Meeting NICE Quality Standard QS144 for Care of Dying Adults in the Last Days of Life

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1 Care of Dying Adults in the Last Days of Life Improving and ensuring adherence to the NICE Quality Standard Healthcare Conferences, London, January 2018 Meeting NICE Quality Standard QS144 for Care of Dying Adults in the Last Days of Life Sam H Ahmedzai FRCP Emeritus Professor, University of Sheffield Chair, NICE Guideline Committee & Specialist Member of Quality Standard Committee

2 Disclaimer This work was undertaken by the speaker on behalf of NICE and the National Clinical Guideline Centre. The views expressed in this presentation are those of the presenter and not necessarily those of NICE or the Guideline Centre.

3 Clin Med 2015 BMJ 2015

4 Where do people actually die in England? Hospital deaths stable Deaths at home and in care homes rising Hospice deaths stable

5 What are people dying from?

6 Topics covered in guideline NG31 Recognising when a person may be in the last days of life Communication Shared decision-making and individualised care planning Maintaining hydration Pharmacological interventions Anticipatory prescribing Underlying ethos Individualised care delivered with sensitivity and compassion

7 NICE Quality Standard (QS144) for last days of life - Statements Statement 1. Adults who have signs and symptoms that suggest they may be in the last days of life are monitored for further changes to help determine if they are nearing death, stabilising or recovering. Statement 2. Adults in the last days of life, and the people important to them, are given opportunities to discuss, develop and review an individualised care plan. Statement 3. Adults in the last days of life who are likely to need symptom control are prescribed anticipatory medicines with individualised indications for use, dosage and route of administration. Statement 4. Adults in the last days of life have their hydration status assessed daily, and have a discussion about the risks and benefits of hydration options.

8 NICE Quality Standard (QS144) for last days of life Statement 4 Adults in the last days of life have their hydration status assessed daily, and have a discussion about the risks and benefits of hydration options.

9 NICE Quality Standard (QS144) for last days of life Statement 4 - Rationale Drinking is a basic human need, but as death approaches the desire to take in fluid can diminish. Daily assessment enables changes in hydration status and associated symptoms to be identified, along with problems with oral hydration and any need for clinically assisted hydration. Discussing the risks and benefits of options for hydration with the person who is dying, and those important to them, allows their wishes and preferences to be taken into account. The normal route of hydration is oral, but some people who want to drink may not be able to do so, and may need support to drink or may benefit from clinically assisted hydration. Inadequate hydration can result in distressing symptoms, such as thirst and delirium, and can sometimes lead to death. However, drinking and clinically assisted hydration are not without risks; there can be swallowing problems and the risk of aspiration with drinking, and excessive assisted hydration can cause swelling and breathing difficulties.

10 NICE Quality Standard (QS144) for last days of life Quality Measures Quality Measures for Statement 4 Structure a) Evidence of local arrangements to ensure that adults in the last days of life have their hydration status assessed daily. Data source: Local data collection. b) Evidence of local arrangements to ensure that adults in the last days of life, and the people important to them, have discussions about the risks and benefits of hydration options. Data source: Local data collection.

11 NICE Quality Standard (QS144) for last days of life Statement 4 Process a) Proportion of adults recognised as being in the last days of life who have their hydration status assessed daily. Numerator the number in the denominator who have their hydration status assessed daily. Denominator the number of adults recognised as being in the last days of life. Data source: Local data collection based on audits of patient care records. b) Proportion of adults recognised as being in the last days of life who have a discussion about the risks and benefits of hydration options. Numerator the number in the denominator whose individual care plan shows that there has been a discussion about the risks and benefits of hydration options. Denominator the number of adults recognised as being in the last days of life. Data source: Local data collection based on audits of patient care records and individual care plans. National data on the proportion of people who died in hospital who had a discussion regarding drinking and need for assisted forms of hydration are reported in the Royal College of Physicians' End of life care audit Dying in hospital report for England.

12 NICE Quality Standard (QS144) for last days of life Statement 4 Outcome a) Proportion of adults who felt comfortable in the last days of life. Data source: Local data collection based on feedback from adults in the last days of life and the people important to them. b) Proportion of bereaved people who feel satisfied that the person who has died was supported to drink or receive fluids if they wished. Data source: Local data collection. National data on bereaved people who agreed that the person who died had support to drink or receive fluid if they wished in the last 2 days of life are reported in the Office for National Statistics' National survey of bereaved people (VOICES).

13 NICE Quality Standard (QS144) for last days of life What are the important issues about implementing NICE QS144? Are they appropriate? Are they measurable? Are they achievable? Education and training Staff resources Prioritisation in a NHS under pressure

14 RCP 2016 Audit of EOLC in hospitals Individual plan of care Drinking In the last 24 hours of life there was documented evidence that: 63% of cases the patient s ability to drink had been assessed 39% of patients were documented as drinking 45% of patients had been supported to drink.

15 RCP Audit of EOLC in hospitals Individual plan of care Clinically assisted hydration In the last 24 hours of life - 43% of patients had clinically assisted hydration: PEG 2% NG 5% Subcut 6% IV 87% BUT wide national variation in hydration assessment

16 New NICE guidance soon ready for consultation Service delivery of EOLC in last year of life