bluuebunny/crossref_metadata_2025 huggingface dataset:
The role of the palliative care nurse consultant in promoting continuity of end-of-life care
Authors: Blackford Jeanine , Street Annette
Published: May 2014

The provision of end-of-life care through a multidisciplinary integrated palliative-care approach is dependent on effective communication between professional groups and services. We did a qualitative study, using semi-structured individual and focus group interviews, in Melbourne, Australia. The research aim was to explore the experiences and strategies used by palliative care nurses to communicate with general practitioners. We found that palliative care nurse consultants in acute hospitals not only provided inpatient consultation, but also played an important part in facilitating continuity of care across health-care services by improving existing communication strategies and establishing further communication networks. However, there were several issues that had the potential to disrupt communication, and this article reports on the role of the palliative care nurse consultant in addressing these issues.
The study of family carers of people with a life-threatening illness 1: the carers’ needs analysis
Authors: Scott Gill , Whyler Nicole , Grant Gordon
Published: May 2014

This study examines the educational and supportive requirements of carers of people with a life-threatening illness. Responses would indicate the content and format of an educational or supportive programme of material that might then be developed. Twenty-four carers known to a Macmillan team in a national health service trust in the north of England were targeted for participation and quantitative data collected were analysed manually. Qualitative data arising from the carer interviews were subjected to a simple content analysis exercise that led to the identification of some overarching themes. In both strands of the research, similar emergent themes of physical, emotional and social stress were identified. Findings suggest that consideration of carers’ age, length of caring experience and gender may be helpful in understanding their experience of stress and in developing support strategies.
Caring in palliative nursing: competency or complacency?
Authors: Prior Deborah
Published: May 2014

Caring is an attribute of palliative nursing that is assumed to be fundamental. However, as the sophistication of palliative care increases, the liberal art of caring has become submerged under the weight of medical and pharmacological sciences. The nursing profession defends caring as the essence of its practice yet caring work in the palliative environment receives relatively little attention in research or in literature generally. Although it is accepted that nurses’ caring work sometimes involves intimate and private aspects of patient care, the value and positive outcomes of caring should not remain hidden. Palliative nurses have special but tentative opportunities to prove the value of caring and define the complexity of caring work. This article argues that nurses need to reclaim the caring ethic and demonstrate its worth.
The way forward: identifying palliative nursing research priorities within a hospice
Authors: Daniels Lilian , Howlett Catherine
Published: May 2014

This article presents how practice issues within a hospice were identified as a means of prioritizing areas for research and development. The Delphi technique was employed to facilitate nurses working in the hospice to participate in the study. Forty-six practice issues were identified by the nurses and prioritized as areas of research in the hospice. This enabled comparisons with other studies and the literature to be made. The identified research priorities were then utilized to structure a framework for practice development in the hospice which included; the use of weekly nurse meetings, interest groups and nurses studying for degrees and diplomas in order to address systematically the practice issues and develop an evidence-based practice approach.
Effective interagency and interprofessional working: facilitators and barriers
Authors: Cowley Sarah , Bliss Julie , Mathew Alison , McVey Gillian
Published: May 2014

In the UK the provision of palliative care is not the sole responsibility of the National Health Service (NHS); there is an overlap with continuing care, which falls within the remit of local authority social services departments. In addition, hospice and palliative care services are often considerably dependent on charities. Interagency and interdisciplinary working are, therefore, central to the successful delivery of palliative care. A multiple (four case) case study design was used to explore the provision of palliative and continuing care. The analysis identified the antecedents, structures and processes involved in the delivery of interprofessional working, along with the consequences of these in either a good model or one where problems were likely to prevail. Individual activities, roles and specific service configurations seemed far less significant than the overall culture, stability and long-term commitment to a service in a given area. Time is required for new service configurations to stabilize so that staff are able to overcome barriers and develop the necessary facilitators for quality care provision.
Spirituality in palliative care: what language do we need?
Authors: Byrne Marjory
Published: May 2014

Spirituality can be described as a search for meaning. At the time of a significant life crisis, such as is experienced by patients in palliative care, this search can become more pertinent. Patients and their families describe times of questioning and loss of faith as well as discovery, growth and a deepening of experience to a place of inner peace. Because spirituality has an increasingly wide range of interpretations, the delivery of spiritual care can understandably be equally diverse. This article has its limitations in that it concentrates on Christianity, partly because it is a known starting place from the experience of the author and still is relevant for many patients in the West. The holistic/whole person approach to nursing care has helped to refocus on the spiritual dimension of care. However, nurses require support and guidance as to how to approach spiritual care and understand its concept, which appears resistant to language – their basis for communication.
An audit of pressure ulcer incidence in a palliative care setting
Authors: Galvin Jean
Published: May 2014

