bluuebunny/crossref_metadata_2025 huggingface dataset:
Cataract blindness in older people and sight restoration: a reflection
Authors: Williamson Swapna , Seewoodhary Ramesh
Published: May 2014

Cataract is the main cause of preventable blindness globally; the World Health Organization (2010) estimates that cataract is responsible for 51% of world blindness, which represents approximately 20 million people. Surgical removal of cataracts is the only treatment that restores vision; it plays an important role in transforming quality of life and facilitates independent living. Visual impairment causes physical and emotional distress, and the role of healthcare professionals is crucial in ensuring patients receive the optimum care while being empowered. In this article, the impact of cataract blindness on an older patient and her family is discussed; this reflective account explores and analyses the care pathway of a 78-year-old, female, Indian patient who had bilateral cataract surgery in December 2012 and describes how this has affected her quality of life.
From iPhones to eye care: novel uses of smartphones in ophthalmology
Authors: Machin Heather , Chakrabarti Rahul , Perera Chandrashan Mahendra
Published: May 2014

Ophthalmology professionals are finding novel ways to utilise new telehealth smart phone technology, with the intent to support and improve patient care outcomes. In this article, Heather Machin, Rahul Chakrabarti and Chandrashan Mahendra Perera discuss applications of telehealth in ophthalmology.
Outcome measures used for the assessment of blepharospasm patients treated with botulinum toxin
Authors: Parker Marina C , Waddingham Paula
Published: May 2014

Aim

To undertake a literature review to assess outcome measures in the treatment of blepharospasm with botulinum toxin. The findings were then used to redesign the documentation records for blepharospasm botulinum toxin clinics.

Method

A MEDLINE search was undertaken from 2000–2013, which produced a limited number of papers that included the research methods and outcomes (n=18) for blepharospasm treated with botulinum toxin.

Results

The most frequently used outcome measures can be grouped into four main categories: assessing severity; force of eyelid closure; functional impact of disease; and efficacy. In addition, the latency and duration of treatment effect were common themes in the literature.

Conclusions

The main outcome measures had been validated, while the more locally designed ones had not, and more complicated tools had been designed for use in a research setting rather than busy outpatient clinics. The tools selected for use within the ophthalmology clinic were easily incorporated into the documentation and were straightforward to use. As a result, usability by staff was high.
The eye in virology
Authors: Robins Julian , Taylor Simon RJ , Lightman Sue
Published: May 2014

This article outlines the ocular complications of viral infection. The emphasis is on the most common viruses encountered by the physician, and their clinical features and treatment are discussed while demonstrating the variation and often significant sequelae of ocular viral infection.
The management of amblyopia in children: the results of a national survey of orthoptists
Authors: Bienkowska Anna , Starbuck Ann , Churchill Amanda
Published: May 2014

Background

Amblyopia is the most common cause of monocular visual loss and an important cause of avoidable blindness. It is usually diagnosed in young children and the condition is reversible, although if left untreated significant visual impairment can occur. Conventional treatment methods involve refractive adaptation followed by patching or atropine therapy and it is well documented that good compliance is key to successful treatment. Although many studies and reviews have been published on amblyopia treatment, there are no national guidelines to assist management.

Aims

To report the results of a national survey of orthoptists, to outline methods of treatment in clinical use and whether this reflects the published evidence base, and to determine the scale and management of non-compliance.

Methods

A literature review was conducted using Medline and the Cochrane Database Of Systematic Reviews. A survey was performed by the British and Irish Orthoptic Society and the responses analysed.

Results

A total of 340 questionnaire responses were collected. Analysis revealed that clinical practice varied widely and, in many cases, did not reflect the evidence from published studies on the management of amblyopia and non-compliance. Noncompliance was estimated to be 0–10% in most practices surveyed.

Discussion

This article uses the evidence base available to create guidelines to assist orthoptists in the management of amblyopia in children and proposes a management strategy for non-compliance.
The challenge of providing nutritional support to the dying
Authors: Holmes Susan
Published: May 2014

Dying patients are often unable to take food or drink; caregivers must then decide whether to provide nutrition/hydration by artificial means. Providing sustenance to such patients is an area of ongoing controversy not least because of the difficulties associated with determining life expectancy but also because of the need to promote patient comfort and well-being. Decisions relating to the provision of nutritional support must be based on the needs, wishes and expectations of both patients and their families. They must also take into account the legal and ethical dimensions of care provision and the need to ensure that the care provided is based on a true examination of the risks, benefits and burdens to the individual. This paper considers these issues concluding that any therapeutic measures considered must be both individualised and realistic recognising that the prime goal must be the patient’s comfort; prolonging his life is of secondary concern.
Lymphoedema - a challenge for all healthcare professionals
Authors: Todd Jacquelyne E
Published: May 2014

