Abstract: Death is a transitional process, which may be heralded by deathbed phenomena (DBP) such as visions that comfort the dying person and prepare them spiritually for death. Medical practitioners have been slow to recognise DBP and there has been little research into the spiritual effect that DBP have on carers, and how these phenomena influence their work. A pilot study looking into the incidence of DBP has therefore been conducted with the Camden Palliative Care team. Results revealed that patients regularly report these phenomena as an important part of their dying process, and that DBP are far broader than the traditional image of an apparition at the end of the bed. The Palliative Care team expressed concern about a lack of education and/or training to help them recognise the wider implications of DBP, and deal with difficult questions or situations. Many DBP may go unreported because of this. The pilot also suggests that DBP are not drug-induced, and that patients would rather talk to nurses than doctors about their experiences.
INTRODUCTION
Anecdotal evidence dating back to the nineteenth century suggests that deathbed phenomena (DBP) are common, and have been reported throughout history and in many different cultures (Gurney et al, 1886). Death may be heralded by phenomena such as visions, or apparitions, that comfort the dying person and prepare them spiritually for death, or for the ‘crossing over’ to a new reality (Kübler Ross 1971; Walker 1973, Servalli 1998). However, discussion of these phenomena has largely focused on evidence for the existence of life after death (Dewi Rees, 1971; Greeley and McCready, 1976, Osis and Haraldsson, 1977). Consequently, few satisfactory scientific studies have been carried out to define the frequency and occurrence of DBP. It also means that existential or spiritual issues arising for palliative care workers when confronted with DBP have been neglected.
There is however, now a growing recognition by medical practitioners of the psychological and existential significance of DBP or ‘approaching death experiences’ (Weisman 1972; Patterson 1977; Callanan and Kelly 1992). Many health care workers who are involved with end of life issues are appealing for a new Ars Moriendi – instructions on how to die well (Kohn, 2004). According to Imhof, the problem is that death is not taught as a medical subject, and ‘dying right’ is not part of medical studies. “Although all of us will die, hardly anyone is prepared, or is preparing to die right” (Imhof, 2004). The Dalai Lama in his book ‘Advice on Dying’, describes a psychological process for the preparation for dying, which can be practised at any time during life, and is trans-cultural. He also points out that discussion of death, and the dying process, is rarely addressed in our Western culture (Dalai Lama 2000).
That death and dying are seldom discussed is a matter for concern for some medical practitioners. Seravalli (1988) states that doctors and nurses are often adversely affected by death. “The fear of death may reflect a sense of impotence, a defeat as a physician. The physician also may feel the universal fear of death itself, and therefore experience identification with the dying person.” But he maintains, “If we open ourselves to what can be understood of the particular world of the dying, the feelings that are often present in the sickroom might become bearable” (Servalli 1988). This supposition supports the work of Elizabeth Kübler Ross. During her extensive research into the dying process, Kübler Ross (1971) found in medical staff “A lot of not only denial and rationalisation, but also hostility and some very aggressive behaviour”. She concludes, “What all of us have to learn is to accept death as part of life. When we have learned this, then maybe we can help our patients learn it too.”
Although Heyse-Morse (1966) does not comment on DBP, he recognises the need to consider the spiritual pain of dying, and the importance of the right kind of support given by the carer. He believes “Effective help implies that the carer is fully present to the sufferer, person to person, deep calling to deep”. But, he does not discuss how carers can develop their skills so they can better facilitate what is often an emotionally charged process. Una McConville conducted an in-depth literature review of DBP in her Masters thesis Ways of Knowing: Accounts of ‘sense of presence’ experiences and deathbed visions 1969-1999. Her analysis clearly indicates that the majority of accounts of DBP come from family carers and nurses, and very few from doctors. However, there appears to be limited research into DBP and the impact they may have personally and professionally on those who care for the dying.
