NICE produces new draft guidelines on caring for the dying

"England's health watchdog has put forward new draft guidance to improve the care of adults in their last few days of life," BBC News reports.

The guidelines, produced by the National Institute for Health and Care Excellence (NICE), have been proposed as an alternative to the controversial Liverpool Care Pathway, which was phased out in 2014.

What was the Liverpool Care Pathway?

The Liverpool Care Pathway 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 quality of care possible for dying patients in the last days and hours of life, whether they were in hospital, at home, in a care home or in a hospice.

It was designed to address concerns such as:

• patients being subjected to invasive testing and treatment that offered no chance of preventing death
• causing unnecessary pain and suffering by needlessly prolonging life

Why did it become controversial?

There were three main issues of controversy that were widely reported in the media:

• the assessment that a person was dying was not always made by an experienced clinician and was not reliably reviewed
• the dying person may have been unduly sedated as a result of poor prescribing methods
• there were claims that hydration and some essential medicines may have been withheld, which may have a negative impact on the dying process

It appeared that while the Pathway itself was sound, some staff may not have been following its recommendations correctly. For example, withdrawal of nutrition and fluids should never be a routine option, but done only if it is felt to be in the best interests of the patient, judged on a case-by-case basis.

What are the main recommendations of the new draft guideline?

A summary of the most important points is provided below. 

NICE has published the complete guideline, including relevant evidence (PDF, 3.4Mb).

Recognising when a person is in the last days of their life

If it is thought that a person may be dying, information should be gathered on their:

• clinical signs and symptoms, and medical history
• the person's goals and wishes, as well as their psychological and spiritual needs
• the views of those important to the person with respect to future care

The assessment of their clinical state should be made on a team basis and not just by one individual. The assessment should be reviewed at least every 24 hours.

Communication

Establish their communication needs, their current level of understanding and how much information they want to know about their prognosis. If patients or their families do want information, staff should discuss any concerns they have, while avoiding giving false hope.

Shared decision making

Find out how much the person wants to be involved in terms of shared decision making when it comes their care plan. As part of this process, find out whether the person has an advanced care plan or decision in place, as well as their goals and wishes.

Hydration

A dying person should always be supported if they wish to drink and are able to, though it is important to check for potential risks, such as swallowing problems.

Encourage friends and family to help with giving drinks and mouth care. Provide any necessary aids, such as sponges.

Discuss the risks and benefits of clinically assisted hydration, such as intravenous feeding, and their wishes about its use. It is also important to make clear that clinically assisted hydration is unlikely to prolong life.

Pharmacological interventions

Discuss what level of symptom control they would want in the last days of their life, as well as the possible benefits and harms of any medicines offered.

The plan for pharmacological interventions should be regularly reviewed.

How do I make my views known?

Consultation on the guidelines will finish on September 9 2015. To register a comment, you will need to belong to an eligible stakeholder organisation, such as a national organisation for people who use health and social care services, or an organisation that funds or carries out research.

Read more about the commenting and registration process.