bluuebunny/crossref_metadata_2025 huggingface dataset:
A small observational study of the longevity of syringe driver sites in palliative care
Authors: Morgan Sue , Evans Nici
Published: May 2014

Although the use of portable syringe drivers is common in palliative care, problems do occur. A small observational study of local practice was undertaken to establish the rate of syringe driver reactions and duration of sites; to determine whether a predictable relationship existed between the number of days on a syringe driver and the number of sites used consecutively; and to discover whether the location of a syringe driver site influenced the site longevity. Eighty-six syringe driver sites were established in 27 patients during the 3-month study period. Site duration ranged between 1 hour and 9 days (mean 2 days). An association was found between the number of days on a syringe driver and the number of sites used. However, this relationship is not close enough to predict when a site may be discontinued. Thirty-eight syringe drivers (44%) were discontinued because of site reactions. The location of a syringe driver site appeared to be an important factor influencing the site longevity, with cannula dislodgment three times more prevalent from the chest wall than the upper arm (P=0.05). However, the findings suggest that if it is possible to prevent dislodgment from the chest wall, then this site can be used for significantly longer before a site reaction develops (P=0.02). In view of the unpredictability of site reactions, it is concluded that sites must be assessed regularly and changed as soon as problems develop. As this was a small study in one unit without standardization of site reaction assessment, the results should be interpreted with caution. However, given the lack of published work in this area, this study contributes to the evidence base and raises important questions for both clinical practice and future research.
Grief in North America, a death-denying society
Authors: Johnson Kay
Published: May 2014

In North America, death and grief are not spoken about readily or easily. In many families, children observe three important, albeit flawed, life lessons: do not talk about death or acknowledge grief; be strong and put on a smile no matter what; and get over it and move on as fast as possible when someone dies. A powerful contributor to this death-denying phenomenon is the media. Not only does it publish the most appealing, dramatic details about a death, but it also focuses its advertising avalanche on being and staying young. By denying realistic end-of-life smells, sounds and physical changes, and the inevitability of ageing, the death experience is promoted as an unfortunate but temporary event that can be dealt with by using the right mouthwash or hair dye.
Poverty and palliative care in the US: issues facing the urban poor
Authors: Hughes Anne
Published: May 2014

Poverty is a significant public health and social problem in the US. The urban poor living with life-limiting illnesses are a particularly vulnerable population. The literature related to the experiences of the urban poor at the end of life is sparse. Most relates to the experiences of patients with cancer. The purpose of this literature review is to describe the problem of poverty in the US, to identify challenges in providing palliative care to the urban poor, and lastly, to articulate implications for nursing practice and nursing research.
The experience of suffering as lived by women with breast cancer
Authors: Perreault Annie , Bourbonnais Frances Fothergill
Published: May 2014

Background The advances in screening and treatment technologies for breast cancer allow many women to survive. However, their experience of suffering through out this illness journey is not understood totally.

Aim To explore the experience of suffering as lived by women with breast cancer.

Design A qualitative inquiry based on Heidegger’s phenomenological approach was used to collect, code and analyse the data. Open-ended questions were asked to six women during an individual interview to allow the participants to voice their lived experiences.

Results The voicing of their stories revealed a process of transformation as a response to the suffering experienced. The descriptions were deeply spiritual and connected to nature. The self-descriptions of their lived experience led to the construction of the Five Seasons of the Tree of Life.

Conclusion Nurses need to be cognizant of the multidimensionality of suffering so that interventions can be developed.
The Liverpool Care Pathway (LCP) influencing the UK national agenda on care of the dying
Authors: Ellershaw John E , Murphy Deborah
Published: May 2014

Palliative care has been one of the great success stories within the health-care system in the UK over the past 40 years. It evolved in the environment of a dominating cure model and has directly influenced the adjustment of the system towards a caring model. Its influence has been widespread and it has developed into a recognized speciality with a substantial body of knowledge underpinning it (Doyle et al, 2005). It has had considerable impact on the undergraduate and postgraduate teaching of health-care professionals (Field and Wee, 2002) and permeates the National Service Frameworks for chronic diseases as an integrated part of healthcare for cancer (Department of Health (DoH), 2000a) and non-cancer patients (DoH, 2000b, 2005).
The art of healing and knowing in cancer and palliative care
Authors: Devlin Briege
Published: May 2014

This article examines the role of artwork in cancer and palliative care. The literature review focuses on both children and adults. One case scenario focuses on a child’s reaction to his mother’s illness showing his distress through painting. Artwork from children are included in the text to help demonstrate some feelings and reactions to illness. Some themes, which emerged from examination of the artwork, were isolation, anger, and lack of hope. Carers became overtly aware of the distress people were experiencing through artwork. Art depicted graphically what people were feeling and can, therefore, be considered a valuable tool in the communication process. It is useful especially when individuals are unable to express their feelings verbally. Recommendations focus on how artwork may be implemented in hospice and hospital settings and on how the environment may be made safe psychologically. The importance of the art process rather than on artistic skill is discussed. The potential for developing creativity at the end of life, when self-esteem may be low is explored.
Introduction of a pain scale for palliative care patients with cognitive impairment
Authors: van Iersel Trudie , Timmerman Denise , Mullie Arsene
Published: May 2014

Aim: To describe the development and introduction of a pain scale for patients with cognitive impairment who are admitted to homes for older people and nursing homes in the region of northwest Flanders in Belgium.

