HOSPICE, HOSPITALITY AND THEIR MEANINGS FOR THE HOSPICE MOVEMENT

The root of the word ‘hospice’ dates back many centuries. Derived from the Latin hospes, which initially meant ‘host’, subsequently with the Christian use of the term, in the Fourth Century, it also came to mean “a stranger” (Goldin, Reference Goldin1981). Goldin describes that in Cícero, a hospes was a host who happily welcomed the advena (someone who arrives at his home) and the peregrinus, “the wanderer or pilgrim”, and that from ‘hospes’ comes the word hospitalis, which means “guest”, “hospitable” and “the feeling that the hospes had for the advena and the peregrinus” (Goldin, Reference Goldin1981, p. 386). Hospitalis, meanwhile, originated the noun hospitalitas, the translation of which is ‘hospitality’, but also the condition of stranger (Dicionário, 2001) and – also according to Goldin – “in the word that gave us ‘hospitality’, we have the root of words used today: hospital, hostel, hostelry, hotel and hospice” (Goldin, Reference Goldin1981, p. 386).

Another noun derived from hospitalis is hospitium, which means a warm feeling between the one who offers hospitality and the one who receives it – between the host and the guest – and that, as time went by, also acquired the meaning of the place where such feeling was firmly expressed by the host upon receiving that guest (Goldin, Reference Goldin1981). Hospitium – in Cicero – is a polysemous term, as it means accommodation, lodging, the right of hospitality and the reciprocal pact of sheltering one another, as well as meaning the relations of hospitality, refuge, and den for animals. According to Virgílio, Hospitus, hospita, hospitum is an adjective used to indicate the wanderer, one who is accommodated, and hospitaculum, in Ulpianus, refers to the asylum, inn, lodging-house. (Souza, Reference Souza1957).

Furthermore, in the Greek equivalent of hospitium, xenodochium, there is the same duplicity as in the Latin root of the term: xenos means both host and stranger (Goldin, Reference Goldin1981) and, in some places, hospices are also called xenodochium (Piasek & Piasek, Reference Piasek and Piasek2006).

The importance of “hospitality” to the hospice movement is demonstrated by Cicely Saunders, the founder of the modern hospice movement, in a text published in the 1970s, while travelling around the United States to promote the work of St. Christopher's Hospice (Saunders, Reference Saunders and Feifel1977).

Saunders explores the idea of the importance of welcoming people whoever they may be, in a spirit of complete and unconditional receptivity: “Come just as you are – you are welcome” (Saunders, Reference Saunders and Feifel1977, p. 163). She was particularly sensitive to the delicate state of rejection and humiliation in which terminally ill patients lived, especially as regards their suffering from the inadequate treatment for the pain. In reaction to this, she promoted an ideal of receptivity which should permeate all actions: “Those who welcome each patient to St. Christopher's do so with the conviction that he or she is an important person and that hospitality to a stranger is a prime necessity” (Saunders, Reference Saunders and Feifel1977, p. 163).

It is implicit, therefore, that Saunders understands the meaning of unconditionality and is aware of its importance for the development of the hospice movement. Thus, in her words we already find a hint as to a possible theoretical and practical connection between the meanings of ‘hospitality’ and ‘stranger’, regardless of the beliefs of the different actors involved, and which must, therefore, be considered without any limits of acceptance, in other words, in an unconditional manner. In brief, the unconditional acceptance of the “difference of the stranger” was already one of the concerns of the hospice movement at its beginnings.

Indeed, this aspect of the unconditional acceptance of the vulnerated other was always a central aspect to the founder of the movement. It was Cicely Sanders' intention that her proposal for care would not be restricted to one community; that the hospice movement be diffused around the world as part of a non-exclusive vision, eliminating any kind of prejudice or restricted access, based on any kind of difference, and maintaining the patient's identity and giving the patient the feeling of belonging and inclusion (Clark, Reference Clark1998; du Boulay & Rankin, Reference Du Boulay and Rankin2007).

However, one of the challenges for those who work with end-of-life care is that human beings each have their own way of manifesting their “living-dying” (Pattinson, Reference Pattinson1977, p. 44) and this is a fundamental issue for the hospice movement. To cite Saunders again: “But a hospice must welcome people simply on the grounds of their need and of their common humanity and has to find a way to enable each one to have his or her own appropriate way of dying” (Saunders, 1981, p.164). The question at stake here is: How does one receive each person the way they are, within their own sphere of values and needs? We believe that part of the answer to this question may lie in the narrow semantic connection between hospice, hospitality, guest, host and stranger, as we shall now try to demonstrate.

