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The future of palliative and end-of-life care

Lucy Sutton
RGN
National Policy Lead
The National Council for Palliative Care

The "end-of-life" phase of patient care ends in death. Definition of its beginning varies according to the individual patient and professional perspectives. In some cases it may be the patient who first recognises its beginning. In other cases the principal factor may be the judgment of the health- and social care professional team. In all cases, subject to patient consent, the beginning is marked by a comprehensive assessment of supportive and palliative care needs.
End-of-life care encompasses palliative care, but as a term commonly used throughout policy it is important to understand what is meant by it, and when hearing the term to realise that palliative care, even if unspoken, is included.
Palliative care is defined by NICE as:(1)
"… the active holistic care of patients with advanced, progressive illness. Management of pain and other symptoms and provision of psychological, social and spiritual support is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families. Many aspects of palliative care are also applicable earlier in the course of the illness in conjunction with other treatments."
In 2003 Sir Nigel Crisp, then chief executive of the NHS, stated that better care for the dying should become a touchstone for success in modernising the NHS.(2) Therefore all major policy since that time has included chapters or paragraphs on palliative and end-of-life care. The purpose was to raise the profile and importance of palliative and end-of-life care for all people, in whichever setting, with any life-limiting condition.
All health- and social care professionals will at some point in their career care for a person who is dying, so it is important that all are skilled in general palliative and end-of-life care - a major aim of the National Council for Palliative Care (NCPC), the Department of Health and End of Life Care Programme (EoLCP).
Of particular note and importance in policy terms are the chapters in the recent National Service Frameworks for Long Term Conditions, Renal Disease, Coronary Heart Disease and the NICE Guidance on Parkinson's Disease and Dementia (see Resources). There is also an important chapter in the recent white paper Our Health, Our Care, Our Say on palliative and end-of-life care that has led to the development of the forthcoming End of Life Care Strategy to inform the implementation of this.

Why now?
The aging population of the UK is increasing, and many of these patients are 85+, referred to as the "older old", and are more likely to have a range of comorbidities and long-term conditions. This is a population group that accounts for both a higher death rate and a large part of health expenses.  
One reason for the changing context of palliative care is access to current models. Palliative care in this country is largely built around specialist palliative care (SPC), which historically grew up to meet the needs of people with cancer. SPC services are still largely accessed by people with cancer, but this may not be the right model for people with other conditions, such as heart failure.
The NCPC has found that the majority of people requiring end-of-life care wish to be cared for by their usual carers in their usual setting, and for their usual carers to have the skills to care for them right up to death and to support their family beyond death. The SPC services that have been developed for cancer have also historically developed as charities, and therefore are in areas where communities have developed them rather than in the areas of greatest need - again a point that highlights that the usual carers in the usual setting are best placed to identify and meet the needs of their population.
It is important to consider the increasing prevalence and incidence of dementia as a significant comorbidity. Work carried out by the NCPC shows that approximately 29% of those dying from cancer, circulatory disease or respiratory disease will have dementia. In total this will amount to some 870,000 people with dementia in the UK by 2010, rising to 1.8 million by 2050. Dementia also currently affects 50-60% of care home residents, a percentage that will increase as the aging population increases.(3) End-of-life care models and policy will need to take this problem into account.

NCPC's four policy groups
Policy directives, an increasingly aging and diverse population, increasing comorbidity, and the needs of people with a wide range of diseases mean that what is needed are practical policy solutions and new ways and models of working. The NCPC is leading this work through four policy groups, which consider the palliative care needs of people with:

  • Cancer.
  • Circulatory and respiratory conditions.
  • Neurological conditions.
  • A cross-cutting group looking at the needs of older people.

The impact of these groups will have both a national effect, for example being involved in the development of the End of Life Care Strategy and NICE Guidance on Dementia, and a local effect, for example by highlighting and evaluating transferrable models of good practice.
The key learning from these groups is the need for shared care, with SPC acting as an advisory and support service, but the usual carers being equipped with the skills to care for people until death. The importance is therefore placed on effective links between services so that plans of care can be put in place and professionals supported. Some innovative models of good practice have been identified and are available from the NCPC for each group (further information available from the NCPC website - see Resources). There are also examples of good practice for care homes and in November 2006, Changing Gear: Managing the Last Days of Life was updated and launched, which provides very clear guidance on caring for people including drug conversions.

End of Life Care Programme tools
The EoLCP tools are locally adaptable tools to help deliver palliative and end-of-life care.

Gold Standards Framework(4)
Many in primary care are aware of this tool which aims to improve coordination and communication in the palliative phase of any illness. Even if not using the tool, the key question that should be addressed is: "Would I be surprised if my patient died
within a year?"
The prognostic indicators paper which supports the Gold Standards Framework can also help answer this question by setting out key criteria to identify the palliative phase in a range of illnesses, including dementia and frailty. The importance of this is that services can then be triggered, such as:

  • Considering the need for benefits, for example, DS1500 special rules.
  • Liaison, if it has not happened previously, with palliative care services as appropriate for support and advice.
  • The keeping of a register of people in the palliative phase to enable advanced care planning and prescribing so people can remain where they wish to be.
  • Regular multiprofessional team meetings to review the needs of each palliative care patient.
  • To assist in this six Quality Outcome Framework points have been allocated in the 2006/7 year.

The Liverpool Care Pathway(4)
The Liverpool Care Pathway provides a framework for the assessment of symptoms, advanced prescribing of drugs to avoid out-of-hours issues, and communication with the patient and family as an aid to care for people in the last days of life.

Preferred Place of Care Tool(4)
The Preferred Place of Care Tool is helpful for documenting where people want to die and then monitoring where they actually do, which is important to ascertain the effectiveness of care.  

Conclusion
People who have palliative and end-of-life care needs generally want to be able to live and die in their usual setting, being cared for by their usual carer, who is able to deliver the care they require. The NCPC has developed several models of good practice for the end-of-life care needs of people with different conditions. In addition, nurses should find out what training and resources are available in their area.
It is essential that all primary healthcare professionals and their teams feel confident and competent in helping patients at the end of their life and their carers.

References

  1. National Institute for Health and Clinical Excellence. Improving supportive and palliative care for adults with cancer. London: NICE; 2004. Available from www.nice.org.uk
  2. Crisp, N. March 2003. Speaking as Chief Executive of the NHS. Available from: www.dh.gov.uk.
  3. National Council for Palliative Care. Exploring palliative care for people with dementia. London: NCPC; 2006.
  4. NHS. End of life care programme. Available from: www.endoflifecare.nhs.uk/eolc/

Resources
The National Council for Palliative Care (NCPC)
T: 020 7697 1520
F: 020 7697 1530
E: enquiries@ncpc.org.uk
W: www.ncpc.org.uk
The umbrella organisation for all those who are involved in providing, commissioning and using palliative care and hospice services in England, Wales and Northern Ireland
End of Life Care Programme
T: 0116 222 5103
F: 0116 222 5101
E: eolc@modern.nhs.uk
W: www.endoflifecare.nhs.uk

National Service Frameworks
W: www.dh.gov.uk/PolicyAndGuidance/Health AndSocialCareTopics/ HealthAndSocialCare
Article/fs/en?CONTENT_ID=4070951&chk=W3ar/W

National Institute for Health and Clinical Excellence
W: www.nice.org.uk