bluuebunny/crossref_metadata_2025 huggingface dataset:
Education and information on syringe drivers
Authors: Smyth Dion
Published: May 2014

Oral medicine is the preferred means of treatment administration in palliative care. However, there are times when this is unsuitable. Battery-operated portable syringe drivers offer a convenient solution, ensuring the accurately controlled delivery of bolus or continuous doses of drugs, whether subcutaneously or intravenously administered. This month’s Web Words reviews some sites providing practical advice and assistance on the use of these drug-delivery devices.
Assessing palliative care outcomes for people with motor neurone disease living at home
Authors: Hughes Rhidian A , Aspinal Fiona , Higginson Irene J , Addington-Hall Julia M , Dunckley Maria , Faull Christina , Sinha Anu
Published: May 2014

A number of palliative care outcome measures are used to facilitate the provision of palliative care. This short article reports the use of one palliative care outcome measure, the Palliative care Outcome Scale, with people with motor neurone disease (MND) living at home. The outcome measure was generally viewed positively by those involved. However, problems with this scale itself point to the need for a specialized instrument to assess palliative care outcomes for people living with MND.
Learning disabilities and palliative care: recognizing pitfalls and exploring potential
Authors: Read Sue
Published: May 2014

People with learning disabilities may experience poorer health, have additional health needs and often die younger than the average population. They may be diagnosed with palliative conditions but have difficulties accessing appropriate assessment, treatment and subsequent care. This position paper introduces the recognized challenges of providing high quality palliative care to people with learning disabilities and explores the potential for delivering appropriate palliative care for this vulnerable population within the UK. The article concludes with recommendations for practice development
Bereavement care for families part 1: a review of a paediatric follow-up programme
Authors: deJong-Berg Margaret A , deVlaming Deborah
Published: May 2014

The World Health Organization suggests that palliative care needs to offer a support system to the family during the patient’s illness as well as during his/her bereavement. Bereavement follow-up services in paediatrics offer families an additional source of support in their grieving process. This article reviews the development of a bereavement follow-up programme delivered by the paediatric palliative care team and explores the lessons learnt and challenges faced in developing the programme.
A guide to wound managment in palliative care
Authors: Naylor Wayne A
Published: May 2014

Wound management in palliative patients is often a very challenging area of care. There are many unique issues that can combine to produce complicated wound management scenarios, including the types of wounds and wound symptoms most commonly affecting palliative care patients, as well as the presence of concurrent disease and associated treatment. Problems exist with the availability of suitable dressings and balancing life expectancy with the goals of wound care. A significant, and possibly under-recognized, issue is the emotional and social distress experienced by these patients, which can be directly attributed to their wound. These problems must all be recognized and addressed in order to manage wounds effectively in this patient population. This article aims to explore these issues and offer advice on the management of wound-related symptoms, with the ultimate goal of improving patients’ quality of life.
Mission statements: an example of exclusive language in palliative care?
Authors: O’Connor Margaret
Published: May 2014

This article discusses the language used in palliative care and the possibility of exclusive language being a barrier to uptake of services by users. The author illustrates this with an analysis of mission statements from palliative care services in an Australia state. Although language is just one aspect affecting service use, this author argues that services need sensitivity about the language they use, so that public statements are understandable and remain consistent with the philosophy of care.
The practice of pilgrimage in palliative care: a case study of Lourdes
Authors: Lillie Alison Kate
Published: May 2014

Aim

To understand why healthcare professionals working in palliative care felt that pilgrimage to Lourdes could be a beneficial activity for the terminally ill.

Design

A qualitative study using a phenomenological framework.

Methods

Nine semistructured interviews with a purposive sample of hospice staff.

Results

The reasons given for accompanying the terminally ill to Lourdes reflected the general aims of palliative care. They included improving the quality of life through the provision of a holiday, maintaining patient choice and autonomy and enabling inner-transformations. The communitas, or altered relationships, formed during the pilgrimage were also seen as beneficial.
Advanced cancer in children: how parents decide on final place of care for their dying child
Authors: Hannan Julia , Gibson Faith
Published: May 2014

Aim To explore retrospectively the decisions made by parents regarding their choice of place of care at time of death for their child with advanced cancer.

Design Cross-sectional descriptive study.

Analysis Interpretive phenomenological analysis.

Sample Parents of five children who had died of advanced cancer, whose care was overseen by the participating paediatric oncology centre in the southeast of England. Three children died at home, and two in hospital.

Results Seven themes were identified, four of which will be discussed: valuing time left; needing to feel safe and secure; we didn’t know what to expect; and the difference between specialist and non-specialist staff. Families’ decisions were instinctive or intuitive rather than a calculated weighing up of options. Families identified aspects of care that were both valuable and could be improved.

