title: Comfort for the dying: five year retrospective and one year prospective studies of end of life experiences.
abstract: Many cultures have reported end-of-life experiences (ELEs) as part of the dying process. However, few studies have examined the mental states of the dying in the weeks and days before death. Following an ELE pilot study with a palliative care team, 38 nurses, doctors and end-of-life carers from two hospices 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) suggested that ELEs are not uncommon. ELEs included deathbed phenomena (DBP) such as visions, coincidences and the desire to reconcile with estranged family members. These experiences seemed to comfort both the dying and the bereaved. Interviewees described other phenomena such as clocks stopping synchronistically at the time of death, shapes leaving the body, light surrounding the body and 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.
authors.affiliation: Kings College Institute of Psychiatry and Department of Neuropsychiatry, Southampton University UK, Neuropsychiatry Office, 42 Herne Hill, London SE24 9QP, UK. peter_fenwick@compuserve.com
authors.forename: Peter
authors.initials: P
authors.lastname: Fenwick
authors.forename: Hilary
authors.initials: H
authors.lastname: Lovelace
authors.forename: Sue
authors.initials: S
authors.lastname: Brayne
mesh_terms: D001293:Attitude to Death; D017028:Caregivers / Q000193:education; D003643:Death; D006738:Hospices; D006801:Humans; D008016:Life Change Events; D009735:Nursing Homes; D010166:Palliative Care; D010865:Pilot Projects; D011446:Prospective Studies; D012189:Retrospective Studies; D013727:Terminal Care / Q000523:psychology*; D000078329:Workforce