UNCONDITIONAL HOSPITALITY AS A FOUNDATION OF THE HOSPICE MOVEMENT

But, to what ‘hospitality’ are we referring when we think of the practices developed by the hospice movement? The concept of hospitality developed by Jacques Derrida is relevant to this article although we do not know whether Derrida held any specific consideration regarding his concept of hospitality in relation to the hospice movement.

What is hospitality for Derrida? This author is interested in a kind of receiving that he calls “unconditional hospitality”, antinomic to a restricted hospitality bound to the laws of rights and duties of everyday social or religious relations, which would impose “laws of hospitality, namely the conditions, norms, rights and duties that are imposed on the hosts (…) and on those (…) who receive the guest.” (Dufourmantelle, Reference Dufourmantelle2003, p.69). For the concept of hospitality defended by Derrida, the relationship between the agent and recipient of the hospitality is inverted, as the guest becomes the host to the other who originally received him or her, who welcomes him or her unconditionally, based on an active and impartial movement, without limitations or exclusions of any kind. The relations here are inverted as a result of receptivity which is entirely and unconditionally interested in the other and, in a way, subsumed in the other: The guest, therefore, becomes the host. From having been a stranger upon arrival, the guest is transformed into the one who will guide and, therefore, receive all the attention, without needing identification to be let in. In Derrida's own words: “the absolute or unconditional hospitality that I would like to offer to him supposes a break from hospitality in the current meaning, with conditional hospitality, with the law or pact of hospitality. (…) The law of hospitality, the express law that governs the general concept of hospitality, appears as a paradoxical law, pervertible and perverting. Absolute hospitality requires that I open up my home and that I give not only to the foreigner, but to the absolute, unknown, anonymous other, and that I give place [bold by author] to them, that I let them come, that I let them arrive, and take place in the place I offer them, without asking of them either reciprocity (entering into a pact) or even their names” (Dufourmantelle, Reference Dufourmantelle2003, p.23 and 25).

By our evaluation, such a view of “hospitality” could by all means be the grounding for important aspects of reception and support intended by the hospice movement, such as compassion, non-abandonment and protection. These dimensions are integral parts of an ethos that, above all, always calls for the host to be responsible for the other, without allowing any prior reference that the host has of this other to hinder the other's reception. In other words, this is not a matter of a responsibility to a debt, or motivated by a feeling of guilt, even less so by the practitioner's intention to obtain something in exchange - here or in the world beyond – but rather a matter of one feeling responsible for that which comes from the other and for the simple reason of the other's existing in this vulnerable state inherent to any living being who suffers and who should be helped. A responsibility which will require the host to be stripped of intentionalities; in other words, for the purpose of the hospice movement, the intentionality of this host should be cast aside, even if it may be substantive. What is imprimis at stake here is the other, the one who disturbs the host and would take absolute priority. In this regard, the idea championed by Derrida presumes that the host “(…) exposes himself, without limits, to the arrival of the other, to beyond the right, beyond hospitality conditioned by the right to asylum, by the right to immigration, by citizenship and even by the right to Kant's universal hospitality, which still remains controlled by a political or cosmopolitan right. [In brief] only an unconditional hospitality can give meaning and practical reason to any concept of hospitality” (Derrida, Reference Derrida2003, p. 204-205).

THE PHENOMENOLOGICAL EXPERIENCE OF THE OTHER

The unconditional hospitality conceived by Derrida and relative to the host-guest dynamic constitutes a unique and transformative possibility that is established as from this unconditional recognition of the other. This is an entirely new relationship, only possible through the experience of this other in the one who welcomes. Through the experience that transcends the phenomenon, that which Levinas calls the “face” is unveiled, the consequence of an experience which goes beyond that which the senses can represent as the result of perceiving the immediate reality that they apprehend (Levinas, Reference Levinas2005). For Levinas, phenomena are manifested. The face is not. It has no form, it does not appear to the senses. It is, nevertheless, the condition based on which responsibility for the other is established. “Access [to the face] is, in the first instant, ethical. (…) In the first place, there is the actual verticality of the face, its whole, defenceless exposure. (…) The face is significance, and significance without context (…) it is not a character in a context (…) in this sense one could say that the face is not ‘seen’. It is that which cannot be transformed into content, which our thought would encompass; it is uncontainable, it leads us to the beyond” (Levinas, Reference Levinas2007, p. 69-70).

