Comment: The EAPC: new developments for the new millennium
Stein Kaasa
pp 4-4
The European Association for Palliative Care (EAPC) was established to promote palliative care in Europe and to act as a focus for all of those who work, or have an interest, in the field of palliative care. The EAPC has grown rapidly since its foundation in 1988 and today consists of 240 individual members and 25 collective member associations representing over 23,000 people.
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Oral transmucosal fentanyl citrate for the management of breakthrough pain
Geoffrey Hanks
pp 6-9
It has long been recognised that one of the types of pain that is most difficult to relieve effectively in cancer patients is pain associated with weight-bearing or movement caused by bone metastases. In the UK, in cancer pain literature, this type of pain has been referred to as ‘incident pain’, defined as ‘transient pain precipitated by a voluntary action … often (occurring) against a background of adequately controlled baseline pain’. The difficulty with such transient pain is that if the dose of regular opioid is titrated sufficiently to control the intermittent pain, it is too much for the patient at rest, when excessive drowsiness or other adverse effects may result. This reflects the fact that pain counteracts the central nervous system (CNS) depressant effects of opioids, and a balance is usually achieved which allows effective relief of pain without disabling side-effects.
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Motor neuron disease
Nigel Leigh, Victoria Williams and Sharon Abrahams
pp 10-12
Motor neuron disease (MND) is a progressive neurodegenerative disease of unknown aetiology affecting around five people per 100,000. It is more common with increasing age and 5–10% of cases are familial. MND is characterised by progressive weakness and wasting of the limbs, difficulties with speech and swallowing and respiratory muscle weakness. Most patients die of respiratory complications within three to five years, although a small percentage survive more than ten years. Usually sphincter control and cognitive function are preserved, but both may be affected in a minority of patients. There is no cure for MND and therapy is directed at improving quality of life. Providing timely support and facilities for people affected by MND can be extremely challenging because of the rapid deterioration in function. The care of people with MND requires a co-ordinated professional multidisciplinary team approach and is often best managed within a palliative care setting.
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Heart failure and palliative care
Claude Deronzier and Jean Giletti
pp 14-16
Heart failure affected approximately 480,000 people in France in 1994. The incidence of this disease increases with the ageing of the population. The annual mortality rate varies from 15–35%, depending on the studies. A patient with stage IV disease has an 80% risk of dying within two years and over 40% within a year. The cause may be sudden death (30–40%) or a gradual deterioration in the haemodynamic and clinical situation (60–70%).
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Choosing to nurse the dying
Kay de Vries
pp 17-18
Various studies have been carried out to explore why nursing is chosen as a career. However, little research has been carried out to discover why nurses choose to work in specific areas of care. The small number of studies that include any discussion on why nurses choose to work in the specialty of palliative care indicate that the desire for more professional autonomy and to practise more ‘caring’ are some of the reasons. This article discusses some of the findings from a small case study research project that was carried out to investigate the influence of role models on palliative care nurses in their choice of career.
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Palliative care in Europe: towards a more comprehensive understanding
Rien Janssens, Henk ten Have, David Clark, Bert Broeckaert, Diego Gracia, Franz Josef Illhardt, Göran Lantz, Salvatore Privitera and Paul Schotsmans
pp 20-23
In March 1998, a European project on palliative care ethics, the Pallium project, was launched. With financial support from the European Commission, it unites 29 representatives from seven European countries (Belgium, Germany, Italy, the Netherlands, Spain, Sweden and the UK) with backgrounds in ethics, philosophy, theology, history, palliative medicine, nursing, sociology and psychology. The project aims to articulate, clarify and evaluate differences in organisational, conceptual and ethical aspects of palliative care. It also seeks to bring to the surface prevailing differences in the understanding of palliative care in the belief that this will enrich debate about future development.
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A metal strongbox – a metaphor for use in bereavement work
Barry Wright, Ian Partridge and Christine Williams
pp 24-26
Chronic mourning, where a bereaved person may suffer prolonged and intense grief,1 is a state in which individuals may be described as ‘stuck’. The word stuck has lost favour, but it does seem as though some people find it difficult to negotiate their way back to a normal routine free from the burden of all-encompassing thoughts about the death of a loved one. This is not to say that they should ‘put it all behind them’ or ‘let go’, because the bereaved person may negotiate and renegotiate their loss as time passes.2 However, there is usually a gradual return to ‘normality’ and they begin finding pleasure (albeit initially to a small degree) in life again. Unfortunately, some people never reach this point. It seems as though their ability to return to any possibility of a pleasurable existence is ‘locked within a metal strongbox’.
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Assessing training needs to extend the scope of palliative care
Mari Lloyd-Williams
pp 28-29
Extending boundaries of palliative care for all patients is becoming a reality. Many see this as natural progression for a specialty that has proven its effectiveness and benefit for patients with advanced cancer. Palliative care is now firmly accepted within the medical hierarchy in hospitals and the community. National Service Frameworks (NSFs) are now including and acknowledging the necessity of palliative care for those with chronic or life-threatening disease. For some, this extension is a welcome addition and is seen as a way forward towards further integration, while others fear becoming overwhelmed by yet more referrals with not enough resources to meet the increased demand.
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The development of children’s hospices in the UK
John Overton
pp 30-33
Although palliative care has its origins as long ago as 460 BC, paediatric palliative care is a relatively new concept worldwide, embracing a philosophy that attends to the psychological, physical, spiritual and social needs of the child and their family. Farell describes this care as a concept where there is a shift of emphasis from conventional care that focuses on quantity of life, towards a commitment to care which enhances the quality of life. The joint report of The Association for Children with Life-threatening or Terminal Conditions and their Families (ACT) and The Royal College of Paediatrics and Child Health (RCPCH) recommends that palliative care should be an integral part of clinical practice available to all.
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The evolution of palliative care for children in Greece
Danai Papadatou
pp 35-38
Palliative care originated in Greece some two-and-half-thousand years ago, but to understand the current situation of paediatric hospice care in the country, one needs to acknowledge the social context within which care is provided to dying individuals. In the past, care of the dying was traditionally assumed by the family and the community. After the Second World War, and dramatic advances in medicine, the majority of seriously ill patients began to rely actively upon the medical healthcare system for their care. This system was, and still is, governed by a biomedical approach emphasising diagnosis, treatment and cure. Death is shunned.
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