bluuebunny/crossref_metadata_2025 huggingface dataset:
Communication in the development of culturally competent palliative care services in the UK: a case study
Authors: Randhawa Gurch , Owens Alastair , Fitches Rah , Khan Zafar
Published: May 2014

Research suggests that many minority ethnic patients who receive palliative care in the UK are satisfied with the service they are given. However, various studies have revealed that minority ethnic groups’ experiences of care are far from perfect. The most significant problem for these patients centres on communication. This article presents some results from an exploratory study, commissioned by Luton Health Action Zone, to explore the role of communication in delivering effective palliative care services to South Asians living in Luton. Overall, it was found that the services provided are, in most cases, valued and seen as being effective. However, as the service providers who were interviewed readily recognized, there were areas where improvements could be made. The main issues were found to be the need to inform South Asian populations of the availability of palliative care services and the need to improve communication between patients and service providers. This article describes the communication problems that service providers and users face. It also identifies possible policy improvements aimed at developing the ‘cultural competency’ of services.
An introduction to the Micrel Micropump MP Daily portable syringe driver
Authors: Groves Karen E
Published: May 2014

In this article the author describes the Micrel Micropump MP Daily (MP Daily) portable syringe driver. This follows the author’s experience of a 4-month pilot of the device by an inpatient palliative care unit. Portable syringe drivers are commonly used to deliver continuous subcutaneous infusions in palliative care situations. Those in current use are not without problems and serious adverse events have occasionally been reported, mainly resulting from confusion between models. The MP Daily syringe driver addresses some of these issues while remaining small, lightweight and inexpensive, with a long battery life and fitting into the pocket of a shirt or pyjama jacket. Improvements over current models include an on/off button, the absence of facilities to set a zero rate or change the rate once the syringe driver is running, and the absence of a boost button. In addition, there are improved alarms, a message display system and a configuration menu. Although confusion remains a problem, and the ideal has not yet been reached, the MP Daily goes some considerable way towards reducing risks and opportunities for human error.
Qualitative research in palliative care 1990–1999: a descriptive review
Authors: Froggatt Katherine A , Field David , Bailey Chris , Krishnasamy Meinir
Published: May 2014

A collaborative, evaluative review of qualitative research in palliative care published between 1990 and 1999 has been conducted. Nearly 30000 articles in 48 journals from specialist palliative care, oncology, death studies, medicine, nursing, gerontology, health and the social sciences were examined. From these journals, 138 articles (0.5%) reporting qualitative research with a focus on palliative care in the context of death, dying or bereavement were identified. These articles were reviewed using a proforma designed by the group. This article describes the review process, and the following findings: the distribution of different forms of qualitative research in palliative care; the location of such papers; the focus of the research; and the research methodology and methods adopted.
Difficulties in identifying distress and its causes in people with severe communication problems
Authors: Regnard Claud , Mathews Dorothy , Gibson Lynn , Clarke Charlotte
Published: May 2014

In 1999 a palliative care team was established for adults with severe learning disabilities at Northgate Hospital in the North East of England. It was given NHS Beacon status in 2001 and now provides specialist advice to patients with learning disabilities who have a life-limiting or life-threatening illness through cancer, dementia or other conditions. This partnership between learning disability and palliative care teams has produced new views of the issues faced by this group of people. Through its work with caring for such patients, one of the key issues which has arisen is identifying distress and its causes.
Evaluating the Navigate Care Model: clinical palliative care pathways based on anticipated care outcomes
Authors: Nightingale Ellen , Kristjanson Linda J , Toye Christine
Published: May 2014

The Navigate Care Model (NCM) specifies clinical pathway assignment for hospice patients based on the anticipated outcomes of death, discharge home, or discharge into residential care. This study, set in a free-standing, inpatient hospice, evaluated the effects of NCM implementation on 338 patients, 154 family members, and the organization, including 49 staff. Accuracy of pathway assignment on admission was also assessed. The results indicate that patients’ symptoms were managed as well or better than previously, as compared with 1998 data. Discharged patients reported being highly satisfied with care and there were fewer readmissions. Families reported greater satisfaction with care than those surveyed previously, as compared with 1999 data. Staff reported initial negative effects but elected to retain a refined version of the model after the study. Pathway assignments on admission were correct 64% of the time, 92% correct when assignment was for terminal care. Clinical pathways based upon the expected outcomes of death or discharge appear to offer benefits for patients and families.
Use of a pro forma and overhead projector to improve multidisciplinary team communication
Authors: Oliver David , Haggarty Pat
Published: May 2014