The revelation of this face is the sine qua non condition for responsibility for the other, a responsibility which is unconditional and part of the very self. As Levinas writes: “This responsibility goes to the point of fission, all the way to the enucleation of the ‘self’ ”. And therein lies the subjectivity of the self” (Levinas, Reference Levinas2003, p. 152), a fundamental substratum for the unconditionality of hospitality, for an absolute responsibility for this stranger, for this hospes. This other who arrives disturbs he who welcomes him and questions his innocence in the world, thus making him, through this experience, altered. This experience lived by the host leads to the creation of the conditions for an “ethics of responsibility”, of a conception where “ethics is the relationship with the other, with one's neighbour (…) a contingent [bold by author] character of this relationship” for the “self does not come into view in its uniqueness apart from when it responds for others through a responsibility to which there is no possible escape, a responsibility from which I can never be released” (Levinas, Reference Levinas2003, pp. 45–46). From this point on, it is no longer myself who matters, but the other in myself, who, as such, forces me to respond for him, to be responsible for him.

The intersection between the ethics of Derridean hospitality and Levinas' ethics of absolute priority of the other before the self constitutes a condition of possibilities for moral quality in the relationships between health care professionals and patients, in the daily routine of those who work with end-of-life care. Both concepts require that this host understands what it means to care for someone on death's threshold and require a stripped down intentionality, an intentionality that does not use the other to achieve one's own objectives. On the contrary, they are configured in instances of exercising total receptivity of the other, and therefore may help build the required conditions which will serve as antidotes for controlling and monitoring the body of the dying person. They may turn the experience of the other's estrangement into a unique and transforming experience of the self in relation to the unconditional reception of the other, giving a new meaning to the very practice of dealing with others, integrating them into this transformed self. As Levinas says, “as if the invisible death to which the face of the other person is exposed (…) were ‘my business’” (Levinas, Reference Levinas2005, p. 194).

It is based on this ‘denucleation’ of the self of the one who hosts, that the conditions for full protection shall be established. By means of this experience of the other, the excessive expectations and frustrations that the “team” feels in regard to a supposedly good way of dying may be resized. By means of this experience of the other, the ‘hospice way’ could find the depth contained in Cicely Saunders' “Come just as you are – you are welcome”. By means of this experience of the other, the sense of the word ‘hospice’ reveals the meanings provided by the Derridean ethics of unconditional hospitality and the Levinasian ethics of absolute priority of the other.

Therefore, to our understanding, this perspective provides an immense revitalization to the contemporary construction of a more robust ethos for the modern hospice movement, considerably expanding its most commonly used elements, placed within the creation of this ethos under the form of guiding principles for the morality of human acts (Taboada et al., Reference Taboada, Ugarte and Bertucci2000; Randall & Downie, Reference Randall and Downie2003).

Nevertheless, the act of going to meet the other unarmed and, therefore, within an unconditional state - in accordance with the Derridean suggestion of an unconditional hospitality or the Levinasian unconditional responsibility – is one of the most challenging tasks faced by health care professionals who treat patients at the end of their lives. Indeed, this kind of practice demands a stripping down of the certainties that accompany their knowledge, an intense exercise of detachment as a requirement to meet this other, and the other's face; in other words, the necessary condition for this experience requires this ‘unarmed spirit’, the ‘denucleation of the self’, as so aptly expressed by Levinas. Thereafter, the bases for a receptive unconditionality are established, the result of an experience where the stranger is undone. Moreover, the unconditionality of this kind of hospitality requires that any a priori thought of the host is, at least initially, cast aside.

Therefore, this unconditionality calls for an ethical openness before this stranger, making this experience a ‘possible path’ in the reception of the one who is approaching. It is placed as an exercise for a collectivity that is made hostage to whom it receives - without, indeed, any certainty of lasting results – providing the bases for the exercise of the deconstruction of the power and domain over the other, a fundamental exercise for the prevention of acts that are especially detrimental on the threshold of death.

It is therefore possible to find a profound relation between the meanings of hospice, hospitality and stranger.

