bluuebunny/crossref_metadata_2025 huggingface dataset:
The role of the community hospital in the care of dying people
Authors: Llewellyn Julie , Evans Nici , Walsh Helen
Published: May 2014

The institutionalization of death and dying is a prominent feature in today’s health service, despite overwhelming evidence that patients would prefer to die at home. This article explores the reasons why this has occurred. The role of the community hospital in the provision of terminal care, with specific reference to Blaenau Gwent in South Wales, is examined. Despite the dearth of literature which specifically relates to the role of community hospitals in terminal care, the main findings revealed that community hospitals may be an ideal setting in which to care for terminally ill people who do not require specialized hospice beds.
The impact of loss on adolescents: developing appropriate support
Authors: Mearns Sandra J
Published: May 2014

Much of the literature examining loss and bereavment addresses the adult or child experience and overlooks the unique impact that bereavement has on adolescents during an emotionally, physically and psychologically turbulent phase of life. This literature review explores current knowledge regarding the impact of loss on adolescents and the manner in which effective support mechanisms can be fostered within the hospice setting. Adaptive and maladaptive grief reactions are described and related to the unique developmental stages of adolescence. Studies have revealed that adolescents who had a close social network of family and peer group members in which open and supportive communication existed had a healthier bereavement outcome. An important part of the nurse's role is to encourage and facilitate this process pre- and post-bereavement. Some adolescents may be reluctant to accept such individually focused intervention and professionally organized support groups may provide a more acceptable and relaxed type of formal support. Recommendations for practice are outlined to highlight ways in which support may be improved and also to raise awareness of the needs of grieving adolescents.
Ethical arguments for providing palliative care to non-cancer patients
Authors: Wasson Katherine
Published: May 2014

Palliative care professionals have begun to address the issues surrounding the provision of palliative care to non-cancer patients. Yet the situation remains inconsistent and morally unjustifiable. The duty to provide care, non-maleficence, beneficence, protecting the patient’s best interests and respecting patient autonomy are key responsibilities which palliative care professionals have for all their patients, regardless of their diagnosis. On the grounds of justice as fairness, equality and equity, the current inconsistencies in the provision of palliative care to non-cancer patients are unfair unequal and inequitable. Professionals can no longer ignore their moral responsibility to address these issues and change their practice to include the provision of care for dying patients regardless of their diagnoses.
A randomized trial of winged Vialon cannulae and metal butterfly needles
Authors: Dawkins Linda , Britton Doreen , Johnson Ian , Higgins Bernard , Dean Taraneh
Published: May 2014

The purpose of this parallel randomized study was to evaluate whether subcutaneous infusion sites initiated with winged vialon cannulae would have fewer skin reactions and longer site duration than metal butterfly needles and reduce needlestick injuries to staff. Data were collected on 42 hospice inpatients from the time of insertion of the first needle or cannula to the time of the first replacement of that device. A non-parametric survival plot for time (Kaplan-Meier method) was conducted and the survival time to replacement of the Vialon cannula was found to be longer than the metal butterfly needle. During the study period there were a total of four needlestick injuries to staff from metal butterfly needles. The authors conclude that Vialon cannulae reduce the frequency of site changes and are safer for staff to use because of the reduced risk of needlestick injuries.
Nurses’ responses to death and dying: a need for relentless self-care
Authors: Wakefield Ann
Published: May 2014

This article examines the lived experiences of nurses responsible for administering care to dying patients. To achieve this, the article explores the notion of ‘relentless self-care’ and why this is an important feature of palliative nursing practice (Renzenbrink, 1998), even though for many nurses, their feelings of loss must remain hidden (Doka, 1989). Because of this, nurses try to protect themselves from distressing symptoms by distancing themselves from death. Consequently, nurses may locate dying patients in side-rooms and hand over part of their caring role to relatives (Sudnow, 1967; Wakefield, 1996, 1999). In view of these responses, the final part of the article will attempt to offer a way forward for the nursing profession, by examining why nurses should treat their own feelings of loss as being analogous to those of a bereaved relative.
Assessment of quality of life in palliative care
Authors: Morgan Gwyneth
Published: May 2014

Assessment of palliative care and the evolution of interest in quality-of-life (QoL) measures are inextricably linked. Several validated QoL measures have become accepted for use, so it is increasingly unlikely that a ‘gold-standard’ measure will emerge. This range of current measures is potentially valuable because it provides the user with a degree of choice. However, such a range also brings to light methodological uncertainties. The aim of this article is not to identify the best measures, but to explore some of the factors that should guide that choice.
Cognitive behavioural therapy in pain management for sickle cell disease
Authors: Thomas Veronica J Nicky
Published: May 2014

