A shelter from the abyss: exploring Cicely Saunders’ vision of hospice care through the concept of worldview

Abstract

Over the past two decades, a debate has arisen concerning the history and philosophy of hospice and palliative care. This critical essay extends this debate by linking the analysis of Dame Cicely Saunders’ writings with the concept of worldview, exploring the modern hospice movement vis-à-vis Saunders’ approach to terminal care. Worldviews as cultural classifications of reality provide groups and individuals with meaning to navigate everyday and liminal situations. Using this concept in connection to the discipline of the sociology of knowledge, it is possible to grasp how the origins and principles of modern hospice care, from which current palliative care practices evolved, relate to the sociocultural environment of the postwar era in the West. The analysis focuses on a selected body of Saunders’ writings, mainly written in the 1960s and 1970s, and discusses different components and functions of her revolutionary care paradigm. In this essay, I show that Saunders’ vision of hospice care entails much more than a set of health care practices; it is a complex construct of knowledge and ideas that offers distinct procedures to shelter the dying from pain and loss of meaning. Her vision builds on medical advances and incorporates norms and attitudes related to secularised Protestant and New Age culture, which fostered privatised types of religion and individualistic ideologies and theodicies.

Introduction

The philosophy of hospice and palliative care has become the subject of lively debate in the past two decades, which illuminates origins, history, practices, ideas and ethics related to the care of persons living with life-threatening illness.^1–7 In this critical essay, I aim to contribute to this debate by exploring Dame Cicely Saunders’ vision of hospice care using the concept of worldview in connection with sociology of knowledge. In doing so, I intend to provide an account of her vision, which provides fresh insights into the (late) modern Western orchestration of dying and death. Basically, ‘worldviews can be understood at implicit and explicit levels of discussion in relation to processes of meaning-making, attachment, and orientation to the world’ (p. 19). ⁸ As cultural classifications of reality, worldviews move thought, action and feelings and influence the ways people navigate and experience everyday life and liminal situations, for example, when approaching death in a hospice. Narratives and ideas contained in worldviews shape ideals of a ‘good death’ and legitimise the social management of dying and death in health care settings.^9–12 The principles that Saunders formulated for St Christopher’s hospice in the 1960s and 1970s are the basis from which modern hospice and palliative care philosophy developed and can be seen as central pillars of the modern hospice movement. ¹³ Criticising the medicalisation of death, Saunders offered a new approach to how the experiences of dying and death can be viewed, managed, and celebrated within a new psychological landscape. ¹⁴ As I will show, this approach and its function in the care of the dying can be read as a time-specific, socially situated response to the universal problem of suffering and pain. It broadly reflects the cultural climate of the postwar period in the West, which, along with consumer culture, promoted privatised types of religion and individualistic ideologies and theodicies.^15,16 The concept of theodicy has a long tradition in Christianity as well as in other religions, and serves, generally speaking, ‘to meet the universal human need for meaning at the highest level’ (p. 74). ¹⁶ In a broad sense, sociologists define theodicies contained in worldviews as both religious and secular interpretive vocabularies that help one face despair and explain evil, injustice, and death. ¹⁷ Throughout history, these vocabularies and their associated beliefs and rituals have provided an intersubjective foundation to cope with existential insecurity, loss and death. In what follows, I aim to show that Saunders’ vision of hospice care provides such a foundation, in which existential problems in dying, such as loss of meaning and pain, are dealt with using both modern medical knowledge and practices adapted to the secularised and individualised culture of modern Protestant societies. By conceptualising Saunders’ ideas and work as a socially and culturally situated body of knowledge and ideas that offers a framework to process the existential experience of dying, this essay invites further reflection on the beliefs and values that underpin the theory and practice of historical and current models of palliative care delivery.