METHODOLOGY
In order to prepare for a future comprehensive study of DBP, in July 2003 we approached the Camden Palliative Care team and invited them to take part in a pilot survey. Participants were asked to consider their clinical practice over the past 5 years, and the incidences of DPB they had experienced.
The Camden Palliative Care team deals with over 1000 referrals per year. It was considered that this number of patients would provide enough information for a small pilot survey to be carried out to explore any concerns and issues the Camden Palliative Care team may face regarding DBP.
Although we recognise that this was a very small and restricted pilot, it brought to light important themes about the spiritual needs of the dying and how palliative carers can be better supported to meet those needs.
The study was granted ethical approval by the Camden Primary Care Trust Ethics Committee, and to comply with the Data Protection Act, participants were allocated numbers for purposes of computer storage to protect anonymity.
Thirteen members of the palliative care team were invited to take part in the pilot. Nine agreed. (Two refused for personal reasons, one was on maternity leave, and another on holiday). Three were medical doctors, five were nursing staff and one was a support worker. All the participants have had at least five years’ experience of working with the dying, and each gave informed consent.
The qualitative research fell into two parts: a questionnaire and a tape-recorded interview.
The Questionnaire
The questionnaire was divided into three parts. Part 1 provided demographic information. Part 2 asked about the interviewees’ professional observations on DBP, including the effect that medication may have had on patients who experienced DBP. Part 3 studied the impact that DBP may have had on the spiritual or religious beliefs of interviewees.
The Interview
The interviews were individually conducted in a private room located at the Camden Palliative Team workplace. They were semi-structured in style, tape recorded and lasted approximately 1 – 1.5 hours. Following the interview, the tape recordings were mailed to the study secretary who made verbatim transcripts. These transcripts were used to extract questionnaire information that had not been reported at the time of the interview, as well as providing a source of verbatim quotes used in this paper.
The questionnaire was sent out by eMail prior to the interviews. However, only two of the team had completed it by the time of interview. Therefore, the tape-recorded interviews became the main source of data. Each person was encouraged to talk freely about their experience of deathbed phenomena, and the effect it may have had on them personally and professionally. Enough direction was given to cover the criteria of the questionnaire. Each member was reassured that the interview was confidential and that any quotes taken from the tape recording would not be attributed.
RESULTS
The general sense – learned from the interviews – indicate that DPB occurs relatively frequently. Patients and relatives tend to talk to nurses more than doctors about DBP, which supports the findings of McConville’s thesis Ways of Knowing (1999). However, it is interesting to note that even though the data show that fewer patients talked to team doctors about DBP, all three doctors willingly recounted stories of DBP experienced by their own relatives, while only one nurse out of five did so. Two of these four interviewees had experienced synchronistic DBP with a close dying relative. Both described it as a strange – “a bit spooky” said one – although not a frightening experience. A third interviewee spoke about a family myth concerning a relative’s deathbed vision and her final words, “Oh, what a beautiful place”. The fourth interviewee witnessed a gravely ill relative relating a series of powerful visions of dead family members before the relative died. The interviewee was aged twenty at the time, and was profoundly influenced by the experience. “I’ll tell you that it remains the most powerful experience... I can’t imagine anything having a greater impact”. The interviewee believed that these visions were an intensely spiritual experience for the relative. “They made the prospect of dying less scary – because he kind of knew where he was going and that it would be nice”.
Intrinsic part of the dying process
The nine interviewees believed DBP not only exist, but are an intrinsic part of the dying process. It was commonly agreed that DBP are an intensely personal, and often spiritual experience that helps the patient to become reconciled with events in one’s life, and therefore to come to terms with one’s death. Eight had either witnessed patients experiencing deathbed phenomena at the time they occurred, or patients had talked to them about the experience after the event. Seven interviewees had also heard accounts from patients’ relatives.