It is well established that the treatment of pain is improved by the incorporation of psychological, social and behavioural components in that treatment (Rosenthiel and Keefe, 1983). However, until very recently, the management of sickle cell disease (SCD) in British hospitals has focused exclusively on the physical dimension of pain (Thomas et al, 1998). Although pain in SCD is a physiological phenomenon signalling that something is wrong (vaso-occlusive crisis), every individual reacts in a different way. This reaction is influenced in part by immediate role models, usually within the family, and by a person’s cognition (thought patterns, beliefs and expectations) in relation to the pain. This paper presents research that has shown that cognitive behavioural therapy (CBT) in SCD is an effective aid in the treatment of chronic pain, reducing psychological distress and boosting confidence.
Nurse–doctor collaboration in cancer pain management
Authors: Lockhart-Wood Karen
Published: May 2014

The management of cancer-related pain is a major focus of the work for nurses and doctors working in the hospice setting. On oredr for pain to be managed well, it is important that the two professions work in collaboration with each other. However there are many factors that influence the collaboration process. This article reports the results of a study that investigated the nature of collaboration between nurses and doctors when managing cancer pain. The theme categories of ‘philosophy of palliative care’, ‘emotional labour of pain management’ and ‘team work’ appear to be central to the collaboration process. Suggestions of areas of practice worthy of further research have been made and implications for practice have also been identified.
The nature of terminal malignant bowel obstruction and its impact on patients with advanced cancer
Authors: Gwilliam Bridget , Bailey Christopher
Published: May 2014

Patients with bowel obstruction due to advanced cancer often have a poor prognosis and suffer distressing symptoms that can be difficult to manage. Research to date has focused on medical interventions and the measurement and control of symptoms. Little attention has been given to patients’ perceptions of their quality of life or the impact of their illness. This study aimed to explore patients’ lived experience of bowel obstruction. Semi-structured interviews were conducted with ten patients with bowel obstruction due to gynaecological or gastric cancer. Data analysis was based on an adaptation of Giorgi (1975) and Parse et al’s (1985a,b) phenomenological method. Findings suggest that the ‘meaning’ of being unable to eat is more significant for patients than the nutritional or biological loss of food. For some patients, bowel obstruction marks a process of transition from life to death which is characterized by a sense of social disengagement and disrupted identity. Interviews highlighted aspects of the nurse–patient relationship that were therapeutic in their own right.
Carers bear burden of home care
Authors: McClement Susan
Published: May 2014

As I sat down to write this, I was reflecting upon the passing of a beloved aunt who recently died from colon cancer. She was a retired nurse who wanted to die at home. Her expressed desire is not uncommon. Research suggests that most terminally ill individuals would prefer to die at home, or at least to spend as much of their remaining time there as possible. Indeed, the ability to achieve ‘death at home’ is an expressed goal of many palliative care programmes, and is used as an outcome measure in the provision of quality palliative care in the community.
Developing effective palliative care within a prison setting
Authors: Wilford Tricia
Published: May 2014

A joint report by the UK prison service and the National Health Service (Department of Health (DoH), 1999) suggested that a ‘formal partnership’ between the two organizations would enhance the health care of people in prison. Through such a partnership it is hoped that prisoners will be able to receive the same level of care as those who are treated within the wider community. Nurses attempting to achieve the goals of palliative care within a prison setting may encounter environmental constraints to their work and may be further deterred by their own lack of specialist knowledge. This article discusses how such problems can be overcome through the professional development of prison nurses.
Subcutaneous drug infusions: a review of problems and solutions
Authors: Mitten Trevor
Published: May 2014

Subcutaneous drug infusion using a portable syringe driver has had a significant impact on patient comfort in palliative care. It permits the continuous delivery of a range of drug therapies, so bypassing problems of dysphagia, weakness and the inability of many patients in the terminal phase to take oral medication. The devices are not problem-free, however. Mechanical problems, reactions at the infusion site and difficulties with the mixing of drugs in the syringe are all widely recognized. This article reviews some general issues with the operation of portable syringe drivers, and discusses a range of potential problems and their solutions.
The experience of transition to palliative care services: perspectives of patients and nurses
Authors: Ronaldson Susan , Devery Kim
Published: May 2014

The care of patients whose illnesses cannot be cured places many stresses on health professionals (both generalist and specialist), and more importantly on patients and families. The complexities for all concerned in the process of referral to palliative care services should not be underestimated, however there is evidence that the referral process could be better handled by all health professionals. With greater understanding of the dynamics of care, the crisis of living with an incurable illness and dying can be lessened for patients. This article reports on a qualitative research project undertaken at a large metropolitan palliative care service and its referring public hospital. Patients and nurses were interviewed to identify issues relating to the care of patients and families newly referred to palliative care. The findings of this research identify themes in relation to the transition of patients from acute curative to palliative care services, e.g. pace and timing of the transition, fear and (mis)understanding, accepting palliative care, information and education on palliative care, and peer support and supervision for palliative care nurses.
The need for palliative care for patients with non-cancer diseases: a review of the evidence
Authors: Luddington Lisa , Cox Sarah , Higginson Irene , Livesley Brian
Published: May 2014

