bluuebunny/crossref_metadata_2025_split huggingface dataset:
How ePOLST will improve shared, informed medical decision-making: applying the eMOLST experience in New York
Authors: Bomba P. 
Published: May 2012

The Physician Orders for Life-Sustaining Treatment (POLST) Paradigm Program is designed to improve the quality of care seriously ill patients receive at the end of life. The process results in documentation of medical orders on a brightly colored form that health care professionals must follow. POLST is a standardized community-wide form that transitions with patients across all care settings. Medical Orders for Life-Sustaining Treatment (MOLST) is New York State's approved POLST Paradigm Program.The electronic Medical Orders for Life-Sustaining Treatment (eMOLST) is a secure web-based application that assists providers in having the MOLST discussion, documenting the clinical steps and fulfilling legal requirements under New York State Public Health Law.eMOLST improves quality outcomes and meets the six aims of the Institute of Medicine's Crossing the Quality Chasm, as it is safe, effective, patient-centered, timely, efficient and equitable:▶Safe- built-in quality controls for correct orders; does not allow for inconsistent medical orders▶Effective- enables providers to follow clinical steps and meet legal requirements▶Patient-centered- goals for care guide choice of interventions▶Timely- web-based; assures accessibility across care transitions, including documentation of discussion▶Efficient- more time for discussion; less time for documentation, while ensuring accuracy▶Equitable-integrates needs of adults, minors, developmentally disabled who lack medical decision-making capacity; can be used in all clinical care settings
Where are we going (or where do we need to go) with Advance Care Planning?
Authors: in der Schmitten J , Marckmann G 
Published: May 2012

Introduction: Since regional advance care planning (ACP) programs have demonstrated effects that to many seemed impossible until recently, widespread implementation into regular care is a matter of time. But where are we heading for, and how can we get there?Methods: Review of the literature and analysis of experiences with a German ACP program.Results: ACP is a powerful concept to strengthen patients' autonomous choices in situations of severe illness. As ACP requires a change in decision making culture, it cannot be decreed – it needs to be implemented in an evolutionary regional process, involving the community and relevant health care institutions. Most countries will need to see thriving ACP pilots before nation-wide programs can be launched. However, barriers and pitfalls have to be considered. Realizing patient autonomy is not embraced by all, some worry that ACP will pave the way for active euthanasia, and many fear a hidden health-economic rationale. In order for an ACP program to become a sustained success, the resulting care plans must prove to be both relevant (i.e., making a difference) and valid (i.e., congruent with the person's true intention). Relevance and validity of advance care plans, however, are primarily a function of skillful facilitation. Besides transparency of economic incentives, research and implementation policies should concentrate on facilitator qualification, standards of the facilitation process, and assessments warranting that advance care plans are relevant and valid.Conclusion: In the long run, ACP programs will stand or fall with the proven quality of the implemented professional facilitation process.
The five year plan: implementing comprehensive advance care planning in a large health system
Authors: Schellinger S 
Published: May 2012

The patient self-determination act was effective in lifting advance directives (AD) as a recognised and accepted tool to document treatment wishes but did little to increase the completion of AD (29% Americans complete AD), ensure wishes are honoured or ensure an AD is available to assist in decision making. Success in honouring wishes is possible if there is commitment to:Endorse standards which support infrastructure and processes to introduce and encourage advance care planning (ACP).Build systems to document wishes, store/retrieve AD, and referral mechanism to access resources.Educate, train and provide access to staff for facilitating three levels of ACP (basic, complex, POLST).Develop patient education materials and engagement strategies to promote ACP completion.Adopt policies, ongoing quality and process improvement strategies to identify gaps in the systems to honour wishes.A large Midwest health system has been successful in maintaining these five ACP commitments over a five year period as demonstrated by:Ten thousand clinicians and volunteers completing ACP education and training (new employee orientation standard).Prevalence AD in the medical record for those discharged alive and dead (16% vs. 38%, 15% vs. 30%).Completing 16,313 facilitated ACP discussions by trained staff with completed health care directives, disease specific statement of treatment preferences or POLST (provider order for life sustaining treatments).Increasing access to ACP resources (400 to1200 ACP referrals/month).Centrally locating ACP documentation across settings.Establishing ACP reimbursement.System wide accountability of ACP.
POLST forms within an acute care setting
Authors: Fullam R , Detering K , Silvester W 
Published: May 2012