To explore Saunders’ vision of hospice care, in this essay I focus on a selected body of her scientific writings. David Clark, ¹⁸ who has worked extensively on Saunders, estimated that there are in total 234 publications in her name. In addition, she left behind many letters and correspondence with friends and work colleagues from across the globe. ¹⁹ The types of publication range from journal articles, reviews and letters to authored and edited books. Saunders wrote her first paper in 1957, when she was still a medical student; ²⁰ her most recent publication was published in 2003. Her journal articles and books address various medical and ethical issues in modern hospice care and advocate the ‘total care’ of terminally ill patients. Furthermore, these publications communicate the achievements of hospice care to both a scientific and lay audience. In this essay, Saunders’ scientific writings serve as documents to discover essential principles and ideas incorporated into her approach to terminal care. The methodology of this essay is mainly based on a close reading of her published papers in the1960s and 1970s, in which the basic principles of modern hospice and palliative care evolved. Another important source to understand key components of her approach to hospice care was her book Watch with Me: An Inspiration for a Life in Hospice Care. ²¹ The analysis is supplemented with existing literature that examines aspects of Saunders’ work relevant to the topics explored in the following pages. Before turning to these topics, I will set out the blueprint for this essay.

‘Meaning carved out’: worldview as nomos

The theory of sociology of knowledge as initially outlined by Peter L. Berger and Thomas Luckmann in their seminal book The Social Construction of Reality ²² serves here as a broad framework for understanding the social–cultural situatedness of Saunders’ paradigm of hospice care. Sociology of knowledge, generally speaking, is concerned with how different forms of knowledge (scientific, religious, common-sense, etc.) are distributed and maintained by individuals and institutions to construct reality in specific social settings. ²² Under the pluralistic conditions of modern societies, there is a multiplication of bodies of knowledge that establish ‘multiple realities’ (p. 35) ²² and perspectives. Berger and Luckmann ²² argue that each of these perspectives ‘with whatever appendages of theories or even Weltanschauungen, will be related to the concrete social interests of the group that holds it’ (p. 103). Weltanschauung – that is, worldview – is a versatile and widespread cultural concept in the long history of Western thought. ²³ Historically, the concept of worldview has its origins in German idealism. For Immanuel Kant, ²⁴ Weltanschauung simply referred to the sense perception of the world. In the 20th century, the influential Hungarian sociologist and philosopher Karl Mannheim ²⁵ conceptualised worldviews as pretheoretical entities that guide an individual’s everyday action and perception, whereas recent strands of thinking define worldviews as implicit and explicit constellations of beliefs, values, and attitudes.^8,26 Moral and social norms, as well as ideas about the structure of reality, the cosmos, human nature, and the meaning and purpose of life, can be seen as components of worldview, which rely on socially shared knowledge, expression in language, bodily action, and material objects. In this sense, ‘worldviews are of central importance for how we understand our lives and live them. A worldview is life orienting: it expresses a particular way of living in the world’ (p. 2). ²⁶ In The Sacred Canopy, Berger ²⁷ introduces the Greek concept of ‘nomos’ to describe this life-orienting function of worldviews, which enables individuals to integrate their experiences and feelings into structures of thought and meaning maintained by societies and its members. According to Berger, the nomos shelters humans from the chaos of the universe and is also of particular relevance to deal with liminal situations:

Seen in the perspective of society, every nomos is an area of meaning carved out of a vast mass of meaninglessness, a small clearing of lucidity in a formless, dark, always ominous jungle. Seen in the perspective of the individual, every nomos represents the bright ‘dayside’ of life, tenuously held onto against the sinister shadows of the ‘night’. (p. 53) ²⁷