The palliative care needs of patients with cancer are understood and managed well by specialist palliative care services. Patients dying of non-cancer diseases are rarely offered these services. A literature review was conducted to determine the physical and psychosocial problems of patients dying from non-cancer diseases. Studies were identified using a systematic keyword search of six electronic databases. Fourteen studies were identified and assessed according to rigour of design. Findings suggest that some patients dying of non-cancer have needs comparable with those dying of cancer. Low response rates, subject bias, and measurement bias mean that findings should be viewed with caution. More prospective, rigorously designed research is necessary to identify which patients with non-cancer diagnoses may benefit from specialist palliative care.
Delirium in the terminally-ill cancer patient: aetiology, symptoms and management
Authors: Brown Sarah , Degner Lesley F
Published: May 2014

Delirium is a frequent and serious clinical problem in the terminally-ill cancer patient. Multiple dimensions of delirium make definition, measurement, and assessment of it challenging in clinical nursing practice. Assessment and management of delirium requires knowledge of the diagnostic criteria for it, aetiology, signs and symptoms, and nursing interventions. Four delirium assessment scales determined to be useful in assessing patients with terminal illness are reviewed. The use of a delirium assessment instrument in routine nursing assessments would be important for the nurse’s early detection of delirium so that interventions to reverse the causes of delirium could immediately be implemented.
Log on and learn: educational resources on the internet
Authors: Gamlin Richard
Published: May 2014

The following websites are general palliative care sites with an educational component. Useful starting points for anyone wishing to explore general palliative care issues, they contain links to other internet-based resources. They may be of particular use to practitioners looking for materials on which to base their teaching sessions or programmes.
The use of epidural and intrathecal analgesia in palliative care
Authors: Day Ruth
Published: May 2014

Oral analgesics and adjunctive medicines will be used to meet the needs of most palliative care patients in terms of pain relief. However, for a small number of patients, this will not be adequate for satisfactory relief from pain, resulting in a lower quality of life. For such patients, using some of the more ‘technical approaches’ to pain relief, e.g. epidural or intrathecal analgesia, can prove beneficial. Taking the anatomy of the spinal space into consideration, this article will present the indications and contraindications for spinal analgesia, as well as drugs used and the most appropriate methods of drug administration.
Cancer patients’ experiences and evaluations of aromatherapy massage in palliative care
Authors: Dunwoody Lynn , Smyth Angus , Davidson Robin
Published: May 2014

Many patients suffering from cancer make use of complementary therapies, with aromatherapy being a popular choice. Quantitative studies, using questionnaire data, have shown that aromatherapy may reduce psychological distress and enhance symptom control in cancer patients. However, little is known about the personal meanings patients associate with the therapy. This study explored the patients’ experiences of aromatherapy using of a focus group interview. Eight themes emerged from the analysis, six of which have been acknowledged to some extent by previous authors: de-stressing effects of aromatherapy, the counselling role of the aromatherapist, aromatherapy as a reward, patient empowerment, communication through touch, and negative aspects of the service. Two apparently new themes emerged concerned with security of context (where the aromatherapy took place) and preconceived perceptions of the value of aromatherapy as a treatment for cancer patients. The implications of the findings are discussed in relation to the perceived role of counselling, collaborative practice and training in complementary therapies.
Factors associated with falls in an inpatient palliative care unit: an exploratory study
Authors: Goodridge Donna , Marr Hubert
Published: May 2014

In one inpatient palliative care unit falls were identified as a frequent and distressing, yet potentially avoidable, concern. The unit had the highest rate of falls in this long-term care setting, exceeding even that of dementia care units. No literature could be identified that examined falls in the palliative care population. The objective of the exploratory study was to examine factors associated with falls through retrospective archival data collection. Detailed information was collected on all 177 falls that occurred in the unit in 1999. Data were also gathered on patients who had not fallen for comparison. Analysis was conducted comparing risk factors of those patient who fell once and those who fell multiple times. It was found that advanced age, longer length of stay and a previous history of falls may be risk factors for future falls. Patients who fell multiple times had less symptom distress than patients who fell once.
Some different approaches to spirituality and religion
Authors: Smyth Dion
Published: May 2014

