Now sick babies go on death pathway
DailyMail: Sick children are being discharged from NHS hospitals to die at home or in hospices on controversial ‘death pathways’. Until now, end of life regime the Liverpool Care Pathway (LCP) was thought to have involved only elderly and terminally-ill adults. But the Mail can reveal the practice of withdrawing food and fluid by tube is being used on young patients as well as severely disabled newborn babies.
Earlier this month, an un-named doctor wrote of the agony of watching the protracted deaths of babies. The doctor described one case of a baby born with ‘a lengthy list of unexpected congenital anomalies’, whose parents agreed to put it on the pathway.
The doctor wrote: ‘They wish for their child to die quickly once the feeding and fluids are stopped. They wish for pneumonia. They wish for no suffering. They wish for no visible changes to their precious baby. Their wishes, however, are not consistent with my experience. Survival is often much longer than most physicians think; reflecting on my previous patients, the median time from withdrawal of hydration to death was ten days. Parents and care teams are unprepared for the sometimes severe changes that they will witness in the child’s physical appearance as severe dehydration ensues.’
The use of end of life care methods on disabled newborn babies was revealed in the doctors’ bible, the British Medical Journal. ‘I know, as they cannot, the unique horror of witnessing a child become smaller and shrunken, as the only route out of a life that has become excruciating to the patient or to the parents who love their baby.’ According to the BMJ article, the doctor involved had presided over ten such deaths in just one hospital neonatal unit.
The LCP for children has been developed in the North West, where the LCP itself was pioneered in the 1990s. It involves the discharge to home or to a hospice of children who are given a document detailing their ‘end of life’ care.
One seen by the Mail, called ‘Liverpool Pathway for the Dying Child’ is issued by the Royal Liverpool Children’s NHS Trust in conjunction with the flagship children’s hospital Alder Hey. It includes tick boxes, filled out by hospital doctors, on medicines, nutrients and fluids to be stopped.
The LCP was devised by the Marie Curie Palliative Care Institute in Liverpool for care of dying adult patients more than a decade ago. It has since been developed, with paediatric staff at Alder Hey Hospital, to cover children. Parents have to agree to their child going on the death pathway, often being told by doctors it is in the child’s ‘best interests’ because their survival is ‘futile’.
Bernadette Lloyd, a hospice paediatric nurse, has written to the Cabinet Office and the Department of Health to criticise the use of death pathways for children. She said: ‘The parents feel coerced, at a very traumatic time, into agreeing that this is correct for their child whom they are told by doctors has only has a few days to live. It is very difficult to predict death. I have seen a “reasonable” number of children recover after being taken off the pathway. ‘I have also seen children die in terrible thirst because fluids are withdrawn from them until they die.
‘I witnessed a 14 year-old boy with cancer die with his tongue stuck to the roof of his mouth when doctors refused to give him liquids by tube. His death was agonising for him, and for us nurses to watch. This is euthanasia by the backdoor.’
Teresa Lynch, of protest group Medical Ethics Alliance, said: ‘There are big questions to be answered about how our sick children are dying.’
A Department of Health spokesman said: ‘End of life care for children must meet the highest professional and clinical standards, and the specific needs of children at the end of their life. ‘Staff must always communicate with the patient and the patient’s family, and involve them in all aspects of decision making.’
I certainly hope children here in America are not going to be subject to this “pathway” once Obamacare is implemented. Heartbreaking.