bluuebunny/crossref_metadata_2025_split huggingface dataset:
EVALUATION OF SHORT AND LONGER-TERM SURVIVAL FOLLOWING NON-RESECTIONAL PALLIATIVE SURGERY FOR ADVANCED COLORECTAL CANCER
Authors: Oliphant Raymond , Dawson Camilla , Horgan Paul , McMillan Donald , Morrrison David 
Published: February 2014

IntroductionPalliative surgery for advanced colorectal cancer is associated with high morbidity and mortality. Non-resectional palliative surgery can be useful in the management of malignant bowel obstruction or perforation where a conservative approach can be associated with high symptom burden and imminent death. The aim of this study was to evaluate short and longer-term outcomes after non-resectional palliative surgery for advanced colorectal cancer.MethodsPatients undergoing non-resectional surgery for colorectal cancer in 16 hospitals from 2001–2004 were identified from a prospectively maintained regional audit database. Post-operative mortality (<30-days) and relative survival were used to examine short and longer-term outcomes.ResultsA total of 225 patients were included, of which 141 (62.7%) were male. The median age at surgery was 69.3 years (s.d. 11.2; range 30.8–95.9 years). A total of 107 (47.6%) patients had rectal cancer and 160 (71.1%) had evidence of distant metastases. Ninety (40.0%) patients presented for surgery as an emergency and 135 (60.0%) presented electively. One hundred and fifty nine (70.7%) patients underwent the creation of a defunctioning proximal stoma and 63 (28.0%) had a bypass procedure. The overall post-operative mortality rate was 20.9%. Post-operative mortality was higher among emergency compared to elective presentation (36.7% versus 10.4%; p<0.001). Overall 1-year relative survival was 27.1%. One-year relative survival was higher among elective compared to emergency presentation (37.1% versus 11.9%; p<0.001).ConclusionsShort and longer-term outcomes after non-resectional palliative surgery for advanced colorectal cancer are worse after emergency compared to elective presentation. Therefore, members of the palliative care team must be alert to symptoms of impending complications of advanced colorectal cancer to enable timely referral for surgical intervention on an elective rather than emergency basis.
‘MY DOCTOR’: PATIENT AND CARER EXPERIENCES OF THE GP ROLE FOR PEOPLE IN THE LAST YEAR OF LIFE
Authors: Hardy Beth , Nigel King , Alison Rodriguez 
Published: February 2014

BackgroundThe General Practitioner (GP) is an important provider of care for people with advanced disease and at the end of life. The GP, in combination with other members of the primary health care team, occupies a pivotal position in delivering end of life care in the community (Thomas, 2009). However, little is known about how patients and spousal carers understand this role, and experience GP involvement in their care.AimsTo describe patient and spousal carer experiences of the GP in their care, in the last year of life.MethodsPhenomenological methodology was used to illuminate the lived experience of patients and carers in relation to the involvement of health care services. Twelve patients assessed as being in the last year of life and eight spousal carers participated in interviews which utilised the visual method ‘Pictor’ to promote reflection and discussion of roles and relationships with their care team. Data were analysed using phenomenological techniques supported by Template Analysis.FindingsThe GP role is important to patients and carers, who have a strong perception of the care that they feel the GP should be providing. The GP is often described as ‘my doctor’ and people desire regular GP involvement in their care, even where there is no acute need, and to feel that the GP recognises their illness experience and knows them as an individual. Where this relationship does not exist, dissatisfaction with the service can be present, even when people are confident that the GP would be involved in care if it was requested.ConclusionsPatients and spousal carers have strong perceptions of the GP role in the care of people with advanced disease. Sometimes these perceptions do not match their experiences of care provision which can lead to dissatisfaction with care.
NURSES' ROLES IN ANTICIPATORY PRESCRIBING IN END OF LIFE CARE
Authors: Wilson Eleanor , Seale Clive , Payne Sheila , Brown Jayne , Seymour Jane 
Published: February 2014

