bluuebunny/crossref_metadata_2025 huggingface dataset:
Malignant cutaneous wounds: developing education for hospice, oncology and wound care nurses
Authors: Haisfield-Wolfe Mary Ellen , Rund Cecilia
Published: May 2014

This article reports the results of an educational project, which included a needs assessment survey and the development of a malignant cutaneous wound educational programme. As there is little information on the differences between the management of malignant cutaneous wounds in the hospice and oncology settings, a survey was undertaken to identify differences encountered by hospice and oncology nurses. This needs assessment survey also included enterostomal/wound-ostomy-continence (ET/WOC) nurses who serve as wound care consultants in oncology and hospice settings. The 12-question survey addressed the frequency of wounds, symptoms, and psychosocial issues encountered. The education programme was individualized to the setting by determining the differences between the nurses’ roles based partially on the survey information. One interesting survey finding was that many of the nurses were using the internet to obtain answers for wound management questions; therefore, a future implication of this project is the need to develop an online malignant cutaneous wound educational programme for nurses.
A philosophical discussion of end-of-life decision-making methods for incompetent patients
Authors: Edwards David
Published: May 2014

This article provides an analysis of decision-making methods that can be used with incompetent patients (patients who are unable to make decisions for themselves). It is intended as a general discussion of the relevant issues rather than an examination of legal or policy concerns. The advance directive principle (whereby a person leaves instructions for what to do if they become unable to make their own decisions) is discussed with reference to practical and philosophical issues. Substituted judgment (where surrogate decision makers make decisions that the patient who is incompetent would make if competent) is then discussed followed by the principle of best interests, which requires consideration beyond purely medical interests. The need to make patient-centred quality-of-life judgments as a component of best interests decisions is argued. Conclusions reached include the notion that the advance directive principle and the substituted judgment principle facilitate the concept of self-determination. The best interests principle helps to ensure that patients ending up in this vulnerable position are protected.
Defining and determining quality in end-of-life care
Authors: Thompson Genevieve , McClement Susan
Published: May 2014

Health-care providers are directing increased attention toward improving end-of-life care for patients who are dying and their families (Support Principle Investigators, 1995; Ferrell et al, 2000). Integral to this goal is determining what constitutes quality care for the dying. One of the major problems, however, in making such a determination results from the lack of consensus regarding a conceptual definition of quality. The purpose of this article is to stimulate debate and discussion on the meaning of quality in the context of providing end-of-life care. To aid in this discussion, the various perspectives of what constitutes quality in health-care practice will be discussed with special attention being paid to the delivery of quality end-of-life care. Conceptual decisions drive approaches to research method and measurement (Kristjanson, 1992), therefore an examination of the issues surrounding the measurement of quality health care in the context of care for the dying will also be explored.
Multiprofessional palliative care in a general hospital: education and training needs
Authors: Dowell Linda
Published: May 2014

Palliative care for those who need it should be an integral part of National Health Service (NHS) practice in all settings in the UK. This study used a focus group and individual structured questionnaires, completed during a semi-structured interview, to gain an insight into how different professionals in the hospital view palliative care. An assessment was made of their understanding of it, previous training and current knowledge. The respondents also discussed training needs and personal experiences. The findings show that previous training was variable but in general, relatively young and inexperienced staff were working in the hospital under enormous pressures of workload, staff shortages and without experienced role models from whom to learn the complexities of palliative care. Communication difficulties focused around the lack of support and the inherent problems of multidisciplinary teamworking resulting in frustration and less than optimum care being given. Rapid staff turnover compounded the problems. Although staff were keen to learn, clinical workload always took priority over training. The following recommendations arose from the study: undergraduate training should be standardized, and postgraduate training and support should be ongoing and flexible to accommodate the diversities of knowledge and difficulties encountered in attending set sessions.
Do hospital-based palliative care clinical nurse specialists de-skill general staff?
Authors: Jack Barbara , Oldham Jackie , Williams Anne
Published: May 2014

A large number of clinical nurse specialists work within the area of palliative care, particularly in the acute hospital setting. This article presents the qualitative findings of an evaluation study that looked at the impact of the clinical nurse specialist within a palliative care team in a large acute hospital in the North-West of England. A total of 31 interviews were conducted with stakeholders from across the hospital setting. The data were analysed for emerging themes using a case and cross-case analysis. The results indicated that the senior stakeholders and the palliative care team felt that the clinical nurse specialists may be de-skilling the general nursing and medical staff, while junior staff did not perceive that they were being de-skilled. This article discusses potential explanations for this, including the possibility that junior staff may not be fully aware of the role of palliative care clinical nurse specialists. The impact that clinical nurse specialists are having on empowering the junior staff is also discussed and recommendations for further research are suggested.
An evaluation of a palliative care course for generic nurses
Authors: Loftus Linda A , Thompson Ellen
Published: May 2014

