Introduction
Cicely Saunders, the founder of the modern hospice movement, ensured that spirituality was firmly established as one of the four pillars of practical hospice care alongside medical, psychological and social care. In developing her concept of spirituality, Saunders was influenced by Viktor Frankl (Walter
1996). Frankl developed logotherapy, a form of therapy based on the belief that patients should be able to give meaning and purpose to their lives. If this meaning is absent, people suffer from existential distress (Frankl
1985). In her article entitled “Spiritual Pain”, Saunders utilizes Frankl’s concept of meaning to approach the question of spirituality: “[W]e can always persevere with the practical. Care for the physical needs; the time taken to elucidate a symptom, the quiet acceptance of family’s angry demands, the way nursing care is given, can carry at all and can reach the most hidden places. Though this may be all we can offer to inarticulate spiritual pain, it may be enough as our patients finally face the truth on the other side of death” (Saunders
2006, p. 221). In her concept of “total pain”, Cicely Saunders was well aware of the need to understand spirituality in more than just the religious sense, even though she herself was from a Christian background (Saunders
2006, pp. 71–77).
Murray and Zentner offer one of the most established definitions of spirituality. According to them, spirituality is: “A quality that goes beyond religious affiliation, that strives for inspiration, reverence, awe, meaning and purpose, even in those who do not believe in any god”. The spiritual dimension increasingly comes into focus, “when the person faces emotional stress, physical illness or death” (Murray and Zentner
1989, p. 259). Spirituality, Tanyi notes, improves the individual quality of life by yielding hope and joy and by helping to accept one’s own mortality (Tanyi
2002). At a conference in the year 2009, where “over forty US leaders in palliative care, as well as spirituality and theology” were present, spirituality was defined as “the aspect of humanity that refers to the way individuals seek and express meaning and purpose and the way they experience their connectedness to the moment, to self, to others, to nature, and to the significant or sacred” (Puchalski
2010). This definition conceives spirituality as a broader concept than religion. Spirituality can have to do with beauty, values, altruism, idealism and “awareness of the tragic” (Cohen et al.
2012, pp. 801–802).
The unignorable impact of spiritual well-being on the quality of patients’ lives is frequently being discussed and has been illustrated by various studies. Hamilton emphasized the positive impact of the spiritual dimension on healing and health (Hamilton
1998). Sherman et al. have shown that the quality of life of patients with advanced cancer and AIDS can be increased if healthcare practitioners recognize and tend to the spiritual needs of patients and their relatives. They can supportively stand by their side with prayers, intimacy, and active listening in the face of losses that come with terminal illness and imminent death (Sherman et al.
2005). Giordano and Engebretson have stressed that spiritual experiences are a neurocognitive phenomenon with a salutogenic effect and should therefore be facilitated by healthcare professionals (Giordano and Engebretson
2006). In a recent study, Baldacchino et al. (
2012) accentuated the importance of patients’ spiritual coping with life-threatening illnesses. The reflection on spiritual pain shows an original connection to physical suffering in a way that less spiritual pain can mean to improve physical well-being.
However, it remains disputable if and how spiritual needs of patients in hospices can be tended to and if religious and spiritual notions coincide. Dudley et al. (
1995) point out that spirituality encompasses needs und forms of belief independent from organized religion. This aspect stresses the importance of interdisciplinary teams in hospices to meet the spiritual, but not necessarily religious needs of patients with meditation, music therapy and conversations. Prior to Dudley et al., O’Connor noted that spiritual needs may range from religious rituals to secular experiences, as they can occur with music or poetry. The challenge for healthcare professionals then consists in supporting patients by offering “an environment that recognizes individual needs and attempts to reduce fears” (O’Connor
1988, p. 37).