This article reports a continuous audit of pressure ulcer incidence within a specialist palliative care unit over 2years. Details of every patient admission were considered (542 patients). Of these, 26.1% were admitted with pressure ulcers while 12.0% developed pressure damage during their stay. The retrospective audit looked at the ulcers developing in the unit and found these patients were older, stayed 12days longer and more of them died than the average for all patients admitted to the unit. In total, 95.3% were accurately assessed at ‘high’ or ‘very high’ risk using the Waterlow (1985) Pressure Sore Risk Assessment Tool and 89.2% of ulcers were Grade 1 or 2 measured using the Stirling Pressure Sore Severity Scale (Reid and Morrison, 1994). Of all developing ulcers, 78.4% were sacral and the position of the tumour, as well as comfort and positioning difficulties were considered most often responsible. Despite this knowledge and many ‘improvements’ introduced, the incidence did not improve with superficial ulcers often developing in the last days of life.
Palliative care research: methodological and ethical challenges
Authors: Dean Ruth A , McClement Susan E
Published: May 2014

Nursing research in palliative care has, to date, been limited. As palliative care is increasingly recognized as a nursing specialty area, it requires the scientific foundation that research provides. Palliative care clients are particularly vulnerable because of the intensity of their illnesses and the emotional impact of impending death. This article identifies and discusses ethical and methodological challenges faced by those conducting research with this population. Suggestions for strategies that may help researchers meet these challenges are included.
The Preferred Place of Care document: aam opportunity for communication
Authors: Pemberton Christine , Storey Les , Howard Anne
Published: May 2014

The aim of palliative care is to achieve quality of life and a dignified death, preferably in a place of the patient’s choosing. Good communication is vital if patients’ and carers’ wishes are to be heard and respected. Here the authors describe how a document developed to help assess an education programme has aided communication in ways that were, at times, unexpected.
Malodorous fungating wounds: uncertain concepts underlying the management of social isolation
Authors: Piggin Catherine
Published: May 2014

Malodorous fungating wounds can exacerbate the social isolation of patients with palliative care needs through changes in patients’ body image. There is a lack of consensus regarding the most effective management approaches for patients with malodorous fungating wounds. This appears to relate to the existence of different theoretical frameworks for understanding altered body image. This article explores the theories used to create frameworks that have been used for interventions with patients experiencing social isolation arising from altered body image. It argues that there is a need for health-care professionals to appreciate the lack of consensus within the literature and to understand this in the context of the relationship between theory and research. The author offers research and clinical recommendations.
Should two senior cancer-nursing posts be integrated as one leadership function?
Authors: McEvoy Mel , Mullan Aidan
Published: May 2014

Uncertainty exists regarding the roles of the nurse consultant in cancer and palliative care and the lead cancer nurse. This article argues that there are advantages in combining the two posts. The discussion draws on relevant literature and argues that both posts have the same outcomes, which are achieved through different means and approaches to the delivery of cancer services. In order to make the combined post work within a trust, a particular support and structure is required. There may be a greater potential for cancer nursing because the leadership role combines the strategic perspective of the lead cancer nurse with the nurse consultant’s focus on practice development and the professional development of staff.
Positive aspects and challenges associated with caring for a dying relative at home
Authors: Hudson Peter
Published: May 2014

Research has consistently shown that family caregivers have a variety of unmet needs, despite comprehensive professional support for caregivers being a central aim of palliative care. This sub-study of a larger randomized controlled trial sought feedback from 47 primary family caregivers of advanced cancer patients who had recently commenced home palliative care. During semi-structured interviews in their homes, family caregivers were asked to comment on the key challenges associated with their role and whether they could identify any positive aspects. All caregivers were able to identify challenges. These were associated with their own ill health, family circumstances, insufficient skills to manage patient symptoms, limited time for themselves and inadequate support from health professionals. Despite these challenges, 60% of family caregivers were readily able to identify positive aspects of the role. Previous research has tended to focus on the negative impact of caregiving. The extent to which the positive aspects buffer the negative aspects of the role warrants further exploration, as does the long-term impact of the caregiver role on those who are unable to recognize positive elements.
The development of an interdisciplinary outpatient clinic in specialist palliative care
Authors: Oliver David
Published: May 2014

The interdisciplinary team approach is essential in the assessment and management of the palliative care of patients and their families. An innovative approach has been developed to allow the interdisciplinary team to see patients and their families in an outpatient clinic setting. This has allowed an improved assessment and has demonstrated to patients that a wider approach is undertaken. These interdisciplinary outpatient clinics have been audited and appear to be effective, and acceptable to patients and families.
Pain and agitation in long-term care residents with dementia: use of the Pittsburgh Agitation Scale
Authors: Zieber Colin G , Hagen Brad , Armstrong-Esther Chris , Aho Morgan
Published: May 2014

Aim To explore the relationship between total and sub-scores of the Pittsburgh Agitation Scale (PAS) and five proxy measures of pain in long-term care (LTC) residents.