But this is the part relative to the “inspiration” of a necessary process for recognition of the other. Such a process is more easily followed in a relationship model where the patient is fully aware that death is near, which is still a challenge to the everyday medical practice, and even for the hospice movement (Centeno-Cortes C & Nunez-Olarte, Reference Centeno-Cortes and Nunez-Olarte1994; Campione, Reference Campione2004). The process must, therefore, be completed; “to expire”, to offer something to the patient, is necessary. And for that to occur adequately, it is also fundamental that the technical skills and qualifications of the health care professionals are firmly established, as they are of utmost importance to relieve the patient's suffering. Without these qualifications and skills, the phenomenological experience of receiving the other will be of little value. However, these qualifications without recognition of the other – of the other's needs and references, often antinomics to those of the “team” – may transform the care proposed by the modern hospice movement into just another technique to be applied.

THE PROTECTIVE DIMENSION OF HOSPITALITY

The task faced by the hospice movement, from the perspective defended here, is immense: How is one to spread the possibility of unconditionality within a care model for people at the end of their lives in a far-reaching setting and, therefore, with a huge demand for care?

Evidently, the implementation of this movement in the traditional health care system presents several obstacles in different settings. For example, in places which use high technology, routinization, medicalization and distancing in the doctor–patient relationship make the possibility of meeting the other more difficult and occasional.

Meanwhile in low- income countries, the lack of material conditions, of suitable locations for care, and bad working conditions and precarious housing often hinder the provision of adequate care.

The two situations described above give rise to the following questions: How can we overcome these barriers? How can we meet the other and receive him or her unconditionally? With what instruments?

Overcoming these barriers represents a challenge to the hospice movement. Indeed, in view of the vulnerated state of terminally ill patients, the line of thinking should rest on protecting these patients; including the large and expressive excluded portion of the population, with poor access to care and that, historically, fail to find the path to develop – as described by Amartya Sen – their ‘capabilities’ (Sen, Reference Sen2000). The word vulnerated is used because these patients are no longer merely vulnerable - like every human being is - but have already been afflicted, whether by a terminal condition or by the life conditions to which they are subjected.

In this sense, the insertion of the modern hospice movement into the traditional health care system will only be protective – and only as such will it serve its purpose in line with the foundations of this movement – if it is able to differentiate instruments of effective protection for the vulnerated person from paternalist instruments and those that undermine such people's fundamental rights. It will be better to follow this path as these patients are able to express and realize their legitimate wishes and desires, while fully aware of their terminal condition and the actual treatment possibilities.

This protective character may consist of two distinct aspects. On the one hand, it may be the result of a professional transformative experience, which may only be experienced by the individual, and that will lead that individual to unveil, before him- or herself, the Levinasian face of the other, with the consequential unconditionality of responsibility for this other. Through this essentially ethical meeting, the strangeness is partially dissolved, and the host becomes compelled to change attitude: the host becomes an apprentice of this guest and it is then that the host can meet the guest therapeutically and act in accordance with this meeting and with the other's needs that arise from this meeting.

A second form of protection will emerge from the construction of an end-of-life care policy which considers not only this practice of necessary and critically constituted protection: on the one hand avoiding the traps of an authoritarian and paternalist practice – supposedly in the best interests of the vulnerated other - and, on the other, not being the final version of a mechanism of control over the social body of these patients, suffocating the already scarce possibilities of development to which many of them have been subjected throughout their lives.

FINAL CONSIDERATIONS

At a time in which the hospice movement is spread worldwide and becoming an increasingly present alternative means of care in the traditional health system, reflecting on its moral and ethical foundations – which justify its performance – become essential. For this is a matter of seeing which effective moral values guide the current practices of caring for terminally ill patients, and thereafter, assessing the pros and cons of such practices, based on a consistent mental exercise in thinking about what the best consequences would be resulting from the application of the principles of absolute priority of the other and of unconditional hospitality, formulated by Emmanuel Levinas and Jacques Derrida, respectively.

Faced with the challenge of responding to the great demand for care at the end of life, the modern hospice movement has the task of constructing a path leading either to giving priority to the other who requests it unconditionally, or being absorbed as just another mechanism of medicalization of the social organism in the process of dying and death.

Grounded on receiving the terminally ill patient with compassion, the hospice movement is presented as a necessary means to transform the care offered to such patients and their families, in an identified setting with continuous and persistent intervention practices.

This transformation makes one of its constituents – hospitality, which as we have seen can could only be unconditional – into a central element which guides the foundations of the hospice movement, leading the host to be totally responsible for the other, taking the other in completely. Thus, a warm feeling of belonging – hospitium – can pervade the protective ethos of the modern hospice movement.