Good communication among the members of the multi-disciplinary team is essential in the provision of specialist palliative care. It allows the patient’s and family’s care to be coordinated and all team members to be involved in planning care. In multidisciplinary team meetings at the Wisdom Hospice in the UK, a pro forma has been used with an overhead projector to show details of the patient, their family, history and problems. An audit of team members’ views found the pro forma to be effective and useful in encouraging interdisciplinary working.
Reflections on clinical audit in palliative care following an attempt to audit urinary catheterization
Authors: Gannon Craig
Published: May 2014

Audit has a high profile within palliative care quality initiatives. However, there are numerous potential pitfalls to auditing. We had hoped to perform a multicentred multiprofessional audit on urinary catheterization of hospice patients. Unexpectedly, the problems encountered highlighted numerous flaws in our approach to audit. An initial standard-setting pilot study, using a prospective observational methodology, generated results for 25 patients. The audit cycle was not pursued, as the data and the process did not appear valid. Conversely there were valuable lessons from reflecting on our mistakes and reviewing historical ‘wisdom’. For example, audit’s interface with research can easily be misunderstood and the difficulties of audit in palliative care can be under-estimated. Particularly concerning was the potential for harm from insufficient rigour within audit processes, in allowing invalid data to influence practice. Conversely, despite risks, robust studies within audit may inform the limited palliative care research base.
Group supervision to support competency development in palliative care in Norway
Authors: Landmark Bjørg , Wahl Astrid K , Bøhler Ann
Published: May 2014

Aim To develop and evaluate a model of supervision created to provide continuous support throughout a 2-year postgraduate education programme.

Methods Twenty five students attending the first 2-year postgraduate course in palliative care at the University College, Buskerud, Norway took part in a prospective study. A questionnaire was administered on five occasions: on commencement of studies, after 6 months, 12 months, 18 months and at the end of the programme. Student statements were analysed using methods of qualitative content analysis.

Results Students’ appreciation of the value of supervision increased from the first to the last recording. Reflection and dynamic dialogue during group supervision were reported to be well-suited as methods of support in the development of insight into palliative care, integration of theory and practice, and development of skills.

Conclusion Students stated that supervision confirmed knowledge, gave meaning and increased self-awareness in palliative care.
UK forum annual conference: supporting palliative care around the world
Authors: Laughton Ruth , Becker Robert
Published: May 2014

The UK forum annual conference on 3 November 2004 saw a gathering of passionate advocates for palliative care from around the world. The forum is a UK network of organizations and individuals involved in hospice and palliative care in poorer countries. The aim of the forum is to share experience and information, e.g. through training, help with twinning and through grants.
Changing our view of the family
Authors: Becker Robert
Published: May 2014

The notion of ‘family’ is as old as humanity itself and has been the subject of countless research studies. Many of the problems of modern living have been attributed to the changing nature of family life. Indeed, many a politician has staked his or her future on a return to so-called traditional family values as the panacea for all society’s ills. This is a risky strategy, however, if we consider the huge diversity of what constitutes family today.
Decision support: helping patients and families to find a balance at the end of life
Authors: Murray Mary Ann , Miller Toba , Fiset Valerie , O’Connor Annette , Jacobsen Mary Jane
Published: May 2014

Terminally ill patients and their families face many decisions at the end of life that can sometimes be overwhelming. Nurses play a key role in providing decision support so that patients and their families can make timely decisions about their health care that reflect their individual needs and circumstances. The Ottawa Decision Support Framework can help nurses to assess patients’ decision-making needs, provide tailored decision support and evaluate the effect of their interventions. The theoretical underpinnings of the model and its implications for palliative care clinical practice are discussed.
Conferences for researchers - why meet?
Authors: O’Connor Margaret
Published: May 2014

Attendance at two very different conferences in quick succession has provoked some reflection on their value for researchers. In considering whether to attend, one ought to ask some basic questions.
Inspiration and education: the conference convert
Authors: Kavanagh Maria
Published: May 2014

As a lecturer in palliative care, the IJPN/Palliative Medicine conference appeared to offer a little of everything: the challenge of integrating national and local initiatives; the potential for new knowledge and skills; the ability to network; and the increasing capability to change and improve palliative care provision at a local level. I was eager to meet other people with a passion for having an impact on the care of dying people and their families through education.
Whakaata ikei runga manaaki - reflection on caring
Authors: Falleni Patricia
Published: May 2014

There are well-documented inequalities between the health status of Maori and other New Zealanders (New Zealand Ministry of Health, 2001). As a district palliative care nurse for the Nelson Region Hospice I have had the opportunity to observe many different cultures (Nelson is a provincial town at the top of the South Island of New Zealand). Although this comment piece focuses on the Maori, many of the concepts are applicable to indigenous communities worldwide. By reflecting on my experiences as a Maori nurse I hope to highlight some of the issues facing this minority group. I also wish to share how an understanding of my own culture has helped in my professional life.
Handling unexpected distress on the telephone: the development of interdisciplinary training
Authors: Saunders Jackie
Published: May 2014

