bluuebunny/crossref_metadata_2025 huggingface dataset:
Voluntary refusal of food and fluids: attitudes of Oregon hospice nurses and social workers
Authors: Harvath Theresa A , Miller Lois L , Goy Elizabeth , Jackson Ann , Delorit Molly , Ganzini Linda
Published: May 2014

As the ethical debate about euthanasia and physician-assisted suicide (PAS) continues, one alternative that has been suggested is for the patient to voluntarily refuse all food and fluids (VRFF). This article describes the results of a study of hospice nurses’ and social workers’ attitudes towards VRFF and compares them with their attitudes towards PAS. In 2001, a questionnaire was posted to nurses and social workers who care for Oregon residents enrolled in hospice programmes to determine their attitudes towards PAS and VRFF. In general, hospice workers expressed support for patients who choose to hasten their death by VRFF; they were less supportive of PAS. The results from this study suggest that perceptions regarding VRFF are significantly different from those regarding PAS. These results may have important clinical implications for nurses and social workers involved in end-of-life care who encounter patients who wish to hasten their deaths.
Is terminal sedation compatible with good nursing care at the end of life?
Authors: Woods Simon
Published: May 2014

In this article I seek to clarify the definition of terminal sedation and make the distinction between terminal sedation and euthanasia. Crucial to this is the recognition that decisions regarding withholding or withdrawal of hydration and nutrition are distinct, but related, to decisions regarding sedation. I shall argue that sedation can be placed within the spectrum of other palliative interventions and that terminal sedation can be compatible with good nursing care at the end of life.
The euthanasia debate: strong views, different views
Authors: Smythe Dion
Published: May 2014

The concept and clinical goal of a ‘good death’ is fundamental to palliative care. Today, one of the most profound personal, public, professional, and policy debates is concerned with the issue of euthanasia and assisted suicide. This month’s Web Words examines sites that explore and expand our knowledge of the discussion.
A phenomenological study of the lived experiences of people with lymphoedema
Authors: Williams Anne F , Moffatt Christine J , Franks Peter J
Published: May 2014

Lymphoedema occurs in all age groups and is caused by lymphatic insufficiency. It is associated with a wide range of cancer- and non-cancer-related conditions. Researchers have explored the impact of lymphoedema on quality of life but most studies have focused on breast cancer-related lymphoedema or used specific quality of life tools. The study reported here used a phenomenological approach to explore the lived experience of 15 individuals with different types of lymphoedema. Findings highlight the uncertainty surrounding their diagnosis, the difficulties they experienced in accessing appropriate treatment and ways in which they dealt with having lymphoedema. Recommendations are made highlighting the need for increased awareness of lymphoedema and the importance of wider consideration of the emotional and psychosocial dimensions of this chronic condition.
Shaping the practice of home care: critical case studies of the significance of the meaning of home
Authors: Williams Allison M
Published: May 2014

Changes in health-care service delivery have resulted in the transfer of care from formal spaces, such as hospitals and institutions, towards informal settings, such as home. As the home environment not only designates a dwelling but also represents a multitude of meanings, such as personal identity, security and privacy, that may vary according to socioeconomic and sociodemographic variables, it presents a complex site for study. This article uses two contrasting in-depth qualitative case studies to refine the application of the Health at Home Model in Home Healthcare Practice (HHMHHCP) (Roush and Cox, 2000). An addition to the original three dimensions of the model (home as familiar, home as centre and home as protector) is suggested – home as locator. Research directions to further understand the role of caregiving in contributing to the experience and meaning of the home environment by informal caregivers are discussed.
Loss of appetite: a poetic exploration of cancer patients’ and their carers’ experiences
Authors: Souter Jill
Published: May 2014

Aim To explore the experience of loss of appetite among palliative care cancer patients and their carers supported by a specialist palliative care team in the community.

Method Semistructured interviews were conducted with seven palliative care cancer patients and their carers in the community. A poetic transcription of participants’ words was made to capture and communicate the essence of each person’s experience before the thematic analysis was undertaken.

Findings Six common themes emerged from the data: a fickle phenomenon; the cost of caring; facing uncertainty and death; adaptations; accepting limitations; and what patients want: ‘listen to me’. These were illustrated by the poetic transcriptions.

