bluuebunny/crossref_metadata_2025 huggingface dataset:
Development of a holistic admission assessment: an integrated care pathway for the hospice setting
Authors: Roberts Dai , Taylor Sue , Bodell William , Gostick Gill , Silkstone John , Smith Lynn , Phippen Alison , Lyons Bridget , Penny Denise , Norris Ann , McDonald Heather
Published: May 2014

This article describes the development of a holistic admission assessment for all inpatients admitted to a 66-bedded hospice, structured in the form of an integrated care pathway (ICP). The need for an improved assessment process was identified by clinical staff, who recognized that the existing assessment was not truly holistic and was dependent on the skills of the assessors. The assessment also lacked appropriate goals and actions. The recently published National Institute for Clinical Excellence (NICE) guidance on Improving Supportive and Palliative Care for Adults with Cancer, has also highlighted key areas for the improvement of patient assessment in specialist palliative care (NICE, 2004). Implementation of the ICP has resulted in a systematic and timely holistic assessment process for patients. The ICP addresses effectively the NICE recommendations for the assessment of specialist palliative care patients.
End-of-life care: an educational intervention for rural nurses in southeastern USA
Authors: Easom Leisa R , Galatas Steven , Warda Maria
Published: May 2014

Aim: To assess the impact of three educational presentations as an intervention for increasing knowledge of end-of-life care for rural nurses in assisted living and nursing home environments.

Design: A repeated measures design (quantitative component) evaluated the effects of the educational intervention. Two open ended questions yielded qualitative data.

Sample and Setting: A convenience sample (n = 9) of Registered Nurses and Licensed Practical Nurses employed in an assisted living facility or nursing home in the rural, southeastern region of the USA. Level of nursing experience ranged from 6 to 28 years.

Analysis: Frequency distributions, difference of means test for paired samples.

Results: Post test scores were significantly higher (t = 6.999; p < 0.001) than pretest scores regarding overall knowledge on end-of-life care. Attitudes and perceptions of participants changed in defining what constitutes a ‘good death’.

Conclusions: Classroom educational presentations are an effective means of changing attitudes and improving end-of-life care knowledge. Additional education and support for rural nursing personnel involved with residents of long term care may enhance end-of-life care.
The challenge of providing palliative care in the nursing home: part 1 external factors
Authors: Wowchuk Suzanne M , McClement Susan , Bond Jr John
Published: May 2014

One impact of the baby boom generation and improved medical care is that nursing homes will be the place of care and site of death for growing numbers of frail, older persons dying of chronic progressive illnesses. The nursing home settings may appear to be an appropriate environment wherein residents could receive palliative care, but the literature suggests that provision of such care is replete with challenge. Some of these challenges are external to the nursing home environment and are beyond the setting’s control, others have internal origins and to some extent may be under the home’s control. In part I of this two-part article, we review and critically analyse the primary external factors identified in the literature — characteristics of the residents — as they impact on the ability of care homes to deliver palliative care.
The final period of life in elderly people in Sweden: Factors associated with QOL
Authors: Andersson Magdalena , Halberg Ingalill R , Edberg Karin
Published: May 2014

Whether elderly people in the final period of life have a high quality of life (QOL) and what factors relate QOL in this context, is not well known. The aim of this study was to examine the final period in life in elderly people (75 years or older) in need of help with instrumental activities of daily living (ADL), with the focus on quality of life, sense of coherence (SOC), health complaints and self-reported diseases. Also to investigate factors associated with QOL and factors predicting mortality. The sample consisted of 411 people, fifty of the respondents (the study group) had died within 1 year of data collection. The results showed that the study group had lower QOL than the comparison group. More admissions to hospital as well as the number of health complaints present negatively affected QOL for all respondents. Factors that predicted mortality included older age and higher number of health complaints.
Canada’s Compassionate Care Benefit: Views of family caregivers in chronic illness
Authors: Williams Allison , Crooks Valorie A , Stajduhar Kelli I , Allan Diane , Cohen S Robin
Published: May 2014

Aim: Based on a pilot evaluation of Canada’s recently introduced Compassionate Care Benefit (CCB), the purpose of this paper is to highlight the experiences of family caregivers caring for people with non-malignant advanced chronic illness.

Design: Using Patton’s (1997) utilization-focused evaluation approach, 25 telephone interviews were conducted with three groups of family caregivers:

Those who had successfully applied for the CCB; Those who were unsuccessful in their applications Those who had never applied for the benefit.

Findings: The CCB has a number of limitations, particularly for caregivers of patients diagnosed with non-malignant advanced chronic illness. The central limitations are:

Difficulties associated with accurate prognostication Limited definition of ‘family member’ Unsufficient length of the funding period.