Lymphoedema is a poorly understood condition which frequently remains undiagnosed. People with a chronic swelling are often referred to many medical departments and have to seek the opinion of a number of doctors in their attempt to find treatment. A lack of evidence on the prevalence of chronic oedema has led to the assumption that this condition is rare — a belief contrary to that held by those involved in treating patients. The time and resources required to treat new and existing patients has led some service providers to restrict referral for the treatment of lymphoedema. Access to lymphoedema treatment is largely determined by where the patient lives. Professionals working in the field are clear that lymphoedema and its treatment demand a higher profile within the NHS and that everyone has the right to accessible and effective treatment (British Lymphology Society, 1997a). This article provides an outline of lymphoedema and its treatment and discusses some of the reasons why the significance of this condition is so poorly understood. The author highlights a role for healthcare professionals in the prevention of lymphoedema and the reduction of its effects on the patient.
Palliative radiotherpay for advanced cancer symptoms
Authors: Campbell Tanya , Farrell Wendy
Published: May 2014

Patients with advanced cancer typically present with a range of distressing symptoms related to their disease. Radiotherapy can achieve symptom relief in the late stages of cancer, thereby offering the potential to improve the patient’s quality of life. However, radiotherapy has a potential toxicity, which may be experienced by the patient during and after treatment. Good palliative care is based upon the maintenance of balance between the management of symptoms and the development of toxicity. This article describes the use of palliative radiotherapy according to the latest evidence. Four treatment situations are used to make the links between theory and clinical practice. The article focuses on the nursing role in managing palliative radiotherapy treatment, and offers practical recommendations and suggestions for supporting the patient with cancer. It is proposed that the timely provision of information, education and pro-active nursing interventions are the key to successful management.
Conducting research with the terminally ill: challenges and considerations
Authors: Beaver Kinta , Luker Karen , Woods Simon
Published: May 2014

This article explores some of the pertinent issues that arose while conducting a research study involving people with a terminal illness, their lay carers and bereaved carers. Ethical considerations are of paramount importance when carrying out research with vulnerable groups; and issues such as approaching potential participants without adding to their distress and anxiety, and obtaining consent without coercion need careful consideration. Adhering to a stringent research design, while preferable for the research agenda, is not always compatible with the ethical concepts of beneficence and non-maleficence. The potential benefits to vulnerable persons of being involved in such work may not be immediately obvious although altruism, in wanting to help others in a similar situation in the future, and the therapeutic effect of telling one’s story may have indirect benefit for some. However, it may not be possible for the researcher to ever fully ascertain the actual benefit and harm incurred in carrying out such work.
‘Help is here’ on the web
Authors: Sweeney John
Published: May 2014

At last, Macmillan Cancer Relief arrive on the web with a well crafted and easy to use site describing the major areas of their work. The site also presents some valuable information for patients and relatives drawn from their wide range of literature. Included here are the Charity’s aims and history along with information about the various professionals whom they support in the UK.
Increasing IJPN’s international focus
Authors: Wilkinson Susie
Published: May 2014

It is with great pleasure that I introduce myself as the Editor in Chief of the International Journal of Palliative Nursing. I feel honoured to have been appointed to the post and together with the Editor and the Editorial Board, will strive to move IJPN forward into the new millennium, to raise the profile of palliative nursing and advance the knowledge base of palliative care.
Seeking the user perspective in palliative care
Authors: Tower Barbara Ann
Published: May 2014

Palliative care services are entering a new era, with a shift in emphasis from the traditional forms of hospice care to the development of community services that enable people to be cared for at home. The importance and value of seeking the views of service users on palliative care services should not be underestimated when seeking to improve palliative care services. However, research into this area is complex; there are many difficulties associated with data collection and ethical issues surrounding research on terminally ill people (Beaver et al, 1999; Seymour and Ingleton, 1999). These problems need to be confronted if major developments in service delivery are to improve the quality of the services and become more efficient and cost-effective.
Coping with loss: consequences and implications for care
Authors: Parkes Colin Murray
Published: May 2014

Losses of one sort or another are commonly encountered by patients, their families and the staff who care for them within palliative care. Nurses have important roles to play in preparing people to cope with loss, identifying those who are likely to develop psychological difficulties and ensuring that they receive adequate counselling and care to prevent or mitigate these difficulties. Worrying and grieving are important processes which need to be acknowledged and allowed to develop before and after loss, however, such processes are often avoided. At each stage during loss and grief, members of the healthcare team can help to foster confidence and security without which it is hard for people to face painful realities. The right help, given to the right people at the right time often enables them to transcend loss and achieve greater maturity. This is rewarding for the care giver as well those for whom they care.
Palliative care provision and its impact on psychological morbidity in cancer patients
Authors: Craven Olive
Published: May 2014