St Nicholas’ Hospice recognized that its non-clinical staff needed support and guidance regarding the management of particularly difficult telephone conversations. It is understandable that patients and family members who are experiencing extreme uncertainty, fear and worry might express anger and despair, however, non-clinical staff were troubled by having to handle such raw emotions on the telephone. Despite palliative care excelling at counselling skills and training in breaking bad news, no material or courses exist to help these staff handle unanticipated distress on the telephone. A training session was established and, unexpectedly, many clinical staff enrolled. Although a formal in-depth evaluation did not take place, participant feedback suggested it was equally beneficial to non-clinical and clinical staff. A key element of the apparent success was the interprofessional, interagency, interpersonal sharing and exchange of ideas.
Is fear of death itself a rational preoccupation?
Authors: Nyatanga Brian
Published: May 2014

The irony of fearing death is beyond comprehension, in that so many people continue to fear death, yet they also know that death is the only certainty in life (Nyatanga, 2001). The other intriguing point is how possible it is for someone to fear death when they have not experienced it themselves? In addition, one might want to ask, what exactly do people fear when they fear death? These fundamental questions are the basis for the following arguments on whether fear of death itself is rational enough for us to engage in.
Short stories
Authors: Becker Robert
Published: May 2014

I learnt very early in my teaching career that the more I used anecdotes of patient encounters to help explain ideas the more successful the lesson. The short story is a powerful strategy to enhance learning – a reflective learning tool for the author, listener or reader.
Diluent choice for subcutaneous infusion: a survey of the literature and Australian practice
Authors: Flowers Charne , McLeod Fiona
Published: May 2014

Continuous subcutaneous infusion is a method frequently used in palliative care to manage patient symptoms. To deliver the dose required, and prevent subcutaneous sites from becoming inflamed and painful, the drug is often diluted in a solution, most commonly sterile water for injection or sodium chloride. The use of sterile water for injection has been recommended for cyclizine yet beyond this example there appears to be limited clinical direction regarding diluent selection. Inconsistency or lack of guidelines can be problematic if a diluent that may enhance the effectiveness of a drug compared with an alternate is not used because of lack of knowledge or guidance. This investigation considered existing literature, drug databases and directories, and involved a survey of palliative care services to examine evidence and experience relating to diluent selection. A number of inconsistencies emerged in both the literature and practice. With the exception of five drugs for which only saline was recommended, there appeared to be an inclination to use water unless contraindicated. Given an increasing reliance on this method of symptom management, the absence of formal clinical evidence or recommendations, and ambiguity in relation to the use of diluents, highlights the need for these deficits to be addressed as quickly as possible.
Specialist palliative care nursing - an oxymoron?
Authors: Aranda Sanchia
Published: May 2014

Sanchia Aranda reflects on the strange nature of the term ‘specialist’ in relation to palliative nursing.
Palliative care nursing in New Zealand, 10 years on: diversity, complexity and resilience
Authors: Nichols Jan
Published: May 2014

It is now just over a decade since I officially joined the ranks of the hospice/palliative care workforce. During that time I have held a variety of roles: clinical charge nurse, nurse manager and executive manager, all at St Joseph’s Mercy Hospice, situated in Auckland, New Zealand’s largest city. In this comment piece I highlight some of the emerging challenges for the palliative care nursing workforce.
Resources and information available for adolescents, children and infants with life-limiting illnesses
Authors: Smyth Dion
Published: May 2014

Dion Smyth's review of the internet for palliative nursing
A global children’s hospice and palliative care website
Authors: Chambers Lizzie , McDowall Jennie , Gelb Barbara
Published: May 2014

Many children’s palliative care services internationally work in isolation and may find themselves reinventing what has been developed elsewhere. There is also an information gap about what exists and what is happening in other countries in relation to children’s hospice and palliative care. The Association for Children with Life-threatening or Terminal Conditions and Their Families (ACT), Help the Hospices (HTH) and the Association for Children’s Hospices (ACH) share a vision to start a global dialogue with colleagues from around the world involved in children’s hospice and palliative care issues.
A guide to managing the pain of treatment-related oral mucositis
Authors: Marlow Clare , Johnson Jeremy
Published: May 2014

Oral mucositis is a common complication of chemotherapy and/or radiotherapy and can be a significant problem for patients undergoing cancer treatment or bone marrow transplantation. Frequently, there is a major adverse impact on quality of life, particularly with pain and interference with oral function. In patients who are immunocompromised or debilitated, this complication can become life threatening. Currently, there is no single intervention that completely prevents or treats oral mucositis. The object of this article is to provide an overview for the nurse of the evidence for several options that may be of value in managing the pain which is often associated with this condition.
Resources that consider nutrition and hydration for the terminally ill
Authors: Smyth Dion
Published: May 2014

