How many patients in a prolonged disorder of consciousness might need a best interests meeting about starting or continuing gastrostomy feeding?. (November 2018)

• Record Type: Journal Article
• Authors: Wade, Derick T
• Is Part Of: Clinical rehabilitation. Volume 32:Number 11(2018)
• Page Start: 1551
• Page End: 1564
• Publication Date: 2018-11
• Subjects: Prolonged disorder of consciousness -- incidence -- prevalence -- aetiology -- care location; Medical rehabilitation -- Periodicals; 617.03
• DOI: 10.1177/0269215518777285
• Languages: English
• ISSNs: 0269-2155

Abstract

Objective: To estimate the number of people in a prolonged disorder of consciousness (PDOC) who may need a formal best interests decision-making process to consider starting and/or continuing life-sustaining treatment each year in the population of a developed country. Method: Identification of studies on people with a PDOC giving information about incidence, and/or prevalence, and/or cause, and/or location of long-term care. Sources included systematic reviews, a new search of MEDLINE (April 2018), and a personal collection of papers. Validating information was sought from existing data on services. Results: There are few epidemiologically sound studies, most having bias and/or missing information. The best estimate of incidence of PDOC due to acute onset disease is 2.6/100, 000/year; the best estimate of prevalence is between 2.0 and 5.0/100, 000. There is evidence that prevalence in the Netherlands is about 10% of that in other countries. The commonest documented causes are cerebral hypoxia, stroke, traumatic brain injury, and tumours. There is some evidence suggesting that dementia is a common cause, but PDOC due to progressive disorders has not been studied systematically. Most people receive long-term care in nursing homes, but a significant proportion (10%–15%) may be cared for at home. Conclusion: Each year, about 5/100, 000 people will enter a prolonged state of unconsciousness from acute onset and progressive brain damage; and at any one time, there may be 5/100, 000 people in that state. However, the evidence is very limited in quality and quantity. The numbers may be greater.