Pam McGrath

Caregivers' insights on the dying trajectory in hematology oncology

It is increasingly acknowledged in the research literature that palliative care is not offered to patients with a hematologic malignancy. The evidence indicates that patients are not dying at home or in the comfort of the hospice setting but are more likely to end up in the high-tech care of an intensive care unit. The holistic, compassionate care of the hospice/palliative care philosophy is not routinely made available to either these patients or the families who care for them. However, little is known about what the end-of-life experience is for such patients and their families and how they are managing to negotiate their dying experience in a system that is designed to cure not to palliate. In particular, there is a dearth of information on what happens to the caregivers during what is characteristically a prolonged and difficult period of sustained caring within the high-tech system. This discussion presents findings from recent research that is beginning to document the experience of the dying trajectory for patients from these diagnostic groups and their families. The hope and expectation from such research is that the information will make a contribution to building multidisciplinary plans of care for hematologic malignancies during the dying trajectory, to ensure that patients and their families are appropriately referred to the palliative system or, at least, are given sensitive palliative care within the curative system.

Needs and experiences of non-English-speaking hospice patients and families in an English-speaking country

There is increasing evidence that, in practice, hospice care is predominantly accessed by white, middle-class patients, who live in stable home environments with available caregivers and other supports. The present challenge for researchers, administrators, and clinicians is to identify populations of terminally ill patients most in need of hospice care and to direct services to these patients. As a contribution to the development of this area, this paper presents the findings from a recent Australian hospice study that examines the needs and experiences of families from non-English-speaking backgrounds. The findings indicate that it is as important to focus on similarities as it is to highlight differences.

Accommodation for patients and carers during relocation for treatment for leukaemia: a descriptive profile

Abstract Patients with haematological disorders and their families must adjust to a wide range of psychosocial stresses, including coming to terms with a life-threatening diagnosis and coping with aggressive and invasive treatment regimens. The stress of this situation is exacerbated for many patients who must relocate to a metropolitan area for specialist treatment. This discussion presents research findings that indicate that for many of these patients the need for accommodation during relocation for treatment is a problem that should be given serious consideration. It is anticipated that this descriptive profile of a successful response to the problem of accommodation for leukaemia patients will provide useful data for the development of such services elsewhere.

What should I say?: qualitative findings on dilemmas in palliative care nursing.

The nursing literature suggests that talking and listening to patients about issues associated with death and dying, is both important and difficult, and may be improved with training. This discussion presents the results of recent nursing research to confirm, and elaborate on, this theme. In this research participants touched on many central issues in communicating with patients that included articulating a sense of discomfort and inadequacy about the whole process, detailing the innumerable blocks to open communication [e.g., interference, denial, unrealistic optimism, resistance, collusion and anger] and sharing their sense of success and failure. The insights of nurses who participated in this research testify to the ongoing need to prioritize the development of nursing skills and support in this challenging but important area.

The ‘Right Story’ to the ‘Right Person’: Communication Issues in End-of-Life Care for Indigenous People

OBJECTIVES To explore communication issues faced by health care workers and Indigenous patients and their families in a palliative care setting. Effective communication with Aborigines is especially important because Aboriginal beliefs of health and sickness are so different from Western views. METHOD Data were collected from 72 qualitative interviews conducted throughout the regional, rural and remote areas of the Northern Territory with Indigenous patients and carers and the health professionals who care for them. RESULTS Participants highlighted the struggle associated with effective communication when working in a cross-cultural setting at the interface of Indigenous and Western health care. The findings record the wisdom and insight from practitioners who have extensive experience dealing with communication difficulties.

