G Model AGG-2140; No of Pages 7 Archives of Gerontology and Geriatrics xxx (2009) xxx–xxx Contents lists available at ScienceDirect Archives of Gerontology and Geriatrics journal homepage: www.elsevier.com/locate/archger Comfort for the dying: five year retrospective and one year prospective studies of end of life experiences Peter Fenwick *, Hilary Lovelace, Sue Brayne Kings College Institute of Psychiatry and Department of Neuropsychiatry, Southampton University UK, Neuropsychiatry Office, 42 Herne Hill, London SE24 9QP, UK ARTICLE INFO ABSTRACT Article history: Many cultures have reported end-of-life experiences (ELEs) as part of the dying process. However, few Received 22 April 2009 studies have examined the mental states of the dying in the weeks and days before death. Following an Received in revised form 22 September 2009 ELE pilot study with a palliative care team, 38 nurses, doctors and end-of-life carers from two hospices Accepted 2 October 2009 and a nursing home took part in a 5-year retrospective followed by a 1-year prospective ELE study. Interviewees’ reports (first-hand and second-hand accounts from relatives, patients and residents) Keywords: suggested that ELEs are not uncommon. ELEs included deathbed phenomena (DBP) such as visions, Deathbed phenomena coincidences and the desire to reconcile with estranged family members. These experiences seemed to Deathbed visions comfort both the dying and the bereaved. Interviewees described other phenomena such as clocks Deathbed coincidences End-of-life experiences stopping synchronistically at the time of death, shapes leaving the body, light surrounding the body and Training of the personnel for deathbed care strange animal behavior. Interviewees confirmed that ELEs differed from drug-induced hallucinations and occurred in clear consciousness. Most expressed concern about a lack of specialist ELE training and education and recommended that ELE modules be included in their training courses. ELEs provided comfort and hope for the dying and consolation for the bereaved. Further research is required to find the true prevalence and range of ELE phenomena. ß 2009 Published by Elsevier Ireland Ltd. 1. Introduction The death of a patient and the grief of the relatives is part of general practice experience. In our survey we found that many The ELE in the form of deathbed-visions has been widely people who had witnessed or experienced these end-of-life reported, and is found in biographies and literature from all ages phenomena felt uncomfortable about discussing them with their and in many cultures, for example, the Tibetan Bardo (Sambhava, doctor and that something which was intensely meaningful to 1994), the Egyptian Pert Em Hru (Faulkner, 1973), and as wood-cut them was often dismissed as insignificant. illustrations of the European mediaeval Ars Moriendi, The art of Research conducted by O’Connor (2003) with end-of-life care dying (Aries, 1974). Traditionally these end-of-life visions, such as nurses suggests that they find ELEs neither rare nor surprising. And those reported by Julian of Norwich in her major work, Sixteen yet our own research has found that even amongst palliative care Revelations of Divine Love (Norwich, Julian of c. 1342–1413), were professionals, ELE training is lacking and many palliative care associated with the spiritual preparation of the soul for death and nurses feel inadequate when dealing with such spiritual issues the afterlife. More recent anecdotal accounts from nurses and (Katz and Payne, 2003; Kellehear, 2003). Many people now die in doctors suggest that ELEs consist of a much wider range of hospital but unfortunately, nurses have neither the time nor the phenomena than purely deathbed-visions (Barratt, 1926; Osis and training to deal adequately with this very important aspect of the Haraldsson, 1997). These phenomena include the ability to transit dying and grieving process. to and from other realities, usually involving love and light (Kubler Ross, 1971), coincidences around the time of death involving the 2. Limited research into the mental state of the dying dying person appearing to a relative or close friend who is not present at the time of death and a need to settle unfinished Much has been written on the practicalities of providing end-of- business such as reconciling with estranged family members, or life care. However, the British Medical Journal (Workman, 2007) putting affairs in order before death (Baumrucker, 1996). considers that research into the dying process and the mental states of the dying is often overlooked. A recent study (Kendall et al., 2007) suggests that a physician’s emotional response to death is often seen as a sign of weakness. The study also suggests * Corresponding author. Tel.: +44 207 738 5188; fax: +44 207 738 5188. that the lack of research into the dying process may be influenced E-mail address: [email protected] (P. Fenwick). by the continuing social taboos