Description of the Problem and Purpose
Since 2010, we have been conducting a qualitative research about conflicts and decision-making in hospices in North Rhine-Westphalia, Germany. This research encompassed issues like moral conflicts between nurses, questions of responsibility or reflections on ethical decisions. Since 2012, our research focused on questions relating to spirituality as well. We wanted to know what type of role spirituality plays in daily practice, how spiritual care is provided considering the holistic approach of hospice care, and how spirituality is understood by full-time staff and the volunteers. Even if spirituality is perceived as a broader concept than religion, as mentioned in the introduction, it is necessary to consider religious questions in our research because hospices in Germany are full of religious symbols. These symbols are mostly Christian, Islamic or Buddhist, and they are an integral part of the understanding of the spirituality of the hospices. Beyond the religious topic, we wanted to know how spirituality is supported. Therefore we have structured our research in four items: (1) How do the hospice’s full-time staff and volunteers understand spirituality? (2) What rituals and symbols do hospices provide to support spirituality and/or religious practices? (3) Is religious diversity an issue? (4) What does spiritual care look like in practice?
Methods
The research questions required a qualitative design. Data collection was predominantly based on interviews. Data collection and evaluation of our study since 2010 has followed the methods of grounded theory, which was developed by Barney G. Glaser and Anselm L. Strauss and modified by Juliet Corbin and Strauss, because it abstains from presupposed theoretical concepts, and therefore does not merely verify hypotheses, but generates them (Glaser and Strauss
1967; Corbin and Strauss
2008). The logical structure of this procedure can be described, in the words of the American philosopher Charles Sanders Peirce, as abduction: “Abduction is the only logical operation which introduces any new idea; for induction does nothing but determine a value, and deduction merely evolves the necessary consequences of a pure hypothesis” (Peirce
1934, p. 362). Abduction allows for the factor of surprise in the acquisition of data.
Participants
Between April and May 2012, 22 semi-structured interviews were conducted with full-time hospice staff, including nurses (5), the directors of patient care (2), members of the psychiatric service (3), the directors of the hospices (1), chaplains (2) and volunteers (9) of four hospices in North Rhine-Westphalia (Table
1). The selection of participants was made according to two criteria: (a) willingness to take part in our study, and (b) experience with spiritual end-of-life care. In German hospices, volunteers are often more responsible for the social and therefore psychological comfort of the patient than the nursing staff. This explains the relatively large number of volunteers in our study. On the other hand chaplains are the professionals in regard to religious questions, e.g. the afterlife, but they are generally not hospice employees. Hence, we have just two chaplains in our study, because one hospice was managed by a chaplain (Protestant) and he consulted a second one (Roman Catholic) from a nearby hospital. Because nurses and volunteers are primarily women, care was taken to include male nurses and volunteers in our interviews to generate a diversified image of our object of research.
16 female/6 male | 4 female/1 male | 1 (female) | 3 female | 2 male | 3 female | 6 female/3male |
Question Guidelines
The initial question of the interviews was directed at the interviewee’s training and motivation for working in a hospice and his or her spiritual/religious belief. Most of the interviewees (19) had a religious (Roman Catholic or Protestant) background (8 female/3 male of the full-time staff, 5 female/3 male of the volunteers). Some of them (2) called themselves religious but did not want to get involved with a church. Others called themselves “spiritual” (2 female of the full-time staff, one female volunteer). Eight members of the full-time staff (5 female, 3 male) had a further education concerning spiritual questions or questions of mourning (Table
2). Three female volunteers had a spiritual education. This background information was necessary to provide context for the interviewee’s attitude towards spiritual end-of-life care. The next question referenced the concept of spirituality. Rooms, rituals and symbols of religion and spirituality were a topic as well as the religious diversity in a hospice. Subsequently, the interviewer raised the issue of offering spiritual care to patients and their relatives and the needs of the spiritual/religious needs of patients. The questions were arranged according to the following pattern: subjective belief—range of spiritual options in the specific institution—daily practice. Member checks were applied as interviewers occasionally referred to core statements of the interviewees for clarification and to ensure their validity.