In response to many influences, palliative care services in the UK are evolving rapidly, and are increasingly challenged to demonstrate equity, access and effectiveness. This article discusses the principles, philosophy and status of palliative care in the UK in the context of recent NHS developments. A case study is employed in order to critically evaluate the implementation of the palliative care approach, focusing on the specific issue of the assessment of anxiety and depression in the cancer setting. The provision of a comprehensive and integrated clinical service is a constant challenge in this patient group. In order to increase awareness and facilitate further development of patient services, and ultimately improve clinical practice, several factors are highlighted. These include the impact of multiprofessional team care, the problems inherent in the diagnosis of depression and the question of whether cancer nurses are adequately prepared to handle patients’ psychological morbidity.
Creutzfeldt-Jakob disease: extending palliative care nursing knowledge
Authors: Bailey Beth , Aranda Sanchia , Quinn Karen , Kean Helen
Published: May 2014

In a 12-month period six people died from Creutzfeldt-Jakob disease (CJD) in a Melbourne hospice. CJD is a rare neurodegenerative disease, which commonly follows an explosive course unabated into the terminal phase. For the purposes of this article the care of six patients was audited using a retrospective chart review and a focus group was conducted with nurses involved in their care. The nurses faced considerable challenges as they endeavoured to provide comfort and support for these patients. The differences in the illness trajectory of CJD in relation to the more common experiences of illness progression in advanced cancer are discussed in the context of palliative care. This review focuses on the particular care issues of six people with CJD and their families at the end of life. The personal issues experienced by the nurses who provided palliative care are also explored. The need for the future development of guidelines for families and health professionals who care for people with CJD is highlighted.
Good life, good death: ethics and axiology
Authors: Woods Simon
Published: May 2014

The recent birth of my daughter has prompted me to reflect on the meaning of a good life. One question seems particularly pertinent; namely, what sort of life is the good life? An attempt to answer this would allow me to establish the conditions that might enable my daughter to enjoy such a life. But what if, on fulfilling her capacity for autonomy, she decides to reject my conception of the good life in favour of her own? Does this mean that there is no single conception of the good life, that there are as many versions of the good life as there are people?
The quality of terminal care in residential and nursing homes
Authors: Komaromy Carol , Sidell M , Katz JT
Published: May 2014

This article presents some of the findings from a large national multi-method study on the management of death and dying in residential and nursing homes for older people. The study included all types of registered homes and interviews were conducted with staff, residents and visitors to the homes. Stage 1 used a survey questionnaire to provide background demographic data. Stages 2 and 3 included 100 interviews with the heads of homes and 12 case studies. Particular consideration was given to internal and external influences on care provision in the interviews and observations were made in the case study homes. Clearly, home staff are committed to the provision of good quality terminal care for residents. This article focuses on some of the reasons why that commitment is difficult to translate into practice.
An overview of the management of recurrent breast cancer
Authors: Burnet Karen
Published: May 2014

Breast cancer recurrence is a potential problem for anyone who is diagnosed with breast cancer. Recurrent breast cancer can manifest both locally and systemically and can cause a variety of symptoms. After a diagnosis is established, treatment and symptom management may include radiation, chemotherapy, surgery and hormone therapy. The confirmation of a recurrent diagnosis may have far-reaching psychological and social implications for the patient. The care of each patient with metastatic disease must be tailored to that individual’s needs and will involve the varied skills of the multidisciplinary team. The type of care that is given should be negotiated with each patient, and includes a combination of active treatment and symptom management, with the ultimate aim of ensuring that the patient’s quality of life is maintained at an optimum level for as long as possible.
Discharge planning of terminally ill patients home from an acute hospital
Authors: Adam Joan
Published: May 2014

This exploratory descriptive study was designed to explore how well carers perceived they were being prepared by hospital staff to care for a terminally ill relative at home. In particular the study focused on the information and practical advice and support they received in hospital and how much this facilitated them in caring at home following the patient’s discharge from hospital. The study used a convenience sample of 12 patients and carers referred to a specialist palliative care service in an acute teaching hospital. The data were collected using semi-structured interviews. Qualitative analysis identified an overarching theme and related categories on coping with caring at home. The findings are supported by Folkman’s (1997) model of stress and coping and corroborated by other research on carers’ needs (Davies et al, 1994; Fakhoury et al, 1997). Interventions that may enable health professionals to facilitate carers to cope more effectively in caring at home and recommendations for further study are discussed.
Hypodermoclysis for control of dehydration in terminal-stage cancer
Authors: Cerchietti Leandro , Navigante Alfredo , Sauri Alvaro , Palazzo Felipe
Published: May 2014