There are only a limited number of studies on the content and completion of Physician Orders for Life Sustaining Treatment (POLST) forms. No study has specifically examined the use of POLST forms within an acute hospital setting. We audited 1096 randomly selected Resuscitation Plans, a locally developed form of POLST, completed in a university hospital during 2011. Matching patient identification numbers resulted in 789 individual patients (49.7% Male; 64% aged 75+), of whom 187 had multiple plans during the audit period. The most recent plan for each patient was examined for content. Plans were most commonly completed by Registrars (539, 68.3%), and 99.7% of plans were signed. The majority of plans indicated orders for treatment limitation (608, 77.1%), and these patients were significantly older than patients with an order for full treatment (p=.001). Information on the decision making process was completed in 540 cases (68.4%). Of these, 63% had evidence that the patient/family had been involved in, or were informed of the decision. There was a significant association between limitation of treatment and evidence of family/patient involvement in the decision making process (p=.001). Forty-nine percent of patients with multiple plans had orders in the most recent plan for less-aggressive treatment, compared to the prior plan. A further 44% had no changes to treatment orders over consecutive plans.The use of POLST forms in an acute care environment is dynamic and complex. Evidence of patient/family involvement in the decision making process should increase as local advance care planning programs progress.
Defining end of life care in one of Australia's busiest hospitals.
Authors: Mitropoulos J. , Le B. 
Published: May 2012

Despite evidence illustrating the importance and benefits of Advance Care Planning (ACP), and sustained efforts to promote its use and uptake, the use of documented ACP in patients presenting to hospital at or near end-of-life (EOL) remains low. The Royal Melbourne Hospital (RMH) has the largest number of admissions and separations of any other Australian hospital. Consecutive deaths occurring at the RMH from June 1st2011 (n=90) were retrospectively reviewed to assess the preparedness of patients and carers for end-of-life care, specifically looking at ACP documentation and Limitation of Medical Treatment (LMT) orders. In this population of patients, only 3 patients presenting to hospital, who went on to die during that admission, had a documented ACP. During the final admission, there was a high incidence of documented LMT orders, (present in 80% of deaths). However in 15.28% of such instances, the LMT order was enacted following a “Code Blue” and/or Medical Emergency Team call, which raises questions about timeliness of discussions with patients and carers about clinical decision-making and EOL issues. Further data to be presented includes time taken from admission to LMT order (mean 4.89 days), quality of dying after defined LMT orders and the rates of consultation with Palliative Care (41.11% of cases). The results of this study highlight the ongoing need to promote appropriate early ACP discussions to guide EOL decision-making. The results of this study are to inform the basis of a new hospital wide initiative to promote and guide clinician-led ACP discussions.Treatment orders documented in each patient's most recent Resuscitation PlanNumber of patientsFull treatment181 (22.9%)Not for CPR but is for intubation25 (3.2%)Not for CPR or intubation (is for non invasive ventilation)154 (19.5%)Not for CPR, intubation or ventilation306 (38.8%)Palliative care123 (15.6%)
Measuring benefits at end of life for economic evaluation: measure development and a ‘thinkaloud’ study
Authors: Coast J. , Sutton E. , Orlando R. , Armour K. 
Published: May 2012

