By Liz Townsend
A British man suffering from a degenerative brain disorder petitioned a court to protect him from starvation and dehydration once he becomes incompetent. Leslie Burke, 44, is concerned that medical guidelines giving doctors the power to withdraw treatment from incompetent patients could be applied to his case despite his wishes.
Burke has cerebellar ataxia, a progressive condition like multiple sclerosis that leads to a loss of motor control. Diagnosed 12 years ago, Burke now has to use a wheelchair, and the condition has begun to affect his speech, Press Association (PA) News reported.
"I am doing this because I may well end up in the position where I need artificial hydration and nutrition," Burke told reporters before the court hearing, according to the Daily Telegraph. "Physically, my body will deteriorate but I will be mentally alert the whole time.
"I may not be able to communicate with the doctors and it takes two to three weeks to die when hydration and nutrition is withdrawn, and I will be acutely aware of that every single day and, physically, not be able to do anything about it."
British General Medical Council (GMC) guidelines state that doctors can withdraw food and fluids from a patient, even if death is not imminent, if the treatment would "cause suffering or be too burdensome in relation to the possible benefits," the Telegraph reported.
The High Court in London agreed to a test case hearing to determine whether the GMC guidelines are lawful and appropriate. The three-day hearing began February 26.
Burke's counsel, Richard Gordon, argued before Mr. Justice Mundy that the guidelines give doctors the "colossal power of life and death," according to the Telegraph. He contended that "clinicians purporting to act in their best interests" could withdraw necessary starvation and hydration from patients like Burke who may become unable to speak for themselves.
Counsel for the GMC argued that, although the issue is "important" and needs to be discussed, Burke's case itself is not based on any specific threat. "There is no suggestion by any doctor that they believe the guidance issued by the GMC might encourage or permit them to withdraw artificial nutrition or hydration from Mr. Burke," Dinah Rose told the court, PA News reported. Rose added that the court was being asked to address "hypothetical issues of law."
To those with disabilities, however, such "hypothetical issues" are life or death ones. The Disability Rights Commission (DRC) said through a spokeswoman that the GMC guidelines need to be changed, since they rely too much on a doctor's perception of factors beyond a medical diagnosis.
"The DRC believes these factors are subjective and may reflect a doctor's personal opinion about the quality of life of a disabled person," the DRC's spokeswoman told the Independent. "There should be a much higher threshold in place to be used when a decision is made whether to withdraw treatment from a person."
Justice Mundy did not render a decision immediately but said he would announce a judgment "in due course," according to PA News.