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Cavanagh, C. (2004). Dignity and palliative care: A search to discover the true meaning of the concept of “dying with dignity”.
Abstract: This paper presents an exploration of a foundational goal of palliative care nursing which is to help patients die with dignity. The paper presents this practice exploration as a journey to gain understanding of the concept of dignity; the author notes that it does not avoid the difficulties encountered in practice situations because dying with dignity is unique and curiously also invisible and different for everyone. Much of human life is conducted through stories and much of nursing involves telling and listening to stories. Many of our social institutions are comprised almost entirely of opportunities for telling and retelling stories. Nurses are constantly listening to patients telling them what is going on in their lives and because of this the stories related here are written bold and raw. The three stories explore and reveal in-depth details of nursing practice that evolved and changed after reflection. The paper also reveals and explores the untold and often painful stories that challenge nurses' capacity to offer dignified care. To deepen the exploration towards discovering ways to articulate the complexity of dignity, the author reflected on the nature of the practice changes documented in the stories and then used a range of diverse literature and her love of the paintings and philosophy of a New Zealander, Ralph Hotere, to support her ideas that dignity is indeed a complex phenomenon.
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Richardson, C. A. (2005). Ever decreasing circles: Non-curative terminal illness, empowerment and decision making: Lessons for nursing practice. Ph.D. thesis, , .
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Meldrum, L. B. B. (2006). Navigating the final journey: Dying in residential aged care in Aotearoa New Zealand.
Abstract: New Zealand statistics project that the aging population of people aged 65 years and over will more than double in the next decade. This has implications for palliative care providers including hospices and hospitals because long-term inpatient care is not generally provided by hospitals and hospices. When dying patients need long-term care, residential settings become an option. The level of palliative care in these facilities is dependent on staff training and numbers. In general, staff are not trained in palliative care, neither do they provide the multidisciplinary facets that define palliative care as undertaken by hospices. This paper describes a practice development initiative using storytelling as the vehicle for introducing the concept of the Liverpool Care Pathway (LCP) for the dying patient into residential aged care settings. With the emergence of a reflective paradigm in nursing the concept of storytelling as a teaching/learning tool has grown. Many staff in residential care settings come from diverse ethnic backgrounds where for some, English is their second language. Storytelling therefore can be a useful approach for learning because it can increase their communication skills. The author suggests that the Liverpool Care Pathway for the dying patient is a model that can be translated across care settings, hospice, hospital, and community. It can demonstrate a framework that facilitates multiprofessional communication and documentation and embraces local needs, culture and language to empower health care workers to deliver high quality care to dying patients and their family/whanau and carers. This paper also explores the role of a facilitator as an agent of change and discusses how the interplay of evidence, context and facilitation can result in the successful implementation of the LCP into residential aged care settings.
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Campbell, K. (2008). Experiences of rural women who have cared for their terminally ill partners. In Jean Ross (Ed.), Rural nursing: Aspects of practice (pp. 166-178). [Dunedin]: Rural Health Opportunities.
Abstract: This chapter firstly offers background information in relation to palliative care and the role of women as providers of care in the home setting. Secondly, it discusses a study that evolved from a trend the author observed as a district nurse providing community palliative care in rural New Zealand and from New Zealand literature; that the majority of carers of the terminally ill in home-settings are women. The aim of this research study was to offer insights into the requirements of caring for a dying person at home and provide information to assist nurses working in the community and other women who take on the caregiver's role.
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Latta, L. (2005). Reflective storytelling to enhance learning from practice experience. In J. McDrury (Ed.), Nursing matters: A reader for teaching and learning in the clinical setting (pp.67-82).. Dunedin: Otago Polytechnic.
Abstract: The author looks at the value of using reflective storytelling as a teaching/learning tool in the hospice setting and examines constructs that provide a theoretical underpinning. She also outlines processes that support the implementation of storytelling practice and the creation of a safe space for storytelling. At the end of the chapter, discussion questions are provided by Janice McDrury.
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Sheward, K. A. (2005). Exploring the juxtaposition of end of life care in the acute setting and the integrated care pathway for the care of the dying.
