This collection of work represents an interest in education in palliative care over the last ten years. These papers are written either by myself or in collaboration with colleagues in Britain and New Zealand. During those years the way in which palliative care is taught and learned has changed and continues to change. The overview of the work submitted here describes the rationale behind the development of new approaches to the teaching and learning of care at the end of life. In many ways this collection represents a personal journey - one that involves investigation, growth, research and evaluation. By publishing these papers and promoting discussion in this area of education I have made an original contribution to the changing way in which doctors are taught and learn to care for people who are dying and into our understanding of the nature of learning to care for those people. The papers are listed here in chronological order. Throughout the text of the overview they are referenced along with other relevant papers but appear in the reference list in bold. I declare that I am the author of the papers contained in thesis unless otherwise stated. All references documented have been consulted in the writing of these papers. References appear in the texts in the form required for each individual journal. The papers have all been published in peer reviewed journals. MacLeod, R.D., Nash, A.: 1991 : Teaching palliative care in General Practice - a survey of education needs and preferences. Journal of Palliative Care 7: 4, 9-12. (reference 6) (RDM 70% - AN 30%) MacLeod, R.D., Nash, A.: 1992 : "Taking the lid off1 -observations of the process of palliative care education for General Practitioners. Postgraduate Education for General Practice 3, 28-3 (reference 9) (RDM 60% - AN 40%) James, C., and MacLeod, R.D.: 1993 : The problematic nature of education in palliative care. Journal of Palliative Care 9:4, 5-10 (reference 10) (RDM60%-CRJ-40%) MacLeod, R.D.: 1993 : Education in palliative medicine : a review. Journal of Cancer Education 8: 4, 309-312 (reference 11) MacLeod, R.D., Nash, A.: 1994 : Multidisciplinary palliative care education. Journal of Interprofessional Care 8:3.283-288 (reference 12) (RDM 70% - AN 30%) MacLeod, R.D., Nash, A. and Charny, M.: 1994 : Evaluating education in palliative medicine. European Journal of Cancer Care 3: 163-168 (reference 14) (RDM 60% - AN 30% - MC 10%) MacLeod, R.D.: 1997 : Teaching holism in palliative care and hospice. American Journal of Hospice & Palliative Care 14:1, 12-16 (reference 36) MacLeod, R.D., James, C.R.: 1997 : Improving the effectiveness of palliative care education. Palliative Medicine 11:5, 375-380 (reference 38) (RDM 60% - CRJ 40%) MacLeod, R.D., Robertson, G.: 1999: Teaching about living and dying. Education for Health 12:2,185-192 (reference 65) (RDM 80% - GR 20%) MacLeod, R.D.: 2000 : Learning to care: a medical perspective. Palliative Medicine 14:3, 209-216 (reference 66) MacLeod, R.D.: 2001 : On reflection: how doctors learn to care for people who are dying. Social Science & Medicine 52,1719-1727 (reference 67).

People with advanced dementia often struggle to maintain relationships and can ultimately experience social death before their physical death. Social death occurs when a person is no longer treated as an active agent in their relationships. Relationship-centred care acknowledges the relational nature of care-giving and care-receiving, validating the support needs of both care-givers, and the person receiving care. In the context of care-giving and care-receiving, a person with advanced dementia can become viewed as a passive recipient of care. In the context of caring for people with advanced dementia, more needs to be understood about how caring relationships can be sustained until the end of life in a way which challenges the social death of people with advanced dementia, and supports carers. Understandings of, and assumptions about, the effect of dementia on personhood directly affect the way people with dementia are perceived by others, the quality of their relationships, the quality of their care and the quality of their life. Dementia is often associated with the loss of the person. Kitwood (1997) has been highly influential within dementia care in challenging the loss of personhood, and reconsidering the grounds of personhood, emphasising relationships over cognition. Kitwood’s often cited definition of personhood is: ‘a standing or status bestowed on one human being, by another, in the context of relationship’ (Kitwood 1997 p8). Kontos (2004) however, critiques this social interactionist view of personhood, suggesting it potentially relegates the ‘body’ to a symbolic position rather than guaranteeing personhood. Her work examines the way that personhood is embodied, and how this persists when a person has advanced dementia. She suggests that attention to the embodied aspects of personhood could act as an important counter to the social death of people with advanced dementia, increasing the scope and opportunities for interpersonal relationships, and improved quality of care and quality of life. Zeiler (2013) and Jenkins (2013) develop this theory further, describing intercorporeal personhood springing forth through, and in, interaction, enabling individuals who cannot express themselves without support to do so in interactions. The principle aim of this doctoral research is to examine the care-giving/care-receiving relationship, in palliative dementia care, through the theoretical lenses described above. The research took place in a care home called ‘Primrose Hill’ (a pseudonym): a specialist dementia care home (without nursing), with an increasingly frail population with multiple co-morbidities. Fifteen residents died during the 10 months of the study. The research employed an ethnographic approach, using participant observation alongside interviews and group discussions with staff. Attention was given to how people with dementia responded to care and how they were positioned within the caring relationship; were they seen as passive recipients of care or as active agents, objects or subjects? The approach was appreciative in intent, based on the assumption that care home staff, and people with dementia who live in care homes, through their experience of the human encounter, have important things to teach families, and others working in dementia care, including policy makers and care regulators. When articulated and shared, their experiences can challenge the stereotype of dementia as a ‘death that leaves the body behind’. The empirical analysis revealed three keys facets which shape the caring relationship: body work (direct hands-on bodily care); recognising and supporting selfhood; witnessing and responding to suffering. These three facets of palliative dementia care are examined and reveal the way that people with dementia, even in the advanced stages, continue to experience and respond to the world, and those around them, until they die. This is used to develop the conceptual underpinning of relationship-centred palliative dementia care. The Senses Framework (Nolan et al 2006), which sets out the conditions required for relationship-centred care to occur, is expanded to incorporate embodied selfhood and intercorporeal personhood. The research concludes by arguing, using Ethic of Care theory as an interpretive framework, that an expanded understanding of personhood that includes the ‘body’ is vital, not only at the frontline, but also at a political and societal level, if care is to have integrity.

