bluuebunny/crossref_metadata_2025_split huggingface dataset:
HELPING PEOPLE WITH VERY SEVERE COPD: FEASIBILITY STUDY OF A NOVEL HOLISTIC INTERVENTION
Authors: Kendall Marilyn , Buckingham Susan , Ferguson Susie , Sheikh Aziz , Murray Scott , MacNee William , White Patrick , Worth Allison , Boyd Kirsty , Pinnock Hilary 
Published: February 2014

BackgroundChronic Obstructive Pulmonary Disease (COPD) is the third leading cause of death worldwide. Research shows that people with severe COPD have unmet needs and that the traditional palliative care model is not appropriate.AimTo pilot and evaluate the HELP-COPD intervention–a proactive holistic assessment of supportive and palliative care needs.MethodThe intervention comprised a home visit by a respiratory nurse, following discharge from hospital after an exacerbation, to discuss social/psychological/spiritual/physical needs, provide advice/information and make further clinical/social care referrals as appropriate. A HELP-COPD Action Plan was completed and a summary given to the patient and their general practitioner. Follow-up included three phone calls over six months.Qualitative evaluation comprised interviews with participating patients, lay-carers and health professionals, alongside documentary analysis of the completed action plans. Interviews were recorded, transcribed and entered into NVivo for thematic analysis.Results23 patients, from two hospitals, received the pilot intervention. 31 interviews were completed. Patients were generally positive about the assessment, openly discussing concerns and coping strategies in all domains. Professionals considered that the intervention was feasible and potentially valuable. Positive actions included facilitating discussion with their GP on palliative use of opiates, reinforcing referral to pulmonary rehabilitation and providing contact details of local voluntary services. However, fewer unmet needs were identified than expected, and some patients were reluctant to access proffered services/information. Participants highlighted overlap with discharge planning and case management provided by community teams.ConclusionThe HELP COPD holistic assessment was feasible and generally welcomed by patients. Fewer actions were identified than anticipated; perhaps due to a combination of inappropriate timing, reluctance to accept social services, duplication by existing services and long-term adaptation reducing recognition of need and of the seriousness of the condition.Conflict of Interest and FundingThis work was supported by The Dunhill Medical Trust [grant number: R210/0711]. No conflicts of interest to declare.
RENAL FUNCTION AT THE END OF LIFE, A SNAPSHOT OF RENAL FUNCTION
Authors: Salt Susan , Heaton Sophie 
Published: February 2014

As a result of the concerns raised about the use of artificial hydration at the end of life which has led to the phasing out of Liverpool Care Pathway, a review of 50 consecutive patient's blood results, who had died since January 2013 on an adult hospice in-patient unit was conducted looking for trends that could be explored further.Results2 patients did not have any recorded blood tests within 4 months of their death so were excludedInterval before deathNumber of patientsUrea above normal rangeCreatinine above normal rangeBoth abnormal3 days or less87 (88%)( max 36.6)8 (100%)(max 285)74–7 days before death93 (33%)(max 9.2)2 (22%)(max 150)18–14 days before death137 (54%)(max 21.5)4 (31%)(max 172)2More than 14 days before death187 (39%)(max 15)3 (17%)(max 179)2The remaining patient results were as followsThis initial survey suggests some interesting trends.The next 50 consecutive deaths in the hospice are being analysed and more in depth analysis in terms of diagnosis and renal function six months prior to death is currently being carried out.These results will be part of the final presentation.ConclusionThis is a snapshot of one hospice clinical review of patients blood test, rather than part of a structured clinical study. It is therefore uncontrolled and will have inherent bias. For example it is more likely that blood tests will be carried out if there is concern about impaired renal function, and this is more likely to happen closer to death. However the initial results suggests that both creatinine and urea levels do increase the closer death is, but not to catastrophic levels.
EXPERIENCE OF LIVING WITH ADVANCED HEART FAILURE IN UGANDA
Authors: Namukwaya Elizabeth , Murray Scott , Leng Mhoira , Downing Julia , Grant Liz 
Published: February 2014