Conclusion Parents value the time that their children have to live when they know that their child’s disease is incurable. Decisions around place of care are just that, decisions around place of care not place of death. Families valued the same types of support from staff regardless of the setting in which care was provided and found the same deficiencies difficult.
The palliative care nurse’s role in supporting the adolescent child of a dying patient
Authors: Sweetland Caroline
Published: May 2014

The aim of this article was to critically evaluate the author’s role as a hospital-based palliative care nurse in supporting the adolescent child of a dying parent. The approach taken and the resources that were available have been reflected upon. The article explores whether it was possible to adapt the theory of bereavement support for those working with adults within the constraints of a busy acute hospital. It was found that although there were limitations to the amount of support the author could give within her role, there remains a window of opportunity for all healthcare professionals within this field to support parents in preparing their children for bereavement.
Is the Palliative Care Outcome Scale useful to staff in a day hospice unit?
Authors: Slater Adrienne , Freeman Elaine
Published: May 2014

Aim This study was undertaken to elicit a day hospice team’s experience of using the Palliative Care Outcome Scale (POS), with the intention of determining its usefulness to staff. An adapted version of POS was used for the purpose of the study.

Sample A multiprofessional team of eight day hospice staff took part in the study. All had used POS on a weekly basis for a minimum period of 3 months.

Design A focus group was conducted at the hospice. It was tape-recorded and transcribed verbatim. The data were analysed using an interpretive phenomenological approach.

Results Staff felt POS had limited value as an outcome measure for use in this day hospice. Other simultaneous organizational changes at the hospice may also have influenced staff negatively. Further research is needed to explore similar implementation issues in more depth, as practice developments may be abandoned for potentially the wrong reasons.
Aspects of caring for dying patients which cause anxiety to first year student nurses
Authors: Cooper Jan , Barnett Mandy
Published: May 2014

Aim To examine what aspects of caring for dying patients cause anxiety in student nurses during their first year of training.

Design Qualitative descriptive study.

Setting A university in the UK delivering preregistration nurse education.

Method A purposive sample of 38 student nurses who had just completed their first year of their programme consented to participate in the study. Data triangulation was employed, with data collected from students’ reflective diaries and two focus group meetings.

Findings Eight themes emerged relating to students’ anxiety about caring for dying patients: coping with the physical suffering of patients: what to do or say; the severing of the relationship with the patient; the type of death; cardiopulmonary resuscitation; last offices; coping mechanisms; and interventions that would improve the student experience.

Conclusion Findings from the study suggest that it is aspects of the caring role, rather than personal fear of death, that form the source of much of students’ anxiety.
Delivering multiprofessional web-based psychosocial education: the lessons learnt
Authors: Kinghorn Shaun
Published: May 2014

Psychosocial care is one component of high-quality cancer/palliative care. The development of the internet has revolutionized the way we conduct business, shop, communicate with each other, and seek information. This article reports on the delivery of a web-based 16-week module: ‘The management of cancer: psychosocial perspectives’. Twenty-nine students represented by a wide range of members of the multidisciplinary team registered for this module. Electronic-learning programmes are noted for high attrition rates, but, in this delivery, attrition rates and assessment performance were compatible with face-to-face programmes of learning. The delivery of this module indicates that there is scope for helping multiprofessional staff develop their knowledge and skills in psychosocial care.
The staging of a hospice arts and crafts exhibition in the UK
Authors: Sarginson Andrea
Published: May 2014

The use of arts in hospices is now well established. However, the voluntary nature of much hospice work in England encourages most regular creative activities to be provided by volunteers with minimal financial support. This article looks at how a successful arts and crafts exhibition for a hospice community was staged by a volunteer arts worker, helped by art and design students from the local university. It was not intended that the exhibition should be a research project; however, it became clear that to learn more about arts practice within a hospice environment, it would need to be appraised in some way. The project leader (and author) adopted an approach which reflected on the responses of people involved in the preparation and staging of the exhibition.
Going on a journey: understanding palliative care nursing
Authors: Barnard Alan , Hollingum Christine , Hartfiel Bernadette
Published: May 2014

Aim: To describe the qualitatively different ways a group of Australian nurses, understood their experience of being a palliative care nurse.

Design: The research approach chosen was phenomenography. Fifteen nurses caring for people in a specialist palliative care unit in regional Australia were interviewed and transcribed interview data were analysed in order to identify understanding of experience.

Findings: The research identified and described five ways of understanding the experience of being a palliative care nurse: doing everything you can; developing closeness; working as a team; creating meaning about life; and maintaining myself.

