The term "unresponsive wakefulness syndrome" was coined more than a decade or so ago to replace "permanent/persistent vegetative state" - though I'm doubtful that changing the name makes a significant difference to family distress about the condition and its implications for the person so diagnosed. Historically, since the landmark judgment in Anthony Bland, left in a "persistent vegetative state" after the Hillsborough disaster, judges were willing to authorise withdrawal of life-sustaining treatment in a person's best interests from patients with that diagnosis, but not from others in very similar ("minimally conscious") states who sometimes showed flickers of awareness of themselves and their surroundings (e.g. by tracking someone around the room with their eyes). Over the last decade or so that's changed, with a growing recognition that the diagnostic distinction between the persistent vegetative state and minimally conscious states may not be reliable (hence the "prolonged disorder of consciousness" continuum) and that it may not be in a person's "best interests" (the relevant test for giving treatment under the Mental Capacity Act 2005) to receive life-sustaining treatment in either condition. In my view, a judge's opinion on diagnostic nomenclature is rather less important in the scheme of things than are the significant ongoing concerns - which regularly arise in court hearings - about (for example): covert consciousness; patients' experience of pain; whether or not clinically assisted nutrition and hydration is properly categorised as a "treatment" (that can therefore be withdrawn) rather than basic care; and sanctity of life and a person's "right" to receive food and water via a tube to sustain their life regardless of their diagnosis (or the terminology in which that diagnosis is couched). In my experience, changing the diagnostic terminology is often a proxy for, or even an attempt to evade, some of these more fundamental issues. The case of PC - appealing against Cusworth J's decision that treatment withdrawal was in the best interests of a woman in her 40s diagnosed as being at the lower end of a prolonged disorder of consciousness - raises some of these issues and was heard by the Court of Appeal last week. We await the judgment.
Celia Kitzinger: please allow me to acknowledge and commend you for what you do.
The term "unresponsive wakefulness syndrome" was coined more than a decade or so ago to replace "permanent/persistent vegetative state" - though I'm doubtful that changing the name makes a significant difference to family distress about the condition and its implications for the person so diagnosed. Historically, since the landmark judgment in Anthony Bland, left in a "persistent vegetative state" after the Hillsborough disaster, judges were willing to authorise withdrawal of life-sustaining treatment in a person's best interests from patients with that diagnosis, but not from others in very similar ("minimally conscious") states who sometimes showed flickers of awareness of themselves and their surroundings (e.g. by tracking someone around the room with their eyes). Over the last decade or so that's changed, with a growing recognition that the diagnostic distinction between the persistent vegetative state and minimally conscious states may not be reliable (hence the "prolonged disorder of consciousness" continuum) and that it may not be in a person's "best interests" (the relevant test for giving treatment under the Mental Capacity Act 2005) to receive life-sustaining treatment in either condition. In my view, a judge's opinion on diagnostic nomenclature is rather less important in the scheme of things than are the significant ongoing concerns - which regularly arise in court hearings - about (for example): covert consciousness; patients' experience of pain; whether or not clinically assisted nutrition and hydration is properly categorised as a "treatment" (that can therefore be withdrawn) rather than basic care; and sanctity of life and a person's "right" to receive food and water via a tube to sustain their life regardless of their diagnosis (or the terminology in which that diagnosis is couched). In my experience, changing the diagnostic terminology is often a proxy for, or even an attempt to evade, some of these more fundamental issues. The case of PC - appealing against Cusworth J's decision that treatment withdrawal was in the best interests of a woman in her 40s diagnosed as being at the lower end of a prolonged disorder of consciousness - raises some of these issues and was heard by the Court of Appeal last week. We await the judgment.
Many thanks, Celia. I commend your work here: https://openjusticecourtofprotection.org