bluuebunny/crossref_metadata_2025_split huggingface dataset:
Community day care at hospice Africa Uganda
Authors: Irumba Lisa Christine , Evelyn Octivia 
Published: March 2012

IntroductionPalliative care is an approach that improves quality of life of patients and their families facing problems associated with life threatening illness, through prevention and relief of suffering by means of early identification and careful assessment and treatment of pain and other problems (WHO Geneva 2004) In Uganda, at Hospice Africa Uganda for years there has been a site day care but with time there was an overwhelming number of patients turn up on that day which is a Tuesday. After realising that there many patients from the same catchment area, a community day care was started in 2007 to provide palliative care to the patients and their families in a place that is closer to their community. Community volunteers helped identify the place. These have been trained in managing the terminally ill with Cancer and or HIV/AIDS in the community.Problem StatementThere was lack of transport by the patients, communities lacked trained health workers especially in palliative care, patients had no main physical carers especially during the day so they are normally left alone at home, sad and quiet.ConclusionThe day care has been a success as the patients turn up is good, and now there is more awareness in the community about palliative care. The patients are able to express themselves and share experiences which helps them gain more knowledge, as well as fight stigma among themselves.
Impact of availability of community-based services at the end of life on preferred place of care
Authors: Wenham Sarah , Naylor Caroline , Huttley Julie 
Published: March 2012

BackgroundIt is well known that approximately 70% people in the UK have expressed a wish to die at home. Currently only about 20% do so, often due to inadequate provision of care at home. There is a strong strategic drive to develop community-based services to narrow this discrepancy between preference and reality. Understanding the personal experience of patients and carers is essential to ensure provision of patient-centred services that meet their needs at the end of life.AimTo determine how the views of patients and carers regarding preferred place of care (PPC) for end of life care differs depending on the level of health and social support available to them at home.MethodA short six question survey was distributed to all patients and carers accessing an integrated Specialist Palliative Care service in the North West of England during 1 week. The patient's Specialist Palliative Care key worker followed up any issues that arose from completing the survey.ResultsThe results will present and discuss the views of service users with regards to: • the PPC of patients and carers given their current level of support at home • patients and carers wishes for community-based services in an ideal world • how the PPC of patients and carers wishes would change if this ideal support were available • patients and carers top three priorities for care in the last weeks and days of life.ConclusionThis survey has identified how patients and carers wishes and preferences for end of life care change depending on the level of support they receive at home. Strategies will be discussed as to how these views could have been incorporated into the redesign of generalist and specialist palliative care services locally.
Face value? Can a face-to-face specialist palliative care team at weekends add value to a tertiary centre?
Authors: Noble Agnes , Coackley Alison , Griffiths Ann , Howarth Susan 
Published: March 2012

BackgroundCurrent NICE Guidelines recommend that acute hospitals should provide access to face to face specialist palliative care assessments, 9 am–5 pm, 7 days per week. Continuity of specialist palliative care input is also highlighted in the End of Life Care Strategy. Tertiary cancer centres are often considered to have higher levels of palliative care skills among medical and nursing staff. The impact/need of a 7 day week specialist palliative care service is unclear. Clatterbridge Centre for Oncology, a tertiary cancer centre, has provided a 7-day service by Clinical Nurses Specialists (CNS) since April 2011.AimTo evaluate the impact of 7 day face-to-face access to specialist palliative care, and to explore how the service is valued and used by oncology staff.MethodA questionnaire was sent to 120 medical and nursing staff.ResultsThe response rate was 48%.Two-thirds of staff had used the service, with 95% finding it very helpful. Pain management was the most common reason for requesting advice (35 occasions). Further common reasons for referral included opioid toxicity, agitation and care of dying patients. Other reasons included chest secretions, vomiting, psychological/spiritual care, and family/carer support. The service was used 1–5 times by 80% of staff, and 6–10 times by 11% of staff. However, 6% of staff used the service on more than 10 occasions. All staff found the CNSs to be accessible (very=88%, quite=12%). The service was considered to be very important or important by 96% of staff. Qualitative information demonstrated that the service was seen as crucial, excellent and was highly valued.ConclusionThis survey demonstrated the need for the service in a regional oncology centre and that it was valued by both medical and nursing staff. The survey also provided information for areas requiring further educational input.
Primary care experience of community specialist palliative care
Authors: Ackroyd Rajeena , Duffy James , Sheils Rachel 
Published: March 2012

