Our Care for the Dying is Not Good Enough!

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A nationwide review of end-of-life care found most hospitals are failing to provide face-to-face palliative care specialists around the clock. The NHS accept there has been a steady improvement in the past two years but acknowledge there is still work to do on this front.

Many patients and doctors do not have full access to on-site palliative care specialists at evenings and weekends

The review shows only 16 of 142 hospital sites in England offer specialist support on site on a 24/7 basis.

This incidentally is the first review since the controversial Liverpool Care Pathway was scrapped.

So what are the major deficiencies?

The Liverpool Care Pathway was phased out due to heavy criticisms for it had been misused as a mere tick-box exercise, leaving some patients without food and water.

To replace this a series of guidelines has suggested moving away from a one-size-fits-all approach, instead focusing on individual care for the dying patient in question.

This report, led by the Royal College of Physicians, shows there have been improvements in all areas for example, that communication with patients and relatives had improved.

However, there were still a number of concerns. In 18% of more than 9,000 patient notes researchers examined, there was no written evidence to suggest that do-not-resuscitate decisions had been discussed with relatives or friends. In about around 3,000 cases there was no evidence that the patient's ability to eat and drink had been assessed on the last day of life.

Of serious note and the researchers' main concern was that many patients and doctors did not have full access to on-site palliative care specialists at evenings and weekends.

So what happens during out of hours?

The majority of hospitals did offer a specialist telephone helpline at all times and 53 of 142 hospital sites offered face-to-face palliative care on Monday to Sunday between 9am to 5pm so what about the remaining hospitals?

With 26 trusts there was no record of face-to-face specialist palliative care involving doctors at any time.

According to the doctor who led the research, Dr Sam Ahmedzai said:

"We know that most front-line doctors and nurses giving end-of-life care do it to a very good standard.

"But the problem happens when things start to go wrong and often they go wrong out-of-hours in the middle of the night and at weekends.

"Then doctors and nurses who may be inexperienced need to be able to access specialists in palliative care."


He says without this, patients with complex problems may not get the care they need.

The BBC report gave the case study of Julie Coombes whose father found out he had bowel cancer in May 2015. He was in and out of hospital for three months. But Ms Coombes, 33, from Plymouth, says her father didn't feel he had good care there. She says his symptoms and sickness could not be controlled, so the family decided to take him out of hospital to die at home.

She said: "While he was in hospital the palliative care team came for about five minutes, while he was in his bed with everyone around and just said you are going to die. Apart from that we did not get any leaflets or any help... It is not something I would want anyone else to experience."

Concerns

Dr Kevin Stewart of the Royal College of Physicians said he was encouraged by the improvements but he added "We are disappointed that there are still major deficiencies in the provision of specialist palliative care at nights and weekends by many trusts; patients and their families deserve the same level of service whatever the day of the week."

Dr Adrian Tookman, clinical director of the charity Marie Curie, which part-funded the review, said:

"We can't ignore the fact that the vast majority of dying people and those close to them still have limited or no access to specialist palliative care support when they need it in hospital. This is not right, nor good enough.

"Care of the dying has no respect for time, so if we are to deliver a consistent seven-day service by 2020, it is critical that funding is directed towards recruiting and training doctors and nurses."


He acknowledged the difficulties for families of patients but said they had to "speak up and demand the right care".

Amanda Cheesley of the Royal College of Nursing told BBC Radio 4's Today programme that end-of-life care raised complex issues and among nurses there was "still a fear of doing the wrong thing".

NHS England, which commissioned the review, welcomed the improvements, but said it was clear that more could be done.

The writer is a Solicitor and a former primary carer for her late father. According to Daxa Patel “my father and I were lucky we had a very supportive G.P. and my father died in his own home as he wished but most people do not get that kind of support. I know of friends whose parents had a DNR (do not resuscitate) and the family were not advised. It does not bear thinking about the anguish the dying person and their family will go through in the absence of end of life palliative care. Everyone has a right to a dignified death.”


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