South East London Palliative and End of Life Care Education and Training Strategy: Meeting the Education and Training Needs of the Health & Social Care Workforce Involved in the Care of Patients and Carers at the End of Life.

EXECUTIVE SUMMARY Aims 1. The aims of this strategy are • to ensure that a full range of education and training related to the adult end of life care pathway is available across South East London to meet the needs of our health and social care workforce • to enable those responsible for end of life care education and training commissioning to procure comprehensively from a full range of education providers in a systematic and strategic manner. Background 2. The work that underpins this strategy was begun by the South East London Cancer Network via its Palliative and End of Life Care Coordinating Group and then developed by way of the Marie Curie Delivering Choice Programme’s Education and Training work stream.

"I’ll call you when we are ready" (One family’s experience of critical care and end of life decision making)

The purpose of this paper is to explore through narrative accounts one family's expérience of critical care, after the admission of a family member to an Intensive Care Unit (ICU) and their subséquent death five weeks later. Numerous studies support the need for effective communication and clear information to be given to the family. In this instance it was évident from their stories that there were numerous barriers to communication, including language and a lack of insight into the needs of the family. Many families do not understand the complexities of nursing care in an ICU so lack of communication by nursing staff was identified as uncaring behavior and encounters. Facilitating a family's proximity to a dying patient and encouraging them to participate in care helps to maintain some sensé of personal control. Despite a commitment to involving family members in care, which was enshrined in the Unit Philosophy, relatives were banished to the waiting room for hours. They experienced feelings of powerlessness and helplessness as they waited with other relatives for news following investigations or until 'the doctor had completed his rounds'. Explanations of "we must make 'the patient' comfortable" was no consolation for those who wished to be involved in care. The words "I'il call you when we are ready" became a mantra to the forgotten families who waited patiently for those with power to admit them to the ICU. Implications are this family felt they were left alone to cope with the traumatic expériences leading up to and surrounding the death. They felt mainly supported by the priest, who not only administered the last rites but provided spiritual support to the family and dealt sensitively with many issues. Paternalism in décision making when there is a moral obligation to ensure that discussions on end of life dilemmas are an inclusive process with families, doctors, nurses was not understood, therefore it caused conflict within the family over EOL décision making. The family felt that the opportunity to share expériences through telling and retelling their stories would enable them to reconfigure the past and create purpose in the future.

A case study of pre-midlife crisis: an extraordinary transformational episode in an ordinary life

This case study explored a single in-depth narrative of an episode of crisis. The participant, an English Jewish man in his late thirties (Guy), was selected using a ‘random purposeful’ design from a sample who had previously participated in a study on the experience of crisis in pre-midlife adulthood. From a subgroup of participants chosen for giving full accounts of both inner and outer dimensions of crisis, the individual was selected randomly. Data collection comprised two interviews followed by an email discussion. The crisis occurred in Guy’s late thirties, just before the midlife transition, and so can be considered a ‘pre-midlife’ crisis. It subsumed the period surrounding leaving a high-profile banking career and a dysfunctional marriage, and the ensuing attempts to rebuild life after this difficult and emotional period. Qualitative analysis found four trajectories of personal transformation over the course of the episode: Firstly there was a shift away from the use of a conventional persona to a more spontaneous and ‘authentic’ expression of self; secondly there was a move away from materialistic values toward relational values; thirdly a developing capacity to reflect on himself and his actions; fourthly an emerging feminine component of his personality. The case study portrays an extraordinary event in the life of an ordinary man approaching middle age. It illustrates the transformative nature of crisis in ordinary lives, the dramatic nature of narrative surrounding crisis, and also illustrates existing theory about the nature of adult crises.