The Existential Dimension of Palliative Care: The Mirror Effect of Death on Life

Abstract

The WHO has included the spiritual dimension in its definition of palliative care since 1990, but this dimension is frequently confused with notions of religion. Yet, the spiritual suffering experienced by palliative care patients is primarily a matter of existential suffering. The objective of this study was to examine the ways in which the existential dimension was manifested in the experiences of those present in a palliative care unit. This anthropological monograph was conducted in a palliative care unit in a French University Hospital. The existential dimension appears to reside in the connections between individuals and the proximity of death appears to shed new light on the meaning of life. The mirror effect of death on life, could serve to encourage greater appreciation of the value of our connections with others, and the desire to take care of others, which offers new insight into forms of solidarity and social organisation.

Keywords

end of life existential dimension palliative care spirituality terminal disease

Palliative care is a major societal issue and represents a source of innovation within the dominant biotechnological model. A central plank of this approach is the concept of “total pain,” which includes spiritual pain account along with physical, psychological and social pain (Cicely Saunders, London, 1967). Committed to the fundamental principle of “taking care,” palliative care (PC) considers patients in their entirety; by extension, it raises the questions as to why other forms of care do not. In the face of incurable illnesses, PC services tailor their support in order to best relieve patients and their loved one (Burucoa, 2015). Despite the fact that the WHO has included the spiritual dimension in its definition of PC since 1990, in secular countries such as France this dimension is frequently confused with notion of religion, which hinders its institutional accompaniment. The prevailing biotechnological model, imbued with a certain modernist idealism (Chatel, 2013), prefers to keep science at a safe distance from anything remotely associated with religion or matters beyond our control. Thus, the presence of chaplaincies in French hospitals would be tantamount to considering that this accompaniment could only be carried out by religious representatives and would only concern people of faith. However, our explorative study carried out in a French Palliative Care Unit (PCU) revealed a different reality.

Research Background

Concerning the spiritual care in PC, an international online survey (Selman et al., 2014) indicate that clinicians/researchers need for more research. Although the distinction between religion and spirituality seems to be clear to many international researchers working on this topic, confusion can still persist between spirituality and religion (Yennurajalingam & Bruera, 2016): is this due to the ambiguity of the term spirituality, to a lack of training for professionals, or to the absence of concrete tools for the implementation of spiritual support…? An Australian qualitative study (O’callaghan et al., 2019) demonstrate that patients affected by advanced illnesses and caregivers have divergent and contested views about the concept of spiritual care, however, staff qualities and hospital’s hospitality were identified as important for enabling participants’ overall sense of spiritual well-being or general well-being. The “biomedical appropriation” of spiritual care is a recent phenomenon (Jobin, 2016), in Canada (Doucet, 2015) as in Switzerland (Rochat et al., 2015), people are specifically trained in “spiritual care”, in Belgium was recently created the Health, Care and Spiritualities Network (RESSPIR). An American article (Balducci, 2019) explore the interactions of spirituality and PC in the management of cancer of the older aged person and argue the benefices of a spiritual perspective in such care. Nevertheless, questions remain because a distortion exists between the human dimension of this accompaniment and the medical normativities (Pujol, 2015) and such care cannot be subject to strict evidence-based criteria (Puchalski, 2008). In Europe active research in this field is being carried out like in Netherlands (Van de geer et al., 2016) where there is not PCU but PC is delivered by healthcare professionals in general departments, and is based on multidisciplinary guidelines supported by PC consultation teams who include spiritual care but training still lacks. The European Association for Palliative Care (EAPC) launched in 2011 a Spiritual Care Taskforce and a systematic review on the recent studies on spiritual care in PC in Europe (Gijsberts et al., 2019) show that definitions of spirituality often include elements such as meaning and significant relationships. The findings also suggest that spiritual care (like creative, narrative, and ritual work) has positive effects on patients, nevertheless, the evidence is low.