The case for palliative care training for generic nurses is supported in this article, and the results of an evaluation of a generic palliative nursing course are explored. Evaluation of the participants’ knowledge base was undertaken using the Palliative Care Quiz for Nurses, and more subjective evaluation of changes in practice was achieved through a short questionnaire which was sent out to participants 3months after completion of the course. The need for educators and clinicians to develop more evaluation models based on clinical evidence is highlighted.
The experience of parents of children with primary lymphoedema
Authors: Todd Marie , Welsh John , Moriarty Deirdre
Published: May 2014

This article presents the findings of a qualitative study looking at the experiences of parents of children with primary lymphoedema. Six parents participated in the study, which was conducted in Glasgow, and verbatim transcripts of the interviews were analysed for recurring themes. The findings showed that these parents endured a difficult time before receiving a diagnosis and appropriate treatment, caused by a lack of professional awareness of the condition. Their day-to-day management of the illness was hampered by the psychological effects on the children. Parents also found a reluctance by professionals to seek information on their behalf. Professional awareness of this condition need to be raised and improved information and support made available for those involved in the care of children with lymphoedema. The article discusses how this may be achieved.
Palliative care for Hindus
Authors: Gatrad Rashid , Choudhury Pamela P , Brown Erica , Sheikh Aziz
Published: May 2014

This article presents the chronology and significance of events that typically occur before and after death in the Hindu household. In the first section the authors concentrate on issues and considerations before death that are potentially of relevance to health-care professionals providing terminal care. The section that follows aims to help health-care professionals to understand the events that often occur in the immediate aftermath of death. It is hoped that this will help health-care professionals provide holistic care for their patients.
UK Government responds to Health Committee report
Authors: Cooley Candy
Published: May 2014

In September 2004 the UK Government responded to its Health Select Committee inquiry into current developments within palliative care services (Department of Health, 2004). These documents often skim past the interest of the majority of individuals delivering patient care and may not always be considered a good ‘read’.
Enhancing hospital nurses knowledge of palliative care: a network nurse programme
Authors: Jack Barbara A , Gambles Maureen , Saltmarsh Philip , Murphy Deborah , Hutchison Trudy , Ellershaw John E
Published: May 2014

The palliative care network nurse programme was developed to educate and skill generalist nurses in the care of the dying patient within the acute hospital setting. It developed at the request of nurses who had been involved in the piloting of the Liverpool Care of the Dying Pathway. The programme consists of a monthly meeting that encompasses an educative component and networking opportunities. In a preliminary evaluation of the programme, a questionnaire was sent to the network nurses (response rate 80%, n=33). The nurses reported the programme to be beneficial in providing them with increased palliative care knowledge. Support and networking opportunities were also identified. This article discusses the programme, the evaluation findings and makes suggestions for further research.
Palliative care for children in the Republic of Belarus
Authors: Costello John , Gorchakova Anna
Published: May 2014

This article provides a descriptive account of a children’s hospice in the Republic of Belarus. The hospice provides palliative home care for children with a range of life-limiting illnesses and their families.
Clinical governance in specialist palliative care
Authors: Naysmith Anne
Published: May 2014

This article is based on a talk presented at IJPN/Palliative Medicine conference held in London, June 2004. In it I hope to share my enthusiasm and provide a little advice on this sometimes less than popular topic.
Palliative care in end-stage renal failure
Authors: Smyth Dion
Published: May 2014

The alleviation of suffering associated with the signs and symptoms of advanced and progressive renal failure, such as nausea, pain, agitation and twitching, is often aligned with the decision to forgo further ineffectual measures and to firmly focus on palliative care.
Ten years of IJPN: taking stock and looking forward
Authors: Laughton Ruth
Published: May 2014

Welcome to the 10th anniversary issue of the International Journal of Palliative Nursing. It seems hard to believe it is a whole 10years since the journal was launched. In that time the content and growth of IJPN have reflected the many changes taking place in palliative nursing. This has been a decade of expansion and development; a decade of increasing confidence and a growing voice.
A personal account of palliative care in a non-palliative care setting: sharing best practice
Authors: Whitnell Jackie Y
Published: May 2014

This personal account from the UK discusses the importance of all nurses having an understanding of end-of-life care. It highlights simple, yet fundamental, palliative care practice in an acute setting. The main themes include breaking bad news, daily treatment and care, implications of staff morale for patients and families, facilities for carers and end-of-life care practice.
Dame Cicely Saunders 1918-2005: a great palliative care pioneer
Authors: Hockley Jo
Published: May 2014

