End of life care for infants, children and young people with life limiting conditions: summary of NICE guidance

Click for article

Children and young people can have a wide range of life limiting conditions and may sometimes live with such conditions for many years. This guideline recommends that end of life care be managed as a long term process that begins at the time of diagnosis of a life limiting condition and entails planning for the future. Sometimes it may begin before the child’s birth. It is part of the overall care of the child or young person and runs in parallel with other active treatments for the underlying condition itself. Finally, it includes those aspects related to the care of the dying.

Hospices still outperform hospitals on quality of care at end of life

Click for article

Bereaved people in England rate the care provided by hospitals at the end of their relative’s life lower than that provided by hospices, care homes, and services in the community, show the results of a survey published by the Office for National Statistics.

Eyes on Evidence: Issue 61; May 2014

Here are the latest topics for this month from NICE – Eyes on Evidence.

Adenotonsillectomy in children with obstructive sleep apnoea
A randomised controlled trial in the USA finds that adenotonsillectomy does not improve cognitive function in children with obstructive sleep apnoea syndrome, although it does have a beneficial effect on symptoms of sleep apnoea.

Ibuprofen compared with indometacin for patent ductus arteriosus
A Cochrane review reports that ibuprofen is as effective as indometacin for closure of patent ductus arteriosus in preterm or low-birthweight babies, and is associated with a lower risk of necrotising enterocolitis, reduced time on assisted ventilation and a lower risk of negative effects on renal function.

Gallbladder removal with or without bile duct imaging
A retrospective cohort study of US data raises caution about interpreting the benefits of using bile duct imaging during gallbladder removal.

Collaborative care for depression
A cluster randomised controlled trial in English general practices suggests that collaborative care delivered by mental health workers acting as care managers is more effective at reducing depression than usual care.

End-of-life preferences of people with terminal illness who live alone
An Australian cohort study finds that around half of people with terminal illness who live alone would prefer to die at home, but only a small proportion manage to do so.

Evidence Updates
NICE has recently published Evidence Updates on:

• Venous thromboembolic diseases -Interventions to reduce substance misuse among vulnerable young people

Eyes on Evidence helps contextualise important new evidence, highlighting areas that could signal a change in clinical practice. It does not constitute formal NICE guidance. The commentaries
included are the opinions of contributors and do not necessarily reflect the views of NICE.

 

The Spring 2014 : The End of Life Journal is now online

The Spring 2014 issue of the free journal for nurses caring for dying people at home, in hospitals and care homes is now available online.  This issue is mobile-friendly making it easier to read on your mobile device or tablet.

Articles include

CLINICAL PRACTICE DEVELOPMENT

• Eating/feeding issues in dementia: improving the dining experience

NURSING CASE REVIEW

• Holistic assessment of a woman admitted to a hospice with anxiety

LEGAL DISCUSSIONS

• Legal aspects of end-of-life care in severe anorexia nervosa

PROFESSIONAL ISSUES

• The emotional labour of caring for patients at the end of life

PERSONAL REFLECTIONS

• Barriers to effective end-of-life nursing care out-of-hours

Divided in dying

Divided in dying

This report highlights the need for better advance care planning at the end of life and the urgent need to put in place workable guidance to replace the Liverpool Care Pathway as soon as possible. The report found that almost half of those who have lost someone close to them through a short or long illness, feel their loved one died badly (45%). In cases where the dying person had recorded their end of life wishes, relatives and friends are more likely to report that they had a good death (58%).

Compassion in Dying 

• Report
• Compassion in Dying – news

Care of the dying patient in the community

CLINICAL REVIEW

BMJ 2013; 347 doi: http://dx.doi.org/10.1136/bmj.f4085 (Published 3 July 2013)

Cite this as: BMJ 2013;347:f4085

 CME
General practice / family medicine
End of life decisions (ethics)
End of life decisions (geriatric medicine)
Extract from BMJ:The consensus from international studies of patient preferences is that, given adequate support, most people would prefer to die at home. However, more than half of all deaths in the United Kingdom occur in hospital, with only 18% of people dying in their own home. Suggested reasons for this include a lack of anticipatory care planning, poor coordination between healthcare agencies, and insufficient community resources. National and local policies now focus on facilitating home deaths, and recently there has been a small increase in the proportion and absolute number of people dying at home.