Design: A questionnaire comparing the Abbey and Pain Assessment in Advanced Dementia (PAINAD) scales was distributed in 17 homes; 185 care providers participated, evaluating 157 patients.

Findings: Approximately half of the care providers evaluated both scales as being good measures of pain and easy to use. Of the different items scored in both scales, care providers agreed upon three indicators as being most valuable to use for measuring pain: facial expression; vocalization; and body language.

Conclusion: The findings were not conclusive for the introduction of either Abbey or PAINAD. Based on the results, a simplified pain observation scale consisting of three items was developed. It has been introduced in the homes of the region and is being tested currently.
Advance care planning for patients with inoperable lung cancer
Authors: Horne Gillian , Seymour Jane , Shepherd Karen
Published: May 2014

Aim To develop and pilot an advance care planning (ACP) intervention for lung cancer nurses to use in discussing end-of-life preferences and choices for care with patients diagnosed with inoperable lung cancer.

Design A prospective qualitative design with semistructured individual patient interviews. A grounded theory approach was used for the analysis.

Sample Fifteen patients took part in ACP discussions with their nurse and nine agreed to be interviewed by a researcher about their perceptions of the intervention.

Results Patients’ reactions to the ACP process varied, but they welcomed the recording of their wishes and appreciated the courage of the nurses in bringing up the subject of future care.

Conclusion This study explored the role of ACP as a method of enabling patient choice for lung cancer patients in the UK. Further research is needed to determine the components of ACP and the training needs of staff.
Ways of relating to death: views of older people resident in nursing homes
Authors: Ternestedt Britt-Marie , Franklin Lise-Lotte
Published: May 2014

Few studies shed light on what older people themselves consider a good or dignified death. This study is part of a larger project where interviews were used to follow 12 nursing home residents over time. The aim of the present study was to reach a deeper understanding of seven older people’s thoughts, feelings and attitudes towards death. The participants were interviewed on four occasions across 18–24 months, and the interviews were analysed using a hermeneutic method. The findings revealed three main themes: 1. Zest for life, 2. Indifferent attitude, 3. Longing for death. The themes mirror the complexity of what ageing and nearing the end of life can mean. A strong desire among the participants was to be more involved in their own personal care and in everyday life at the nursing home. Person-oriented care based on the philosophy of palliative care, and including conversation as a natural component, might promote the older person’s possibilities to obtain a good death.
Truth telling in palliative care nursing: the dilemmas of collusion
Authors: Vivian Rachael
Published: May 2014

Most patients diagnosed with a life threatening illness want to know the truth regarding their situation to enable them to plan their remaining time their family’s future (Fallowfield 2002). In palliative care practice dilemmas and conflicts about truth-telling may involve collusion between health care professionals and the patients’ relatives to withhold the truth from the patient. This article discusses the ethical theory and legal considerations pertaining to truth-telling and collusion in the UK. It focuses on situations where the adult patient is deemed to be competent and extends arguments about collusion beyond ethical theoretical perspectives and legal considerations to include the emotional and practical consequences of withholding the truth. A case study serves to highlight the complex interplay between these aspects and the author argues that they must all be taken into account when making decisions about truth-telling. The potential role of the nurse within the context of truth-telling and the avoidance of the pitfalls of collusion are considered.
Adult bereavement in five English hospices: types of support
Authors: Reid David , Field David , Payne Sheila , Relf Marilyn
Published: May 2014

Method: In-depth organisational case studies of five English hospices.

Analysis: Thematic analysis of qualitative interviews and focus groups and scrutiny of documentary material provided by the hospice bereavement services.

Findings: All of the hospices ran events where bereaved people met with other bereaved people who had been in contact with the hospice. They all offered some form of more intensive one-to-one support, spiritual support, and ran remembrance events. Three types of one-to-one support were offered:

Counselling Befriending Support from paid bereavement staff.

Ongoing telephone support from trained bereavement volunteers appeared to be an acceptable and cost-effective way of providing low intensity bereavement support. Running social bereavement support groups is difficult and resource intensive. ‘Drop-in’ events appear to perform a useful role for both bereaved people and bereavement services. There seemed to be no readily available sources of support for people with particularly complex bereavement problems.

