New guidelines on end of life care published by NICE

“NICE urges doctors to treat dying patients as individuals,” BBC News reports. The headline is prompted by the publication of new guidelines from the National Institute for Health and Care Excellence (NICE) on end of life care.

The guidelines are designed to replace the controversial Liverpool Care Pathway, which was phased out in 2014.

What was the Liverpool Care Pathway?

The Liverpool Care Pathway (LCP) was developed during the late 1990s at the Royal Liverpool University Hospital, in conjunction with the Marie Curie Palliative Care Institute. It was intended to provide the best possible quality of care for dying patients in the last hours and days of life, whether they were in hospital, at home, in a care home or in a hospice.

Most palliative care experts felt that if carried out properly, by trained staff, the LCP could help ensure death is as dignified and as peaceful as possible.

A recent independent report ranked the standard of end of life care in the UK as the best in the world. Still, concerns were raised in the media that, in some cases, the LCP was not being correctly followed, allegedly leading to unnecessary suffering in patients and emotional trauma to family and friends.

As NICE highlights in its new guidelines, there were three main areas of concern:

• The decision that a person was dying was not always supported by an experienced clinician and not reliably reviewed, even if the person may have had potential to improve.
• The dying person may have been unduly sedated as a result of inappropriately prescribed medication.
• Concerns that hydration and some essential medicines may have been withheld or withdrawn, resulting in a negative effect on the dying person.

What are the main recommendations?

The main recommendations of the new guidelines are outlined below – for a complete list visit the NICE website.

Recognising when someone is in the last days of their life

If someone is dying, they should be checked every day for symptoms and changes that might show they are close to death, and also for signs they are not getting any worse or might be improving.

If someone is likely to die very soon, this should be explained to them by a member of their care team honestly and in as much or as little detail as they want. They should be able to have the people important to them with them when they have this discussion, if they wish.

Discussing and planning care

It is important that people are involved in decisions about their care in the last days of their life, if that is what they want, and that their wishes are respected.

Their doctor or another member of the care team should talk to the person who is dying about the care and support they would like and, if the person agrees, involve their family members or other people important to them in these discussions. This might include particular treatments or identifying who should make decisions for them if they are no longer able.

Sometimes decisions are already included in an “advance statement”, which has details about the care a person would like at the end of their life and what is important to them.

Help to stay comfortable

The following symptoms should be checked for and managed appropriately:

• Pain – not everyone is in pain in the last days of their life, but if someone is they should be offered help to relieve it quickly. To decide on the best type of painkillers for the person, an assessment should be carried out to discover how much pain they are in, and they should be asked how they would like to take their painkillers. Non-drug treatments for pain, such as emptying the bladder, should be considered.
• Managing breathlessness – breathlessness can be caused by treatable problems such as fluid in the lungs, and treatment should be offered to help. Even if a particular cause is not found, help should be given to relieve breathlessness, and the person may sometimes be offered medicine for this.
• Nausea and vomiting – if the person has nausea or vomiting, their doctor should check for possible causes, such as stomach or bowel problems, or side effects of treatments, and discuss the different treatment options with them and their associated risks and benefits.
• Managing anxiety, delirium and agitation – people often feel anxious in the last days of their life, and may feel agitated or become delirious (when a person can be confused or struggle to understand or remember, or their personality may change). The doctor should check for possible causes and discuss possible treatments with the person. For some people, a medicine may be offered. If that doesn’t work or if it causes unwanted drowsiness, the doctor should ask for advice from a specialist.
• Treating noisy breathing – sometimes saliva or mucus builds up in the person’s throat or chest and can’t be cleared, making a noise during breathing (which is sometimes known as a “death rattle”). This is unlikely to cause any discomfort to the person, but it might be upsetting, particularly for the people who are important to them. Any treatments that might help should be explained.
• Hydration – signs of dehydration should be checked for every day and help should be given to keep their mouth and lips moist. People who do want to drink should be given help to carry on drinking if they can still swallow. While they are drinking, it is important that they are checked for problems with swallowing or drinks going down the wrong way. However, some people may not want to drink in the last days of their life, and swallowing may become difficult. Their doctor might suggest giving them fluids through a drip or tube. This might make them more comfortable, but for a person who is already at the end of their life, it won’t necessarily help them live longer, and it might not be the best option for everyone.

Medication

The doctor should consider:

• whether to stop medicines that may no longer be needed, as they provide little benefit but could be causing side effects
• whether new medicines are required; discuss the benefits and any side effects of the medicine, including whether some side effects might or might not be acceptable to the dying person
• how any medicines should be given – there are several ways a medication can be given, such as through a skin patch or a syringe pump; the dying person should be asked about their preferences

‘Just in case’ medicines

Medicines are sometimes prescribed in advance for symptoms that might happen in the future. These medicines are often called “just in case” medicines and may be provided in a specially marked container called a “just in case” box.

Providing medicines in advance means there’s no delay in getting medicines that might be needed quickly to help with symptoms. This may be particularly important for people who are not in hospital.

Before “just in case” medicine is given, checks should be carried out to ensure the medicine is still the right type for the person’s symptoms. After they are taken, checks should be carried out at least once a day to see if their symptoms are improving or if there are any side effects.

For more information on treatment options, visit the NHS Choices End of Life Care Guide. 

Links To The Headlines

NICE urges doctors to treat dying patients as individuals. BBC News, December 16 2015

‘Arrogance’ of doctors STILL using banned death pathway because ‘they think they know what’s best for patients’. Daily Mail, December 16 2015

Junior doctors ‘must not be left alone to make snap life or death decisions’. The Daily Telegraph, December 16 2015

Dying patients should be offered water in their final hours, new guidelines say. The Independent, December 16 2015

Official warning to doctors: Show some respect for the care of dying patients. The Sun, December 16 2015