IntroductionNICE uses economic evaluation to determine which interventions (including symptom control) provide most benefit for the resources used. Current health-gain measures for economic analysis may miss important benefits of holistic end of life care and these interventions may not be prioritised.Aims and MethodsTo develop and evaluate a new measure for economic evaluation of end of life care. In-depth interviews with 23 informants at different stages along the dying trajectory (general population, residential care, palliative care) explored what informants felt was important about end of life care, dying and death. Constant comparison was used to develop conceptual attributes; repeat interviews with 12 informants checked these attributes and generated wording for the measure. Interviews with patients (n=35), family members or carers (n=20) and health professionals (n=20) will use the ‘thinkaloud’ technique to study the measure's feasibility and validity.ResultsSeven attributes emerged based on what people felt was important to them: autonomy, love, physical suffering, emotional suffering, dignity, support and preparation. These provide the basis for seven questions in a simple measure expressed in terms of capability, each with four levels. Thinkaloud interviews will provide important information about who could complete the measure, and an understanding of why differences occur when measures are completed by different groups.ConclusionRigorous methods have been used to develop a measure for use in economic evaluation that will more accurately reflect benefits of end of life care. Validation is ongoing.
The Responsive Needs Tool – unlocking communication of end of life care needs.
Authors: Ball B. , Johnson B. , Bake J. 
Published: May 2012

IntroductionThe Lincolnshire Home Deaths Project Group brought together organisations from across the county to develop new ways of working that were patient focussed and to ensure that end of life services dovetailed. This included a night care pilot which identified the need for an assessment and communication tool endorsed by the health and social care community to enable the needs led prioritisation of resource in end of life care.Aims and MethodsTo enable clear, accurate and effective communication of need across organisations to support the allocation and re-allocation of available night care resources for patients at the end of life based on their clinical need. The ‘responsive need’ tool was devised by members of the group using the work of two organisations, Marie Curie Cancer Care and St Barnabas Lincolnshire Hospice and the Gold Standards prognostic indicators as a resource.ResultsThe tool has become the common ‘currency’ of communication countywide and is incorporated into SystmOne palliative care template. It has enabled the provision of end of life care according to need, and stopped unmet need for complex patients in the pilot area. Given clinicians confidence that the care will be there when the patient needs it; releasing care and supporting new ways of working.ConclusionThe responsive need tool has supported choice at the end of life for patients and would be of interest to both those commissioning and providing end of life care.
Parkinson's Disease Support Workers advise on symptom control
Authors: G. Kernohan W. , Waldron M. , Hasson F. , McLaughlin D. , Cochrane B. 
Published: May 2012

IntroductionThe symptoms of PD vary but with no cure, people with advanced disease experience distressing symptoms, such as motor complications, dementia, depression, pain and gastro intestinal symptoms which can be difficult to manage. There are many unmet needs such as lack of information, ad hoc delivery of services and a lack of preparation.Aims & MethodsTo investigate the palliative care needs of people with Parkinson's Disease as perceived by support workers. Semi structured interviews were undertaken with seven PDUK support workers. With permission interviews were audio recorded, transcribed and analysed using content analysis. Demographic variables were recorded.ResultsParticipants included two information and support workers, an information manager, a branch and voluntary support officer, a manager, a service development officer and an education and training officer who provide advice to people with PD. Seminars with nursing home staff and in-service GP training sessions are held to increase understanding of PD and its symptoms such as ‘freezing’. The participants stressed the importance of clients' PD medication timetable when in a hospital or nursing home settings. They also advocate for more nurse specialists and for early referral to therapists for clients to learn how to deal with symptoms and improve their quality of life.ConclusionPeople with PD can experience distressing symptoms both physically and psychologically. Increasing the knowledge and understanding of their health professionals regarding PD symptom control and medication effects within a palliative care approach would help alleviate their distress and increase their quality of life.
An evaluation of the use of traditional opioids and immediate-release fentanyl in the management of breakthrough cancer pain in an integrated cancer network
Authors: Nwosu A. , Marley K. , Sulaivany E. , Dickman A. , Littlewood C. 
Published: May 2012