Conclusion Meeting the differing needs of palliative care patients with loss of appetite and their carers is challenging. It demands a thorough assessment of symptoms, an understanding of the underlying pathophysioloigy and of the role food plays in society. An understanding of the experience of loss of appetite is essential to the provision of appropriate care and support to those affected by it. The study demonstrated that, although unusual, poetic transcriptions can be an effective method of presenting data in terms of acceptability to participants and communicating their experience to others.
Website resources that consider haematological cancers
Authors: Smyth Dion
Published: May 2014

Haematological cancers constitute a significant proportion of the total global cancer burden. In response, the field of haematological oncology is typified by rapidly advancing technological interventions. These are being administered increasingly at all stages of the disease trajectory, and at all levels of care and care settings. The patients who have haematological malignancy undergo treatments that may be difficult, demanding and distressing and, with the disease itself, be associated with a significant symptom experience. It is, therefore, vital that nurses have an understanding of the diseases that they may encounter.
Developing end-of-life care for older people in care homes
Authors: Froggatt Katherine
Published: May 2014

In developed countries an increasing number of older people die in long-term care settings such as care homes. In the UK, approximately 20% of people aged 65 years and over die in care homes, compared to only 4% in hospices (Office for National Statistics, 2000). A case has been made that older people living in long-term care settings will benefit from palliative care (Kristjanson et al, 2005). Within the UK, the provision of palliative care in care homes is now the focus of a national and many local initiatives. This work promotes the use of specific end-of-life tools, e.g. the Gold Standards Framework, the Liverpool Care Pathway and the Preferred Place of Care Plan. These tools provide staff working in care homes with an ordered way to manage dying. They offer structure in the midst of the uncertainty that accompanies dying.
Using computer-assisted learning to gain knowledge about child death and bereavement
Authors: Pfund Rita
Published: May 2014

Computer-assisted learning (CAL) can be a useful tool in helping nurses to learn about child death and bereavement. A CAL package on the care of children with life-limited illnesses and their families has been designed, developed and evaluated with students on the diploma in nursing (child) programme. Early indications are that CAL, in conjunction with teacher support, can offer a means to allow individuals to work at their own pace, apply learning and explore new learning in a non-threatening environment. This article argues that the skills required to care holistically for children with life-threatening illnesses and their families are complex. Extensive applications of previously learnt transferable skills, as well as a good grasp of multidisciplinary working, are needed. In turn, these skills are transferable and applicable in almost any other professional situation. CAL combines different learning styles, such as factual information giving, enquiry-based and practice-based learning; therefore, integrating learning about child death and bereavement both in theory and in practice.
Wound management resources for palliative care patients
Authors: Smyth Dion
Published: May 2014

Malignant and uncontrolled fungating wounds may have a significant impact upon the physical, psychological and social wellbeing of patients and their families. They also represent a considerable burden on health service resources in terms of treatment over potentially prolonged periods.
Seeking and using families’ views to shape children’s hospice services
Authors: Maynard Linda , Rennie Tracy , Shirtliffe Julia , Vickers David
Published: May 2014

Child and family involvement is key to improving the quality of children’s hospice services. This article reports on a quality assurance initiative undertaken as one component of a clinical governance strategy. Service users participated in focus groups followed by lunch to discuss how staff communicated with them about their child’s care, their family support needs, and how staff liaised with other professionals and organizations. There was general commendation of hospice services (in-house and community), but parents wished for more quantity and consistency with all elements of the care model. There was tension between respite and end-of-life care needs. Parents considered that the myth of hospices being ‘just for death’ needed dispelling and wanted other professionals to be more aware of its role, and the choice of earlier referral. Transition, both age and prognosis related, caused concern, with anxiety about long-term future or loss of support when prognosis improved. Parents also wanted better information about practical help and psycho-social support as well as up-to-date information about their child’s treatment and management from all care providers.
Nursing documentation: non-physical dimensions of end-of-life care in acute wards
Authors: Hegarty Meg , Hammond Lynne , Parish Karen , Glaetzer Karen , McHugh Annie , Grbich Carol
Published: May 2014

Aim To explore discrepancies between nurses’ knowledge and their documentation of issues of psychosocial, spiritual and cultural aspects of palliative care, evidenced clearly in recent nursing research into end-of-life care in an acute care, teaching hospital.

Design The study involved a retrospective patient case-note audit of an opportunistic sample of 20 patients deceased recently and interviews of the two nurses most involved in the care of each patient (n=40).

Findings This research indicates that nurses in acute care settings often recognize, sometimes explore, but infrequently document psychosocial, spiritual and cultural aspects of care.

Conclusion There is a strong need for: (1) education about both the impact of non-physical dimensions of patients’ lives and the effective documentation of these dimensions; and (2) up-grading of documentation tools to better facilitate documentation of non-physical aspects of palliative care.
A research study to identify facilitators and barriers to outcome measure implementation
Authors: Dunckley Maria , Aspinal Fiona , Addington-Hall Julia M , Hughes Rhidian , Higginson Irene J
Published: May 2014

Aim

To identify facilitators and barriers to implementing outcome measures.

