Deathbed Experiences and Hospice Studies Research Project

End of Life Studies

Proposed Project for incoming full-time visiting scholar or visiting research fellows:

Here is an example of a project for which we need qualified visiting researchers and appropriately designated funding for the project:

This proposal was developed and written by our esteemed UVA DOPS colleague Emily Kelly, PhD.

Please Contact Us if you are in a position to seek out an unpaid visiting researcher situation here at UVA DOPS, fund your research and/or are able to use your sabbatical to undertake the project described below.

Deathbed Experiences and Hospice Studies Research Project

Numerous anecdotal reports have indicated that deathbed and hospice settings are replete with spontaneous unusual experiences that are profoundly relevant to the question of the survival of consciousness after physical death. Such experiences include deathbed visions of the dying person, apparent after-death communications to bereaved family and friends, and an unexpected revival of mental clarity among dying persons who have organic brain damage caused by dementia or other diseases. Despite numerous reports from family members and healthcare workers alike, little systematic research has been done in this area.

We are proposing a two-part research project on end-of-life experiences of dying patients and their families. The first part will focus on patients enrolled in hospice and palliative care, most of whom will be in their homes, but others of whom will be in in-patient settings. The second part will be an ongoing web study designed to solicit reports of end-of-life experiences of patients and their families.

Hospice Survey: There will be three major objectives to this research, all intended to help us evaluate the hypothesis that consciousness is not wholly dependent on – let alone produced by – the brain, but instead operates in conjunction with the brain as an evolutionary adaptation to the conditions of physical life:

First, we will obtain basic and detailed information about the nature of visions and other unusual experiences happening to dying persons, including

‒ What is the incidence of such experiences among hospice patients?

‒ What is the content or nature of the experiences? If the vision is of a person, what was the nature of the relationship between that person and the patient? Was the experience recurring?

‒ To whom do such experiences occur (as shown by factors such as age, gender, religious or spiritual background, education, and prior mystical, paranormal, or hallucinatory experiences)?

‒ Under what conditions do such experiences occur (considering the patient’s physical condition, cognitive state or lucidity, emotional state, state of consciousness, medical diagnosis, medications, and proximity to actual time of death)?

Second, based on the above factors, and especially the patient’s physiological condition and the presence or absence of drugs, we will attempt to distinguish visions possibly relevant to the question of survival after death from pathological hallucinatory experiences. For example, preliminary observations suggest that drugs may in fact inhibit, rather than produce, deathbed visions and related phenomena. Similarly, preliminary observations also suggest that drug-induced hallucinations are quite different in nature and in impact on the patient than are deathbed visions, again perhaps supporting our hypothesis that so-called hallucinations can be of two different kinds, some pathological and resulting from brain dysfunction, others of a more positive nature and resulting from the loosening of the brain’s constraint of consciousness.

Third, we wish to learn about any visions or other apparently paranormal experiences of other persons, both while the patient was in hospice care and after the patient’s death, concentrating on investigating in detail experiences relevant to our hypothesis, namely, those in which a person has obtained information, or influenced a physical object, in some way other than by the usual sensorimotor processes.

This proposed research project would be carried out in conjunction with the coorperation if a local hospice organization. With the help of hospice personnel, we will explain the nature of our research to every patient who enters at-home hospice care, the 8-bed in-patient hospice home in Charlottesville, and the 10-bed Center for Acute Hospice Care at UVA. We will explain the nature of the research to patients and their caregivers only in the broadest terms necessary, as we do not wish to suggest in any manner what, if anything, they might experience. All patients who, with the agreement of their primary caregiver, are able and willing to participate will be followed from the time of their enrollment in hospice until their death. A DOPS researcher dedicated full time to this study will check in weekly with members of each patient’s hospice team, especially nurses, aides, and at-home volunteers, as well as with the patient’s primary caregiver, to learn about any relevant experiences of the patient and of others. Whenever relevant experiences are reported, the DOPS researcher will interview all persons who may have witnessed the event, including patients who are able and willing to talk, not only to learn the nature of the experience, but also to determine the patient’s physical, cognitive, and emotional state at the time of the experience. The DOPS researcher will also obtain regular (weekly) information about the physical, cognitive, and emotional state, as well as medications, of all patients enrolled in the study, whether or not they have had a relevant experience.

Finally, at 3 months and again at 12 months after the patient’s death, the bereaved family will be contacted to ask about any subsequent experiences that they or others may have had. They will also be encouraged to contact a DOPS researcher at any time they wish to report or talk about these experiences and our research.

Web Study of End-of-Life Experiences

Although longitudinal surveys of dying patients in a variety of settings will be our primary focus, we would also like to build up DOPS’s general case collection of such experiences. Unlike a survey, which systematically examines members of a specified population, case collections usually result from self-reports by people who have read or otherwise learned about a researcher’s particular interests. We would like to develop a more sophisticated web-based tool for learning about experiences of this sort from the general public. Although we would almost certainly not be able to obtain the level of medical or detailed information from such a case collection that we can from a targeted survey project, we nonetheless believe that amassing a large collection of such experiences can be a useful supplement to our detailed survey. Moreover, we will make every effort to interview (or otherwise follow up with) people who report experiences that seem especially pertinent to the question of the relationship of consciousness and brain.

This proposal was developed and written by UVA DOPS researcher Emily Kelly, PhD.

Please Contact Us if you are in a position to seek out an unpaid visiting researcher situation here at UVA DOPS, fund your research and/or are able to use your sabbatical to undertake the project described above.