Last reviewed 25 August 2015
Martin Hodgson considers the new NICE draft guideline on end-of-life care in the light of criticism of the implementation of the Liverpool Care Pathway for the Care of the Dying Adult. He also examines the suggestions made in this new guideline and what they will mean for providers of primary care.
The National Institute for Health and Care Excellence (NICE) has published a new draft guideline to support the NHS in providing high quality, compassionate care for people who are dying.
The draft paper, Care of the dying adult: draft guideline consultation , was published on 29 July and the consultation — which is open for comments from registered stakeholders — runs until 9 September. The anticipated publication date for the finalised guideline is December 2015.
The draft guideline
The draft guideline covers the clinical care of adults (aged 18 years and over) who are in the last few days of life. It makes a number of recommendations under the following headings:
Recognising when people are entering the last few days of life
Communication and shared decision-making with the person who is dying
The role of assisted hydration
The pharmacological management of pain, breathlessness, nausea and vomiting, anxiety, delirium, agitation, and noisy respiratory secretions.
NICE states that the guideline has been written for people who are dying, their families, carers, and other people important to them. It has also been written for healthcare professionals caring for people who are dying, in particular those working in primary care, care homes, hospices and hospitals, and for commissioners and providers of care for people in the last days of life.
Why was the guideline written?
The guideline was written following concerns being raised over the implementation of the Liverpool Care Pathway (LCP) for the Care of the Dying Adult.
The LCP was originally designed to implement the high standards of end-of-life care provided in the hospice movement to mainstream hospitals and the community. However, over the years, the LCP has been met with increasing concern from the public and from clinicians who feel that recognition that a person was dying was not always made by an experienced clinician and was often not reliably reviewed.
Additionally, in some cases under the LCP, the dying person may have been unduly sedated as a result of injudiciously prescribed symptom control medication. In other cases, hydration and essential medications may have been withheld or withdrawn.
It was feared that these unintended results of the pathway had a negative impact on the dying process. As such, a need for an evidence-based guideline for the clinical care of the dying adult was identified. It was recognised that this guideline would need to be focused on the care required when a person is judged by the multiprofessional clinical team to be within a few days of death.
NICE point out that this is different from other NHS end-of-life care initiatives, which are often aimed at improving care for people in the last year or so of a chronic condition.
Recognising when a person is in the last days of life
The draft guidance recognises that it is often difficult for clinicians to be certain about whether a person is dying. The recommendations are therefore intended to help them recognise when a person might be entering the last days of their life, or if they may be stabilising or recovering. NICE state that the guideline intends to supplement the individual clinical judgement of clinicians when making decisions about the certainty of prognosis, and to help manage any uncertainty.
If it is thought that a person may be entering the last days of life, NICE recommend gathering information on:
changes in the physiological, social, spiritual and psychological needs of the person
clinical signs and symptoms
the person’s medical history and the clinical context, including underlying diagnoses
the person’s goals and wishes
the views of those important to the person with respect to future care.
NICE suggest monitoring for changes in the person at least every 24 hours, and suggest seeking advice from colleagues with more experience of providing end-of-life care if there is uncertainty about whether a person is entering the last days of life.
Here NICE refer to the recommendations on communication in their guideline on patient experience in adult NHS services (CG138 — Improving the experience of care for people using adult NHS services). The right for people to be involved in discussions and make informed decisions about their care is highlighted as a key principle to be followed, as are the needs for privacy, dignity and respect.
The draft guidance states that clinicians should establish the communication needs and expectations of the dying person, including:
whether they would like a person important to them to be present when making decisions about their care
their current level of understanding that they may be nearing death
their cognitive status and if they have any specific speech, language or other communication needs
how much information they would like about their prognosis.
NICE suggest that the clinician should discuss the dying person’s prognosis with them (unless they do not wish to be informed) as soon as it is recognised that they may be entering the last days of life. Those important to the dying person should be included in the discussion if the person wishes.