Methods

An action-research approach within a hospice and nursing home was used. Staff took part in semistructured interviews pre- and post-implementation of the Palliative Care Outcome Scale (POS), completed diaries and participated in monthly meetings.

Findings

Qualitative content analysis identified barriers to implementation including: a top-down decision-making approach; outcome measures perceived as time-consuming to use; limited resources for data analysis; and a lack of knowledge of the importance of outcome measures. Facilitators to successful implementation include: involving all staff in decisions about implementation; and using a measure that can be adapted to organization needs and clinical practice. The benefits of using the measure are rapidly noticeable.

Conclusions

Given the need to evaluate services and the role outcome measures can have within clinical governance, this article indicates methods by which measures may be more successfully implemented.
Corneal donation within palliative care: a review of the literature
Authors: Edwards Philip
Published: May 2014

Corneal donation occurs infrequently within palliative care, even though the majority of the public say they are in favour of donating organs and tissue after death. One of the roles of the health professional is to provide patients with the necessary information to make choices, and this should include the option of donating their corneas should they so wish. This literature review explores how the subject can be raised in a systematic manner within palliative care. It looks at the potential benefits and dangers of involving the patient in such discussions, and the effects on the families. Practical issues, such as when to raise the issue, are also considered. Finally, the review discusses the implications for nursing practice and research.
Communication is key to care
Authors: Cooley Candy
Published: May 2014

At the end of September I joined delegates from all over the world at the 14th International Cancer Conference for Nurses in Toronto. Diversity and cultural differences were reduced by the common theme of caring for patients with a diagnosis of cancer. Palliative care issues were evident – amazing services being developed across the world and, less positively, the great discrepancies in access to drugs.
Mentoring in palliative nursing: a personal reflection
Authors: Trowell Frances
Published: May 2014

The concept of mentoring began to appear in nursing literature in the 1980s (Andrews and Wallis, 1999). In 1987 the English National Board (ENB) refers to mentors as ‘wise reliable counsellors’ and ‘trusted advisors’ (ENB, 1987). In 2001 the ENB and the UK Department of Health (DH) formalised the mentoring and assessing roles for nurses and midwives. The mentor was defined as:
Palliative sedation: Nurses’ perceptions
Authors: Beel Alexandra C , Hawranik Pamela G , McClement Susan E , Daeninck Paul J
Published: May 2014

Patients with advanced illnesses suffer from a myriad of distressing symptoms. Palliative care aims to alleviate the distress caused by such symptoms. In extreme circumstances palliative sedation may be implemented to manage symptom distress that is not responsive to standard treatment modalities. Nurses are involved in the care of patients receiving palliative sedation as well as their families. To date, however, little research has been conducted examining the nurses’ experiences with, and perceptions about the use of palliative sedation in end of life care. In order to redress this gap in the literature a descriptive-exploratory study guided by the theory of symbolic interactionism was conducted. Face-to-face interviews were conducted with 10 nurses working on an adult in-patient palliative care unit within a long-term care facility in Canada. The major theme emerging from content analysis of interview transcripts was that of ‘Working your way through the quagmire’. The metaphor of the quagmire captured the difficult and complex issues nurses grappled with in instances where palliative sedation was used, and integrates the major categories into the key analytic model emerging from this study.
Developing guidelines for syringe driver management
Authors: Kain Victoria J , Yates Patsy M , Barrett Linda , Bradley Toni , Circosta Mary , Hall Anthony , Hardy Janet , Israel Fiona , McLeod Lesley , Vora Rohan , Wheatley Helen
Published: May 2014

The aim of this project was to develop clinical practice guidelines for the use and administration of pharmacological agents for symptom control via syringe drivers within Australia. By developing evidence-based clinical practice guidelines for the use of this common device, this project aimed to improve patient outcomes, reduce practice variation, minimize errors and encourage more efficient use of resources. A literature review identified current literature regarding syringe driver management and an expert panel was assembled to assist in the development of the guidelines. The development of these practice guidelines provides an example of how palliative care practitioners can use a framework of contemporary evidence to enhance clinical practice.
Case reviews: promoting shared learning and collaborative practice
Authors: Bellamy Alison , Fiddian Mo , Nixon Jane
Published: May 2014