Conclusions: All of the hospices were offering appropriate types of bereavement support that clearly met Components 1 and 2 of bereavement support in the NICE guidance. In the absence of any agreement about ‘best practice’ for adult bereavement support services it is the integration of bereavement support as a central aspect of hospice activity that is most likely to improve bereavement support for adults in the future.
Factors influencing completion of advanced directives in hospitalized patients
Authors: Duke Gloria , Thompson Sue , Hastie Mariane
Published: May 2014

Aim: A cross-sectional, descriptive study to describe characteristics and other factors that influenced the decision by hospitalized patients in the East Texas area to formulate an advanced directive (AD).

Findings: Spouses, family members and sense of spirituality were the strongest influential factors for completion of an AD. Most learned about ADs from family, friends, personal attorneys, and others, while less than a quarter of the sample learned about ADs from health care providers. Not wanting to be a burden on their family was the major reason cited for completing an AD.

Conclusions: Health care provider roles are vague in terms of responsibility for AD discussion and education. Further exploration of the attitudes, knowledge and practices concerning ADs of nurses and primary health care providers is recommended to provide focal points for future research in order to facilitate peace of mind for patients and families at end-of-life.
Bridging the gap: can a link nurse initiative influence palliative care in an acute hospital?
Authors: Cotterell Phil , Lynch Carmel , Peters Debbie
Published: May 2014

With 90% of people needing some inpatient hospital care in the final year of life, it is evident that the provision and awareness of palliative care, and education surrounding this, are widely needed. This study aims to evaluate a palliative care link nurse initiative (PCLN) in an NHS acute hospital, identifying key factors affecting link nurses’ ability to influence palliative care practice. This qualitative study used semi-structured interviews and a focus group to show the anticipated and actual influence of link nurses on practice. Findings suggest that link nurses had increased knowledge and skills in palliative care due to education provided. Link nurses were seen to have an influence on the presence and quality of palliative care practice in hospital wards. Factors that could help link nurses to have greater influence are reported, as are difficulties in providing care and accessing training.
A support group programme for relatives during the late palliative phase
Authors: Henriksson Anette , Andershed Birgitta
Published: May 2014

This study describes an intervention where relatives were invited to take part in a support group programme during the late palliative phase of their family member. The purpose was to describe their experiences of the support group programme and the subsequent impact on their lives as relatives of a terminally ill person. Qualitative interviews were chosen as the data collection method. The analysis was inspired by the phenomenological method as described by Giorgi (1989). The relatives’ experiences were categorised into six key constituents: confirmation; insight into the gravity of the illness; sense of belonging created by similar experiences; participation in the care system; being able to rest; and strength to provide support for the patient. These six constituents resulted in a sense of safety in relation to the patient, the illness, the nursing staff and the care unit. The study’s findings show that interventions of this kind may be integral to the relatives’ ability to handle their situation when caring for a terminally ill family member.
A locally produced nutritional supplement in community based HIV and AIDS patients
Authors: Oguntibeju Oluwafemi , Jacoba van den Heever Wilhelmina Maria , Van Schalkwyk Frances Elizabeth
Published: May 2014

This study examined the potential effect of a nutritional supplement on the anthropometric profiles (body measurements such as body mass index [BMI], fat percentage and waist-hip ratio) of HIVpositive/ AIDS patients and the correlation between anthropometric profile, CD4+T cell count and viral load. At baseline, of the 35 patients recruited into the study, 32 (94.1%) showed a fat percentage below normal range. Twenty-four of the patients (68.6%) had a BMI within normal range, while a greater percentage of the patients had a normal waist-hip ratio. Of the 28 patients that completed the study, 26 (96.3%) reported a fat percentage of below 18.5%. The results showed that 19 (67.9%) of the 28 patients had a BMI within the normal range after nutrient intervention. There was a significant positive correlation between the BMI and fat percentage. At the end of the study the CD4+T cell count showed no correlation with any of the anthropometric indices while the viral load showed a significant negative correlation with the lean body mass and BMI. The short duration of the study probably limited the positive trend of the supplement.
Providing direction for change: assessing Canadian nursing students learning needs
Authors: Brajtman Susan , Fothergill-Bourbonnais Frances , Casey Alberta , Alain Diane , Fiset Valerie
Published: May 2014

Aim: To examine the current curriculum content and learning needs of graduating nursing students related to end-of-life care (EOLC).

Design: A survey method was employed.

Sample: A purposive sample of 58 Anglophone and Francophone students completed the Palliative Care Quiz for Nursing (PCQN) and Frommelt’s Attitudes Toward Care of the Dying Scale (FATCOD). Students responded to open-ended questions regarding perceptions of preparedness to care for terminally ill patients, and provided suggestions for changes to the curriculum. Key informant educators identified opportunities to include EOLC content in courses and clinical placements.