Conclusion: The group of palliative care nurses involved in this research understood their experience as journeying with their patients through the final phases of the person’s life. The journey involved the patient, his/her family and members of the healthcare team. The journey was described further as a process of personal development which influenced how nurses construct meaning about life and maintain a sense of self. The experiences described reveal a great deal about palliative care nursing and provide useful knowledge and insights to assist practitioners, managers and educators.
Dying in late old age: the final frontier?
Authors: Payne Sheila , Froggatt Katherine
Published: May 2014

The population of the world is ageing. We tend to think of this as a public health issue for developed countries, but in the next 50 years it will become a concern for health and social care services in many developing countries (Davies and Higginson, 2004). The proportion of people over 60 years will rise from 10% to 22% in 2050, with about 33% of people in developed countries over 60 years (CancerStats, 2005a).
Symptoms suffered by life-limited children that cause anxiety to UK children’s hospice staff
Authors: McCluggage Heather-Louise , Elborn J Stuart
Published: May 2014

Background: Very little is published about the symptom profile of children with life-limiting illnesses other than cancer.

Method: A postal questionnaire was sent to children’s hospice staff who were asked to identify symptoms experienced by life-limited children which caused them anxiety.

Results: Staff in 23 hospices were sent questionnaires. Twenty eight questionnaires were returned from 10 doctors and 18 nurses. Just under half of the hospices contacted were represented. The staff were very experienced but had significant anxieties about treating some of

Aims: This study aimed to identify the symptoms which cause anxiety to staff working in children’s hospices. More than 70% of all staff groups felt that identifying the symptom correctly caused more anxiety than treating identified symptoms.

For doctors the top five symptom problems were, seizure control, spasms, pain assessment, unidentified distress and vomiting.

For nurses the main concerns were the non-verbal child in distress, psychiatric or psychological problems, assessing pain, seizures, pain management, vomiting.

Conclusions: Doctors and nurses perceive seizures, pain management, and vomiting as the most troublesome symptoms for children with life-limiting conditions. Further research is needed into symptom management in this area.
Treatment options in end-of-life care: the role of palliative chemotherapy
Authors: McCall Kathyrn , Johnston Bridget
Published: May 2014

Advances in medical science and technology, combined with the primary goal of medical care to restore or maintain health as far as possible, often result in the transition from active to palliative care being blurred. Treatment choices are limited in advanced disease; but paradoxically, which therapy to choose is becoming an increasingly complex decision (Weissman, 2004). The role of chemotherapy in this phase remains a controversial subject, but data are emerging to show that an increasing number of patients nearing the end of life are receiving chemotherapy (Matsuyama et al, 2006), and there is a mounting body of evidence for its use in symptom palliation (Cullen, 2003; Bowcock et al, 2004; Davis, 2005). Therefore, the traditional view that medical oncology and palliative care are two distinct disciplines may need to be modified.
Book Reviews
Authors: Lansdell John , Starnes Gina
Published: May 2014

This book is a valuable resource for anyone who teaches palliative care, whatever the nature of their role or discipline. It draws on a diverse range of experience, offering a variety of perspectives to inform and guide thinking in developing both individual sessions and wider curricula.
Spirituality in palliative care: what language do we need? Learning from pastoral care
Authors: Byrne Marjory
Published: May 2014

This article is a sequel to Spirituality in palliative care: what language do we need? (Byrne, 2002). It looks at the language of pastoral care, its place in palliative settings and how it is regarded by patients and carers. Spirituality and spiritual need is multifaceted, and the various beliefs regarding the concept of spirituality and the spiritual needs of terminally ill patients are appraised, and the methods of spiritual assessment reviewed. The role of the chaplain in spiritual care is also assessed, and an ability to move beyond the boundaries of their own denominational position addressed. Several components of the language of pastoral care are identified.
Management of dysphagia in advanced oropharyngeal cancer
Authors: Penner Jamie L , McClement Susan E , Sawatzky Jo-Ann V
Published: May 2014

Individuals with advanced oropharyngeal cancer often experience dysphagia as a result of their illness and its treatment. Research consistently demonstrates that dysphagia and difficulty with oral intake have many implications, including a negative impact on quality of life. Nurses are in a key position to provide support and initiate appropriate interventions for individuals with dysphagia. Using the Human Response to Illness model (Mitchell et al, 1991) as an organising framework, this paper presents a critical review of the empirical literature regarding dysphagia in individuals with advanced oropharyngeal cancer that will: i) provide the reader with a comprehensive understanding of dysphagia; ii) identify current gaps in our knowledge; and iii) establish the foundation for appropriate evidence-based interventions to optimise functioning and quality of life in this patient population.
Assessment and monitoring of nutritional status in patients with advanced cancer: part 1
Authors: Dewey Ann , Dean Taraneh
Published: May 2014

Using a qualitative approach, this study set out to explore nurses’ management of patients with advanced cancer, weight loss and eating-associated problems.