Anthropological studies offer some insight into the phenomenon, suggesting that the support on offer for so-called spiritual suffering is still somewhat misunderstood in the context of end of life care. In Switzerland (Foley, 2006) patients and caregivers rarely talk about spiritual care, Indeed, it is the medical approaches somatic and psychological factors that prevail in the speeches. In France (Caudullo et al., 2016) the study gives an account of the difficulty of setting up a spiritual care unit in an university hospital in a secular context, underlining the fact that the regulation of this care does not depend solely on the medical world. Nonetheless, a general consensus has emerged in the health professional francophone literature to connect the notions of the search for meaning and the need for recognition to the spiritual. This can be translated, among other things, by a reflection on the meaning of the illness, the meaning of life (Echard, 2006); by a re-reading of one's life which revolves around a redefinition of the relationship with time (Raoul & Rougeron, 2007); by the caretaker/cared-for relationship and the accompaniment of questioning about the meaning of existence (Honoré, 2011), the importance of an authentic relationship to accompany this process (Abraham, 2015); by the patient's need to be recognized as a person and not as a sick (Pujol et al., 2016); by a “full presence” on the part of the caregivers (Goethals, 2017). A multi-disciplinary qualitative study conducted in Quebec focused on the existential suffering experienced by patients with serious illnesses (Blondeau et al., 2013). The results reveal a crisis situation experienced by the patient, leading to a process of existential examination described as “hyper-questioning” and encourages us to accept the reality of this existential dimension (ED). The authors of this article also note that this type of suffering appears to receive little consideration in PC. And yet this is precisely where more support is needed.

Upstream of our exploratory study, a French anthropological research (Drillaud, 2016) concludes that, far from being consigned to the religious domain, the spiritual suffering experienced by PC patients is primarily a matter of existential suffering. The purpose of this research was to understand what the various professionals and volunteers working in the field understood by the notion of support for spiritual suffering in PC. A participative, multi-disciplinary survey was performed, including filmed, cross-supervised individual interviews.¹ The author also spent a two-year observation period providing voluntary end of life support in medical institutions and patients’ homes. This experience confirmed the intuition that “existential suffering” was the most accurate term available to describe the observations made in the field. What might formerly have been called spiritual suffering actually appears to be more a form of existential suffering, provoking a profound sense of imbalance in patients. These terminal patients are in search of meaning, reflecting upon their lives and the proximity of death. This reflexivity often takes the form of patients telling their life story, with person as witnesses. Patients may feel a pressing need for recognition as a person, and not as a patient. This recognition must come from themselves as well as from others. The questions frequently evoked by patients nearing the end of their lives generally have more to do with their relationships with others—personal relationships and the achievements of their lives—than with their relationship to any transcendental force. It is not uncommon for this reflexivity to lead to an awareness of the importance of the relationship with the other. Moreover, the ambivalence that existed between religion and spirituality seemed to be nested behind the notion of a search for meaning. If this search for meaning were focused on the potential for life after death, it would indeed be difficult to approach the matter without taking religious beliefs into account. On the other hand, as corroborated by regular observations in the field, when this search for meaning is in fact focused on the events of the patient’s own lifetime then the issue is quite different. What such patients are seeking to understand is the meaning to be attributed to their life, defined by their relationship to others. As sociologist Patrick Baudry (1999, 2013) points out in his remarks²: “It is perhaps the first movement that see in the spiritual dimension, a dimension of belief, a religious dimension. I think it is something else, something else that the religious can be involved in, but the religious does not necessarily have a monopoly on spirituality. Basically, for me, what is at stake is the question of meaning. So, obviously, we can very well say that religions are taking charge of something in this matter of meaning. For example, we will say that religion is concerned with giving meaning to death, by explaining for example that it is not the end of everything, that there is another life, perhaps another world, etc. But this question of meaning, even if it is indeed a question of being in a relationship with death, touches in fact on the very existence, and let us say on the issue of social relationships that build relations between the living.” Building upon this anthropological research our study was conducted in a French PCU. The objective of this study was to examine the ways in which the ED was manifested in the context of advanced palliative³ care and in the experiences of those present in a PCU in order to clarify its expression.