Results: Results indicated that students held positive attitudes towards caring for dying patients, had modest knowledge levels, and that one third did not feel adequately prepared to care for dying patients. Although EOLC education tends to be threaded throughout the program, the emphasis is dependent upon the commitment of individual professors and clinical instructors with experience and/or expertise in this area.

Conclusion: Students and educators agreed more emphasis on EOLC was needed. Recommendations include development of teaching strategies and experiential learning in EOLC throughout the curriculum.
Moral distress and providing care to dying babies in neonatal nursing
Authors: Kain Victoria J
Published: May 2014

Moral distress in nursing is a prevalent theme in the literature. Although this issue has been investigated in other nursing disciplines, it has not been investigated by empirical research in the emotionally and ethically sensitive area of providing care to dying babies. Moral distress occurs when nurses are prevented from translating moral choices into moral action. The response to moral distress is anger, resentment, guilt, frustration, sorrow and powerlessness. If not addressed, self-worth may be jeopardised, affecting personal and professional relationships.

A review of the literature was conducted to explore moral distress in neonatal nursing when providing care to dying babies. This literature review provides a basis for the direction of further research and hypothesis testing. Further focused research is necessary in this under-theorised area of nursing practice to clarify the significance of moral distress for neonatal nurses caring for dying babies.
Caring for patients dying at home frm heart failure: a new way of working
Authors: Pooler Jacqueline , Yates Anne , Ellison Sarah
Published: May 2014

This article explores the difficult journey that heart failure patients frequently experience when trying to access palliative care. It describes how a team of Macmillan and heart failure nurse specialists attempted to address the problem using the specialist role to effect change. Individual and group learning needs were identified and addressed while the use of reflective practice and group working helped the nurses to manage and implement change. This project, with management support, empowered the specialist teams to think creatively about nursing practice and improve patient care. It has encouraged working with clinical nurse specialists from other disciplines, thus avoiding a narrowness of outlook. Although this project initially focused on a small number of patients, it has enabled the teams to become established in partnership working; the collaborative approach to providing palliative care for end-stage cardiac failure patients has since continued to grow and flourish. It is hoped that, in the future, further studies can take place to gain more detailed information from patients and their families about how partnership working can continue to meet the needs of this group.
Macmillan nurse facilitators for palliative care: evaluation of
Authors: Moriarty Deirdre , O’Hara Annette , Byron Shirley
Published: May 2014

Aim: To describe and evaluate the implementation of two Macmillan nurse facilitator posts.

Method: A case study design was adopted with data collection in two main phases. A range of data collection techniques were used, including interview, questionnaire and observation. Various sampling strategies were adopted for the different data collection methods. The use of multiple sources of data supported the triangulation of evidence in order to increase the strength and rigour of the analysis.

Findings: Two Macmillan nurse facilitator posts were set up with the overall aims of enhancing the quality of palliative care to patients in the community by mobilising the existing skills and supporting the development of new competencies by community nurses. The Macmillan nurse facilitators have been active in three areas directly linked to community nurses’ clinical practice: educational programmes, establishment of a palliative resource nurse network and support of clinical guidelines in nursing and primary care teams. The model of peer facilitation whereby the Macmillan nurse facilitators continue to work as district nurses for part of the week has been highly valued by community nurses.

Conclusions: The single most important factor identified in facilitating successful implementation of these posts has been the ‘dual role’ nature of the posts. This has been key to acceptance of the posts by a generic workforce. The posts provide an effective model for supporting and enhancing the palliative clinical skills and knowledge of generic community-based staff.
Shaping new thinking in palliative nursing
Authors: Larkin Philip
Published: May 2014

I have often wondered what is meant by the term ‘palliative care nursing’. I myself have always referred to ‘palliative nursing’ (without the need to add the word ‘care’). I think that this stems from a personal philosophy that nursing and caring are somewhat synonymous and therefore I am actually saying the same thing. On reflection, however, I think that it is increasingly important that the voice of nursing be clearly heard within the diverse and eclectic practice that has become palliative care in 2007. Beyond the arguments for and against specialisation and a perceived over-influence of biomedicine, the unique contribution of nursing may be at risk of being subsumed into a comfortable and vague description of multidisciplinary practice which leads to inarticulate misinterpretations of what palliative nurses do. All professionals involved in end-of-life care care, but only nurses nurse. And that is a fact that we should be proud of.
The development of core competencies for palliative care educators
Authors: Becker Robert
Published: May 2014