The demographics of deaths across Europe are changing with the ageing population, with deaths from dementia, cancer, and chronic diseases becoming more common.  Caring for such patients in hospital will probably become unsustainable in terms of capacity, cost, and patient satisfaction. The focus of end of life care is therefore shifting to the community—to homes and care homes—where the role of the general practitioner, with support from the community palliative care team, is key. The onus is on all health and social care professionals to work collaboratively across settings to enable patients to receive high quality end of life care in the place of their choice.

LCP Independent report

 Independent report: Review of Liverpool Care Pathway for dying patients

This report sets out recommendations regarding the Liverpool Care Pathway and end of life care following an independent review of the LCP chaired by Baroness Julia Neuberger.

The recommendations include:

• phasing out the LCP and and replacing it with an individual end of life care plan
• a general principle that a patient should only be placed on the LCP or a similar approach by a senior responsible clinician in consultation with the healthcare team

• unless there is a very good reason, a decision to withdraw or not to start a life-prolonging treatment should not be taken during any ‘out of hours’ period
• an urgent call for the Nursing and Midwifery Council to issue guidance on end of life care

• an end to incentive payments for use of the LCP and similar approaches

• a new system-wide approach to improving the quality of care for the dying

End of Life Journal – Summer issue

The Summer 2013 issue of the free journal for nurses caring for dying people at home, in hospitals and care homes is now available online.  This issue is mobile-friendly making it easier to read on your mobile device or tablet.  Articles include:

CLINICAL PRACTICE DEVELOPMENT

• Lymphoedema management in palliative and end-of-life care

CLINICAL SKILLS

• Communication vignettes: ‘What if I meet “Old Nick”, nurse?’

RESEARCH

• End-of-life care for the British Asian Hindu community: Preferences and solutions

PERSONAL REFLECTIONS

• Role modelling GSF principles of end-of-life care to care homes

CLINICAL SKILLS

• St Christopher’s Hospice Clinical Guidelines: Anticipatory end-of-life care medication for the symptoms of terminal restlessness, pain and excessive secretions in frail older people in care homes

CLINICAL RESEARCH/AUDIT

• Implementing stock end-of-life medication in UK nursing homes

How policy and law support end of life care practice

Care at the end of life: how policy and the law support practice

British Journal of Nursing, Vol. 22, Iss. 10, 23 May 2013, pp 580 – 583

New version of end of life care quality assessment tool launched

 

Extract from National End of Life Care Programme website

The National End of Life Care Intelligence Network (NEoLCIN) has released the new version of its End of Life Care Quality Assessment (ELCQuA) tool, which is now structured around the NICE quality standard for end of life care for adults.

ELCQuA is a free, online self-assessment tool designed to support local service improvement and the commissioning of end of life care services. It can be used by any organisation caring for people at the end of life, across the health, social care, voluntary and private sectors. This includes commissioners, local authorities, acute hospitals, primary care, community, palliative care and ambulance services.

Read more about it by following the link at the top of this post.

Opioid prescribing for cancer pain

Opioid prescribing for cancer pain during the last 3 months of life: associated factors and 9-year trends in a nationwide United Kingdom cohort study

Posted: 10 Dec 2012 12:00 AM PST

Source: Journal of Clinical Oncology

Purpose: To determine time trends and characteristics associated with opioid analgesic prescribing to patients with cancer who are approaching the end of life.

