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Care of Dying Adults

Tony Bonser, Chair, People in Partnership, NCPC & Dying MattersTony Bonser, Chair, People in Partnership, NCPC & Dying Matters

News and updates from today’s conference looking at improving care of the dying adult in the last days of life and ensuring adherence to the national NICE quality standard in practice.

Chair of the conference; Claire Henry MBE, Director of Improvement and Transformation, Hospice UK opened by setting the context for the day saying that the wider picture leading up to end of life care has an impact in the last few days of life.  She said; "people are living longer and dying with more co-morbidities which adds to the comlexity of caring for people at end of life care".  She said we know that there is an increasing demand for palliative care.

Putting personal experience first
Tony Bonser,
 Chair, People in Partnership, The National Council for Palliative Care and Dying Matters

Tony discussed the importance of asking those nearing end of life what they want to happen so that they have a choice and are treated as an individual. 

Pre-Conference Abstract:WHAT DO YOU WANT?
Patients are people too. I am involved in EoLC because of my personal experience caring for my son during his terminal illness. I dream we can work towards a system of fully integrated, holistic care for those near death. This will involve a culture-change in the relationship between medical professionals and patients/carers, in line with the patient-centred philosophy embodied in the NHS Constitution, and with the recommendations of the Francis Report, the Neuberger Report, “One Chance to Get it Right,“ and the NICE guidelines 2016, seeing patient and professional in a partnership, defining and meeting the perceived needs of the patient. Communication will be central to this development. Professionals and patients must evolve a common language comprehensible to both, and an atmosphere in which patients and carers feel empowered to become involved in the decision-making process, and thus to take back some control of their condition and its management. Great sensitivity on the part of the professionals as to the emotional effects of their discussions on patients will be needed along with an understanding that everyone is an individual, with specific and personal needs, and that “one size fits all,” will not meet their needs.

PowerPoint Presentation

Meeting the National Quality Standard for Care of Dying Adults in the last days of life
Professor Sam H Ahmedzai, 
Specialist Committee Member, Care of Dying Adults in the last days of life Quality Standard, and Chair, Guideline Development Group for the Clinical Guideline NG31 on Care of the Dying Adult, NICE

NICE Quality Standard QS144

Pre-Conference Abstract 
In March 2017, NICE published a new Quality Standard QS144, specifically for the care of adults in the last days of life.  This was developed from the 2015 full NICE guidance NG31, which made over 70 recommendations for many aspects of the clinical care at the end of life.  As opposed to a full guideline, a NICE quality standard focuses on a much smaller set of key recommendations called ‘Statements’ and develops these in a way that allows healthcare planners and service providers to make quality improvements for implementation, and to help them monitor the changes.

To accompany the statements NICE provides a structured set of Quality measures, which cover Structure, Process and Outcome.  Also for each of these quality measures, NICE suggests how appropriate data can be sought to document progress for the quality improvement. 

There are four statements within QS144:
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.

I will briefly describe the process of how the full NG31 guidance was shaped into these four statements.  Then I will explore the rationale behind the statements, and advice given by NICE about how they can be implemented and monitored.  For example, with respect to Statement 4, the rationale was described as:
“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.”

Again for Statement 4, the specific advice about quality measures and their suggested data sources was as follows:
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.
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.

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).

I will invite discussion about the appropriateness, measurability and achievability of these quality measures for this specific quality statement, or the other three statements.  Other aspects of this Quality Standard that services find challenging, such as education and training of staff, coping with insufficient staff resources, and competing with other local NHS resources, will be discussed. Are some quality measures or higher or lower priority or indeed, are some considered irrelevant.

PowerPoint Presentation

Future related events: 

Improving End of Life for People with Dementia

Effective Non-Medical Prescribing in End of Life Care


15 January 2018

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