Dying is a problem throughout the world. Most 2nd and 3rd world countries have hospices as add-ons to Hospital or Community care in centres of population. The pretence that care for the dying is not rationed is partly responsible, as is the denial of most politicians and the public. A collusion to deny quality care to the dying has been inevitable since GPs were relieved of their 24 hour responsibility for patients. In my own area of the country there were 5 doctors with a diploma of palliative care, but they were never facilitated to work where they could have been most useful – in Hospital. The result of not using their skills is that fewer GPs have applied for the diploma, and the ones who did have retired; their skills have been lost. There will be no fuss because dead patients do not vote. Hospice at home is a good solution and if state funds went in this direction some form of equity might be possible.
Thousands of people are still dying thirsty and in pain because doctors and nurses are “terrified” of talking about death, a review by the Royal College of Physicians has found.
End-of-life care has improved since the abolition of a controversial death checklist freed staff to act with human compassion, the audit concludes.
However, there is still “unacceptable variation” in care, with many hospitals not taking caring for the dying seriously enough. Only one in ten has full palliative care services available 24/7.
The audit is the first since the scrapping of the Liverpool Care Pathway (LCP), which an official investigation found led to dying patients being refused food and drink by staff acting on “tick box” protocols.
Sam Ahmedzai, who led the review, said that it was heartening to see improvement after staff were urged to listen more to their patients.
“Many people felt that when the LCP was withdrawn that would lead to a breakdown of end-of-life care. Far from it: in almost every area there has been improvement,” he said. “Doctors and nurses are paying more attention to individual needs rather than blanket prescribing.” However, the review of 9,300 patient records across 142 hospitals found that in 21 per cent of deaths there was no evidence of pain relief.
Half of dying patients had not been helped to drink in the last day of their lives and a third had not been checked to see if they needed fluids.
One hospital failed to check whether 90 per cent of dying patients needed water and many checked fewer than half. “That’s not acceptable, we need to do better,” Professor Ahmedzai said.
Many families appear to have been left in the dark, with a fifth not told that a “do not resuscitate” order was placed on a dying relative and a third not consulted about “nil by mouth” orders.
Tony Bonsor, a patient representative on the review, said: “Too often relatives’ first sense [that someone is about to die] was a nil by mouth above the bed. That is not the way to communicate.”
Almost half of the 500,000 deaths in England every year take place in hospital but Mr Bonsor argued that hospitals still see caring for the dying as an afterthought. “We have to understand that one of the functions of the health service is to give people good end-of-life care,” he said.
Amanda Cheesley, of the Royal College of Nursing, said that failings often stemmed from a deep-seated desire to avoid an uncomfortable topic. “People are terrified,” she said. “People would cross the road to avoid talking to somebody who is actually dying or bereaved. “We mustn’t do that in hospitals.”
The audit also expressed concern about a shortage of trained staff to help patients at the end of their lives, with only 37 per cent of hospitals having face-to-face palliative care services from 9 to 5 and 11 per cent providing them around the clock.
Adrian Tookman, clinical director at the charity Marie Curie, said: “We can’t ignore the fact that the vast majority of dying people still have limited or no access to specialist palliative care support when they need it in hospital. This is not right nor good enough.”
NHS England said the audit showed that there had been some improvement. A spokesman added: “There are clear variations in the support and services received across hospitals, and areas where improvements must be made.”
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