Many of those involved in palliative care have justifiable objections to the introduction of intravenous hydration in patients with dehydration-associated symptoms and advanced cancer. Researchers from the University of Buenos Aires carried out a randomized, comparative and prospective trial to determine the usefulness of hypodermoclysis in the control of thirst, chronic nausea and delirium. Forty-two patients were randomized into two groups. Both groups received drugs subcutaneously (haloperidol 2.5mg every 4hours to control delirium and/or metoclopramide 10mg every 4hours to control chronic nausea). The study group also received 1000ml 5% dextrose in water infusion plus 140 milliequivalent per litre (mEq/L) sodium chloride, at a rate of 42ml/hour per day. Both groups showed significant and equal improvements in relief of thirst and chronic nausea at 24hours. After 48 hours, this improvement was maintained in the group that received hydration, but only for the relief of chronic nausea. Delirium did not improve significantly in either group during the 48-hour trial period. Current data suggest that decisions on rehydration of patients with terminal-phase cancer should be based more on the patient’s comfort than on providing optimal hydration.
Clergy and social workers’ attitudes towards death and palliative care in an acute care setting
Authors: Nardi Deena A , Ornelas Faith , Wright McKenley , Chrispell Rev Richard
Published: May 2014

This article examines a descriptive study of the attitudes of clergy and social workers toward death and palliative care. A purposive sample of all social workers and clergy affiliated with one acute care hospital system received 15-item written questionnaires. Exploratory factorial analysis uncovered four common ideas underlying views shared by the sample: honest communication, death as natural, active counselling, and right to information. Attitudes of clergy and social worker specialist providers toward palliative care for the terminally ill should be considered when designing comprehensive nursing care that includes counselling referrals and other supportive services for clients and family.
Celebrating 150 years of care at the Royal Marsden Hospital
Authors: Jackson Timothy
Published: May 2014

The Royal Marsden Hospital, which provides care and treatment to patients with cancer and their families, celebrates its 150th anniversary this year. The Royal Marsden Hospital first opened its doors to patients with cancer in 1851. It was founded by the surgeon Dr William Marsden, whose wife died from cervical cancer. Her last few months were described as ‘full of misery and pain’. It was perhaps her misery and death that inspired him to found the Free Hospital for cancer sufferers (now named The Royal Marsden Hospital in his honour). Since its foundation, it has developed into a nationally and internationally respected cancer hospital, and has expanded from its original Chelsea, London home to a second site in Sutton.
Presenting a case for involving children with a terminal illness in clinical trials
Authors: Devine Tom
Published: May 2014

Today’s approaches to the treatment of childhood malignancies are the result of past clinical trials. In order to improve survival it is essential we continue to seek benefit from clinical trials. However, entry of terminally ill children into a phase I or phase II clinical trial, involving a novel, potentially therapeutic, agent is highly contentious. This article will argue in favour of a child’s active and full participation in the decision to enter into a phase I or phase II clinical trial. A formal study of the role of children in clinical trials, especially phase I and phase II trials, is urgently required if standards of best practice are to be laid down and subsequently measured.
Malignant bowel obstruction: so much more than symptom control
Authors: Platt Violet
Published: May 2014

Malignant bowel obstruction is a life-threatening complication in patients with advanced cancer which has, until recently, required patients to be cared for in medical establishments. The majority of literature examining malignant bowel obstruction discusses medical and surgical care of patients. The nursing dimension of caring for such patients appears to have been rarely explored despite the impact that medical advances have had on nursing care in ensuring that people with a terminal illness are nursed appropriately. Advances in medical management and nursing initiatives now give this group of patients the choice of care setting. This article explores the complexity of malignant bowel obstruction alongside the its medical management, and highlights the challenge of nursing a patient experiencing malignant bowel obstruction as a terminal event.
Rural palliative care needs: a survey of primary care professionals in Powys, Wales
Authors: Noble Bill , Hughes Philippa , Ingleton Christine , Clark David
Published: May 2014