Patients and Methods: This population-based cohort study used data on 29,825 patients diagnosed with five common cancers – lung (34.2%), colorectal (19.9%), female breast (21.6%), prostate (19.1%) and head and neck (5.2%) – in the United Kingdom General Practice Research Database (GPRD) who died between 2000 and 2008.  Opioid prescription rates in the last 3 months of life were described.  Characteristics associated with opioid prescribing were investigated by using generalised estimation equation models. Results: In the last 3 months of life, 43.6% (95% CI, 43.0% to 44.2%) of patients received at least one prescription of opioids: morphine (33.4%; 95% CI, 32.8% to 33.9%), diamorphine (11.6%; 95% CI, 11.2% to 11.9%) and fentanyl family (10.2%; 95% CI, 9.8% to 10.5%).  Over time, prescription rates …

Review of Liverpool Care Pathway

Liverpool Care Pathway review launched

An independent review is being launched into the Liverpool Care Pathway (LCP), following weeks of negative stories in the media. The… <<Read More>>

For this and other healthcare news from the National Health Executive Online, please note that they also publish a digital news version – see the November/December 12 issue.

Helping GPs to support people to live and die well

National End of Life Care Programme (NEoLCP)

Find your 1%: helping GPs to support people to live and die well
This resource pack has been developed to be a practical tool to help GPs identify those patients who may be in their last year of life and talk to them about their preferences. It contains information on: identifying people at the end of life; having end of life care conversations; putting plans in place; managing and co-ordinating care; and space for GPs to include local information such as the telephone numbers of hospices, palliative care teams and pharmacies which stock palliative care drugs.

• Resource pack
• NEoLCP – publications

BJN: Dying to care: dignity at end of life

British Journal of Nursing, Vol. 21, Iss. 21, 22 Nov 2012, pp 1295

November is always a sad month for me -full of past but ever-present family bereavement and sadness. It always makes me dwell on dying and death from a personal and professional perspective and from both, I see the development of the Liverpool Care Pathway (LCP) as a significant improvement in care.

The full-text of this article is available to download at www.internurse.com.  An Athens account is required.

BMJ articles: End of Life Care Pathways

Using end of life care pathways for the last hours or days of life

Kirsty Boyd and Scott Murray

Palliative care for all?

Rosemarie Anthony-Pillai

Palliative care for all?

Rosemarie Anthony-Pillai

How do we make the Liverpool care pathway’s laudable aspirations reality?

Eileen Palmer

Specialist nursing care enables more people at end of life to die at home and reduces hospital treatment, study finds

Zosia Kmietowicz

The impact of the Marie Curie Nursing Service on place of death and hospital use at the end of life

The Nuffield Trust

This report sets out the results of a study, commissioned by Marie Curie Cancer Care, examining the impact of the Marie Curie home-based nursing service on patient outcomes and hospital usage. It examines whether the home-based nursing service helps more people to die at home, reducing both hospital use and costs at the end of life.

• Report
• Research summary
• Related blog
• Press release
• Nuffield Trust – publications

NHS Networks: End of Life Diabetes Care strategy

New end of life diabetes care strategy

Patients with diabetes who are at the end of life have a unique set of care needs relating to health and social care. However, end of life diabetes care has been recognised as an area lacking quality standards and guidance on best clinical practice and commissioning.

Read more »

Communicating with dying patients: a time to listen more than talk

Communicating with dying patients: a time to listen more than talk
from British Jrnl of Community Nursing by Brian Nyatanga

British Journal of Community Nursing, Vol. 17, Iss. 8, 03 Aug 2012, pp 369

King’s Fund: Palliative care articles

School for Social Care Research, London School of Economics and Political Science End of life care: methods review This review provides an overview of the range of research methods that have been commonly used in end of life care research and their relevance for social care. It provides a policy and service context for understanding end of life care research in social care and, using examples from relevant research, considers the advantages and disadvantages of different research methods and tools. The particular ethical challenges and practical issues that may arise are discussed along with some strategies and sources of support to address them. Review School for Social Care Research – publications

Helen & Douglas House A review of palliative care for children and young adults in the Thames Valley Helen & Douglas House has commissioned and authored a collaborative review of palliative care need and provision in the region for patients up to the age of 40 years. The findings of the review are presented as a consultative report, with provisional recommendations at national, regional and organisational levels. It highlights a number of key findings, including that there is a lack of palliative care studies relating to young adults. Report Executive summary Helen & Douglas House – useful resources

St Christopher’s Hospice – valuable end of life information

Vol 2 Issue 1 of The End of Life Journal is now available free online from St Christopher’s Hospice

Our thanks to Dr Trevor Rimmer for bringing this to our attention. You may have already signed up to it but if not registration is needed, but it is free.