None of the interviewees considered their personal religious or spiritual beliefs had been influenced or changed by witnessing DBP, or by hearing stories from relatives. “They are quite comforting for me,” said one interviewee. However, some of the interviewees found DBP hard to define clinically. “I find it [DBP] difficult to explain because maybe it’s some kind of psychological construct where they are reviewing their life and that’s manifesting itself in some kind of voice for some people, or vision for others. Maybe it is ghosts, I don’t know. There are a lot of unexplained things,” said one interviewee. Another interviewee was open to several possibilities. “It could be a function of the brain shutting down or it could be someone who is moving to a different place”.
One interviewee believed DBP to be a transpersonal experience – “something bigger than that individual person”. Another thought it to be an existential process – “a real spiritual event”, or, as a third interviewee inferred, an “altered state of consciousness”. Yet another spoke about DBP as a normal part of dying – a transition. “It’s about letting go of this physical world and about preparing for what’s going to happen next”. Another summed up DBP as “things that can’t be explained by science”.
Hallucinations and DBP
Nevertheless, the nine interviewees clearly defined the difference between DBP and drug-induced hallucinations. Virtually all patients cared for by the team in the past five years were on some kind of pain controlling medication. Typical drug-induced hallucinations described by the interviewees included patients seeing animals walking around on the floor, children running in and out of the room, devils or dragons dancing in the light, insects moving in wall-paper, or mistaking something on the carpet for a pattern. They also described patients ‘plucking’ at the air, and shivering. “You’ll see them looking around the room rather quickly”, observed one interviewee. “You ask them if they are seeing things around here that I can’t see? And they will say ‘Well there’s that little boy that keeps running in and out. Do you think he’s really there?’” The interview concluded that although these hallucinations are vivid, they are annoying rather than particularly frightening. “Hallucinations I can control”, said another interviewee. “I can switch the drugs around so they have something that has got inactive metabolites that are not going to accumulate for them, and cause a problem; it’s reversible to a large extent”.
The interviewees believed that DBP differ from drug-induced hallucinations because they hold some kind of profound meaning for the patient. One interviewee commented, “The ones who’ve had [drug-induced] hallucinations know that it’s an hallucination; whereas the people who talk about what I would call a deathbed vision – if you can get them to talk about it – they’ll explain and suddenly stuff comes out that you get blown away by something that’s happened in their life that this [DBP] relates to”. Another interviewee gave an example of a patient who experienced both drug-induced hallucinations and DBP at the same time. The patient reported seeing insects, and he thought the nurses were going to poison him. But he also experienced the comforting presence of his mother – who had died of lung cancer several years previously – sitting in the next bed. “He knew everything was going to be all right because his mother was in the next bed, keeping an eye on him. Even though, to me, he was hallucinating, it felt very different when he spoke of his mother. It was a different language he used, very different”.
Identifying the Language
Several interviewees spoke of DBP as a prognostic indicator for nearing death, which is encapsulated in the language used by patients. “It’s the language that I hone it on, and I think ‘this is different’… That’s the switch; it’s the strange dream, it’s granny visiting” said one interviewee. “It’s a transition that once ‘Granny’ has visited, or whatever, I know, then, they are almost certainly going to be peaceful as they let go of this physical world, and they’ve got this peace to look forward to what’s next”. Another spoke of a patient they had seen on the morning of his death. The patient appeared confused to hospital staff, who believed this disorientation was caused by medication. However, the language the patient used triggered a belief for the interviewee that he was actually dying. To the interviewee it felt as if the patient was attempting some kind of confession. “He kept saying ‘I’ve not really done anything wrong’. I asked him what he meant by this. He said ‘I’ll be getting into the car then, but I know I haven’t done anything wrong’”. The interviewee remembers saying to the hospital team, “I think he’s deteriorating. They replied, ‘we’re a bit worried about the medication he’s been having for pain, and maybe it’s the side effects’. I thought ‘No, it’s not that’”. The patient died later that afternoon.
Reconciling to death is part of DBP
The interviewee who accounted for the highest percentage of related DBP survey defined DBP as anything that happens as people die. This included patients attempting to process or be reconciled with their lives. “What I find is that people start to process things that they haven’t processed before as they die... I would say that these are all things that happen as people die, so it’s all phenomena”.
