The Hospice as a Learning Environment: A Follow-Up Study with a Palliative Care Team (original) (raw)
Related papers
2015
Background: This thesis stemmed from my experience as a hospice social worker. In this role I was aware that children were often excluded from conversation, education and support about death, dying and bereavement and was keen to explore how the Hospice team could address this issue. My practice experience paralleled UK policy making on end-of-life care, which argued for discourse on death, dying and bereavement to be promoted in the community to help prevent negative end-oflife and bereavement experiences (Scottish Government 2008; Department of Health 2008; Department of Health 2010). In Scotland, engaging with schools to equip children with skills and knowledge to cope with death and bereavement has been emphasised (Scottish Government 2010). These policy movements recognise the significance of public health approaches to end-of-life care, which focus on the multi-dimensional (physical, psychological and social) nature of problems and required solutions. Recently, such approaches have been gaining recognition concerning their contribution to end-of-life care. It has been suggested that hospices are well situated to promote such activities due to their expertise in end-of-life care (Salau et al. 2007). Aim and objectives: This thesis aimed to explore, implement and evaluate models of best practice in which hospices and schools can work in partnership to promote education and support around death, dying and bereavement from a health promotion perspective. It specifically sought to increase understanding about current practice in primary schools related to death, dying and bereavement and develop practice knowledge about the role of the Hospice in working with school communities to enhance such work. Methods: The research was facilitated in two primary schools in Scotland, using collaborative inquiry within an action research methodology. It was conducted over three phases. Phase one (preparation and scoping) involved a literature review, visits to other hospices and focus groups with hospice staff. Phase two (exploration) included a series of interviews and focus groups with children aged 9-12 years, parents and schools staff to develop collaborative inquiry and engage in a process of ii change. Phase three (planning and developing) comprised of deciding and advancing models of practice. Findings: Practice innovations were identified at each school that were of relevance to the school curriculum, the relationship between hospices and school communities, and the relationship between hospices and the wider society more generally. These innovations can be understood as health promoting palliative care activities, as defined by Kellehear (2005), due to the process in which they were designed and their focus on developing capacity to respond to death, dying and bereavement. Conclusion: The action research process identified the significance of sharing and transferring knowledge across and between hospice and school communities. It demonstrated that hospices have unique capacity to develop conversation, education and support around death, dying and bereavement in school communities. In order to fulfil this potential role, this will require a reorientation of service delivery that focuses on wider training, support, awareness raising and advocacy. The study has also demonstrated that action research is well situated to develop health promoting palliative care activities according to the shared goals of participation, ownership and empowerment. iii Acknowledgements I cannot begin this thesis without first saying a special thank you to all the people who were part of this research, who shared their experiences, looked towards the future and believed in change. I am indebted to those who continue to be involved in the practice innovations that are ongoing, in particular Helen Quinn, whose firm beliefs in the rights of children has ensured that practice continues despite a variety of organisational changes. I am grateful to Strathcarron Hospice who funded this research and would like to thank all the management team for being open to change and the staff who supported both me and the research. I would like to thank my supervisors, Professor Viv Cree and Professor Scott Murray, for their support, guidance and inspiration throughout my PhD journey and into my academic career. I am thankful too for the support of my PhD peers in both social work and medicine. In particular Libby Sallnow, whose shared enthusiasm for, and commitment to, health promoting palliative care was invaluable, and Barbara Kimbell, who shared the smooth and the rough of this journey and, very kindly, gave her time to proofread this thesis. I also want to thank my wonderful family and friends who took care of my daughter and made finishing the last leg of this PhD possible; in particular my in-laws, Ann and Mick McKay, and my mum, Christine Paul, all of whom have given her so much love and care. Lastly, but by no means the least, I am eternally grateful for the love and support of my husband, Michael McKay. During this PhD I experienced my most significant goodbyes and hellos; at the beginning my father, Anthony Paul, died and, near the end, my daughter, Ada McKay, was born, both of whom continue to influence and inspire me in numerous ways. Michael has supported me through all of this and to the finish line of the PhD marathon. He will always be the perfect distraction. v Dedicated to
The hospice as a learning space: a death education intervention with a group of adolescents
BMC Palliative Care, 2021
Background: The denial of death in Western society deprives young people of the tools to derive meaning from experiences of death and dying. Literature shows that death education may allow them to become familiar with this topic without causing negative effects. This article describes the effects of a death education course with adolescents, wherein participants were given the opportunity to meet palliative doctors and palliative psychologists at school and in a hospice, where they were able to converse with the families of the dying. Methods: This study used mixed methods and included an evaluation of a death education intervention with longitudinal follow-up of outcomes. The course involved 87 secondary school students (experimental group) aged between 16 and 20 years. We also recruited a control group of 76 similarly-aged students to observe differences. The variables we examined were: alexithymia, representation of death, value attributed to life and spirituality. These were measured with the following instruments: the Toronto Alexithymia Scale-20, the Testoni Death Representation Scale, the Personal Meaning Profile and the Spiritual Orientation Inventory, respectively. To better understand how the students perceived the experience, we asked the experimental group to answer some open-ended questions. Their answers were analysed through thematic analysis.