The physical, social and psychological significance of eating and drinking means that these essential aspects of living are imbued with a special sense of impact. When the patient is dying or otherwise incapable of receiving oral nutrition and hydration, the personal, professional, ethical and legal issues relating to the use of artificial measures pose many questions. The comfort and quality of life of patients raise many problems or points of concern for practitioners, patients and their families.
Greater collaboration needed for education, training and equitable palliative care
Authors: Fisher Jean
Published: May 2014

Every dying person has the right to palliative care, whatever his/her illness and wherever he/she may be living. The needs of families and friends must also be addressed (National Institute for Clinical Excellence (NICE), 2004).
Using the arts and humanities to support learning about loss, suffering and death
Authors: Johnson Amanda , Jackson Debra
Published: May 2014

In this article, the benefits of using the arts and humanities as teaching and learning strategies are explored. Their contribution to undergraduate nursing curricula, as a means of promoting a deeper understanding of the experiences of loss, suffering and death, cannot be undervalued. They need to be present equally alongside the physical and social sciences in nursing curricula. More than ever, is the need for all undergraduate nursing students to participate in self-reflection of these experiences, in order that they may meet the needs of their patients and families adequately, in a range of healthcare settings.
Exploring district nurses’ experience of a hospice at home service
Authors: Sullivan Kate A , McLaughlin Dorry , Hasson Felicity
Published: May 2014

Background Hospice at home (HAH) services complement the role of the district nursing team, providing 24-hour palliative home care. However, little is known about district nurses’ experience or perceptions of working alongside the HAH service.

Aim This study surveyed a representative sample of district nurses (DNs) to ascertain their experience of working alongside a HAH service.

Method A self-completed postal questionnaire comprised of 14 items was distributed to 128 DNs.

Results The evaluation found significant levels of satisfaction. All respondents indicated that they would refer a patient to the service again. However, the need for improved communication and increased awareness among DNs about the HAH service were also identified.

Conclusion The findings support the idea that a HAH service can enable patients with advanced progressive disease to be cared for at home. While the findings of this study cannot be generalized, they add to the growing body of research about HAH services in palliative care.
An integrated model of care is needed for children and young people with cancer
Authors: Scullion Fay
Published: May 2014

Children and young people are diagnosed with cancer every day. Cancer Research UK (2004) has estimated that approximately four children under the age of 15 years die each day in the UK. The recent National Institute for Health and Clinical Excellence (NICE, 2005) guidance on Improving Outcomes in Children and Young People with Cancer offers a framework that attempts to ensure a coordinated balance to service provision and allocation of resources in England and Wales.
Food and nutritional support resources for terminally ill patients
Authors: Smyth Dion
Published: May 2014

The potential benefits and possible drawbacks of providing nutritional support in palliative care settings are, as recent commentary articles suggest, contentious. What is not debatable, however, is the fact that weight loss and malnutrition are frequent features of incurable disease, resulting from various mechanical or metabolic causes. Weight loss and malnutrition can have a profound impact on the quality of life of patients and their families. This months ‘web words’ looks at sites that focus on food and nutritional support.
We need a new symptom measurement and intervention paradigm
Authors: Howell Doris
Published: May 2014

As we move into an era of performance accountability widespread use of singular numeric symptom-severity rating scales, as a standard for symptom measurement, is common. While these scales are important for population comparisons, the use of a singular measure does not reflect the multidimensional nature of symptoms, ignores distress as a distinct dimension, and does not take into account the role of interpretive processes, such as meaning of illness, on an individual’s view of symptoms.
Supportive and palliative care needs identified by multiple sclerosis patients and their families
Authors: Wollin Judy Ann , Yates Patsy M , Kristjanson Linda J
Published: May 2014

Aim: To identify the supportive needs of individuals with multiple sclerosis (MS) and their families.

Design, Sample and Method: In-depth interviews were carried out with people living with MS in the community, their family members and health professionals. The data were transcribed verbatim and recurring themes identified.

Findings: The analysis of interviews revealed four themes: disbelief and devastation; losses and forced life choices; tracking down services and information; and sadness and relief.