Another agreed with this view. “They [patients] are processing their life and looking towards where they are going, and who may be there or what spiritual aspects of life they are going to have. They are definitely taking stock of what’s gone on, and also dealing with their inner selves, facing themselves – maybe for the first time because they haven’t done it before. There is nowhere to go – no escape when you’re dying”. “There is certainly a sort of global making peace and that kind of thing”, stated a third interviewee. “People will reconcile differences with children or spouses will move back in if they’ve been separated or divorced, things like that”. A fourth interviewee supported this theory. “There’s this urgency to have discussions with family members and repairing broken relationships, and going on to have good, accepting deaths. Others don’t – and it tends to be, in my limited experience, that agitated deaths come about because of unresolved issues”.
“My experience is that dying patients process really quickly”, confirmed another interviewee. “When they know they’re dying, they process things that might take you or I several years to be aware of. They deal with it in weeks or months…. There’s just a sense that the perspective of dying means you cut out all the crap and only focus on what’s important. It’s a shame that you have to wait till you’re dying to sort out your direct line system”, he concluded wryly.
An important part of palliative care
The interviewees were in agreement that helping patients to become reconciled with their life is an important part of palliative care work. One interviewee encouraged an agitated and rigidly controlling patient to write down his feelings as part of his dying process. The interviewee described the velocity of this patient’s outpouring as a transpersonal experience – a deathbed phenomena in which something inside the patient was spurring him on to make sense of his life, and to reconcile himself with his death before it was too late. “He suddenly realised, ‘well actually, I am going to die’, and this horrible distress just overwhelmed him”, said the interviewee. “He started writing phenomenal volumes of work; sixty pages at a go about death and dying, his life and relationships”.
Another interviewee, alerted by a patient’s sudden compulsion to write poetry for her young children, used this to encourage the patient to arrange much needed care for the children after her death. “The fact she had done this poetry, to me, meant that I could now push her against the wall and say, look, let’s do the guardianship now”.
DBP is broader than the archetypal image
It became clear that the interviewees considered DBP to be far broader than the archetypal image of ‘take-away’ apparitions or visions at the end of the bed. “You almost want the Madonna at the end of the bed to say, ‘well, it’s a deathbed vision’. But I think it’s much wider, more subtle than that”, said an interviewee. “I think there are deathbed spiritual changes that happen and sometimes it can just be a patient saying, ‘I felt very warm. Something came round me and I felt incredibly secure; I can’t describe it to you, I just felt okay and I knew things were going to be okay’”. Another interviewee talked about DBP as an energetic change around the bed of the dying patient that produced a feeling of comfort. “This feels nice. It’s a bit like the smell of fresh bread. It’s just comforting and nice”.
All nine interviewees referred to the importance that dreams and waking dreams play in helping patients to reconcile with their lives and to let go. Patients talked of these dreams as being different from normal ones, or from nightmares; they are usually awake when these occur and are reassured by them. “That’s the words they often use, ‘I am having these strange dreams, and I normally don’t have them. They are different from normal ones, and I am awake when it’s happening and I can remember them”, said an interviewee.
These dreams often mark a switch in the patient’s behaviour. Before, the patient may express anger and agitation with medical staff and/or relatives. However, following a DBP related dream “there’s a peace, and comfort afterwards, and they are very relaxed. The family are more relaxed after it as well” commented an interviewee. “I’ve got a patient who dreams that he is dead”, recounted another interviewee. “He knows he’s dead because only other dead people are in the dream; it’s usually family members who have died. He was very comforted by this, so this is something I relate to deathbed phenomena”. A third interviewee held similar views about a male patient whose dreams helped him to process his life. “The dreams indicated to him, at times, that he was being judged by some higher power, and yet there was also temptation in the dreams. So in a way he was trying to resolve it, and that was close to his death”.