Study design Descriptive correlational design.

Sample and setting Fifty eight residents in three LTC facilities in rural Western Canada with moderate to severe cognitive impairment took part in the study. Six full-time registered nurses working in the facilities and three palliative care nurse consultants provided pain and agitation assessments.

Measurements Registered nurses used PAS to assess agitation. The five proxy measures of pain were the Discomfort Scale for Dementia of the Alzheimer’s Type (DS-DAT), number of pain diagnoses, use of analgesic medications, and pain ratings by both facility nurses and palliative care nurse consultants.

Results There was a moderately strong relationship between total PAS agitation scores and total DS-DAT pain scores (r=0.51, P<0.01). The PAS sub-score ‘resisting care’ was significantly correlated with total DS-DAT scores (r=0.46, P<0.01), and pain ratings by both facility nurses (r=0.48, P<0.01) and palliative care nurse consultants (r=0.51, P<0.01).

Conclusions For certain residents with dementia, PAS may allow assessment of both agitation and uncommunicated pain. It is possible that the PAS form of agitation ‘resistance to care’ may indicate pain that individuals cannot otherwise communicate. One possible response to such resistance would be to trial pain medication and reassess agitation. Nursing staff in LTC facilities may need additional training in pain assessment of residents with dementia.
Terminal restlessness: perspectives of an interdisciplinary palliative care team
Authors: Brajtman Susan
Published: May 2014

Aim To explore an interdisciplinary team’s perceptions of families’ needs and experiences surrounding terminal restlessness.

Design A qualitative exploratory design using two focus groups.

Sample Participants were members of an interdisciplinary palliative care team working in a palliative care unit in a university teaching hospital in Israel.

Results The palliative care team confronted several challenging and stressful issues surrounding the management of terminal restlessness that influenced their treatment decisions and relationships with families. Four themes reflected the participants’ perceptions and experiences: suffering, maintaining control, feelings of ambivalence and valuing communication to reduce conflict.

Conclusion Findings suggest the need for comprehensive treatment plans to meet the special supportive and information needs of these families, specific supportive strategies for the professional caregivers and further studies to develop ethical criteria and evidence-based guidelines for the use of sedation in the management of terminal restlessness.
Bereaved carers' views of a hospice at home service
Authors: Exley Catherine , Tyrer Freya
Published: May 2014

Introduction

In recent years, there has been an increase in specialist palliative care services in the home. Despite this, there have been relatively few published evaluations of such care.

Methods

This is a qualitative study which used semistructured interviews to explore bereaved carers' views and experiences of a hospice at home (HAH) service in the East Midlands, UK. Eleven interviews were conducted and analysis followed the framework approach.

Results

Carers' views were divided into four themes: caring for someone at home; formal care provided by HAH; access to out-of-hours care; and provision of specialist equipment.

Conclusions

Bereaved carers generally gave very positive accounts on care delivered by the HAH service. Shortcomings identified were the provision of out-of-hours care and the untimely supply and removal of specialist equipment. It is suggested that bereaved carers provide useful insights for qualitative evaluations of end-of-life services delivered in the home.
Emotion work in the palliative nursing care of children and young people
Authors: Maunder Eryl Zac
Published: May 2014

The nurse’s role in supporting and caring for children and young people with life-limiting illness/conditions and their families requires specialist expertise. This domain can be one of the most emotionally challenging areas of practice. The concept of time, and how long practitioners are involved with individual children and their families may sometimes be underestimated. Emotion work is defined as the work involved in managing feelings in both self and others (Hochschild, 1983). The sense of community within the clinical setting can facilitate the nurse to care and maintain professional boundaries.
Managing beyond an uncertain illness trajectory: palliative care in advanced heart failure
Authors: Hoyt Zambroski Cheryl
Published: May 2014

A lack of comprehensive and effective palliative care is clearly evident in a number of studies describing the end of life for patients with advanced heart failure. These patients have been portrayed as experiencing a wide array of poorly managed symptoms. The primary rationale for the lack of care has been the uncertain illness trajectory that characterizes living with advanced heart failure. Nurses must manage care beyond the illness trajectory from an emphasis of palliative care as each of these patients may face significant illness burden and even sudden death. The purpose of this paper is to:

Discuss the current status of palliative care for patients with advanced heart failure Explain the basic pathophysiology and resulting signs and symptoms of advanced heart failure Describe pharmacological and non-pharmacological symptom management strategies for patients with advanced heart failure.
Breaking bad news to parents: the children’s nurse’s role
Authors: Price Jayne , McNeilly Patricia , Surgenor Mark
Published: May 2014

Breaking bad news is an extremely difficult and challenging process for the healthcare professional. The National Service Framework for Children in the UK highlights that the manner in which the healthcare professional delivers bad news impacts upon the way it is received, interpreted, understood and dealt with. The children’s nurse, as an instrumental member of the multidisciplinary team caring for the child and family, is central to this complex communication process. This article examines the literature surrounding the breaking of bad news and introduces a new framework that outlines the multifaceted role of the children’s nurse within this complex, challenging process.
Caring for patients with terminal delirium: palliative care unit and home care nurses’ experiences
Authors: Brajtman Susan , Higuchi Kathryn , McPherson Christine
Published: May 2014

Aim To explore palliative care unit and home care nurses’ experiences of caring for patients with terminal delirium.

Design A qualitative exploratory design using individual interviews.

Sample Participants included five nurses working in an interdisciplinary palliative care unit located in a large Canadian city hospital, and four nurses from a palliative home care nursing team located in the same city.

Results Nurses in both sites experienced multiple challenges caring for delirious patients. Additional education on delirium and collaborative teamwork were viewed as key factors in enhancing their ability to care for and support this patient and family population. Four core themes reflected the participants’ perceptions and experiences: experiencing distress; the importance of presence; valuing the team; and the need to know more.

Conclusion Findings suggest the need for interdisciplinary educational initiatives focused on the identification and management of terminal delirium, and targeted to the specific context in which nurses practice.
Interprofessional working: communication, collaboration…perspiration!
Authors: Dawson Sheila
Published: May 2014

Palliative care is rarely delivered by one provider; for most patients their care will be managed by community and one or more hospital teams at the least. This can be problematic for patients, their family and friends, and health professionals. Evidence suggests that, in general, providers work in isolation from each other. Although formal processes are in place for transfer of information between the sectors on discharge between acute and community sectors, there is a de facto lack of communication and therefore a lack of appreciation of the working practices within each environment. This resulting lack of collaboration between teams can lead to disruptive care that detracts from the holistic philosophy purported to be the basis of supportive and palliative care (National Institute for Health and Clinical Excellence (NICE) 2004; Department of Health (DH) 2000). In October 2005, 20% of a clinical nurse specialist’s (CNS) full-time post was dedicated to working between the palliative care teams of Central Manchester and Manchester Children’s NHS Trust (CMMC) and Central Manchester PCT (CMPCT). The aim was to improve communication and dialogue to promote more effective integrated working between the two sites and develop effective interprofessional working. This article will evaluate the impact of this new post, after 18 months, on collaboration between the teams, their practices and their patients. Finally, it will offer recommendations for future development.
An audit of the use of the Barthel Index in palliative care
Authors: Godfrey Jackie , Poole Lisa
Published: May 2014

The Barthel Index (Mahoney and Barthel, 1965) is an objective tool which assesses an individual’s ability to perform activities of daily living; for example, personal care, mobility, transfers, bathing and feeding. The purpose of this study was to investigate whether the Index could be used with patients with life-threatening illnesses who are admitted to the inpatient intermediate care unit, to aid clinical practice, establish patients’ current level of function, and highlight any progress or deterioration in abilities. The overall aim was to facilitate discharge planning and ensure that patients were managed in their preferred place of care. This was a clearly defined group of patients in a specific clinical area. The authors recognise that to improve consistency of findings, the study may need to be applied to a larger cohort of patients with a greater research emphasis.

The article presents the results of an audit of 50 patients. The findings suggest that those patients with a low Barthel score on admission, or those with a score dropping by ten or more per week, are significant predictors of a short prognosis. It concludes that the Barthel Index would be a useful tool in the community to prevent inappropriate admission for those with a low score where the patient wishes to die at home. It could also be used as a monitoring tool to help discharge planning and fast-tracking to the preferred place of care in inpatient settings, and may also assist in community health care (CHC) planning.
The reflections you get: an exploration of body image and cachexia
Authors: Hinsley Ros , Hughes Rhidian
Published: May 2014

Background: Cachexia has a detrimental effect on quality of life and is an indicator of poor prognosis. The meanings people attach to their lived experiences of cachexia is unknown.