This article outlines the conceptual thinking and development of core competencies for a palliative care educator. It is suggested that the process of defining a common core of key skills, personal qualities and attributes that reflect the unique role of a palliative care educator can provide an indicator of the diversity and complexity of this role, which can be used by the educator and employer in job planning, review and professional development. It can also potentially inform pay remuneration that is commensurate with both experience and responsibilities. For employers there is the opportunity to use the core competencies in the appointment of suitably able educators above and beyond the requirements of a standard job description.
Diagnosis and management of neuropathic pain in palliative care
Authors: Callin Sarah , I Bennett Michael
Published: May 2014

Neuropathic pain can be distressing and difficult to treat, and remains a problem for a significant proportion of palliative care patients. This article considers the identification and assessment of neuropathic pain, and highlights some of the challenges specific to the palliative care population. Further discussion includes definitions, pathophysiology and implications for nursing practice.
Artificial hydration: the role of the nurse in addressing patient and family needs
Authors: Schmidlin Esther
Published: May 2014

When caring for terminally ill patients and their families, nurses are confronted with the subject of terminal dehydration and the question of artificial hydration at the end of life. Terminal dehydration and artificial hydration are still controversial topics of discussion and, to this day, data remain insufficient to reach a final conclusion on the benefits or harm of dehydration in terminally ill patients (Ersek, 2003; Fainsinger, 2008). Nurses, just like physicians, have different attitudes about the usefulness of artificial hydration. Personal and professional experiences, cultural influences, and the place of care, as well as education and available resources, are guiding clinical practice (Morita et al, 2002; Pasman et al, 2004). Since there is no ethically or medically based gold standard, each decision for or against hydration at the end of life needs to be taken on an individual basis.

This article reflects on the meaning of dehydration for the patient and their family, and reviews the role of the nurse within the decision-making process. Arguments for or against artificial hydration are illuminated through patient situations which took place in the clinical setting of a hospice. The article further highlights the importance of recognising dehydration in frail and elderly patients, and critically assesses policies that may hinder its optimal palliation in different settings in Switzerland.
Patient perspective: what do palliative care patients think about their care?
Authors: Conner Alison , Allport Sarah , Dixon Julie , Somerville Ann-Marie
Published: May 2014

Developing accountable and appropriate care services depends on listening to the views of service users. This nurse-led, qualitative study explored 10 palliative care patients’ views of their care in hospital and at home using non-standard interviews. A total of 10 categories emerged, some of which are not reflected well in extant literature. However, some smaller studies show comparable results, which confirms the validity of these findings. These findings can inform the planning of services and are repeatable and generalizable. Implications for nursing and planning for palliative care are discussed.
Bereaved parents’ experiences of the use of ‘cold bedrooms’ following the death of their child
Authors: Forrester Lynne
Published: May 2014

Introduction: Children’s hospices have the facilities to enable a child to remain at the hospice following their death until the time of the funeral if desired by the family. The use of cold bedrooms (or beds) to reduce the rate of the body’s physical deterioration enables the family to have unrestricted access and close proximity to the child throughout the 24-hour period. Aim: To explore how bereaved families experience the child remaining in a cold bedroom following the child’s death in the period January 2002–March 2005. Objective: To survey all the families whose child had been cared for in a cold bedroom in one children’s hospice in South-East England (n=34). Method: A retrospective cross-sectional survey using a postal questionnaire was conducted. Questionnaires were sent to the 31 bereaved families who were considered eligible for participation. Response: Sixteen completed questionnaires were returned (51.6%); four families declined participation (12.9%); eleven families did not reply (35.5%). Results: The experiences of sixteen families were obtained. The families expressed that they found the experience physically, practically and emotionally supportive, as they were able to continue to act as the child’s parents, to choose and control how their child’s care occurred, to say their farewells at their own pace and to plan the funeral of their choice. These results must be interpreted with the clear recognition that the experiences of 48.4% of the sample are unknown. Reasons for non-participation were explored. Conclusion: The study has methodological limitations but presents an investigation into the experiences of parents whose child has been cared for in a cold bedroom. These families all described the experience positively.
Electronic surveillance and tagging people with dementia
Authors: Hughes Rhidian
Published: May 2014

People with dementia can exhibit a complex array of emotional and behavioural problems, including persistent walking or ‘wandering’ (Hermans et al, 2007). The reasons why people persistently walk are complex, and can arise due to:
Living with terminal illness: patient and family experiences of hospital end-of-life care
Authors: Spichiger Elisabeth
Published: May 2014

Aim. The study explored terminally ill patients’ and their families’ experiences of hospital end-of-life care.

Design. A qualitative approach – interpretive phenomenology – was applied prospectively.

Sample and setting. Ten patients and their closest family members were recruited in one Swiss university hospital.

Methods. Data collection included repeated observations, conversations with patients, and interviews with family members.