Clinical review

• The importance of recognising depression following a stroke

Nursing case review

• Assessment of a breathless patient in end-stage heart failure in A&E

Clinical skills

• Communication vignettes: Telling a child that her dad is dying

Personal narrative

• A palliative holistic approach to  MND using music therapy

Legal discussions

• Case law on artificial nutrition and hydration since Bland

National End of Life Care Programme update

• Achieving quality end-of-life care in the acute hospital setting: the new ‘How to’ guide
• Achieving quality end-of-life care within the prison population: new guidance

See End of Life Care Information website at: http://endoflifecareinformation.stchristophers.org.uk/

NHS National End of Life Care Programme

End of life care co-ordination: core content
This national information standard specifies the core record content to support the provision of high-quality co-ordinated care at the end of life. The standard facilitates consistent recording of information by health and social care agencies and, with the consent of the individual, supports safe and effective management and sharing of information.

• Information standard
• Implementation guidance
• Record keeping guidance
• Press release
• NHS National End of Life Care Programme – further resources and information

Guide for commissioners on end of life care for adults

National Institute for Health and Clinical Excellence (NICE). This guide aims to support commissioners in designing high quality, evidence-based services to improve outcomes for patients and to help the NHS make better use of resources. It also includes an end of life care commissioning and benchmarking tool to help users determine the level of service that might be needed locally and to help cost and identify potential savings associated with commissioning end of life care services.

• Guidance
• Commissioning and benchmarking tool
• NICE – press release

NHS Networks: End of life care for adults quality standard

End of life care for adults quality standard: consultation comments response table

The National Institute for Health and Clinical Excellence has recently published consultation comments relating to the End of Life Care for Adults quality standard which was published last November.

Read more »

NICE quality standard for end-of-life care

National Institute for Health and Clinical Excellence (NICE)

Quality standard for end of life care for adults
This quality standard includes 15 statements for the care of adults (18 years and older) with advanced, progressive, or incurable conditions who are approaching the end of their life and are expected to die within the next 12 months. The end of life definition also includes adults with existing conditions who are at risk of dying from a sudden, acute crisis in their condition, or those with life-threatening acute conditions caused by sudden catastrophic events. It also covers support for the families and carers of such people.

• Quality standard
• Summary of 15 statements and links to related documents
• NICE – press release

eLearning tools for long term conditions

http://www.dh.gov.uk/health/2011/07/ltc-e-learning/

There are a number of online resources available to help the NHS and social care workforce in their work with people suffering from long term conditions.

Please note you will need to register with the site provider to access these toolkits.

Care planning e-learning toolkit: A 90 minutes introduction in 3 modules to personalised care planning – what it is, how it can benefit patients and staff and the skills, approaches and behaviours needed for effective delivery. The tool also uses case studies to illustrate and has a separate workbook. It concludes with a learning assessment.

Self care e-learning toolkit: These three short modules are designed as an introduction to supporting people with long term conditions to self care. By the end of the learning, healthcare professionals will be able to understand their role in supporting people to self care, and the types of support that help people manage their condition and make informed choices about their health and care.

Information prescriptions e-learning toolkit: A 90 minute introduction to Information Prescriptions, and how they support people with LTCs to manage their condition. The 4 modules focus in the skills and competencies needed to asses and respond to individual patients’ needs for information through an information prescription.

End of life care e-learning toolkit: Aims to enhance the training and education of all those involved in delivering end of life care to people, so that well-informed high quality care can be delivered by confident and competent staff and volunteers, across health and social care.

Extract from Dept of Health