It is impossible to deny the Judaeo-Christian ethic, which witnessed the establishment of the modern hospice and, to some extent, palliative care movement in the UK. The plethora of units named after saints bears witness to this. Nevertheless, although it might seem improper to be considering this at this festive time, we live in a largely secular age where modern multicultural society reflects an increasing awareness and interest in the influence of differing world faiths and disparate expressions of spirituality.
Should we give palliative care to all those that need it?
Authors: Chilver Karen
Published: May 2014

What are the limits of palliative care? Recently, I was faced with the dilemma of whether or not to offer palliative care to an imprisoned animal rights activist who was refusing to eat. He was in renal failure as a consequence.
Improving the management of breathlessness using a clinical effectiveness programme
Authors: Hoyal Claire , Grant Jean , Chamberlain Fran , Cox Rosemary , Campbell Tanya
Published: May 2014

Breathlessness represents a significant problem for the person with advanced cancer. Uncontrolled breathlessness ranks highly in terms of uncomfortable symptoms experienced, causing pain and distress to the patient and resulting in significant anxiety to their carers. The key to the provision of effective care lies in the informed application of the nursing process, underpinned by a sound knowledge base in relation to the nursing management of breathlessness. Theoretical knowledge enables nursing staff to offer appropriate interventions for the management of breathlessness in collaboration with other members of the multidisciplinary team. This article will discuss the causes and management of breathlessness in the person with advanced cancer; the discussion focuses on the application of research-based interventions and the evaluation of clinical outcomes in a UK clinical governance context.
The measurement, causes and effective management of cancer-related fatigue
Authors: Stone Patrick
Published: May 2014

A review of research into cancer-related fatigue undertaken since 1995 is presented. The manner in which such fatigue varies with cancer diagnosis, stage of disease and anti-cancer treatment is discussed, and the causes of cancer-related fatigue are categorized according to whether they are cancer-specific, common to other chronic illnesses or common to the general population. Interventions to alleviate fatigue are discussed in terms of whether they are pharmacological or non-pharmacological in nature. It is concluded that cancer-related fatigue is a common problem with a major impact on quality of life. It shares a common aetiology with other forms of fatigue. Graded aerobic exercise has been shown in randomized controlled trials to be an effective intervention in specific patient groups. Less direct evidence supports the use of psychological interventions, but there is very little evidence to support the use of pharmacological treatment, with the possible exception of erythropoietin therapy for anaemic patients undergoing chemotherapy.
Music therapy in palliative care: current perspectives
Authors: O’Kelly Julian
Published: May 2014

As the music therapy profession has developed internationally over the last 25years, so has its role in palliative care. Music is a highly versatile and dynamic therapeutic modality, lending itself to a variety of music therapy techniques used to benefit both those living with life-threatening illnesses and their family members and caregivers. This article will give a broad overview of the historical roots of music therapy and introduce the techniques that are employed in current practice. By combining a review of mainstream music therapy practice involving musical improvisation, songwriting and receptive/recreational techniques with case material from my own experience, this article aims to highlight the potential music therapy holds as an effective holistic practice for palliative care, whatever the care setting.
Producing user-friendly patient information
Authors: Gamlin Richard
Published: May 2014

This month I will take a detour from the clinical aspects of pain and symptom management and look at what the internet can offer busy people who produce written materials to aid patient understanding. Those who have attempted to write patient information should recognize that this is far from an easy task. Unfortunately not all of us realize that what we produce cannot always be understood by patients and carers. Consequently those we seek to inform may remain ignorant, worried, frightened and confused rather than informed and content. The following websites will help you to produce readable informative material.
Producing user-friendly patient information: part 2
Authors: Gamlin Richard
Published: May 2014

Continuing with the theme of information, this month I have reviewed websites that provide palliative care information and help us to develop and write information for patients and families. Last month I looked at sites that can be helpful to review the finished or developing product. This month I will look at sites that are indispensable during the development stage.
The risk assessment of bereavement in a palliative care setting
Authors: Melliar-Smith Caroline
Published: May 2014

An effective bereavement risk assessment document used in a palliative care setting was identified which could ensure bereavement support for those in need, be it a family or carer group. The nursing team were used as assessors with a system to indicate carers’ and relatives’ immediate need following the death of a patient. The aim of this bereavement risk assessment system was to lessen the possible long-term effects of unresolved grief for family and carers of patients who died within a hospice setting. The assessment document is a useful education tool for nurses, allied support professionals and bereavement support volunteers in their work with grief and loss.
Community specialist palliative care: experiences of patients and carers
Authors: McLoughlin Patricia Anne
Published: May 2014

