An investigation into the death of a severely disabled woman in Hutt Hospital blames a lack of understanding of her needs by busy staff.
The 52-year-old who worked as an analyst with the Health Ministry's disability policy team died on May 25, 2008.
Friends said the tragic irony of her death was that she spent her life fighting for better health services for people with disabilities.
An independent review released to The Dominion Post found staff tried hard to deliver nursing care to "Ms A" but appeared to have "little understanding" of her disability support needs.
Nurses left food but "didn't seem to realise that without help she couldn't eat it".
They saw her as a "demanding" patient, needing significant hands-on care, when the unit was "busy and short-staffed".
Hutt Valley District Health Board which ordered the report after clinical staff raised concerns about the death said the case had been "a significant learning experience" and resulted in major operational changes.
The patient, who suffered spinal muscular atrophy, was partially paralysed and had to wear a brace to sit up and breathe comfortably.
However, despite her repeated requests, there was "resistance" from nursing staff to help.
A support person said nurses "appeared arrogant in assuming that she didn't need to get up".
Her elderly mother told investigators she had been "deeply disturbed about the care and attitudes of staff on a number of occasions but didn't say anything because she felt her daughter would suffer when she and others weren't there".
"There appeared to be little understanding that when Ms A was in bed she was more or less helpless ... staff have used words like `demanding' and recorded her as ringing the bell `plus plus', suggesting the extent of Ms A's disability and its consequences were not understood or appreciated."
On day six, a dietician noted a naso-gastric tube was simply draining the food she ate but it was still in place four days later.
After two weeks in hospital, a feeding tube was inserted directly into her intestine. She complained of pain, but apparently the possibility of a bowel perforation a known complication of the procedure was not considered.
She died on her 18th day in hospital, from peritonitis caused by a tiny nick in her bowel made during placement of the tube.
The report said it was uncertain whether early treatment would have saved her, but in her weakened physical state it would have been harder to fight the infection.
Because of problems during earlier hospital stays, the patient had met with doctors, management and health board members to ensure a support plan was in place for future admissions. However, nurses said they had not been aware of the issues.
The report noted there was "very little continuity of care" with 27 healthcare professionals including 15 different nurses involved over 18 days. Many were casuals.
The reviewers made 24 recommendations, including ongoing "staff responsiveness" training, a review of early warning systems, management plans for high-needs patients, and calls on the health board and the ministry to look at the service gap for people under 65 with disabilities in hospital.
Hutt's chief operating officer Jill Lane said staff were "devastated" for the patient and her family and took "full responsibility".
More permanent staff had been appointed, and the medical ward restructured into smaller teams.
Each patient was now under the oversight of a senior nurse. "We are sharing the findings with other boards, the Health Ministry and the health and disability commissioner to help other health providers."
The patient's family declined to comment.
Disabled Persons Assembly national policy researcher Wendi Wicks , a friend of the dead woman, said Hutt "deserved full credit" for recognising the problem but sadly the issues were endemic.
Well-meaning policies got "lost at the frontlines" and people with disabilities often bore the brunt of lack of resources.
"People who need to ask for help with eating and washing are sometimes made to feel like they are being unreasonable."
- The Dominion Post
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