BackgroundHealth systems in Africa which were mainly designed to manage acute communicable diseases based on a biomedical model now need to be able to handle the emerging non-communicable disease epidemic. Cardiovascular diseases such as heart failure are increasingly prevalent. Research from high income countries reveals that patients with heart failure have multidimensional needs especially a high symptom burden even when on drugs with a mortality benefit. We predict outcomes are likely to be even worse in African settings where access to these drugs is limited and poverty is rampant. Currently palliative care is mainly for HIV and cancer patients and has little impact on heart failure patients. In order to plan care based on needs it is necessary to elicit patients' perspectives of their needs and experiences of living with incurable illness.AimTo understand the multidimensional experiences, needs, and use of services of patients living and dying of heart failure.MethodsIn depth qualitative interviews are being conducted using the grounded theory approach with patients with heart failure recruited in Mulago hospital in Uganda. The interviews are supplemented by administering the African APCA POS questionnaire. Purposive sampling is being used for recruitment. Thematic saturation is expected to be achieved at a total of about 16 patients.ResultsPreliminary analysis has identified the following themes: Lack of awareness of symptoms of heart failure which lead to late presentation, association of symptoms to witchcraft, significant distress from physical symptoms, recurrent admissions, increasing dependency associated with loss of dignity, loss of valued self, psychological distress, different theological ideas relating illness and the Divine and financial problems.ConclusionHeart failure patients in Uganda have multidimensional needs some of which are similar to high income countries but others are unique to the African setting. Such patients could greatly benefit from a palliative approach.
INTEGRATING PALLIATIVE CARE SERVICES IN LOW SOCIAL ECONOMIC STATUS
Authors: Kinyanjui Asaph 
Published: February 2014

To offer quality and sustainable palliative care services there is need to equip health care workers with appropriate knowledge, attitude and skills.Waterloo ProjectThe project was based on WHO Public Health Model.The project was funded by The Diana Princess of Wales Memorial Fund and The True Colours Trust Fund. Other key stakeholders: Kenya Ministry of Health, Kenya Hospices and Palliative Care Associations, and African Palliative Care Association.Back groundThe overall purpose of the Waterloo project is to improve the quality of the lives of those affected by life threatening illnesses by ensuring freedom from pain and other distressing symptoms, providing psychosocial, spiritual and bereavement support through integration of palliative care in to the public health systems.MethodAt the start of the project, a comprehensive data collection questionnaire was designed to collect baseline information on; hospitals with established palliative care services, type of services offered, staff trained in palliative care, availability of morphine and existence of a stand alone palliative care team. 11 level 5 hospitals were the focus of this project.SuccessesThrough KEHPCA and Ministry of Health the following have been achieved;A) 9 hospitals in have fully integrated palliative services.B) 220 healthcare workers have received 5 days training course.C) More than 4oo doctors sensitized on palliative care especially pain management.D) Inclusion of palliative care needs in some hospital budgets.ChallengesHigh turnover of hospital administrators in some hospitals affecting the integration of services.Some staff trained in palliative care services deployed in non clinical areas.Lack of essential palliative care medicines in the hospitals.
A REALIST LITERATURE REVIEW OF TRANSITION TO ADULT SERVICES BY YOUNG PEOPLE WITH LIFE-LIMITING CONDITIONS IN IRELAND
Authors: Kerr Helen , O'Halloran Peter , Nicholl Honor , Price Jayne 
Published: February 2014

BackgroundAs a result of improvements in care and treatment more young people with life-limiting conditions are now living beyond childhood, meaning they must make the transition from children's to adult services. The loss of long-standing relationships with providers of children's services combines with poor co-ordination of services to make this a daunting prospect for young people and their families. However, there is little evidence on transition services for young people with life limiting conditions, with few models of good practice in the literature.AimsThe purpose of this review was to determine the factors that promote or hinder the transition to adult services for young adults with life limiting conditions, and identify gaps to be addressed.MethodsA comprehensive search of the literature was undertaken using key terms, of the following databases; MEDLINE and the Cochrane Database of Systematic Reviews. 314 articles were sourced and inclusion and exclusion criteria were applied to highlight the most relevant literature.ResultsStudies were reviewed using a realist review approach and three themes emerged from the literature. Barriers and facilitators to the transition process were identified associated with: 1. The patient 2. Parents/carers 3. The organisation.ConclusionIt is unclear from the literature what the specific factors are that promote or hinder the transition process for young adults with life limiting conditions who go through the transition from children's to adult services, therefore, research is required to identify the factors that promote and hinder the transition process in Ireland. This research is currently being carried out by the author as part of Doctoral studies. The three year full time Doctoral study commenced in January 2013 and is funded by the All Ireland Institute of Hospice and Palliative Care.
INVOLVEMENT OF THE TRADITIONAL MEDICINE PRACTITIONERS AND THE RURAL COMMUNITIES IN PALLIATIVE CARE PROVISION TO THE TERMINALLY ILL PEOPLE
Authors: Njama Martha 
Published: February 2014