This article identifies the way a hospice team and their community colleagues are taking a different approach to the case-review process, aimed at enhancing professional development and palliative care practices by fostering multiprofessional relationships. Case reviews or studies are a traditionally recognized teaching and learning strategy. This group takes a different view of the case-review process and uses it as a proactive learning tool, valued by the participants. The audit of the process highlights how this forum assists in the development of mutual trust and respect among teams. The formal evaluation has shown evidence of improved communication and challenged thinking in relation to changing practice. The results of this experience could be considered in other areas where multiprofessional teamwork is essential.
Explanatory models of dementia: links to end-of-life care
Authors: Downs Murna , Small Neil , Froggatt Katherine
Published: May 2014

We will describe four models used to understand dementia: as a neurological condition; as a neuro-psychiatric condition; as a normal part of ageing; and seeing dementia from a person-centred perspective. Adopting the last of these allows an engagement with palliative care that has the potential to enrich the end-of-life experience of people with dementia, of their families and of the professional care staff who work with them. In this article, it will be argued that our perceptions of what is possible for practising person-centred care at the end of life are constrained by the paradigms we work within. There is developing evidence about how approaches to end-of-life care for people with dementia can move beyond what was, at best, therapeutic pessimism and at worst ill-treatment towards something that optimizes the capacities of those with dementia and mobilizes imaginative care practice.
Residential aged-care facility palliative care guidelines: improving care
Authors: Currow David C , Hegarty Meg
Published: May 2014

The Guidelines for a Palliative Approach in Residential Aged Care (Australian Government Department of Health and Ageing, 2004) are the result of the synthesis of evidence from three disciplines: geriatrics, gerontology and palliative care. Each paradigm challenges and informs the others, together developing a balanced and enriched understanding of palliative aged care. The guidelines address the challenges of the clinical and service delivery contexts of palliative care in residential aged care facilities, including the impact of complex, co-morbid illnesses with unpredictable trajectories; shorter, more dependent inpatient stays; and an evolving accreditation process.
Towards a definition of death anxiety
Authors: Nyatanga Brian , de Vocht Hilde
Published: May 2014

There is currently no consensus about what the notion of death anxiety means. This commentary explores the complexity of death anxiety, asserts the distinction between anxiety and fear, and attempts a definition that encompasses the many facets associated with the term.
Sleep disturbance in family caregivers of patients with advanced cancer
Authors: Hearson Brenda , McClement Susan
Published: May 2014

Sleep is a complex process known to be essential for health, wellbeing, and optimal physical and psychological functioning. Therefore, sleep disturbance may lead to serious consequences. Advanced cancer patients are known to experience a complex constellation of symptoms requiring round-the-clock care. This reality, coupled with the current demographic, social, economic and health policy trends which are shifting palliative care from the hospital to the community setting, will see family members increasingly assuming responsibility for the provision of this care at home. Despite the positive aspects of caregiving, studies report that families experience stress and exhaustion. Given that patient and family constitute the unit of care in palliative care, this area warrants our attention. This article reviews the literature related to family caregivers’ disturbed sleep while caring for someone with advanced cancer. What is known and directions for future research will be addressed.
Introducing guided group reflective practice in an Irish palliative care unit
Authors: Bailey Maria E , Graham Margaret M
Published: May 2014

This paper describes the processes involved over one year in introducing, facilitating and evaluating a project of guided reflective practice for a group of eight palliative care nurses in Milford Care Centre, Republic of Ireland. While literature has tended to concentrate on critical discussion relating to reflection, less attention has been directed towards the organisation and facilitation of reflective processes in practice. In addressing this deficit, a detailed account of the collaborative processes and challenges involved in this project are presented. Group evaluation of the project is discussed under the following themes: understanding the process of reflective practice; the value of keeping a reflective diary; guided group reflection and moving forward. The introduction of guided reflection for palliative care nurses has afforded both the facilitators and the participants an opportunity to meet away from the clinical environment, and to work together, finding fresh insights to inform practice. The valuing and promotion of reflective processes by an organisation arguably provides a fundamental strategy to support nurses in a quality palliative care setting.
Time to summon the pioneering spirit
Authors: Holmes Kerry
Published: May 2014

We tend to measure the status of a profession by the amount and level of qualifications held by those who practice it. In the UK nursing is now an established academic discipline with undergraduate degree courses and postgraduate study offered by most universities. The job has risen in everyone’s estimation. The option for nurses to train to prescribe certain drugs has been available here for a decade and since last spring experienced and qualified nurses may prescribe (within their competence) any non-controlled drug in the British National Formulary. This is part of a general shift in nursing practice towards encompassing more ‘medical’ aspects of care.
Neonatal care: online information and resources
Authors: Smyth Dion
Published: May 2014

