Long-Term Outcome after Vegetative State Due to Near-Drowning and Quality of Life of the Families

Background: Discussions between the teams of emergency medicine, intensive care, early-phase rehabilitation and palliative care concerning children in vegetative state lack information about the long-term prognosis and quality of life (QoL) of their families.

Methods: At two different time points, we investigated long-term outcome and QoL of the families of 85 children, who were in vegetative state 4 weeks after a near-drowning event, and who were transferred to our institution for early-phase rehabilitation in the years 1986–2001: Assessment 1 was performed in 2001 as anonymous questionnaire with 77 items regarding health and psychosocial aspects of QoL; assessment 2 was performed in 2010–2011 as structured telephone interview (GK) with both parents separately concerning both outcome and QoL; additional interviews were performed with one parent of children who survived concerning outcome (MH). Ethical approval was obtained by the Bavarian State Medical Association.

Results: Response rate (RR) of assessment 1: 53% (45 questionnaires); follow-up: 6 months to 15 years after the accident (mean: 5 years). RR in Assessment 2: 53/85 children (62%) and 99 parents with a mean follow-up of 15 years. Outcome (evaluated in assessment 2; levels according to Remi-Pro): 14 children had died (26%), 5 were in sleep-wake level (9%), 10 in perception level (19%), 13 in communication level (24%), 2 in independence level (4%), 4 in group level (7%), and 5 in participation level (9%). Many parents reported massive and persisting feelings of guilt. When asked whether it would have been better that their child had died immediately after the accident despite resuscitation, 58 / 99 parents (59%) answered “no.” Different aspects of QoL among the parents correlated with outcome and feeling of guilt, but—independent of the outcome in their children—the majority of parents reported a high level of satisfaction (87% “very” or “rather” satisfied) with their lives.

Discussion and Conclusion: Our results are in accordance with other investigations in chronic diseases of a non-linear relationship between physical health status and QoL. These results can be useful for the individual planning of neurorehabilitation and goal setting definition in children with severe acquired brain injuries and can have an impact on ethical aspects in medical decision making.