Extreme weight loss is commonly seen in patients with incurable solid tumour cancer and, to date, it has proved difficult to manage successfully. Currently, little is known about how nurses (often directly involved in the delivery of palliative care) assess weight loss and nutritional status in everyday practice in order to provide appropriate support.

In this study, 14 semi-structured interviews were conducted with nurses from both hospital and community settings. The findings revealed that many nurses did not routinely provide early identification and assessment of nutritional status including weight loss, nor did they continue to monitor the patient’s progress or deterioration. Many nurses were reluctant to initiate conversations with cancer patients about weight loss, but instead waited for patients and relatives to raise their concerns. As a result, it is likely that informal assessment may have resulted in the reactive style of nutritional management seen. However, nurses interviewed received limited training, but were keen to learn more about nutritional assessment and management.
Coping strategies, emotional outcomes and spiritual quality of life in palliative care nurses
Authors: Desbiens Jean-François , Fillion Lise
Published: May 2014

It is in accompanying the dying that palliative care nurses say they find meaning in their work. To further explore this phenomenon, consideration of coping strategies is proposed.

The main objective of this correlational study was to describe the association between coping strategies (using a revised version of the COPE scale (Carver et al, 1999)), emotional outcomes (distress and vigour; profile of mood states (POMS)), and spiritual quality of life (using the Functional Assessment of Chronic Illness Therapy – Spiritual Wellbeing Scale (FACIT-sp)). A sample of 120 nurses providing palliative care in acute care hospitals and the community in Quebec was included. Positive reinterpretation (β=.27; p<.01) and turning to religion (β=.33; p<.001), two strategies related to meaning-making coping and disengagement (β=–.19; p<.05), were the best predictors, accounting for 22% of variance of spiritual quality of life.

These findings are consistent with recent studies and highlight the importance of meaning-making strategies in psychological adjustment to bereavement for palliative care nurses.
The lived experience of closeness in partners of cancer patients in the home care setting
Authors: Palm Inger , Friedrichsen Maria
Published: May 2014

At present there are few data available on the experiences of closeness in partners of patients with advanced cancer. The aim of this study was to explore the lived experience of closeness in partners of patients with advanced cancer in palliative home care. Ten partners of patients admitted to a palliative, hospital-based home care unit participated in this study. Tape-recorded interviews were conducted and Giorgi’s phenomenological analysis was used. Three themes emerged: dimensions of closeness, such as togetherness, sharing and daily concern; prerequisites for closeness; and obstacles that hindered closeness. In essence, closeness was described as a changing process that was expected to end. This study has revealed the importance of closeness in the partners of patients with advanced cancer. Experiencing closeness is of great importance when the disease is no longer curable and time is limited. Partners need professional help to facilitate this experience.
A question of evidence: decision-making in palliative care nursing
Authors: Murray Mary Ann
Published: May 2014

Nurses are urged to integrate research evidence into their practice. Current perspectives of evidence-based practice promote a hierarchy of empirical evidence. Notwithstanding the contribution of empirical knowledge, this approach constrains our understanding of the value and contribution of other forms of knowledge. Shifting to a model of ‘evidence informed practice’, where multiple forms of knowledge are considered and valued, may better reflect the complexities of end-of-life care and offer a fuller understanding of palliative care nursing best practice.
Attitudes to death and dying in China
Authors: Becker Robert
Published: May 2014

The apartment was small and cramped, with possessions filling every available space. In the corner of the living room was a bed, facing the window. He turned and greeted us with a quizzical look; his mother, meanwhile, was busying herself finding drinks for her honoured guests. He was just 22 years old, and the large cancerous tumour on his left thigh had spread to numerous parts of his body. Despite a regimen of modern analgesia, it was clear that he was still in considerable pain. His expression, full of resignation and despair, suggested to us that he knew both his diagnosis and prognosis and his mother confirmed as such. She was grateful for the support offered from the local palliative care team, because, without it, his pain had been unbearable and they spent time listening to her worries. Family members had rallied round, as is the tradition in that country, and contributed what they could to help pay for the traditional medicines she dispensed to him throughout the day – medicines that gave some relief from the worst of the difficult symptoms.
Learn Now; Live Well: an educational programme for caregivers
Authors: White Kate , D’Abrew Natalie , Auret Kirsten , Graham Nina , Duggan Geoff
Published: May 2014

Aim: To evaluate the effectiveness of the Learn Now; Live Well (LNLW) educational programme on enhancing the knowledge and support of caregivers living with a life-threatening illness.