Progress in the medical management and supportive care of neonates has seen a rise in the availability and application of intensive and invasive life-sustaining technological treatments; however, the associated legal, ethical and emotional consequences of such treatment decisions can be a cause of considerable personal and professional distress. This month’s Web Words examines further the discussion about this matter as found on the internet.
Nutrition in palliative care: online information and resources
Authors: Smyth Dion
Published: May 2014

Following revelations that almost 40% of hospital patients are at risk of malnutrition and the total annual cost to the country of treating this condition is over £7 billion, recent guidelines from the UK National Institute for Health and Clinical Excellence (NICE) suggest that all hospital patients should be routinely screened for malnutrition and offered specialist support. Patients with cancer may be at an increased risk because of the peculiarities of the disease process, and suffer additional serious effects such as reduced response to treatments. It has also been estimated that 20% of all cancer deaths could be attributed to malnourishment. This month’s Web Words looks at aspects of nutritional assessment and how this feature of care could be enhanced.
The challenge of providing palliative care in the nursing home
Authors: Wowchuk Suzanne M , McClement Susan , Bond Jr John
Published: May 2014

Nursing homes are increasingly becoming the place of care and site of death for growing numbers of frail older people dying of chronic progressive illnesses. Despite this increase, empirical evidence suggests that providing palliative care in nursing homes is replete with challenges. In a previous publication, the authors examined challenges external to the nursing home that influence the provision of palliative care, and which may be beyond the nursing home’s control (Wowchuk et al, 2006). This paper reviews the primary internal factors identified in the literature that affect the provision of palliative care and are, to some extent, under the nursing home’s control. The internal factors include: i) lack of care provider knowledge about the principles and practices of palliative care; ii) care provider attitudes and beliefs about death and dying; iii) staffing levels and lack of available time for dying residents; iv) lack of physician support; v) lack of privacy for residents and families; vi) families’ expectations regarding residents’ care; vii) hospitalisation of dying residents. Suggestions for practice, education and research are provided.
Crossing over: transforming palliative care nursing services
Authors: Murray Mary Ann
Published: May 2014

Over the next decades, as the baby boomers age, there will be a considerable demand and need for ‘end-of-life care’. At the same time, there are numerous efforts to reform health care systems with a growing emphasis on evidence-based and patient-centred care. The current dominant model of palliative nursing is not sufficient. A model of palliative care nursing service delivery nested with a chronic condition management model epitomised by collaboration, communication and values-sensitive decision support is proposed. Multiple antecedents impacting palliative care delivery for the future are explored. A description of how the conceptual framework could be used to guide implementation and evaluation of nursing services is included. Specific implications for planning and outcomes measurement are discussed.
I can not get a breath: experiences of living with advanced chronic obstructive pulmonary disease
Authors: Hasson F , Spence A , Waldron M , Kernohan G , McLaughlin D , Watson B , Cochrane B
Published: May 2014

This study aims to explore the potential for palliative care among people living with advanced chronic obstructive pulmonary disease (COPD). Individual semi-structured interviews (n=13) were conducted with people who had a diagnosis of advanced COPD and were on optimal tolerated drug therapy, with their breathing volume (forced expiratory volume at less than 30%) or were on long-term oxygen therapy or non-invasion ventilation. Participants raised concerns about the uncertain trajectory of the illness and reported unmet palliative care needs with poor access to palliative care services. For most people, palliative care was associated with end of life; therefore, they were unwilling to discuss the issue. There was a wide acceptance that, medically, nothing more could be done. Findings also suggest that patients had unmet palliative care needs, requiring information and support. The research suggests the need for palliative care to be extended to all (regardless of diagnosis), with packages of care developed to target specific needs.
Continuing bonds: a human response within paediatric palliative care
Authors: Foster Terrah L , Gilmer Mary Jo
Published: May 2014

The concept of continuing bonds (CB) is a human response to health and illness within paediatric palliative care. This literature review aims to: define and explain the significance of CB; describe the history of the concept; critically analyze the literature related to CB; and make recommendations for future research.