Table 2
Religious affiliation of the participants
Full-time staff (13) | 8 female/3 male | 2 female | 5 female/3 male |
Volunteers (9) | 5 female/3 male | 1 female | 3 female |
Ethical Considerations
The Ethics Commission (Ethics Commission of the Medical Faculty of the Ruhr-University, Bochum, 21.10.2010, Registration-No.: 3850-10) raised no objections following the submission of the study protocol. The research was approved by the hospice directors, the chaplains, the nursing teams and the volunteers. One of the scientists explained the study verbally to the participants, and they received an information letter about the study as well. After this, they were asked to sign a consent form. Informed consent was obtained from all individual participants included in the study.
Data Collection and Analysis
The interviews were conducted by one of the authors (Walker) and two social scientists (Valerie Grimm and Kristin Illiger). They were recorded using a digital recording device and then transcribed verbatim. During this process, the data were anonymized and are now being stored at the institution responsible for the research. For the process of transcription, we used the EXMARaLDA computer programme. The two authors working independently from one another conducted the encoding process.
The results were compared and discussed in regular meetings. Due to our different professional backgrounds, one of us is a theologian, the other a philosopher, different priorities were set occasionally in the course of evaluation. This rendered necessary further interviews to clarify remaining questions. The process of data collection was concluded after it had been established that no further categories were to be identified, and it could be said, in relation to the underlying research questions, that a state of theoretical saturation had been reached.
Results
The following results are presented according to the key questions asked, namely (1) the concept of spirituality, (2) rooms, rituals and symbols in hospices, (3) religious beliefs and diversity practices in hospices, (4) supporting spirituality, and (5) successful spiritual end-of-life care (Table
3).
Table 3
Results concerning the provision of spiritual care in hospices
The concept of spirituality | No homogenous concept of spirituality Spirituality includes religious beliefs as well as a free-spirit that exceeds religion Every patient understands spirituality as he or she likes |
Rooms, rituals and symbols in hospices supporting spiritual end-of-life care | Silent room or chapel Special forms of therapy (aroma or music therapy) Christian symbols like crosses Sacraments Prayers and communal singing Personal belongings (like pictures that have a spiritual meaning) |
Religious beliefs and diversity practices in hospices | Limited knowledge by full-time staff and volunteers regarding religious affiliations that were different than their own Especially when treating moslems they are afraid of doing something wrong |
Practices supporting spirituality | Meditation Establishing trust and nearness Giving the opportunity to talk Listening Singing or praying together Offering alternative forms of therapy |
Successful spiritual end-of-life care | To take away someone’s fear Acceptance of one’s own death independent of any particular religion or belief |
The Concept of Spirituality
In the interviews, the concept of spirituality proved to be highly indistinct. One person said: “spirituality […] is difficult to grasp”; another said it was “another area where everything that has a religious aspect is part of it”. It had something to do with “the spirit” and was the “spiritual side of a person”. Some staff members included God in their definitions, while for others it was something “free-spirited, rather than fixed” in its meaning. Understanding spirituality as something that on one hand includes God, and exceeds religion on the other, corresponds with a study by McSherry et al. At the same time, the authors warn that not even the Christian understanding of spirituality is necessarily homogenous (McSherry et al.
2004, p. 938). But, as one of the interviewees told us “[e]verybody is spiritual whether they are aware of the fact or not”.
One volunteer member of staff expressed the following opinion when commenting on the status of spirituality in the everyday practice of the hospice: “My impression is that spirituality, although it is clearly wanted in hospices […] and is in the statutes as one of the aims, I mean one of four or five aims we should be trying to fulfill, in practice it is not given the importance you might think. One reason for that is of course that we haven’t been able to agree on a definition”. However, it is questionable whether the importance of spirituality in the everyday practice of hospices is dependent on there being an agreed definition. One core objective of a hospice lies in trying to take the greatest possible account of a patient’s wishes, thus precluding any definition which might prove to be too narrow. Every patient is given the space to understand spirituality as he or she likes (Stirling
2007). Milligan also emphasizes this position when he writes: “Spirituality should always be regarded as unique to the individual” (Milligan
2011, p. 48). This approach is hardly conducive to finding a definition which seeks to include all possible aspects of the concept. According to the European Association for Palliative Care, these aspects include “existential challenges” as well as “value-based considerations and attitudes” and “religious considerations and foundations” (EAPC taskforce on Spiritual Care in Palliative Care
2010). This coincides with Bash’s position that “spiritual experience is what each person says it is” and that “the task of nurses is to identify and respect that person’s expression of their spiritual experience and to offer them appropriate support” (Bash
2003, p. 14).