Specialist palliative care provides a range of services for patients and their carers who have complex needs. There is a need to identify what patients and carers gain from contact with the specialist palliative care nurse (SPCN) and what aspects of that care have a positive impact on their quality of life (QoL). The aims of the study were: to gain insightful and credible accounts of participants’ experiences of the SPCN; to consider those dimensions of care which impact on satisfaction; to discover whether the SPCN provides improvements in QoL and to explore whether experiences match expectations. A qualitative approach focused on the experience and individual meaning; it is the individual narratives produced by each participant that are the rich and interesting outcomes of this study. Both patients and carers reported satisfaction at being given time and being listened to, with the interviewees using words and phrases such as ‘confidence’, ‘trust’, ‘knowledge’, ‘listens to’ and ‘a sense of being there’. The study shows the patient and carers’ lack of knowledge about specialist palliative care while confirming the positive influence of the SPCN.
Can multidisciplinary guidelines improve the palliation of symptoms in the terminal phase of dementia?
Authors: Lloyd-Williams Mari , Payne Sheila
Published: May 2014

Dementia is a progressive terminal disease. More than 95% of patients will require 24-hour care either in long-stay hospital wards or in nursing homes at the end of life. There are many issues in the care of patients with dementia that parallel palliative cancer care, but relatively few patients with dementia currently access palliative care. Following an initial audit that found that many patients dying with dementia had symptoms that were not palliated, multidisciplinary guidelines were developed jointly by medical and nursing staff working in psychiatry for older people, together with pharmacy and palliative care staff. Following the implementation of guidelines, there was a significant decrease in the prescribing of antibiotics in the last 2weeks of life and patients were much more likely to be prescribed analgesia, including opiates. This small study suggests that when developed collaboratively, multidisciplinary guidelines can have a positive impact on palliative care for non-oncology patients.
Do interventions make a difference to bereaved parents? A systematic review of controlled studies
Authors: Rowa-Dewar Neneh
Published: May 2014

The provision of bereavement support for parents who have lost a child is based on the assumption that it will lead to better subsequent adjustment. To determine the validity of this assumption, a systematic review of studies was undertaken, looking at bereavement support programmes for parental grief between 1990 and 2001. This review focused on controlled studies. The exclusion of non-controlled studies, case studies and those using only participant evaluation as an outcome measure, left only three studies. No overall benefit for the interventions was shown. However, for highly distressed mothers, psychological symptoms and marital dysfunction were significantly reduced. Disparities in the findings, such as the effects of interventions on fathers, may be explained by flawed methodology. Applied to practice, these findings suggest that only some bereaved parents benefit from bereavement support programmes. A targeted approach may therefore be the best use of resources.
A commentary on ‘An integrated care pathway for the last two days of life’
Authors: Kelly Daniel
Published: May 2014

In this article commentary Daniel Kelly discusses some issues arising from the use of an integrated care pathway and variance reporting in Wales in the UK
Colon cancer resources
Authors: Smyth Dion
Published: May 2014

Bowel cancer affects hundreds of thousands of people annually worldwide, and is the second biggest cancer killer in the UK. Increased awareness and early detection can improve the outcome of the disease, while improved therapeutic interventions, such as advances in surgical technique and chemotherapy, has increased survival and quality of life. This month’s Web Words reviews sites that may inform, advise and educate palliative care practitioners about the issues relating to this significant cancer.
Reflections on a year at IJPN and thoughts for the future
Authors: Aranda Sanchia , Cooley Candy
Published: May 2014

As our first exciting year as consultant editors draws to an end we have come together again to reflect on our experience. From our perspective the year was an excellent one. Subscriptions are increasing, the number of articles submitted for review is increasing and we have organized our first conference for the International Journal of Palliative Nursing as consultant editors. Articles have been received for review from a wide range of countries, clinical settings and topics, which bridge research, evidence-based practice, comment and opinion – a nice mix in our view. However, we are always looking for new authors and new ideas, so please contact us as we would be delighted to assist you in getting your work to print. As Candy often says to her students, ‘there is nothing quite like seeing your name in print!’.
Non-malignant conditions continued: HIV/AIDS, renal disease and multiple sclerosis
Authors: Smyth Dion
Published: May 2014

Palliative care is multi-professional and interdisciplinary care that aims to relieve a patients’ suffering and improve their quality of life. The care and management of patients with progressive, non-cancerous, medical conditions, may not have always been afforded the opportunity of access to hospice and specialist palliative care services, but this is changing. This month’s web words completes the recent review of resources relating to some non-malignant conditions.
Needs assessment: a tool for hospice expansion
Authors: Knight Anneyce , Meek Fraser
Published: May 2014