The county of Powys in rural Wales has a population of about 125000 people and no district general hospitals. In 1999, 12 Macmillan general practitioner clinical facilitators were appointed as part of a pilot project aiming to provide a coordinated framework for the commissioning of specialist cancer and palliative care services, extended clinical care to cancer and non-cancer patients, and an educational intervention to raise the standards of generalist palliative care. A survey of facilitators, general practitioners, district nurses and community hospital nurses was undertaken early in the project. Palliative care formed a small but significant part of respondents’ workload. Specialist palliative care services were seen as helpful but distant from the patients. Pain and symptom control were seen to be problematic in patients with diagnoses other than cancer. Services that provided 24-hour nursing care at home were thought to be in need of development by most respondents.
Effective symptom management: nausea and vomiting
Authors: Gamlin Richard
Published: May 2014

Continuing with the theme of managing distressing symptoms experienced by patients with advanced illness, this edition of WebWords reviews web content on the management of nausea and vomiting. These problems are frequently approached in a non-logical manner resulting in poor control. Assessment is frequently non-existent or incomplete and pharmacological management may be based on tradition rather than best evidence.
Hospice care and patients pain: communication between patients, relatives, nurses and doctors
Authors: Ashby Mary E , Dowding Chris
Published: May 2014

This article describes a study that sought to assess how patients, relatives, doctors and nurses in a palliative care unit viewed pain and pain management, and how standards and expectations for pain relief can be raised by upholding statements of care and agreed partnership values. The results showed that research-based pain management enables the provision of pain control that is acceptable to patients, relatives, doctors and nurses. By valuing patient-centred care, where assessment tools assist communication and information sharing, a partnership of care is established in which patient and professional autonomy are recognized and respected, international recommendations for pain relief are practised and professional codes of conduct upheld. Good pain management requires accurate assessment which is best achieved by open and honest discussion in a supportive environment. Hospices provide specialist symptom control aimed at improving quality of life for patients with advanced disease. They are not only an ideal setting to provide evidence for practice, but also a learning environment for specialist understanding of symptom control and a resource base for other professionals.
Effective partnerships in action: radical options or more of the same?
Authors: Mackie Phil , Morton Rosie
Published: May 2014

September 2000 saw the publication in the UK of the first National Health Service (NHS) plan for cancer services. The NHS Cancer Plan (Department of Health (DoH), 2000a) may be one of the most fundamental reforms of national cancer care services ever attempted – just as important is the fact that there is much in it for palliative care. It states:

‘All patients should have access to the specialist palliative care advice and services they need. For most patients, these will be provided in their homes, in the community or in hospital. Some will require the specialist facilities of a hospice. Voluntary palliative care services need to be enabled to play their full role in the cancer network, with adequate funding from the NHS’.

(DoH, 2000a)
Young adults with cancer: the effect of the illness on parents and families
Authors: Grinyer Anne , Thomas Carol
Published: May 2014

This article is based on the findings from a qualitative study involving a collection of narratives written by the parents of young adults with cancer. It examines the effects of the illness on parents and family and illustrates that young people aged 18–25years face particular difficulties when diagnosed with a life-threatening illness. The article focuses on how these difficulties are experienced by the parents of young adults who are attempting to maintain ‘normality’ and perhaps also manage newly established sexual relationships. The article considers the problems for parents, e.g. the ownership of medical information when the young adult is of age but dependent on his/her parents, the effect on siblings and the financial implications of the illness for the family. A gap in the knowledge of professionals and families relating to these effects may result in families believing that the acute problems they face are caused by their particular family dynamics rather than the life-stage of their young adult children.
More, or more effective, education?
Authors: Sneddon Margaret
Published: May 2014

Education is essential for enhanced and extended provision of palliative care. Despite the substantial growth in palliative care education in recent years, virtually every report or study into the provision of palliative care has highlighted the need for more education as a means to improve care. Greater awareness of the need for palliative care for a wider range of patients rather than only those with advanced cancer has increased the demand for education. However, will more educational opportunities necessarily result in the desired care improvements?
Breathe easily: help with dyspnoea management and palliative care
Authors: Gamlin Richard
Published: May 2014

Of the distressing symptoms experienced by patients with advanced illness, dyspnoea seems to have received much attention. Significant progress has been made with the effective combination of medication and a multiprofessional approach to care. Palliative care nurses have been at the forefront of many of these developments.
Repress or reveal: a patient’s choice
Authors: Mitchell Kay
Published: May 2014

From time to time, suffering for which there seems to be no answer challenges those who work with dying patients. Terminal suffering may have its foundations in unresolved issues from the past that manifest themselves in physical pain and psychological anguish. The patient may require assistance and support to disclose and resolve such issues. However, the converse is also true: patients may struggle to keep issues suppressed.
Is honesty the best policy?
Authors: Wilkinson Susie
Published: May 2014