Rooms, Rituals and Symbols in Hospices
Hospices usually provide a so-called room of tranquility which the patients and their family members are able to use as a place of contemplation and prayer. Alternatively, hospices have a chapel into which a prayer mat and a Koran for use by Muslim patients have been placed. The patients’ rooms are often sparsely decorated, devoid of any crosses or other religious symbols; however, if the hospice specifically identifies itself as a Christian institution, there are crosses in the rooms that will be removed at the patient’s request. Occasionally, the pictures hanging in the entrance hall, in the lounge, and in the corridors also have “a kind of spiritual character because they have a kind of levity, a sort of resonance”. Even when Christian symbols are in use, the hospices emphasize their openness to people of all faiths.
The spatial layout of a hospice is intended to achieve “clarity and beauty”, creating a “very special atmosphere” by being peaceful and well-lit. This provides the basis for a range of services available to the patients, from discussions to prayers and communal singing to acts of religious worship and the sacraments (Holy Communion/the celebration of the Eucharist, Confession, Anointing of the Sick). Other types of therapy, such as aromatherapy and also music therapy, are used to supplement the spiritual side of care.
When a new patient is admitted to the hospice they are specifically asked about their religious affiliation, in order to enable the hospice to take better account of that patient’s (potential) spiritual needs. Patients often bring crosses, angels or pictures of the Virgin Mary with them as “sources of strength and comfort”; rosaries are requested especially by people entering the final stages of their lives. The patients’ choices of such items as crosses or pictures of the Virgin Mary clearly illustrates how the underlying spiritual conditions and the organization of rituals still follows the models laid down by Germany’s two largest churches, even though hospices have declared in principle that they are also open to non-Christians and atheists. This does not mean that spirituality does not take place in other contexts, as testified by the different specific types of therapy. However, the Christian context was present in the minds of the staff members we interviewed, acting as the background against which they would speak of spirituality in the sense of symbols and rituals.
Religious Beliefs and Diversity Practices in Hospices
Spiritual diversity has been conceived as a challenge from early on. Hall points out that the patient’s interpretation of Catholicism doesn’t necessarily have to match that of the chaplain (Hall
1997). If hospices are using Christian symbols as a point of orientation, the question inevitably arises as to how they handle patients who are neither Roman Catholic nor Protestant, and whether they are able to cater to their spiritual needs.
When dealing with adherents of different religions, particular emphasis was laid on how important it was to be familiar with the specific religious practices so that the nurses would know how to react in any given situation. The nurses could access this kind of information by attending courses, by reading the relevant literature, or by learning from patients’ family members. In particular, in the case of Muslim patients, as our interviewees repeatedly stressed, family members would take over many of the tasks usually undertaken by the nursing staff, such as the cleansing of the dead body. Occasionally, a Muslim patient would request a hodja or imam to be called to his bedside. The chaplains openly admitted to having no contact with Muslim patients. One chaplain explicitly stated that he was “not responsible” for them. The nursing staff tended to be somewhat reticent when engaging with Muslim patients, because they were “mostly cared for by their families”. Consequently, they concentrated on the medical and nursing needs of the patients. When treating Muslim patients, a sense of “nervousness” sometimes arose in the team “because it’s such unknown territory for us that we’re scared of doing something wrong”.
In addition, the nursing staff said they were “hesitant” when dealing with people whose religious affiliations were different from their own, even if they had completed a relevant training course. One of our interviewees recounted her experiences with a Hindu patient, saying “Hinduism was completely new to me”. The chaplain had given her some information leaflets to read. Her main questions were: “What do we need to bear in mind? What is special about their set of beliefs?” It was precisely because of the nurses’ limited knowledge that it was important for them to show “respect for different religions” and to treat people with “sensitivity and humanity”.
