THE BEING AND DOING OF END OF LIFE CARE

Background:

People are living longer, but with increasingly complex health problems; this, together with the need to take account of patient’s preferences, highlights the importance of end-of life care. According to the Worldwide Palliative Care Alliance, more than 100 m people annually would benefit from hospice and palliative care (including family and carers), but less than 8% of those in need access it. Internationally, training for palliative care is rarely included in healthcare education curricula. Institutions that specialise in giving palliative and end-of-life care are often not part of national healthcare systems. This paper draws upon the work undertaken on an ERASMUS Intensive Programme (IP) Project involving 6 EU countries. The UK partner was the University of Salford (led by Martin Johnson and Natalie Yates-Bolton). The programme aimed to help health and social care students to explore the implications of a human rights based approach to the care of older people and in particular, those who are at the end of their life. The students learnt about best practice across Europe contributing to a pan-European understanding being developed that could infl uence and shape the educational preparation of health and social care practitioners.

Objective:

Students and academics from the 6 partner countries have been working on the development of the Human Rights Older People and End of Life Care (HUROPEL) Project for 3 years. This IP was facilitated during May 2013, at the University of Auvergne, France. It involved subject specialist facilitated sessions from a range of multi professional and inter-disciplinary specialists, combined with visits to a range of clinical services in order to gain experiential knowledge of the diff erent cultural and professional approaches in use. Action Learning Sets were used to ensure that participants were able to utilise the outcomes of the IP to inform and shape the educational programmes in their home institutions (in our School, this resulted in the development of a MSc Dementia and the Enabling Environment programme).

Conclusion: Death and dying are stigmatised in some cultures to the point where they are taboo. In Western societies death has become medicalised and curative procedures are often prioritised ahead of palliative care. Whilst this paper is situated in a context that reflects the increasing population of people living with dementia and requiring end of life care as a result of their dementia, the focus of HUROPEL is particularly relevant to a much wider group of people who require eff ective end of life care.