A High Court judge has ruled that doctors may withdraw life support from a 66-year-old man suffering from what is now called a prolonged disorder of consciousness. Mr Justice Hayden granted declarations that continued ventilation together with clinically assisted nutrition and hydration were no longer in the patient’s interests.
After a heart attack that would have probably been fatal if he had not already been in hospital, the patient was found to have a significant hypoxic ischemic brain injury. Doctors said he did not demonstrate any features of awareness or volitional purposeful activity.
This condition has been, historically, categorised as a “persistent vegetative state”. It is a term which has been used in the case papers and in evidence. It excites a great deal of distress in families of patients in this condition. I watched as this family recoiled from the term. It has a dehumanising connotation which is, in my view understandably, perceived as offensive to the dignity of the patient…
These days, the consensus amongst the medical profession is that prolonged disorder of consciousness is a continuum which it is unnecessary artificially to demarcate by labels. [This patient], in the view of all the doctors involved in his treatment, is at the lowest point on the spectrum of prolonged disorders of consciousness. That is all they are required to say on this point.
Given the wide medical consensus that I have referred to, the time has surely come to consign the phrase “persistent vegetative state” to the past.
The patient’s seven children believed their father had a greater level of awareness than was understood by the doctors who are treating him, Hayden explained. Ultimately, his family hoped for a degree of recovery that the medical evidence simply could not sustain.
“They go further than this,” continued the judge. “They believe in the capacity of Allah to perform miracles. They further believe that questions of life and death lie entirely in the hands of Allah and not a doctor or a judge.”
Sitting in the Court of Protection, Hayden paid tribute to the patient, referred to in the judgment only as XY:
He was, for many years, a chef who thoroughly enjoyed his work. He took pride in the quality of the dishes he prepared. He was fastidious about the quality of his food and grew his own vegetables from an allotment which he carved from unpromising ground over many years. Many of the vegetables he grows are seeds that he propagates himself, having bought them abroad, usually in Bangladesh. The food he prepares for his family is a manifestation of his love for them. He was aware of each of his children’s favourite dishes and would prepare them, unbidden, when he thought they were needed. His delight in his thirteen grandchildren has been every bit as great as that in his children.
Treatment was futile, said the judge. It generated harm, not benefit. “With the deepest of sympathy to the family,” he concluded, the court would make the declarations requested by the Whittington Health NHS Trust in north London.
The hearing concluded a week ago and Hayden published his written judgment yesterday afternoon. There was no mention of any appeal and it is not known whether the patient is still alive.
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.