Conclusion: By modelling similar programmes internationally, such as those in Sweden, Norway, and the Netherlands, Canada would likely find the CCB to have greater relevance and accessibility to Canadian caregivers, particularly those caring for people with non-malignant advanced chronic illness.
Constipation and palliative care – where are we now?
Authors: Kyle Gaye
Published: May 2014

Constipation is an unpleasant and distressing symptom that many palliative care patients may experience, often having a profound effect on their quality of life. The many management options available reflect the multifactorial nature of constipation. The article explores the complexity of constipation in palliative care and highlights the challenge of managing opioid induced constipation. Advances in the pharmacological and non-pharmacological management of constipation are reviewed and discussed in the light of relevant research. Further discussion includes definitions, incidence and causes of constipation in palliative care.
Children’s needs when facing the death of a parent from cancer: part one
Authors: MacPherson Catriona , Emeleus Martha
Published: May 2014

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

This paper selectively reviews the literature related to children’s and families’ needs when facing and dealing with the death of a parent, bringing into focus some of the work available to inform thinking and planning in this area. It then describes the methods used to conduct this exploratory study and reports the issues which will be considered as a basis for future service development.
Use of a modified ESAS in cancer patients: a pilot study of patient and staff experiences
Authors: Baba Kerstin , Fransson Per , Lindh Jack
Published: May 2014

Aim: To evaluate the feasibility of a modified Edmonton Symptom Assessment Scale (ESAS) for monitoring symptoms in oncological palliative care.

Methods: A modified ESAS was delivered daily to 28 patients with advanced cancer. A questionnaire to discover staff members’ opinions on the ESAS was delivered at the end of the study. Structured interviews were used to examine patients’ opinions on the ESAS.

Results: The mean total ESAS score was 28.9 on inclusion day and 25.8 on Day 3 (p=0.531). Eleven of 21 of the staff considered the ESAS to be a ‘good’ or ‘very good’ way to obtain information about patients’ symptoms. Seventeen of 24 patients who participated in the interview felt that ESAS was easy to fill in, and that there were no missing questions.

Conclusion: The patients felt that the modified ESAS contained relevant symptoms, and that the questionnaires were easy to fill in. The staff considered the modified ESAS to be a useful instrument for obtaining information about patients’ symptom distress. The modified ESAS is a good instrument for use as part of the daily clinical routine, as well as for monitoring symptoms in palliative oncological care.
The evaluation of an end of life integrated care pathway
Authors: Lhussier Monique , Carr Susan M , Wilcockson Jane
Published: May 2014

Aim: This evaluation set out to examine the needs of staff as they adopted an end-of-life Integrated Care Pathway (ICP), and its impact on both service users and providers.

Method: Semi-structured interviews were conducted with palliative care specialists, other health care professionals and bereaved carers.

Results: The challenges encountered revolved around the multitude of settings, and professionals involved; around the diagnosing of dying; communication with patients and the provision of emotional or spiritual support. Ongoing challenges at the end of the evaluation were those of addressing spirituality and some of the established practices. However, there was general consensus that the ICP facilitated greater consistency of care, improved continuity, and ensured a proactive rather than a reactive approach to care. All these were recognised and appreciated by bereaved carers.

Conclusion: End of life is now every health care professional’s business and this may have the potential to raise the place of palliative care in general on the professional agenda.
Knowledge, attitudes and practices of nursing personnel regarding advance directives
Authors: Duke Gloria , Thompson Sue
Published: May 2014

The aim of the study was to describe the knowledge, attitudes and practices of nursing personnel working in acute care settings regarding advance directives (ADs). The study was descriptive using a 40-item, newly developed tool (Update on Advance Directives questionnaire) distributed to 108 nursing personnel (mostly registered nurses) who were willing to complete the questionnaire. The findings were that nursing personnel reflected a lack of knowledge concerning federal and state laws and general information about ADs. Nursing personnel had very low rates of AD completion but most felt ADs were valuable for the patient. We concluded that nurses need more resources, e.g knowledge, administrative and physician support, and communication tools to facilitate advance planning for end-of-life care for patients. The role of the health care provider, be it the nurse, physician or other, needs to be clarified regarding the most practical setting for AD formulation.
Palliative care provision in Huntingtons disease
Authors: Travers Elizabeth , Jones Kate , Nicol Jacqueline
Published: May 2014

There is currently much interest regarding the needs of people affected by non-malignant disease and whether or not these are being met by palliative care services. The evidence available appears to support the conclusion that while there is a general inequality of access, some individuals with non-malignant conditions such as cardiac disease and motor neurone disease are able to access palliative care services more readily than others.