Conclusion: Given the duration, range of symptoms and distress often associated with MS, the findings of this research raise the important question of the role of palliative services in supporting the person with MS and his/her family.
Death and bereavement: information and support
Authors: Smyth Dion
Published: May 2014

We will all, at some stage in our lives, experience and encounter a sense of loss. In both our personal, and professional, lives we will be exposed to the internal and external processes of perceiving and responding to loss, or grieving. We grieve for the real and concrete, physical losses such as illness and death. We grieve also for the psychological or symbolic losses, such as the changing roles and responsibilities that accompany our illness. As individuals the feelings of grief and bereavement we experience are unique but we share a commonality in our possible reactions and responses to it and in the processes we pursue in re-living the pain and suffering. This months web words looks at sites that help inform us, and our practice, about this topic.
Impact on parents when a child has a progressive, life-threatening illness
Authors: Steele Rose , Davies Betty
Published: May 2014

Children with neurodegenerative, life-threatening illnesses (NLTIs) account for a significant proportion of children requiring palliative care, yet there is a lack of of research that examines families’ experiences. This grounded theory study generated a contextually-grounded description of the experiences of families living with a child who has an NLTI. Data were collected from eight families (n = 29 family members) through observations and audiotaped interviews. The impact on parents was pervasive and multidimensional. Parents faced many emotional, physical, financial, and spiritual impacts on their lives. Parents often needed help to alleviate the impact of their experience, but it was not always available in a useful manner. Despite the negative aspects, caring for the child was never viewed by parents as a burden. Fatigue was a particularly prevalent symptom that held the potential to impact on parents in multiple ways. Suggestions for practice and research are offered to assist health care professionals in providing optimal pediatric palliative care to these families.
Keeping up the pressure: pushing palliative and hospice care higher up the political agenda
Authors: Praill David
Published: May 2014

All those working in hospice and palliative care would, I expect, agree that end-of-life care needs to be higher up the political and social agenda. At Help the Hospices, the national charity for the UK hospice movement, we have been among those working hard for change. There is still a long way to go, but we believe that greater government funding and strategic planning is the way forward to bring about this change.
Website resources that consider blood and marrow donation
Authors: Smyth Dion
Published: May 2014

Blood product support, such as red cell or platelet transfusion, are vital measures in the active curative and active palliative management of symptoms associated with disease, both malignant and non-malignant. Unfortunately, in the UK, it is estimated that only 5% of the population that could donate blood (and its products) does so, and it is reasonable to assume that these figures are replicated around the world, where voluntary donations are the norm. Blood is, therefore, a limited and precious resource.
Palliative care and pain control in Romania
Authors: Mosiou Daniela
Published: May 2014

Hospice and palliative care has been pioneered in Romania by Hospice Casa Sperantei. This begun in 1992 with the first hospice home care service being established in Brasov. Since then, services have developed slowly mostly with charitable financial support. These services are mainly run by nongovernmental organizations and most offer home care services. Symptom control beds have been allocated for cancer patients in some oncology centres or chronic disease hospitals. The inappropriate staffing, insufficient medication and lack of a multidisciplinary approach makes it difficult to offer holistic care. In 2005, 33 services were looking after approximately 3900 patients (two hospices for cancer patients; four for acquired immunodeficiency syndrome (AIDS); five hospital departments; 16 home care teams; five day care centres; and one outpatient clinic).
Palliative care nurses’ perceptions of the Edmonton Symptom Assessment Scale: a pilot survey
Authors: Watanabe Sharon , McKinnon Sandra , Macmillan Karen , Hanson John
Published: May 2014

Aim To evaluate, at a pilot level, palliative care nurses’ perceptions of the Edmonton Symptom Assessment Scale’s (ESAS’s) feasibility and usefulness.

Methods All nurses working within the Edmonton Palliative Care Programme were provided with a one-page document containing five statements about the benefits and feasibility of the ESAS, and invited to rate each statement on a five-point Likert scale (1=strongly agree; 5=strongly disagree).

Results Of the 74 nursing staff employed in the programme, 48 (64.9%) chose to participate in this study. Perceptions of the ESAS were most favourable among the 22 registered nurses: 21 (95.4%) believed the ESAS helped staff care for patients; and 17 (77.3%) believed patients benefited from implementation of the instrument. Most registered nurses found that the ESAS took little time and effort to complete. Licensed practical nurses and nursing attendants had a less favourable perception of the ESAS.

Conclusion The results of this pilot study demonstrate that palliative care nurses’ perceptions of the ESAS are favourable generally, although they vary according to level of professional training. A full-scale study will be necessary to attain a more in-depth evaluation.
Reviewing a new model for delivering short-term specialist palliative care at home
Authors: Plummer Sue , Hearnshaw Clare
Published: May 2014