BackgroundIn the UK, a key approach to improving symptom control in end of life care in the community has been the use of ‘anticipatory’ or ‘just in case’ prescriptions. There is almost no research on nurses' roles in this area.AimTo determine the roles and experiences of community nurses in end of life medication decisions involving anticipatory prescriptions.MethodologyA mixed methods study in two UK regions. An ethnographic study was conducted with community nursing teams (4) and in nursing homes (4), engaging health care professionals involved in prescribing, issuing and using anticipatory medications. In addition, 1558 community nurses were surveyed.ResultsObservations (n=83) and interviews (n=72) were conducted with nurses, GPs and pharmacists. The overall response rate to the survey was 37% (n=574), with categories of nurses' response as follows: community (n=192/25%), care home (n=231/50%), specialist palliative care (n=151/48%). 84% of nurses reported having provided care to adult patients who were dying during the past year. 98% of these said that an anticipatory prescription was in place for at least one of those patients. Nurses took a key role in prompting GPs to consider anticipatory prescriptions, encouraging them to write prescriptions correctly and enabling timely dispensing. They took responsibility for recognising the need to implement the prescription and administering the medications. Most respondents (96%) agreed that when anticipatory prescriptions were in place they enabled them to improve the quality of end-of life care. However, nurses with less experience often found their responsibilities burdensome. Nurses were concerned about ‘over’ and ‘under’ medicating patients and using medication at the ‘right time’.ConclusionsThis study highlights the significant responsibilities of nurses in all aspects of the anticipatory prescribing process and identifies a number of areas where support for nurses could be improved to promote quality care at end of life care in community settings.
THE EMOTIONAL RESPONSES OF STAFF TO MOVING TO A NEW HOSPICE BUILDING
Authors: Murray Jane , Armour Kathy , Meystre Chantal 
Published: February 2014

BackgroundWork relocation is a major change and stressful, not only due to change in layout and functional delivery (Peach, 2005) but particularly, in palliative care, where memories are attached to the original worksite (Murphy, 2012). Research applying attachment theory links places to identities, giving insight to the stress and loss of moving (Speller, 2000). Our hospice was relocating nearby to a bespoke unit from a building occupied for nearly 50 years. Project planning managed practical issues but psychological and emotional aspects of the move were undefined.AimTo explore staff and volunteers experiences of moving at the time of a hospice relocation.MethodsAll hospice staff were eligible for the study and invited to anonymously complete a modified adult attachment questionnaire (Brennan, 1998), with additional quantitative and semi-structured qualitative elements, in the week prior to relocating. Staff views were triangulated with returns from volunteers. As no conflicting themes emerged they are reported together.Results29 clinical staff, 5 non-clinical staff and 8 volunteers participated (31% return rate). Their average length of service was 6.2 years ranging from <1–23 years. Thematic analysis revealed major themes around memories and remembrance; atmosphere created by caring staff and volunteers; experiences with patients, families and colleagues; and a positivity regarding caring in the new environment. Some staff were experiencing anticipatory grief and some required ways of ending an era.ConclusionThe study captured a unique exploration of staff emotional reactions to relocating. It demonstrated that anxiety was related to an unconscious anticipatory grief linked to memories and experiences within the existing hospice, not an attachment to the building as the quantitative results (Meystre, 2013) suggested. This realisation demonstrates the power of mixed method studies to investigate complex phenomena within palliative care.
INFORMATION AT DIAGNOSIS OF HUNTINGTON'S DISEASE (HD), MOTOR NEURONE DISEASE (MND) AND PROGRESSIVE SUPRANUCLEAR PALSY (PSP)
Authors: Scholes Carol 
Published: February 2014