which surround death, and the 0167-4943/$ – see front matter ß 2009 Published by Elsevier Ireland Ltd. doi:10.1016/j.archger.2009.10.004 Please cite this article in press as: Fenwick, P., et al., Comfort for the dying: five year retrospective and one year prospective studies of end of life experiences. Arch. Gerontol. Geriatr. (2009), doi:10.1016/j.archger.2009.10.004 G Model AGG-2140; No of Pages 7 2 P. Fenwick et al. / Archives of Gerontology and Geriatrics xxx (2009) xxx–xxx tendency of doctors to concentrate on the survival of patients, Part 2 was a 1-year prospective study, taking place 12 months rather than help them achieve a good death. Consequently, the later with those 30 staff still employed at the three institutions. We prevailing scientific view is that ELEs, particularly deathbed felt this was necessary because we had learned from e-mails visions, have no intrinsic value, and are either confusional or received after media discussion of the phenomena, that many of drug induced. the experiences described had happened several years previously, Imhof (1996) points out that since death is not taught as a but were vividly remembered because of their comforting nature medical subject, and ‘dying right’ is not part of medical studies, this and because in many cases they helped to abolish a fear of death. It special awareness of the dying process is often ignored by those was thus important to know whether, although the period of the who care for the dying. He considers that ‘‘Although all of us will retrospective study was limited to 5 years, many of the experiences die, hardly anyone is prepared, or is preparing to die right’’. reported by carers had in fact pre-dated that time and thus gave a falsely raised frequency for these phenomena. We hoped the 3. ELE research study prospective study would help us obtain a more accurate estimate of the prevalence of end-of-life events. Every interviewee in the Our present research suggests that ELEs fall into two distinct retrospective study was therefore asked to keep a diary for the categories: (i) transpersonal ELEs, and (ii) final meaning ELEs following year and to note all the ELEs told to them by either (Brayne and Fenwick, 2008). patients or relatives. Comparison between the retrospective and prospective studies 3.1. Transpersonal ELEs also enabled us to gauge whether there had been a shift in the attitude of the interviewee or the culture of the organization Transpersonal ELEs possess ‘other-worldly’ or transcendent towards acceptance of ELEs. qualities and cannot easily be explained by the pathological The data collection consisted of a questionnaire and a tape- process of dying (Wallace, 2000). Transpersonal ELEs include: recorded interview, providing first-hand and second-hand Deathbed visions, e.g., of deceased family members, coming to accounts (recounting ELE stories from relatives). All the inter- ‘take the dying person away’ (take-aways), or powerful existential viewees were assured of confidentiality, and gave their informed dreams involving deceased family members or pets that help the consent. Ethical approval for the study was granted by South- dying person to let go (Kubler Ross, 1971; Hallum et al., 1999). ampton University and Camden Ethics Committee (LREC). The seeming ability to transit to and from other realities before death, often involving love and light, as a way of preparing to let go 3.4. Quantitative data collection (Fenwick et al., 2007; Fenwick and Fenwick, 2008). Coincidences which occur around the time of death, involving The questionnaire had been piloted with the CPCT for validity the appearance of the dying person to a close relative or friend who and then modified for the three full-scale studies. The ques- is not physically present (Kubler Ross, 1971; Fenwick and Fenwick, tionnaire was divided into three sections and involved 47 2008). questions. Section 1 provided demographic information, including Phenomena which occur around the time of death such as years working with the dying. Section 2 asked about the clocks stopping, strange animal behavior, or lights and equipment interviewees professional observations on ELES, including the turning on and off (O’Connor, 2003; Betty, 2006). effects of medication. Section 3 studied the impact that ELES may have had on the spiritual or religious beliefs of interviewees and on 3.2. Final meaning ELEs their training experiences and needs. Interviewees were invited to respond to each question by ticking boxes which scaled 1–5 from In contrast, final meaning ELEs appear to have substantive strongly agree to strongly disagree, or yes/no boxes. Statistical qualities, firmly based in the here and now, often prompted by analysis was carried out using frequencies and the marginal profound waking dreams, or dreams which help the person to homogeneity test, SPSS, to note significant differences between the process unresolved business so they can let go and die peacefully.