IssuesGone are the days when palliative care was known for cancer patients only. Today, the need for palliative care is on the rise due to the increasing number of terminally ill cases from other diseases; communicable and non communicable. The challenges of brain drain and work overload for nurses. With this kind of scenario, we must not ignore or underestimate the role of the Traditional Medicine Practitioners as they are known to be the community primary health care providers, community members and the spiritual care providers. Distance to the palliative care centres and hospices in the rural areas is a barrier.DescriptionPrometra Kenya has supported Traditional Medicine Practitioners and the community members with trainings aimed at building skills to improve care planning, counselling, communication, delivery of care to improve the quality of life for those with chronic diseases or life-limiting illness and protection from being infected. After the first group was trained, they are now trainers of other community members.Lessons LearnedTraditional Medicine Practitioners are respected by their communities and even the terminally ill patients feel free to discuss secret issues with them. The family members are more productive because they utilize the time that would have been used for hospice or center visits to do their work. TMPs and community members can handle patients with little supervision. The model is cost effective.ConclusionsUse of community model has proved to be a success in the rural areas. It has also brought knowledge to the TMPs and the communities. Rural communities are uniquely positioned to meet the challenges of providing palliative care through collaborative efforts. The communities need to be encouraged on the skills building trainings.RecommendationsMore support is needed to facilitate more training to the Traditional Medicine Practitioners and the communities. Incentives to encourage community trainings.
SURVEY OF PATIENT SATISFACTION WITH MEDICAL CARE ON A HOSPICE INPATIENT UNIT
Authors: Lucraft Helen , McNamara Paul 
Published: February 2014

BackgroundUnlike our previous inpatient surveys, we focussed solely on the medical input. Our medical Clinical improvement volunteer, an experienced clinician, carried out this project.AimsTo survey 40 inpatients on their experience of our medical input.From Aug '12-Feb'13, forty inpatients completed the questionnaire. 5 of the 10 questions (asterisked*) were benchmarked against national comparators. This benchmarking was undertaken by the Centre for Health Service Research, University of Kent, in 2004/5 and 2008/9.Q1. How soon after arrival did the doctor see you? Q2. Was the doctor polite and courteous?* Q3. Did the doctor understand your priorities and concerns?* Q4. Were you able to ask the doctors questions when you wanted?* Q5. Did the doctors explain what they thought was happening?* Q6. Are the doctors available to see your family? Q7. How would you rate your medical care?* Q8. Any aspect of your medical care you are unhappy with? Q9. If you could change one thing in your medical care? Q10. Any comments or suggestions for the doctors?ResultsIn the five questions which were nationally benchmarked, (asterisked*), our results compared favourably, exceeding them in each case. Qs 1&6 also scored highly.The final three questions, asking patients to critique their medical input, only provided limited suggestions. This made us wonder if it is difficult to make critical comments; however this was done with a volunteer, not a staff member.Patient concerns expressed were calls for consistent daily medical review and patient anxieties around discharge home.ConclusionsWe were heartened that inpatients felt overwhelmingly positive with their medical care. We have responded to the comment about consistent review and we aim to repeat the survey in eighteen months.
UNKNOWN PRIMARY INVESTIGATION SERVICE EVALUATION
Authors: Hazra Madhubrata , McGregor Mary , Brooks David 
Published: February 2014

BackgroundIn July 2010, NICE developed the guidelines for the diagnosis and management of Metastatic Malignant disease of Unknown Primary (MUO). At Chesterfield Royal Hospital (CRH) the Primary Investigation Service is lead by the Palliative Care team. It started in 2010 with the aim of investigating and supporting patients with MUO early and appropriately without unnecessary investigations or delays. Patients are referred as both in and out patients and discussed in an Unknown Primary MDT.AimThe aim of this evaluation is to review service development progress.MethodData were collected prospectively and compared over the last two financial years.Results87 patients were referred to the service in the last financial year, a 14% increase on the previous year. 7 patients were excluded as referrals were inappropriate. 55 patients were referred within 5 days of identification of MUO, 25 were referred after >5 days. Median time before inpatient referral was 4 days, for outpatients it was 8 days. 50% of patients had a performance status of 2 or greater at the time of referral.Median time from referral to diagnosis was 10 days, (6 days for inpatients, 13 days for outpatients.) The median time from referral to definitive treatment decision was 15 days. Just over a third of patients had Oncological treatment, with 60% having chemotherapy and less than 40% radiotherapy as the initial mode of treatment.Across both years the median survival from diagnosis was approximately four months, in the last year over a third died within a month.ConclusionThis audit clearly highlights the fact that though it is a relatively new service in this hospital it is now well established and has gained wide acceptance. These patients have a very poor prognosis and Specialist Palliative Care involvement from the beginning was appropriate.
ELECTRONIC PATIENT RECORDS MUST TALK TO AN ELECTRONIC PALLIATIVE CARE COORDINATION SYSTEM (EPACCS) FOR EFFECTIVE ADVANCE CARE PLANNING (ACP)
Authors: Cawley Declan , Marshall Jane 
Published: February 2014

