from her and her caregivers that I have come to have a profound appreciation of care as a practice and an ethic (pp. 51–52).32

Rooted in this personal experience, Kittay develops her philosophy of dependency, by arguing against the dominance of equality in mainstream ethics, which conceals dependency.20 ,32 As a consequence, people whose dependency cannot be concealed cannot measure up to the idea of equality. Kittay speaks of the dependent person as the charge, that is, a person who cannot arrange the necessary care oneself, but ‘needs to be in the charge of another for her care and protection’ (p. 31).30 This also expresses the inevitable passive dependency of the charge: others need to arrange and perform the indispensable care. The charge is the focus of attention and efforts of the ‘dependency worker’. Kittay uses this terminology in order to encompass all kinds of ‘dependency work’ (p. 30),30 that is, work for those who depend on others. She stresses that it is dependency work as it is really work, not some kind of romantic or idealistic attitude or emotion. It is paid and unpaid, professional and informal, work. What is more, the term ‘dependency worker’ expresses that this worker cannot easily be missed. Since there is someone dependent on him or her, the dependency worker has a ‘derivative dependency’ (p. x),30 that is, only if others take over the dependency work, he or she is set free to do other things. Hence, dependency is a characteristic of the care receiver, and of the caregiver.

That is why Kittay advocates the view of care as nested relationality (see table 1), which she has developed in response to the voluntaristic model and the vulnerability model of moral obligations (pp. 54–73).30

Table 1

Moral obligations, Eva Feder Kittay

Kittay advocates the model of care as nested relationality: ‘each individual is nested within relationships of care’ that, as nests, ‘embrace the needs of each’ (p. 66).30 It is a ‘linked or nested set of social relations’, ‘a social cooperation that depends on these nested relationships and obligations’ that allow for a social form of reciprocity (p. 68).30 Since the charge is seldomly capable of the ‘exchange-based reciprocity’, the dependency worker may receive reciprocity from other persons in the social network in order to sustain her as she sustains the charge (p. 68).30 This leads Kittay30 ,32 to plea for another discourse that starts with dependency, and for the acknowledgement of social obligations regarding the dependency worker, and for political responsibility in this respect. She here concurs with many other care ethicists.23 ,24 ,26 ,40

Hence, if a society (re)organises care in ways that presuppose equality, for instance, in the wish to live at home as long as possible, in the ability to organise one's care network, and to be willing to seek necessary care in one's own social network, inequality with respect to ability, capability, willingness and possibilities is concealed. The argument then starts with the norm that everybody is equal and dependency is the exception. Kittay's own life's experience that some people who can never organise this care, but depend on others for their care, leads her to argue the other way around. Her philosophical strategy is to build an argument that starts with acknowledging human dependency.

In conclusion, Kittay proposes to conceive of caring as a relational practice that is embedded in a structure of nested relations. The relations of dependency work in the intimate setting are embedded in the intimate circle of the partner and the family, the larger nests of neighbours and friends and the larger social networks up to the organised society. In many public and political views of care, this perspective remains undiscussed. For instance, in the Dutch transition of the healthcare system the focus is entirely on the more or less independent person with caring needs who is able to find his or her way first to relations and then to those institutions that may fulfil the necessary social support. The support is then focussed on this person's needs, and much less on those of the dependency worker. Kittay's plea still holds that the dependency worker's support is a social and political task, even more so since we are increasingly expected to be this dependency worker.

Annelies van Heijst's view of mutual dependency in professional care

To the care-ethical plea for a more profound recognition of human dependency, the Dutch Annelies van Heijst36 ,38 has added a strong plea for recognition of the dependency and vulnerability of the caregiver, as human being, and within the caring relationship. For the caregiver (also the professional) is vulnerable and precious too (pp. 181vv),38 and neediness exists with both participants in the caring relationship. She develops a layered idea of the caring relationship that enables her to criticise the cultural blurring of asymmetry (p. 135), the allergy to inequality (p. 140) and to uncover both actual dependency of the care receiver and the simultaneous neediness of the caregiver (p. 144).38