Aims: To explore the impact of cachexia on body image of people with advanced cancer, their emotions, relationships and social functioning.

Design: Qualitative study using face to face in-depth interviews of a conversational style. Rich narrative data analysed by thematic content analysis.

Participants: Twelve participants recruited from two community palliative care teams in south east England.

Results: Altered body image impacts onto other aspects of embodiment: the emotions, spirituality, relationships and social functioning. Lives were restricted and isolated, which was compounded by emotional distancing by carers and health care professionals. Participants discussed their repeated attempts to re-adapt to disruptions of self caused by an altered body image.

Conclusions: The key study implications focus on the need for: i) improved holistic care and support, and advice; ii) training and awareness raising of care professionals and iii) further research on the lived experiences of the condition and the development of effective measures of cachexia.
Theraputic relationships in specialist palliative care nursing practice
Authors: Canning Deebs , Rosenberg John P , Yates Patsy
Published: May 2014

There has been limited research into the scope or standards of specialist palliative care nursing practice in an Australian context. This study sought to develop a competency framework that described the core domains of specialist palliative care nursing. This article explores one key domain of specialist palliative care nursing practice – therapeutic relationships – that was identified as underpinning other domains of practice.

A mixed method was used, involving a literature review, a survey including practice exemplars and an interview of specialist palliative care nurses. Seventy-four registered nurses working in designated specialist palliative care nursing roles from each Australian state and mainland territory were involved. The nurses represented metropolitan, regional, rural and remote communities, various inpatient facilities and community practice settings. Five core domains of specialist palliative care nursing practice were identified: complex supportive care, collaborative practice, leadership, improving practice and therapeutic relationships. Therapeutic relationships were identified as the central domain of specialist palliative care nursing practice to which all other domains were inextricably linked.
A survery of commitment and compassion among nurses in residential aged care
Authors: Phillips Jane L , Davidson Particia M , Ollerton Richard , Jackson Debra , Kristjanson Linda
Published: May 2014

Aim: To assess the views and attitudes of aged care staff providing direct care towards palliative care and to identify their learning needs.

Design: Survey design using purposive sampling methods.

Findings: Nurses and care assistants (n=222) employed within nine residential aged care facilities in regional Australia completed the survey. The majority had received ‘on the job training’ and were committed to providing end-of-life care. Differences in the level of confidence to deal with patient/family interactions and manage complex palliative care scenarios were evident between nurses and care assistants (p<0.05). Both nurses and care assistants perceived a need for further education in symptom management and communication, yet their content need differed significantly between groups.

Conclusions: Nurses and care assistants in residential aged care facilities demonstrate commitment to the delivery of palliative care and express a need for increased palliative care competencies. The heterogeneity of roles and educational preparation within the aged care workforce indicate that tailored palliative care education initiatives are required to meet the learning needs of aged care nurses and care assistants, particularly in relation to end-of-life care. These data have implications for skill-mix and model of care development.
Implementation of SIGN 44 guidelines for managing cancer pain in a community setting
Authors: A Loftus Linda , McIntosh Jean , Peace Elaine , Tolson Debbie
Published: May 2014

This paper discusses the realistic evaluation of an evolving managed clinical network (MCN) in palliative care. The primary focus of this community-based MCN was to improve cancer patients’ pain by implementing clinical guidelines. The methods of evaluation included three case studies which featured interviews with patients, relatives and health professionals involved in their care. The results of the case studies were fed back to the network executive group during focus group interviews. The case studies and focus group interviews were carried out at approximately five-monthly intervals. The model of care being implemented by health professionals was refined by the network executive group following each focus group interview. The context, mechanisms and outcomes which evolved from the evaluation contained some elements of a best practice model for controlling pain for patients with advanced cancer.
Hope in terminal illness: an evolutionary concept analysis
Authors: Johnson Sarah
Published: May 2014

Aims: To clarify the concept of hope as perceived by patients with a terminal illness, to develop hope as an evidence-based nursing concept, to contribute new knowledge and insights about hope to the relatively new field of palliative care; endeavouring to maximize the quality of life of terminally ill patients in the future.

Method: Utilizing Rodgers’ (2000a) evolutionary concept analysis methodology and thematic content analysis, 17 pieces of research-based literature on hope as perceived by adult patients with any terminal illness pathology, from the disciplines of nursing and medicine have been reviewed and analyzed. An exemplary case of the concept in action is presented along with the evolution of the concept hope in terminal illness.