Design: A combined summative and formative evaluation design was used. Both quantitative and qualitative data were collected using a questionnaire with a five-point response scale of strongly agree to strongly disagree and semi-structured interviews.

Sample: Two hundred and five participants attended the LNLW programme, interviews were held with a selection of carers and key informants from organizations and the inpatient setting.

Results: At completion of the programme, a substantial reduction in care isolation, and increase in care confidence and knowledge was evident. The findings from the interviews indicated strong support, reassurance and having a skilled facilitator as the fundamental components for the success of the programme.

Conclusion: The LNLW programme successfully improved carers’ access to support across a range of sectors, increasing confidence through education and support.
Anticipatory mourning: processes of expected loss in palliative care
Authors: Clukey Lory
Published: May 2014

This qualitative study explored the retrospective perceptions of the anticipatory mourning experience of caregivers who had not received hospice services. Data revealed five major processes that were consistently described by informants: realization; caretaking; presence; finding meaning; and transitioning. Characteristics of each of these processes are described. Study informants provided information about what was helpful to them. The implications for health care providers include: an awareness of changed family roles and relationship attachments that can cause strain on family systems; familiarity with the complex demands on caregivers and their need for accurate information, anticipatory guidance and support resources; professional expertise especially in regard to education about what to expect; a caring presence; and pain and symptom management.
Staff opinions about the components of a good death in long-term care
Authors: Gibson Maggie C , Gutmanis Iris , Clarke Heather , Wiltshire Deb , Feron Andrew , Gorman Eunice
Published: May 2014

Aim: The aim of this study was to identify differences of opinion about the relative importance of different components of a good death among care providers in a long-term care home serving Canadian war veterans.

Methods: The Concept of a Good Death scale (Swartz et al, 2003), with slight adaptations to fit the long-term care context, was made available to all staff. Responses were accepted for a one-month period.

Findings: Survey return rate was 30.4%. There was a majority (greater than 50%) opinion that 12 of the 20 items were essential or important to a good death, and that three items were not necessary: ‘that death is sudden and unexpected’ (64.5%), ‘that there be control of bodily functions to the end’ (61.8%) and ‘that there be mental alertness to the end’ (55.3%). There was not a majority opinion on the five remaining items: ‘that the dying period be short’, ‘that death occurs naturally without technical equipment’, ‘that the person lived until a key event’, ‘that the ability to communicate be present until death’, and ‘that death occurs during sleep’.

Conclusions: Detailed analysis of survey results identified differences of opinion that could have implications for consistency and quality of care. The findings suggest ways in which the unique characteristics of the long-term care environment and population influence opinions about the components of a good death.
Theories of hope: are they relevant for palliative care nurses and their practice?
Authors: Penz Kelly
Published: May 2014

Hope is a multidimensional construct that is gaining recognition in nursing theory, research and practice. It is evident that there are few hope theories that are specific to the work and lives of palliative care nurses. As such, little attention has been paid to analyzing the relevance of specific theories to palliative nursing practice. To address these issues, the objectives of this article are: 1) to introduce and critique selected theories of hope with evaluation of their relevance to palliative care nurses; and 2) to identify the conceptual gaps in knowledge that emerged through the critique process, and suggest future research directions for the development of hope theory in palliative nursing practice. An exploration into the dimensions of palliative care nurses’ hope and the potential influence of their hope on the care they provide may have future implications for their quality of life and the quality of life of their patients.
Dire deadlines: coping with dysfunctional family dynamicsin an end-of-life care setting
Authors: Holst Lone , Lundgren Maren , Olsen Lutte , Ishøy Torben
Published: May 2014

Working in a hospice and being able to focus on individualized, specialized end-of-life care is a privilege for the hospice staff member. However, it also presents the hospice staff with unique challenges. This descriptive study is based upon two cases from an end-of-life care setting in Denmark, where dysfunctional family dynamics presented added challenges to the staff members in their efforts to provide optimal palliative care. The hospice triad – the patient, the staff member and the family member – forms the basis for communication and intervention in a hospice. Higher expectations and demands of younger, more well-informed patients and family members challenge hospice staff in terms of information and communication when planning for care. The inherent risk factors of working with patients in the terminal phase of life become a focal point in the prevention of the development of compassion fatigue among staff members. A series of coping strategies to more optimally manage dysfunctional families in a setting where time is of the essence are then presented in an effort to empower the hospice team, to prevent splitting among staff members, and to improve quality of care.
Flemish palliative care nurses’ attitudes toward euthanasia: a quantitative study
Authors: Gielen Joris , van den Branden Stef , van Iersel Trudie , Broeckaert Bert
Published: May 2014