van Heijst argues that professional care suffers from the blurring or forgetting of asymmetry (p. 135).38 This is represented by the way that societal relations in late modernity are depicted as equal through the use of vocabulary such as ‘client’ or ‘consumer’, also in caring relations. The dependency of one in need of care, whom we used to call patient or dependent, is covered up by these terms and the suggestion is raised of an exchange reciprocity between equals: one offers, the other selects what is preferred; one sells, the other buys. This is what happens on the cultural surface. However, beneath the surface one can discover the actual, factual dependency of patients, if their needs are recognised. Suffering limits freedom and forces one into the dependent position. But if one looks even deeper, according to van Heijst, one can discover that both the patient and the caregiver are dependent and vulnerable. She calls this the ‘neediness on both sides’ or ‘double structure of neediness’ (pp. 144–145).38 This double structure does not hide the evident asymmetry of the inequality of need, but recognises the common condition of neediness of both professionals and patients, that is, the need of a relational web of human life for mere survival and for a meaningful life (145).38 Hence all, patients and professionals, and partners, family, dependency workers, are in need of fellow human beings.

Returning to SDM, one may conclude that care ethics challenges the presupposition of equal, empowered, capable, freely choosing participants. The presupposed commonality of these features in a so-called shared process conceals the actual and factual dependencies and vulnerabilities at hand. Even if professionals do their utmost in order to make this a shared decision, the positions of the participants differ fundamentally. Although everybody is ‘vulnerable-in-principle’, the situation is characterised by a huge ‘dependency-in-fact’.3 The former is incomparable to the latter when it comes to SDM: SDM is about one person's body, life, future and not about the other person's body, life or future. One of the persons is inevitably and inseparably involved in this singular case, the other is involved in other cases as well. One needs to entrust and commit oneself to the other, the other does not. One is in chaos, seeking for support and to regain clarity, the other is not. SDM that conceals such dependencies and vulnerabilities is harmful per se. And then we have not even taken the dependencies and vulnerabilities of the relational web of the patient into account.

Paul Ricoeur's relational self

After having taken a thorough look at the mutual dependency of caregiver and care receiver (both depending on the other), a third dimension of dependency needs to be discussed, that is, the care receivers' dependency of their partners and families. Care ethicists have explicitly elaborated on the variety of dependencies beyond the doctor-patient relationship and have included the broader relational network, like Kittay's conceptualisation of dependency work and the nested relationality in which it is practiced. At this point, however, a view is still missing of partners and family and others who are somehow relationally involved without necessarily being a ‘dependency worker’. These committed others may be of crucial help, as the empirical examples suggested. What theory is helpful to think of this relationality as supportive for retrieving clarity and as coconstitutive of the patient's identity?

For this purpose, we turn to the work of the French philosopher Paul Ricoeur (1913–2005). Dialectics is a key term to his work, meaning that instead of thinking in oppositions or dichotomies, in which two positions are thought as opposite or separate, he thinks in terms of ‘tension’. So instead of ‘taking sides’ with one point of view, Ricoeur includes both positions in his thought, aims to keep them in a tensive relation and to endure this tension. (In comparison to Hegel's dialectic, this is the essential difference: Ricoeur does not aim for synthesis.) By doing so, Ricoeur expresses his conviction that reality is best understood by searching for a totality in which both of the conflicting viewpoints together add to our understanding. Hence, the tension that Ricoeur construes by holding contrasting viewpoints together is a fruitful and productive tension or dialectic (p. ix).42 His dialectics can also be discovered in his view of the self, as the self both coincides with the self (in idem) and can consider ‘its self’ reflectively (as ipse) and comes into existence in the tension between ‘oneself’ and ‘others’, intersubjectively. Similarly, Ricoeur43 keeps the tension alive between thinking and feeling, passivity and autonomy, vulnerability (fragility) and capability.

