Family of Christian woman who died on Christmas Day after Court order to remove food and fluids speak out after gagging order lifted
19 January 2025 Issued by: Christian ConcernHyacinth McIntosh, known as ‘XY’ under a Court of Protection ‘transparency order’, can now be named after she died on Christmas Day following her life support, food and fluids being withdrawn against her family’s wishes.
Hyacinth, aged 54, who entered a deeply unconscious state following a heart attack and hypoxic brain damage in May last year, defied expectations that she would die following removal of artificial ventilation on 14 December under the order of the Court of Protection.
The order ruled that prolonging her life was not in her “best interests” and that she should only receive ‘palliative care’.
However, following the Court order, the NHS also refused to provide her with any clinically assisted feeding or hydration over the next 11 days, condemning her to die of dehydration.
Following the scandal over the ‘Liverpool Care Pathway for dying patients’ in 2013, the guidelines issued by the National Institute for Health and Care Excellence (NICE) require that clinicians should consider providing patients with adequate hydration at the end of their life.
Supported by the Christian Legal Centre, and represented by barrister, James Bogle, Hyacinth’s daughter, Shanika Davis, also secured the support of the retired palliative medicine expert, Professor Sam Ahmedzai, who had chaired the committee preparing the 2015 NICE guidelines for end-of-life care.
In an urgent application submitted to the Court of Protection, Professor Ahmedzai argued that withdrawal of fluids from Hyacinth would be “cruel, inhuman and degrading.”
He added that current guidelines make it clear that “the provision of palliative hydration could be an integral part of good palliative care”, which was what the Court had ordered.
However, the Urgent Applications Judge at the Court of Protection, John McKendrick KC, rejected Professor Ahmedzai’s evidence as attempting a “head on challenge” to the earlier ruling of the Court that all treatment was to be withdrawn.
His decision was upheld by Lord Justice Peter Jackson and Lord Justice Baker in the Court of Appeal on Saturday 14 December.
Life support, food and fluids were immediately withdrawn by King’s College Hospital the same afternoon.
After keeping Hyacinth without fluids for 6 further days, King’s College Hospital finally allowed to let her daughter take her home, but the discharge letter to her GP stated the patient was “not for fluids”.
On Monday 23 December the family was visited by a social worker, accompanied by a doctor from the local hospice. After Hyacinth’s daughter argued that her mother should be given an infusion of fluids to save her from dehydration, the social worker intimidated her by suggesting that she was concerned about her ability to care for her own children.
Hyacinth’s family was devastated when she died the morning of Christmas Day.
Hyacinth, described as a ‘vibrant character’ and a ‘pillar of her local church’, had suffered a heart attack in May 2024 that had left her brain damaged from being deprived of oxygen before she received medical help. She initially went into kidney failure but that resolved with ICU treatment.
However, she remained unconscious for the following 6 months and the doctors at King’s College Hospital concluded that, while she was not terminally ill and with appropriate care and treatment could survive for some years, her ‘quality of life’ was unlikely ever to improve.
They refused to perform a tracheostomy and a gastrostomy to enable her to be discharged home to be looked after by her family, and instead applied to the Court of Protection arguing that prolonging her life was not in her best interests.
Family’s pleas ignored
The application was strongly opposed by Mrs McIntosh’s large family, including her ex-partner, both children, granddaughter, grandson and two cousins.
The family told Justice Arbuthnot they were convinced that, because of her personality and Christian beliefs, ‘XY’, as Hyacinth was known then, would have wanted to be kept alive and leave it to God to choose the time of her death.
The family argued that Hyacinth’s neurological condition had improved, and the family members said they had witnessed her reacting to their voices by eye movements and squeezing their hands when asked to do so.
However, the judge ruled that the evidence of the family and Hyacinth’s own wishes were “outweighed” by the medical opinion about her poor prognosis.
The family complained that the reporting restrictions imposed by the Court of Protection prevented them from looking for an alternative hospital, to ask the public for donations to fund private treatment, or to expose the unfairness and cruelty of the system which is enforcing death of their mother against her wishes.
The hospital said that there was no benefit to Hyacinth in maintaining her life “artificially” and it would be in her best interests for Ventilation and Clinically Assisted Nutrition and Hydration all to be withdrawn.
‘Inhuman and degrading’ says expert
Their family’s grief has been amplified with the knowledge that the NHS and courts ignored expert evidence from Professor San Ahmedzai who led the guidelines for the National Institute for Health and Care Excellence (NICE) Guidance on end-of-life care.