The draft guidance specifies that clinicians should explore with the dying person and those important to them whether or not they have an Advance Care Plan in place, or have stated preferences about their care in the last days of life. Any anticipatory prescribing decisions or advance decisions to refuse specific treatments should be identified and implemented appropriately.
The guideline includes a recommendation that clinicians should establish the level of involvement that the dying person wishes to have in shared decision-making, and ensure that honesty and transparency are used when discussing the development and implementation of the dying person’s care plan.
NICE state that a named lead healthcare professional should be identified as responsible for encouraging shared decision-making in the person’s last days of life. Care plan discussions and decisions should be recorded in the dying person’s medical records and the care plan should be shared with all members of the multiprofessional care team.
Supporting the dying person to drink if they wish to and are able to is identified in the guideline as a key element of care. Clinicians are advised to check for any difficulties, such as problems swallowing, or risks inherent with drinking or aspiration. They are advised to discuss the risks and benefits of drinking with the dying person, the multiprofessional team and others involved in the care of the dying person. Frequent care for the person’s mouth should also be offered.
NICE use this heading to outline recommendations for prescribing pharmacological interventions for managing common symptoms in the last days of life.
In particular, clinicians are advised to assess the dying person’s level of pain and take all possible causes into account when making prescribing decisions for managing pain.
NICE state that options for treating nausea and vomiting should be discussed with the dying person and those important to them. Non-pharmacological methods for treatment should also be considered.
Regarding “anticipatory prescribing” clinicians are advised to assess what medication the person might need to manage symptoms likely to occur during their last days of life (such as agitation, anxiety, breathlessness, nausea and vomiting, noisy respiratory secretions and pain). They should discuss any prescribing needs with the dying person, those important to them and the multiprofessional team.
Medication should be prescribed on an individualised basis as early as possible for people with anticipated or changing needs for symptom control.
The draft NICE guidance has been generally well received. Commenting on the publication of the consultation documents, Claire Henry, Chief Executive of the National Council for Palliative Care, said:
“People need to have meaningful choice and be involved in decisions about their end-of-life care, allowing them to maintain comfort and dignity until they die. That’s why we welcome the NICE Care of the Dying Adult draft consultation, which outlines evidence-based guidelines for the care of the dying adult throughout the care sector. However, it is imperative that in order to provide high standards of individualised care and support at the end-of-life, health and care staff are provided with ongoing training as end-of-life care is everybody’s business and there is only one chance to get it right.”
Considering the issue from the primary care angle, Dr Catherine Millington-Sanders, Clinical End-of-life Care Champion at the Royal College of General Practitioners, said:
“It is crucial that patients approaching the end of their lives receive high quality and compassionate care that is tailored to their own needs and wishes. This guidance highlights how important it is for people to be involved in having discussions about their care. The clear difference between this and the Liverpool Care Pathway is that this is not a ‘pathway’ or process to be followed. This provides guidance on what good practice looks like and gives practical advice on issues that need to be considered when caring for a person in their last days of life.”
One Chance to Get it Right
In addition to the new draft guideline, the summer has also seen the Department of Health publish information on the progress of its wider work improve end-of-life care.
One Chance to Get it Right was originally published in June 2014 by an alliance of organisations involved in palliative care, in response to the criticism of the Liverpool Care Pathway set out in the More Care, Less Pathway review.
One chance to Get it Right: One Year on Report, published in July 2015, describes the progress organisations have made on specific commitments, particularly:
the new Care Quality Commission inspection regime for end-of-life care
the new NICE guidance
actions to improve education, training and research
action on professional regulation
the implementation of new priorities for care.
End-of-life care is a highly sensitive subject and requires constant reappraisal in order to be sure that those entering the last days of their life, and their loved ones, are able to make the decisions they want in order to ease the process. The new guideline may not suggest sweeping changes to the way end-of-life care is handled in this country, but instead highlights the need to tailor approaches to the wants and needs of each patient. This means that rather than imposing a pre-established model of care on each person — as was the case with the LPC — a multiprofessional care team can provide quality end-of-life care to every individual.