Huntington’s disease (HD) is a devastating neurological condition of long duration and as such may have a lengthy palliative phase. Consequently, a diagnosis of HD will have a major impact on the quality of life of the affected individual and their family. For carers, an understanding of this challenging disease and its prognosis is essential for the provision of appropriate and effective care.

This article reviews the links between HD and palliative care and discusses some of the challenges facing patients, families and health care professionals in adopting a palliative approach in the management of the disease.
Process mapping: enhancing the implementation of the Liverpool Care Pathway
Authors: Taylor Amanda J , Randall Clare
Published: May 2014

Arohanui Hospice is a 12-bed specialist palliative care service based in Palmerston North, New Zealand. It serves a population of 180 000 people spread over a wide geographical area, both urban and rural. The Liverpool Care Pathway (LCP) was initially implemented at the hospice inpatient unit in January 2005. Following this, the ‘LCP Pilot Project’ was developed. This project involved the implementation of the LCP within three aged residential care facilities and two wards within the regional hospital. Included in the project was a research component to enable evaluation of the effectiveness of the LCP in each setting.

This article will consider and demonstrate the use of process mapping (Buckman, 2003) as a quality improvement tool to enhance the effective implementation and sustained use of the LCP for the dying patient within aged residential care. Measures are considered that support the implementation of the LCP at an organisational level rather than at a purely clinical level. While this work has been completed within the New Zealand context, it is believed that the principles are transferable to similar settings internationally.
A qualitative study assessing mental health issues in two hospices in the UK
Authors: Hackett Addy , Gaitan Alfredo
Published: May 2014

This study is a qualitative investigation into the experiences of assessing mental health issues by members of staff from two hospices in the UK. Nine individual interviews were held with doctors and nurses from the two hospices using semistructured interviews. The research method used was grounded theory and the emerging data were analysed using the computer software Atlas.ti. The analysis was conducted around the four main research questions: ‘How is mental health assessed in the hospices?’, ‘What are the staff members’ feelings about doing these assessments?’, ‘How does assessment information inform clinical practice?’ and ‘What are the perceived training needs of staff?’ The findings show that mental health is, to some extent, being assessed within these two hospices; however, no formal assessment strategy is in place. The majority of staff interviewed had very limited experience and/or training in the field of mental health and expressed a lack of confidence when dealing with mental health-related issues. A list of training needs has been identified. On the basis of these findings, recommendations have been made to improve the assessment procedures currently used within these two hospices.
Malignant fungating wounds: an analysis of the lived experience
Authors: Piggin Catherine , Jones Vanessa
Published: May 2014

Aim: This paper reports upon a study that aimed to illuminate the meaning and experience of living with a malignant fungating wound.

Background: The current understanding of living with a malignant fungating wound is derived from professionals’ rather than the patient’s perspective. An appreciation of the lived experience may assist in the development of more empathetic support approaches.

Method: A Heideggerian hermeneutic phenomenological approach was used as the philosophical framework. Unstructured interviews were conducted with a purposive sample of five participants. Content hermeneutic analysis was adopted to analyse the data.

Findings: Four themes were identified: representing the worst part of the patient’s cancer; living within a body that cannot be trusted; a changing relationship with the patient’s family and friends; and a loss of identity while continuously striving to be normal, yet feeling different.

Conclusion: Health care professionals must possess a heightened awareness of: the importance of the impact of the wound upon day-to-day living, identity and purpose; the value of adopting the phrase used by the patient to describe their wound; and to focus more upon the subjective meaning of a visibly changing wound rather than objective measurement.
Development of a pathway to facilitate gastrostomy insertion for patients with MND
Authors: Oliver David , Bell Jenny , Gallagher Donal , Newton Jenny , Rackham Claire , Swannick Jackie , Thompson Sheila
Published: May 2014

A pathway has been developed using a multidisciplinary group from within specialist palliative care to ensure a comprehensive approach to the insertion of gastromy tubes for patients with motor neurone disease (MND) with swallowing difficulties. The pathway has ensured that there is a coordinated approach and the professionals involved are clear as to their responsibilities in the discussion and planning of the insertion, ensuring the best support for the patient and family.
Macmillan nurse facilitators: establishing a palliative resource nurse network in primary care
Authors: Byron Shirley , Moriarty Deirdre , O’Hara Annette
Published: May 2014

Aim: To describe how a link nurse system for palliative care was established in primary care and report on an evaluation of the system undertaken as part of a larger evaluation of newly established Macmillan nurse facilitator posts.

