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.
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