Death obviously represents such a formless and dark jungle that cannot be experienced by the living. The reality taken for granted and secured by the meaningful order of a society is permanently threatened by the event of death, and therefore, as Berger ²⁷ argues, every society thus develops procedures to help its members cope with and avert the threat of chaos and help them ‘remain “reality-oriented”’ (p. 54). Legitimations of a social world’s reality in the face of catastrophes, pain, and death, as traditionally offered by religion and it theodicies, can take different forms at different times and places. They offer collectively shared interpretations of fundamental questions regarding human existence that are materialised and made tangible in rituals, practices, and objects. In modern, highly individualised and secularised Protestant societies, meaning can be created by drawing on a variety of religious and secular resources, ²⁸ yet a growing number of persons are choosing individual strategies for coping with adversity rather than engaging in collective performances of ritual practice. The socially binding force of normative Christian orientations has declined because of social differentiation in modern Western societies. ²⁹ As Colin Campbell ¹⁶ pointed out in regard to post-Calvinist solutions to the problem of meaning in the (late) modern era—in particular, in New Age culture—‘there is little self-transcendence through identification with the collectivity’; instead, ‘the attempt is made by individuals to engage in transcendence by identification directly with nature and the cosmos’ (pp. 79–80). The overall function of the different procedures, however, which the meaning structure of nomos provides for the interpretation of problems such as suffering, remains similar. For individuals, as Berger ²⁷ stressed, it is primarily essential that their experiences ‘have a place within a universe that makes sense’ (p. 94), allowing them to go through difficult situations and eventually experience catharsis.

On the following pages, I attempt to show that Saunders’ vision of hospice care constitutes such a universe, in which the experience of terminal illness can be processed and rendered meaningful. To substantiate this thesis, I focus on three themes that illuminate how the modern hospice creates opportunities to deal with the liminal situation of dying: (1) against pain and emptiness: possibilities for transcendence; (2) holism as a therapeutic theodicy; (3) relational ethics and dividual personhood. First, I outline how Saunders’ vision builds on the metaphysical idea of a ‘will to meaning’, which is (re)interpreted in terms of the spiritual jargon of the 1960s and 1970s. Second, I illuminate the intense individualism and holism of Saunders’ vision by drawing attention to her consumer-oriented approach to care and the phenomenon of ‘total pain’. Third, I discuss the relational ethics of care and its practices, which, as an essential part of the care paradigm, should comfort the dying.

Against pain and emptiness: possibilities for transcendence

A central procedure of Saunders’ approach to terminal care is to alleviate pain in the best way possible and to offer opportunities to transform it into something ‘meaningful’. Up-to-date pain control aims to help patients not to fall into a permanent state of despair, while the human being’s search for meaning is assumed to be an existential given and promoted in order to experience personal growth and catharsis in dying. I elaborate on these issues in this section, starting with a brief outline of Saunders’ revolutionary approach to pain control.

After an encounter in a hospital with a Polish patient in 1948, Saunders sought ways to improve the situation of terminally ill people. For her, the challenge was to undertake appropriate pain and symptom control and to find a more suitable place than hospitals to come to terms with the end of life. ³⁰ Saunders’ key medical innovation was the oral administration of opiates to patients, which was highly unusual at that time. Mary Baines, ³¹ who worked with Saunders at St Christopher’s hospice, reminds us that in the 1950s and 1960s doctors held the view ‘that strong opioids were only effective when given by injection and that tolerance and addiction would inevitably occur if they were given regularly’ (p. 224). Initial clinical trials by Saunders proved that patients remained pain free and awake when given opiates orally, and in the course of these trials larger clinical studies were conducted that explored the effect of morphine and diamorphine for pain control. ³¹ The following comment from Saunders ²¹ suggests that the goal was that up-to-date medicine, along with comprehensive care, should help patients to experience consciously the last stages of life:

Sadness is appropriate and should be faced and shared. It calls for a listener, rather than for drugs, although a combination of the two may help to lift an inhibiting load and enable a patient to tackle problems that had seemed unmanageable. When such treatment is carefully assessed and reviewed, this is not to manipulate the mind but to give it greater freedom and strength in facing reality. (p. 24)