Method: A range of data collection techniques were used to collect information relating to the link nurse system including interview, questionnaire and observation. Various sampling strategies were adopted for the different data collection methods. This paper reports on the findings of semi structured interviews with groups of district nurses and link nurses, a questionnaire to district nurses, telephone interviews with a sample of questionnaire respondents and site observations.

Findings: The Macmillan nurse facilitators have established, supported and maintained a robust palliative resource nurse (PRN) group within primary care. The majority of practising clinical district nursing staff have used this important resource for a variety of reasons over the past four years. The model developed provides an opportunity for professional development for the PRNs. This initiative has been viewed as a very positive development and has been utilised for disseminating information, research and audit purposes from clinicians both within and out-with primary care.

Conclusions: The establishment of a palliative resource network within primary care has been successful. It has provided an effective and efficient means of disseminating information across a large workforce and extensive geographical area. The development of a clear structured model benefits both the PRNs and the organisation by providing clear expectations of the role while offering a framework for professional development.
Artificial rehydration in the last days of life: is it beneficial?
Authors: Bavin Lyn
Published: May 2014

Dehydration is a common concern in palliative care, and can be an emotive issue for patients and their families (Patchett, 1998). Family members instinctively wish to continue caring for a dying relative, and no more so than by giving nourishment. When the time comes that food cannot be tolerated, giving fluid can seem to be the last way of providing the patient with comfort and nurture. Dehydration may be perceived as the reason for death, rather than a natural part of the dying process. Is it therefore reasonable to give patients fluid by an alternative method? Hypodermoclysis (HDC), or subcutaneous hydration, is sometimes used to administer fluids in the last days of life in a palliative care setting. This article aims to consider the benefits and problems associated with artificial rehydration in these circumstances.
Diagnosis and management of malignant spinal cord compression: part 1
Authors: Drudge-Coates Lawrence , Rajbabu Krishnamoorthy
Published: May 2014

Malignant spinal cord compression (MSCC) is a particularly challenging area of cancer care where early diagnosis and expert multidisciplinary care and rehabilitation are paramount in optimising quality of life for the affected individual. The effects of MSCC can range from minor sensory, motor and autonomic changes to severe pain and complete paralysis that significantly affects the remainder of a patient’s quality of life. When caught early, the symptoms of MSCC can be prevented, minimised or possibly reversed. However, failure to recognise the condition and its serious nature, together with limited awareness of the importance of early referral for treatment, can result in irreversible paralysis. Therefore, it is essential that nurses providing clinical care for these at-risk patients are able to identify early symptoms, and undertake a thorough patient history and examination, educating the patient and their family about the signs and symptoms, which should be reported as soon as they occur.
Nurses’ management of patients with advanced cancer and weight loss: part 2
Authors: Dewey Ann , Dean Taraneh
Published: May 2014

Weight loss and eating-related disorders are commonly seen in patients with advanced cancer. Using a qualitative approach this study set out to explore how nurses currently manage weight loss and eating difficulties in everyday practice as well as exploring what guides their decision-making with regard to choice of nutritional interventions and support strategies employed. Fourteen semi-structured interviews were conducted with nurses from both hospital and community settings. Analysis of the findings revealed that many nurses use an unplanned and reactive style of nutritional management. The findings provide useful insights and potential explanations to an area where, to date, there has been little published research.
When advanced cancer patients won’t eat: family responses
Authors: McClement Susan E , Harlos Mike
Published: May 2014

We conducted a grounded theory study examining nutritional care experiences in advanced cancer from the perspective of patients (n=13), families (n=23), and health care providers (n=11) (McClement, 2001). That work generated an inductively derived model that captured important information about adult family members’ perceptions and behaviour regarding the nutritional care their terminally ill adult relative received while hospitalized on an inpatient palliative care unit, and has been reported elsewhere (McClement et al, 2003). This article provides a more detailed description of one of the major sub-processes of the model regarding family member responses to declining oral intake and weight loss in a terminally ill relative–the sub-process of ‘letting nature take its course: it’s best not to eat.’ The strategies family members use when letting nature take its course, and the consequences of these strategies for patients, family members and health care providers are reported. Implications for practice and research are provided.
Pain in elderly hospitalized cancer patients with bone metastases in Norway
Authors: Hølen Jacob , Torvik Karin , Kaasa Stein , Kirkevold Øyvind , Holtan Anders , Kongsgaard Ulf , Rustøen Tone
Published: May 2014

Aim: To examine differences in reported pain, pain management and satisfaction with pain management between middle-aged and elderly patients. The study also examined differences in global quality of life (QoL) and pain interference with patient function between middle-aged and elderly patients with bone metastases.