Dame Cicely Saunders, Order of Merit (OM), Dame Commander of the Order of the British Empire (DBE), and founder of the modern hospice movement, was the visionary behind the building of St Christopher’s Hospice, in Sydenham, London in 1967. After nearly 40 years, the hospice movement has had a worldwide impact and St Christopher’s Hospice has helped to establish palliative care programmes in more than 120 countries.
A study of staff support mechanisms within children’s hospices
Authors: Baverstock Anna C , Finlay Fiona O
Published: May 2014

Objective: To establish what staff support mechanisms are currently in place within children’s hospices in the UK looking specifically at ‘individual’ staff support including mentoring and ‘team’ staff support including the use of debriefs.

Design: A self-administered postal questionnaire study.

Setting: Children’s hospices in the UK.

Main outcome measures: Looking at: use of team meetings; use and content of team debrief; availability of a bereavement counsellor for staff; availability of individual staff mentor and/ or clinical supervisor and availability of internal and external training for staff.

Results: There was a 76% response rate. Of the hospices that responded 100% of these held team meetings, had access to a bereavement counsellor and ‘in house training’ and 88% held a debrief after a significant or traumatic event.

Conclusions: Looking after staff who care for dying children and their families is a priority. Children’s hospices have good support structures in place for staff – the acute sector has much to learn.
Developing an educational programme in paediatric palliative care
Authors: Price Jayne , McNeilly Patricia
Published: May 2014

Paediatric palliative care has increasingly been recognised as a specialist area of practice. Essentially it is a holistic approach to care that embraces a range of elements concerned with not only the management of symptoms but also the psychosocial and spiritual needs of the child and family through death and bereavement.

Children requiring palliative care represent a diverse patient group whose illness trajectories are often prolonged and unpredictable and this creates much stress for children themselves, their families and professionals who support them (Price and McFarlane, 2006). Such an approach to care is unique and the development of paediatric palliative care educational programmes requires careful and thorough planning, with the specific needs of the child and family being pivotal to the process.

This article recounts the development of the first paediatric palliative care programme in Ireland using the curricular cycle described by Peyton (1998).
A practical guide for nurses in diluent selection for subcutaneous infusion using a syringe driver
Authors: McLeod Fiona , Flowers Charne
Published: May 2014

Appropriate diluent selection in continuous subcutaneous infusion optimises symptom management and client well-being. The responsibility of diluent selection is commonly one of the attending nurse. This paper was developed with the intention of providing nurses with practical instruction for diluent selection when preparing medications for administration subcutaneously using a syringe driver. A literature review was undertaken of published journal databases and published guidelines sites. Recommendations regarding diluent choice were reviewed in two iterations by an expert panel of palliative care nurse clinicians. The principles for diluent selection are presented. They are based primarily on expert opinion level of evidence given a lack of primary research evidence in the area of diluent selection.

There is a pressing need for manufacturers’ guidance on diluent selection and independent research to establish the impact of diluents on drug and drug combinations when using syringe drivers. Until such time that this evidence is available to guide practice, clinicians need to be trained to inspect solutions and assess the effectiveness of the medication in controlling symptoms. The capacity of this paper to provide practical instruction has been limited by the lack of rigorous evidence available, and indeed, the process of developing this guide identified perhaps more questions than answers available at the present time.
Implementation of an adaptation programme for Filipino nurses in a UK adult cancer hospice
Authors: Parry Maria , Lipp Allyson
Published: May 2014

The UK has a history of recruiting international nurses successfully. This recruitment places a responsibility on healthcare providers to offer a suitable adaptation programme in order to prepare the internationally recruited nurses for registration with the regulatory body. This article outlines the organization and implementation of such an adaptation programme as a joint venture between a higher education provider and a local hospice which was designed specifically to meet the needs of palliative care patients.
Evaluating an education programme in general palliative care for community nurses
Authors: Hughes Philippa M , Parker Chris , Payne Sheila , Ingleton M Christine , Noble Bill
Published: May 2014

Aim To evaluate the effects of a palliative care education programme on the self-reported knowledge and confidence of 72 community nurses.

Design A prospective longitudinal postal questionnaire survey was conducted.

Findings Seventy-one (99%) completed a pre-course questionnaire, 52 (72%) a questionnaire at completion of the course, and 37 (51%) a questionnaire 1 year later. Following the programme, more nurses felt that their professional needs were being met well or very well. Confidence in practice showed an increasing trend over time. Desire for education was lower on course completion than at its start. Palliative Care Nursing Quiz scores rose from a pre-course median of 12.5 to 15 at course completion (P=0.001) which was maintained 1 year later.