Some of the volunteer staff also openly admitted the gaps in their knowledge: “I know that there are Muslims and that they have different rituals and a different way of seeing things, but I couldn`t tell you much about them”. Volunteer staff and chaplains alike tended to feel a greater sense of responsibility for atheists than they did for patients belonging to religions or denominations with which they were less familiar. We were told of one case in which the relationship between a chaplain and an atheist was established on the basis of music and poetry. “In some poems we talked to each other about, I openly expressed my feelings. For me that’s also akin to an encounter with God. […] The patient saw it differently. And both viewpoints existed side by side. And that was just fine”.
Supporting Spirituality
One interviewee defined spirituality as an “attitude” governing the way in which people interact with each other. Another stated that spirituality lay in a “spirit of compassion”. It might be expressed through “little moments”, such the nurses gently laying their hands on the patients or passing them a glass of water. A further interviewee stated that spirituality was particularly helpful in “crisis situations”. “Patients’ finer spiritual needs and wishes develop here in the hospice when they realize that their lives are indeed slowly drawing to an end”. And it is against this backdrop that spirituality becomes connected to questions of a “life after death”.
Spiritual practices included “meditation”, people singing or praying together, or other alternative forms of therapy mentioned previously. But above all, patients were given the opportunity to talk. One nurse stated that she engaged spiritually with patients “when I treat the people, with whom I come into contact, with attentiveness and when I take their needs and wishes seriously, and when I show them respect […], when I can inspire a little trust in them”. The points which were identified by interviewees as being at the core of spiritual interaction between themselves and the patients were the ability to inspire trust and to be near at hand, but also to keep their distance when the situation required. “Spirituality for me doesn’t just mean praying and singing, […] but also being able to listen to and appreciate what a patient is saying to you about his own process of dying and about what comes after death. For me, those are the really spiritual conversations. There are certain spiritual practices, but in my work I am far less concerned with the practices and more with what takes place in the conversations, not only with the patients but also with the people who are closest to them […]”. Talking and listening therefore forms the basis of the spiritual relationship between patients and nurses, chaplains and volunteers. “Our primary task consists of appreciating and comprehending […] what he is feeling. Does he want to talk about death? Does he want to talk about dying? Is he in pain? I can gently try and find out these things by asking specific questions”. This does not mean, however, that every patient wishes to talk about dying and/or about topics of a spiritual nature. It is frequently the case that they just want “someone to be there” “in case things get serious”, someone who “will stay with them no matter what”. This description corresponds with the relational model of Callahan, which encompasses the communication of spiritual sensitivity through such means as “personhood, therapeutic touch, being present, listening” and “singing” (Callahan
2013, p. 175).
Successful Spiritual End-of-Life Care
One interviewee described successful spiritual end-of-life care as follows: “The most important thing was always to take away someone’s fear, to take away their fear and to say: ‘I am with you.’” In our interviews, the hospice nurses and volunteer staff both stated that if they were able to mitigate the patients’ fear not only medicinally but also in a psychosocial or spiritual respect, they viewed this as a success. One person voiced the opinion that it was not particularly important whether someone was religious or not: it was more important that each patient is “happy” with his or her own attitude towards imminent death. In the final instance, a patient’s acceptance of their own death played a more important role than any particular system of belief, at least as far as the patient’s fear of death was concerned. The associations when dealing with spirituality pertain to the distress and fear of the dying person, their feelings of guilt and their memories, questions of “what is coming, the afterlife” and the manner in which the patient can bid farewell both to life itself and to the people they are leaving behind. “I cannot stop the patients dying and I cannot take away their distress, but I can be there for them and, through my presence, my compassion and my willingness to care for them I can take away a good deal of their fear”. This type of end-of-life care not only takes on a form of expressiveness through the ability to listen and talk, but also has silence as a core element—irrespective of whether spirituality is a topic of conversation, and whether it is shared or not.