Advocating herself a Protestant work ethic, Saunders aimed to support patients to work through negative feelings and emotions rather than to avoid this unpleasant reality: ‘However hard it may be to face the approaching parting it helps to stay with as much truth as possible to work through the anxiety and grief it brings’ (p. 23). ²¹ Inspired by Viktor Frankl, an Austrian neurologist and psychiatrist who had survived Auschwitz, she was convinced that everyone could find meaning in suffering. Addressing the problem of despair and hopelessness, Frankl ³² noted, ‘Even the helpless victim of a hopeless situation, facing a fate he cannot change, may rise above himself, may grow beyond himself, and by so doing change himself. He may turn a personal tragedy into a triumph’ (p. 147). Saunders ²¹ shared Frankl’s thought that human beings have a ‘will to meaning’, which is intensified in the difficult and dark moments of life: ‘Coming to terms with loss intensifies the ever present search for meaning’ (p. 25). Moreover, she was convinced that people have the strength to manage their dying process and derive meaning from it when given proper support: ‘People who are near to death have a capacity both to transcend the present and to alter the nature of the past by their reconciliation with themselves and with others’ (p. 22). ³³ In the context of the modern hospice, however, Frankl’s existential search is reinterpreted as a spiritual search, as Tony Walter argued. ³⁴ According to Walter, ³⁴ a great deal of the palliative care literature follows this interpretation and assumes that ‘although not all patients are religious, all are spiritual in the sense that they have existential concerns about the meaning of their life’ (p. 133). For Saunders, spirituality meant, broadly speaking, the human’s desire for meaning ³⁵ that allows one to cope with these concerns, leading at best to personal growth and the experience of truth at the end of life:

We believe this as we see that death itself is something quite distinct from the process of dying and that just as many people make it the greatest achievement of this part of their lives, so they show us truths beyond the purely material world. (p. 2) ³⁶

This comment indicates that death is conceptualised as a kind of spiritual achievement, in which the ephemeral material world is ultimately transcended. For Saunders, the event of death is not merely physical death, meaning the final disintegration of the body, but the moment of the emergence of some deeper truth. Another passage from her writings confirms this reading:

The less her body could do the more her spirit shone, in love and amusement and a clear-sighted wisdom concerning life and those she met. Body and mind are linked indissolubly but they are of much less account than the spirit whose purposes they serve. That is not only unique and irreplaceable; it is also indestructible, stronger even than the light and energy of the star which streams across the universe millions of years after its source has ceased to exist. (pp. 2–3) ³⁶

The process of transcending the mortal body through the indestructible capacity of the human spirit, however, which in the case of the abovementioned patient leads to an aura of a clear-sighted wisdom, does not follow a predefined protocol or shared rituals but is an individual task and quest in Saunders’ vision of hospice care. Reflecting the mentality of the individuating revolution of the 1960s, in which the search for an authentic way of living became a mass phenomenon, ³⁷ she conceptualised the hospice as a place of self-transcendence and self-discovery:

The modern hospice is a resting place for travellers but above all it is concerned with journeys of discovery. For patients, a discovery of what is most lasting and important for them as they unravel some knots of deceit and regret. (p. 61) ³⁸

As I highlighted earlier, appropriate pain control should facilitate patients’ conscious embarkation on these journeys, which, according to Saunders, ³⁹ finally lead to ‘a sort of homecoming’ (pp. 70–71). By associating death with homecoming, she confirms the modern idea of subjectivity as continuity which is made complete at the end of life. Lars Lovlie ⁴⁰ elucidated this idea by three images: ‘the “thread of life”, the “circle”, and the “core”’ (p. 106). According to Lovlie, ⁴⁰ the idea of the circle or continuity serves to link ‘the origin (arche) and the goal (telos) of life, as in the Romantic vision of the child unfolding its innate abilities and talents towards a final ripening’ (p. 106). In Saunders’ approach to terminal care, patients are encouraged to finish their path and to close the circle of life when reaching death. To give proof of the final ‘ripening’ of patients, who worked through the grief and anxiety brought by the process of dying, she published numerous photographs and sketches, depicting their serenity and calmness (Figure 1).^39,41 For Saunders, however, photography and art were not simply a tool to communicate the achievements of hospice care but also a means to capture a sense of each patient’s individuality. She held that ‘science tries to look at things in their generality in order to use them’, whereas ‘art tries to observe things—and people—in their individuality in order to know them’ (p. 129, cited in Clark ¹⁹ ). Therefore, she not only took photographs herself but also encouraged patients to engage in conversation and artistic practices to express their feelings and emotions. These practices should facilitate the abovementioned journeys of discovery and provide important tools to achieve personal growth and eventually experience catharsis in dying. In these journeys, feelings of fear, anxiety, and despair should be transformed into positive emotions, such as serenity and calmness.