Background: The number of patients dying with advanced liver disease is rising dramatically. However, little is known about the experiences of these patients and their families in respect of their care and everyday life with the disease. Palliative care services are traditionally focused on cancer and more recently on other types of organ failure, but liver disease is relatively neglected. Aim and objectives: This study aimed to broaden our understanding of the experience of living and dying with advanced liver disease. Specifically, it sought to explore the dynamic physical, psychosocial, existential and information needs of patients and their lay and professional carers, and to review their use of health, social and voluntary services. Additionally, this study examined the utility of a qualitative longitudinal, multi-perspective methodology in end-of-life research. Methods: This study employed qualitative, multi-perspective serial in-depth interviews. Patients with different aetiologies of liver disease were recruited in hospital. They and their lay carers were interviewed up to three times over one year. Single interviews were undertaken with case-linked professionals. Interviews were recorded, transcribed and analysed using grounded theory techniques and NVivo 9. Results: 15 patients, 11 lay carers and 11 professional carers were recruited, and 53 interviews conducted. Uncertainty was the key experience at all stages of the illness, across all domains, and for all participants: patients, lay carers and professionals. This uncertainty related to the nature of the illness, the unpredictability of disease pathway and prognosis, poor communication and information-sharing, and complexities of care. Coping strategies demonstrated a continuous quest to manage uncertainty. Current care arrangements were a poor fit with the high levels of physical and psychosocial need identified. The ubiquitous uncertainty meant that a care planning approach was difficult to introduce. Employing a qualitative longitudinal, multi-perspective approach emerged as a useful and effective way in which to conduct research with this patient group and contributed new learning with regard to its application in end-of-life research. Conclusion: This study identified uncertainty as the central pervasive factor in the experiences of patients, lay and professional carers. The needs of this patient group are currently poorly met from diagnosis to bereavement. Uncertainty makes advance care planning important, but difficult to know when to start. More needs to be done to ensure that people living and dying with advanced liver disease and their families benefit from appropriate and timely supportive and palliative care.