The transition period between inpatient and community care is often a time of anxiety for patients receiving palliative care and their families. The team at Michael Sobell House designed and implemented a new community palliative care nursing service in order to ease the difficulties associated with moving between these settings. The new model offered short-term support for nurses trained in specialist palliative care who provide hands-on care, psychological support, night nursing or advice and support. The service supplemented existing community teams in order to offer a quick response to patient need. The service was evaluated at the end of the first year using two methods: an audit examining the first year’s activity; and a questionnaire to health professionals who had used the service. Insight into the origins of referrals, the tasks performed by the outreach nurses and the aims of each patient episode were gained. Healthcare professionals’ feedback was positive and gave some areas for suggested improvement. Reflections included issues relating to collaborative working between services, gaining a greater understanding of the problems associated with facilitating a home death and exploring potential areas of service expansion.
Correspondence
Authors: de Vocht Hilde
Published: May 2014

In the December issue (Vol 11(12): 643–5), Brian Nyatanga posed some interesting ideas about fear of death and the rational basis for this fear.
Website resources that consider the complex syndrome of delirium
Authors: Smyth Dion
Published: May 2014

Delirium is a complex syndrome with an often complicated cause and it is characterized by discernible disturbances of consciousness, concentration, personal awareness and acuity, thought processes and recall. Although the symptom may wax and wane in the acute or critically ill population and be reversible, in the palliative care setting, the onset of delirium is frequently predictive of the closeness of death. In these circumstances, it may not be corrected easily.
Development of a peer education programme for advance end-of-life care planning
Authors: Sanders Caroline , Seymour Jane , Clarke Amanda , Gott Merryn , Welton Maddie
Published: May 2014

Aim: To develop and evaluate an education programme to help older people find out about treatment and care choices at the end of life.

Design: An action research approach was used to develop an education booklet about end-of-life care. A programme of qualitative evaluation ran alongside the project. It comprised a combination of methods, including face-to-face and telephone interviews and questionnaires with those who took part in the small group discussions.

Sample: The research team consisted of five academic researchers and eight people recruited from voluntary groups representing older adults to act as community advisors in developing the programme. The booklet was tested in small group discussions with members of the general public. Five community advisors volunteered to act as ‘peer educators’ and helped to lead the small group discussions after receiving a 3-day training course to prepare them for their role. The project took place in Sheffield.

Results: The education discussions and the related booklet were perceived as acceptable in providing information about a sensitive issue. Peer educators felt that the training course prepared them well. Community advisors felt that they were treated as equal members of the research team. This project has served as a useful pilot study of the education programme that has now been extended to other areas of the UK.
Barriers to implementing an integrated care pathway for the last days of life in nursing homes
Authors: Watson Julie , Hockley Jo , Dewar Belinda
Published: May 2014

Aim: This paper explores the barriers that needed to be overcome during the process of implementing an integrated care pathway for the last days of life as a way of developing quality end-of-life care in nursing homes.

Methods: An action research methodology underpinned the study. Qualitative and quantitative data were collected in eight nursing homes before, during and after the implementation of the care pathway.

Findings: Six main barriers were identified: a lack of knowledge of palliative care drugs and control of symptoms at the end of life; lack of preparation for approaching death; not knowing when someone is dying or understanding the dying process; lack of multidisciplinary team working in nursing homes; lack of confidence in communicating about dying; some nursing homes are not ready or able to change. These findings highlight a functional ‘rehabilitative’ culture that may not be so appropriate in the current context of nursing home care, and one that makes implementing an integrated care pathway for the last days of life less straightforward than in other settings.

Conclusion: It cannot be presumed that the implementation of a care pathway for the last days of life in nursing homes is straightforward. This study suggests that an action research framework was extremely useful in highlighting and overcoming some obstacles when developing evidence-based practice. Action at both local and public policy level is required to fully address barriers that prevent quality end-of-life care in nursing homes.
Caring for older people: what the web has to offer
Authors: Smyth Dion
Published: May 2014

We live in an ageing society. The French entertainer, Maurice Chevalier, is quoted as having said ‘Old age is not so bad when you consider the alternatives’ but for many people who have endured the passage of time this does not necessarily ring true.
Palliative treatments for patients with inoperable gastroesophageal cancers
Authors: Popat Sanjay , Lopez Juanita , Chan Sam , Waters Justin , Rutter Drag , E Hill Mark
Published: May 2014

Most patients with cancers of the stomach, oesophagus or gastroesophageal junction ultimately develop metastatic or inoperable disease, rendering them incurable. They can, however, benefit from a variety of palliative interventions inving the multidisciplinary team, including chemotherapy, radiotherapy, endoluminal stenting, laser, or surgery. Often a combination of such strategies will be used to control symptoms, and maintain or improve quality of life. In this article, we review these multidisciplinary interventional approaches in patients with gastroesophageal cancers, and highlight future trends.
Is palliative care education in its terminal phase?
Authors: Nyatanga Brian
Published: May 2014

It appears that change is the only constant within health care in the UK. Many NHS Trusts and voluntary organisations, hospices and charities are realigning their priorities; presumably ensuring that patients and carers continue to receive high quality care.
Gastroesophageal cancers: web resources
Authors: Smyth Dion
Published: May 2014