EXPLORING EMPATHY AS A VARIABLE IN THE EVALUATION OF PROFESSIONAL DEVELOPMENT PROGRAMS FOR PALLIATIVE CARE NURSES

Research indicates that empathy, a quality regarded as fundamentally important to nursing practice, is a teachable skill. Because empathic nurse-patient relationships are particularly important in the care of the terminally ill, this has direct relevance to the professional development of palliative care nurses. This article discusses the place of empathy as a criterion variable in the evaluation of a professional development program for palliative care nurses introduced at the Centre for Mental Health Nursing Research at Queensland University of Technology, Brisbane, Australia. A modified version of the Staff-Patient Interaction Response Scale (SPIRS) was used as a pre- and postintervention measure to assess the expressed empathy of the participating nurses. The modifications to SPIR and its coding system to make it suitable for palliative care nursing, and the mechanisms for improving and evaluating the reliability of this instrument will be discussed. The full description of this particular modification of SPIRS for palliative care research is provided as an example of how this instrument could be used in projects for which nurses undertake the difficult task of providing compassionate care to the terminally ill.

The case for Aboriginal Health Workers in palliative care.

OBJECTIVES The findings are drawn from a 2-year research project, funded by the National Health and Medical Research Council (NHMRC), which aimed to develop an innovative model for Indigenous palliative care. The findings presented in this article explore one important strategy for putting Aboriginal families and their communities at the centre of the model: that is, the employment of Aboriginal Health Workers (AHWs) in relation to the provision of palliative care in the Northern Territory. METHODS The data were collected from 72 qualitative interviews conducted throughout the regional, rural and remote areas of the Northern Territory with Indigenous patients and carers in the Northern Territory and the health professionals who care for them. RESULTS While highlighting the valuable role of AHWs, the findings emphasise that the current lack of availability of such workers for palliative care provision for Indigenous peoples needs serious consideration.

Description of an Australian Model for End-of-Life Care in Patients With Hematologic Malignancies

PURPOSE/OBJECTIVES To present a model for end-of-life care in adult hematology that has been developed from nursing insights. DATA SOURCES Insights obtained from 25 nursing interviews during a two-year, qualitative, Australian National Health and Medical Research Council research study. DATA SYNTHESIS The nursing insights indicate that an understanding of end-of-life care in hematology needs to be set in a trilogy of overlapping models (labeled functional, evolving, and refractory) that address the complexity of issues associated with professional and hospital culture. CONCLUSIONS The authors have used the findings of their national research study to develop a useful, working model to assist with the integration of palliative care into adult hematology. IMPLICATIONS FOR NURSING The model develops a new language for understanding and fostering the integration of palliative care and hematology.

The Impact on Sexuality After Diagnosis and Treatment for a Hematologic Malignancy: Findings From Australia

PURPOSE/OBJECTIVES To present findings on the impact of diagnosis and treatment on sexuality for those diagnosed with a hematologic malignancy. RESEARCH APPROACH A qualitative design based on a series of open-ended interviews and one focus group. SETTING Queensland, Australia. PARTICIPANTS 50 participants representing the major hematologic diagnostic groups. METHODOLOGIC APPROACH Interviews were recorded, transcribed verbatim, and then coded and thematically analyzed for the research. FINDINGS The impact of the disease and treatment on sexuality ranged from participants experiencing no problems or having a brief impact that passes over time, to those who reported serious problems that significantly affected their life satisfaction. Some concerns were raised about the taboo nature of sexuality and the lack of discussion on the topic. CONCLUSIONS The findings contradict prior research that all patients with cancer will experience an impact on their sexuality by diagnosis and treatment. The current study indicates that a small subgroup of individuals diagnosed with hematologic malignancies are acutely distressed about issues regarding sexuality and require follow-up. INTERPRETATION Individuals diagnosed with a hematologic malignancy may have difficulties with their sexuality and will, therefore, require follow-up or assistance. A subset of individuals will require understanding, support, and, for some, referral to follow-up with a specialist. As major obstacles still exist for patients accessing appropriate professional support and advice on sexuality, oncology nursing can provide leadership in this area.

Buddhist spirituality—a compassionate perspective on hospice care

The practical, everyday metaphysic of Buddhist philosophy, which is based on notions of compassion and wisdom, a willingness to serve, tolerance, a duty to do no harm, and the significance of death, shares a commonality with hospice discourse. This discussion explores the connection between these two compatible discourses by detailing some of the findings of research recently completed on a Brisbane community-based, Buddhist hospice service (the Karuna Hospice Service).