Method: A one-day prevalence study was performed, targeting hospitalized cancer patients 18 years and over in Norwegian hospitals; 79 patients with bone metastases were included.

Results: In total, 89% of patients reported daily pain, and there was no significant difference between the two age groups (p=0.52). Elderly patients reported significantly higher scores for ‘worst pain’ (p=0.036) and ‘pain severity intensity’ (p=0.027), but received strong opioids for their cancer pain significantly less often than middle-aged patients (p=0.024). We found a significant linear association between increasing age and decreasing scores on Cleeland’s pain management index (p=0.002). There were no statistically significant differences between age groups in satisfaction with pain management, pain interference with functioning or global QoL.

Conclusion: These results indicate that more focus is needed on pain management in elderly cancer patients with bone metastases.
Transferring palliative care knowledge, evaluating the use of a telephone advice line
Authors: M Carr Susan , Lhussier Monique , Wilcockson Jane
Published: May 2014

Accessing specialist palliative expertise, particularly out of hours, is an important, but often problematic aspect of meeting directives to provide comprehensive around-the-clock care. A telephone advice line can be a successful route to transferring palliative care knowledge between specialists and generalists. In contrast to telephone expert systems, which demand standardization, this type of expert system emphasises the use of professional judgement. Based on a three-year evaluation, this article highlights that assessing and advising professionals about the use of a telephone as a communication mechanism demands specific communication skills and processes which need to be developed and nurtured. Another important feature to acknowledge is that the predominate aim of a telephone advice line may most appropriately be to transfer knowledge on a case-by-case basis to contribute to the resolution of a clinical need.
Open all hours: a qualitative exploration of open visiting in a hospice
Authors: Cooper Lesley , Gray Helen , Adam Joan , Brown Duncan , McLaughlin Patricia , Watson Julie
Published: May 2014

Over the past 20 years, visiting policies within adult care settings have progressed from strictly enforced times to more flexible arrangements. The Scottish Commission for the Regulation of Care (SCRC, 2003) advocates open visiting in hospices, which allows access at all times of day. However, little research has been carried out to investigate the assumption that an ‘open visiting’ policy in a hospice benefits patients and carers and improves the quality of care. This article describes the first strand of a qualitative exploratory study designed to evaluate the impact that open visiting has on patients and the multidisciplinary team in a hospice. A purposive sample of ten inpatients was interviewed. Data were analysed thematically. Patients acknowledged the benefits of contact with family and friends, such as maintaining links with the outside world and improvement in mood. However, they also reported that visitors could be intrusive and, depending on the nature of the relationship, were not always sensitive to cues that the patient was tiring or in pain. Patients indicated a need for more control of visiting arrangements, particularly related to timing, visitor numbers and restrictions on who could visit. These data will contribute to the second strand of the study which involves interviewing multidisciplinary team members.
Palliative care nurse consultants in Melbourne: a snapshot of their clinical role
Authors: O’Connor Margaret , Peters Louise , Walsh Kaye
Published: May 2014

Aim: The current role of the palliative care nurse consultant (PCNC) is as diverse as the organisations in which such nurses work. This study reports on Phase 2 of a larger study in Melbourne, Australia, which focused particularly on describing some of the clinical aspects of the work of the PCNC in the acute hospital setting.

Design: A cross-sectional survey was used to describe the selected clinical activities of the PCNC. A data collection sheet was developed to gather information about their work.

Sample and setting: 21 PCNCs participated in the study and data were collected for 282 patients within 12 acute hospitals in Melbourne.

Methods: PCNCs recorded selected information about their clinical work for a two-week period. Descriptive analyses were carried out to calculate frequency distributions and mean scores.

Findings: In 73% of referrals, the PCNC was the first contact the patient had with any palliative care health professional; patients with a malignant diagnosis constituted the main workload of the PCNC; the highest number of interventions was recorded for the symptom management/psychosocial care category; and the time from acute hospital admission to PCNC consult referral was 6.57 days.

Conclusions: This study has demonstrated that the work of PCNCs is complex and diverse. This research forms the basis for further study into the role of the PCNC.
The conception of the Nankya model of palliative care development in Africa
Authors: Downing Julia
Published: May 2014

There is a great need for palliative care in Uganda. The framework for the development of such services has been the World Health Organization’s (WHO) public health strategy for palliative care, including policy, drug availability, education and implementation. In this model and in much of the literature it is accepted that education has a part to play in the development of palliative care; yet, there is a lack of evaluative literature or an understanding as to the steps required alongside education to develop palliative care services.