BackgroundCommunity specialist palliative care is an important part of a specialist palliative care service, but it is useful to evaluate what primary care professionals think of the current serviceMethodIn October 2010, a questionnaire was sent out to all General practitioners and community nurses in Calderdale with support from the primary care trust.Results252 questionnaires were sent out and 128 replies were received with a response rate of 51%. This included 60 General Practitioners and 68 nurses. 76% GPs and 58 % of nurses said they did refer to the specialist palliative care team. With regard to the overall usefulness of specialist palliative care team involvement on a scale of 1–5(1=poor–5=excellent) the average score was 4.22 83% felt they would refer to the palliative care team on need rather than diagnosis. Only 3% felt that the specialist palliative care team had sometimes been involved inappropriately. With regard to education from the team 56% preferred in house education at their practice rather than evening sessions or study days, with symptom control, non-malignant palliative care and advance care planning being the favoured topics.ConclusionThe aim of the community specialist palliative care team is to deliver a good quality service for the benefit of the patient. Since for the majority of patients their preferred of place of care and death is home it is important that the team work closely with primary care. Overall the response was very positive and provided useful information on the educational needs for community teams. In light of the changes in primary care and the introduction of GP commissioning in the UK this information supports and provides evidence to commissioners and stakeholders of the importance of specialist palliative care in the community.
A collaborative survey to measure the clinical effectiveness of sixteen specialist palliative care teams
Authors: Rock Charlotte , Penny Kirk , Elizabeth Rees 
Published: March 2012

AimTo survey activities undertaken by specialist palliative care teams within the acute hospital setting and community examining referral response times, complexity of caseload and impact/effectiveness of the SPCTs involvement with patients and carers.MethodOver a 2 month period practice across sixteen specialist palliative care teams within the Yorkshire sub regional area was surveyed. A data collection tool was modified from one originally developed In Bradford based on STAS and PaCA. Each team collected consecutive data for thirty patients who had had more than one face to face assessment or until the agreed audit time period had elapsed, whichever was the sooner. Data was collated and analysed using Microsoft Access and SNAP by a central team.ResultsData was collected for 584 patients (315 community teams, 200 hospital teams and 69 dual role teams). Overall 85% of patients had a cancer diagnosis although there were wide variations in numbers of non-malignant referrals by teams. SPCTs demonstrated good response times to referrals despite there being variation in response time standards between locality and setting. Patients presented with multiple needs (average 3 to 4 problems per patient) and 74% had at least one problem scored as moderate to severe. 76% of all moderate to severe physical problem scores and 81% of all moderate to severe psycho-social problem scores were reduced after SPCT intervention (both patient and family).ConclusionWe have demonstrated the possibility of undertaking a regional survey through collaborative working. The survey has demonstrated the complexity and severity of problems seen in patients presenting to SPCTs and in light of these findings, evidence of need to provide 7 day face to face access to SPC should be reviewed. Common standards for initial response time contact, face to face assessment and discharge should also be agreed across the sub regional teams.
Macmillan development project at the James Cook university hospital
Authors: Walker Jane , Hunter Noeleen , Harris Andrea , Nicholson Alexander 
Published: March 2012

BackgroundNational initiatives increase demand for health professionals with palliative care skills to improve patient experience, enhance patient quality outcomes and increase job satisfaction for staff working with complex clinical cases. Failure to recruit into a vacancy within the Trust's Specialist Palliative Care Team (SPCT) highlighted weaknesses in succession planning and poor development of skills within nursing establishment.AimsTo increase palliative and end of life care expertise in the nursing establishment. To improve education of peers To support the support governance agenda of palliative and end of life care including To support implementation of local and national guidelines.MethodFunding from Macmillan Cancer Support enabled recruitment for 2 years at a Band 6 level providing six possible 4-month secondments (‘support sister’) within the SPCT. Carefully structured training programmes were devised based on secondees' existing skills and linked to the KSF. Learning objectives included • Increased knowledge of pain and symptom guidelines • Improved understanding of referral to SPCT • Improved liaison with community services • Increased confidence in use of end of life care pathway and negotiating preferred place of care.OutcomesThree nurses have completed secondments and all reported improved knowledge and skills. Two are now working in the SPCT, one as Macmillan Discharge Sister and one as Palliative Care Support Sister covering a colleague's reduced hours.ConclusionThe programme is on-going. While the first participants' reports of increased knowledge and confidence are encouraging, we plan assessment of impact back in the usual clinical team in the second phase of secondments. The project has supported recruitment to vacancies in the SPCT. The next phase will offer two 6-month opportunities since feedback indicates 4 months was slightly too short to consolidate all new learning.
Breaking bad news to people with learning disabilities
Authors: Tuffrey-Wijne Irene 
Published: March 2012

