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End of life care

End of life care
21 October 2015

There is a growing concern that people who want to spend their final days at home are unable to have their wish fulfilled. Palliative care is now an increasingly discussed topic and it has been a focus for Leicestershire

There is a growing concern that people who want to spend their final days at home are unable to have their wish fulfilled. Palliative care is now an increasingly discussed topic and it has been a focus for Leicestershire

About 8,500 people die every year in Leicester, Leicestershire and Rutland (LLR). The majority (54.8%) die in hospitals. Most deaths are from advancing long-term conditions and multi-morbidity and can be anticipated.
Achieving transformation in end of life care is a major ambition of health and social care, and at West Leicestershire Clinical Commissioning Group (WLCCG) is now in to our fourth year of a radical programme of redesign in personalised care planning and provision, that has resulted in more people dying at home through personalised care planning.
It is important be open and honest and start talking about it. Quality of life, right to the end, is important. Having your wishes met, having the chance to say goodbye to the people you love is important. There is often no real medical need for someone to die in hospital. Advances in medicine and pain control mean it’s quite easy to care for them at home.
Our priorities for end of life care:

  • Increase prevalence towards a target of 0.7%.
  • Increase the number of care plans in place for patients at end of life.
  • Training and up-skilling to support primary care providers in delivering high quality end of life care.
  • Work towards a unified LLR approach to end of life care across all providers.

What we did
From the outset of implementation of the end of life care programme, the CCG:

  • Secured funding for practices to focus upon improved delivery of end of life care, with targeted support for GPs and the wider primary care team in each practice. This included tailored training for practices and the implementation of an end of life co-ordinator in each practice.
  • Appointed two Macmillan end of life care GP mentors to provide clinical support and encouragement to all practices, strengthening partnership working with Macmillan, and forging stronger links with other partnership organisations to enable a collaborative approach to reviewing the care pathway for end of life care patients.
  • Commissioned the Leicestershire Organisation for the Relief of Suffering (LOROS) to provide bespoke training to GP practices where training and development needs are identified; training was offered on a tailored basis to individual practices, and also delivered through protected learning time events with positive feedback from GPs and the wider primary care teams
  • Developed the Deciding Right: Planning your care in advance clinical template and embedded this within the practice clinical systems. The template is designed to support GPs to capture and record care planning discussions and decisions with patients and carers.
  • Developed an electronic special patient note in order that care plan details can be shared swiftly and securely with the out of hours service, NHS 111, East Midlands Ambulance Service; this is embedded within the Deciding Right: Planning your care in advance plan template.
  • Successfully piloted a GP on-call scheme across a first wave cohort of practices in the CCG, providing GP access during out-of-hours periods to those patients who have been identified as in the last few weeks of life; this scheme has now been embedded as part of the end of life care workstream.
  • Led the development, implementation and leadership of a Leicester, Leicestershire and Rutland end of life care working group to support the alignment and unification of care planning, collaborative working and sharing of good practice.
  • Undertook a clinical review of after death audits submitted by practices to identify any common trends or themes, including; communication issues, practical issues and anticipatory problems, end of life knowledge/training needs, unexpected clinical scenarios, and issues around availability of services.

Local innovation: GP on-call scheme for end of life care patients
Through the end of life care work programme, WLCCG identified that emergency admissions for patients in their last two weeks of life were higher than average, too many patients were dying in hospital, and even patients on the end of life care registers with an advance care plan and do not attempt CPR (DNACPR) in place were being admitted. Many of these admissions occurred outside of GP opening hours.
The GP on-call scheme augments the current work undertaken by practices and offers an innovative solution to the issues outlined above, by implementing an unscheduled care pathway that has a built in clinically led practice ‘triage’ approach to the current admission default.
The scheme funds practices to deliver an on-call service by a GP during a specified out-of-hours period (6.30pm – 12.00am and again from 6.30am – 8.00am, Monday to Friday, and at weekends 8.00am – 8.00pm), to patients suspected as being in their last two weeks of life. These patients and their carers are given the telephone number of a GP from their registered practice who will provide them with advice and support, and a subsequent visit if needed.
There is an option for practices to participate in this scheme collaboratively, or independently as a practice. The scheme commenced in January 2014, with a take up rate of 10 practices. Out of 50 practices actively participating, three of these are working collaboratively to support patients.

Results and impact for patients from the GP on-call scheme

  • Only three patients out of 59 admitted (5%) since the commencement of the scheme in January 2014.
  • Average of one visit and one phone call per patient as a result of embedding good care planning during weekday working hours.
  • Continuity of care for patients.
  • Scheme improves follow up supporting families and carers after death.
  • GP job satisfaction.
  • Overall, care most effective where good coordination and team working is in place with community nurses.

Overall outcomes
The results show a practice participation rate of 98% and an increase in registers from 0.108% in 2010/11, to 0.223% in 2011/12, to 0.327% in 2012/13 to 0.390% in 2013/14, to 0.49% in 2014/15 (year to date). Deaths at home have increased to 27.9% in 2013/14 from 25% in 2012/13.
Deaths in usual place of residence increased from 45.8% in 2012/13 to 49.5% in 2013/14.
The number of advance care plans in place has increased in year from 858 to 998. The Impact on admission rates is being analysed.
In meeting our local end of life care priorities, some additional key benefits have included:

  • GPs developing advanced communication skills, including having the difficult conversation (Dying Matters ‘How Long Have I got Doc’ Advanced Communications Programme).
  • Strengthening our already robust partnerships with other stakeholders, including Macmillan Cancer Support, LOROS, Age UK and Coping with Cancer in addition to statutory organisations.
  • Improved support for carers.
  • Improved bereavement support.
  • Improved networking in between GPs and sharing of good practice.

Ruth Bruce, GP contract lead, West Leicestershire Clinical Commissioning Group and Professor Mayur Lakahni, CCG chair.

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