Conclusion The education programme was successful in raising standards of knowledge, professional development and confidence. Improvement was maintained 1 year later.
The moral maze of assisted suicide
Authors: Becker Robert
Published: May 2014

Here in the UK the complex issue of assisted suicide has once again been in sharp focus in recent weeks. The House of Lords has debated for the second time an amended version of Lord Joffe’s Assisted Dying Bill (Joffe 2006), which was heavily defeated and now stands little chance of becoming law. The issue, however, remains firmly on the agenda of several well organised and eloquent organisations who present cleverly thought out and cogent rationale in support of such legislation.
Adult bereavement in five English hospices: Participants, organisations and pre-bereavement support
Authors: Reid David , Field David , Payne Sheila , Relf Marilyn
Published: May 2014

Method: In-depth organisational case studies of five English hospice bereavement services.

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

Findings: Despite the differences in philosophies and activities among the hospices a common pattern of support were apparent. All made contact with the bereaved relatives or main carers shortly after the patient’s death, all provided information about practical and emotional aspects of bereavement and a mixture of social and therapeutic support. None of the hospices used formal ‘risk assessment’, but at all sites there were processes in place to identify people who might benefit from bereavement support. Pre-bereavement support and continuity between this and bereavement support were important aspects.

Conclusions: The case studies allowed analysis of individual characteristics and comparison between services. The high response rates suggest thst the questionnaires used were acceptable to bereaved people. A clear and explicit rationale for bereavement support activities is a pre-requisite for the development of a cohesive and integrated programme of support to help resolve difficult decisions about individual clients. Prebereavement support by hospice staff positively contributes to the person’s experience of bereavement. Hospices should address the issue of providing the appropriate level of bereavement support.
Providing help and support for caregivers
Authors: Moffat Polly
Published: May 2014

The recent Help the Hospices conference in Harrogate was a great success and was a good opportunity for palliative care professionals from all over the world to share their knowledge and learn about how hospices can make a difference to the care of patients at the end of life. A report on the conference and its programme can be found on page 508 in this issue.
Children’s needs when facing the death of a parent from cancer: part two
Authors: MacPherson Catriona , Emeleus Martha
Published: May 2014

A small exploratory study was conducted to identify the psychosocial needs of children facing the death and subsequent bereavement of a parent from cancer. The focus was on the palliative phase of care through the bereavement period with the aim of identifying the best way forward in further developing a community-based service for children in Fife.

Part one selectively reviewed the literature related to children’s and families’ needs when facing and dealing with the death of a parent, and described. Part two presents the results and reports the issues which will be considered as a basis for future service development.
Palliative care for patients with end-stage renal disease: experiences from Hong Kong
Authors: Chan Chun-hung , Noble Helen , Lo Sing-hung , Kwan Tze-Hoi , Lee Siu-lan , Sze Wing-kin
Published: May 2014

As the number of patients with end-stage renal disease continues to grow in Hong Kong, many are opting to be managed conservatively without dialysis. A new service was initiated in Tuen Mun Hospital in 2004 aimed at offering palliative care to dying patients with renal failure. This paper presents retrospective data reflecting our dealings with patients who decided not to initiate or considered discontinuation of dialysis. In total, 107 patients received palliative care from the inception of the new service in August 2004 until July 2006. The findings illustrate that decisions related to initiation or withdrawal of dialysis are often related to personal beliefs and sentiments. Further exploration using qualitative methodology is recommended. The case history expounds a situation in which the patient cannot participate in decision-making concerning treatment options and offers some exploration of the ethical intricacies involved in treating very sick patients with dialysis therapy.
Development and evaluation of a Nursing Assistant Computerized Education Programme
Authors: Ersek Mary , Wood Becky B
Published: May 2014

Aim: To describe the development and evaluation of the Nursing Assistant Computerized Education Programme (NA-CEP), a computer-based palliative care curriculum for nursing assistants.

Methods: Sixty-five nursing assistants working in various clinical settings completed measures to evaluate usability, clarity, and relevance of the programme to their work. Participants’ end-of-life knowledge and confidence also was assessed before and after NA-CEP use.

Results: Findings indicate that NA-CEP is easy to use, clearly presented, appropriate in reading level and content, and highly relevant to nursing assistant practice. NA-CEP also significantly increased nursing assistants’ knowledge about palliative care.

Conclusions: Evaluation findings indicate that NA-CEP is a useful tool for nurses and others who are responsible for training, orientation, and continuing education of nursing assistants.
Symptom pathways from referral to death: measuring palliative care outcomes
Authors: Lewin Gill , Haslehurst Paula , Smith Joanna
Published: May 2014

This article reports on the first stage of a process to develop a clinical performance indicator for a community-based palliative care service that may inform the development of an agreed set of indicators for the whole sector.