This article outlines the strategies adopted by a voluntary hospice to identify the local needs for hospice care and summarizes the needs assessment findings. Since the advent of specialist palliative hospice inpatient services, only a small proportion of dying patients have been admitted to hospices. Recent UK government initiatives have promised extra, or equalized, funding and perhaps a widening of the criteria for admission. The work reported here was based on Stevens and Raftery’s (1997) protocol for needs assessment and Higginson’s (1997) review of the components of health-care needs in palliative and terminal care. These were used to identify local requirements and provide evidence for expansion of the hospice and the services it provides to the local health economy.
The quality of spiritual care - developing a standard
Authors: Hunt John , Cobb Mark , Keeley Vaughan L , Ahmedzai Sam H
Published: May 2014

Spiritual care is an important aspect of holistic care. However, it is seldom the subject of audit, or included in quality standards. This article reports on the work of the Trent Hospice Audit Group (THAG) into the development of a quality standard for the assessment, delivery and evaluation of spiritual care. The standard was drafted by a multidisciplinary team and circulated among the THAG user group and other interested specialists, and subsequently revised. Three levels of assessment are defined and the different levels of expertise needed for these assessments identified. Education has been highlighted as a key issue in enable effective use of the standard package. Although acknowledging possible limitations and the importance of professional judgment, the standard should help provide a consistent approach to assessment, care planning and outcome review of spiritual care.
The creative arts in palliative care. Part 2: a look at music therapies
Authors: Smyth Dion
Published: May 2014

Hearing is the first sense to be developed and the last to deteriorate. From our very first moments, music has the ability to stimulate or placate, comfort or communicate. We use musical compositions to evoke emotion and memory or reflect and express thoughts and feelings. It should not, therefore, be too surprising to find that music therapy is increasingly becoming integrated into the field of palliative care. This month’s Web Words reviews several sites providing an insight into this interesting and valuable means of therapy.
Application of the doctrine of double effect in end stage disease
Authors: Jolly Maggie , Cornock Marc
Published: May 2014

The aim of this article is to explore the doctrine of double effect and to identify whether it is appropriate to use the doctrine, and if so when, in end stage disease. The legal principles of the doctrine of double effect will be explored through the examination of three recent cases involving the death of a patient in the UK. The legal distinction between the doctrine of double effect and the intentional act of homicide will be discussed.
The last 48 hours of life: a case study of symptom control for a patient taking a Buddhist approach to dying
Authors: Barham Denise
Published: May 2014

Caring for a patient dying of cancer can, at times, be extremely difficult. Sarah was 39 years old when she died, survived by her husband and two children aged 6 and 4 years. During the weeks leading up to her death, Sarah held extensive discussions with family and the multidisciplinary team. Her goal was to live the remainder of her last few hours as comfortably as possible and to die a ‘peaceful death’. Terminal care is an important phase of life, one in which individuals have the right to expect quality of care to ensure that their death occurs with dignity. Sarah practised Buddhism on a daily basis. Issues of spirituality, serenity and peacefulness in dying were very important to her to ensure a good rebirth.
An out-of-hours protocol for community palliative care: practitioners’ perspectives
Authors: King Nigel , Thomas Keri , Bell Dennise
Published: May 2014

Much of palliative care takes place in the patient’s home. Out-of-hours service provision can be an area of concern. With the aim of improving this service, the former Calderdale and Kirklees Health Authority introduced an out-of-hours protocol for palliative care in the community. After 1 year the authors examined the experiences of primary care practitioners in using the protocol. Twenty district nurses and 15GPs from 25 general practices in Calderdale, Huddersfield and North Kirklees took part in the study, which involved face-to-face group and individual telephone interviews. Practitioners felt that the out-of-hours protocol had made a positive contribution to palliative care in the community and that the out-of-hours handover form played a key role in improving communication and the coordination of services. For many participants, the protocol encouraged a more anticipatory approach to care and enabled better access to drugs and to specialist advice. The main areas of concern related to updating patient information on the handover forms, and to shortcomings in the support offered to carers. Future developments should address these issues. Although recognizing the dangers of generalization from research of this type, the findings offer encouragement to others considering similar schemes.
Multidisciplinary team leadership
Authors: Nyatanga Brian
Published: May 2014

It is often asked who should lead the multidisciplinary team (MDT) in palliative care. Exploration is needed into whether there are criteria for leading and who determines these. An old acquaintance of mine once remarked that it is always the doctor who leads the MDT because of the medicalization of dying; it is the doctor who chairs the MDT meetings and the doctor who makes the decisions. Although the above assertion may have the resonance of a tired argument and misplaced assumptions, this still occurs in places. Most doctors would deny that their efforts culminate in an inappropriate medicalization of dying and death (Gannon, 2001) and are only an attempt to manage medically-orientated symptoms as part of total patient care.
Influence of pain and quality of life on desire for hastened death in patients with advanced cancer
Authors: Mystakidou Kyriaki , Parpa Efi , Katsouda Emmanuela , Galanos Antonis , Vlahos Lambros
Published: May 2014

Objective To assess the relationship between quality of life, pain and desire for hastened death in advanced cancer patients.

