Thursday, 25 October 2012

Death Bed Visions Study......................

For Professionals

Death Bed Visions Study

eQuestionnaire on Deathbed Visions
- A web-based investigation using online research tools to study the prevalence, phenomenology and impact of End of Life Experiences (death bed visions)
You can participate at any time by downloading the following two questionnaires (these are in word format) or you can read below for more information
Questionnaire One
Horizon Research Foundation
Questionnaire Two
Horizon Research Foundation

Introduction - What are Deathbed Phenomena (visions)?
Deathbed Phenomena are the range of experiences, perceptions, events and other phenomena reported by those close to a dying person (close either in terms of physical proximity or emotional intimacy), which appear to be of a paranormal nature.
The most often reported deathbed phenomena are what have become known as 'take-away' visions, in which the dying person reports seeing dead relatives, religious figures or others who come to collect or accompany them through the dying process. These experiences can positively transform the person and their experience of dying, and may result in a marked change of affect, such as peace, calmness, elation, joy and, rarely, fear. Occasionally the carers at the bedside may report seeing the same vision as the person dying.
Both carers and the dying also sometimes talk about experiencing perceptual phenomena such as heavenly music, or describe a radiant white light, which envelops the dying person and may spread through the room and involve the carer as well. The quality of the light is described as surrounding those who experience it with love.
Some people who are dying report the sensation of transiting back and forth between their present existence and a new reality.
A further group of reported deathbed phenomena are unusual coincidences where, for example, family or friends of the person who is dying, at some distance from the deathbed, report that the dying person has visited them at the hour of death. In some cases they did not even know that the person was ill
Literature review
Death bed phenomena (DBP) are frequently described in the lay literature, as reviewed by Osis and Haraldsson. In fact, anecdotal evidence dating back to the nineteenth century suggests that DBP have been common throughout history and across different cultures.
Over the last few decades there has been revewed interest in DBP and the dying process, initially due to to Dr Elizabeth Kubler Ross,'s work on death and dying. She first raised public awareness of the dying process in her paper 'What's it like to be dying', published in the American Journal of Nursing in 1971. She believed that patients knew they were dying without being told, and so felt it was important to examine the experiences of the dying around the time of death. In the same year, Dewi Rees conducted research into 227 widows and 66 widowers on the sense of presence of deceased partners. Half experienced hallucinatory visions of their dead spouse, which were considered both normal and comforting to the bereaved.
Later in the same decade, Greeley and McCready found that 27% of participants in a national survey in the USA replied in the affirmative to the question: 'Have you ever felt that you were really in touch with someone who has died?', while Osis & Haraldsson's survey into deathbed visions, questioning doctors and nurses about their experience of the dying reported that deathbed phenomena did occur although only a minority of the physicians and nurses they questioned said they had been told about them. They give a number of case histories of the dying having seen deathbed visions, transiting to a new reality, and deathbed coincidences. They made the important point that these phenomena were not related to drug hallucinations and that they did occur in clear consciousness. They did not find evidence to support the view that they were just confused pictures from a dying brain and suggested that they were better explained by a transcendent view of the dying process. . . .
More recently still, Heyse-Morse discusses spiritual care of the dying and the bereaved, drawing on the work of Callanan and Kelly, two nurses who noted how some patients develop a special intuition that they were about to die. Berger also argues that death is more than a medical, legal or social event, and that spiritual, metaphysical and paranormal aspects should also be given greater emphasis in planning and delivering care for the dying person.'
Barbato et al published a paper 'Parapsychological phenomena near the time of death' in the Journal of Palliative Care in 1999, suggesting that DBP are not uncommon, particularly amongst the relatives of the deceased. However, they asserted the reason why many are not recorded is a lack of awareness about these phenomena, and/or an unwillingness of those who witness or experience them to disclose through fear of ridicule, or dismissal. It was also considered that mainstream palliative care journals and medical journals might find such subject matter too fringe or reject it because anecdotal evidence does not meet tight scientific or rational guidelines. Una McConville conducted an in-depth literature review of DBP in her Masters thesis, entitled Ways of Knowing: Accounts of 'sense of presence' experiences and deathbed visions 1969-1999. Supporting the idea that disclosure of DBP experiences is often influenced by interpersonal and political dynamics, her analysis indicates that the vast majority of accounts of DBP come from family carers and nurses, and very few from doctors.
Deathbed Phenomena Research Umbrella
It has been evident for some time that deathbed phenomena have been poorly researched and that neither their prevalence, phenomenology, significance, nor their implications for palliative care have been seen as topics worthy of inclusion in educational programmes for carers of the dying. This suggests not only an opportunity for some seminal research into the area of DBP as a whole, but also a clear training need for staff working with the impact of deathbed experiences and a need for greater understanding of the nature of these phenomena.