Nevertheless, sometimes these dreams are far from immediately comforting. Another interviewee told a story of an elderly Jewish woman who had a very distressing dream in which she experienced being raped on Euston Station by German soldiers. The dream or vision was so real that she became very agitated, and even wanted to make a complaint to the hospital authorities. To calm her, she was given medication. However, it wasn’t until her son spoke to the medical staff that the deeper significance of the dream emerged. During the war, Germans had raped members of her family prior to them being gassed. The patient however, had escaped. So, for her, this dream – or vision – was based on reality. The interviewee called the Rabbi who spent a considerable amount of time with the patient helping her to come to terms what had happened to her family. The interviewee believes this was a “classic deathbed vision”, because the dream had helped the patient to become reconciled with what had happened to her family and relatives before she died. Several interviewees believed, however, that those who deny death do not have these vivid waking dreams. “Or if they do they wouldn’t tell us anyway because that means mentioning someone who actually died before. It would be an acknowledgement that death actually exists”, remarked one interviewee.
Unreported DBP
The issue of encouraging patients to talk about their DBP experiences emerged as a poignant theme during the interviews. The overall incidence of reported DBP by the interviewees is small in relation to the amount of patients they have cared for. When questioned about this, the interviewees echoed the same concerns expressed by Barbato, et al (1999), who believe that patients and relatives are reluctant to talk about DBP through fear of ridicule or dismissal, as well as lack of public awareness.
One interviewee agreed that patients are embarrassed to speak about what they experience for fear of distressing relatives, or appearing mad. “I think they may be reluctant to say, ‘Oh I saw Dad’. I think some people might be embarrassed to say that”. Another interviewee supported this. “I think a lot of people don’t talk about experiences like this because they feel ‘what are they going to think of me if I start talking about ghosts?’”
Another interviewee suggested a further reason why DBP may go unreported. The Camden Palliative Care Team work in a multi-cultural environment, so many patients do not possess the language skills to explain what is happening to them. “My concerns are”, said the interviewee, “that we’ve got patients whose first language isn’t English, who can’t describe to us what they are experiencing”. This interviewee suggests that the inadequacy of language itself may also be responsible for the lack of exploration into something that is so hard to explain. “We just don’t have the language to describe it; and that’s the reason we don’t investigate it”. But the interviewee believes this is compounded by the lack of privacy in hospital wards. “It’s phenomenally difficult to talk to patients on the ward where the cleaner keeps pulling back the curtain, supper appears, or a visitor arrives”. But, the interviewee concluded the main reason why DBP goes unreported is because medical and nursing staff do not routinely ask their patients about their experiences. “I’m sure a load of them go by the by, and we miss them”.
However, another interviewee pointed out that often people don’t want to talk about DBP. “As a matter of fact, a lot of people aren’t conscious; they are very drowsy or at rest…. I would be very open to engage with the patients on another level but a lot of the time that doesn’t happen”. Even so, this interviewee was conscious of the need for awareness and compassion when dealing with the dying. “It calls out a more gentle holding of the sacred as well”
Another interviewee believed that medical training is not conducive to encouraging patients to talk. “A lot of people [medical staff] reach a point of being very confident within a framework, or a model. Perhaps it’s too scary to hear patients say things that do not fit the model you have been clinging onto. But by going beyond this model you open yourself up to hear things, and that’s when you learn from your patients.”
The interviewee believed that learning from patients is a vital part of palliative care. “I am always trying to learn from what they are saying to me, and if it doesn’t fit my previous preconceived idea, I try to still hear it, and see if I can incorporate it somehow, how I communicate with them”. But he also made the point that most medicine walks away from a dying patient. “They’re [the dying person] regarded as medical failures. Death is the enemy… It’s taken me many years to shrug off this implication, and to get to the point of seeing death as a natural part of life – part of the cycle”.