Moving into the second year of the 21st century we cannot ignore that use of technology is rapidly progressing – nowhere more so than the worldwide web. Over the last year I have been astounded at how many patients and relatives have told me they have used the internet to search for information about their disease, treatments, prognosis and care options. Furthermore, it is not only the young who are engaged in these activities, but people of all ages. A survey of 2331 UK cancer patients’ information needs (Jenkins et al, 2001) confirms the emerging trend that patients want truthful information: 98% preferred to know if they had cancer, 87% wanted all information – good and bad – about their illness treatment and prognosis, and only 1.9% did not want to know if they had cancer.
Collaboration: a critical challenge
Authors: Defilippi Kath
Published: May 2014

For this editorial, collaboration will be simply defined as working together to provide the best possible quality of care to patients, families and communities. Integral to palliative care, this occurs daily between interdisciplinary team members. Working in a team has, in fact, been described as the essence of collaborative practice (Lockhart-Wood, 2001). My focus, however, is on external collaboration between organizations; this includes (but is more than) networking. A close association and reciprocal referral system occurs between networking partners. However, although collaboration implies sharing resources and responsibility for outcomes, competition – which may be healthy between networking partners – is its antithesis. In both instances, success is dependant on good communication between colleagues at the grass roots and senior management levels.
Diagnosing and dealing with depression
Authors: Gamlin Richard
Published: May 2014

Depression is a difficult symptom to diagnose and treat in patients with advanced illness, with much debate about the difference between depression and appropriate sadness. The Hospital Anxiety and Depression Scale (HADS) is a common tool, but there is divided opinion about its value in palliative care.
Hospice at home 1: the development of a crisis intervention service
Authors: Travers Elizabeth , Grady Anna
Published: May 2014

This article is the first in a series of two which report on the development and evaluation of a rapid response crisis intervention service for patients in the advanced stages of cancer. A number of recent studies have identified the need for rapid response teams who are able to provide palliative and specialist palliative care in the home setting (King et al, 2000; Mantz, 2000; Thomas, 2001). By providing an overview of the relevant literature and describing the experience of developing this scheme the authors’ aim is to share good practice with interested professionals who may be contemplating setting up similar schemes. This article outlines the development of a ‘hospice at home’ scheme until its launch and identifies the strategies used to ensure the early success of the project.
Quality of life
Authors: Gamlin Richard
Published: May 2014

This is a topic that comes up very often in palliative care and in many ways is seen to be synonymous with it. Opinions are divided about what the term means, how it is defined, how it can be measured and how it can be enhanced. The World Wide Web offers much for those who wish to understand this concept, although numerous sites merely mention the concept without any depth.
Human research ethics committees: issues in palliative care research
Authors: Lee Susan , Kristjanson Linda
Published: May 2014

Palliative care research is fraught with many difficulties. There are challenges associated with conducting research with vulnerable patients and families, difficulties with obtaining informed consent, and methodological complexities. Thoughtful construction of research protocols may overcome many of these problems. However, researchers may be powerless to overcome the discomfort of members of human research ethics committees (HRECs) who disallow access to palliative care patients and families. The notion of conducting research with this group is often perceived as abhorrent by those who do not practice in palliative care. This is because of a persistent idea that dying people and their families are so burdened by the dying process and so vulnerable to exploitation that they should not be approached to be involved in research. This over-protectiveness regarding palliative care research often distorts the proper gate-keeping role of HRECs and health-care professionals. This article draws on the authors’ experiences of presenting applications to HRECs over the last 20 years. It explores the responsibilities of HRECs, the responsibilities of palliative care researchers and the rights of patients and families. HRECs and health professionals who endeavour to undertake palliative care research are encouraged to reflect and re-examine the role of ethics committees.
Is it ever too late for holistic cancer care?
Authors: Daniel Rosy
Published: May 2014

When I was working as Medical Director of the Bristol Cancer Help Centre (until 1999), I commissioned research that was performed jointly by Bristol with Dr Jonathan Tritter of the University of Warwick and Dr Victor Barley of the Bristol Oncology Centre. Our goal was, in focus groups, to elicit from people with cancer what their emotional and self-help needs had been and how these needs had been met (Daniel et al, 1999).
Economic evaluation of specialist cancer and palliative nursing: Macmillan Evalution Study findings
Authors: Douglas Hannah-Rose , Halliday Debbie , Normand Charles , Corner Jessica , Bath Peter , Beech Nicola , Clark David , Hughes Philippa , Marples Rachael , Seymour Jane , Skilbeck Julie , Webb Tom
Published: May 2014