The same dialectic tension is at play in Ricoeur's non-dualistic view of the relation of the self and others. Self and others are not opposed but included in this dialectical tension that characterises the subject itself. The tension is not outside the self, but interior to the self, as the self cannot be thought of without others. A large part of the self's identity is made up of identifications with values, norms, ideals, examples and heroes, in which the self recognises itself (p. 121, emphasis in text).13 ,44 Through identification with others (the other in Ricoeur's thought is always the plural ‘others’), these others are included in the composition of the self. Through this process of internalisation the initial effect of ‘otherness’ is annulled, or at the least the process transfers the effect from the outside to the inside (p. 122).13 ,44 In Ricoeur's own explanation of the title Oneself as Another, he expresses this same thought: Oneself as Another suggests from the outset that the selfhood of oneself implies otherness to such an intimate degree that one cannot be thought of without the other, that instead one passes into the other (p. 3).13

The self composes its identity by keeping these tensions alive. The dialectic moves between some concordant idea of the self that gives unity to the composition on the one hand, and, on the other, reality in which things happen that influence or threaten the subject's identity (pp. 140–141). (ref. 13, cf. ref. 44) The composition of identity is a process of finding a new arrangement, a new plot that includes discordances and offers new concordance (pp. 140–151,13 pp. 99–10445). The (active) decisions and the (passive) experiences and coincidences are brought together in the process of configuration, and the narrating self is not an author, but at best a coauthor of one's existence, as Ricoeur argues: “By narrating a life of which I am not the author as to existence, I make myself its coauthor as to its meaning” (p. 162).13 Hence, narrative identity is constituted in a configuration of the capable self (eg, capable of deciding) and the undergoing self (eg, what happens to the self). And this identity, although being recognisable as ‘the same’, does not have a fixed plot. It finds a unity that is rather always temporary in a continuous process of telling and retelling, as it is and can be reinterpreted again and again (p. 148).13 ,44

In elaborating the idea of narrative identity, the partner and the family are discussed in various ways. Ricoeur argues that, ‘before any egological self-awareness’, hence before we have the ability to think about ourselves or before we are subjects of perception, action, imputation or rights, we are ‘priceless objects’, that is, adopted by the father and by the mother, as soon as she has accepted or chosen to ‘keep’ this fetus and it becomes ‘her’ baby and she gives birth to it (p. 193).45 In other words, the call of others precedes and founds our self-designation, for before we can say ‘I’ we have been literally inscribed in public records (like a birth certificate) by the speech act of ‘naming’ and registering ‘who’ we are (p. 54,13 p. 96,45). Before we recognise ourselves, we have been recognised in terms of lineage: ‘the son of….’, ‘the daughter of….’ (p. 193).45 Hence, our ‘own’ narratives are interwoven with the narratives of others, even before and after the existence of our narrative self. But family is also an institution that connects the private and the public sphere (p. 191).45 After all, parental and marital relations are not a purely personal or private matter, but are codetermined by formal, juridical limitations and regulations, which determine what marriages are forbidden (eg, between siblings) and what relations are unacceptable (eg, incestuous, pp. 192–196).45 In the family, vertical bonds of the family line and horizontal bonds of marital bonds come together. These too can be woven into the narrative fabric, for instance, as a family name, having been named after a family member, a family legend, all of which may be part of the self's narrative (p. 193).45 Understanding oneself as the son or daughter of someone takes place at the intersection of what has been given (the relation, the name, the legend) and what is internalised, that is, in what one recognises or not and what is included in or excluded from one's narrative (pp. 193–195).45

Connecting theory with practice: having relationships or being relational

In light of Ricoeur's hermeneutics of the self, our view of relations shifts from ‘having’ a partner and a family to ‘being’ a partner and a family member. In everyday language, we may be used to think of our relations as things that we ‘have’. But Ricoeur's philosophy transfers this relational connectedness (including the tensions that are involved) from the outside to the inside of the self.

In the doctor's office or at the patient's bedside, this view may permeate the consciousness of both patient and doctor by a similar replacement of ‘having’ by ‘being’ (see figure 1). This means that the others, whom I could see as ones that I have a relationship with (left hand side of the figure), also make up my identity (right hand side of the figure). If the patient is seen as one who has a partner, a daughter, a father, a disabled brother, a business with personnel, a friend or pet, these relations are a ‘third party’ that remains at a certain distance of the patient's ‘self’. As a consequence, during the process of SDM these relations could be considered as standing apart from the patient, and the patient could be pressed to consider his own decision, regardless of his relations. If, on the other hand, the same relations are designated with being: he is a partner, a father, a son, a brother, a boss, a friend and an owner, those relatives are part of his own identity. His identity is coconstituted by his relations: they make him the person he is. For instance: a committed partner to his wife for 20 years, the father of a daughter who is not yet living independently, the son of a father who increasingly depends on him, a brother of a disabled brother and contact person of the institution in which the brother lives, etc. As a consequence of seeing a partner and the family this way, they are not a ‘third party’, but they are always already at the table during the process of SDM and present in the patient, since they are part of who he is. The process of SDM in this case cannot dismiss the patient's relationality, but needs to seek a way to consider what these relations mean for the patient's identity and hence for his or her decision.