Aim: To adequately measure the attitudes of Flemish palliative care nurses toward euthanasia, and assess the relationship between these attitudes and demographic factors and the (perceived) influence of experience in palliative care on death anxiety. Method: An anonymous questionnaire was sent to all nurses (n=589) employed in palliative care in Flanders, Belgium: 70.5% of the nurses (n=415) responded. Results: A majority of the nurses supported the Belgian law regulating euthanasia but also believed that most euthanasia requests disappear as soon as a patient experiences the benefits of good palliative care. Three clusters were discovered: staunch advocates of euthanasia (150 nurses, 41.1%); moderate advocates of euthanasia (135 nurses, 37%); and (moderate) opponents of euthanasia (80 nurses, 21.9%). An absolute opposition between advocates and opponents of euthanasia was not observed. A statistically significant relationship was found between the euthanasia clusters and years of experience in palliative care, and (perceived) influence of experience in palliative care on anxiety when a patient dies. Conclusions: Flemish palliative care nurses’ attitudes toward euthanasia are nuanced and contextual. By indicating that most euthanasia requests disappear as soon as a patient experiences the benefits of good palliative care, the nurses applied a ‘palliative filter’ a standard procedure in the case of a euthanasia request.
Learning from each other: cross-cultural insights on palliative care in Indian and Australian regions
Authors: McGrath Pam , Holewa Hamish , Koilparampil Thomas , Koshy Cherian , George Shobha
Published: May 2014

This article presents the findings of a cross-cultural research project that explored similarities and differences between palliative care service provision in Kerala, India and South-East Queensland, Australia, to inform a process of mutual learning for service development.

Three major points of difference that can inform this process of mutual learning were identified: 1) an understanding of the significance of honesty in information-giving to the patient, 2) recognition of the importance of palliative care specialists providing education to mainstream health professionals, and 3) appreciation of the need for palliative care to be cognizant of the socio-economic impact of dying-especially for families experiencing poverty-by embracing strategies for financial and material support. The findings highlight the effectiveness of a cross-cultural collaboration between health professionals and researchers in South-East Queensland, Australia and Kerala, India.
Methylnaltrexone: a subcutaneous treatment for opioid-induced constipation in palliative care patients
Authors: Kyle Gaye
Published: May 2014

Opioid-induced constipation is common in palliative care and causes considerable distress to patients taking opioids. Opioid-induced constipation can be difficult to manage with conventional laxatives, often requiring invasive rectal interventions. A unique bowel intervention linked specifically to opioid-induced constipation in the form of a subcutaneous injection is now available for the management of opioid-induced constipation. This article will examine all aspects of opioid-induced constipation with particular reference to this new management option, methylnaltrexone bromide (Relistor).
Exploring the causes, assessment and management of constipation in palliative care
Authors: Brown Elizabeth , Henderson Amanda , McDonagh Aislinn
Published: May 2014

Constipation is one of the most common problems in patients receiving palliative care, often having a profound effect on their quality of life. Its management has a significant impact on healthcare provision in terms of cost and nursing time. Nurses are well placed to assess and manage constipation and this article seeks to aid in the decision-making process. The causes, assessment and management of constipation, from prophylaxis to new pharmacological developments, will be explored in a pragmatic approach.
Understanding best practice within nurse intershift handover: what suits palliative care?
Authors: Messam Kerry , Pettifer Annie
Published: May 2014

Following identification of the limitation of nurse intershift handover within a specialist palliative care unit, a review of the research literature is undertaken. The aim is to identify and appraise what is known about best practice within nurse intershift handover and evaluate the implications for practice within a specialist palliative care inpatient unit. The retrieval of literature identified 19 pertinent research papers which were critically analyzed. Three main themes emerged within the literature: purpose; type; and content of handover. Only two studies had been carried out within a generalist palliative care context; however, five sub-categories emerged that may be significant in meeting the demands of specialist palliative nursing. These were: clinical decision-making; staff support; maintaining confidentiality while handling sensitive information; patient involvement; and type of information exchange. All themes are presented within this article. The literature review suggests that traditional verbal nursing handover may be the most advantageous handover method within inpatient specialist palliative care, though attention to structure and focus is vital.
Family experiences of hospital end-of-life care in Switzerland: An interpretive phenomenological study
Authors: Spichiger Elisabeth
Published: May 2014