I palliativ vård ingår det i sjuksköterskans ansvarsområde att ge stöd till den döendes närstående. Denna typ av vård är vanligt förekommande för många sjuksköterskor. Studien beskriver sjuksköterskors syn på hur stödet till närstående kan se ut.  Palliativ vård innebär att ge vård till patienter med sådan sjukdom som ej går att bota. Vården fokuserar här på att lindra symtom. Trots att det finns riktlinjer om hur palliativ vård ska utföras finns det gråzoner om vad som är rätt och fel. Sjuksköterskor har i tidigare forskning beskrivit att de har kunskapsbrist om hur de kan stödja närstående till palliativa patienter, vilket ledde till att de blev osäkra på vad de skulle göra. Det finns tidigare studier där det framkommer att sjuksköterskor ibland ser de närstående som ett hinder för god palliativ vård. Detta examensarbete är en litteraturstudie av elva vetenskapliga artiklar där analysen ger fyra olika teman om hur sjuksköterskan kan stödja närstående: möjliggöra närvaro, göra närstående delaktiga, ge omsorg till närstående och möta informationsbehov.    Det framkom bland annat att sjuksköterskorna strävade efter att få de närstående att närvara fysiskt, ge dem tid och anpassa miljön i rummet. Sjuksköterskorna ville göra närstående delaktiga i vården, både i hemmet samt på sjukhuset. Detta skulle ske på de närståendes villkor, och inget ska tas för givet. Det framkom även att de närstående hade behov av information. Informationen skulle vara byggd på ärlighet, vara korrekt, framlagd med respekt och med empati. Att ge omsorg till en närstående var ett återkommande tema. Detta innebar bland annat att sjuksköterskor gav känslomässigt stöd, avsatte tid för fysisk närvaro samt lyssnade på tankar och åsikter.   När analysen jämfördes mot annan forskning framkom det olika uppfattningar angående vissa åtgärder, men generellt bekräftas eller fördjupas det som framkommer i analysen. Detta examensarbete kan summeras som att sjuksköterskor arbetade för att identifiera och uppfylla de närståendes unika omvårdnadsbehov samt bemötte dem som unika individer. Resultatet ger en förståelse för hur sjuksköterskor kan stödja närstående till patienter i behov av palliativ vård. / Palliative care treatment is a common phenomenon to many registered nurses. When caring for a patient palliatively, the nurse should also care for the ones closest to the dying patient. Previous studies have shown that nurses are uncertain on how to support these relatives and that some nurses even see them as a burden. The aim of this study was to describe nurses’ views on how they can support the ones closest to the patients that need palliative care. The method used is a literature study, aiming at contributing to evidence based care grounded in analysis of qualitative research. Two electronic databases, Cinahl and Pubmed, were used for searches. Inclusion criteria were: studies should be written in the English language, no older than ten years, qualitative, presenting data in palliative care setting for adult patients only, and written from a registered nurse’s perspective. Eleven studies were included. Four themes emerged on how nurses give support: Facilitate presence, Involve the ones closest to the patient, Care for the ones closest to the patient and Meet informational needs. The conclusion is that the nurse should care for the ones closest to the patient as unique human beings and strive to fulfil individual nursing needs.

The South African Constitution (South Africa, 1996) states that access to healthcare services is a basic human right. The Patients’ Rights Charter (HPCSA, 2008: 6) stipulates that the provision for “special needs in the case of persons living with HIV or AIDS” and palliative care be “affordable and effective”. The need for palliative care in South Africa today continues to increase. Khan and Sayed 2011[2]) found that five years after commencement of anti-retrovirals, twenty five percent of their patients had passed away. This study was performed in the Eastern Cape which is one of the poorest provinces with the second highest HIV prevalence rate. Since 2008, Sophumelela Centre Incorporated has offered palliative care for HIV and AIDS patients in Buffalo City. Some of these patients and their families were interviewed about their experiences in this care centre. The South African Constitution (South Africa, 1996) states that access to healthcare services is a basic human right. The Patients’ Rights Charter (HPCSA, 2008: 6) stipulates that the provision for “special needs in the case of persons living with HIV or AIDS” and palliative care be “affordable and effective”. The need for palliative care in South Africa today continues to increase. Khan and Sayed (2011[2]) found that five years after commencement of anti-retrovirals, twenty five percent of their patients had passed away. This study was performed in the Eastern Cape which is one of the poorest provinces with the second highest HIV prevalence rate. Since 2008, Sophumelela Centre Incorporated has offered palliative care for HIV and AIDS patients in Buffalo City. Some of these patients and their families were interviewed about their experiences in this care centre.

The writing of this thesis is to investigate the role that the church can have with people living with HIV / AIDS. This investigation takes us both into the role of the Evangelical Christian Church as a healing community, and becoming a haven for those who walk alone and suffer quietly because no one cares. Never before in the history of the world have we faced such a pandemic. It knows no boundaries, leaving a path of death and destruction to all who treat it lightly. HIV / AIDS has touched every community within the global village. There is not a parliament or doctor that has not pondered this terrible disease. My question through this thesis is the role of the church. Can the church rise to embrace the enormous social need that HIV / AIDS presents. South Africa is a vast land with many race and cultural groupings. Effective therapy and pastoral care I believe transcends all race and cultural barriers. All human beings respond to love and shelter, the very basic of our human needs. South Africa has the highest rate of infection in the world. It is estimated that we will have over a million orphans to care for soon. Let the church not lag behind, let us set the pace of showing the love and care for all people with HIV / AIDS. / Dissertation (MTh (Practical Theology))--University of Pretoria, 2005. / Practical Theology / unrestricted