Exploration of CB as a response to life-threatening illness and to losing a child is significant in terms of improving care for children and their families living with life-threatening illness. This paper focuses on children with a life-threatening illness, but CB also needs to be studied with other populations, such as those with life-limiting conditions.
Chinese culture: online information and resources
Authors: Smyth Dion
Published: May 2014

In the last edition of IJPN the idea and belief of marking the New Year was discussed. This, of course, neglected to notice the fact that one fifth of the world’s population, the Chinese, commemorate and celebrate their New Year this month. The Chinese community is now a familiar feature of many, if not most, Western towns, with Chinatowns being one example of how the immigrant and consolidated Chinese population have contributed to the vibrant and vital life of a city and society. This, of course, means that members of this discrete social and cultural group are increasingly presenting to palliative care practitioners. This month’s Web Words examines material that helps to inform practitioners about China and its people.
The role of palliative day care in supporting patients: a therapeutic community space
Authors: Fisher Colleen , O’Connor Moira , Abel Kaye
Published: May 2014

The work of palliative day care extends the philosophy and practice of palliative care to patients in the community. It supports the needs of patients who have a diminished ability to fulfil their family and societal roles. The extent to which these aims reflect current practice, however, has not been fully assessed, particularly in Australia. There is also a lack of research on patients’ experiences of palliative day care. The key aim of this study was, therefore, to explore patients’ experiences of palliative day care in a Western Australian context. Eight patients (two males and six females) with ages ranging from 44 to 82 years were interviewed. Four broad themes emerged from the data, related to patients’ experiences: being bounded physically; temporally; and socially; and the role of palliative day care in supporting patients. This study highlighted the potential for palliative day care to provide a therapeutic community space. Implications of these findings for palliative day care are discussed.
Student nurses’ attitudes towards death and dying in south-east Iran
Authors: Iranmanesh Sedigheh , Savenstedt Stefan , Abbaszadeh Abbas
Published: May 2014

In this study, the attitudes of student nurses from Kerman and Bam in Iran towards death and caring for dying patients were compared. Two types of questionnaire were used: the DAP-R (Death Attitude Profile Revised) and FATCOD (Frommelt Attitude Towards Caring for Dying patients). The Bam student nurses, who had more experience of death due to the Bam earthquake in December 2003, were found to be less afraid of death and also less likely to give care to people at the end of life compared to their counterparts in Kerman. In both groups, those who were educated about death and dying had more positive attitudes towards caring for people who are dying than non-educated participants. The study suggests that adding palliative care education, accompanied by a reflective narrative approach, to the nursing curriculum is necessary to improve quality of care at the end of life.
Religious beliefs: online information and resources
Authors: Smyth Dion
Published: May 2014

This month celebrates significant events for three world faiths with a smaller congregation and community than many of the other belief systems thus far featured in Web Words; however, the migration and missionary work of the various adherents to the dogma and doctrines of these credo mean that many of us will care for, or come into contact with them. A basic knowledge of the belief may therefore be useful for our understanding of the patient’s particular needs.
Religious beliefs: online information and resources
Authors: Smyth Dion
Published: May 2014

There are approximately 200 million adherents to the Christian theology, tradition and worship defined as ‘orthodox’, as opposed to Roman Catholic or Protestant. A Church and tradition that originated in the Eastern Roman empire and was subsequently shaped by the geography, politics, peoples, cultures and events associated with that area is now spread throughout the world with members in most major countries and provides a distinct life and worship for its followers.
Nurses’ decision-making in pressure area management in the last 48 hours of life
Authors: Searle Christina , McInerney Fran
Published: May 2014

Aim: To report on an aspect of a study that explored nurses’ clinical decision-making in pressure area management of people in the last 48 hours of life.

Design: A qualitative approach of interpretive description was used to collect and analyse 12 semi-structured interviews with registered nurses working in a palliative care unit and two haematology/oncology wards.

Findings: In this study nurses described their experiences of providing pressure care management for the patient in the last 48 hours of life. Nurses experienced difficulties with determining the frequency of turning the patient, especially during the last phase of life. Factors such as clinical assessment of the patient, ensuring patient comfort, use of pressure relieving aids, patient and family wishes and the influence of professional colleagues were variously valued and prioritised in importance. The context of care informed clinical practice and complicated decisions, which went beyond the consideration of clinical needs.

Conclusion: Nurses need to strive for consensus in clinical practice on the best care for the patient and, where possible, include the patient and family in the discussions. The development of further evidence on the options available for pressure management practices at the end of life can assist in clinical decision-making.
Welcoming the development of an end-of-life e-learning initiative
Authors: Costello John
Published: May 2014

One of the most significant outcomes to emerge from the End of Life Care Strategy (Department of Health [DH], 2008) has been the DH’s commissioning of an e-learning educational programme which focuses on end-of-life care. Online learning for health care has been provided by the DH for some time (see www.e-lfh.org.uk), and a specific focus on end-of-life care represents a significant and welcome innovation. The development of online end-of-life care is a collaboration between the DH, the E-Learning for Healthcare (E-LfH) team and the DH’s National End of Life Care Programme.
Listening to that still small voice
Authors: Larkin Philip
Published: May 2014