Economic evaluation of specialist nursing interventions is challenging because of the complex nature of interventions and the difficulty of describing nursing outcomes in simple ways. This article discusses data from a study of Macmillan specialist cancer nursing. Resource-use data and nursing-outcome data were collated from 76 case studies of patients referred to 12 specialist cancer and palliative nursing teams (home-based and hospital-based) in the UK. Specific outcomes related to nursing were defined, and cost and nursing outcome data were analysed together. The data suggested that patients who reported better nursing outcomes had a higher proportion of specialist nursing interventions than those reporting poor nursing outcomes (45% versus 25%). Also, the overall pattern of health-care use was different for those patients who reported positive nursing outcomes. This suggests that positive nursing outcomes can influence patients’ access to other health services. The data supported specific hypotheses regarding ways that specialist nurses can influence the cost-effectiveness of care. These data do not constitute a comparative evaluation study, as no control group was identified. Such results are nevertheless important as this type of data has not been gathered previously.
Is there a need for an interactive teaching tool on pain management in cancer?
Authors: Sugden Susan , Dunbar Catherine , Allen Kathryn
Published: May 2014

The management of pain remains one of the most problematic areas in the care of the cancer patient, with evidence suggesting that one half of terminally ill patients needlessly experience pain (Hanks, 1995). Although significant advances in pain management have been made, there are several factors that prevent the provision of the best palliative care. These include misconceptions and myths about opiates and the reluctance of patients to comply with treatment and report their pain (Redmond, 1998; Drayer et al, 1999).
A culture change to improve care?
Authors: Cooley Candy
Published: May 2014

My Grandmother was 98 this year. She tells me tales of growing up in Liverpool and going to view poor ‘Mr Smith’ or ‘Mrs Jones’ laid out in the front room. In contrast, my own children have never seen a dead body. It seems that in the UK, and many other countries, the great successes of medical science have made us uncomfortable with death and dying. Whether the cause of death is natural old age or disease, many would prefer to confront it only when they have to.
Complementary and supportive therapies: sites providing information and discussion
Authors: Smyth Dion
Published: May 2014

The increased public interest in, and uptake of, complementary therapies has been reflected in gradual changes in orthodox professional’s attitudes towards an integrated health-care approach. Many oncology units, hospices and specialist palliative care units offer complementary therapies to their patients, and there is evidence that these treatments are popular with patients. This month’s Web Words completes my brief look at a selection of supportive therapies, and also provides examples of some sites that challenge the practice and perception of some treatments available.
Audit of referrals to a hospital palliative care team: role of the bilingual health-care worker
Authors: Ackroyd Rajeena
Published: May 2014

There is much interest in whether the needs of ethnic minority patients are being met by palliative care services. Bradford has a population that includes people from several different ethnic minorities, the largest number of whom originate from Pakistan. In May 2000 a bilingual health-care worker (BHCW) was appointed to work with the local palliative care teams to improve service provision for patients from South Asia. An audit of referrals to Bradford teaching hospitals palliative care team from October 2001 to September 2002 looked at the role of the BHCW. It was found that the BHCW was involved in 41% of referrals from ethnic minorities. In addition to aiding communication, the BHCW also provided an important link between the community and the hospital for patients and had a role in bereavement and family support. This audit indicates the BHCW role can be successful and may be useful for other population groups.
Pilot of a workbook for children visiting a loved one in a hospice
Authors: Macpherson Catriona , Cooke Cathy
Published: May 2014

A palliative care counsellor developed a workbook for use by children aged 5 to 14 years visiting a loved one in a hospice. This article reports the findings of a small qualitative pilot study exploring how children used the workbook, their views on it and the views of their families and hospice staff. The seven children in the study all enjoyed having the workbook. It provided opportunities for them to interact and build relationships with the staff and to become more involved in their visits to the hospice. Nurses and staff thought the workbook had the potential to help nurses and parents respond to questions or to stimulate discussion. Children used the workbook in different ways, highlighting the need for a flexible approach. It is essential when using such a tool that individual and family needs are respected. The study also raised issues regarding the need for training and emotional support for staff.
Is pain what the patient says it is? Interpreting an account of pain
Authors: Arber Anne
Published: May 2014

This article discusses the integrated approaches to pain that have developed within the pain medicine movement, and the hospice and palliative care movement. Such approaches blend biomedical, social, emotional and spiritual aspects of the pain experience. However, patients and health-care staff may hold different beliefs about pain, such as patients having a medical understanding about pain while health-care practitioners may use concepts such as ‘total pain’ or ‘psychological pain’. Some of the problems related to interpreting an account of pain are discussed and suggestions are made for developing pain assessment, education and research.
Palliative care needs assessment
Authors: Mirando Sally
Published: May 2014