Many stomach and oesophageal cancers are advanced when they are diagnosed making the treatment palliative and the prognosis poor. The effective relief of symptoms that restrict enjoyment of the physical, psychological and social elements of life, such as eating and drinking is paramount. Nevertheless, research into the causes and treatment of this significant cause of cancer morbidity and mortality continues and a recent report on the addition of a regimen of perioperative chemotherapy before and after surgery for localized respectable gastric cancer was found to significantly improve survival compared with surgery alone. The researchers report on results from the UK Medical Research Council Adjuvant Gastric Infusional Chemotherapy (MAGIC) trial may be in the July 6 issue of the New England Journal of Medicine.
The Liverpool Care Pathway in hospices: an exploratory study of doctor and nurse perceptions
Authors: Gambles Maureen , Stirzaker Susan , Jack Barbara A , Ellershaw John F
Published: May 2014

Background: The Liverpool Care of the Dying Pathway (LCP) was developed to transfer the hospice model of care into other care settings. It is a multiprofessional document providing an evidence- based framework for the dying phase. Widely used in hospitals it has now been adopted for use in hospices.

Method: A qualitative study exploring hospice doctors’ and nurses’ perceptions of the impact of the LCP using semi-structured interviews of a purposive sample were undertaken in a 30 bed hospice in the north-west of England. Data was thematically analysed for emerging themes.

Results and Discussion: Eleven interviews were undertaken (eight nurses, three doctors). The results suggest that despite some initial scepticism the LCP has a valuable place in the hospice setting according to the doctors and nurses sampled. Alongside the potential for use in audit and research, perceived benefits include improving documentation, promoting continuity of care and enhancing communication and the care of relatives. Maintaining ongoing education and feedback on the use of the document were highlighted as important mechanisms for ensuring that the delivery of care remained optimum.
Comprehensive Palliative home care: a need for integrated models of primary and specialist care
Authors: Howell Doris
Published: May 2014

The central role of primary care providers in the home setting is acknowledged as a key component to improving access to palliative care. It is important to build on the capacity of primary care providers to deliver effective care but it cannot be assumed that care can be shifted without attention to models of care that support appropriate palliative home care.
The benefits of a palliative care network: a case study in Quebec, Canada
Authors: Morin Diane , Saint-Laurent Louise , Bresse Marie-Pier , Dallaire Clemence , Fillion Lise
Published: May 2014

This article aims to present the beneficial effects associated with the local implementation of an integrated network in palliative care, as perceived by diverse constituency groups. A case study was conducted in the province of Quebec, Canada, using individual (n=16) and group (n=16) interviews, with a total of 106 participants (i.e. managers and formal and informal caregivers). From a content analysis, two categories of beneficial effects emerged: those associated with professional practice and those with patient services. The most important effects of this organisational initiative were found to be the recognition of the palliative care domain necessitating specialised competencies, an improved interdisciplinary collaboration, a more efficient circulation of information between care settings, as well as improved accessibility, continuity and quality of care and services to patients at the end of life.
Decision-making in palliative care: the Mental Capacity Act 2005
Authors: Mann Theresa , Cornock Marc A
Published: May 2014

The Mental Capacity Act 2005 is due to be fully implemented in the UK in October 2007 with some of its provisions having already come into force in April 2007. The Act is concerned with the way in which decisions are made on behalf of those individuals who lack the capacity to make their own decisions. It is therefore expected that the Act will have a significant impact on decision-making within palliative care.
Is a STAS-based tool valid to triage patients at a specialist palliative care inpatient unit?
Authors: JY Fergus Cameron , S Nicol Jacqueline , B Russell Papiya
Published: May 2014

Many tools exist to assess the symptoms and needs of palliative care patients, but no tool has been validated to prioritise patients referred for specialist inpatient palliative care. The aim of this study was to produce and validate such a tool.

A prospective pilot study produced a Support Team Assessment Schedule- (STAS-) based tool – the Admission Assessment Tool (AAT) – and compared this with the existing system of triage at the Marie Curie Hospice, Edinburgh. Validity of the tool was not confirmed and the tool was modified and re-evaluated.

One hundred and twenty-seven consecutive patients referred to the hospice received three AAT scores: from the bed manager; the admitting doctor; and the admitting nurse. The hospice’s multidisciplinary team assessed the urgency of each patient’s admission.