Abstract: The primary aim of this research paper is to draw on the literature to offer some insight into end of life care in the acute hospital setting. The secondary purpose is to provide an understanding of the integrated clinical pathway (ICP) for the care of the dying, consider its influence related to some of the challenges shaping end of life care and the positive effect it can generate on the quality of care experienced. There are significant challenges that impact on both the delivery and receipt of care for dying patients and their families. Six key influential barriers are considered within the context of the acute setting. Communication and the acute environment are two areas that significantly impact on the quality of care delivered, and are explored in more depth. Narratives from nursing and medical staff convey the realities encountered and difficulties experienced when they are unable to provide the care to which they aspire. Stories are shared by patients and families, which reflect on their experience of end of life care in the acute setting, and offer heath professionals some insight into the lives of the people nurses care for. The literature in relation to the development and implementation of the Liverpool Care of the Dying Pathway, and an overview of the Pathway document is presented. The strengths and limitations of its use are considered, alongside its influence beyond the documentation of clinical care. It is not possible to transfer the hospice service into the hospital setting, however the author suggests that through the implementation of the clinical pathway there is an opportunity to transfer best practice guidelines and positively influence the palliative culture in the acute setting.
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Maries, V. J. (2004). Chosen moments: A reflective journey illustrating terminally ill patients choosing the moment to die.
Abstract: In this project the author reveals how she is observing and thinking as she cares for people who are dying. She records her reflections and insights and reveals that there is life right up to the moment of death, having observed terminally ill patients choosing the precise moment to die. She describes her observations of these moments by using poetry and stories, and explores the implications for her practice as a result. The author presents her reflections using an individualistic, reflective and exploratory perspective which is informed by the work of nursing scholars. This paper is framed using the metaphors of a journey and a window to indicate the reflective process that the author used to journal her observations in practice over time.
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Archer, L. K. (2001). We talk what we do: An exploration of the value, role and function of storytelling in nursing from one nurse's practice perspective.
Abstract: The role of storytelling in any society fulfils multiple functions such as maintaining culture, holding history, teaching genealogical lessons, imparting wisdom, entertaining, passing on knowledge. The author suggests that nursing, historically described as a craft with an oral tradition, could be seen to be quietly moving away from the practice of storytelling. Or has it? She asked this question and began to realise that her practice and relationships with colleagues had always been based on stories and storying. To explore this phenomenon, she began to describe her day to day practice in story form, and began to position stories she had previously written. In her work of oncology palliative care nursing within a community setting in New Zealand, the stories proved crucial to her role as an educator, and companion of patients and their families. In this paper she examines how she uses story for her benefit, the patients' benefit, but mainly for the benefit of nursing. She examines from her own perspective, some underlying themes that reinforce the need to continue this ancient tradition and explore the role, value and function of storytelling within nursing.
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Latta, L. (2007). Exploring the impact of palliative care education for care assistants employed in residential aged care facilities in Otago, New Zealand. Ph.D. thesis, , .
Abstract: Palliative care is a growing specialty in New Zealand with many well-established hospices and palliative care services around the country. However palliative care is not confined to specialist units and is in fact an element of all health services. The aged care sector is one of those services where patients with palliative care needs are prevalent and this is now beginning to be recognised. In these settings care assistants, most of whom have no training, make up a large component of the workforce providing care for residents with increasingly complex needs. In 2005, Hospice New Zealand responded to the recommendations made by the New Zealand Palliative Care Strategy (Ministry of Health, 2001) by developing an eight-hour palliative care course for care assistants employed in residential aged care facilities. The main objective of the course was to increase care assistants' ability to deliver a high standard of palliative care to their residents within their scope of practice.This qualitative study uses descriptive, semi-structured interviews to explore the impact that attending the course had on care assistants and their practice by inviting them to share stories of their experiences caring for dying residents. Factors influencing the implementation of learning in the workplace were identified. The results showed that while attending the course had a positive impact on participants, they were restricted in the extent to which they were able to apply new learning in the workplace, which was largely due to factors that were out of their control. As a result, recommendations are made to enhance workforce development in the aged care sector and to minimise the barriers to the implementation of learning.
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Campbell, K. (2004). Intertwining the role of partner and caregiver: A phenomenological study of the experiences of four New Zealand rural women who have cared for their terminally ill partners. Ph.D. thesis, , .
