Ruby, 23, weighs just 22kg and can't digest food. Photo / Michael Cunningham
Ruby, 23, weighs just 22kg and can't digest food. Photo / Michael Cunningham
WARNING: Confronting images
Ruby Hill weighs just 22kg, cannot digest food and has been sent home by doctors who say she's "at the end of the road".
Though in crippling pain, the 23-year-old has been refused palliative care because she remains on IV fluids which provides her body with liquidbut no nutrition.
"Basically I was sent home to starve to death," she said.
"I have no extra home care or anything, so no hospice, no pain relief. I'm pretty much just living off fresh air."
In 2015, she was diagnosed with idiopathic gastroparesis - a condition where the stomach is unable to empty itself of food properly.
The disease is so rare, many doctors know little about it.
Medical notes, read by the Herald, showed Hill had trialled multiple feeding options but had been unable to tolerate any long-term.
She had also been given numerous forms of pain relief, anti-vomiting, immune system and other medications, however all have failed.
On January 11, Hill was discharged from hospital. In a letter sent from Northland DHB to her GP it said: "Despite trying every possible TPN (total parenteral nutrition) formulation, we have come to the end of the road."
An "experimental" bypass surgery was suggested by doctors but due to Hill's low potassium levels and intolerance to pain relief Hill and her mum ruled it out.
"Her potassium level was too low to operate, it involved three procedures, more than a month in hospital not able to move with a catheter inserted and no pain relief," Jo said.
She said the surgery hadn't been done on someone with Hill's condition before and they did not know if it would work.
Ruby Hill says she is dying with no medical help. Photo / Michael Cunningham
The DHB's chief medical officer Dr Michael Roberts told the Herald for a person in Hill's condition any sort of operation would be a very high-risk procedure.
"I guess the challenge is if you are in a position where that's the only thing that might allow you to survive you have to decide whether or not you take that risk," Roberts said.
The DHB would not comment on the type of surgery that was being offered or go into any detail as to how it would help Hill.
Roberts said the DHB respected Hill's decision not to go through with the surgery but it did mean that unfortunately there was nothing they could do for her.
"The DHB is not responsible for determining whether or not a person is eligible for palliative care - that's for Hospice to decide," Roberts said.
Jo said she had tried to get her daughter Hospice care but was told that was not an option.
North Haven Hospice medical director Warrick Jones told the Herald they were not providing primary care to Hill as she was choosing to pursue treatment to extend her life.
"We understand that the hospital team and GP remain actively involved in Ruby's care.
"North Haven Hospice supports her in this but we are not the primary team to provide these treatments for her," Jones said.
The Herald twice asked what treatment he was referring to but did not get a response.
Hill said the only "treatment" she was getting were the IV fluids which didn't give her any nutrition.
The fluids contained sodium chloride for rehydration and potassium to stop her from having a heart attack.
Since being discharged from hospital care, her mum has been providing her daughter with full-time care. A district nurse visits once a week to draw bloods and if she needs she can book an appointment with her GP.
In that time, her weight has dropped from 36kg to 22kg.
"She doesn't have long," her mum said.
Roberts said it didn't take a doctor to understand that someone who was extremely malnourished and was receiving only intravenous fluids with no nutritional content was not likely to live for any length of time.
"Very few people would go to Hospice not receiving fluids, it certainly would not be an entry criteria," he said.
Jo claimed a Whangarei Hospice staff member told her daughter he didn't believe she was dying.
"One of them came to see Ruby just before a surgery and asked why she thought she was dying, he said he had seen girls like her with anorexia and could help.
"It was so awful to hear he didn't believe her despite seeing her medical notes. I just told him to leave. He was making Ruby upset and that's the last thing she needed before surgery," Jo said.
A palliative care specialist the Herald spoke to said there was no reason a patient receiving IV fluids couldn't get palliative care.
"There are different models of palliative care around the country, some would not have IV fluids under their service but other services would very much do allow it."
It was a "lottery" up and down the country in terms of access to this service, the palliative care specialist said.
In the meantime, Hill waits to die in pain and without the care her mother says she so desperately needs.
"We would like to see something positive come from Ruby's experience and that was for doctors to lose the professional bias and listen to their patients," Jo said.