IntroductionPeople with a long term condition require information in order to self manage and make informed choices. Access to timely information can be challenging for people with rare conditions.AimTo document information given at diagnosis of HD, MND and PSP and ask whether people can now make informed choices.MethodA postal questionnaire was sent to 150 people living with HD, MND and PSP in Hertfordshire regarding knowledge of their disease before diagnosis, information given at diagnosis including supporting services, and ability to make informed choices.Results62 (41%)–6 HD, 39 MND, 17 PSP- questionnaires were returned1)Did you know anything about your condition before you were diagnosed?Overall 19 (31%) Yes, 43 (69%) No“Yes” by diagnosis–4 (66%) HD, 13 (33%) MND, 2 (12%) PSP2)At diagnosis were you given information about your condition?Overall 42 (66%) Yes, 16 (26%) No, 4 (7%) unsure.“Yes” by diagnosis – 5 (83%) HD, 26 (67%) MND, 11 (65%) PSP3)Were you told about services that could support/help you and how to access them?Overall 40 (65%) Yes, 21 (33%) No, 1 (2%) unknown.“Yes” by diagnosis – 6 (100%) HD, 28 (72%) MND, 6 (35%) PSPQuestion breakdown revealed information on carer support/respite most frequently unavailable but needed (11 overall – 8 MND, 2 PSP, 1 HD)4)Do you feel enabled to make informed choices about living with your condition?Overall 41 (66%) Yes, 15 (24%) No, 6 (10%) unknown“No” by diagnosis – 1 (17%) HD, 7 (18%) MND, 7 (41%) PSPConclusionsAt diagnosis, people with HD feel the most and PSP the least informed about their condition and local support available. Lack of information and local support may have affected ability to make informed choices. Service development should reflect these findings.
EVALUATION OF OPIOID USE IN CANCER PATIENTS AT NATIONAL HOSPITAL AND CANCER RESEARCH CENTER, KATHMANDU, NEPAL
Authors: Piya Madan , Chapagain Sandhya 
Published: February 2014

BackgroundNepal is a developing country with an increasing burden of cancer. Coupled with increasing healthcare costs and lack of health insurance, the focus has always been on treatment of cancer, rather than pain or symptom relief. Opioids have recently become more readily available at low costs in Nepal.Aims and MethodsThe aim of this study was to assess the pain score in patients with advanced stage cancer, and the effectiveness of pain control in these patients with the use of simple opioids in outpatient clinics. Between January and July 2013, patients attending the outpatient clinic in National Hospital and Cancer Research Centre, Kathmandu, with a histological diagnosis of cancer with pain score of two or more (Wong Baker Scale, 0–5), were enrolled in the study following written consent. Patients were started on immediate release morphine 5mg in the outpatient clinic, and pain score was revaluated after one hour and after 2 days, to assess the need for other analgesia.Results40 patients were included in the study, 42.5% male, mean age of 55±10 years. Pain score out of five was two in 35%, three in 45%, and four in 20% of patients. Patients were given 5mg of immediate release morphine. As expected, after one hour, pain score reduced to one in 27% of patients and two in 73%. Patients were advised to take 5mg immediate release morphine every 4 hours and as required. After 48 hours, the pain intensity was significantly lower than baseline, with one in 22%, two in 35%, three in 39% and four in 2%, and only 48% of the patients required additional analgesia.ConclusionOpioid analgesia remains the standard of care in pain management. It is affordable, easily tolerated and can be delivered in outpatient settings, even in developing countries like Nepal.
WITHDRAWAL OF NIV AT THE PATIENT'S REQUEST IN MND: EXPLORATION OF THE ISSUES RELATED TO COMMUNICATION
Authors: Faull Christina , Phelps Kay , Regen Emma , Oilver David , Mcdermott Christopher , Rowe-Haynes Cassy 
Published: February 2014

