Respect and compassion central to new NICE guidance on end-of-life care

By The Press Association16th December 2015News EnglandEnd Of Life Care, Guidance, News England, Older People, Palliative Care

Dying people should be treated with respect and compassion and doctors should not make “snap” decisions about their care, a watchdog has said.

The National Institute for Health and Care Excellence (Nice) said doctors should seek support to help “diagnose” dying and should look to create an individual care plan involving the patient and their families.

Nice’s new guidance on caring for people when death is imminent is an attempt to move away from the heavily-criticised Liverpool Care Pathway (LCP).

The LCP was phased out last year after an expert review found a “tick-box” culture was leading to dying people being put on the pathway without the knowledge of their families.

Hospitals were paid millions to reach targets for the numbers of patients dying on the LCP. Families criticised decisions which led to their loved ones having nutrition and fluid withdrawn or receiving such heavy sedation that they could not be roused for a drink.

The new Nice guidance contains some of the key principles of the LCP but says doctors must encourage patients to drink if they are able to do so.

If they are unable to, then swabbing the mouth using damp sponges or special oral sprays will help relieve discomfort, it said.

Doctors and nurses must also consider introducing fluids via a drip if it may relieve uncomfortable symptoms for the dying patient – such as a severe dry mouth or delirium.

However, the team said there is very little evidence on whether giving fluids via a drip can extend life or shorten it. They also pointed to some of the risks, such as bodily swelling in a person whose body is unable to process the fluid properly.

Under the new guidance, doctors and nurses must look for signs that the person may be recovering – even temporarily – or indeed stabilising.

People should also be reviewed daily, while medical investigations that are not needed or are not beneficial should be stopped.

Doctors must also look to relieve other symptoms experienced by those close to death, such as agitation, hallucinations, nausea and vomiting, fluid on the lungs and pain.

Sam Ahmedzai, a professor of palliative medicine at the University of Sheffield and chair of the committee which developed the guideline, said: “The LCP was originally developed to help the NHS provide ‘a good death’ for people at the end of their lives.

“However, its implementation became increasingly controversial over the years with stories of fluids and medicines being withheld, over-sedating the dying person.

“There were also problems with inexperienced staff recognising when someone was truly close to death, or if they had a possibility of recovery. It became seen as a ‘tick-box exercise’ and a ‘one-size-fits-all’ approach.”

He said there was “no excuse” for individual doctors making “snap” decisions about people in their final hours without consulting more senior doctors or a specialist palliative care team.

“If the person that thinks someone is dying – it could be a junior doctor in the hospital in the middle of the night with no-one to turn to – they should seek advice from a more experienced colleague,” he said.

“That may be somebody more senior in the same team or it might be a specialist in end of life care, but there is no excuse for individuals making decisions about whether someone is dying and not taking advice on that.”

Prof Ahmedzai said the main difference between the new guidance and the LCP was the focus on the individual.

“The main thing that is different is that we are saying we would want to have an individualised approach rather than applying a blanket approach, as would apply using the LCP in an unthinking way.”

He said there was also a need to encourage “doctors and nurses just to be more respectful of the patients that they are looking after.

“You don’t need a lot of intensive scientific training to encourage people to show respect and give compassionate care.”

The dying person’s wishes must be taken into account – such as if they have asked for a do not resuscitate (DNR) order to be put in place – alongside their preferred place of death and their spiritual needs, the guidance said.

Families should also be involved in discussions and be given a chance to talk about their fears, alongside practical help such as numbers for out-of-hours doctors and nurses.

Medical teams should look for specific signs somebody is dying – such as a deteriorating level of consciousness and social withdrawal, long pauses between breaths known as Cheyne-Stokes breathing, and noisy breathing.

Susan Dewar, a community district nurse who worked on the guidance, said: “Lots of the things that we have got in our guidance are very similar to those in the LCP but the difference is that it’s individualised and you are involving the patient – not just asking questions and ticking a box.”

It is estimated that about half a million people die each year in England, and three out of four of these deaths are expected.

Lord Howard of Lympne, chairman of Hospice UK, said: “There can never be ‘a tick-list approach’ towards caring for the dying and this guidance must be underpinned by greater investment in training and education for all staff involved in end of life care.

“This is crucial if we are to avoid the failings of how the Liverpool Care Pathway was implemented.”

Professor Bill Noble, medical director at Marie Curie, said: “We welcome the new guidelines and the ambition to ensure that care at the very end of life is provided in a compassionate and informed way that reflects the individual needs and wishes of the patient, their families and those close to them.

“However, without implementation, including effective training for staff, these latest guidelines will fail to deliver a genuine shift in attitudes and care.”

Katherine Rake, chief executive of Healthwatch England, said: “Poor end-of-life care denies people a dignified, peaceful death, and comes at a huge financial cost to the NHS.

“This new Nice guideline will help to focus professionals on involving and informing patients and their loved ones in their end-of-life care, so they are spending their final days as they wish.”

Duleep Allirajah, head of policy at Macmillan Cancer Support, said: “We hope that these new guidelines will do much to tackle the unacceptable level of variation that we sadly still see in end of life care across the country.

“The emphasis in the guidelines on areas such as good communication, shared decision making and identifying people who are in the last days of life are all welcome.

“We are also pleased to see a greater focus on the individualised care plans, which should, if implemented properly, help ensure that peoples’ wishes at the end of life are fulfilled, and that they are as comfortable as possible.”