Figure 1.

Sketches of two patients shortly before death published by Saunders’ in 1965 to promote hospice care. The drawings are based on photographs hold by the King’s College London Archives. It is not clear if the AJN received the illustrations from Saunders, or the journal commissioned them. The second option, however, seems more likely according to David Clark.

By and large, the presumed human’s will to meaning, spirituality, and the design of different ‘self-discovery practices’, such as conversation, narration, photography, and art can been seen as techniques that should prevent a sense of profound emptiness in the confrontation with death, leading at worst to suicidal thoughts. In this sense, the meaning structure provided by these ideas, beliefs, and practices can be interpreted as a late (modern) form of theodicy that helps patients to face despair and offers them opportunities for self-transcendence. Colin Campbell ¹⁶ argues from a psychological standpoint that ‘theodical systems assist individuals to handle their emotions’ (p. 75), offering beliefs and practices to release emotions and ‘to turn negative feelings as fear, anxiety, or despair into the positive ones of calm, confidence, optimism and contentment’ (p. 76). ¹⁶ The modern hospice as a place of self-transcendence and self-discovery is designed to provide a space for this transformative work, which is adapted to the individualistic culture of the postwar era. In the next section, I elaborate on Saunders’ emphasis on individualism and link her holistic understanding of pain with Campbell’s psychologically inspired notion of theodicy.

Holism as a therapeutic theodicy

Important principles incorporated in Saunders’ approach to modern hospice care, alongside the ‘will to meaning’ and the focus on spirituality, are autonomy, self-determination and holism. This creates further possibilities to cope with the experience of dying without reference to and identification with traditional religious authorities. Saunders ²¹ was aware that ‘many, both helper and patient, live in a secularised society and have no religious language’ (p. 36) and thus upheld patients’ freedom and autonomy of choice. Her consumer-oriented approach to terminal care, which, according to David Nash, ¹⁴ produced ‘a potent blend of secular help and spiritual comfort’ (p. 130), should enable both religious and nonreligious people to find their own way through the journey of dying:

We must remember that we belong to the much wider community of the whole Church, to the whole communion of saints and, indeed, to the whole community of all men. It is because of this that St Christopher’s is ecumenical and undenominational. We will welcome people of all sorts and kinds and be of all sorts and kinds ourselves. We are not emphasising that there is just one way but rather that there is one Person coming in many ways. (p. 5) ²¹

Saunders acknowledged the many individual ways of coming to terms with one’s own death. It is well established that awareness, preparedness and acceptance of dying are key features of the hospice ideal, ¹¹ yet the practices informed by it are not fixed or standardised. Vibeke Graven and Helle Timm ⁷ have argued that ideals of a ‘good death’ in the context of modern hospices ‘are shaped by social and cultural elements as well as individual patient’s needs, beliefs, family background, and different ideas about dying’ (p. 334). Saunders’ own hospice ideal prioritises autonomy and choice over rigid principles and binding moral–religious frameworks in order to take account of religious change in modernity and the alleged uniqueness of each patient. As I elucidated earlier, the meaningful integration of a patient’s individual experiences of illness in the context of St Christopher’s is not realised through standardised social behaviours and authority but entails an ongoing process of self-understanding, self-transcendence, and self-discovery. Furthermore, I argue that these practices, which aim to discover sources of meaning and transcendence in the patient’s personality and the psychospiritual dimensions of life, are related to ideas and practices of alternative forms of culture and religion that spread in the postwar period in the West. Generally speaking, these new and eclectic forms of religion, as found in the broad variety of New Religious Movements, focus on the self, inner directed spirituality, and individual experience and react against the Western body–mind dualism.^15,42 The focus on the individual, though, can be found not only in New Age and its different forms of spirituality but is also characteristic of other social areas of life, such as medicine and consumer culture. A good example to elucidate this point further is Saunders’ concept of ‘total pain’. The holistic concept rejects a mechanical understanding of pain and attributes personal meaning to suffering, made accessible through narration and expression. It reflects the dissatisfaction with medical reductionism and the increasing attractiveness of holistic worldviews that diffused from counterculture into medicine and stress the unit of body, mind and spirit:

It soon became clear that each death was as individual as the life that preceded it and that the whole experience of that life was reflected in a patient’s dying. This led to the concept of ‘total pain’, which was presented as a complex of physical, emotional, social and spiritual elements. (p. 34) ²¹

Saunders became attentive to the phenomenon of total pain in the narrative episodes of her patients, which she assessed carefully. The famous foundation came from a woman who told her, ‘Well, doctor, the pain began in my back but now it seems that all of me is wrong’ (p. 4). ⁴² Saunders ⁴³ concluded from this story, in which the patient addressed both somatic symptoms as well as social issues, that pain cannot be reduced to a physical phenomenon and is linked with the broader life history of the patient: ‘Her pain included not only her physical suffering but also her emotional and mental suffering, her social problems and her spiritual need for understanding and security’ (p. 4). Whereas orthodox medical discourses on pain ‘encourage individuals to interpret pain as ‘meaningless’” (p. 168), ⁴⁴ Saunders attributed a deeper personal meaning to it, being alert to the zeitgeist. To further illuminate the idea that pain arises from the ongoing intertwining of emotional, physical, spiritual, and social aspects of life, she quoted psychiatrist and psychotherapist Milton M. Erickson: ‘The immediate pain is augmented by past pain and is enhanced by the future possibilities of pain’ (p. 13). ³³ This holistic understanding of pain, which for Saunders ²¹ is strongly tied to the idea that each person is ‘an indivisible entity, a physical and spiritual being’ (p. 35), is typical of the era of the 1960s and 1970s. In these decades, people became increasingly dissatisfied with the positivist domination of science and its reductionism. ⁴⁵ In contrast to scientific medicine, holistic approaches to health focus on the person as a unified whole and assume that diseases have ‘causes and dimensions beyond the purely biological’ (p. 142). ⁴⁶ Saunders introduced the concept of ‘total pain’ to draw attention to the psychospiritual dimensions of pain, which, according to this holistic understanding, cannot be reduced to a physical sensation and must be viewed in relation to the person as a whole. In this way, as Clark ⁴⁷ observed, ‘pain has become something indivisible from both the body and the wider personality’ (p. 733). To unlock the deeper meaning of pain, Saunders viewed the patients’ narratives and narrative episodes as emotional evidence of their end-of-life experiences, which provide a ‘convincing sense of the real not found in large data sets or trials’ (p. 4). ⁴⁸ Thereby, Saunders ‘urged clinicians to engage with the emotional complexity of terminal pain by attending to what a patient says’ (p. 2). ⁴⁸ The concept of total pain highlights two aspects that are fundamental to Saunders’ approach to hospice care, namely, the idea of the uniqueness of each person and its experience as a unity of somatic and psychospiritual elements and the interconnectedness of all things, which cannot be reduced to their material basis.

To summarise this section, I want to emphasise two things. First, Saunders’ focus on self-determination and freedom releases patients from the compulsion to follow standardised behaviour and rituals in dying. They are addressed and also recognised as unique beings with individual lifestyles and needs. In this way, Saunders offered an approach to death that is adapted to the requirements of modernity’s individualised consumer culture. Second, the intense individualism and holism of her care paradigm enables a way of interpreting suffering that avoids a Christian rhetoric of sin and evil. Instead of an identification with ‘higher powers’, existential concerns are given meaning through an interpretive vocabulary that relates suffering and pain to the patient’s individual story and personality. Saunders’ narrative holism functions as theodicy in the aforementioned sense by making pain and suffering intersubjectively accessible, allowing it to be regulated, managed, and transformed. Narration, but also art and photography, provide a means for patients to share inner states of pain and other end-of-life experiences. By integrating these experiences into the institutional universe of meaning of the modern hospice, the dying are provided with a pattern of interpretation to view themselves and the present situation in continuity with their own life and struggles. The aim of this integration is to allow them to go through the difficult situation and eventually experience catharsis by transforming the bleak situation into positive feelings.