Methods

This explorative study, christened DIMEX,⁴ was conducted at the PCU of Bordeaux University Hospital (CHU) during the month of December 2017. In order to ensure its smooth running, a multi-disciplinary steering committee was formed comprising two doctors, an anthropologist, a dietician, a social assistant, a healthcare executive and a psychologist. The observer who led the study is herself an anthropologist. A monograph appeared to be the most pertinent anthropological format for a study of this nature. Based on an inductive and interpretative approach (Geertz, 1973/2003), the idea was to employ a qualitative methodology leaving ample room for observation, gathering the viewpoints of those involved in the field, focusing in their interactions (Strauss, 1992) prioritising their accounts in an attempt to comprehend the meaning they attach to the situations they encounter, in a spirit of understanding in keeping with the sensitive context (Verdier, 1979). To this end, the author immersed herself for a month in the PCU integrated by the various members of the team who were informed in advance of the reason for her presence. For observation purposes, she often based herself in the space known as the “Nurses’ Office,” a busy location which hosts the care team’s handover meetings as well as countless informal conversations, and the place where staff go to find the information they need. The ‘Office’ is also centrally-located and entirely open to the adjacent corridor, providing much material for further observation. The author was thus able to observe various types of meetings (handovers, meetings on how to support patients’ loved ones, meetings between professionals from different branches etc.). She also observed various members of the medical team as they went about their duties, with the consent of the patients themselves and their doctors. She was also able to observe many of the informal moments which are an important feature of life in this unit, for patients as well as those working to support them (improvised parties, birthdays, Christmas celebrations etc.). In addition, fifteen individual interviews were conducted with eleven professionals, two volunteers, one patient and one relative of another patient. The interviews were semi-structured, seeking to gather the subjects’ experiences and points of view. To this end, biographical questions were interspersed with questions regarding the object of this study. The author would begin by explaining the nature of the interview and informing participants of the purpose of her research. The professionals and volunteers were invited to introduce themselves and explain what drove them to choose this profession or voluntary position, as well as describing the nature of their work. They were then asked how, in their opinion, the “existential/spiritual” dimension was manifested in the context of advanced palliative care. The patient and patient’s relative were also asked to share their opinions on the subject, after being asked to introduce themselves and to describe, if they so wished, the purpose of their presence on this ward. These interviews, conducted in an atmosphere of trust governed by anthropological ethics, were recorded with the consent of the participants. Each interview lasted, on average, one hour. The interview with the patient was conducted in several instalments, in light of him condition.

This exploratory study did not require authorizations from the CNIL⁵ or the CPP.⁶ The resulting data was processed with respect for the General Data Protection Regulation (GDPR⁷). All interviews were anonymised and transcribed word-for-word by the interviewer. This process yielded more than 150 pages of text for us to sort and code. A grid was used to break down the data into different thematic components, constructed in an inductive approach by the steering committee with the author's field report, a rapid reading of the interviews, the combined expertise of the committee in this field and the cross-compiling data from the existing literature. The fifteen interviews were then randomly distributed between four members of the committee, who were asked to identify and note the different components contained in the analytical grid. The anthropologist read all of the interviews in their entirety, and was able to compare the various analytical grids. For the vast majority of observations, both readers assigned to read an interview identified the same items. In cases where opinions differed, she reached out to the reader in question to discuss the categorisation of the item in question. The author also identified a number of items which had not been picked up by the other readers. The analytical grid was also used by the author herself to review her own ethnographic field notes.

Results

The Overall Results (Figure 1)

These results include 664 data points, 140 field ethnographic observations sequences and 524 items derived from interviews. They mostly represent the PCU team members’ perspective, thirteen of the fifteen people interviewed were members of this team. The items linked to “the search for meaning” and “recognition” are frequent and significant, while the “beliefs” theme (which includes the religious domain) appears relatively rarely in the field observations. The “feelings” theme appears to be non-existent, whereas “imagination” and “sensoriality” are well represented in Figure 1.

Figure 1.

664 data points (524 items derived from interviews and 140 field observations).

Interview Results (Figure 2)

The major themes of the ED are clearly present in the interview data in Figure 2. The themes of quest for meaning and recognition are also of central importance in their testimonies. Through these notions, it is a question of recognising the singularity of the individual through the credit given to him or her by another person, which is common, for example, when carers listen to patients' life stories or when the palliative team recognizes the importance and the specificity of each of its members.

Figure 2.

524 items derived from interviews.