The overall correct classification rate was approximately two thirds, but false positive rates were high and there was poor inter-rater correlation. It is concluded the AAT has not been validated.
Spiritual care as a dimension of holistic care: a relational interpretation
Authors: Bush Tony , Bruni Nina
Published: May 2014

This article reports on a phenomenological study undertaken to explore the meaning of spiritual care as described by a group of palliative care professionals. The research process was informed by van Manen’s (1990) hermeneutic phenomenological approach. Eight palliative care professionals (nurses, complementary therapists and pastoral carers) were recruited from a community palliative care agency in Melbourne, Victoria, which provided home-based palliative care. All participants were female and came from diverse ethnic backgrounds. Data were collected by in-depth conversational interviews and were analyzed thematically. Two themes emerged: ‘a living nexus between spiritual care, spirituality and holism’ and ‘a world of relationships’. The findings of the study point to the need for healthcare professionals to incorporate spiritual care guidelines into practice in order for palliative care to be truly representative of holistic health care.
Palliative care professionals’ perceptions of nutrition and hydration at the end of life
Authors: van der Riet Pamela , Good Phillip , Higgins Isabel , Sneesby Ludmilla
Published: May 2014

The provision of medically administered nutrition and hydration (MNH) for the terminally ill patient is a controversial issue and there has been much debate in the literature concerning this sensitive subject. This article reports on a qualitative research study that explores palliative care nurses’ and doctors’ perceptions and attitudes to patient nutrition and hydration at the end of life. Participants were from an urban and rural palliative care service. Three main discourses were identified: carers’ distress at the non-provision of MNH; palliative care doctors’ and nurses’ position that terminal dehydration lessened the burden of suffering for dying patients; and polarisation between the acute care setting and the palliative care setting. Overlaying these three main discourses are contesting discourses involving cure vs comfort, and acute care vs palliative care. Importantly, the findings of this study reveal that palliative doctors and nurses believe that medically assisted nutrition and hydration at the end stage of life rarely benefits patients, and as long as adequate mouth care is given, patients do not suffer. However, family members do experience emotional distress in dealing with this situation. In caring for dying people, the nurse’s and doctor’s role is one of education and communication, involving a team approach to manage this difficult issue.
Health-promoting conversations about hope and suffering with couples in palliative care
Authors: Gunilla Eva , Saveman Britt-Inger
Published: May 2014

Background: Families living with a dying relative face existential challenges which need to be met by caregivers in a dialogue.

Aim: To describe couples’ experiences of participating in nurse-initiated health-promoting conversations about hope and suffering during home-based palliative care.

Method: Data comprised semi-structured evaluative interviews with six couples. Each couple together had previously participated in three health-fostering conversations with nurses. Data were analyzed by content.

Result: Talking with nurses about existential issues such as hope and suffering made couples feel that they were part of a trustful relationship, and that it was a healing experience. It gave them the opportunity to unburden themselves, as well as a way of learning and finding new strategies for managing daily life.

Conclusion: Health-promoting conversations about hope and suffering should be implemented as a natural part of the caring relationship between caregivers and families in the palliative context.
How notorious do dying prisoners need to be to receive high quality end-of-life care?
Authors: Turner Mary , Barbarachild Zephyrine , Kidd Hugh , Payne Sheila
Published: May 2014

The release from a Scottish prison in August this year of the Lockerbie bomber, Abdelbaset Ali al-Megrahi, caused outrage and condemnation across the world, with the President of the USA, Barack Obama, voicing his disappointment directly to UK Prime Minister Gordon Brown. Al-Megrahi was released on compassionate grounds after being diagnosed with an aggressive form of prostate cancer, having served 8 years of a 27-year sentence for blowing up PanAm Flight 103 and killing 270 people in 1988. In another recent high profile case, the notorious ‘great train robber’, Ronnie Biggs, was also granted compassionate release from a British prison in August. Biggs, now 80 years old, has had several strokes, and at the time of his release was suffering from pneumonia and not expected to survive.
A difficult clinical problem: Diagnosis, impact and clinical management of cachexia in palliative care
Authors: Holmes Susan
Published: May 2014

Cachexia is a distressing and debilitating condition, affecting significant numbers of patients with advanced disease and causing significant distress; it is the primary cause of death in about 20% of all patients with cancer. Though cachexia is most commonly associated with particular tumours, such as head and neck, gastrointestinal tract, pancreas, central nervous system and lung, it may affect any patient with any tumour at any site; no patient and no tumour are excluded. Its origin is both complex and multifactorial, appearing to reflect both reduced nutrient availability and increased nutritional demand, resulting from metabolic and pathphysiological changes, functional inability to ingest or utilize nutrients related perhaps to mechanical interference (e.g. obstruction, malabsorption, surgical intervention), treatment-related toxicity or social and psychological factors. This article offers an overview of the cachectic process, considering its pathophysiology and the factors contributing to its development before considering its diagnosis and impact on individuals. Although guidelines for its clinical management are provided, the article does not provide specialist advice; support will be needed from a dietitian or clinical nurse specialist.