Relational ethics and dividual personhood

To further comfort the dying, Saunders’ vision of hospice care builds on a relational ethics of care with associated nursing and medical practices. These practices further seek to avert the ever-present threat of loss of meaning when faced with the consequences of terminal illness. In this section, I illuminate the fundamental aspects and functions of the ethical values and practices maintained by Saunders. To support and protect individuals in the most difficult of situations, she developed the concept ‘watch with me’ alongside pain control. ‘Watch with me’ is an essential foundation stone of modern hospice care and was used to guide the care of patients at St Christopher’s hospice. ²¹ The concept combines compassion and physical presence with analytical observation in order to learn from a patient’s struggles and improve terminal care. The term watching, as used by Saunders, includes ethical as well as epistemological aspects. It means ‘warmth’, ‘friendship’, and ‘being there’, as well as ‘listening’, ‘learning’, ‘understanding’ and ‘competence’. ²¹ The concept’s ethical aspect, which lies at the heart of the care paradigm, is grounded in the idea that humans are inherently responsive and relational beings, a premise Saunders’ work shares with moral theories known as ethics of care. These theories, which developed from feminist thought, emphasise the importance of attentiveness, responsiveness, and emotional sensitivity to other people. ⁴⁹ As Michael Slote ⁴⁹ highlighted, in ethics of care the focus is ‘on the individual herself rather than on any abstract or general moral principles that someone might want to consult in order to determine how to act toward that individual’ (pp. 10–11). Similar to this idea, Saunders’ ideal of caring is based on compassion and respect for a patient’s particular situation and needs. Therefore, notwithstanding the aforementioned ideal that one should work through grief and anxiety in dying, she also accepted hedonism in the hospice and did not condemn it:

But who is to say who does the best – the person whose last weeks are the crown of a life of devotion, the young girl who makes the whole ward into a party for months on end and never shows you how much it costs her. (p. 4) ²¹

Respect for individual needs, attention, warmth, listening, and physical presence are a means to exhibit caring and to respond to the need for responsiveness in the individual patient–caregiver relationships. Moreover, the idea that humans are inherently responsive and relational beings also possessed a religious dimension for Saunders. The concept ‘watch with me’ reveals a Christian notion of the individual that actually can be described as a ‘dividual’. ⁵⁰ According to Douglas Davies, ⁵¹ ‘dividual personhood describes someone whose boundaries with others and the wider environment must be considered as selectively open for a variety of “flows” of materials, relations and the emotions that constitute personhood’ (p. 4). Applied to Saunders’ ²¹ religious ideal of caring, ‘dividual personhood’ means that patients are in an exchange relationship not only with their carers but also with Christ, who is present at the deathbed through the believer’s caring gaze:

The same words ‘Watch with me’ remind us also that we have not begun to see their meaning until we have some awareness of Christ’s presence both in the patient and in the watcher. We will remember his oneness with all sufferers, for that is true for all time whether they recognise it here or not. As we watch them we know that he has been here, that he still is here and that his presence is redemptive. (p. 5)

In Saunders’ Christian perspective, the bodily copresence of a devout caregiver and the patient is more than sheer physical presence; it reveals the divine presence of Christ, whose love speaks silently to all patients regardless of their worldview. ‘Watching’ as a metaphysical Christian concept of presence is a way of comforting the dying that values silence and nonrelationality equally as talking and listening and respects the inaccessible and the unknown. Saunders noted in this regard: ‘It also means a great deal that cannot be understood. Those words [watch with me, author’s note] did not mean “understand what is happening” when they were first spoken. Still less did they mean “explain” or “take away’’’ (p. 4). ²¹ ‘Watch with me’ as the guiding ethical principle of her approach to terminal care is a vital tool to comfort patients according to their situation and needs. The concept and its goal(s) is informed by the value of compassion as well as the belief in the autonomy and personal uniqueness of each person. It offers a means to alleviate negative emotions and feelings in dying along with the quest for meaning, spirituality, narration, expression, and holistic thinking. By and large, the constellation of practices, beliefs, and values found in Saunders’ approach to terminal care can be viewed as a structure of meaning in the sense of a worldview that had a life-orienting function for those persons who died at St Christopher’s hospice. The compound of scientific and cultural knowledge endorsed by Saunders forms a shelter to keep patients from falling into the abyss of despair and pain that might open up in the course of fatal illness.