The study explores whether symptom data that are routinely collected to plan and monitor the care being provided by a community-based palliative care service also have the potential to be used to audit care against standards, compare services, and inform funders or purchasers. The article looks at the symptom distress scores of patients over the whole episode of their care from referral to death, by constructing pathways for each symptom (pain, insomnia, appetite, nausea, bowel, breathing problems, fatigue and pain). How these data may provide a multi-purpose measure of clinical outcomes is then discussed. It is concluded that, following further research to establish the symptom assessment scale’s reliability and validity in different settings, it should be considered for universal adoption by palliative care services.
Access to hospice care: multi-professional specialist perspectives in South Africa
Authors: Ens Carla DL , Gwyther Liz , Chochinov Harvey M , Moses Stephen , Jackson Catherine , Harding Richard
Published: May 2014

Research addressing the nature of hospice referrals focuses primarily on the effect of late referral and the majority of studies are based in North America. Using health care professionals as key informants, the goal was to describe the hospice referral system used in the Western Cape Province of South Africa from the perspective of nursing sisters, medical doctors, and social workers. Semi-structured interviews with 29 such individuals were conducted at 15 rural, urban and peri-urban sites, exploring their perceptions towards, and experiences with, patient referral to hospice programmes. Interpretative descriptive design allowed for a comprehensive description of the referral process as well as an extension of the data based on the perspectives of the three stakeholder groups. The majority of hospice referrals originated from either community-based clinics or state hospitals. Three main themes, centring around the process of referring, (lack of) standardization, and (lack of) knowledge, arose from the analysis of the transcripts. An interpretation of the themes led to the development of a model describing the ideal hospice referral system for South Africa.
What do community palliative care nurse specialists do? An activity analysis
Authors: Newbury Jenny , de Leeuw Wayne , Newton Claire
Published: May 2014

A self-assessed activity analysis of a team of community palliative care nurse specialists was undertaken as part of a wider review of their service. Although it was not a research project, it proved to be a pragmatic and worthwhile means of analysing the work of individual nurse specialists and measuring what they actually do. The results and outcomes are presented in order to share the experience and to break down some of the isolation of community palliative nursing practice. The study found quite wide variations in practice between the individual nurse specialists but that most spent a high proportion of their time on clinical work at the expense of other aspects of the nurse specialist role, such as education, research and audit. It also found that most of the nurse specialists worked many more than their contracted hours and took very few breaks during the working day. The study promoted discussion within the team, changes have been introduced and the study will be repeated in two years’ time.
Pathways in end-of-life care for older people: care managers’ reasoning
Authors: Österlind Jane , Hansebo Görel , Lantz Göran , Ternestedt Britt-Marie
Published: May 2014

Seven care managers employed by a large municipality in Sweden were interviewed concerning their reasoning regarding end-of-life care for older people. Data were analyzed using a hermeneutic approach. The results showed that end-of-life care was considered to constitute a small part of the care managers’ work and was something they did not focus on in general when assessing care needs. Two different pathways to death – the natural and the medical – were identified. In the natural pathway, death was invisible and the care was more routine-oriented. In the medical pathway, death was visualised and the care more individualised. Neither of the pathways paid attention to communication or existential needs. Thus, there is a need for a palliative pathway to death based on the philosophy of palliative care, which could provide guidance for care managers and promote opportunities for older people to achieve a dignified dying and death.
The concept of spirituality in palliative care: an alternative view
Authors: Paley John
Published: May 2014

Here are some of the things that are said about spirituality, quite routinely, in the nursing literature. Spirituality is ‘a dimension within every person’ (Golberg, 1998). It is ‘present in all individuals’ (Narayanasamy, 1999), including ‘the atheists, agnostics, humanists and hedonists’ (Baldacchino and Draper, 2001). ‘Spirituality is an invisible force’, a ‘mysterious and transcendental force’, a ‘force that transcends the rational and intellectual capabilities of our human state, uniting us with the whole of creation both at a material and supernatural level’ (McSherry, 2006). It assists us ‘to access a mode of perception that goes beyond logical reasoning and leads to congruence through a sense of unity with the universe’ (Friedemann et al, 2002). Its essence is ‘transcendence, an appeal to, or a recognition of, a higher level existence wherein the paradoxes and antinomies of our mundane existence are to be resolved’ (Dawson, 1997). Spirituality is the central artery that ‘permeates, energizes and enlivens’ the other dimensions of the person (Ross, 1997), an ‘everlasting phenomenon that sustains and pervades all cultures’ (Narayanasamy and Owens, 2001).
The meaning of Friday afternoon tea for informal caregivers on a palliative care unit
Authors: Parsons Sheila , Anderson Colleen
Published: May 2014