BackgroundLittle is known about the withdrawal of NIV at the request of a patient who has become dependent on it. The NICE guidance on the use of NIV in MND (2010) identifies the lack of clarity in how this process should be facilitated, suggesting interviewing the professionals involved in such events as a focus of research.AimsTo explore issues related to communication in decision making about the withdrawal of NIV.MethodA retrospective qualitative interview study of the experiences of 20 Doctors including specialists in palliative care, respiratory, neurology and family practice.ResultsThe loss of the ability to communicate was a trigger for many patients to request withdrawal of NIV. Other patients vacillated in making a decision or were more reticent about discussions on continuance and doctors narratives suggested increasing desperation to try and establish their wishes before communication was lost. In the context of profound difficulty in communication and high levels of fatigability for the patient this was often time extremely consuming.Doctors required sophisticated communication strategies to ensure capacity was established and their impression of the patient's view was accurate and consistently expressed.Family were often in the position both of identifying that patients wanted to request that NIV was withdrawn and providing the evidence for the doctor of the patients understanding of the consequences.The loss of the ability of patients to communicate and move meant doctors needed to make judgments about the patients' level of distress and the efficacy of symptom management.ConclusionsLoss of communication is a key trigger for requesting withdrawal of NIV. However many patients' wishes are not known before developing profound communication difficulties. Establishing the wishes and comfort of patients with communication difficulties is complex, time consuming and worrying for doctors who need high level skills.
IS LONG-TERM LOW-MOLECULAR-WEIGHT HEPARIN STILL ACCEPTABLE TO PALLIATIVE CARE PATIENTS IN THE TREATMENT OF CANCER-ASSOCIATED THROMBOSIS? A QUALITATIVE STUDY REVISITED
Authors: Seaman Siwan , Nelson Annmarie , Noble Simon 
Published: February 2014

BackgroundThe treatment of cancer-associated thrombosis (CAT) is well established as a daily injection of weight-adjusted low-molecular-weight heparin (LMWH). Previous qualitative research suggesting LMWH to be acceptable in the palliative care population had several recognised limitations including selection bias and limited time on LMWH treatment.AimsTo revaluate acceptability of LMWH as a long-term treatment for patients with advanced cancer and venothromboembolic disease within the context of current clinical practice.MethodsA qualitative study of advanced cancer patients who had been receiving daily treatment dose of LMWH for CAT for at least 3 months. Patients were recruited from dedicated CAT clinics. Semi-structured interviews were recorded, transcribed and analysed using thematic content analysis until theoretical saturation was achieved.ResultsFourteen patients were interviewed who had been on LMWH for an average of 11 months (range 3–34 months). Major themes included the impact of CAT, acceptability of LMWH and practicalities of injection. Many participants described the symptoms of their CAT as more burdensome than their cancer. Despite some of the challenges described with LMWH therapy it was generally considered an acceptable treatment with the perceived benefit of prolonging life outweighing the discomfort and burden of daily injections. Participants described several practical measures they had implemented to simplify their treatment.ConclusionsLong-term LMWH remains an acceptable intervention in patients with advanced cancer and venous thromboembolism. Whilst new oral anticoagulants may offer an alternative to daily injections they are yet to demonstrate non-inferiority to LMWH. LMWH therefore remains the drug of choice in the treatment of CAT in the palliative care setting.
RELATIONSHIPS AND SEXUALITY IN YOUNG ADULTS WITH LIFE-LIMITING CONDITIONS IN THE UK
Authors: Blackburn Maddie , Earle Sarah , Komaromy Carol 
Published: February 2014

BackgroundUntil recently surviving into adulthood with a life-limiting condition was rare, and as such, young(er) adults with life-limiting conditions are now a unique population about whom it is timely to explore their considerations about sexuality, relationships and reproduction. Young adults with chronic conditions diagnosed in childhood, especially those which are life-limiting or life-threatening may well be less mature than their healthy peers( Beresford, 2013) but may still desire to experience an intimate relationship. The' emerging adult's' survival into adulthood is due to advancements in medicine and technology (Craig & Lidstone, 2012). This research builds upon the first author's previous research into the sexuality of young adults with neural tube defects (Blackburn, 2002; Blackburn, 2008) and is the focus of her current PhD.AimsThe research is exploring:The views and experiences of young(er) adults with life-limiting conditions about relationships, sex and reproduction?How young(er) adults with life-limiting conditions may best be supported in making relationships, sexual and reproductive choices?The views of their carers, professional staff, family members and friends who support them?MethodologySemi- structured Interviews are being conducted with young people over 16 years with Cystic Fibrosis and Duchenne Muscular Dystrophy, as well as the carers and professionals who support them. The data will be analysed using NVIVO software.ResultsPilot data and early findings from the main study will be addressed plus the ethical issues of undertaking sensitive research about sexuality with young adults with life-limiting conditions.ConclusionsThese will be addressed in 2014.
WHOSE DECISION IS IT ANYWAY? PLANNING FUTURE CARE AT THE END OF LIFE FOR CARE HOME RESIDENTS
Authors: McGlinchey Tamsin , Saltmarsh Philip , Bancroft Rebecca , Mason Stephen , Gambles Maureen , Corcoran Gerard , Ellershaw John 
Published: February 2014

