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Care of Dying Adults in the last days of life: Implementing the 2017 NICE National Quality Standard

The New National Quality Standard for Care of Dying Adults in the last days of life has been published by NICE in March 2017. This conference looked at implementing and ensuring adherence to the quality standard in practice.

Speaker Updates and Presentations

Putting personal experience first

Ian Leech, Community Engagement Manager, St. Giles Hospice

  • end of life care: a personal journey
  • ensuring engaged, informed individuals and carers
  • improving information about what to expect at the end of life

Ian Leech’s Full Presentation Click Here

In his presentation Ian Stated: 

“I don’t like calling it person centred care – All care should be person centred”

“As parents we were made very much a part of the team”

“If we are to deliver people/person centred care it needs have 100% buy in and if you have got total but in you have to ask the questions”

“Signposting is important - We often learnt more from hospital waiting rooms than from health professionals. Some of the signposts you should be told by the receptionist/ health professional”

“Language is key ie incurable, not “there’s nothing more we can do”

“It was really important to have the time to understand and digest the information given to us”

“District Nurse who took control – we needed someone in charge and to support us”

Ian Leech’s Presentation Abstract:

In August 2008 Ian’s twenty year old daughter was diagnosed with cancer, initially the prognosis was positive, but sadly things do not always go to plan and on April 1st 2008 we were told Melissa’s illness was incurable and six weeks later, in the early hours of Sunday 11 May, she died.

In his presentation Ian talked about what made her end of life care special, the conversations she had with her family and they had with her.  Ian session is a description of a day in his and his families life at that time and explains why the Do not Resuscitate conversation was so important.  Ian discussed the importance of relationship building, the use of language and how communication mattered.  He also explains the significance of Fernando Torres and the part he played in his daughter’s life and death.

Ian Leech’s Biography:

Ian lives in Burton on Trent in Staffordshire and helped to care for his daughter Melissa after she was diagnosed with non-Hodgkin’s lymphoma in August 2007.  Following her death in May 2008, Ian has used his experience to help others.  Ian speaks to health professionals across the country on improving the quality of end of life care and bereavement support.  He was appointed Community Engagement Officer at St. Giles Hospice in July 2013 and has successfully developed an Understanding Bereavement workshop which he delivers across the St Giles catchment. He is a People in Partnership Member of the National Council for Palliative Care and a Dying Matters Champion.  Ian also facilitates the workshops for NCPC’s Compassionate Employers Programme.  In 2012, Ian was an Olympic Torchbearer.

Ian’s role as Community Engagement Officer is to take the wide and varied services of St Giles Hospice into communities across the St. Giles Hospice catchment area to enable people to have a better understanding about end of life care and bereavement support.  Part of his role is centred around changing attitudes in communities toward death, dying and bereavement.  His work involves working with volunteers and other staff to deliver projects in communities across St Giles’ catchment area. 

Ian has successfully piloted an Understanding Bereavement workshop which he delivers in schools, colleges, businesses and community groups.  Ian has set up craft groups and computer socials for the elderly within the hospice and his work around Dying Matters includes his ‘conversation board’ which encourages conversations around death and dying.  Ian enjoys cycling and walking, is a Dying Matters champion and in 2012 was an Olympic Torchbearer.

Improving the Care of Dying Adults

Anita Hayes, Quality Improvement Lead, The National Council for Palliative Care

  • what does good look like?
  • meeting the six ambitions for end of life care
  • outcome measures for care at the end of life

Anita Hayes’s Full Presentation Click Here

In her presentation Antia stated: 

“Patients time is the most important currency in health care” Prof Brian Dolan – we need to really thing about the patients time/ do we really think about this?

In May 2015 the Ombudsman report into complaints about end of life care had 12 cases, in all settings and they had emerging themes including:

  • Not recognizing that people are dying or responding to their needs
  • Poor symptom control
  • Poor communication
  • Inadequate out-of-hours services
  • Poor care planning
  • Delays in diagnosis and referrals for treatment

We need to look at these in terms of the 6 ambitions for Palliative care

“Recognise clinical uncertainty of recovery as well as patients who are likely to die”

“Ask patients about their understanding and their goals / those important to them early enough to make a difference”

“Communicate well and work as a team”

“See the person … the little things are important”

“Plan ahead”

Anita Hayes’s Biography:

Anita was the former Programme Director for End of Life Care at NHS Improving Quality responsible for leading end of life care improvement for 3 years working with the team to deliver the roll out of NHS IQs two national programmes – The Transforming Care in Acute Hospitals and Electronic Palliative Care Coordination Systems (EPaCCS).

Working in close partnership with NHS England and the National End of Life Care Intelligence Network in Public Health England she was responsible for the development and maintenance of the National Information Standard (ISB150) for End of Life Care and was the chair of the national EPaCCS implementation and dataset management group.