An early pilot study carried out by our group was successful in opening up all of these areas and suggesting the direction of further research. Questionnaires were given to nine members of the UK national health service (NHS) Trust Palliative Care Team, including doctors, clinical nurse specialists and an occupational therapist. The results were striking:
  • Deathbed visions, deathbed coincidences and other phenomena were all reported.
  • These phenomena were considered to be part of the dying process.
  • Conversations about them were considered a common discourse amongst the dying.
  • A clear distinction could be made between deathbed visions, on the one hand, and hallucinations due to drugs on the other.
But echoing the themes identified in the literature review above, most members of the team, despite being aware of these phenomena and aware that they were extremely important for the dying person, felt:
  • uncertain about the significance of DBP.
  • ill-prepared to support patients with these experiences
  • unable to respond appropriately.
  • reluctant to discuss these DBP amongst themselves or with others outside the team.
In order to appreciate the full range of DBP, a larger sample is required, replicating the pilots undertaken to date. It is believed that it would also be helpful to collect data from staff who have had a more thorough preparation in responding to such experiences, so that we can be more confident that they are gauging accurately the prevalence and phenomenology of DBP amongst those they care for. And we believe that accounts from relatives would be helpful in confirming (or otherwise) the prevalence figures we have established amongst staff.
Accordingly, we intend to carry out further retrospective studies in hospices and nursing homes in southern England and hospices in Holland. If these are as successful as our pilots we should have over 100 respondents amongst those who deal with the dying every day and from relatives. We plan also to carry out a one year prospective study of those carers who have been interviewed in some of the retrospective studies and as a result have a better sense of the range of DBP and importance of communicating about them with the dying and with colleagues. This will give us a much more detailed picture of the true occurrence and features of DBP, as well as the effect DBP have on those who work with the dying and the extent to which learning about DBP affects the frequency with which staff encounter them and their ability to respond appropriately.
We intend to complement these studies with the current research project (the eQuestionnaire on Deathbed Phenomena), which will collect similar data both from family members and carers, utilising the power of the Internet to extend the sample. Respondents will be a self-selecting sub-group of the general population, which has certain methodological drawbacks, but which we anticipate will be more than balanced by the sheer volume of data we are able to collect.
Once all the above-mentioned studies are complete, we will be to assess more accurately the four types of deathbed phenomena identified by previous research (take-away visions, deathbed coincidences, transiting to new realities, and visions of light). Given what we have learnt from our Camden pilot about DBP as part of a continuum of 'dying-language', we will be able to elaborate more confidently and clearly what is the normal range of DBP. We will also be in a position to describe the impact of medication on dying patients who are hallucinating and thus the difference between these drug induced hallucinations and DBP. And we will be able to assess the impact of awareness-raising work about DBP with staff on their ability to respond to those they are caring for.
The data collected will be used as a foundation for a nation-wide prospective survey, the aim of which will be to describe optimum ways of providing support, education and models of best practice to carers of the dying.
Aim, design and sample of the eQuestionnaire on Deathbed Phenomena
This web-based study is a crucial part of the research project as a whole. Although there are some methodological drawbacks from the self-selecting nature of the sample, it will allow us to collect much more data from a much broader cultural sample. In particular, the data we expect to collect will ensure we are accurately reviewing
  • the full range of deathbed phenomena
  • the degree of impact of DBP on the carer who is with a dying person while they experience these phenomena
  • how easy carers find it to talk about such experiences, or whether they feel they will be laughed at or ridiculed if they talk about the experiences in an ordinary social setting
  • how far these experiences are shaped by cultural background
The questionnaires are similar to those used in the hospice study. This will allow us to compare hospice data with this wider sample. The questionnaire will however include more questions on the cultural background of the people involved, and the relationship of the carer to the dying person.
The sample will come from respondents to the questionnaire on the Death Experience Research Site. We hope this will be multi-cultural and will contain a wide variety of experiences. We hope to get over 1000 respondents.
The researchers involved with this study are Dr Peter Fenwick, Ben Davidson, Sue Brayne and Hilary Lovelace.

Horizon Research Foundation is a Registered Charity No. 296655 in the UK
Mailpoint 810, Level F, Southampton General Hospital, Tremona Road, Southampton, Hampshire SO16 6YD, United Kingdom. Tel: +44 (0) 2380 001016

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