Results: Ten essential attributes of the concept were identified: positive expectation; personal qualities; spirituality; goals; comfort; help/caring; interpersonal relationships; control; legacy; and life review. Patients’ hopes and goals are scaled down and refocused in order to live in the present and enjoy the time they have left with loved ones.

Conclusion: By completing all the steps to Rodgers’ (2000a) evolutionary view of concept analysis, a working definition and clarification of the concept in its current use has been achieved. This provides a solid conceptual foundation for further study.
Development and implementation of a palliative care link-nurse programme in care homes
Authors: Heals Denise
Published: May 2014

The End of Life Care Strategy (Department of Health, 2008) stresses the importance of education for all healthcare professionals in the delivery of care in any setting. According to the recent End of Life Care report from the National Audit Office (2008), few care home staff have sufficient training in providing end-of-life care, highlighting communication skills and pain management as two target areas for training. This article explores the development and implementation by a hospice education department of a palliative care link nurse programme in care homes with nursing as a means of providing aspects of the required training. Maintaining the motivation and commitment of the care home staff and managers is seen as vital in sustaining the programme, which has been running successfully for 4 years. It is important to differentiate between care homes with nursing (those that used to be called nursing homes) and care homes without nursing (those that used to be called residential homes). The terminology has changed to reflect the different client group. An evaluation of the programme was undertaken after 1 year and the key findings are discussed and future developments are highlighted.
Affective learning in end-of-life care education: the experience of nurse educators and students
Authors: Brien Louise-Andrée , Legault Alain , Tremblay Nicole
Published: May 2014

Preparing future nurses to care for dying patients and their families represents a challenge for nursing education. Affective learning, essential to nurture a caring perspective in end-of-life care, can elicit strong emotional reactions in students, to which nurse educators must remain keenly sensitive. This article presents the experience of nurse educators and students with experiential and reflective activities addressing the affective domain of learning, within an intensive 4-week undergraduate course on end-of-life care, developed with a competency-based approach. It stressed the importance of strategic teaching for developing interpersonal competencies in end-of-life care, but revealed difficulties for both nurse educators and students in assessing outcomes derived from affective learning.
Saying it in song: music therapy as a carer support intervention
Authors: O’Kelly Julian
Published: May 2014

The burdens experienced by informal caregivers are likely to increase in the context of the UK’s ageing demographic, and the movement towards more home-based care for those with long-term, chronic or palliative illnesses. This article combines an overview of our understanding of caregiving and carer support interventions, with an outline of the evidence base for music therapy in palliative care. Case material from the author’s experiences of songwriting with a carer is used to provide a practical insight into how this emerging palliative care discipline may have the potential to alleviate carer burden, and enhance wellness. More research to explore the efficacy of music therapy as a carer support intervention is recommended.
Palliative care nurses’ experiences of training in cognitive behaviour therapy and taking part in a randomized controlled trial
Authors: Cort Elizabeth , Moorey Stirling , Hotopf Matthew , Kapari Marcia , Monroe Barbara , Hansford Penny
Published: May 2014

Background: This article describes the experiences of clinical nurse specialists in a palliative homecare team who took part in a cluster randomized controlled study. The study aimed to determine whether palliative care nurses given basic training in cognitive behavioural therapy (CBT) were able to use core components of this training when treating advanced cancer patients with anxiety or depression. Method: Fifteen nurses were randomly allocated to either receive training in cognitive behavioural techniques or to continue their practice as usual. Nurses were interviewed following the CBT training and after the research study. Results: The CBT group reported a positive change in their approach to patients. Nurses felt empowered, more skilled and effective not only to assess and support patients with symptoms of anxiety and depression but also to facilitate change. In addition, nurses placed considerable value on being given a psychological model and set of interventions. Conclusion: Nurses found taking part in the study demanding in terms of time and commitment; however, the authors conclude that research in the community palliative care setting is feasible.
Enteral tube feeding in older people with advanced dementia: Findings from a Cochrane systematic review
Authors: Candy Bridget , Jones Louise , Sampson Elizabeth L
Published: May 2014

