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Rachael Harris is a 36 year old female. She lived a normal healthy life until the age of 16. When she was 16 she developed a pituitary adenoma causing hyper-pituitarism. At 17 years old an operation was attempted to resect the tumour, which was unsuccessful and was only able to partially remove it. As such, her hyper-pituitarism continued. At 22 years old the medical team attempted a second tumour resection which was also unsuccessful and resulted in a post-operative haemorrhagic CVA. 

Over the past 20 years Rachael’s condition has progressively declined due to her medical condition. 

Associated with hyper-pituitarism she has developed impaired vision, severe and chronic headaches, psychiatric changes including irritability, hostility, depression and anxiety. She has acromegaly (in response to growth hormone – physical enlargement and disfigurement),  sleep apnoea, chronic joint and bone pain, type 2 diabetes which is unstable and difficult to manage, requiring  subcutaneous insulin daily, Cushing’s Syndrome due to increased secretion of adrenocorticotropic hormone, severe fatigue, and cognitive dysfunction. She has dense right sided hemiplegia, and repeated spinal fractures secondary to osteoporosis has resulted in a t9 crush fracture and subsequent associated incomplete paraplegia. Her progressive osteoporosis also results in frequent fractures of other bones, and her injuries are easily sustained during transfer to bed and chair or pressure area care. This causes additional, severe pain. She has lost the ability to thermoregulate and is persistently hypothermic at a temperature of 32 degrees Celsius. She is incontinent of both urine and faeces and has an SPC for urinary elimination management. Due to physical deformity of her neck (secondary to acromegaly) she is unable to swallow, and she had a PEG inserted when she was 29. She is fed via PEG boluses. She requires a hoist and assistance of 3 people to transfer to her to a wheelchair. She requires specialised bariatric nursing equipment and care due to her acromegaly. 

Currently, her level of cognition is variable. It is clear that she understands her context, and can interact with others at the same level as a small child. She has evidenced cognitive impairment, though she can communicate clearly what she wants. She is not able to verbalise. She communicates by sign boards and body language.  She can display aggressive behaviours, has a labile mood and profound strength when she is agitated making her violent at times. Due to her cognitive impairment, Rachael’s father is her legal guardian. 

Rachael has gone into respiratory failure and been BIBA to ED, and transferred to ICU. The multidisciplinary team review Rachael and it is determined that the source of her respiratory failure is due to her acromegaly, and her lungs being physically unable to support the size of her body any further. There is no underlying pathology of the lungs which is reversible.  It is decided that the treatment options from here include a palliative care approach, or active treatment which will not improve quality of life or reverse any of Rachael’s presenting symptoms. If active treatment is pursued then Rachael will require immediate intubation, and long term tracheostomy and permanent mechanical ventilation. 

The medical team discuss this with Rachael’s father, with Rachael present. Rachael hears what is said, and starts to become agitated, violenting shaking her head in opposition when the active treatment pathway is identified. She nods her head adamantly when the medical team mention palliative care. Rachael’s father explains that when Rachael’s mother died 10 years ago, he promised her that he would take full care of Rachael and do everything he can for her. He believes that Rachael can still see her surroundings, and interact on a basic level and that is a satisfactory quality of life for her. He understands she will need full time, 24hour nursing care with permanent ventilation. He would like to pursue full and active treatment. 

When Rachael hears her father say this, she begins to cry and becomes visibly distressed. The medical team appear to be ignoring Rachael’s non-verbal communication though it is apparent they have seen it. 

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