Conclusion

Saunders’ revolutionary approach to modern hospice care, which is centred on the individual, its needs, and experiences, can be grasped against the background of the cultural climate of the 1960s and 1970s. The focus on the self, consumer culture, and the rise of alternative forms of spirituality and religion, which attracted mainly well-educated people in higher social classes, are salient cultural patterns absorbed in her care paradigm. On the whole, the approach reflects both medical advances and the shift of religious authority from the institution to the private sphere of the subject, which resulted in a valorisation of inner experience and the creation of a modern ‘sacred cosmos’, in which, according to Luckmann, ⁵² the dominant themes are autonomy, self-expression, and self-realisation. In the course of this development, traditional religious vocabularies were adapted to the secular requirements of modern civilisation ⁵² and fused with the culture of romantic inwardness and expressivity, which became mainstream in the 1960s. ³⁷ Luckmann ⁵² argues that modernity’s focus on the individual results in a lifelong quest for meaning:

The individual who is to find a source of ‘ultimate’ significance in the subjective dimension of his biography embarks upon a process of self-realisation and self-expression that is, perhaps, not continuous – since it is immersed in the recurrent routines of everyday life – but certainly interminable. (p. 110)

The analysis carried out in this essay shows that the process of discovering personal sources of meaning and transcendence in the subject and its biography is fundamental to Saunders’ care paradigm. This process is supported by up-to-date pain control and the Christian notion of dividual personhood that accounts for human’s need for responsiveness and shared vulnerability in dying. In the social and cultural context of the modern hospice, the process of dying becomes a ‘journey of the self’ (p. 58) ¹⁰ instead of a collective affair facilitated by shared beliefs and rituals. This journey has to be undertaken by the patients as an individual endeavour according to their lifestyle and needs. Although Saunders’ care paradigm fosters personal ways of coming to terms with death, her holistic thinking nevertheless offers an institutionally legitimised meaning scheme to make suffering intelligible and valid as a part of life. According to Berger and Luckmann, ²² the nomic function(s) of symbolic universes is that ‘it puts everything in its right place’ (p. 116). Saunders’ own medical holism clearly has such a function by integrating pain into the patient’s wider personality and assigning it its ‘right place’ there.

Saunders’ vision of modern hospice care can be seen as an edifice of subjective involvements and the experiences of a particular generation. Created under the personal impression of the shortcomings of the medicalisation and sequestration of death, Saunders created a distinctive approach to death that responded to the cultural and religious changes in the postwar period, yet without releasing death from its traditional religious authority. The legacy of this paradigm is reflected in a considerable amount of palliative care literature and the assumption that all human beings have a spiritual dimension. ³⁴ Another culturally perpetuated idea alongside the strong focus on spirituality in palliative care contexts is the meta-narrative of individualism, which Saunders introduced into hospice care and that continues to have a strong influence on the way dying and death are managed in current Western societies. Individualism, as Lisbeth Thoresen ³ argues, ‘is a main feature, not only in modernity, but also in hospice philosophy’ (p. 20).

This essay took as one of its main premises Berger’s ²⁷ claim that it is essential for humans that their experiences ‘have a place within a universe that makes sense’ (p. 94) and demonstrated that Saunders’ vision of hospice care offers such a universe for individuals to cope with existential suffering in dying. In pluralistic and culturally fragmented societies, however, there exists no overarching symbolic universe in which all people are socialised and which provides a collectively shared means for mastering life and hardship. Hence, there can be no ideal model for dying under the cultural conditions of (late) modernity. With regard to the development of current and future models of hospice and palliative care delivery, the question should therefore be asked: For which social classes and groups are the available practices and therapeutic interventions to deal with end-of-life issues appropriate and meaningful? For whom are they not?