Abstract: The stories of the women who live and work in rural settings in New Zealand have begun to reveal unique contributions that they have made to their families and community. This research study evolved from a trend the researcher observed as a district nurse providing community palliative care in rural New Zealand; that the majority of carers of those who are terminally in home-settings are in fact women. This qualitative study aimed to explore through guided conversational interviews the experiences of four women who have cared for their terminally ill partners who have subsequently died. The study investigated if these women's experiences were comparable to that of other women in existing palliative care literature. This research project focused particularly on elucidating the women's experience of intertwining the role of partner and caregiver. Heidegger's hermeneutic philosophy informed the methodology because he focused on what it meant to 'be' rather than 'how we know what we know'. The project focused on the meanings the women made of this dual role in their lives. Women already in the role of partner were now faced with the added responsibility of caregiver to meet the complex needs of their loved one. Usually they had no training to prepare them for this experience. The study reveals ways in which the visiting palliative care nurse becomes very important to them. The women's own voices reveal the high level of respect for their partners and address the harsh realities, revealing poignant and striking concerns in their lives. These stories are shared with the intent of enriching nurses' and other health professionals' understanding of the women's experiences. The author notes that understanding these women's experience is not only a way of honouring these remarkable women but more widely it will inform and possibly transform practice through guideline and policy refinement.
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Bray, Y. M. (2004). A migrant family's experience of palliative nursing care. Ph.D. thesis, , .
Abstract: The focus of this research was to explore the migrant family's experience in palliative care. In writing this thesis, the author notes that it became evident that cultural safety was a connection that warranted further study in relation to end-of-life nursing care as was illustrated by the intergenerational case study of this migrant family in New Zealand. The use of the case study method of qualitative research enabled the voice of the migrant to be heard and the story of the migrant family's experience to be showcased. The uniqueness of this family's palliative care experience was around the religious and cultural needs and migration as a process of transition from a previous society to a new one. Palliative care was defined by the family approach with strong community support and empowered by culturally safe and appropriate nursing practice. End-of-life illness is a time when cultural perspectives are challenged for patients and their families and religious and cultural practices take on a new priority, regardless of how they have lived life previously. As a migrant nurse living and working in the New Zealand context, the author identifies as an important factor, the nurse-patient interaction as an encounter between two cultural perspectives, the patient's and the nurse as bearer of her own culture. Acknowledging this factor is an important step in developing a culturally safe approach to practice, an approach that proved to be a major ingredient in planning and caring for this patient and his family in end-of-life illness. This study and thesis explores the underpinnings of culturally safe palliative nursing care and identified 'reflexive bracketing' as a useful practice in the process.
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Johnson, S. (2007). Hope in terminal illness. Ph.D. thesis, , .
Abstract: Hope is considered an elusive, vague, over-used, and ambiguous concept in nursing practice which lacks clarity, but hope is essential to the quality of life in the terminally ill. Therefore, hope is an important concept to research further. A gap in nursing research has been identified in the area of hope in terminal illness. The aims of this research were to clarify the concept of hope as perceived by patients with a terminal illness; to develop hope as an evidence-based nursing concept; and to contribute new knowledge and insights about hope to the relatively new field of palliative care. Utilising Rodgers' (2000b) evolutionary concept analysis methodology and thematic content analysis, 17 pieces of research-based literature on hope as perceived by adult patients with any terminal illness pathology (from the disciplines of nursing and medicine) have been reviewed and analysed. Hope's attributes, antecedents, consequences, social-cultural variations, temporal variations, surrogate terms, and related concepts have been considered. An exemplary case of the concept in action is presented along with the evolution of the concept hope in terminal illness. Ten essential attributes of the concept were identified in this research: positive expectation, personal qualities, spirituality, goals, comfort, help / caring, interpersonal relationships, control, legacy, and life review. The evolution of hope in terminal illness has evolved from patients hoping for a prosperous healthy future to an enrichment of being is more important than having or doing. Patients' hopes and goals are scaled down and refocused in order to live in the present and enjoy the time they have left with loved ones. Hope in the terminal phase of one's illness is orientated in the past and the present, hope in the here and hope in the now. The author concludes that by completing all the steps to Rodgers' (2000b) evolutionary view of concept analysis, a working definition and clarification of the concept in its current use has been achieved, providing a solid conceptual foundation for further study. Recommendations are made for hope-enhansing strategies, that may help to maximise the quality of life of terminally ill patients in the future.