BackgroundAdvance Care Planning (ACP) is integral in facilitating end of life care (EOLC) preferences for patients. Evidence suggests that patients would prefer to die at home but recognise “the practical and emotional difficulties of exercising this choice”. Whatever the cause of death, patients may experience symptoms so drugs should be prescribed pre-emptively and available in the patient's home. Patient records need to have documentation supporting the preference(s) for death (PPOD), CPR status and available drugs for administration within the home but professionals need this information as suggested by having an electronic palliative care coordination system (EPaCCS).AimTo standardise the components of ACPs within an electronic patient record to facilitate effective data transfer to an EPaCCS.MethodBaseline review of electronic patient records within a hospice setting, identifying components of ACPs and comparing what components are transferred to the EPaCCS.Results30 electronic patient records were randomly identified: the majority (73%) of patients had a cancer diagnosis (22/30), median age of 68 years. Interestingly 97% (29/30) of patients had reference to discussions about PPOD. 47% (14/30) had a documented preference for home, 23% (7/30) initially didn't want to discuss with only one (1/30) person on initial meeting having a preference for hospice. 13% (4/30) had documented changes in their PPOD. Within our local EPaCCS, only 37% (11/30) of patients were registered on this system; 55% (6/11) had their PPOD documented with the remainder (5/11) having had a recorded PPOD in their electronic patient record.ConclusionsDocumentation supporting the components of ACPs: PPOD, CPR status, pre-emptive drugs, is fundamental in facilitating the majority of individuals to die in their PPOD of home. However if data systems don't cross talk to each other, in a ‘push/pull’ system of data transfer, the success of implementing a loco-regional EPaCCS is questionable.
MEETING PALLIATIVE CARE NEEDS AT THE END OF LIFE IN PATIENTS WITH INTERSTITIAL LUNG DISEASE
Authors: George Mariam , Sharma Anisha , Powell Barbara , Bronnert Rosie 
Published: February 2014

BackgroundBritish Thoracic Society (BTS 2008) and NICE (2013) Guidelines recommend integration of Palliative care with local services to enable access to best supportive care from diagnosis till death. In October 2012, a retrospective survey of medical records in the hospital trust evaluated palliative care needs and input of Specialist Palliative Care Team (SPCT) for patients with Interstitial Lung Disease (ILD). Subsequently, a pathway was developed to promote timely referral to the SPCT.AimTo conduct an audit on current practice of palliative care management of hospital ILD patients approaching end of life against NICE, BTS and National End of Life care Strategy guidelines.MethodA three month (April-June 2013) retrospective audit of all in-patient deaths in a single tertiary cardio-respiratory hospital (415 bed capacity). Details of palliative care referrals and the management of such patients by the primary teams with emphasis on end of life pathways were reviewed.ResultsFifty-two patients with diagnosis of ILD were admitted in the said period. Of the 10 patients who had died in this period, 8 had accessible medical records. 62% (5/8) patients had a referral made to the Specialist Palliative Care team. 60% (3/5) were for complex symptom control and 40% (2/5) for consideration for hospice transfer. Breathlessness, cough, fatigue, anxiety and depression were the common symptoms that required management. Six of the eight patients had their prognosis discussed –5/6 by the primary medical team and one by the SPCT. Preferred place of death was discussed and achieved in 80% (4/5) patients seen by the SPCT. DNACPR form was completed in 75% (6/8) patients.ConclusionThough good support exists for ILD patients in a tertiary care setting, there remains the scope for improvement through recognition of the services provided by the Specialist Palliative Care Team and more focused end of life care for such patients.
RESULTS OF A CONTROLLED EVALUATION OF A HOSPICE RAPID RESPONSE COMMUNITY SERVICE FOR END OF LIFE CARE
Authors: Butler Claire , Holdsworth Laura , Gage Heather , Coulton Simon , King Annette 
Published: February 2014

BackgroundWhen faced with a life-limiting condition, most people would prefer to die at home but more than half continue to die in hospital. A 2011 systematic review concluded that there is only moderate evidence to show that home-based end of life teams reduce the likelihood of dying in hospital, though observational and descriptive studies suggest that home-based care with the capacity to respond rapidly to crises may improve the likelihood of dying at home.AimsThe primary aim of the study was to assess the impact of a new rapid response service (in addition to usual hospice and community palliative care services) on patients dying in their preferred place of death (PPD). Secondary objectives were to evaluate carers' quality of life and the overall cost of providing end of life care.MethodsIntervention:Hands-on care provided by trained Healthcare Assistants available day and night at 4 hours notice to support patients dying at home.Design:Quasi-experimental, multi-centred, controlled evaluation with embedded cost analysis.Results953 patients died with a PPD recorded and 155 carers completed questionnaires.The number of people achieving their PPD was not statistically significantly different in the intervention and control groups (about 60%). Patients in the intervention group were more likely to wish to die at home and significantly more patients in the intervention group died at home.The carers of patients in the intervention group experienced more problems with their mental and emotional health than those in the control group.The rapid response service did not significantly add to the costs of providing end of life care in the intervention group compared to the control group.ConclusionsAccess to the rapid response service did not significantly affect whether patients died where they preferred.