In their view, the ED can encompass: “Meeting other people—Conviviality—Taking stock of life—The body—Little moments of pleasure—The imagination—The connections you make—Taking care of the orchids and the goldfish gets the patients out of their rooms—Parties—Laughs and tears—Pleasure—Meal times—The difficulty of making sense of this period before death … ”.

It might also simply be a matter of presence: “The therapeutic aspect of our work, the care, comes from the relationships we form. That means being fully present and available for another person, and when you have that, sometimes just doing nothing is enough.”

It is interesting to note that seven professionals spoke about “shock—trauma—terrible pain—feelings of guilt—being helpless … ” after the death of a loved one before their involvement in the palliative process. PC seems to be a source of meaning and recognition for the PCU team members. All of the staff interviewed made it clear that their career choice was no coincidence: “It’s not just any old job.”, “The recognition you get from the families and patients is very rewarding.”, “I felt like I’d discovered my job the way I wanted it to be. Patients first, with the priority on finding the right care for them, not the standard hospital routine. It’s a more humane approach.”, “What I like about palliative care is the comprehensive approach, taking the time to really focus on the person rather than the illness. The fact that nobody is expected to get better is not a problem.”, “It’s about meeting people in the team who inspire you to get moving, to be creative.”, “It’s a state of mind.”.

These professionals find it hard to imagine themselves working outside of PCU, an environment where support is of central importance and medical staff “work with patients, not for them.” They fear that, if they were to work in a different department, they would miss the experience of working in a interprofessional team where much reflection is devoted to the meaning of their actions, where the human dimension of patient support is prioritised, where shared values and strong relationships are key, and where they frequently find themselves concurring that: “These are life lessons.” In PCU it's a real exchange that takes place within the companion/accompanion relationship. The relationship with the other becomes central for both the patient and the person accompanying him/her. The fear they testify to is often based on past experiences in other services where time is short, the sick person is reduced to their illness and interactions between people lose their humanity. Nonetheless, six out of the eleven professionals complained of time pressures which prevented them from doing their jobs in the best possible conditions. In particular, they bear witness to the hospital system whose standards are becoming increasingly binding, often going against what they call “the palliative approach” focus on human dimension. They complain of technical gestures that are more and more present to the detriment of relational time with sick people.

The PCU team members note that the proximity of death, come the patients to realise what really matters in life, and what gives meaning to their own past, and it's often the connection to the other that's emphasized. One nursing assistant said: “Those people who are able to look in the rear-view mirror and say ‘I’ve had a good life,’ that feeling that they lived to the full, that they accomplished enough to be able to say ‘I’ve had a good life, I enjoyed it,’ seem to suffer less when faced with the inevitability of death.”

The “beliefs” theme does not crop up very often in the interview transcripts. A patient's relative reported that they considered themselves to be a believer, but also felt torn between Catholicism and Buddhism. The respondent expressed a sense of connection to Asia: “Over there they live with death, but not in an unhealthy way. They don’t forget their dead, they make them part of their lives, instead of saying ‘It’ll pass.’ At times like this you need to hold onto positive things.” The respondent also insisted on the importance of family and friends, asserting that “feeling loved is the most fundamental thing,” and adding that “having that connection to others makes it easier to pass on.” One doctor also declared herself to be religiously-minded: “Religion is really important to me, and I think I see everything from that religious perspective, which helps me make sense of things.” The catholic chaplain reported that he felt more like a partner than a full member of the PC team, whereas the volunteer reported feeling fully integrated with the team. The chaplain noted a decrease in the demand for religious accompaniment, which he says could be due to the presence of volunteer support workers. He expressed about the traits shared by all patients approaching the end of their lives, namely that “people want to pass on in peace with themselves and their family.” He concluded the interview by sharing some advice given to him by a fellow priest who had spent time in Mosul, Iraq: “It’s not so much religion that we should speak about, but humanity.” The patient we interviewed simply noted that: “We don’t get much support with those kinds of questions.” Although the patient self-identified as a believer, he did not express any particular interest in the support offered by the chaplaincy. He was more concerned with family regrets and concerns for the future of him relatives than with him impending death, which he claimed to have accepted.