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McLoughlin, N. (2007). Dying to know: Advancing palliative care nursing competence with education in elderly health settings. Ph.D. thesis, , .
Abstract: This paper explores the benefits of using education as one means to advance palliative care competence for nurses. A literature search was conducted revealing numerous educational initiatives and approaches have been developed to improve palliative care. Benefits include improved nursing knowledge, confidence and competence which directly correlate with improved patient outcomes. Accompanying the shift of palliative care from hospices to varied health care providers globally, are disparities in care provision. The literature suggests that reasons for such disparities include insufficient specialised palliative care knowledge and skills of nurses to effectively deliver this care within generalist health settings and lack of information for caregivers. In response, approaches aimed at improving palliative care include reviewing, redefining and implementing nursing roles, education courses, and theoretical frameworks to inform practice and improve outcomes. This paper focuses on the benefits of offering tailored palliative care education in work settings to improve patient care. One entrepreneurial education initiative aimed at advancing palliative nursing and which is currently being implemented in aged care contexts is shared. Careful strategic planning and working more collaboratively between all stakeholders, is strongly recommended in order to manage current and future challenges. Advancing palliative nursing care using appropriate education is achievable and beneficial but is fraught with complexities.
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Hall, K. A. (2003). Soothing sounds: An investigation into the value of music in palliative care. Ph.D. thesis, , .
Abstract: This qualitative study focuses on van Manen's theory of the 'lived experience' in relation to two families and asks the first thesis question. What is the value of music in the care of someone who is dying? Over the course of their loved one's illness these families provided music in the patients home as part of their care. The study also captures the experiences of two nurses who work in the palliative setting, and their use of music in providing holistic care to their patients. Their experiences relate to the second question. How can nurses be assisted in introducing music into their planned care of patients? The results demonstrate the effectiveness of using taped music for someone who is dying, and the reduction in symptoms, such as anxiety, and pain. It also highlights the importance of the individual's choice, and the special moments that can be achieved for both patient and families when music is used in a caring, supportive environment. This encourages communication, especially in the sharing of emotions. This study may be the first qualitative study in New Zealand, that addresses the value of music in palliative care, therefore there is a need for continued research into this therapy as a treatment modality as part of planned care in palliative nursing.
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Hammond, S. (2001). Parallel journeys: Perceptions of palliative care. Ph.D. thesis, , .
Abstract: The delivery of palliative care within contemporary New Zealand society is discussed, in the light of the recent publication of The New Zealand Palliative Care Strategy (2001). The viewpoint taken is largely descriptive rather than prescriptive, being based on a literature survey of international research and academic theory, which is also informed by the author's professionally gained knowledge. Four different perspectives, comprising a mix of providers and recipients of care are investigated: those of central government planning; specialist palliative care units; aged-care complexes; and patients, family and whanau. As an area of healthcare which current demographic projections indicate will become increasingly significant, the provision of palliative care to residents of and patients within aged-care complexes receives special attention. A metaphor of “parallel travellers” on “parallel journeys” is used to provide a thematic basis to the paper. The lived experiences and perceptions of each group of “parallel travellers” are explored. Difficulties in defining and evaluating palliative care, the implications of main-streaming, the scope of palliative care provision, the educative role of specialist palliative care providers and the current focus on mechanistic outcome measures are discussed. It is contended that the values and goals, both explicit and implicit, of the four specified groups may not at present be sufficiently congruent to optimise the effective provision of palliative care from the point of view of all concerned. While adequate resourcing and a genuinely collaborative approach among healthcare providers are both acknowledged to be critical, the potential for palliative care nurse practitioners to be appointed to the role of “care co-ordinator” alluded to within The New Zealand Palliative Care Strategy (2001), is also seen as pivotal. Insights from a postmodern perspective are offered as one possible way of achieving greater congruence.
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