IntroductionCurrent models for breaking bad news are inadequate in meeting the needs of people with learning disabilities (LD). People with LD are often not told of a life-limiting diagnosis. The task of breaking bad news is often left to carers who are poorly prepared and supported to cope with this.AimsTo explore how people with LD understand and communicate about illness. To explore the experiences and preferences of people with LD, families and professionals around breaking bad news. To identify the factors that affect breaking bad news to people with LD.Methods109 participants took part in nine one-to-one interviews and 13 focus groups (including three on-line groups) across England. Participants included people with LD (21), family carers (28), LD professionals (26), general health professionals (33) including cancer and palliative care nurse specialists and physicians (GPs and palliative care consultants).ResultsPeople with LD have wide-ranging views about whether and how they want to be told bad news. Both LD and healthcare professionals lack confidence in communicating bad news to people with LD. Many family carers want to protect people with LD from bad news. Bad news should be given in chunks, depending on the person's abilities and needs. All those around the person with LD can and should contribute to this. Most people with LD make sense of bad news within their social context, rather than in a doctor's office.DiscussionRather than ‘breaking bad news’, the key is to help someone understand and cope with a changing situation. This is a gradual process. A new model for breaking bad news to people with LD has been produced and will be presented as a poster.
Predicting prognosis: experience of a tertiary referral cancer centre end-of-life care service
Authors: Boyle Leanne , Smith Clare , Stevens Anna-Marie , Riley Julia 
Published: March 2012

BackgroundThe UK End-of-Life Care Strategy advocates providing choice for terminally ill patients. People want to die at home however 58% of people die in hospital. The Royal Marsden Hospital introduced the Hospital2Home (H2H) Service to bridge the gap for patients who are no longer receiving anticancer treatment by conducting a community based case conference. The aim to facilitate patient choice by encouraging participation in advanced planning. One barrier to planning at the end-of-life is the difficulty in predicting prognosis.AimThis audit examines the accuracy of the clinically predicted prognosis in patients referred to the H2H service.MethodThis was a retrospective audit analysing data collected in the routine clinical service. Patients referred to the service are assigned a predicted GSF prognostic indicator (A=Years, B=Months, C=Weeks or D=Days). This was compared to survival.Results308 patients have had a H2H case conference, 270 have now died. The median overall survival is 29 days (min 1, max 653). The accuracy of predicting prognosis per group is: • Group D (Days): 8 patients were given a prognosis of days. 6/8 (75%) died within days. • Group C (Weeks): 132 patients were given a prognosis of weeks. 60/132 (45.5%) died in weeks, 42/132 (31.8%) in months and 30/132 (22.7%) in days. • Group B (Months):122 patients were given a prognosis of months. 79/122 (64.8%) died in months, 11/122 (9.0%) in days, 30/122 (24.6%) in weeks and 2/122 (1.6%) survived over 1 year. • 8 patient's data missing. Overall clinicians were accurate in 53.7% of cases, over optimistic in 26.3% and under estimate prognosis in 17%.ConclusionPrognostication is difficult. It is understandable that professionals have concerns about predicting prognosis. If anything we overestimate. Therefore if patients are to be told prognosis then the uncertainties around this prediction should be clearly explained.
Role of community volunteer worker in a resource limited setting
Authors: Nazziwa Octivia 
Published: March 2012

IntroductionCommunity Volunteer workers are important and unique means of reaching vulnerable population and giving basic palliative care at the grassroots community level. While others create awareness about palliative care and HIV/AIDS, mobilisation of community among others.Project DescriptionCommunity volunteers were identified and empowered through training and support care in Hospice Africa Uganda, The project started in 2002 and continued up to date, in the three Hospice Model sites, the main aim is to identify patients with pain and symptoms, and other or bedridden due to advanced disease and referred for palliative care and also they provide care.ConclusionTraining and development programs are the best means of fulfilment to suitable, affordable and accessible palliative care services in the subSaharan Africa countries.
Hospital specialist palliative care units – an innovative model delivering cost-effective choice?
Authors: Paes Paul , Grogan Eleanor , O'Neill Cate , Peel Tim 
Published: March 2012