Encouraging patients to talk
The qualities of openness and honesty, a willingness to listen, and normalising DBP were considered to be important factors in encouraging patients to speak of DBP experiences. “I deal with it by being open-minded, and saying to my patients that it’s okay to talk about it” said one interviewee. “Some of them [patients] are not sure and wonder if it’s the morphine. It’s about reassuring them that this is quite normal and it happens to quite a few people, and most people find it comforting”.
“You just need to listen,” confirmed a second interviewee. “I’m asked a lot about my own beliefs. People want to know and I think that’s part of sharing. I’m happy to talk about my beliefs to patients if they ask. And sometimes this leads patients on to talk about the afterlife and things like that. So that’s how they test the waters a bit”. A third interviewee echoed the need for patients to test the waters. “A lot of people test the waters. They might tell you half of something. They want to know whether you are okay with that. Then they might tell you a bit more”
A fourth interviewee made similar observations, and called out for colleagues to be more aware of the needs of dying patients. “Some patients throw out these little emergency flares – help! They’ll say something – and when that happens I want us not to ignore it, as I believe sometimes a lot of us do. It’s much easier to deal with the pain and the vomiting than to deal with the ‘help’”. Yet another observed that some patients just want to share their experiences with someone who will understand. “But of course, you may come across someone who is quite distressed by what has happened and wants answers”.
Challenging work
All the interviewees referred to a sense of being called to work with the dying, and of feeling privileged to do so. “You can get chatting to people about all sorts of things. Caring for the dying is very precious”, said one interviewee.
However, the nine interviewees were acutely aware of, and were challenged by being viewed as spiritual mentors who can provide answers to searching questions. “We are the new priesthood by the bedside. We are usually the main people that patients talk to about dying. To me the question is if we’ve got the guts and openness to listen”, said one interviewee. A second interviewee agreed. “We fulfil a priestly function.” But, the interviewee qualified this by saying, “I know a lot of very spiritual men who are vicars who would be absolutely right to talk to – and many who you would not want to talk to. I think it’s an individual choice”.
One interviewee found it more difficult when patients struggled with their ambivalence about spiritual or religious belief, or a comprehension of an afterlife. The interviewee was also acutely aware that some patients regarded the palliative care team as all-powerful. “Often they want answers from you and – in a way – you’re an authority figure with an enormous amount of power. We are seen as the person who dictates whether they [the patient] have a good death or not, or whether their symptoms are going to be controlled. I think we forget the significance of this.”
Another expressed discomfort when patients sought spiritual reassurance by asking personal questions about the interviewee’s own faith. “When they ask a question about my own belief, it feels to me that it’s got a weight stronger than it ought to have. It should not matter what I think. But I believe their thinking is most likely to be, ‘well, if it’s okay for you then with a push and a shove, it’s probably okay for me’… However, I do not want my own beliefs to influence someone who was dying”.
Further existential training
The interviewees expressed a need for further education or training to deal with existential issues. “We take them apart emotionally by exploring things with them, but we don’t have the skills to put it all back together again all the time. There’s a danger you could be left with a broken patient. With the best will in the world, if we are not careful, we can make things far worse”, said one interviewee.
Two interviewees voiced the same concerns about the difficulty of ‘teaching’ spirituality. “You can’t just teach this [existential issues] to somebody. It goes to the core of the person in the end”, commented one of the interviewees. Another admitted to a wariness of prescribing ways of doing things because there was no ‘prescription for death’. “Some people try to get patients to die in a way they believe is the way to die. But people will die in the way they are going to do it. We’re not going to change that”.
Discussion
The research team are grateful for the generosity of those who took part in this pilot survey. Early on it became clear that the Camden Palliative Care Team are compassionate and caring professionals who feel privileged – and called – to work with the dying. Their expertise and observations have been invaluable for the future expansion of this research project.
During the interviews it became clear that all nine participants believed that DBP not only exist, but occur relatively frequently. Interviews also revealed that the participants believed DBP to be an intrinsic part of the dying process. Several interviewees believed that DBP were a prognostic indicator for nearing death; patients for example, using ‘Granny visiting’ language.