Aim: Enteral tube feeding for people with advanced dementia who have difficulty swallowing and poor nutritional intake is common. Potential benefits or harms of this practice are unclear and the authors aimed to evaluate the outcomes of this intervention. Methods: A full literature review was undertaken in April 2008. Randomized controlled trials (RCTs), controlled clinical trials, controlled before and after studies, interrupted time series studies and controlled observational studies that evaluated the effectiveness of enteral feeding via a nasogastric tube or via a tube passed by percutaneous endoscopic gastrostomy were selected. The study population comprised adults aged 50 and over with a diagnosis of advanced primary degenerative dementia who had poor nutritional intake and/or developed problems with eating and swallowing. The primary outcomes were survival and quality of life (QOL). Results: No RCTs were identified. Seven observational controlled studies were found; six assessed mortality. There was no evidence of increased survival in people with dementia receiving enteral tube feeding. The other study assessed nutritional outcomes. None of the studies examined the effect on QOL and there was no evidence of benefit in terms of nutritional status or the prevalence of pressure ulcers. Conclusions: There is insufficient evidence to suggest that enteral tube feeding is beneficial in people with advanced dementia. Data is lacking on the adverse effects of this intervention.
An analysis of the palliative care education needs of RGNs and HCAs in nursing homes in Ireland
Authors: McDonnell Mary M , McGuigan Eileen , McElhinney Joanne , McTeggart Marie , McClure David
Published: May 2014

Aim: To identify the palliative care education needs of registered general nurses (RGNs) and health-care assistants (HCAs) working in care of the older person units (nursing homes). Method: A questionnaire was sent to all RGNs and HCAs working in nursing homes run by the Health Service Executive (HSE) in one health-care region in Ireland. Results: RGNs identified eight specific educational needs: understanding of the dying process; pain and symptom management; improved communication skills; nutritional assessment issues; practical skills; the appropriate use and management of syringe drivers; and the role of complementary therapies. HCAs identified a need to improve their communication skills and clarify their role. Both groups identified the need for support when caring for dying patients and the need to improve their understanding of palliative care and the role of specialist palliative care (SPC) services. There was a significant difference between the RGNs’ and the HCAs’ level of understanding of palliative care (P=0.00). Conclusion: This study demonstrated that RGNs and HCAs working in care of the older person settings have palliative care educational needs. It also established a difference in the educational background and palliative care understanding of RGNs and HCAs. This study therefore identified the need to develop separate education programmes.
Development and evaluation of an international, interdisciplinary palliative care workshop in Botswana
Authors: Ersek Mary , Sebego Miriam , Bloom Alicia Marini , Shaibu Sheila , McMenamin Erin , Mokotedi Mosidi
Published: May 2014

Aim: This paper reports the development and evaluation of an interdisciplinary, international palliative care workshop presented in Gaborone, Botswana. Method: A 5-day workshop was held in June 2009 at the University of Botswana. Clinicians, faculty, and students from throughout Botswana were invited to attend at no cost. Participants included nurses, social workers, physicians, pharmacists, chaplains and volunteers. Learning activities included lectures, case studies, and group discussion. Results: Evaluation indicated high satisfaction with the workshop and significant, though modest, gains in knowledge and self-evaluation of palliative care skills. Discussion revealed important clinical issues for attendees and underscored the need to coordinate national efforts to enhance palliative care in Botswana. Conclusion: The international collaborative palliative care workshop increased the knowledge and commitment of attendees. Additional collaborative efforts to educate providers, coordinate care, and change policies and practices are needed to integrate palliative care fully into health care in Botswana.
Advance care planning among Asian Americans and Native Hawaiians receiving haemodialysis
Authors: Kataoka-Yahiro Merle R , Conde Francisco A , Wong Rachael S , Page Victoria , Peller Bernice
Published: May 2014

Aim: To explore the attitudes about death and dying, advance care planning (ACP), and completion of ACP among Asian Americans (AAs) and Native Hawaiians (NHs) receiving haemodialysis. This study was a descriptive, cross-sectional survey design. Method: A convenience sample of 50 participants aged 30-82 years was recruited from four outpatient dialysis centers in Honolulu, Hawaii and interviewed face-to-face using a 43-item end-of-life community survey. A majority of participants perceived dying as an important part of life and were comfortable talking about death, but expressed concerns and fears about end-of-life issues. Aspects of ACP, such as planning a funeral service, getting finances in order, and completing the will were important. While most participants’ attitudes about ACP were positive, less than half (40%) had completed ACP. Most participants preferred initiating end-of-life conversations with family. Conclusions: The main conclusions drawn from this study are that there is a need for ACP and secondly that AAs and NHs would prefer to discuss ACP with family members rather than health or legal professionals. Findings from this preliminary study build on the need to use a theoretical framework in which to develop sound instruments and effective interventions to promote ACP completion among AAs and NHs receiving haemodialysis.
What is it so stressful about caring for a dying patient? A qualitative study of nurses’ experiences
Authors: Peterson Jennifer L , Johnson Malynnda A , Halvorsen Bonnie , Apmann Lisa , Chang Pi-Ching , Kershek Stephanie , Scherr Courtney , Ogi Matthew , Pincon Deborah
Published: May 2014