IntroductionBreakthrough cancer pain (BTcP) is common and is associated with significant morbidity. Immediate release Fentanyl products are licensed for the management of BTcP; however, some practical concerns exist about their safety and routine use in clinical practice.Aims and MethodsTo identify the multi-disciplinary team (MDT) experience in managing BTcP in relation to APM guidance. To identify the MDT experience of using immediate-acting Fentanyl products in the management of breakthrough cancer pain. To develop new regional guidelines to help health professionals manage breakthrough cancer pain. A literature review informed the development of two audit surveys which examined the health professional's experience of: (i) Managing a patient with BTcP. (ii) Using immediate-acting Fentanyl products. Electronic surveys were distributed to multidisciplinary members of four integrated cancer networks during August 2011.ResultsTwenty-eight BTcP surveys and 29 Fentanyl products survey proformas were completed. BTcP was identified correctly in most instances (80.8% of individuals had their background cancer pain controlled). Oxynorm was the most popular short-acting opioid (32% of occasions); Abstral was the most popular immediate-release Fentanyl preparation across hospice, hospital and community settings. Most episodes of BTcP were relieved in 30 minutes (56%). Concerns about storage and disposal (45%), delay in accessing medicines (45%), prescribing issues (62%) and education of generalists (62%) were highlighted by respondents.ConclusionMost episodes of BTcP were correctly identified and in 56% of cases resolved within 30 minutes of receiving analgesia. Concerns around prescribing of immediate-acting Fentanyl products and the education of generalists were highlighted.
‘Battling on’ and ‘blinkered’: carer experiences of home based care at the end of life
Authors: Harrop E. , Byrne A. , Nelson A. 
Published: May 2012

IntroductionThe physical care needs of patients approaching the end of life are considerable and require specialist knowledge and skills amongst those who care for them. However, when hospice patients are discharged back home families often express concern as they receive no formal guidance on practicalities of physical care and instead adopt a ‘trial and error approach’ to palliative care. This is not only problematic for the patient but also impacts upon carer wellbeing.Aims and MethodsTo explore the experiences of carers and health professionals of end of life care provided in the home setting by informal carers. To explore views on the information and training needs of carers and how these might feasibly be addressed via interventions. Two focus groups with hospice based nurses and two groups with carers/former carers of patients at the hospice. Discussions explored experiences of, and views on, the challenges of providing care in the home setting, the information and training needs of carers, and possible interventions. Results: Thematic analysis of the data has indicated knowledge gaps and concerns amongst carers relating to practical care tasks and uncertainty over what support services are available and when and where to get help. The data also provides examples of how such concerns impact upon carer wellbeing and adaptation, and how carer and patient identities influence service use.ConclusionCarers experience a complex set of challenges, needs and barriers when providing end of life care, with implications for patient care, carer wellbeing and interventions which provide support to carers.
Palliative radiotherapy in addition to self-expanding metal stent for improving outcomes of dysphagia and survival in advanced oesophageal cancer: ROCS (Radiotherapy after Oesophageal Cancer Stenting) Study
Authors: Byrne A. , Adamson D. , Sivell S. , Griffiths G. , Crosby T. , Staffurth J. , Cohen D. , Blazeby J. , Fitzgibbon J. , Nelson A. 
Published: May 2012

IntroductionOesophageal cancer patients often experience dysphagia due to the blockage of the gullet by the tumour, resulting in severe restrictions on food intake, physical activity, social functioning and quality of life. One of the more effective treatments to improve swallowing is the insertion of a metal stent (SEMS), which then self expands to open up the gullet. The addition of radiotherapy may also help to improve the problems causes by dysphagia and provide an additional survival benefit.Aims and MethodsTo add radiotherapy to SEMS and examine the impact on: i) duration of improvement of swallow; ii) quality of life; iii) survival. A pragmatic, randomised controlled trial of external beam radiotherapy plus SEMS versus SEMS alone in 396 patients with oesophageal cancer. Radiotherapy will be given as an outpatient either as five treatments over one week, or ten treatments over two weeks. Questionnaires assessing quality of life and cost effectiveness will be completed at weeks two, four, eight and twelve and then monthly for up to one year. Semi-structured interviews will be held with: i) trial participants to explore their experiences while on the trial; ii) patients who decide not to take part in the trial to explore reasons for non-consent.ResultsThis trial will provide data on the time to progression of dysphagia, quality of life, morbidity and re-intervention rates, survival, patient attitude to treatment and cost-effectiveness of the treatment.ConclusionAchieving funding for large scale trials capable of answering important symptom control questions is feasible using a pragmatic approach.
Clinical Care Tracker: a new member of community Specialist Palliative Care team
Authors: Hayes J. , Nelson A. , Harry K. , Hayles L. , Byrne A. , Stephens K. 
Published: May 2012

