Highlights
Case:
Mr R, a twenty-seven-year-old patient, received the diagnostic of depression when aged fifteen. When Rita first met Mr R, he self-reported more than 30 ineffective and/or poorly tolerated medication trials and an ineffective course of electroconvulsive therapy which have lead him to seek last recourse treatment. During their first meeting, Rita suggested to Mr R to consider the possibility of enrolling in a new experimental DBS trial for TDR, where she sits as co-researcher with multiple colleagues, under the leadership Prof S. One week following Rita first meeting with Mr R, he consulted Prof S to undergo an experimental usage of DBS targeting TRD. During the consultation, Mr R was accompanied by his brother. Prof S advised Mr R that DBS was an experimental treatment potentially targeting TDR symptoms. Prof S says that he advised Mr R that the potential risks of the DBS surgery include death, permanent disabling stroke, infection of the brain or the IPG, seizure disorder, and reversible changes in mood/personality. Mr R was also told that DBS therapy may not help his symptoms. However, retrospectively, Mr R’s brother disputes that Mr R was told about reversible changes in mood and personality.
The informed consent signed by Mr R stipulated: “The doctor may [...] withdraw you from trial at any time if he/she considers this to be in your best interest.” The surgery was performed without incident one month later, it was uneventful, and Mr R’s surgical wounds healed well. Mr R had inserted bilateral stimulators within the subcallosal cingulate cortex.
Thursday, one day after the surgery, Mr R indicated to Rita that he experienced some headache, and commented “I feel like I am who I am now, but it's not the me that went into the surgery.” These feelings of self-estrangement were experienced with suicidal thoughts and that for the past day Mr R had thought about nothing else but ending things. He reported wanting to make sure it was permanent and that this was the only reason he had not acted on his thoughts. Accordingly, Rita indicated in her records a number of sources for the distress, including:
• Mr R was experiencing severe pain as a feature of his brain surgery. This was not well controlled as his DBS device which had only recently been reactivated and was not yet functioning at optimal levels.
Two days later, Mr R’s brother dropped Mr R off at the front of the Hospital and saw him go inside the administration area. Mr R did not go to the Hospital but instead checked into the Summit Apartments, an adjacent hotel to the Hospital. This occurred at approximately 10:20am. Around 11h30, Mr R’s brother received a text message from Mr R. This text message suggests that:
• Mr R’s main concern was his pain;
• Mr R considered he was put back on TRD’s medication without appropriate supervision and proper pain control;
• The treating team did not believe him or properly listen to him;
• If the possibility of such pain had been explained to him, he may not have had the operation; and
• His death could have been prevented had his medical advice and treatment been different.
Just after 11.30am, an eyewitness reported seeing Mr R jumped from the balcony of his room (8th floor).
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