Observations Results (Figure 3)

In our ethnographic observations the “beliefs” theme is very rarely observed (see Figure 3). The two main themes identified are also “the quest for meaning” and “recognition” who appears in the connection between individuals. Indeed, on a verbal level, we noted the practice of always addressing the patient by name and always announcing each movement before performing it, even if the patient appeared unconscious (though never in a condescending manner), the importance of humour, and the general sense of respect for the other as a living person. On the non-verbal level we observed looks, smiles, affectionate contact, massages, body language (PC personnel who take the time to sit down with patients) and various other attentive gestures towards persons. A sense of reciprocity was also observed. For example, after a nurse and a nursing assistant had helped to move a patient from his bed to a chair, changed his bedsheets and put on his socks and slippers, all with the utmost care, the patient exclaimed “Now I’m a happy man!” Another example comes from an informal conversation in the corridor between the wife of a patient and a doctor. The woman in question was with her husband at night, and noticed that every night a nursing would pass by and greet her with a little wave. She said “It may seem like nothing, but it means a lot to me.”

Figure 3.

140 field observations.

The members of the team demonstrate great imagination, without being asked. Several of the events observed were spontaneous, and the sense of consideration for others was palpable. Examples of this spirit in action include a spontaneous duet sung by a nurse and a nursing assistant, an aperitif organised in a patient’s room and the distribution of personalised Christmas presents based on the information gleaned from each patient. It also extends to taking care of the environment, decorating the rooms and using medical equipment which is not invasive, where possible. Particular attention is devoted to the preparation and presentation of meals. A wine cellar was installed for the patients, for friendly and festive occasions.

The ED is also expressed physically, with regular massages or touch massages by the nurses, the psychomotor therapist and the physiotherapist. A therapeutic bath administered by the psychomotor therapist and the physiotherapist to a totally paralysed patient who was breathing with the help of an oxygen mask turned into a dance trio to the tune of Cesaria Evora. The patient's body was suddenly “reanimated”, and many looks and smiles were exchanged between these three people working in harmony.

The commitment of “taking care” continues during the post-mortem care: speaking to the deceased as if they were still alive, listening to the patient’s favourite music while going about their work with tenderness and take care to prepare the deceased's room and body as well as possible in order to take care of his loved ones.

The family and friends present on the ward also express their gratitude in personalised ways. The husband of one patient prepared a Savoy fondue, his wife’s favourite meal, in order to share it with the medical team by way of thanks. Many families send messages of thanks and encouragement to the team following the passing of their loved ones, including donations to the charitable fund which finances the creative aspects of the PC which are not covered by the hospital budget. Patients are quick to express their gratitude to their carers, who are impeccably courteous as they go about their work. For example, when a patient thanks a medical professional for their work they often reply “my pleasure!”

Discussion

The two methods used to gather data—observations and interviews—seem complimentary and appropriate. The originality of this study was to consider patients, relatives, professionals and volunteers. Although only one patient and one relative were interviewed, ethnographic observations coupled with the professionals' narratives of their experiences made it possible to consider others people. The analytical grid proved to be useful in singling out the main components of the ED, but its limitations also became rapidly apparent. It does not allow for a more subtle understanding of these phenomena, and runs the risk of instrumentalizing the results obtained. It is important to note that it is not the purpose of this study to attempt to quantify the ED, nor to reduce it to a number of fixed components, but rather to provide a platform on which future research can build.

The results of our study confirm what has emerged from the systematic review on the recent studies on spiritual care in PC in Europe done by Gijsberts et al. (2019). It does indeed include elements such as meaning and significant relationships. These elements are evident in the two main themes “the search for meaning” and “recognition”, themes who are closely related because persons want to be recognized in the meaning they give to their life. It is noteworthy that the “beliefs” theme is rarely found in the data. However, this theme may be hidden in the field and yet present. The “feelings” theme seems to be transversal, an inherent feature of all of the other themes, as a result of the high stakes environment, which may explain why it is not very present in the data. The work of doctor-philosopher Véronique Avérous (2019) provides a good example, examining feelings of shame and dignity and their close connection to the phenomena we have defined as “search for meaning” and “recognition”. The themes of “sensoriality” and “imagination” expressed in this study deserve to be studied as existential elements given their prominence in the field and the lack of corresponding theoretical data.