IntroductionThe Clinical Care Tracker (CT) role has been established to enhance the quality and efficiency of services provided by the Community Specialist Palliative Care Team (CSPCT) at Marie Curie Hospice, Penarth. The CT is a Registered Nurse who works exclusively on the telephone, providing a point of contact for any patient or family on the CNS caseload and for clinicians and services involved in their care. The team implemented a traffic light system for stratifying the community specialist palliative care caseload and the ‘green’ patients are monitored by the CT.Aims & MethodsTo provide stable patients and their carers with regular contact, support or self-care information. To monitor for change in clinical status or indication of likely deterioration, prompting immediate increased input from CSPCT. For patients who are in crisis, the CT enables a rapid assessment of their needs and escalation to the relevant care to ensure the patients' needs are met. To supplement the face to face support provided by the CSPCT team. This is an innovative approach based on the Croydon model of a virtual ward in the community (Lewis, 2006) and the Department of Health model of a care tracker for chronic conditions (Player, 2007). Evaluation has been undertaken using a variety of sources including focus groups, observation, semi-structured interviews, impromptu interviews, attendance at weekly multi-disciplinary meeting and analysis of activity data.ResultsThe evaluation highlighted a risk that palliative care patients who are not receiving regular input from the Specialist Palliative Care CNS can get lost in the complex system of care. This is of particular relevance when they have a lower level of need, but are likely to deteriorate in the future. The Care Tracker offers a more appropriate way of stepping down the intensity of the support and giving the patient more choice about how much they engage with the service.ConclusionThe care tracker provides a way to monitor patients and enable the CNS team to intervene in a timely way if the patient deteriorates and their needs become more complex.
The prevalence of neurological disorders, including those of a palliative nature, in people aged 70 years and over in the Hai district of northern Tanzania
Authors: Dewhurst F. , Dewhurst M. J. , K. Gray W. , Howlett W. , Warren N. , Orega G. , Walker R. W. 
Published: May 2012

IntroductionThere are few data on neurological disorder prevalence from developing countries, particularly sub-Saharan Africa (SSA), and none specific to the elderly despite a need highlighted by the World Health Organisation.Aims and MethodsWe determined the prevalence of neurological disorders in those aged 70 years and over in a rural African community, described their sub-groups including those of a palliative nature, level of diagnosis and treatment and associated disability. We carried out an epidemiological survey in the Hai district demographic surveillance site (DSS) in northern Tanzania (n=161,119). 2232 participants (1/4 of the DSS 70+ population) were screened with a validated screening questionnaire with high sensitivity (87.8%) and specificity (94.9%). Positive responders underwent full neurological assessment to confirm or refute the presence of a neurological diagnosis.ResultsIn 2232 participants, there were 384 neurological diagnoses amongst 349 people. The age adjusted prevalence (cases/1000 population) of neurological diagnoses (95% confidence intervals (CI)) was 168.9/1000 (153.4 to 184.5). Palliative neurological disorders included Parkinson's disease, progressive supra-nuclear palsy and motor neuron disease. 14.6% had been correctly diagnosed and 10.6% were on appropriate treatment. Neurological disorders were associated with disability.ConclusionThis is the first community-based neurological disorder prevalence study specifically in the elderly in SSA. It reveals a high prevalence of neurological morbidity, low diagnosis and treatment levels and high associated disability and demonstrates the contribution neurological morbidity makes to the non-communicable disease epidemic.