Findings. People led unique lives; when a terminal illness intruded and during hospital stays, they continued to live their particular life. The hospital was experienced differently, as prison, heaven, or necessary sojourn. A caring stance of the professionals was crucial to patients’ and families’ sense of being well cared for. When care providers lacked skills or did not recognize patients and family members as persons, they suffered. In contrast, adequate care interventions improved their quality of life.

Conclusions. The experience of being in the hospital cannot be separated from patients’ and families’ life stories.
The grief experience of same-sex couples within an Irish context: tacit acknowledgement
Authors: Glackin Michelle , Higgins Agnes
Published: May 2014

This study sought to explore the grief experience of same sex couples. To date, the majority of research in this area has focused on the bereavement experience of individuals whose partner has died from an AIDS/HIV-related illness. The research design used was descriptive exploratory. A multi-pronged sampling strategy was employed to generate participants. Seven people underwent in-depth interviews once the study had received ethical approval. Data were analysed by coding, comparing, and merging codes into higher order themes. Five themes subsequently emerged that captured the essence of the bereavement experience, namely: ‘tacit acknowledgement’; ‘sculpting the distress’; ‘multiple losses’; ‘seeking support’; and ‘journeying anew.’ While not all bereaved gay or lesbian partners experience ‘disenfranchized grief’, particularly if their relationship with the deceased was not hidden, it is clear from the findings of this study that many of the participants did (Doka, 1989; Wallbank, 1998). Health care professionals need to consider their approach to people who identify themselves as gay or lesbian, if they are to provide support structures (formal and informal) to meet their unique needs.
Exploring the concepts behind truth-telling in palliative care
Authors: Shaw Susan
Published: May 2014

Truth is an enormously complex concept. For any person at any point in time, the truth is relative to their beliefs, perspective and context. This article explores some concepts relating to truth under three broad headings. First, the potentially competing truths that patients and professionals have, and the contexts in which they interact. Second, the ways in which culture, language and approaches to knowledge may construct truth. Finally, the concepts of ‘being with’ patients and spirituality are suggested as essential to working with patients as they navigate truth.
Perceptions of the use of a remote monitoring system in patients receiving palliative care at home
Authors: McCall Kathryn , Keen Jeremy , Farrer Keith , Maguire Roma , McCann Lisa , Johnston Bridget , McGill Maria , Sage Meurig , Kearney Nora
Published: May 2014

In remote communities, where frequent face-to-face contact with health professionals may be difficult, the ongoing review and management of symptoms – a fundamental part of good palliative care – can be difficult to achieve. Telecare and other developments in information technology are increasingly being sought as a means of addressing shifting population demographics and rising demands on stretched health services, and may help in providing a system which allows patients to report their symptoms as they are happening. This may be one way of enhancing symptom management and improving quality of care at the end of life.

A study testing the feasibility of using mobile phone-based technology (Advanced Symptom Management System in Palliative Care (ASyMSp)) to monitor and manage symptoms reported by patients being cared for at home in the advanced stages of their illness was carried out in two rural communities in the north of Scotland. The results of this study show that the system was usable and acceptable to patients and the health professionals who cared for them.
Religious beliefs: online information and resources
Authors: Smyth Dion
Published: May 2014

Judaism is one of the oldest monotheistic religions with a history that extends back over 3 500 years and a heritage that has influenced the other major world religions of Christianity and Islam. Beginning with the covenant established between God and Abraham, Judaism is a religion based on the philosophy and doctrine of the Hebrew bible and the written record of rabbinic discourse on the faith that is the Talmud.
Creating a spiritual tapestry: nurses’ experiences of delivering spiritual care to patients in an Irish hospice
Authors: Bailey Maria E , Moran Sue , Graham Margaret M
Published: May 2014

This study aims to describe nurses’ experiences of delivering spiritual support in a palliative care setting in the Republic of Ireland. The authors conducted semi-structured interviews with 22 nurses working in the area of specialist palliative care. A content analysis of the transcriptions revealed five sub-themes: understanding spirituality; the art of nursing in spiritual care; education and learning; the challenge of spiritual caring; and the dimensions of time. The resulting creation of a spiritual tapestry provided an overall theme. Nurses in this study were spiritually self-aware and placed a high value on the spiritual element of their caring role. Nurses described their individual understanding of spirituality and discussed how they recognized and addressed a patient’s spiritual needs. Time was described as essential to the provision of spiritual support and appeared to be a significant resource challenge to the provision of spiritual care. The challenges of assessing spiritual needs and measuring outcomes of care were also reported. Participants in this study described the creation of a spiritual tapestry that ‘weaves’ together care and compassion with skills and knowledge in their nursing practice.
The prebereavement psychological needs of AIDS-affected adolescents in Uganda
Authors: Withell Bridget
Published: May 2014

