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End-of-life care: a good death

Polly Moffat
Supervising Editor
Nursing in Practice

Primary care nurses, particularly those working in the community, are well placed to hold conversations with patients and families about death and dying

The UK population is ageing, and more people are living longer with long-term conditions. As a result, the concept of end-of-life care has gained greater recognition in recent years, and this is exemplified by the UK government's End of Life Care Strategy, published in 2008.1

The strategy set out clear guidance for the development of care pathways for people near the end of life, and was developed by an expert advisory board chaired by Professor Mike Richards, National Cancer Director, and included key stakeholders from statutory health, social care, third sector organisations, and professional and academic organisations. Work since has supported this, with the National End of Life Care Programme (NEoLCP) set up to deliver key objectives in workforce development, sharing good practice and user involvement.

The World Health Organization (WHO) defines palliative, or end-of-life care, as follows: ‘Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.'2

The issue of dying at home provokes impassioned debate whenever it is raised. In the UK, it has been suggested that 56-70% of people would prefer to die at home, yet of the 500,000 people who die each year in England, 58% die in hospital.3 A 2008 report from Marie Curie Cancer Care entitled Delivering Choice demonstrated that a pilot project, the first of its kind in the UK, helped to double the number of terminally ill people able to die at home.4 However, the reality is that the majority of people die in hospital, despite the fact that around 40% have no medical need to be there. The Delivering Choice project showed that for patients benefiting from pilot services in Lincolnshire:

  •     Deaths at home were up from 17% to 42%.
  •     Deaths in hospital were down from 63% to 45%.
  •     Total costs for end of life care were down 8%.

Further research by the charity also showed that patients who were already in hospital expressed a preference to return home to die, even if they required complex care. Since the programme began there have been:

  •     An increased number of deaths outside of hospital.
  •     Reduced admissions to hospital.
  •     Reduced zero day stays in hospital (zero day admission=in and out of hospital in the same day).
  •     Reduced hospital long-stay admissions (long stay=over 30 days).

The research proved that many patients wish to die at home and they must be given every possible opportunity to do so, in order to ensure that their dignity is maintained.

In 2011 the King's Fund published a report entitled Implementing the End of Life Care Strategy: lessons for good practice, which provided guidance on the delivery and organisation of end of life care at a local level, aimed at those responsible for commissioning and organising end-of-life care services.5

It has been recognised that the hospice movement has provided welcome standards of care for patients with a terminal illness - most often cancer - and great strides have been made in palliative care for these patients. This includes adequate pain relief and appropriate physical and psychological care for those in their last days.

The hospice movement was championed by Dame Cicely Saunders, a former nurse (and later doctor) and the founder of the modern hospice movement, who campaigned relentlessly for the rights of everyone nearing the end of life. She felt that every individual deserves to be treated equally and that the most important part of the experience of death is comfort and understanding. She said: “You matter because you are you. You matter to the last moment of your life, and we will do all we can, not only to help you die peacefully, but also to live until you die.”

Health professionals including GPs and nurses in primary care now have a charter, developed by the Royal College of General Practitioners (RCGP), to assist with better care of patients at the end of their lives.6 A copy of the charter will be sent to 8,500 GP practices across England, to be displayed where patients can see them. The charter features seven key pledges to help patients live as well, and as long as they can, including:

  • That the primary care team will do all they can to help the patient preserve their independence, dignity and sense of personal control throughout the course of their illness
  • That the primary care team will support those close to the patient, both as the patient approaches the end of their life and through their bereavement.

At the launch of the charter, Professor Keri Thomas, RCGP Clinical Champion for End of Life Care, said: “GPs and their teams have a special relationship not just with their patients but with the people close to them, all of whom need special care and support through the process of dying. We have the ability to co-ordinate good care and to help reduce some of the worry and stress when a loved one is approaching the end of their life.”

In 2009, the National Council for Palliative Care (NCPC) set up the Dying Matters Coalition in England to promote public awareness of dying, death and bereavement, chaired by Professor Mayur Lakhani, a practising GP. The aim of the coalition's is ‘to support changing knowledge, attitudes and behaviours towards death, dying and bereavement, and through this to make ‘living and dying well' the norm'. This will involve a fundamental change in society in which dying, death and bereavement will be seen and accepted as the natural part of everybody's life cycle. Similar groups are active in Wales, Scotland and Northern Ireland.