Methods 120 Greek patients with advanced cancer were interviewed with the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire C30 version 3.0 (EORTC QLQ-C30), the Greek Brief Pain Inventory (G-BPI), the Greek Hospital Anxiety and Depression Scale (G-HADS) and the Greek Schedule of Attitudes toward Hastened Death (G-SAHD).

Results Statistically significant associations were found between total G-SAHD scores and scores for the worst level of pain in the previous 24 hours (G-BPI3)(r=0.279, P=0.002), and between total G-SAHD scores and scores for the level of pain relief obtained in the last 24 hours (G-BPI8) (r=-0.326, P=0.0005). The strongest correlations were found between G-SADH and emotional functioning (r=0.569, P<0.0001) and global quality of life (r=-0.331, P<0.0001) from EORTC QLQ-C30. In multivariate analyses, emotional functioning, social functioning, financial impact, and the interference of pain in general activity and mood were significant predictors of G-SAHD (all P<0.0001).

Conclusion Quality of life and pain appeared to have a statistically significant relationship with desire for hastened death. Adequate palliative care should alleviate pain and the desire for hastened death, improving quality of life.
Survey of UK hospice and specialist palliative care adult bereavement services
Authors: Field David , Reid David , Payne Sheila , Relf Marilyn
Published: May 2014

Method Postal survey of UK hospices and specialist palliative care services providing adult bereavement support.

Analysis Descriptive statistics and content analysis of free text replies.

Results Three hundred services were identified, with 248 valid responses (83%). Of these, 198(80%) were in England and 180(73%) were associated with inpatient units. Most had been in existence for at least 10 years. Paid staff were used by 219 services (88%) and volunteers were involved in 168 services (68%). A small minority did not provide supervision for their bereavement staff. A quarter of services had insufficient staff. The most common activities were individual support, telephone support, written information, memorialization events and group support. Ninety five services (43%) formally assessed the need for individual support. One hundred and fourteen services (51%) had no formal mechanisms for bereaved people to provide feedback about such support. Formal audit and evaluation of bereavement services was uncommon.

Conclusions The main elements of bereavement support can be identified but their combination varies. Assessment of people for individual support varies and the small size of many services may inhibit the effective delivery of support. Audit and evaluation of bereavement support may need to be developed.
Time to debunk some palliative care myths
Authors: Pennell Mary
Published: May 2014

I work in a district general hospital where palliative care needs exist on every ward. At every hour of the day, patients are dying without the benefits palliative care knowledge could bring. It has been estimated that 70–80% of the surgery in the hospital is performed for cancer-related reasons and that on every ward there are people with cancer, often with a palliative prognosis. Of all the common conditions that the hospital sees, dying is the most common.
Evaluation of a night respite community palliative care service
Authors: Kristjanson Linda J , Cousins Kerry , White Kate , Andrews Lara , Lewin Gill , Tinnelly Catherine , Asphar Dianne , Greene Ros
Published: May 2014

A three-phase project was undertaken to develop and evaluate a community night respite palliative care service for patients and family carers. An assessment tool to identify those most in need of night respite was developed and tested. The tool was reliable and feasible for use in practice. Care aides were trained to provide night respite. Fifty-three patients participated over 11 months. Findings revealed the types of patients and families most in need of night respite, the amount of respite needed, and location of death. There is evidence that patients who would have been transferred to an inpatient setting for end-of-life care were able to die at home with the support of the night respite service. Families were extremely appreciative of the service and a limited cost comparison suggested costs were lower than if patients had been transferred to hospital and/or inpatient hospice care. Recommendations for practice are offered.
Development of a pain management programme for family carers of advanced cancer patients
Authors: Oldham Lynn , Kristjanson Linda J
Published: May 2014

This article reports the first phase of a three-phase study to develop and test a pain education programme for family carers of patients with advanced cancer. The purpose of this phase was to develop the pain education programme. Interviews were conducted with 19 family carers to elicit their perceptions about the components, content, amount and timing of an educational programme that might be useful in educating them about pain management. Interviews were taped, transcribed and content analysed. Family carers reported knowledge deficits regarding pain, medications, comfort therapies and general comfort measures. Strategies for learning were described. Findings from these interviews, together with results published in the literature were structured into a formal pain management programme. This programme has been pilot tested and evaluated using a randomized clinical trial.
Family carers’ experiences of out-of-hours community palliative care: a qualitative study
Authors: King Nigel , Bell Dennise , Thomas Keri
Published: May 2014