Introduction: In Sub-Saharan Africa, adolescents who live with dying parents are recognized as vulnerable but research into their psychological needs is limited. Aim: A small qualitative retrospective study was undertaken in Uganda to gain insight into the prebereavement experiences of AIDS-affected adolescents. Method: Unstructured interviews with ten parentally-bereaved adolescents were conducted and recorded. Following transcription, the narrative data were thematically analysed. Findings: The adolescents’ level of awareness concerning the parent’s illness affected their psychological needs. Four variations of awareness were identified and then categorized as concealed reality, disguised reality, discerned reality and disclosed reality. Conclusion: Most adolescents discerned that their parent was dying as the illness advanced, but they remained psychologically isolated and unprepared. Disclosure is advocated but must include ongoing emotional support and future care arrangements.
Home away from home? A case study of bedside objects in a hospice
Authors: Kellehear Allan , Pugh Edwin , Atter Lynda
Published: May 2014

This is a descriptive case study employing a photographic survey of the numerous objects that patients and their social networks bring to a hospice setting. Photographs were taken of all objects kept by the bedside by 31 inpatients in a hospice in the UK county of Durham. These objects ranged from assorted food and drink, greetings cards and magazines, to more specific personal items such as family photos, children’s drawings, and religious icons. A total of 176 objects were analysed. There were two principle findings. First, patients appeared to bring objects to a hospice setting that reflected their desire to partially recreate their home settings or functions, however modestly. Second, despite a major diversity of objects, and the fact that most objects underlined desires for distraction, entertainment and social contact, almost every individual patient harboured at least one personally unique object. These two observations – creating some semblance of ‘home’ and the existence of uniqueness amid a plethora of expected patient paraphernalia – suggest important reconsideration of both hospice settings and the possibility of new ways to engage patients about meaning, illness and loss.
Podcasts by professional journals: online information and resources
Authors: Smyth Dion
Published: May 2014

As the popularity of portable audio devices such as the iPod increases, many periodicals are now supplementing their written format with recorded content by means of the medium of downloadable podcasts. This month’s Web words details some of the new ways that professionals can keep up to date with the news, views, information and research by looking at some of the more admired journals’ attempts at disseminating information via the web.
Euthanasia in Greece: Greek nurses’ involvement and beliefs
Authors: Patelarou Evridiki , Vardavas Constantine I , Fioraki Ioanna , Alegakis Thanasis , Dafermou Maria , Ntzilepi Penelope
Published: May 2014

Euthanasia has become a prominent social and ethical issue in which nurses play an important role. This study evaluated, for the first time in Greece, the acceptance and enactment of passive euthanasia among Greek nursing staff, measured in relation to the type of patients cared for. Passive euthanasia, illegal in Greece, is defined as either withdrawing or withholding life-sustaining treatment. Fifty-one per cent responded that they would not be willing to withhold life-sustaining treatment if legalized, while almost 30% responded that they had withheld lifesustaining treatment from a patient at least once in the past; specifically 47.7% of intensive care unit nurses (OR 8.2; 95% CI: 1.6-41.3), 20% of cancer ward nurses (OR 2.7; 95% CI: 0.5-15.6)] and 8.3% of other nurses from other wards (P = 0.001). Age, gender and self-reported levels of religiosity among Greek nurses were not found to affect statistically any variable regarding euthanasia and its enactment.
Experiences of 24-hour advice line services: A framework for good practice and meeting NICE guidelines
Authors: Yardley Sarah J , Codling Jan , Roberts Dai , O’Donnell Valerie , Taylor Sue
Published: May 2014

This article presents a framework for the practical implementation of a 24-hour specialist palliative care advice line, illustrated by two case examples from the authors’ experience. In the UK, National Institute for Health and Clinical Excellence guidance requires provision of 24-hour access to specialist palliative care advice for healthcare professionals and carers regardless of a patient’s location. Effective implementation of a telephone advice line for specialist advice is one approach to addressing the current variability in palliative care service provision, both in the UK and elsewhere. The authors were unable to identify a model with documentation for ensuring adequate clinical governance of an advice line in the literature and so present their own. The accompanying case examples demonstrate the difference between ‘evolution of services by demand’ and taking a systemic approach to service design. Key recommendations for practice are outlined for an effective advice line service which incorporates training and education into the clinical governance structures of the host organization.
Disclosing bad news to patients with life-threatening illness: Differences in attitude between physicians and nurses in Israel
Authors: Natan Merav Ben , Shahar Irit , Garfinkel Doron
Published: May 2014