Purpose: This study was carried out to determine the meaning of an established intervention called ‘Friday afternoon tea’ for family members and patients on a palliative care unit. Method: A mini-ethnographic study was undertaken in a rural hospital in Newfoundland, Canada, to explore the meaning of ‘Friday afternoon tea’ as a sub-culture of the palliative care unit. Data were collected using semi-structured, audio-taped interviews with eight family members whose loved ones were receiving end-of-life or symptom management treatment. Data collection also included participant observation and field notes. Thematic analysis of the narratives revealed three themes: more than a cup of tea, a welcomed distraction, and caring and comfort. Discussion and conclusion: The degree of distress experienced by family members reinforced the importance of the type of supportive intervention that ‘Friday afternoon tea’ provides. It was found that this bedside care provided additional opportunities for social interaction for family caregivers. This study contributes to evidence-based knowledge concerning the benefits of a cost-effective intervention which can easily be replicated by other palliative care units. This study acknowledges the importance of healthcare team members carrying out informal social initiatives.
A neurological care pathway for meeting the palliative care needs of people with life-limiting neurological conditions
Authors: Brown Janice Barbara , Sutton Lucy
Published: May 2014

The expectancy and demand for palliative care provision beyond cancer continues to increase in the Western world. This challenge raises the need for useful tools to support palliative care practitioners and other specialists in caring for people with a range of non-malignant life-limiting diseases. This paper describes the development process and the resulting care pathway for meeting the palliative care needs of people living with neurological conditions. The pathway was designed as a template, suitable for local modification, to support timely referrals and coordination of care through a patient’s illness journey incorporating the provision of palliative and end-of-life care. Although the pathway was developed for neurological conditions, it is suggested that presentation of the development process and the care pathway template may support practitioners to develop further pathways for a wider range of life-limiting conditions.
Paediatric antiretroviral therapy outcomes under HIV hospice care in South Africa
Authors: Harding Richard , Brits Hanneke , Penfold Suzanne
Published: May 2014

Aim: This study aims to evaluate outcomes of children with advanced HIV disease who are initiated on antiretroviral therapy under multiprofessional specialist paediatric hospice care. Design: A retrospective cohort file review methodology was undertaken in a specialist paediatric hospice in South Africa. Methods: Antiretroviral therapy was initiated for children with a CD4% of less than 15% (for children under 6 years of age) or a CD4 count under 200 for children over 6 years of age. According to the World Health Organization Europe (2007) staging criteria, all children were stage 3/4 HIV disease. Multiprofessional staff provided daily tailored assessment and care. Each child was followed for 6 months. Data on mortality, CD4 count, CD4 percentage, body weight, and viral load were measured at initiation and a follow-up after 6 months. Findings: Of the 37 children initiated on ART therapy, 31 survived at 6 months. From a baseline of mean body weight 13.3kg, there was an average of 3.2kg increase (P<0.001). Mean CD4 counts more than doubled (P<0.001), with a mean increase of 467 cells per mm3 blood. Mean CD4 percentages increased from 13.6–19.4% (P<0.001). Viral load decreased significantly from a median 271000 copies per mm3 blood to a median of 25 (imputed value for undetectable viral load) (P<0.001). Twenty-three children had an undetectable viral load. Conclusion: For children with advanced HIV disease, who are least likely to access or respond to treatment, this study demonstrates a novel approach to managing care successfully.
Working in partnership to achieve optimal end-of-life care for people living with neurological conditions
Authors: McClinton Pam , Byrne Judi
Published: May 2014

Historically, end-of-life care in the United Kingdom (UK) has focused on people who are dying from cancer, partly driven by government funding for palliative care being specifically earmarked for cancer patients. However, as only 25% of people who are dying have cancer (The National Council for Palliative Care [NCPC], 2008), this means that palliative care is not always being accessed by non-cancer patients.
Identifying transitions in terminal illness trajectories: a critical factor in hospital-based palliative care
Authors: Dalgaard Karen Marie , Thorsell Georg , Delmar Charlotte
Published: May 2014

This article describes the significance of the identification and explicit communication of the different clinical phases in incurable illness trajectories in a hospital setting. The article is part of a qualitative study carried out in a Danish haematology department. The data were obtained through a total of 157 hours of participant observation and informal interviews with patients, families, doctors and nurses and four focus group interviews with doctors and nursing staff. Grounded theory was applied for the data analysis. The findings outline how the unpredictability of certain haematological malignancies and barriers in professional practice tended to postpone identifications of transitions between clinical phases. The study has identified ten barriers including personal, professional, time-related, cultural and organizational-for an open dialogue between staff, patients and families about illness progression. The quality of palliative care was affected as different clinical phases require different treatment and care strategies. Complex intervention is called for.
Managing patients receiving sorafenib for advanced hepatocellular carcinoma: a case study
Authors: Hull Diana , Armstrong Ceri
Published: May 2014