An evaluation was undertaken of an HIV/AIDS palliative care education strategy in rural Uganda. It aimed to determine the effectiveness of the education strategy and to explore what had taken place in order for any change in practice to be seen. The impact of the programme was seen in different areas and a grounded theory approach was used to look at the emerging themes from the evaluation. Throughout the process it was possible to identify key milestones and changes that had to occur within the district where the training was taking place, in order to help develop palliative care services. To achieve these milestones and make the changes it was necessary not only to provide palliative care training, but also to advocate for palliative care at the district and national levels and work with other stakeholders in the area. Out of this, a model for the development of palliative care in the rural African context has emerged called the ‘Nankya model of palliative care development’. Further work needs to be done on validating the model although it appears that the Nankya model is congruent with the WHO’s public health approach to palliative care and it is anticipated that it will help stakeholders to understand the process of developing palliative care in the rural setting.
Evaluation of the introduction of an advanced care plan into multiple palliative care settings
Authors: Newton Jenni , Clark Ruth , Ahlquist Pat
Published: May 2014

Advanced care plans provide an opportunity for patient choice and self-determination. This article describes the process, outcome and impact of the introduction of an advanced care plan into community and inpatient settings. It demonstrates the usefulness of the tool, and the way in which it improves the chances of people dying in their preferred place of care, particularly when used in the community. It also illustrates the effect on nursing practice of improved patient, family and professional communication, and through that, patient empowerment. It confirms the benefits of integrating evaluation into new initiatives, which facilitates useful feedback to stakeholders.
Supporting cancer patients and their carers: the contribution of art therapy and clinical psychology
Authors: Jones Gudrun , Browning Mary
Published: May 2014

The value of various types of psychosocial support for people with cancer is now becoming well established. Typically the term ‘psychosocial’ includes: counselling and psychotherapy, cognitive behaviour therapy, education and information, and social support. The research literature sometimes fails to clarify the exact nature of the different approaches and their relative efficacy. Inevitably, even within a specific type of therapeutic approach, there is variation owing to the professional background and skills of different practitioners.

This article describes the relative contributions made by an art psychotherapist and a clinical psychologist working together in a cancer and palliative care service in Wales. The referrals come from the same sources and tend to be for similar types of problem. The assessment and formulation processes are also broadly similar. Interventions, however, are markedly different. These are described in some detail through case study examples.
Exploring the literature surrounding the transition into palliative care: a scoping review
Authors: Marsella Amanda
Published: May 2014

This article explores the current literature surrounding transitions into palliative care. Transitions in care have become more frequent and complex in the Canadian healthcare system. Plagued with difficulty, fear and misunderstanding, the transition into palliative care is one of the most confusing and traumatic transitions a patient and family can face. Despite this, however, transitions into palliative care have been commonly overlooked in transitional research. A scoping review of the existing literature on transitions and palliative care was conducted and three key areas complicating the transition into palliative care were noted: the intrinsic nature of the transitions, the timing of the transition, and the lack of information surrounding this transition. This article highlights a need for further research into the complicated area of transitions into palliative care.
Metastatic breast cancer recurrence: A literature review of themes and issues arising from diagnosis
Authors: Warren Melissa
Published: May 2014

An understanding of the impact of recurrent metastatic breast cancer diagnosis is vital to palliative care nurses since the prognosis for such women is generally poor and many present with a complex range of physical and psychosocial problems. However, while many quantitative studies have focused on quality of life in patients receiving different treatments for their metastatic disease, researchers have paid very little attention to the personal impact of recurrent disease and few qualitative papers have been published on this phenomenon. This literature review, therefore, provides an overview of the main issues affecting breast cancer patients with recurrent metastases, and identifies the key differences between this group and those diagnosed with other forms of breast cancer. In total, the literature search identified 10 papers which attempt to describe women’s reactions to a diagnosis of recurrent metastatic breast cancer, although many do not focus solely on the experiences of this group of patients. The review provides fresh insight into these experiences and explores common themes arising from the literature so that nurses may better understand the patient’s experience and respond to their needs appropriately.
The Supportive Care Plan: a tool to improve communication in end-of-life care
Authors: Thompson-Hill Jane , Hookey Claire , Salt Emily , O’Neill Trish
Published: May 2014