Figure 1

Shared decision-making and relational identity, Paul Ricoeur.

Looking at it from this radically relational perspective, the professional caregivers' interaction with partners and the family also changes. For if a professional caregiver repeatedly hears the patient mention these other persons' perspectives (“but my mother still needs me”, “my daughter will get married in four months”, “my successor is not yet ready to take over my business”), she may be tempted to ask: “But what do you want yourself?” This question expresses that the patient's relations can be (temporarily) put aside in order for the patient's individuality to come to the fore. From Ricoeur's perspective, the only answer that a patient can give to this question of what he wants himself would be: “Whom do you mean? Myself as a partner, myself as a father, myself as a son, myself as a brother? etc”. A question that may sound rhetoric, but is not. It is a hermeneutic question, asked by a ‘self that seeks its identity on the scale of an entire life’ in order to find a course of action in line with that life (p. 115).13

Then, if the patient is considered as being relational, the partner and family may be part of the patient's identity in such a way that they play a vital role in reconstituting the self's identity in times of chaos and overwhelming complexity. If the patient is not able to oversee his or her situation, to ‘digest’ information, to consider alternatives and come to a clear conclusion, the others may be crucial assistants for recovering the self, its past, present and future. They too may play a role in the composition of the self's narrative, not as coauthors of its meaning, since this remains the patient's responsibility, but as coeditors perhaps, making suggestions for possible courses of events, fitting with the life lived by the patient up to this point. In processes of SDM, as we have seen, the patient relied on intimate others for help, support, sorting things out and at least deliberating together (Johanna) or even deciding together (Kees). The others were no threat, but rather indispensable in the process of coming to terms with illness, and deciding about treatment.

To conclude: towards a more shared ‘SDM’

The increased application of SDM meets the idea of care as a relational practice to a substantial degree, making the decision on treatment the result of a process that unfolds between the doctor and the patient. Empirical research, however, problematises the idea of the patient as capable of autonomous deliberation and decision, when facing the task of coming to terms with (terminal) illness, probable suffering, and approaching demise. However, in some cases, as we have aimed to show, the patient is neither capable nor willing to retreat to his or her individual autonomy, but needs and wants to involve others in the decision-making process. In these cases, others are not considered as a threat to one's individual rights, but rather as indispensable support for asserting one's rights.

Our analysis of two ways of framing autonomy has led to a proposal for a radical relational view of autonomy. The dominant view in our Western culture is that of autonomy as opposite to relationality, as if one can cut-off one's relations from one's identity and by doing so, retrieve one's ‘true identity’. As a counterweight, we propose a radical relational view of autonomy, which takes inevitable human dependency and vulnerability into account, and makes the others coconstituents of one's identity. Others, then, are not outside the self, as possible ‘invaders’ or ‘threats’ to the self's identity, but others are also part of the self, interwoven with the self's identity, through the self's narrative over time. And these others, whose identities are inextricably involved in the self, can help to retrieve the self by uncovering the self in the past and in the present and by ‘co-editing’ the future self as in line with this life's story. We have suggested that Paul Ricoeur's idea of the narrative self can help deepen the care-ethical view of the relational self. By including these relations in processes of SDM the ‘shared’ of SDM becomes more shared, in a network of relations that supports the making of decisions.

References

Footnotes

  • Contributors All authors contributed substantially to the analysis and interpretation offered in this paper. The IvN drafted a first draft, drawing on her PhD research and the responses to two paper presentations. The IvN and MV coedited the manuscript. The AS and JdL conducted the qualitative-empirical research from which the two examples were taken as well as the interpretation of the role of partners/family; they were supervised by the MV. All authors approved of the submitted manuscript.

  • Competing interests None declared.

  • Patient consent Obtained.

  • Ethics approval The Ethics Committee of the hospital involved.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • i The empirical findings will be published in another paper, forthcoming.

  • ii Pseudonym.

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