Scant attention has been paid to the decision-making process of caregivers in disclosing bad news to patients. The purpose of this study was to describe factors influencing this process and to ascertain whether physicians and nurses behave differently, based on Ajzen and Fishbein’s (1980) theory of reasoned action (TRA). In this correlational quantitative research study, a validated anonymous questionnaire was administered to a convenience sample comprising 100 physicians and 200 nurses employed in several Israeli hospitals. The results indicate that only around 30% of physicians always disclosed bad news in the past, and that future decisions would be made on an individual basis. In contrast, more than 76% of nurses said that they would disclose bad news to their patients in the future. Caregivers find it difficult to disclose terminal status information to all types of patients, although most find it relatively easier in the elderly. TRA may help to predict disclosure of bad news by physicians and nurses. Behavioural beliefs, subjective attitudes and prior clinical experience with disclosure of bad news were the main factors influencing caregivers’ disclosure. The main predictors among nurses were behavioural beliefs and prior experience, and among physicians were subjective norms and prior experience.
Understanding the concept of a ‘good death’ in Japan: Differences in the views of doctors, palliative and non-palliative ward nurses
Authors: Murakawa Yasuko , Nihei Yoshiaki
Published: May 2014

Aim: Achieving a ‘good death’ is the ultimate goal for medical staff caring for terminally ill cancer patients, but the exact definition of a ‘good death’ is subject to interpretation. This exploratory study investigates the differences in how Japanese cancer care staff perceive a ‘good death’ by using factor analysis. Method: Participants included doctors, palliative and non-palliative ward nurses working in Miyagi Cancer Center, Natori, Japan. The various components of a ‘good death’ for cancer patients have been identified in a previous Japanese study. In the present study, respondents were asked to state the percentages of patients for which the component had been achieved, the extent to which the respondent contributed to achieving the component, and the concrete means they would use to ensure that patients were free from psychological distress and prepared for dying. Results: Medical staff had largely similar views on the percentage of patients for which a component of ‘good death’ was achieved. All the achievement ratings determined in the present study were considerably lower than the necessity ratings given by non-medical staff in a previous study. There were differences among medical staff with respect to their contribution to achieving a component of ‘good death’ and the concrete means they would use to achieve a ‘good death’.
Paediatric nurses’ knowledge of palliative care in Florida: A quantitative study
Authors: A Knapp Caprice , Madden Vanessa , Wang Hua , Kassing Kristin , Curtis Charlotte , Sloyer Phyllis , A Shenkman Elizabeth
Published: May 2014

Nurses routinely identify and suggest patients to physicians for possible referral to palliative care and discuss potential referrals with families. Knowledge of palliative care is essential for nurses, especially in paediatrics, where palliative care is less common than with adults. This study uses data from surveys from 279 paediatric nurses across Florida, USA. The palliative care quiz for nursing (PCQN) and the knowledge about hospice quiz (KHQ) were used. On the KHQ at least one-half of the nurses answered six out of seven questions correctly. On the PCQN at least one-half of the nurses answered 12 out of 20 questions correctly. Multivariate analyses show that receiving formal palliative care training and having worked at a hospice were associated with greater knowledge.

Paediatric nurses in Florida have a good level of baseline knowledge of palliative care. Nurses’ training programs should be used to increase knowledge, which may subsequently lead to more referrals.
The human face behind an ethical dilemma: Reflecting on attempted suicide and outcomes of a case study
Authors: Sneesby Ludmilla
Published: May 2014

This paper presents a challenging case study that reflects on the ethical and legal obligations of health-care workers. The case raised issues about the rights of terminally ill patients to refuse or reject treatment, and changed practice with the formulation of procedures and guidelines about self-harm, the wider issue of euthanasia, and the responsibilities of health-care workers in such cases. This case study is the story of Bernie (pseudonym), an 84-year-old man, from his admission to the palliative care outreach service, to his death. At the time of his attempted suicide, he was a patient of a palliative care outreach team at an Austalian hospital. The right of a person to take their own life, respect for autonomy and the actions of health-care workers are the basis of discussion.
Truth telling and the palliative diagnosis
Authors: Costello John
Published: May 2014

The start of a new year brings an opportunity for reflection on developments in palliative nursing in the last decade. Despite successes in many areas there is considerable scope for improving the way health professionals disclose information about diagnosis and prognosis (Costello, 2004).
A happy new year: humour and health care, part II
Authors: Smyth Dion
Published: May 2014

This quotation, which has at least two authors to whom it may be attributed, according to my internet search—a 17th century French essayist and an 18th century English dramatist—illustrates, perhaps, the conception that a considerable dichotomy may exist between the affective domain and cognition, and heartbreak and joy. Palliative care is often comprised of moments of care that combine these aspects and so, to reflect the dynamism of these concepts and to continue the theme of celebrating life, and death—through humour, Web Words further examines the internet’s offerings on this subject matter.
Management of multiple sclerosis and the role of respite and palliative care
Authors: Russell Nicola
Published: May 2014

Do people with multiple sclerosis (MS) need palliative care and respite provision? This question has been thrown into sharp focus by the recent decision taken by the MS Society to close their four respite homes in the UK