The End of Life Care Strategy (Department of Health, 2008a) states that acute hospitals need mechanisms in place to ensure that people who are approaching the end of life have their needs assessed, their wishes and preferences discussed, and an agreed set of actions reflecting these choices recorded in a care plan. The Supportive Care Plan was designed to encourage discussion of patients’ preferences for end-of-life care, and to provide a tool for recording those preferences and communicating them to other healthcare professionals. Initial analysis of the results of a pre- and post-implementation audit of patient notes suggests that there has been an improvement in the documentation about preferred place of care and patient and family understanding of the illness. Fifty per cent of patients who died with a Supportive Care Plan in place died in their first choice of place of care and 22% in their second choice. Feedback from patients and relatives was positive. The main barriers to implementation were difficulties for staff in prognostication, especially for patients with a non-cancer diagnosis, and a reluctance from staff to initiate discussions that were perceived to be too time-consuming. There were also concerns about dealing with the emotions that such a discussion may generate in both patients and relatives.
Moments of realization: life-limiting illness in childhood—perspectives of children, young people and families
Authors: Menezes Antoinette
Published: May 2014

Changing patterns of childhood deaths and survival from once-fatal medical conditions mean that many children and their families face prolonged uncertainty combined with profound needs. Studies of children with life-limiting conditions tend to focus on the acute or terminal stage but rarely investigate the child’s experience of chronic life threat over long periods of time. This article describes qualitative research focused on the experiences of 11 children and young people affected by life-limiting conditions. Parents and siblings were also vital contributors (39 participants from 10 families). The aim was to understand the perceptions and experiences of the child, and to frame that understanding with family insights. This study identified several ‘moments of realization’, representing times in the child’s life when participants recognized the real threat to the child’s life, these included: questions of inheritance, diagnosis and prognosis, acute loss of abilities, slow deterioration and life-threatening surgery.
Assessing the educational needs of palliative care link nurses
Authors: McIlfatrick Sonja , Mawhinney Annette , Gilmour Fiona
Published: May 2014

Background: A key aspect of the provision of high-quality palliative care is ensuring that qualified staff have ongoing education in this area. Aim: To explore the educational needs of palliative care link nurses. Method: A quantitative approach was adopted, using a questionnaire distributed to all of the palliative care link nurses (n=80) in an integrated health and social care trust in one UK region. Findings: Participants demonstrated a clear commitment to and enthusiasm for their role. More than two thirds had already completed some form of palliative care training and considered themselves to already possess the necessary skills, confidence, and competence to be palliative care link nurses. However, this competence tended to relate more to skill-based elements and less towards practice issues. Conclusions: Education for palliative care link nurses needs to incorporate strategies to develop competence and confidence in practice (knowing how) alongside skill-based learning (knowing that).
Palliative care needs of chronically ill nursing home residents in Germany: focusing on living, not dying
Authors: Strohbuecker Barbara , Eisenmann Yvonne , Galushko Maren , Montag Thomas , Voltz Raymond
Published: May 2014

Objectives:

To explore the palliative care needs of nursing home residents in Germany who had not yet entered the dying phase.

Methods:

Semi-structured interviews were conducted with a sample of nine residents suffering from chronic disease or frailty. The interviews were audio-recorded, transcribed, and analysed using a grounded theory approach.

Findings:

The residents described multidimensional needs, which were categorized as ‘being recognized as a person’, ‘having a choice and being in control’, ‘being connected to family and the world outside’, ‘being spiritually connected’, and ‘physical comfort’. They emphasized their desire to control everyday matters. Physical impairment was a problem, especially when independence was threatened, e.g. by immobility or a reliance on pain killers.

Conclusion:

The desire for self-determination is key when designing and evaluating primary and palliative care programmes for nursing homes. Early integration of palliative care can improve the quality of life of chronically ill residents.
Palliative care in advanced kidney disease: a nurse-led joint renal and specialist palliative care clinic
Authors: Harrison Kerry , Watson Sarah
Published: May 2014

The National Service Framework for Renal Services Part 2 identifies quality requirements for end-of-life care for individuals with kidney failure, recognizing the potential to forge closer relationships between renal and specialist palliative care providers. This article describes a pilot project set up by two Clinical Nurse Specialists, one working in hospice specialist palliative care and the other in renal palliative care within an acute trust. The purpose of the pilot was to work in collaboration to run a streamlined nurse-led clinic that would meet the palliative care needs of chronic kidney disease (CKD) Stage 5 patients and their carers. To achieve this the clinic would have to provide optimal symptom management, empower patients to make their own choices, and support them with advance care planning underpinned by the End of Life Care Strategy. The partnership also aimed to promote service improvement and practice development using transference of knowledge, skills, and expertise. Initial informal feedback, including a very small patient survey, suggests that the clinic was well received by patients, carers, and other health professionals. The clinic is ongoing and deserves more formal evaluation to encourage future service development.
Collaborative lymphoedema management: developing a clinical protocol
Authors: Thomson Mary , Walker Jackie
Published: May 2014

