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

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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.

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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 Updatesnice_logo
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

NURSING CASE REVIEW

LEGAL DISCUSSIONS

PROFESSIONAL ISSUES

PERSONAL REFLECTIONS

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 

Care of the dying patient in the community

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

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:

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