Palliative care is often not considered during care or is considered too late in the patient’s healthcare journey to provide much benefit. The underutilization of palliative care contributes to increased healthcare costs, poor patient outcomes, and decreased patient satisfaction. The practice-focused question guiding this evidence-based practice (EBP) project was whether an education program would increase nursing knowledge regarding palliative care criteria. The program was developed using Rogers’s diffusion of innovation model and a literature review to create educational tools and achieve a sustainable EBP change. An evidence-based decision tree was developed and used as a tool for teaching and learning. Other assessment tools included a pretest, posttest, and program evaluation. Twenty staff nurses from the same department participated in the education program. Registered nurses were selected based on the amount of regular face to face patient contact they have with patients. The education program increased knowledge of palliative care by 58% and validated the need for nursing education of palliative care criteria. The program might be beneficial to disseminate to all nurses who have patient contact. The potential for positive social change generated from findings of this project include improving satisfaction, quality of care, and outcomes of the patients and families benefiting from palliative care services.

The purpose of this qualitative study was to explore the process of complex healthcare decision-making by parents for their children within the milieu of a pediatric palliative care team. As healthcare has advanced, the number of children living with complex chronic conditions has increased. Decision-making by parents for their children referred to palliative care has not, up to this point, been widely explored by nursing. A purposeful sample of 22 participants, parents of children in life-limiting or life-threatening situations were asked: What matters most during the process of complex healthcare decision-making? A constant comparative method was used to analyze data collected from semistructured interviews and the theory of embodying parenting in the midst of conflicting complexity emerged. J. Watson’s (2020) theory of human caring grounded the researcher in living caritas processes throughout the study. All participants experienced a disruption of their expected parenting and family normal. Through constant comparative data analysis, the core category of embodying parenting was identified. Feeling respected as the parent, thoughtfully making right decisions, and maintaining presence support embodying parenting. The basic social process identified was finding a unique path. The process of finding a unique path included connecting with a supportive community, claiming decisional authority, moderating negative thoughts and feelings, and adjusting expectations. Living in peace was achieved by finding a unique path to embodying parenting in the midst of conflicting complexity. For the participants in this study, accepting circumstances, feeling gratitude, and perceiving life differently led to living in peace. / Includes bibliography. / Dissertation (Ph.D.)--Florida Atlantic University, 2020. / FAU Electronic Theses and Dissertations Collection

The heart failure illness trajectory is both complex and unpredictable, which makes providing palliative care services to patients with heart failure a challenge. As a result, although services are needed, few tend to be offered beyond basic medical management. The traditional model of palliative care is typically based on palliative care being considered a system of care delivery most appropriate for patients with a predictable illness/death trajectory, such as terminal cancer. This type of model, which is based on the ability to predict the course of a terminal disease, does not fit the heart failure trajectory. In this article, we propose a new model of palliative care that conceptualizes palliative care as a philosophy of care that encompasses the unpredictable nature of heart failure.

Background. Recent efforts have focused on improving pediatric palliative care to relieve physical and psychological suffering throughout the course of illness, as well as to improve care at the end-of-life (EOL). One area of attention has been medical training, as healthcare providers have often reported feeling ill-equipped to manage EOL issues. As a pilot study, we developed and evaluated a daylong educational workshop on pediatric palliative care for oncology fellows. Procedure. Fellows (N = 32) from 20 hospitals participated in one of two workshops covering palliative care topics, such as pain/symptom management, communication, ethics, and bereavement. Training, knowledge, behavior, and attitudes regarding pediatric palliative care were assessed before the workshop, and knowledge was re-assessed immediately afterwards. Results. Fellows reported a general lack of training in EOL care, and only 41% rated their education as at least "somewhat" adequate. Colleagues and personal experience were more often sources on EOL care, rather than formal classes or textbooks. Although fellows reported open attitudes toward palliative care, such as involving adolescents in decision-making, only half felt comfortable in the presence of a dying person. Fewer than half felt comfortable providing EOL care, managing families' expectations, or knowledgeable enough to discuss hospice with patients/families. Following the workshop, knowledge of palliative care increased significantly from 75 to 85% correct. Conclusions. Fellows reported open beliefs about palliative care, but acknowledged weaknesses in their training and level of competence. The workshop showed efficacy in improving knowledge, but additional research is needed to evaluate larger educational initiatives and their long-term impact on clinical services and family satisfaction.