Earlier this year I was fortunate to visit South Africa to experience the challenges and triumphs of providing hospice and palliative care in a complex care environment. I had the opportunity to visit patients being cared for by highly experienced and motivated palliative care nurses in their own homes in the townships of Soweto and Mamelodi. It would not be an understatement to say that these nurses worked tirelessly, often with limited material resources, to be a voice for those in real need.
Understanding lymphoedema in advanced disease in a palliative care setting
Authors: Todd Marie
Published: May 2014

Lymphoedema in the palliative patient can be very distressing and uncomfortable, and managing this symptom is often difficult and labour intensive. Using a humanistic approach, the practitioner can holistically and sensitively assess the patient’s needs and problems and develop a management strategy that ensures these needs are addressed. This requires a high level of skill in assessment, communication, collaborative working, and symptom management. The four basic principles of lymphoedema management are compression, massage, skin care and exercise. These principles are modified and applied on an individual patient basis through the support and collaboration of the team involved in each patient’s care.
Lest we forget: podcasts about remembrance
Authors: Smyth Dion
Published: May 2014

This month’s editorial concentrates on the theme of remembrance, and especially the recollection of sacrifices made during wartime. Although this may not seem an undemanding match for a journal concerned with the provision and principles of palliative care, the themes addressed during this period and process of commemoration share commonalities, such as loss and grief, hope and humanity. So with little more excuse or explanation at this time in our calendar, lest we forget what generations before us relinquished, Web Words also looks at podcasts that feature stories from the digital archive about this theme.
Out of pocket
Authors: Black Peter
Published: May 2014

Note to self: a reduction of a country’s gross domestic product (GDP) for at least two consecutive quarters, normally visible in decreases in real GDP growth, personal income, employment, industrial production, and wholesale and retail sales, equals recession.
Crossing the divide
Authors: Black Peter
Published: May 2014

The most challenging aspect of writing an editorial for an international audience is offering an opinion that will hold relevance to all. With International Nurses’ Day (IND) looming (12 May 2009), this seemed like an ideal starting point. Delving deeper into the history behind IND, I realized that it was cloaked in controversy. It is celebrated around the world on 12 May, as that is the anniversary of Florence Nightingale – considered widely as the founder of modern nursing. However, it seems that frustration grew with having Florence Nightingale as a role model; being white, middle class and Protestant were not in keeping with the multicultural nature of modern nursing. So, for example, public sector union, Unison, voted to ask nursing’s international body to move the day from Florence Nightingale’s birthday to another date. Unison suggested the day be celebrated on 21 May, the birthday of Elizabeth Fry who founded the Institution of Nursing Sisters several years before Ms Nightingale set up her own nursing team.
Harnessing nurses’ passion
Authors: Howell Doris
Published: May 2014

Nurses are touching the lives of individuals who face advanced, progressive diseases and their families in many non-traditional palliative healthcare settings. In recent focus groups and a survey of nurses across a region in Canada, we were struck by the reach of nurses in caring for palliative populations in many diverse care settings. I would like to share some of the nurse participants’ stories with you.
Setting up a support group for children and their well carers who have a significant adult with a life-threatening illness
Authors: Popplestone-Helm Sarah Victoria , Helm David Peter
Published: May 2014

St Richard’s Hospice provides care and support for adults with a life-threatening illness and their families. Children and adolescents who are facing the loss of a significant adult are often encountered as part of its work. Whereas in the past children and young people have been supported primarily through one-to-one interactions after the adult has died, the expansion of the hospice’s facilities has recently enabled it to provide an increasing amount of pre-death support, including the launch of a pre-death child and family support group. This article reflects on the benefits and challenges of setting up and running such a group and the journey the hospice has gone through so far. It is hoped that by sharing experiences, some of the benefits of group work for children and adolescents facing the loss of a significant adult can be demonstrated, and that others in the worldwide palliative care community who are considering running or are already providing such a service will be encouraged.
Use of an adapted problem-based learning approach to aid the development of clinical audit skills in a palliative care setting
Authors: Lawton Sally , Collie Justine , Bird Jaki , Macfarlane Wilma , Milne Cath , Paul Michelle , Peace Shona
Published: May 2014

Aim: To share the experiences of an adapted problem-based learning approach to audit within a palliative care setting. Method: A small group learning approach to design and undertake an audit. Result: This approach was a positive learning experience within clinical practice that enabled the group to develop their knowledge of audit planning, design, analysis and reporting as well as their problem-solving, written and communication skills. Conclusion: The facilitated group approach promoted shared learning, problem solving and the opportunity to develop audit skills within a supportive environment. Overall, this approach enabled the participants to gain confidence by engaging in learning within the work setting.
Developing meaningful learning experiences in palliative care nursing education
Authors: Brajtman Susan , Higuchi Kathryn , Murray Mary Ann
Published: May 2014