Aim: Experiences of family members of terminally ill patients with hospital end-of-life care were explored. The study is part of a larger study that investigated patients’ and families’ experiences; this study describes family members’ unique experiences. Design: A qualitative method, interpretive phenomenology, was used. Sample and setting: Ten closest family members of patients were recruited in one Swiss tertiary care hospital. Methods: Data were mainly collected through interviews with family members. Findings: Family members suffered greatly when they witnessed patients’ suffering. They experienced different approaches by professionals: non-recognition; a rather passive but welcoming attitude; active care for the family. The patient’s wellbeing had priority for families; they cared for patients by providing company and being advocates or becoming co-caregivers. Family members experienced consequences of accompanying a terminally ill patient: they felt exhausted and their everyday taken-for-granted world was changed. Caring for the patient had become the only priority. Conclusion: Nurses can best improve families’ experiences of hospital end-of-life care when they are aware of families’ priorities and take excellent care of the patient first, but, in addition, recognize family members, approach them actively and integrate them as co-caregivers as much as wished by patient and family member.
Quality-of-life assessment in a palliative care setting in Germany: An outcome evaluation
Authors: Jocham Hubert R , Dassen Theo , Widdershoven Guy , Halfens Ruud JG
Published: May 2014

Quality-of-life (QoL) assessment is crucial for the evaluation of a palliative care outcome. This article investigates the applicability of the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30) on a German sample of terminally ill cancer patients receiving palliative care in different settings. Patients were randomly selected in 10 palliative homecare services and one palliative care unit in a general hospital and ‘evaluated’ among the consecutively ‘registered’ patients. The random sample of patients (n = 121) was representative of the general patient population cared for by the palliative care services in Germany. The EORTC QLQ-C30 was administered to the terminally ill cancer patients on their first day in hospital or upon their first contact with the specialized palliative homecare team. The clinical variable assessed was the Karnofsky performance status. The questionnaire was well accepted in the present patient population. In addition, the questionnaire was found to be useful in detecting the effectiveness of palliative treatment over a period of time. This study shows that QoL measures can be used to assess the outcome in palliative care.
A review of paediatric palliative care nursing education in Latin America
Authors: Bishop Kendra , Mele Nancy , Koppmann María José Errázuriz , Day Sara
Published: May 2014

Around the world, children suffering from catastrophic illnesses need quality palliative nursing care. However, unstable economic, social, and political structures in developing nations have delayed the advancement of paediatric palliative care programs in some regions. This systematic literature review primarily focuses on paediatric palliative care in Latin American countries. The aim is to identify existing support structures and possible barriers to paediatric palliative care nursing education. This review provides the background for a proposed collaborative paediatric palliative care nursing education initiative between a children’s research hospital in the United States and a Chilean partner site.
Palliative respite services using nursing staff reduces hospitalization of patients and improves acceptance among carers
Authors: Barrett Melissa , Wheatland Belynda , Haselby Pam , Larson Ann , Kristjanson Linda , Whyatt David
Published: May 2014

People caring for palliative patients at home identify respite care as a key need. However, caregiver concern over the skill level of respite care providers has been cited as a common barrier to uptake and satisfaction with respite services. This study implemented and evaluated an at-home palliative care respite service delivered by enrolled nurses, known by various names in the UK. It was found that the program reduced hospitalizations of palliative patients by 80% and potentially increased the likelihood that they would die at home.
The Liverpool Care Pathway: ‘Tick box’ approach not encouraged
Authors: Chapman Simon , Aldridge Heather
Published: May 2014

The UK’s Daily Telegraph published a letter criticizing the Liverpool Care Pathway (LCP) on 3 September, and accompanied it with the front page headlines ‘Sentenced to death on the NHS’ and ‘Palliative care is in crisis, warn leading doctors.’ Further articles expressing concerns about the LCP have appeared in the days since then. The nub of the criticisms is a fear that the LCP encourages ‘a tick box approach to the management of death’, leading to the premature withholding of artificial nutrition and hydration accompanied by continuous deep sedation. To put it more crudely: that patients are being dehydrated and sedated to a premature death.
Exploring the needs of hospice staff supporting people with an intellectual disability: a UK perspective
Authors: Cartlidge Deborah , Read Sue
Published: May 2014