The Importance of “Nothing” and Imagination

The ED appears to reside in the connections between individuals, the relationships and interaction of all those present in the PCU. Sometimes this dimension is hard to grasp, but it is clearly felt in the field. It is manifested in the “little things,” those small moments of life which seem unimportant but are actually highly significant. They are part of what anthropologist Françoise Héritier (2012) calls the “salt of life.” On a PC ward, this often means small everyday gestures, signs of consideration for others, ultimately conveying the message that: “You exist, I see you.” This is very similar to hospitality as a source of spiritual well-being, which is discussed in O’callaghan et al. (2019).

These gestures may appear banal or insignificant, but that would be to misunderstand the reality of the situation. One medical professional explains it in the following terms. “It’s hard to explain. What are you doing with that woman? Nothing, but sometimes this nothing is necessary … Sometimes, it makes sense. Meeting, it’s being there, doing nothing, just simply being there with the other person, even if we don’t talk.”.

L'essentiel dans le Presque rien⁸ (Denizeau, 2013), co-authored by researchers in humanities and the social sciences, provides a fine illustration of the power of these “small things.” Many of the observations in the field reflect the imaginative dimension of the PCU team.

Such extreme situations seem to stimulate creative thinking, and the very existence of PC is a case in point. The work of art-therapist Carol Duflot (2016) is also highly instructive: based on her fifteen years of experience in a PCU, she champions the benefits of creativity for patients, unleashing the imagination to encourage self-expression.

Supporting the ED is largely informal, much of what we might define as existential support operates on a non-verbal level and through physical contact. Psycho-physical techniques such as “touch massages” can be considered as a source of spiritual well-being for patients (Bollondy-Pauly & Boegli, 2016). Our relationship to the body and to sensoriality appear to be inextricably linked with the ED.

The commitment of “taking care” does not end when a patient’s heart stops beating.

Observing the “post-mortem care”, it became clear that in addition to the necessary technical procedures the professionals in question performed symbolic gestures out of respect for the individuality of the patient and their loved ones, whom they had supported throughout the patient’s final days. The hospital room thus became the scene for a ritualised preparation which, through words and gestures, appeared to symbolise the patient’s transition from presence to absence, from visible to invisible. In the material tasks of preparing the body and the room they occupied, we see the emergence of an imagined spatial configuration centred on the deceased and their loved ones. In seeking to understand the ED it is important to devote more attention to the seemingly elusive. It is interesting to consider what philosopher François Jullien (2011/2015) calls the “between of life,” with “between” representing that which eludes life, the interstitial which is neither one thing nor the other, yet which appears to be the source of our inspiration, the fact that the goal is not the end. Drawing on his experience as a sinologist, François Jullien examines the fundamental questions of life, being and the unconscious with input from Chinese philosophy.

From “Narrative Identity” to Recognition

Professionals did not fail to note that patients approaching death have a reflexive dimension on their lives and that they need to share their life stories, which confirms what was perceived in the field of anthropological research (Drillaud, 2016) carried out prior to this study. We think that the preoccupation of terminal patients with reflecting on their lives presents a striking parallel with what philosopher Paul Ricœur (2000) calls the “historical condition”. Ricœur uses this phrase to refer to the phenomenon of experiencing time—past, present and future—and expressing the different modes of consciousness time entails. The PC context also provides an (inverted) example of the modus operandi identified by sociologists Michael Pollak and Nathalie Heinich (1986) in individuals who have lived through extreme experiences.⁹ This modus operandi is inverted because death itself is the extreme experience, and it is in the future not the past. The process, however, remains the same: a trauma which operates a radical break with the individual’s regular life, an extreme experience which casts doubt upon their own permanence. This experience may elicit many forms of expression from the individual. These different modes of expression are a way of staking out a place in social life, ensuring a certain permanence of identity through the recognition of another person who bears witness. In the context of terminal illness, those providing support and care often act as witnesses to patients. The recognition sought by the latter often takes the form of listening to their life story. Through telling this story, PC patients work to achieve a degree of permanence by passing on what Ricœur calls their “narrative identity.” For Ricœur, memory is the matrix of history and both stem from the same root: storytelling. This practice implies a mode of self-consciousness which consecrates our individual identity. In recent years, hospital-employed biographers have been present in some PC units, establishing a new type of support service (Joly & Dewulf, 2017; Milewski & Rinck, 2014). The therapeutic benefits of biographical storytelling have already been explored in the literature, particularly in “psychological interventions focused on spirituality” (Bernard et al., 2017) and in the Canadian collective book Vérité de soi et quête de sens. Le récit de vie dans la relation de soin¹⁰ (Quintin, 2014) floats the idea that narrating one’s life story can help us to address questions connected to the meaning of life. Indeed, the back cover of the book asks a pertinent question: “Is it possible to establish relations of care without taking life stories into account?” (Quintin, 2014).