BackgroundAdvance Care Planning (ACP) is a process of discussion and shared decision making between an individual and their care provider. Discussion takes place in the context of an anticipated deterioration of the individual's condition. Shared decision making promoted by ACP has been highlighted as a key component in coordinating care at the end of life. This has particular significance for people who may lose mental capacity, enabling them to discuss, plan and document their wishes for possible future care.Greater understanding of how ACP may support patients and their families is required. Accordingly, a study is currently engaged in the Care Home (CH) setting to assess the impact that ACP discussions have on all participants; residents, relatives/friends and healthcare professionals.Aim(s)To examine; the timing of discussions around residents choices at the end of life and planning for future care the process of shared decision making in ACP.Method(s)Interpretive phenomenology underpin the research methods employed; In-depth semi-structured interviews with CH residents (where possible), relatives/friends of residents and health care staff are being undertaken using a longitudinal case study design (n=10):Initial interview after first ACP discussionFollow up interview(s) at 3 monthly intervals throughout the study periodPost bereavement interview with relative/friends and healthcare professionalsResultsResults to date show discussions about choices at the end of life and planning for future care are mostly happening between relatives and health care professionals due to a lack of mental capacity in care home residents at the time of ACP discussions.Conclusion(s)More understanding is required, why discussions about choices at the end of life and planning for future care with residents in Care Homes are not taking place earlier in the residents disease trajectory and whilst they have capacity.
IS PEER-LED PALLIATIVE CARE TEACHING EFFECTIVE AND ACCEPTABLE?
Authors: Porteous Anna , Paxton Ann , MacCormick Fiona 
Published: February 2014

BackgroundPeer-assisted learning is an established and validated approach to undergraduate education. The peer approach to educating qualified doctors, however, is in its infancy. As such, evidence of the efficacy and acceptability of this educational model is only just emerging. A peer-led Palliative Care study day has been developed by Specialty Trainees in Palliative Medicine in the North East of England and has provided education to five cohorts of junior doctors.AimsTo evaluate the efficacy of a peer-led Palliative Care teaching programme, in terms of knowledge and confidence gained. To evaluate the acceptability of a peer-led Palliative Care teaching programme, specifically in comparison with consultant-led teaching.MethodsParticipants' knowledge and confidence was assessed before and after the study day, using a Multiple Choice Questionnaire (MCQ). Participants in the most recent cohort completed a questionnaire evaluating the acceptability of peer-led teaching.ResultsCombining data from two consecutive study days, the MCQ knowledge scores of 48 participants rose from 50% to 87%. Participants' confidence in managing patients with palliative care needs rose by 38%. All participants reported the teaching to be comparable to, or more effective than consultant-led teaching. Twelve out of 13 participants found peer teachers to be more approachable than consultants. More than half found the relevance, content, preparation and organisation to be more effective than consultant-led teaching.ConclusionsWe demonstrate that peer-led teaching is an effective and positively evaluated method of teaching junior doctors. Successful education relies upon the ability to create a non-threatening atmosphere conducive to learning and the grounding of content in relevant, contextual material. This may be better judged by peers than consultants. Research to assess sustained educational impact, benefits to peer teachers, and economic advantages of this approach would further enhance the application of this developing model in postgraduate clinical education.