Lymphoedema is a very distressing chronic condition prevalent in some metastatic cancers. Conservative treatment of lymphoedema in palliative care involves complete/complex decongestive therapy (CDT) using manual lymphatic drainage (MLD), compression therapy (bandaging and/ or garments), skincare, and remedial exercises, adapted to the needs of the patient. The aim of this service development project was to identify current practice in a hospice palliative care service, develop new assessment tools, and implement a collaborative clinical protocol to improve access to lymphoedema management for patients in the hospice. Two audits provided new evidence about patient profiles, patient assessment, and treatment outcomes for cancer- and non-cancer-related lymphoedema. This project had a quality-improvement effect on service delivery and developed an effective partnership approach to lymphoedema management between local district nursing services and the specialist lymphoedema physiotherapist.
Nursing students' concerns about end of life in California, Norway, and Sweden
Authors: Smith-Stoner Marilyn , Hall-Lord Marie Louise , Hedelin Birgitta , Petzäll Kerstin
Published: May 2014

Aim:

To investigate concerns about dying for newly admitted nursing students from California, Norway, and Sweden.

Method:

A total of 389 undergraduate nursing students who had just started their nursing programme participated. Data was collected with a questionnaire that included two instruments—the Concerns about Dying instrument and the Sense of Coherence instrument—and background questions. The data was analysed using statistical and content analysis.

Results:

There were statistically significant differences between the three groups of students in terms of their age, their experience in health care, whether they had previously attended a dying patient, the age at which they first encountered the death of a loved one, and their concerns about dying. Two main categories emerged from the analysis of the open questions: ‘attending to dying and grieving persons' and ‘thinking about one's own death’.

Conclusion:

The study provides important insights into the concerns that newly admitted students bring to the nursing programme.
Thai Buddhists’ experiences caring for family members who died a peaceful death in intensive care
Authors: Kongsuwan Waraporn , Chaipetch Orapan
Published: May 2014

Aim: To describe the meaning of Thai Buddhists’ lived experiences caring for family members who died a peaceful death in intensive care units. Methods: The study made use of hermeneutic phenomenology. The participants were nine family caregivers from the southern Thailand region. Data was generated from individual interviews, and Van Manen's approach was used to analyse and interpret the data. Findings: Nine themes structured the experiences and were reflected within the four lived worlds of relationality, corporeality, temporality, and spatiality. The participants struggled when making decisions about their family member's life in the context of changing hope. Feelings of stress and exhaustion were common. The participants valued empathetic understanding as a means for maintaining relationships with others in giving and receiving compassionate care. Caring for the self in order to give mindful care and doing one's best in the moment also significantly contributed to achieving a peaceful death. Conclusion: The findings suggest nursing practice guidelines for models of family-centred care and family participation in end-of-life care in intensive care units.
Advance directives: Portuguese Palliative Care Professionals' views
Authors: Pereira Sandra M. , Fradique Emília , Fialho Renata , Cerqueira Manuela , Pereira Aurora , Sampaio Florbela
Published: May 2014

Advance directives are a controversial subject in Portugal at present, particularly among health professionals. Although some health professionals consider them to be important tools that are helpful in making proper decisions and promoting patient autonomy, others think that they may interfere with the human and relational dimension of care. It is therefore timely to investigate health professionals' views of advance directives in more detail. This study aimed to identify and reflect on Portuguese palliative care professionals' perspectives of advanced directives and their relevance to end-of-life decision making. A qualitative exploratory methodology was adopted in which interviews were conducted with two physicians, six nurses, two psychologists, and one social worker from four palliative care teams based across Portugal. The findings emphasize the relevance of advance directives to ethical decision-making processes in palliative care. However, debates are needed regarding whether advance directives should be legally binding.
Adjusting to the caregiving role: the importance of coping and support
Authors: Epiphaniou Eleni , Hamilton David , Bridger Susanne , Robinson Vicky , Rob George , Beynon Teresa , Higginson Irene , Harding Richard
Published: May 2014

Background:

Although informal end-of-life care is associated with significant physical and psychological morbidity for caregivers, few interventions have been developed to meet these needs. This study aimed to identify existing coping and support mechanisms among informal cancer caregivers in order to inform intervention development.

Method:

One-to-one semi-structured qualitative interviews were undertaken with 20 informal cancer caregivers of home palliative care patients.

Results:

Caregivers’ existing coping strategies included distraction, mental stimulation, emotional release, looking for the positive aspects of caregiving, and disengaging from stressful thoughts. The majority of the participants described the importance of support and understanding from family and friends.

Conclusions:

The data suggests that feasible and acceptable interventions will be those that are targeted to caregivers to assist them in optimising existing coping strategies and support from family and friends.