Nevertheless, spirituality is only one aspect of everyday practice in a hospice. “There is nothing spiritual about someone suffering a sudden, chronic shortness of breath”. Attacks of this kind, together with other painful physical conditions, were clear indications that something specific needed to be undertaken to remove the patient’s source of pain. This raises the question of how much importance is ascribed to spirituality in the everyday practice of hospice care. “I think that, in practice, the aspect of spirituality doesn’t have the value placed on it that you might expect […] time is spent on more practical things like: ‘my arm hurts’ or ‘can you bring me a fresh cup of coffee?’ […] ‘Can you put me in a wheelchair and walk me around for a bit?’ A lot more time is given over to that kind of thing”. Of course, this may be connected to the fact that certain patients spend significantly shorter periods of time in hospices. If a dying person only spends three days or even a few hours in a hospice, then there is no time or space for any spiritual end-of-life care.
Conclusion
The hospice idea has at its core the principle of allowing people to die with dignity. This takes place in an atmosphere of peace and autonomy, with as little pain as possible and, to the greatest degree possible, in the circle of one’s most beloved family and friends. There are those who would suggest that none of this has anything to do with spirituality and that it is actually all about the psychosocial needs of the patients and residents, with it only being interpreted as spiritual by the staff. This is correct to a certain extent because the spiritual, in practice and as a consequence of its broad definition, does blend together with the psychosocial indeed, the former could not exist without the latter. But despite all the criticism surrounding the imprecise definition of spirituality, we have nevertheless attempted to show, that in the every day practice of hospices, this concept works as a form of tact to take away the fear of patients, regardless of how vague and multi-faceted it might be. Therefore, spiritual end-of-life care differs from clearly defined or at least more clearly definable areas such as physical or psychosocial care. Regarding spiritual conversations and spiritual practices, the content of the discussions and the practices are less important than the forms these practices take, which, in the final instance, are in the hands of the speaker or the person carrying out the spiritual practice. Due to their nature, they cannot be superseded or replaced by a physical or psychosocial discourse. Ultimately, people entering into spiritual discourse of this kind will find that there is a place for them within its open definition.
If hospice nurses and volunteer staff were able to mitigate the patients’ fear not only by administering medication to them, but also in a spiritual respect, they saw this as successful spiritual guidance. This is to some degree independent of religious belief because it refers to a “spirit” or “inner core” of human beings. But this guidance needs assistance from professional knowledge considering religious rituals if the patients are deeply rooted in a non-Christian religion. Here, the lack of knowledge could be eliminated by further education as an essential but not sufficient condition. This remains with the awareness and the attentiveness of the individual who performs spiritual end-of-life care, in regard to which it is not always possible to evaluate whether it is applied correctly or wrongly and whether it is successful. A rest of uncertainty remains.
Limitations
Our study has been subject to a number of limitations. The individuals interviewed by us were aware of the importance of spirituality in day-to-day care. In particular, volunteers were in the pleasant position of being able to make sufficient time for patients and to experience spiritual moments with them. The results are therefore influenced by a specific setting and organizational structure. A different setting, in which time-management cannot be handled as generously, and in which volunteers do not play a significant role, is likely to generate different results. In hospices in Germany, the spiritual needs of patients are tended to as part of the caregiver’s daily practice. However, their perceptions are not entirely transferable to caregivers, for example, in hospitals. Data collection took place in small institutions and in only one German state. Results might therefore have been affected by our specific sample set inasmuch as the reactions of our interviewees to our questions or requirements might have been influenced by regional temperament or cultural background. In order to better understand spiritual end-of-life care, further studies are needed which involve hospital settings, palliative care units, nursing homes, and hospices with different religious backgrounds. Additionally, further studies are also required in institutions of different sizes and in different socio-cultural surroundings. These studies might be able to show us more specifically what spiritual care means and how it can be implemented in different institutions (Selman et al.
2014). Further research is also required concerning the question whether nurses and volunteers actually manage to meet the needs of patients and their family members in the care they provide. The lack of knowledge in these fields is apparent, as Cobb et al. recently pointed out (Cobb et al.
2012).