Despite improvements in cytotoxic chemotherapy agents over the last 50 years, the outlook for patients with many of the most common solid tumours has remained poor. However, in recent years a number of targeted therapies have been licensed in the European Union for use in these cancer types. One such therapy, a tyrosine kinase inhibitor (sorafenib) is now used to treat patients with advanced hepatocellular carcinoma (HCC) and metastatic renal cell carcinoma. This article will explore the role of the oncology nurse in managing patients receiving sorafenib for advanced HCC. A brief overview of sorafenib as a current treatment approved for advanced HCC in the palliative setting is presented. This is followed by a case study-based discussion with particular reference to some of the key care coordination challenges facing the oncology nurse. The management of treatment-related adverse events and the importance of using a multidisciplinary team approach is also reviewed.
Genomes and gaming: learning about genetics
Authors: Smyth Dion
Published: May 2014

Just as our knowledge of the genome is seemingly developing exponentially, so too are the number of websites and podcasts that quickly interpret and deliver such information from laboratory, clinical setting or academic institution, to your home or portable devices. This month’s Web Words continues the theme of exploring the material available about genetics.
The meaning of hope from the perspective of Chinese advanced cancer patients in Hong Kong
Authors: Mok Esther , Lam Wai Man , Chan Lai Ngor , Lau Ka Po , Ng Jeffrey SC , Chan Kin Sang
Published: May 2014

Aim: This article reports a study to examine the meaning of hope from the perspective of Chinese advanced cancer patients in Hong Kong. Methods: Semi-structured interviews were conducted with a convenience sample of advanced cancer patients recruited from the palliative care unit of a local hospital. Data were saturated after 17 participants were interviewed. Qualitative content analysis was adopted to analyse the data. Findings: Hope as experienced by the participants was found to consist of five components: living a normal life, social support, actively letting go of control, reconciliation between life and death, and wellbeing of significant others. Conclusions: While hope is related to the wellbeing of patients with advanced cancer, successful palliative care partly depends on an awareness of the importance of hope in the end-of-life context and cultural sensitivity to the meanings behind it from the patients’ own perspective.
Palliative care in the intensive care unit: an interview-based study of the team perspective
Authors: McKeown Alistair , Cairns Chris , Cornbleet Mike , Longmate Andrew
Published: May 2014

Background: The provision of palliative care is an evolving and expanding issue, with the inclusion and management of non-malignant conditions gaining increasing focus. This has seen provision of palliative care expand into increasingly acute settings, an example of which is the rising recognition of the need for good quality end-of-life-care in intensive care units (ICU). Methods: This qualitative interview-based study aimed to explore in depth the Stirling Royal Infirmary ICU team’s views and experiences of the difficulties of providing palliative care in an intensive care setting, and identification of the dying patient. Results: The ICU team reported there to be a number of advantages to providing end-of-life care in the ICU in terms of access to nursing and medical care. They also reported there to be issues surrounding training, identification of palliative care patients and over-aggressive management. Further collaboration between ICU and palliative medicine is required to develop understanding between the two specialties and expand provision of palliative care in this unique clinical setting.
A retrospective analysis of preferred and actual place of death for hospice patients
Authors: Holdsworth Laura , Fisher Simon
Published: May 2014

The purpose of this study was to explore recording rates of preferences, and the preferred and actual place of death among hospice patients. Data was collected retrospectively from a group of three hospices over a 6-month period. Of 298 patients, 174 patients (58.4%) had no expressed preference for place of death. The congruence of preferred and actual place of death was: home 52.5%; hospice 86.2%; hospital 100%; and care home 50%. The overall congruence was 61.7% and kappa value was 0.38 (0.23-0.52, 95% confidence interval). The low rate of expressed preferences suggests that congruence of preferred and actual place of death was a suitable outcome measurement for less than half of hospice patients. A wider range of patient-focused indicators for identifying the quality of end-of life services is needed as preferred place of death may not be the only suitable indicator for all patients.
Evaluating a fast-track discharge service for patients wishing to die at home
Authors: Moback Berit , Gerrard Ruth , Campbell Janet , Taylor Lucie , Minton Ollie , Stone Patrick Charles
Published: May 2014