Patients in PCU frequently express a need to be recognised as individual beings in their own right, not simply the recipients of medical treatment, in the same way that medical personnel would not like to be reduced to their administrative code and status. As with the patients themselves, the notion of recognition proved to be of central importance to the medical team. The ample place afforded to biographical narrative in the interview structure served to bring this phenomenon to the fore. Respondents were given time to reflect upon their own careers, and several reported feeling that this reflection had helped them to make sense of their career paths. They attested to the importance of being recognised within their department, by the patients, their loved ones and the fellow members of the medical team. They also reported appreciating the feeling of recognition they got as the interviewer herself acted as witness to their own “narrative identity.”

The Mirror Effect of Death on Life, and the Idea of “Taking Care”

The proximity of death appears to shed new light on the meaning of life and the richness of connections with other people, both for terminal patients and those working with them, which underscores our interdependence. Indeed, our study highlighted the fact that the companions were not exempt from what we will call the mirror effect of death on life, a form of transmission, a reflection whose content changes the observer. Is it because they are accompanying people who are experiencing it? Indeed, a person’s final days are inevitably a strange time, since death has not yet arrived, but the patient has made the transition from uncertainty as to when death will “come for them” (although we all know that it is inevitable) to certainty that the end is nigh. That knowledge is now a pressing reality, and one that the patient has time to experience and contemplate. Medical personnel and support staff are thus sharing in the final moments of a person’s life, a time when existential questions are likely to be more present than ever. The quest for meaning becomes a pressing reality at times like this. Medical personnel report that impending death can lead to realisations about what patients truly value in their lives (Kubler-Ross & Kessler, 2002). Death leads to questions about the value of life, a profound examination of existence. This process of reflection often focus people approaching the end of life to realise the importance of their relationships with others (Borasio, 2014). Those accompanying terminal patients also feel the benefit of reflecting upon their own lives. Anthropologist Yannis Papadaniel (2013) talks of the “beauty of death,” describing the ways in which a number of volunteer patient support workers in Switzerland learned lessons about their own life from their work: “Dying patients (or some of them) are perceived by the volunteers, in the context of their palliative mission, as potential ‘charismatic masters.’ Their proximity to the end of life is believed to give them privileged access to the ‘essential,’ prompting to focus only on that which is of ‘true’ value. Through their interactions with such ‘masters,” support workers are thus liable to learn lessons applicable to their own lives.” (:30) The present exploratory study seems to corroborate this phenomenon of “give and take” between patients and professionals. Philosopher Frédéric Worms (2010) describes such encounters as an experience whereby two people arrive at themselves. He asserts that the example of PC highlights the crucial importance of care in our lives, but also in our society as a whole. As sociologists Louis-Vincent Thomas (1975) and Patrick Baudry (1999, 2013) make clear, death represents a point of intersection between the individual and the collective, and thus raises important questions about the individual and collective dimensions of society that are interdependent and mutually nourishing. Patrick Baudry asks a pointed question: “When we consider the end of life to be the final question which needs answering (“Yes, you really will die soon”), do we realise that it is not the same thing as a bank account which is running low?” (2013, p. 31).

Care is a strategic concept conducive to closer examination of this cohabitation. Political scientist Joan Tronto (1993/2009) breaks care down into four constituent phases: attention, responsibility, competence and capacity to respond. Together these four phases comprise an ethical grammar of the act of care. Ethicist Carlo Leget proposes considering the ethics of care as an inter-disciplinary field of enquiry, incorporating both empirical research and theoretical reflection (see Leget et al., 2017). In his view, care practices are an important source of meaning in life and the ethics of care could provide a useful starting point from which to analyse questions of meaning from a collective perspective.