Interviewees found DBP hard to explain or to define clinically. Although there was no consensual view on whether DBP could be considered as a psychological or a transcendent experience, all interviewees agreed that DBP are an intensely personal – and often a spiritual experience – helping the patient to become reconciled with events in his or her life, and therefore to come to terms with one’s death. They also considered DBP to be far broader than the archetypal image of ‘take-away’ apparitions or visions at the end of the bed.
The issue of encouraging patients to talk about their DBP experiences emerged as a poignant theme during the interviews. The overall incidence of reported DBP by the interviewees is small in relation to the number of patients they have cared for. Embarrassment, the fear of distressing relatives, or appearing mad were cited as possible reasons, as were lack of public awareness of DBP, language difficulties in a multicultural society, and lack of privacy in a hospital environment. The point was also made that some patients may simply not want to talk about their experiences.
This survey supported the findings of other studies in that patients tend to talk to nurses more than doctors. However, this may indicate the archetypal inapproachability of medial staff. In contrast, the doctors taking part in this pilot survey showed themselves to be compassionate and caring about their patients and very receptive to DBP.
It was acknowledged that the team did not usually make the first move in asking patients about DBP experiences. A reason for this may be the interviewees’ expressed lack of education and/or training in dealing with DBP. Traditionally death is seen as failure in the medical profession, and doctors and nurses may tend to walk away from it. Openness and honesty, a willingness to listen, and an ability to understand a patient’s language or signals were considered to be important factors in encouraging patients to speak of DBP experiences.
All the interviewees were familiar with drug-induced hallucinations. Most patients cared for by the team in the past five years were on some kind of pain control medication. Typical drug-induced hallucinations, although vivid, were annoying, though not particularly frightening, and could usually be controlled by altering the patient’s drugs. Interviewees agreed that DBP visions were different; they were usually comforting and held some kind of profound meaning for the patient.
All interviewees referred to dreams as an important part of DBP. These were usually reassuring ‘waking’ dreams – different from normal dreams or nightmares – which helped patients to deal with unresolved issues in their lives.
The nine interviewees were acutely aware of, and challenged by, being viewed as spiritual mentors who could provide answers to searching questions. They shared concerns that although they work at the front-line, current training for palliative workers does not specifically prepare them to deal with the pastoral needs of the dying.
Recommendations
The nine interviewees made the following recommendations for improving the awareness of DBP and the spiritual needs of the dying, together with their own needs for further education in this area.
Pastoral care
_ A greater understanding of spirituality to enable engagement with the patient at a level that is appropriate and right for them as well as the interviewee
_ Knowing what to say to avoid ‘fobbing off’ the question, or the feeling of floundering in the dark
_ A specialist hospital multi-faith minister, available for all community patients and medical staff
Carer support
_ Acknowledgement and awareness that DBP exists
_ More therapeutic skills
_ Learning the language of the dying
_ How to create a safe space where patients can be honest and open
_ Strategies to help patients who are angry and aggressive
_ An educational booklet in the Ars Moriendi’ (The Art of Dying Well)
_ Forming a group with community and in-patient carers to discuss DBP issues
Supervision
_ A desire for individual therapy sessions within the unit
_ Awareness and open discussion of DPB to be built into team structure
_ Annual workshops on spirituality and DBP for the team (“You may not know why it happens, but it’s knowing that it happens.”)
_ Supervision specifically related to DBP issues and concerns
Conclusion
Although only a small study, the results point to the importance of DBP, which have in the past largely gone unrecognised and unreported. There is clearly a need for further training for the palliative care teams in the nature and spiritual meaning of these experiences, and the way staff can encourage patients to talk about these experiences to enable a better dying process.
Acknowledgements:
We would like to thank all members of the Camden Palliative Care Team who gave their time so freely to help with this study. We would also like to thank members of the Camden Primary Care Trust Ethics Committee staff who held our hands throughout the endless process of obtaining ethical approval. Our thanks are also due to Gill Edkins who kindly typed the transcripts for us.
|