Leslie Burke Loses Legal Appeal for Food and Water While Dying


As this link says, it was just ruled in Britain that a man can’t make a future decision on his own behalf to stay fed and hydrated after he loses all capacity for voluntary movement.

Outside the courtroom, Burke told the Yorkshire Post: “A doctor is not allowed to refuse me food and water while I remain competent.”

“But what is the definition of competent? When do I become an incompetent person? Is it when I am no longer able to communicate?”

“For those people who feel like I do there was no good news at all today,” he said.

This kind of decision is not new or unique. In the United States, there are many states that have “futile care” policies that can override the wishes of patients or their appointed decisionmakers. And people die on the basis of these policies every day. This trend is not just “no good news at all…” it’s terrifying on a scale that few people comprehend.

Put bluntly: Every time I have to go to the hospital, for anything, no matter how routine, I end up having to fear for my life. This fear cannot be explained away as anything other than a reaction to systemic and life-threatening prejudice. I’m scared because I can’t speak communicatively and hospitals have been known to remove or deny the importance of my communication equipment. I’m scared because one of my vocal tics, regardless of mood, is “Kill me!” I’m scared because I don’t always have voluntary movement and have sometimes been presumed dead by emergency responders. I’m scared because I’ve experienced attempted murder in a place that called itself a hospital. I’m scared because my decisionmakers, while clearly defined as having power of attorney, aren’t always going to be listened to.

I have as much legal preparation for my wish to remain alive as is possible. My Protective Medical Decisions Document was carefully crafted according to California law and is valid anywhere in the country. I have durable power of attorney forms that name staunchly anti-euthanasia people including one who’s been involved with Not Dead Yet. But if doctors are legally allowed to assume they know what the quality of my life is or should be before they get to kill me, then no amount of protection will stop them. And if my ability to communicate with them is compromised, they may one day be allowed to make decisions against my wishes which are all well laid out in writing and communicated into the future. Communication into the future doesn’t appear to count for the British court system.

I’ve lived without being able to communicate in a way that other people could understand. I’ve lived without being able to move. I’ve lived without being able to understand or interact with much of my surroundings. I’ve lived as a devalued kind of person while other people, who would not in any way have been punished for it and who appeared to believe I was mainly using up resources that could have been given to others, tried to kill me. Three guesses which one scares me the most.


About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Developmentally disabled, physically and cognitively disabled. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died in 2014 and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

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