Unprecedented changes are taking place in the UK National Health Service (NHS) and never before has so much attention been given to palliative care. In a short report for a British Medical Association (BMA) News Bulletin (Reid, 2004) John Reid, the Secretary of State for Health, declared that patient services are being transformed as the vision for the NHS is renewed (Department of Health (DoH), 2004a). He mentioned patients’ ‘needs’ five times in this short report. The overriding stance was of choice, meeting need and empowered patients.
The experience of family members caring for a dying loved one
Authors: Perreault Annie , Fothergill-Bourbonnais Frances , Fiset Valerie
Published: May 2014

Qualitative nursing research into the experience of family members caring for a dying loved one has been limited. This study used a phenomenological approach to explore this experience. The pattern of caring for a dying loved one and its intertwined dimensions were described. Caregivers felt a sense of helplessness that was associated with illness progression, their inability to relieve pain and discomfort, and decision-making related to patient admission to a palliative care unit. Lack of support from health professionals and having to face personal limits were found to accelerate the decision to admit a patient. The role of a support person involved with the caregiver was also considered and found to be an area worthy of further investigation. Health professionals must provide information and support tailored to the caregivers’ needs as they change along a patient’s illness trajectory.
A difficult relationship between oncology ward staff and a patient’s husband: a case study
Authors: Abma Tineke A
Published: May 2014

A distinguishing characteristic of palliative nursing is the care of a patient’s family members and close friends (Doyle et al, 1993). Family members often find providing care to be stressful and burdening (Higginson et al, 1990; Sykes et al, 1992; McMillan, 1996; Leis et al, 1997; Rose, 1997). Leis et al (1997) noted that research on the impact of a terminal cancer on family members was limited. They identified a number of sources of stress related to caregiving and reported several family member needs. The most important need was to make sure that the patient was comfortable. Other needs range from information and training in specialized skills to emotional support and respite (Grbich et al, 2001; Proot et al, 2003).
Dying in prison: providing palliative care in challenging environments
Authors: Bolger Maggie
Published: May 2014

Prison health care in the UK is currently experiencing a period of change and, therefore, there are opportunities for the development of palliative care services. Some of the challenges of providing this element of care to dying prisoners are highlighted in this article.
Incorporating palliative care into heart failure management: a new model of care
Authors: Segal Diane I , O’Hanlon Debbie , Rahman Naila , McCarthy Debbie J , Gibbs J Simon R
Published: May 2014

In this the 10th anniversary issue of IJPN, as the focus of palliative care moves to the wider community, the heart failure service team at Charing Cross Hospital discuss bringing palliative care to heart failure patients. They briefly outline their experiences and make some suggestions for the development of care for these patients.
Technology, futility and palliative care
Authors: Kelly Daniel
Published: May 2014

I witnessed recently the death of a relative on an acute surgical unit. Diagnosed with bladder cancer 2 years previously, her condition had deteriorated slowly during a trip overseas until she returned home and was admitted immediately to hospital for intravenous rehydration, antibiotics and cardiac monitoring. After 2 days her physical condition was considered to have ‘improved’; however, she was also experiencing pelvic pain that responded to a diamorphine infusion. Attempts were made to arrange transfer to a hospice, but this was not possible and she died soon after with her family at hand. Reflecting on these events prompted questions about the relationship between medical technology and the goals of palliative care to ‘avoid overly interventionist treatments and of offering a range of “low-tech” options to people dying with advanced disease’ (Seymour, 2000).
Yoga for patients and carers in a palliative day care setting
Authors: McDonald Aileen , Burjan Elene , Martin Sue
Published: May 2014

This study suggests that yoga can be of benefit to patients (and carers) in palliative care settings. Complementary therapies have been employed in our day care unit for several years – aromatherapy, reflexology and massage – and have grown in popularity, enabling relaxation and a feeling of wellbeing. For patients striving to remain physically fit and, in consultation with our physiotherapist, we felt there may be a role for a gentle form of yoga. A study of the literature yielded information on yoga and cancer but little evidence of its use in palliative care. Having identified a form of yoga that could be adapted for those with physical frailties – Dru yoga – a 12-week pilot project was introduced into the day care unit. This proved to be highly successful and has now been incorporated as part of our therapeutic service.
Exploring cancer genetics and care of the family: an evolving challenge for palliative care
Authors: Lillie Alison Kate
Published: May 2014

There is a growing scientific understanding and increasing public awareness of the influence of genetics on the development of cancer. This article, which is based on a review of the literature, focuses on how the awareness of genetic predisposition to cancer is affecting patients and their families. It highlights the way that risk assessment for predisposition to cancer can conflict with traditional models of informed consent and can cause concern for families. It suggests that there is need for informed discussion within palliative care about how best to support families with concerns about a family history of cancer.