BackgroundThe End of Life Strategy makes clear the importance of patient choice. The subsequent drive towards community end of life care masks the reality that even in the best performing areas, over 40% of people will continue to die in hospital. Patient's preferences change as death approaches, with the popularity of hospices significantly increasing. This paper describes one approach by a NHS trust seeking to improve the delivery of palliative and end of life care. The trust made a strategic decision, alongside community initiatives, to invest in a 19 bedded hospital palliative care unit.AimTo examine the effectiveness of a hospital palliative care unit.MethodsThe effectiveness of the unit was measured in terms of patient statistics, complexity and quality of care.ResultsThe average length of stay was 13 days, proportion of patients who died 62% and occupancy running over 80%. Patient experience data demonstrates high levels of satisfaction, especially in the domains of pain control, respect and dignity, doctors and nurses. Patients were found to have a poorer performance status and require non-oral drugs than a nearby hospice. Staff satisfaction was high. Overall trust performance in Liverpool Care Pathway measures also improved over this time.ConclusionThe unit successfully improved the general dissatisfaction with hospital palliative and end of life care. Positive patient/family feedback and high usage demonstrated that this model could achieve 3 goals: -a better level of palliative care for patients than can be delivered in non-palliative care environments -a cost-effective model: the costs were the same as other medical wards -patient choice. The number of patients who died in a palliative care setting raised the proportion of patients dying in a specialist palliative care environment to the highest in the country. A second unit will open shortly.
Current end of life care practices in an acute hospital trust – important lessons
Authors: Frame Karen , Ring Fiona , Howard Diana , Urch Catherine 
Published: March 2012

BackgroundAdvanced care planning (ACP), communication surrounding dying, use of end of life (EOL) care pathways and achievement of preferred place of care (PPC) and death (PPD) are key components of quality EOL care. A baseline audit of current practice across 3 London acute hospital sites was carried out in 2010.MethodsRetrospective case note audit of 163 consecutive adult patient deaths (excluding dead on arrival). Data extracted and analysed using Microsoft excel.ResultsMean age 73.8 years (22–99), mean admission 19.2 days (0 – 120). Commonest reason for admission was sepsis 45 (28%), however 79 (48%) of patients had more than one significant underlying medical condition 34 (21%) had >2. 53 (33%) had underlying malignancy. 143 (88%) had DNAR orders, 1 patient had an advanced decision to refuse treatment. Ceiling of intervention documented in 94 (58%). 72 (45%) had no documentation of communication with carers, of these 51 (70%) had DNAR orders. 39 (24%) deaths were on the LCP, mean length of time on LCP 48 h (0–11 days). PPC recorded in 25, 22 as part of LCP documentation. When on the LCP, PPC hospital 13 (52%), home 7 (28%), PPD Hospital 11 (44%) Home 3 (12%).DiscussionDespite limitations of retrospective case note studies this audit is important. Doctors are recognising dying in most patients; signing DNAR and documenting ceiling of intervention. There is evidence of room for improvement in relation to ACP and communication documentation. PPC and PPD was recorded in 15% patients, most on the LCP, representing the dying phase of illness. The PPC data documented differs considerably from national figures PPC hospital 12% home 58%. This may reflect sample size but could represent a change of preference in PPC or PPD in very ill patients or reflect conversations being left too late in patients already on the LCP. It is an important finding needing replication and further investigation.
Sexuality at end of life: the silent bedfellow
Authors: Taylor Bridget 
Published: March 2012

BackgroundSexuality is a holistic concept that includes physical, psychological and social aspects of people's well-being. As the aim of palliative care includes supporting patients to live as actively as possible until death, as well as supporting those that are significant to them, it would seem reasonable to expect that sexuality would be included. However, what is not clear is whether sexuality continues to be important for people in the UK who are dying.AimTo understand the experiences of patients and partners of patients living with a life-limiting illness in relation to sexuality and intimacy.MethodThis qualitative study used a Heideggerian hermeneutic methodology. One-to-one interviews were conducted with 27 patients and 14 partners of patients who had either motor neurone disease or terminal cancer. Each person was interviewed twice and couples were interviewed separately. Audio-recorded data were analysed using Diekelmann and Ironside's seven-stage process to uncover shared meanings. This iterative process is fundamental to Heidegger's hermeneutic circle of interpretation.FindingsThis paper presents one of the themes, ‘the silent bedfellow’. Participants described times ‘when words fail’ and they experienced ‘disconnecting’ within their coupled relationship. In contrast, ‘when words speak’ brought about ‘connecting’, even though this was not always in ways that had been expected. It was rare for people to be given opportunities to discuss their fears or concerns about sexuality with palliative care professionals. Participants gave practical suggestions for ways that professionals can broach this aspect of people's relationships.ConclusionsPalliative care professionals who support holistic care and promote quality of life have a role in providing opportunities for discussing these issues with patients and their partners.