To help nurses develop effective clinical decision-making skills, it is essential that palliative care education includes opportunities for undergraduate and practicing nurses to develop cognitive skills in addressing real-life clinical problems. This article describes the learning experiences within an elective nursing course designed to strengthen the clinical decision-making skills of students in the context of palliative care and interprofessional practice. A description of the course context, major learning assignment and evaluation rubic, and reflections on the learning process in terms of clinical decision-making and interprofessional practice provides an example of how meaningful learning opportunities can be used to prepare nurses for the challenges they will face as collaborative team members in their palliative clinical practice.
Podcasts with a difference: online information and resources
Authors: Smyth Dion
Published: May 2014

This month’s Web Words sees a continuation of the consideration of the utility of the university-led contribution to palliative care education and discussion.
Study skills
Authors: Smyth Dion
Published: May 2014

There are numerous reasons why palliative care practitioners continue education beyond their post-registration level of qualification. Intrinsic factors include personal interest in a topic, a motivation to keep the mind active, and a desire to improve professional practice. Extrinsic factors such as the perceived job opportunities or competition (particularly from the next generation) are also influential motivators, as are the supposed possible future financial gains and job security. Whatever the reason for further study, its success could depend on the development of skills that make it more effective and enjoyable. This month’s Web Words explore materials that assist the process of learning.
Maintaining hope when close to death: insight from cancer patients in palliative home care
Authors: Olsson Louise , Östlund Gunnel , Grassman Eva Jeppsson , Friedrichsen Maria , Strang Peter
Published: May 2014

Purpose

This article reports the social and psychological processes that 11 cancer patients receiving palliative home care used to keep their hope alive.

Method

The patients described their ways of dealing with hope in interviews and diaries, and it was from these accounts that the processes were extracted, using a grounded theory methodology.

Results

Two main processes emerged: maintaining life and preparing for death. When the patients focused on maintaining life, they tried to preserve its meaning and to communicate with others about life and death. They found it helpful to shift their focus and to involve fellow ‘travellers’ in their journey. To prepare for death was to take responsibility for the future and to see possibilities of living on even after death.

Conclusion

This paper revealed two parallel and interdependent processes used by patients in the palliative care phase to maintain hope and respond to living close to death.
Caring for a patient with a fungating malignant lesion in a hospice setting: reflecting on practice
Authors: Hawthorn Maureen
Published: May 2014

This article attempts to demonstrate the process of using experiential learning to reflect on nursing practice. This will be discussed in relation to the Atkins and Murphy’s model of reflection. A case study will be used to demonstrate the complex issues of symptom management and the implications for improving and maintaining a consistent quality of holistic care within a hospice. The case of ‘Sylvia’, a 68-year-old woman with a diagnosis of incurable cancer, will be discussed in relation to the management of a fungating malignant lesion, pain management, the control of malodour, and maintaining dignified and respectful care and optimizing self-esteem and quality of life.
Clinical competence in palliative nursing in Norway: the importance of good care routines
Authors: Slåtten Kari , Fagerström Lisbeth , Hatlevik Ove Edvard
Published: May 2014

Aim: This paper examines how clinical nurse specialists assessed their competences in relief of symptoms, and explores factors affecting good care routines in palliative care. Methods: A prospective survey among 235 former post-bachelor (response rate 50.6 %) students at two university colleges in Norway. Results: Correlations between the measured concepts showed a medium to high correlation between all five competences. Use of care routines correlated with all the other factors. The ability to identify lack of care showed significant correlation with one concept: time available for nursing. The results from the regression analysis supported a model with good care routines as a dependent variable (F=22.59, df=91, P<0.001). The independent variables in the model explained almost 57% of the variance in using care routines. Competences dealing with mouth problems, nausea, anxiety and the use of the Edmonton symptom assessment system (ESAS) had a positive effect on care routines. On the other hand, the ability to identify lack of care had a significant negative effect on the use of care routines. Conclusions: The importance of systematic assessment of the palliative patient`s care needs and symptom management are emphasized, and use of the ESAS, and good care routines was affected by post-bachelor competences.
Improving palliative care for people with long-term neurological conditions
Authors: McClinton Pam
Published: May 2014

With over 10 million people currently living with a neurological condition in the UK, and 600 000 people newly diagnosed each year (Neurological Alliance, 2006), access to quality end-of-life care for people living with conditions including Parkinson’s disease, Huntington’s disease and motor neurone disease, is essential.