“A person with a developmental disability shall have the opportunity to make life choices that do not compromise health and safety, and such choices shall be respected.” (NYS-ORDD)
In the case of Ms L., a 32-year-old female with Down syndrome (PGA-2), hypothyroidism, and chronic constipation, her life choice was not to eat. Her thin and gaunt face, sparsely braided hair and disheveled clothes, belied her age. She was admitted after she had lost one hundred pounds in the past year. Two previous hospitalizations with extensive gastroenterology diagnostic workup had not revealed the root causes for her weight loss.
Her parents were separated. Her mother worked and she was left to the mercy of her older sister who bossed her around. Her younger sister, her main support and companion had moved away from home. Unable to control the changes in the family dynamics or the embarrassing spurts of bowel incontinence in public, she became a social isolate. Her locus of control became the one thing which she alone controlled; her gastrointestinal functions. Her meals were left untouched. She complained of lower abdominal pain, constipation and encopresis.
Her admission weight was 85 pounds. During her course in the hospital, she continued to lose weight. She also refused to entertain any discussions regarding the placement of a feeding tube. There was no resolution to her gastrointestinal symptoms. Her mood remained depressed. She was started on Prozac by psychiatry. Her synthroid was held as it was felt this was contributing to her weight loss.
It was very difficult to formulate a discharge plan for Ms. L. She needed temporary placement in an environment that was structured, supportive, non-threatening and therapeutic. The medical team requested placement in a skilled nursing facility. However, the social worker and case manager supported the need for inpatient psychiatry care. Central to this dichotomy was the implicit need of every team member to adhere to the principles and regulations of OMRDD. The patient’s continued weight loss was the catalyst to break the impasse. In order to prevent further deterioration in her health, she was transferred to the inpatient psychiatry unit.
Ms L. was slow to respond to the social, psychiatric, therapeutic, and pharmacological intervention. She was non-compliant with treatment for her bowels, and was often observed “overtly attempting not to have a bowel movement.” A significant finding during her stay in psychiatry was her persistent hypotension. Further medical workup revealed she had adrenal insufficiency. After approximately three weeks in inpatient psychiatry, she gained eight pounds. She was discharged home to her mother’s care.
Three months post discharge I am proud to report she continues to gain weight. She is compliant with follow-up appointments with psychiatry, hematology and endocrinology. She has improved her communication skills and will be returning to her group day program.
The success of this case represents the true meaning of team work and interdisciplinary collaboration.