Integrating palliative care into the community: the role of hospices and schools
BMJ supportive & palliative care, 2016
Palliative care services have, up to now, paid insufficient attention to social aspects of dying and bereavement and this has affected how patients and their families experience end of life and bereavement within their communities. New public health approaches to palliative care offer a different way forward by seeking to develop communities that support death and bereavement. Such approaches are now a priority for the majority of hospices in the UK and work with schools has been identified as a key area of work. Practice that engages schools and children on issues concerning end-of-life care is, however, underdeveloped and underdocumented. This research explored the role of hospices in working with schools to promote education and support around end-of-life and bereavement experiences. Action research was used to explore the potential for hospices to work with schools and engage participants in change processes. The research was conducted in 1 hospice and 2 primary schools in Scotl...
Death education for Palliative care: a european project for University students
BMC Palliative Care
Background The need to spread the culture of palliative care and to train health care professionals from undergraduate courses is recognised internationally. The article presents the outcomes of a project devoted to palliative care training in university courses in four countries. Aims This article considered the outcomes of a course designed for university students who had the potential to work in a palliative care team. The main aim was to check the efficacy of the course and the motivation to work in palliative care settings, considering the impact of fear and representations of death. Methods The project presented the essential contents related to palliative care, using psychodramatic and photo-voice techniques. Longitudinal measurements were taken using a quantitative method design to detect changes among the students involved. The project involved 341 students at the first administration of the survey consisted of a protocol composed of standardized questionnaires in five coun...
A Matter of Life and Death: Situating Death in Education
Cjnse Rcjce, 2014
Death holds a significant place in our social and cultural worlds despite it not being a direct or first-hand experience for many of us. Informal education about death occurs regularly throughout our daily lives in the context of "teachable moments, the unplanned life events from which important lessons can be drawn" (Kastenbaum, 2007, p. 483). Building upon a meaningful clinical encounter with a woman who was dying, this literature review explores the need to situate death as a topic and as a curriculum within the broad context of education and across the lifespan. By exploring some of the relevant discourses on death relating to education, I identify ways in which we receive death education informally through media, religion, culture, and the arts, presenting an argument for more formalized death education within all systems and levels of education. Prelude I had seven years of experience in palliative care when Jane (a pseudonym) was admitted to the Hospice Unit where I worked. Jane was a 38-year old woman diagnosed with advanced metastatic cancer. But, much more important than her disease to Jane was the fact that she was a mother to several lively children ranging in age from 6 to 15. She freely admitted the best thing she had ever done in life was become a mother. Jane was not willing to agree with her terminal diagnosis nor hear from the doctors that she might only have months left to live. She needed and wanted to continue to live for her children and swore she would fight her cancer until the end. Jane's goal was to be at home with her children where she felt she belonged. I worked closely with her children, answering their questions about their mother's illness and counselling them through their anticipatory grief. Ultimately, Jane's death was not a peaceful one. She did fight it to the end. She did not die the type of death I would have liked for her, but it was her death. Her family said they understood she needed to do it that way. No matter how agitated and confused she may have seemed to the healthcare professionals working with her, when her children came to see her, she calmed down and appeared a little more at peace. It would have been easier for the palliative care team and perhaps for her family too, if Jane had accepted her dying. But this was not Jane. An Introduction to Death Education: Theories to Situate Context Jane was a very powerful death educator. Death education is defined as a developmental process in which deathrelated knowledge and implications resulting from that knowledge are transmitted (Dennis, 2009). As a death educator, Jane taught me that choice and autonomy in a seemingly choice-less situation is essential. She taught me that quality in dying occurs when people are allowed to die the way they wished, regardless of how challenged others are by it. Jane taught about the importance of death as a way to deepen our appreciation and love of life. She helped me understand that we die as we live and the importance of accepting people's individualized dying. Jane loved hard and fought hard for her children in all aspects of her living. This did not change because she was dying. I work to integrate the experience of my time with her into my living and into my actions as a death educator.