Carers’ feelings of uncertainty and anxiety can be particularly acute out-of-hours, when they may not have access to familiar sources of professional help and advice. The present study used qualitative semi-structured interviews to explore carers’ experiences of out-of-hours care and support services. Fifteen bereaved carers in the Calderdale and Kirklees area were interviewed, and the interview transcripts analysed thematically. In general, carers felt well supported out-of-hours, especially by the nursing services. They appreciated opportunities to develop some degree of personal relationship with those they saw out-of-hours. However, in some cases problems were apparent. These were associated with poor provision of information, inadequate communication with carers, difficulties in accessing night-sitter services, or the inflexibility of services. The findings underline the importance of primary care practitioners taking an anticipatory approach to community palliative care.
Responding to persistent requests for assistance in dying: a phenomenological inquiry
Authors: Schwarz Judith K
Published: May 2014

Little is known about how American nurses understand and respond to requests made by decisionally capable patients for assistance in dying. This article is based on a broader qualitative study first reported elsewhere (Schwarz, 2003). The study used phenomenological interpretation and analysis of stories told by 10 nurses who worked in home hospice, critical care, and HIV/AIDS care settings. Persistent requests for assistance in dying were relatively uncommon, but when heard, participants provided the following responses: refusing assistance, administering palliative drugs that might secondarily hasten dying, tacitly permitting and not interfering with patient or family plans to hasten death, and actively providing direct assistance in dying. Nurses’ responses were context-driven; they did not seek guidance from professional codes of ethics or colleagues. Secrecy and collusion were routinely practiced. Few participants unequivocally agreed or refused to help patients die; most struggled to find morally and legally acceptable ways to help patients die well. Regardless of how they responded, nurses who believed they had hastened death described feelings of guilt and moral distress. Health-care professionals who provide care for symptomatic dying patients need opportunities to meet with supportive colleagues, to share the experience of troubling cases and of moral conflict, and to be supported and heard in a ‘safe’ environment.
The lived experience of constipation in cancer patients in palliative hospital-based home care
Authors: Friedrichsen Maria , Erichsen Eva
Published: May 2014

Constipation is a common and well-studied symptom in palliative care. Most previous studies have focused on the frequency and management of constipation. The current study aimed to investigate the lived experience of constipation among cancer patients in palliative hospital-based home care. Eleven cancer patients admitted to a hospital-based home care unit in Sweden who had experienced constipation participated in this study. Semi-structured interviews were conducted and a qualitative, phenomenological approach was used. Three themes emerged: bodily suffering; mental preoccupation and a reminder of death; and avoidance and social isolation. The experience of constipation was described as an extensive complete person- experience that must be prevented. To prevent unnecessary suffering nurses need to be proactive in the assessment of constipation.
Elderly palliative care cancer patients’ descriptions of hope-fostering strategies
Authors: Duggleby Wendy , Wright Karen
Published: May 2014

The purpose of this study was to describe perceptions of hope-fostering strategies of elderly patients with advanced cancer receiving palliative home care. Using a qualitative thematic research design, saturation was reached with 10 palliative home care patients (mean age 75 years) (five males and five females). Face-to-face audiotaped interviews were conducted in the participants’ homes. Participants described hope for: ‘not suffering more’, ‘living life to the fullest in the little time I have left’, a peaceful death, life after death and ‘hope for a better life in the future’ for their family. Using Lubrosky’s thematic analysis, themes of fostering their hope were: leaving a legacy, achieving short-term goals, ‘turn your mind off’, supportive family and friends, symbols of hope, positive thoughts, honest information and symptom control.
Access and referral to specialist palliative care: patients’ and professionals’ experiences
Authors: Bestall Janine C , Ahmed Nisar , Ahmedzai Sam Hjemeland , Payne Sheila A , Noble Bill , Clark David
Published: May 2014

The aim of this study was to explore the reasons why patients and families are referred to specialist palliative care. Semi-structured interviews were undertaken with patients, and professionals from primary care and specialist palliative care services in the north of England. A content analysis of the transcripts was undertaken, key issues were identified and common themes grouped. Twelve professionals working in specialist palliative care, three GPs, six community nurses and thirteen patients were interviewed (n=34). Five key themes are reported: reasons why patients are referred to specialist palliative care; reasons why patients are not referred to specialist palliative care; timeliness of referrals; continuity of care; and use of referral criteria. It was found that the professionals in primary care would like more training and education about how to refer patients to specialist palliative care and how to deal with issues of death and dying. The patients were generally satisfied with the service but wanted to be able to be supported at home in their final days. Further training and education may improve the knowledge of professionals who refer patients to specialist palliative care. There are currently no standardized criteria in the UK to determine when a referral should be triggered. The development of a set of standardized referral criteria may be useful in aiding a referral decision.