In his report, Professor Ahmedzai, said it would be ‘cruel’ ‘degrading’ and ‘inhuman’ for Hyacinth’s life support to be withdrawn in this way.
“In my opinion, although the present Court order is for withdrawal of all life-sustaining medical treatments, it would be cruel, degrading and inhuman if she spontaneously lives longer than a few days, for assisted hydration and feeding to be permanently withheld. In a dying person, current guidelines make it clear that assisted hydration is not intended primarily to prolong life, but rather to provide comfort while HM is living [see NICE 2015; GMC 2022]. Thus the provision of palliative hydration could be an integral part of a good Palliative Care Plan.”
He added further on in his report: “There is no justification for withdrawing existing nasogastric hydration and feeding in such a case, even after withdrawal of assisted ventilation. Even if, after extubation, HM lives for only a matter of days, then removal of the NG tube would be an unnecessary and unusually cruel, degrading and inhuman thing to do.”
Professor Ahmedzai now says that the case highlights an ongoing crisis in the provision of end-of-life care by the NHS.
He says: “Although the majority of patients who come under specialist palliative care services do achieve a good death in terms of pain and other symptoms, the provision of assisted hydration at the end of life is much more hit and miss.”
This, he adds, “reflects a reluctance by some services providing end of life care to let go of the Liverpool Care Pathway, which was abolished by Parliament in 2013 precisely because it offered a one-size-fits all approach including the withholding of hydration, even to those begging for it”.
Professor Ahmedzai produced a report for a Parliamentary group published in 2023 called ‘When End of Life Care goes Wrong’, which highlighted many continuing instances of withholding hydration and other features of the abolished Pathway in NHS and hospice services.
Professor Ahmedzai said: “Our report was an invitation for the Government to examine how some patients and families are receiving substandard and inhuman care at the end of life. All MPs received a copy but not a single question was raised in Parliament after its publication. It is incredible that a practice abolished by Parliament in 2013 is still being used and led to a lady dying from dehydration on Christmas Day.”
‘Beyond cruelty’ says daughter
Speaking on behalf of the family, the daughter of Hyacinth, Shanika Davis, said: “How my mother died was beyond cruelty. There was no dignity or respect, and we refuse to believe that it was in her ‘best interests’ to die.
“My mother was at the centre of our large family and a big part of her community and a pillar of her local church with lots of friends. She was a popular person who cared deeply about other people. Everyone who knew her said that she would have wanted to take every chance to continue to live and would not have want to be put to death.
“Our wishes as a family and my mother’s right to life have been trampled on by the hospital and the courts. Even now, authorities are refusing to put on my mum’s death certificate that the immediate cause of her death was dehydration.
“Contrary to the doctors’ predictions, my mother survived the removal of ventilation support and breathed very well on her own, with oxygen saturation between 95 and 100 per cent at all times. However, the NHS and the Court refused to revisit their earlier decision and condemned her to a cruel death from dehydration rather than admit that they might have made a mistake.
“Like many families before us, the whole system has come against us and it leaves you almost helpless and powerless. Death was forced on us rather than helping us pursue options for life. That is wrong and we are appalled by how many other families have had to go through this.”
Highly concerning
Andrea Williams, chief executive of the Christian Legal Centre, said: “The ruling from the court enforcing the removal of food and fluids from Hyacinth against the family’s wishes and the presumption of life shows clearly that the current system cannot be trusted to protect life or respect the views of patients and families who believe, often because of their Christian faith, that it is in their ‘best interests’ to live rather than die.
“At the time it should take urgent action to sort out the end-of-life care crisis so as to promote the best palliative care promoting life not death, our Parliament remains sadly fixated on legislating to expand the ‘right to die’.
“This story raises the spectre of how vulnerable patients and families will be treated under any ‘assisted dying’ legislation.
“It’s highly concerning. Good law protects life, does not blur boundaries and should never promote death.
“If this is happening, before assisted suicide legislation is passed imagine what we will see if such legislation comes into force.
“To ignore Professor Ahmedzai’s evidence that the withdrawal of food and fluids in this way was ‘inhuman’ is extraordinary. It demonstrates the lengths the courts are already prepared to go when their judgment will result in certain death rather than upholding life and treating patients with dignity according to their wishes and the wishes of their family.”