The complicated history that some professionals have with death also raises questions. Indeed, it seems that it is being repaired through their practice as caregivers: Would this complex relationship qualify as an extreme experience as defined by Michael Pollack? Are the professionals in question seeking to ensure the permanence of their own identity through the recognition received from patients and their loved ones, who in turn act as witnesses? Is this experience expressed in the form of care for others, a mark of one’s integration into social life? Could this learning process help us achieve a better understanding of the notion of ‘taking care’?

Questions which serve to underline the need for further investigation of the mirror effect of death on life, and its didactic implications.

The semantic distinction between spiritual and existential has yet to be resolved in the PC community. We might be tempted to draw a parallel with the notion of boundary object, a sociological concept associated with the symbolic interactionism championed by the Chicago school (Trompette & Vinck, 2009). A boundary object is a physical or abstract object—it may be a concept—which facilitates communication between different actors in pursuit of a shared objective. Boundary objects are employed in fields where knowledge is not yet rigidly stabilised, ensuring that the varying definitions adopted by the different actors are taken into consideration. In this particular situation, we prefer the term “existential dimension.” We could have chosen to use the term “spiritual” or “ethical,” but we opted for “existential” based on our observations in the field of PC.

In order to help the development of palliative culture and services and the transformation of representations of death and end of life care, further research into the ED within palliative situations is necessary. The stakes are high in terms of the support provided to patients, the recognition due to healthcare professionals, and the need for more research and education focusing on end of life care. This study appears to confirm the pertinence of interdisciplinarity and using qualitative methods, combining observations and interviews over a long period of time. As the ED is expressed verbally as well as non-verbally, these two methods of data gathering are perfectly complementary in this context. Video could be a very useful tool for visualising and listening to exchanges, capturing the subtle nuances of interactions in PCUs. Moreover, it would be interesting to expand this research to other PC contexts in order to capitalise on the latest international breakthroughs in the field.

The members of the medical team must deal with a certain amount of suffering themselves, particularly when unable to do their jobs to the best of their abilities due to lack of time. In order to provide quality care, this dimension needs to be taken into consideration for all involved. Connections between individuals are of central importance: it is more difficult to make the act of care humane when the person providing the care is also suffering. The PC movement has taken this into consideration since its inception, highlighting the importance of combined support for patients and their loved ones. On the other hand, this mission does not include in their global approach, the consideration of the suffering of accompanying professionals, although it is a highly topical subject.

The ED also serves to reveal the mirror effect of death on life, which allows the persons concerned, whether at the end of life or not, to take stock of what really matters in their own lives. Thus, there is something to be learned from the lesson of death in relation to the living, wich didactic implications which could serve to encourage greater appreciation of the value of our connections with others, and the desire to take care of others. Given due consideration in the interests of improving the conditions of care for people approaching the end of their lives, the ED offers new insight into forms of solidarity and social organisation. In the context of ours ailing societies, these questions are surely worthy of closer examination.

Footnotes

Acknowledgments

The authors thank the team of the support and palliative medicine service of the Bordeaux Universitary Hospital.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the research fund of the service of accompaniment and palliative medicine (DRCI - Bordeaux Hospital University).

ORCID iD

Frédérique Drillaud

Notes

Author Biographies

Frédérique Drillaud is a study investigator in Universitary Hospital, Bordeaux, France.

Camille Saussac, MD, Universitary Hospital, Bordeaux, France.

Florence Keusch is a social worker in Universitary Hospital, Bordeaux, France.

Danièle Lafaye is head nurse in Universitary Hospital, Bordeaux, France.

Hélène Bely is a dietician in Universitary Hospital, Bordeaux, France.

Véronique Averous, MD, PhD, Universitary Hospital, Bordeaux, France.

Matthieu Frasca , MD, Universitary Hospital, Bordeaux, France.

Patrick Baudry , PhD, professor of sociology, University Bordeaux Montaigne, Pessac, France.

Benoît Burucoa is an associate professor, Universitary Hospital, Bordeaux, France.

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