With all these key documents and support providing advice to health professionals about how to care for people at the end of life, it is still important that nurses feel able to initiate discussions about death and dying with their patients.

Community nurses are well placed to hold conversations with patients about their preferences, taking into account their wishes and those of their family. Often, it is necessary to consider the patient's cultural background, as this can have an important influence on any decisions that are made. Some cultures value the shared decision-making of the family and it should be appreciated by health professionals that, in these cases, the patient is not making the decision alone.

The recent report from the Health Ombudsman, Ann Abraham, on the care of older people and the subsequent discussions in the media about the failings of the NHS to ensure dignity and respect has links to end-of-life care.7 The shocking stories of patients being left hungry and unable to clean themselves by nurses who were either too busy or lacked enough training to be able to cope, have highlighted the need for strategies in place to ensure good end-of-life care among this group of vulnerable patients.

The report also made it clear that more efforts should be focused on care at the end of life for groups other than cancer sufferers, to include older people and those with progressive conditions such as dementia. It has been reported that approximately 17% of deaths in England occur in care homes, but with considerable variation across regions.

In July 2010 the Department of Health commissioned an independent review of the funding of palliative care in England. The review team, chaired by Thomas Hughes-Hallett, Chief Executive of Marie Curie Cancer Care, and was asked to develop a per-patient funding mechanism for palliative care. The final report, published in July 2011, concluded that there are still challenges to be faced in providing the best and most cost-effective palliative care. Its recommendations included the following three key aims:
•    To create a fair and transparent funding system.
•    To deliver better outcomes for patients.
•    To provide better value for the NHS.

The aims should be achieved by developing:
•    An NHS palliative care tariff which is based on need.
•    A funding system which incentivises good outcomes for patients, irrespective of both time and setting.
•    The commissioning of integrated care packages which stimulate community services.8

It is hoped that a fairer, more transparent system will be introduced, that provides better outcomes for patients and more cost-effective care for the NHS. Susan Munroe, Marie Curie Cancer Care's Director of Nursing and Patient Services commented: “Far too many people at the end of their lives are still not getting the care and support they need nor do they know what they are entitled to. “We welcome the recommendations of the review as the next big step. This review clearly sets out what the NHS should fund so that people have a clear understanding about what they can expect from the NHS and from charities like Marie Curie. We now want to see these recommendations implemented by the government as a matter of urgency.

“Marie Curie is working in people's homes and communities, alongside families and carers, to ensure that people at the end of their life are supported to be cared for and die in the place of their choice.”

Care for those at the end of life must be optimal in terms of discussions about death and dying; however, it is clear that the reality is that a lack of staff and appropriately qualified professionals. Opportunities must be given to nurses, healthcare assistants and care home staff to become confident in dealing with patients who are dying and to ensure that this vital part of care is not neglected. Cicely Saunders advocated the idea that the family is affected by the manner of a relative dying as much as the individual themselves, so it is important to take their views and feelings into account.

References
1.    Department of Health (DH). End of Life Care Strategy. London: DH; 2008.
2.    World Health Organization. End-of-life care. Geneva: WHO; 2003.
3.     Dying Matters Coalition. Why Talk About It? Available from: www.dyingmatters.org/overview/why-talk-about-it
4.    Marie Curie Cancer Care. The Delivering Choice Programme in Lincolnshire. London: Marie Curie Cancer Care; 2008.
5.    King's Fund. Implementing the End of Life Care Strategy: lessons for good practice. London: King's Fund; 2010.
6.    Royal College of General Practitioners. Charter for end of life care. London: RCGP; 2011.
7.    Parliamentary and Health Service Ombudsman. Care and Compassion? London: The Stationery Office; 2011.
8.    Hughes-Hallett T, Craft A, Davies C, Mackay I, Nielsson T. Final Report of the Palliative Care Funding Review. London: Department of
Health; 2011.