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Defining quality in end of life care

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This month sees the launch of two major new documents on end-of-life care that could affect the majority of nurses at some point in their career. Clare Lomas reports on the Department of Health’s new core competences and principles for working with adults at the end of life and the Gold Standards Framework Centre’s updated guidelines on end-of-life care.

The Department of Health has just published the first ever national set of core competences and principles to help health and social care staff improve end-of-life care for people in England.

The document, which aims to improve the skills and knowledge of all staff who work with people approaching the end of life, is one of the key elements to come out of the National End of Life Care Strategy, published by the govenrment in July last year.

The strategy called for a ‘cultural shift in attitudes and behaviour related to end-of life-care’ in the workplace. It emphasised that the quality of such care is dependent on the skills, knowledge and attitudes of all staff – not just those working in palliative care.

Developing this aim, the new document sets out four competences and seven principles designed to support the estimated 2.5 million healthcare staff who have contact with people nearing the end of their lives (see box below).

In essence it is intended to set the baseline for a quality end-of-life care workforce.

The four competence groups:

  • Communication skills;
  • Assessment and Care Planning;
  • Symptom Management;
  • Advance Care Planning.


The seven principles are:

  • The choices and priorities of the individual are at the centre of all end-of-life care planning and delivery;
  • Effective, straightforward, sensitive and open communication between individuals, families, friends and workers underpins all planning and activity;
  • High quality end-of-life care is delivered through close multidisciplinary and inter-agency working;
  • Individuals, their families and friends are well informed about the range of options and resources available to them to enable them to be involved in the planning, developing and evaluating of end-of-life care plans and services;
  • Care is delivered in a sensitive, person-centred way that takes account of the circumstances, wishes and priorities of the individual, their family and friends;
  • Care and support are available to, and continue for, anyone affected by the end of life, and death, of the individual;
  • Workers are supported to develop knowledge, skills and attitudes that enable them to initiate and deliver high quality end-of-life care or, where appropriate, to seek advice and guidance from other colleagues. Workers recognise the importance of their continuing professional development, and take responsibility for it.

‘These competencies and principles should provide a grounding and common foundation for staff and employers to build on,’ said Claire Henry, director of the national end-of-life care programme.

‘They are designed to effect the direction of travel in which things need to go, and will equip staff to work confidently and professionally with people at the end of their lives, and their families and friends,’ she told Nursing Times.

‘Good communication skills are extremely important, and if we can get communication right at the end of life, it will make us better communicators all round,’ she added.

Ms Henry acknowledged that for nurses who do not normally work in palliative care settings, nursing someone approaching the end of life can be difficult.

‘Nurses are very much “doing people”, they want to offer help and support. But if they don’t know what to do, end-of-life care can become very challenging,’ she said. ‘We [have] found that a lot of people are not confident or competent in dealing with people at the end of their lives.’

The core competences have been developed to help improve the skills of all health and social care professionals at all levels and in all care settings, and one of the most important things the document emphasises is multidisciplinary teamworking.

‘Effective teamwork and knowing your limits is very important,’ said Ms Henry. ‘People can sometimes be afraid of advanced care planning because they don’t feel equipped to deal with it.

‘A patient may ask a healthcare assistant for help with funeral arrangements, for example, and it is important that the HCA knows where to go and who to ask for advice if they need it. It is about bringing health and social care together,’ she added.

As well as providing a framework for frontline health and social care professionals, the competences are also designed to help those involved in the planning or delivery of education and workforce needs.

‘People need different levels of training so we need to identify what is out there and assess if it is fit for purpose,’ said Ms Henry. ‘A lot of training is done in the traditional way, but we are looking at more creative learning styles, such as e-learning based around the four core competences. We need to access different ways of learning so that we can provide people with the skills they need,’ she added.

The DH is currently working with a variety of health and social care organisations across England to develop ways of using the competences as a starting point for training and education in end-of-life care.  

For example, Stoke-on-Trent PCT developed a training needs analysis with the tools, which was then distributed to community nurses and their managers to enable a workforce profile to be created.

They have also enhanced staff development across care homes in East Sussex, and Dorothy House Hospice Care – a charity that provides both community and hospice care to people across Wiltshire – developed a job description for a new generic hospice worker role.

Additionally, some organisations have utilised the tools to assess and revise the educational opportunities currently available in end-of-life care.

NHS Bradford and Airedale Clinical Network used the competences as a benchmark to revamp their one- and two-day courses in end-of-life care. From September this year, the revised courses for staff from care homes and care agencies will more closely reflect new initiatives in such care, covering advanced care planning and end-of-life care pathways.

A similar approach has been taken by the East Midlands Cancer Network. In collaboration with the Southern Derbyshire Workforce Development Team and three local hospices, developed an innovative introductory training course for healthcare staff with the tools.

From December 2009, the scenario-based course will be delivered over three days to qualified nurses, who will also complete a workbook and e-learning modules based on the core competences.

‘Delivering effective end-of-life care is one of the most important things nurses can do,’ said Phil Mayor, education facilitator with the East Midlands Cancer Network. ‘But it requires training because people often find they don’t know what to say to patients.

‘Sometimes you need to be proactive, with advanced care planning for example, but sometimes the patient may just want you to listen,’ he said.

‘Training needs to be targeted and the competences help set down the standard that people should be adhering to. We see the evaluation of the pilot work as a critical stage as this will help in the development of a “gold standard” in learning and education for healthcare staff providing end of life care,’ he added.

Every strategic health authority has been given funding for workforce planning in end-of-life care, and if the courses are successful the East Midlands network hopes to secure some of the funding to roll the course out to all care home staff across the region (question here about pilots).

The DH also plans to launch a set of e-learning courses next January and 12 sites across England are currently piloting education programmes looking specifically at communication skills, which are due to run until September 2010.

Ms Henry reiterated the importance of the new guidance. ‘Nurses can be heavily involved in end-of-life care and we need to equip them with the knowledge and skills to do it effectively,’ she said.

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Readers' comments (1)

  • This is all very important and good news. However what we really need to know is that at the end of life a patient who wishes to die at home will have 24 hour hands on nursing care. At the moment this is available only in some areas with some hospices offering hospice at home and some trusts who have their own team of nurses and of course the Marie Curie nurses, but it is few and far between. As a CNS for cancer I sadly see far too many patients dying in hospital as there are not enough nurses employed in the community to give the hands on quality care that is required.

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