As the English National Health Service (NHS) celebrates its 60th anniversary, the challenges of providing equal access to health services for all remain numerous and complex. For certain groups in society, accessing appropriate, quality health care may be fraught with difficulties. While people with an intellectual disability (ID) may have additional health-care needs, they often struggle to acquire the health care they require, particularly when they have a life-limiting condition. This article introduces a qualitative research study conducted in a North Staffordshire hospice. This study explored the hospice staff’s perceptions of their own professional needs while caring for a person with an ID who required palliative or terminal care within the hospice setting. This article will define the population involved, explore the literature which provides a contextual backdrop against which the research sits, introduce the methods and procedures used, and describe and discuss these findings in relation to the palliative care provision for people with an ID from a hospice perspective. It concludes by recognizing that appropriate education and training remain essential preparation for hospice workers when caring for someone with an ID. This article should be of interest to clinicians in both palliative care and ID services, to managers and providers of such services, to those educators keen to maintain contemporary palliative care practice, and to researchers.
Using syringe drivers in palliative care within a rural, community setting: capturing the whole experience
Authors: Cruickshank Susanne , Adamson Elizabeth , Logan Janice , Brackenridge Katie
Published: May 2014

The aim of this research was to understand how the introduction of a syringe driver, which is considered routine practice in many palliative care settings, impacted on patients, carers and community nurses within a rural, community setting. A phenomenological study was conducted exploring the experiences from the perspective of patients (n=4), carers (n=9) and community nurses (n=12) when syringe drivers are used at home. We interviewed patients and carers in their own homes and conducted two focus groups with community nurses who had an interest in palliative care but were not specialists. Despite the wide use of syringe drivers within palliative care, our study found their use among community nurses, particularly in rural areas can be variable with frequent time lapses between a nurse’s exposure, impacting on both their technical abilities and knowledge. In-depth interviews with patients revealed few barriers to their use, but carers clearly identified areas where their expectations and experiences differed and where more information setting realistic goals of care would have been helpful. The authors conclude that although nurses require competencies related to syringe drivers, they also need an in-depth knowledge of the actions of the drugs and the likely changes which occur physiologically as patients approach the end of their life. This will ensure accurate information is delivered, and facilitate meaningful dialogue.
Community nurses’ perceptions of a good death: a qualitative exploratory study
Authors: Griggs Chloe
Published: May 2014

Aims: This study sought to gain an insight into perceptions of a ‘good death’ among community nurses, and to identify its central components. By understanding these factors, it was hoped that common difficulties could be identified, enabling recommendations to be made to enhance patient care and reduce the pressures to which nurses are exposed. Method and sample: This qualitative exploratory study relied on semi-structured interviews, incorporating the critical incident technique to elicit retrospective accounts of experiences of palliative care and a good death. Data was obtained from a purposive sample of 17 community nurses, working in a single primary care trust in south-east England. Results: The participants identified eight key themes in supporting a good death: symptom control, patient choice, honesty, spirituality, interprofessional relationships, effective preparation and organization and provision of seamless care. When these are in place, a good death is possible. Factors such as lack of necessary medication/resources, unsuccessful interprofessional relationships and lack of teamwork were significant determinants of less successful care. The provision of seamless care was an important criterion for success. Conclusions: In identifying the contributory factors, this study has shown that a good death can be provided in the community, although it has also revealed many challenges associated with such care. While it could be argued that due to the unpredictability of death, such challenges may always be a threat to effective care anticipatory planning and a recognition that patients need and are entitled to specialist care many of these difficulties could be overcome.
A baseline review of medication provided to older people in nursing care homes in the last month of life
Authors: Kinley Julie , Hockley Jo
Published: May 2014

Aim: Increasing numbers of older people are dying in the nursing care home setting. Little is known about the medication needs of the very old and frail in the last weeks of life and how they might differ from a model of care developed for people dying from cancer. Method: A baseline review of medication in the last month of life was undertaken to try and establish current practice of prescribing for this population. The notes of 48 deceased residents in seven nursing care homes were examined, alongside a questionnaire sent to 67 trained nurses. Results: Subcutaneous prescribing only occurred where specialist palliative care teams had been involved with the residents’ care. Syringe drivers were used in 23% of cases; however, only three residents required a syringe driver for more than a day and a half. Nurses’ confidence and competence in setting up syringe drivers was varied. Conclusions: The use of syringe drivers may not be the most appropriate way of managing symptoms during the dying phase in very frail and old people.
Reclaiming truly dignifed care
Authors: Johnston Bridget
Published: May 2014

A recent article in the Times in the UK caused me to reflect on why personal and intimate tasks such as washing patients, and particularly cleaning bodily fluids, are relegated to the most junior members of staff, usually care assistants or students, and not qualified nurses or other health professionals. The journalist Melanie Reid recently fell off a horse and broke her neck and back. She is writing a column from her hospital bed in Scotland where she is in the process of rehabilitation (Reid, 2010).