Deathbed phenomena reported by patients in palliative care: clinical opportunities and responses

Abstract

Over many decades and across many cultures and disciplines, the scientific literature reports unusual and hard to explain phenomena at the end of life. In the palliative care literature these reports are often anecdotal (Nelson, 2000), poorly understood or even treated just as hallucination (Morse 1994). In practice though, many health professionals have heard accounts from ill and dying patients of difficult to explain events (Pflaum and Kelley 1986, Wimbush and Hardie 2001, Mazzarino-Willett 2010) and while health professionals need also to recognise hallucinations arising from delirium, dementia or other neurologic or psychiatric disorders, underlying causality for these experiences may not be obvious or attributable. We have adopted the term Death Bed Phenomena (DBP) described here by Brayne and colleagues (2006, Page 17): “death may be heralded by deathbed phenomena such as visions that comfort the dying and prepare them spiritually for death” although these unexplainable accounts range from seeing dead relatives, hearing or feeling “other worlds” (Fenwick and Brayne, 2012), a significant dream, or patients being aware of the time of their own death. Patients and carers can be reluctant to discuss or divulge these phenomena for fear of being labelled ‘mad’ (Barbato et al, 1999) and health professionals (professionally trained and primarily educated in biomedical, scientific or rational models and ways of thinking) can find this a perplexing issue leaving them unsure how to respond to their patients’ stories and accounts (Brayne et al, 2006). In a quest to understand the clinical potential around these phenomena, we undertook this systematic review of the literature, with a specific focus on the palliative care population for whom death is an expected and foreseeable event due to progressive illness. While postulations on possible causes of these extraordinary end of life phenomena can be fascinating to read (Blanke, 2004), such phenomena are real for those who experience them. “Assumptions about their origins and credibility can alienate” patients and their families “at a critical time in their mourning or dying” (Barbato et al, 1999). Like others (Brayne et al 2006, Fenwick and Brayne 2011), Barbato and colleagues (1999) raise the potential within our professional role to normalise the experience and encourage the patient to find solace and emotional and spiritual wellbeing. In an effort to understand more fully these phenomena and their impact, health professionals, sociologists, psychologists and others have explored patient accounts of difficult to explain events and occurrences. Studies describing deathbed phenomena (DBP) (Barrett 1926, Sartori 2010) and near death experiences (NDE) (Morse 1994, Alvarado 2006, Bell et al 2010) emphasise the supportive spiritual potential of DBP (Ethier 2005, Fenwick and Brayne 2011), suggest additional therapies to further interpret DBP (Iordache and MacLeod, 2011), and put forward specific approaches for children and adolescents who experience NDE (Bell et al, 2010). DBP has been distinguished from NDE with the latter usually describing an unusual event or experience preceding an unexpected or accidental near death, or reported after successful cardiopulmonary resuscitation. While the nomenclature and definitions of DBP are developing in the literature, a comprehensive review about these occurrences reported by patients in a palliative care context is not available. DBP may be of especial significance in this population where cure is not possible and death at some point is a foreseeable event.