The nursing shortage continues to be a problem in the United States, in part, owing to the experience of stress and burnout by practicing nurses. With an ageing population, the stress of caring for dying patients and their families is one reason for the high levels of stress and burnout. Although we know that caring for dying patients is stressful for nurses, there is little information about the specific aspects of that experience that concern them. In order to alleviate the stress and to help nurses cope more effectively with this situation, this research examined the aspects of caring for a dying patient that cause concern for nurses. This study used a grounded theory approach to examine the experiences of nurses and their particular concerns about caring for a dying patient. Nurses expressed personal concerns, concerns about the patient and their families, which include communication challenges with both patients and families.
A review of an out-of-hours telephone support service for palliative care patients and their families
Authors: Carlebach Sarit , Shucksmith Janet
Published: May 2014

Offering people at the end stages of life the chance to die in their own homes is acknowledged good practice and can bring comfort to terminally ill people, but it can also be a hard choice to sustain. Carers may find it extremely difficult to cope with the emotional ordeal of losing a loved one and dealing with the medical problems that are involved but their voices are infrequently heard. This study reports an evaluation of an out-of-hours service operating in one primary care trust in north east England, and focuses on the use of a telephone support service, which backed up domiciliary visits by specialist palliative care nurses. Interviews, focus groups and an open-ended questionnaire were carried out with 27 participants. Results revealed that staff, patients and carers appreciated being able to telephone the service (reactive). In addition carers felt particularly well supported by the service staff who proactively telephoned them on an agreed basis as part of the highly individualized telephone monitoring scheme. Such services support the call for the creation of a whole system approach for both palliative care patients and their carers.
Principles of nutrition in the palliation of long-term conditions
Authors: Holmes Susan
Published: May 2014

Palliative care, directed toward alleviating symptoms and improving quality of life, should be available to all those with chronic or incurable illness. Good nutrition is central to such care meeting patients’ physical requirements and psychosocial needs, thus helping them to maintain a sense of autonomy and normality while also promoting psychological comfort, communication, and social interaction. Many patients receiving palliative care experience difficulties in maintaining an appropriate food intake, which presents many challenges for practitioners and requires an understanding of both nutrition and patient needs. This article describes the types of nutritional support that are available in the palliative care setting, as well as important ethical factors relevant to considerations of starting and withdrawing artifcial nutrition.
End-of-life care considerations for gay, lesbian, bisexual, and transgender individuals
Authors: Rawlings Deb
Published: May 2014

Negative social attitudes, discrimination, and homophobia affect gay, lesbian, bisexual, and transgender (GLBT) individuals during their lifetimes. These experiences can affect how these individuals access health services and interact with health professionals, resulting in adverse outcomes compared with their heterosexual counterparts. End-of-life experiences can also be shaped by these factors. There are implications for health professionals in terms of equity of access to targeted health care, preventive screening, and visibility in policy, as well as in principles of inclusiveness, dignity and respect, and competence in care. This article takes a brief look at some of the issues specific to the end-of-life care of GLBT individuals, using a case study as an illustrative example. Holistic care at the end of life is a familiar concept to palliative care nurses, but it is important to place greater emphasis on considering competence in aspects of care relating to sexuality.
Circumstances surrounding death and nursing difficulties with end-of-life care for individuals with ALS in central Japan
Authors: Ushikubo Mitsuko , Okamoto Koichi
Published: May 2014

Purpose:

This study aimed to clarify the circumstances surrounding death for people with amyotrophic lateral sclerosis (ALS) in Japan and difficulties in providing home-care end-of-life nursing for these individuals.

Method:

A questionnaire was mailed to the directors of 709 home-care nursing agencies located in central Japan.

Results:

Of 232 questionnaires returned (response rate 32.8%), 49 reported treating someone with ALS. Overall, 31% of these patients died at home, whereas 63% were admitted to hospital from a few days to months preceding death. Respiratory insufficiency was identified as the cause of death in 73% of cases, 45% of the deaths were sudden, and 27% of the deaths involved CO2 narcosis. Analysis of the reported nursing difficulties resulted in five categories: lack of adaptation to the disease or disease progression by the patient and/or their family, involvement with family, how to select/deliver care, decision-making and communication, and poor collaboration with other practitioners.

Conclusion:

Family care and family education are important to supporting the end-of-life process for people with ALS. Use of advance directives and collaboration with other related practitioners are recommended to enhance communication linked to psychological care and informed consent.