Background: The UK Department of Health's End of Life Care Strategy highlighted the low percentage of patients who achieve their wish to die at home (~20%). Figures in south west London were below the London regional average. This paper reports an attempt to improve the proportion of patients from one hospital in the area achieving their preferred place of death. Methodology: A funded initiative by two local primary care trusts allowed the development of a 7-day-per-week fast-track discharge service provided by the hospital palliative care team. The hospital team acted as coordinators, ensured that the correct medication and equipment would be available at the home, and personally transferred the patients to community services. Results Data is presented from the first representative period of fast-track discharging (June 2009—July 2010). A total of 110 discharges were facilitated over this time, with the rate increasing as the service developed. The vast majority of discharges occurred within 72 hours, and a significant number (~20%) occurred within 24 hours. Conclusions The data indicate that the new service is effective. There are logistical problems in providing such a service and these are discussed. Further work is required to determine the feasibility of extending this service model to other acute hospitals and to evaluate its health-economic impact.
Overcoming the hurdles: setting up clinical trials in three UK hospices
Authors: Dunleavy Lesley , Griggs Anita , Wiley Gail , Hughes Mandy
Published: May 2014

Three nurses, all experienced in palliative care but new to a research role, were employed by a Comprehensive Local Research Network to form part of the first network of ‘research-active hospices’ in the UK. This article outlines the challenges and hurdles faced by the research nurses and illustrates how their achievements can be capitalized on to ensure that future research nurses have a greater insight into the research process when undertaking clinical palliative care research studies in a non-NHS setting. The research nurses' experiences have highlighted issues that need addressing, particularly in relation to research governance—ethical and Research and Development approval for National Institute for Health Research portfolio studies being undertaken in what are effectively classed as non-NHS institutions with NHS patients. These issues are hopefully now being taken forward by those responsible for policy-making, ensuring that an ever-growing population of palliative care patients involved with hospice services has the same access to participation in research as other NHS patients.
Perspectives on spiritual care at Hospice Africa Uganda
Authors: Kale Sachin S
Published: May 2014

Objective: To examine how spiritual care is perceived in an African context by recording the lived experiences of palliative care workers at Hospice Africa Uganda (HAU). Methods: Fifteen palliative care workers with experience in providing spiritual care were interviewed and their responses were thematically analyzed. Results: The participants rarely saw a distinction between religion and spirituality. Although many were comfortable dealing with religious issues emanating from the major religious traditions, including those different from their own, they were less comfortable in handling issues arising from native Ugandan traditions and culture. Beliefs such as witchcraft and cursing in particular were considered harmful and not spiritual, and several participants reported feeling uncomfortable when providing spiritual care to patients with these beliefs. The interviewees also cited difficulties such as the lack of time, resources, and available religious leaders in the community, as well as language barriers. Conclusion: Although the palliative care workers at HAU have views on spirituality and spiritual care that have much in common with the palliative care literature from North America and Europe, they also face more specific challenges. These include providing spiritual care in a resource-poor setting to patients undergoing severe economic hardship, and providing spiritual care to those with traditional African religious beliefs.
The central importance of spirituality in palliative care
Authors: Amoah Charles Fiifi
Published: May 2014

The potential of spirituality to contribute to improving the quality of life of those experiencing life-threatening illness is yet to be fully realised in most palliative care settings. This may be due to many health professionals relegating spiritual issues to the background of palliative care instead of regarding spirituality as a domain equal to the physical, social, and psychological domains. The aim of this paper is to demonstrate, by reviewing the literature and providing examples from the author's personal experience as a chaplain, why spirituality should be considered on an equal footing with other key themes in palliative care, like relieving pain and advance care planning. It is hoped that this will create more self-awareness and generate greater discussion about the subject.
‘Making sense’: nurses' experiences of changing practice in caring for dying patients in New Zealand
Authors: Thurston Jenny , Waterworth Susan
Published: May 2014

Aim:

To explore nurses' experiences of a top-down change that involved the introduction of the Liverpool Care Pathway for the Dying Patient (LCP).

Methods:

Using a qualitative design, two focus groups were conducted with a total of ten nurses and five semi-structured individual interviews were conducted with senior nurse managers.

Findings:

The nurses viewed their experience with the LCP positively, highlighting an improvement in their knowledge base regarding care of the dying. ‘Making sense’ was a key theme that reflected how the nurses attempted to manage the impact of the change on their own practice and on the nursing team.

Conclusion:

Organisations need to invest skilled manpower, time, and resources into supporting nurses in their transitions. The benefits of such investment are an increased likelihood of implementing evidence-based care and sustained practice and organisational change. For patients and their families and friends this investment will result in tangible improvements in the delivery of treatment and care at a time in their lives when they are most vulnerable.