The mother of a 29-year-old woman who suffers from anorexia fears her daughter will die, blaming a city hospital for failing to follow treatment recommendations from the province’s expert on eating disorders.
Lorraine Ramsey said her daughter, Karleigh, who weighs 39 kilograms (86 pounds) and has autism and cognitive disabilities, has gained only six kilograms on an oral diet of mostly fruit juice and nutritional drinks since being admitted to Victoria Hospital on March 13.
However, in a letter to the hospital’s attending physician on June 13, Dr. Louis Ludwig, medical director of the adult eating disorders program at Health Sciences Centre, recommended Karleigh be tube fed, warning she could die without it.
JOHN WOODS / FREE PRESS
Karleigh was midway through high school when she suddenly cut back on what she was eating and consumed only liquids.
“I cannot watch my daughter die,” said Ramsey. “They will not follow (the) recommendations and she is at high risk of dying. The hospital is stating my daughter is refusing treatment, but she has a starving brain and anorexia. She needs help.
“Do we let people with disabilities die?”
During a short phone interview, Karleigh said she is consuming up to three drinks a day.
When asked if she would eat something solid, like pudding, Karleigh emphatically said no.
“I just want liquids.”
Ludwig said any patient at his HSC clinic who had gained only a kilogram a month would be a candidate for nasogastric tube feeding.
“I understand that she is under the public trustee, and therefore ethical decisions are no longer hers to make,” the doctor wrote in the letter shared by Ramsey with the Free Press.
“I would suggest that you contact the office of the public trustee and inform them that the regional expert in eating disorders has recommended enteric tube feeding.”
Ludwig said in the letter that it doesn’t matter whether Karleigh agrees or not with being tube fed.
“She has others making these decisions for her,” the doctor wrote.
“Please remember that the discomfort and distress that she may experience with tube feeding is significantly outweighed by the morbidity and possibility of death should the present course continue.”
“We are seeing people like this all over the world who are not getting adequate care because of this. Most hospitals aren’t able and willing to think outside of the box.”–Dr. Anita Federici
A spokeswoman for Shared Health said the agency and Ludwig could not publicly comment on Karleigh’s case, citing privacy issues.
However, she said care teams regularly manage complex and difficult cases.
“Physicians and care providers are sensitive to how stressful these situations can be for patients and their families and always assess a wide variety of factors, including ethical and clinical perspectives, to ensure the safest and best outcomes for every patient they care for.”
Eating disorders are some of the most common chronic illnesses affecting adolescent girls, according to the National Eating Disorder Information Centre.
A 2012 Canadian study found more than 113,000 people 15 and older had been diagnosed with an eating disorder.
Ramsey said Karleigh was midway through high school when she suddenly cut back on what she was eating and consumed only liquids.
Ramsey said her daughter began to develop behavioural issues and was rejected by HSC’s eating disorders program because of them. Ramsey next turned to St. Amant in hopes the agency could help with Karleigh’s autism and cognitive disabilities.
The Public Guardian and Trustee of Manitoba then began to oversee Karleigh’s care because she was an adult at the time.
A spokeswoman for the public trustee said it is appointed to make medical decisions when an adult is assessed as incapable of making them because of an intellectual disability.
“In making an informed decision, the (public trustee) will consider — without limitation — the client’s wishes, the client’s values and beliefs, and the risks and benefits of the treatment proposed by a treating physician,” the spokeswoman said.
Dr. Anita Federici, a fellow with the Academy for Eating Disorders and the clinical director of the Ontario-based Centre for Psychology and Emotion Regulation, said eating disorders are always harder to treat when there are additional conditions, including autism.
Lorraine Ramsey (right), whose daughter Karleigh has been hospitalized since March, said health care providers are not following recommendations from eating disorder experts to ensure she receives the required daily calories
“Sadly, this is not a rare situation,” Federici said. “We are seeing people like this all over the world who are not getting adequate care because of this. Most hospitals aren’t able and willing to think outside of the box.”
Federici said malnourishment for a long period could cause a variety of physical and mental effects.
“Tube feeding could be traumatizing on her. I’m not saying don’t tube feed her, but it is complicated on how to proceed … I don’t think she is trying to sabotage treatment. She is behaving the best she can and it could end her life.”
Ramsey said her daughter is getting about 600 to 800 calories per day instead of 5,000 to 6,000 required to get to a healthy weight. Every night, she takes Karleigh to eat a hot fudge sundae — once it melts and she can drink it through a straw.
“My daughter doesn’t understand what is happening to her,” the mother said. “And I don’t think she understands she could die. She needs help.”
kevin.rollason@freepress.mb.ca
Kevin Rollason
Reporter
Kevin Rollason is a general assignment reporter at the Free Press. He graduated from Western University with a Masters of Journalism in 1985 and worked at the Winnipeg Sun until 1988, when he joined the Free Press. He has served as the Free Press’s city hall and law courts reporter and has won several awards, including a National Newspaper Award. Read more about Kevin.
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