Anita has over 33 years of NHS and private sector health and care experience. As a registered nurse and lecture practitioner she worked in clinical practice in senior nursing and education roles until 2000 when she took on a project management role working with the cancer services collaborative and became part of the design and development team supporting improvements in cancer services. Her previous roles have included Nurse Director for the Kent and Medway Cancer Network, Service Improvement Lead with the Cancer Services Collaborative and nurse teacher. Anita has also worked in clinical service development and management within the private sector for a number of years. Between 2008 to 2013 she worked as the deputy director of the National End of Life Care Programme supporting implementation of the 2008 End of Life Care Strategy for England. She has completed a Harvard University leadership course and written articles for the European Palliative Care Journal of Nursing and co-authored a book ‘Pathways Through Care at the End of Life: A Guide to Person-Centred Care’ published 2013

Anita is absolutely passionate about improving the experience of care for all approaching the last phase of life and believes that dignity, respect and high quality end of life care are a fundamental human right for all. She is currently leading the development of an exciting and  innovative new programme with NCPC  funded by Macmillan Cancer Support and seeking to contribute to ongoing improvement and learning about how we best meet the needs of all those with end of life care needs.

EXTENDED SESSION: The New 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 & Chair, Guideline Development Group for the Clinical Guideline NG31 on Care of the Dying Adult, NICE, Emeritus Professor, The University of Sheffield, End of Life Care Audit Lead, Royal College of Physicians & NIHR National Specialty Lead for Cancer Research, Outside the Acute Hospital

  • priorities and challenges in implementing the new NICE Quality Standard on Care of the Dying Adult in last days of life
  • case studies - implementation in practice
  • monitoring adherence against the standard in practice
  • the role of audit and research in improving end of life care

In his presentation Professor Sam H Ahmedzai stated: 

“Lets move away from this blanket approach have evidence base individualised care plans with better staff training”

“The purpose of this quality standard is to focus a few key items that need addressing and guidance on”

“The care plan should be individualised and frequently reviewed”

“Ask about the persons goals and wishes and the views of those important to them and also the medical history – don’t make big decisions about a person without looking at there history”

“Each statement also have quality measures attached to them”

“There is a new form called the respect form for Not just DNACPR but what care people want at the end of life – it is currently being slowly rolled out across trusts – only 13/14 at the moment and research is being done along side it.”

Professor Sam H Ahmedzai Abstract:

Are we making progress with the NICE clinical guideline on care of the dying adult?

NICE published its first clinical guideline (NG31) on care of the dying adult in December 2015.  The focus of NG31 was on the ‘last days’ of life.  It included recommendations on 5 topics –

  • Recognition of dying – and the uncertainties around this
  • Communication with the dying person, the people important to them and the multiprofessional team
  • Shared decision-making – taking into account the dying person’s wishes and developing an individualised care plan
  • Maintaining hydration – by mouth and by clinically assisted means
  • Pharmacological interventions for common symptoms and problems
  • Anticipatory prescribing – in an individualised way.

Following the withdrawal of the Liverpool Care Pathway (LCP) in 2014, the new guidance emphasised the need for clinical teams to develop individualised care plans in accordance with the wishes and preferences, wherever possible, of the dying person. 

Many of the recommendations were made by the expert committee’s consensus in light of poor quality or conflicting research evidence.  Indeed four additional research recommendations were also made to address the poor evidence base for clinical care in the last days of life.

Shortly after the publication of NG31, the Royal College of Physicians (RCP) of London published the results of its 2015 national audit on care of dying adults in English hospitals. This was the first such audit to be undertaken since withdrawal of the LCP.

In this presentation Professor Sam H Ahmedzai will review progress in meeting the NICE recommendations, making use of feedback from workshops held during 2016 after the RCP national audit, and using the example of a regional collaborative approach in Northern Ireland.  He will also discuss progress in addressing the weaknesses in the research evidence. 

Professor Sam H Ahmedzai conclusion is that whilst there is clear evidence that broadly clinical care delivered to dying adults in hospital has improved since the days of the LCP approach, there are still several aspects of service organisation and clinical care that need significant improvement to raise standards and reduce inequalities.  Many of these aspects will be addressed by a new NICE guideline being developed on service delivery for people in the last year of life; and in future HQIP indicators for end of life care.

Professor Sam H Ahmedzai Biography:

Sam is Emeritus Professor in the Medical School at University of Sheffield, with 30 years’ experience of being consultant physician in palliative medicine.  His research covers - cancer pain and opioid drugs; symptom management in advanced diseases; holistic needs and quality of life assessment; improving supportive care services for cancer and chronic disease patients; advocating patient and public involvement in cancer research. 

Sam chaired the 2015 NICE guideline for care of the dying adult (NG31) and he is clinical advisor to the current NICE guideline committee on service delivery in the last year of life. He was clinical lead for the Royal College of Physicians of London’s national audit of end of life care, published in March 2016.  He is NIHR national specialty lead for cancer research outside the acute hospital and chairs the NCRI’s Clinical Studies Group on Supportive and Palliative Care.  Sam is editor in chief of ‘Current Opinion in Supportive and Palliative Care’ and of the Oxford Textbook series on ‘Supportive Care’.

Future events of interest:

Transforming End of Life Care in Acute Hospitals
Wednesday 12 July 2017 
Manchester Conference Centre, Manchester

Effective Non-Medical Prescribing in End of Life Care
Friday 6 October 2017 
De Vere West One Conference Centre, London


12 June 2017

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