Learning about dying and living: An applied approach to end-of-life communication
Health Communication , 2016
The purpose of this article is to expand on prior research in end-of-life communication and death and dying communication apprehension, by developing a unique course that utilizes a hospice setting and an applied, service-learning approach. Therefore, this essay describes and discusses both students’ and my experiences over a 7-year period from 2008 through 2014. The courses taught during this time frame provided an opportunity to analyze students’ responses, experiences, and discoveries across semesters/ years and cocultures. This unique, 3-credit, 14-week, service-learning, end-of-life communication course was developed to provide an opportunity for students to learn the theories related to this field of study and to apply that knowledge through volunteer experiences via interactions with dying patients and their families. The 7 years of author’s notes, plus the 91 students’ electronically submitted three reflection essays each (273 total documents) across four courses/years, served as the data for this study. According to the students, verbally in class discussions and in numerous writing assignments, this course helped lower their death and dying communication apprehension and increased their willingness to interact with hospice patients and their families. Furthermore, the students’ final research papers clearly demonstrated how utilizing a service-learning approach allowed them to apply classroom learnings and interactions with dying patients and their families at the hospice, to their analyses of end-of-life communication theories and behaviors. The results of these classes suggest that other, difficult topic courses (e.g., domestic 10.1080/10410236.2015.1034337violence, addiction, etc.) might benefit from a similar pedagogical approach.
Death literacy is defined as a set of knowledge and skills that make it possible to gain access to understand and act upon end-of-life and death care options. People, and communities, with high levels of death literacy have context-specific knowledge about the death system and the ability to put that knowledge into practice. Positioned within a public health framework, death literacy is considered an outcome of people's experiences of and learnings about, death and dying. Death literacy also appears to be a resource that individuals and communities can use for their own benefit strengthening their capacity for future caring. This purpose of this paper is to explore the concept of death literacy using the evidence from a 6-year research project. We do this by examining how it corresponds to, and differs from, existing concepts and practices such as death education, health literacy, and community development. Our aim is to introduce new thinking into public health approaches to palliative care, offer practice development pathways in this arena and propose that death literacy offers a useful conceptual framework for both describing and understanding the outcomes of a public health approach to palliative care.
Background Working within the landscape of death and dying, professionals in palliative and hospice care provide insight into the nature of mortality that may be of benefit to individuals facing the end of life. Much less is known about how these professionals incorporate these experiences into their personal lives and clinical practices. Methods This ethnographic inquiry used semi-structured interviews and participant observation to elicit an in-depth understanding of the impact of death and dying on the personal lives of national key leaders (n = 6) and frontline clinicians (n = 24) involved in end-of-life care in Canada. Analysis of findings occurred in the field through constant comparative method and member checking, with more formal levels of analysis occurring after the data-collection phase. Results Eleven specific themes, organized under three overarching categories (past, present and future), were discovered. Early life experiences with death were a common and prominent feature, serving as a major motivator in participants’ career path of end-of-life care. Clinical exposure to death and dying taught participants to live in the present, cultivate a spiritual life, reflect on their own mortality and reflect deeply on the continuity of life. Interpretation Participants reported that their work provided a unique opportunity for them to discover meaning in life through the lessons of their patients, and an opportunity to incorporate these teachings in their own lives. Although Western society has been described as a “death-denying” culture, the participants felt that their frequent exposure to death and dying was largely positive, fostering meaning in the present and curiosity about the continuity of life.