bluuebunny/crossref_metadata_2025_split huggingface dataset:
FROM NFR TO AND: A POSITIVE APPROACH TO END OF LIFE CARE DISCUSSIONS
Authors: Frost J , Campbell K 
Published: April 2013

BackgroundWe identified problems with paediatric end-of-life discussions, including language, content and location of documentation and information sharing with paramedics.AimTo improve communication between clinical staff and between clinical staff and families about end of life care choices.MethodsWe developed and implemented a novel approach: the Allow a Natural Death Policy and form. We collaborated with the NSW Ambulance Service to develop a system to communicate care choices to paramedics.ResultsWe audited the medical records of 43 children who died at CHW January–September, 2011. The results were:15 (35%) did not have any information about end of life care choices28 (65%) had end of life care choices documentedWhere no End of Life Care choices were documented:10 (66%) were Coroners cases8 (53%) had an admission of ≤1 day8 (53%) died in PICU6 (40%) died in Emergency Department1 (7%) died in an inpatient wardCompliance with completing the AND was high, with the following sections completed 100%:Patient ID stickerFACS informationInterpreter informationGoals of careResponse sectionStanding order sectionMedical Officer detailsParamedic data is yet to be audited.DiscussionThis project was well received by clinicians, paramedics and families. The audit demonstrated successful implementation.ConclusionFocussing on the positive choices for care, rather than the withdrawal of care, has made difficult discussions easier and junior staff clear guidelines.
COMMUNICATION AND COORDINATION DURING TRANSITION OF OLDER PERSONS BETWEEN NURSING HOMES AND HOSPITAL STILL IN NEED OF IMPROVEMENT
Authors: Kirsebom M 
Published: April 2013

BackgroundIt has previously been reported that transfers to hospital from nursing homes and discharge of patients from hospital are surrounded by communication difficulties. However, studies focusing on both hospital and nursing home registered nurses' experiences of communication and coordination within and between nursing homes and hospitals are uncommon.AimTo investigate registered hospital and nursing home nurses' experiences of coordination and communication within and between care settings when older persons are transferred from nursing homes to hospital andvice versa.MethodsIn 2008, three focus group discussions were conducted with registered nurses from hospitals and nursing homes (n=20). Data were analysed using content analysis.ResultsNursing home registered nurses found it difficult to decide whether or not the older person should be referred to hospital from the nursing home. Hospital registered nurses reported often trying to stop premature discharges or having to carry out the discharge although it had not been fully prepared. Both hospital and nursing home registered nurses suggested increased collaboration to understand each other´s work situation better.ConclusionCommunication and coordination among hospital and nursing home registered nurses need to be furthered improved. Registered nurses' coordination and planning in the nursing home are extremely important to future elder care. We recommend that the medical care plan be regularly updated and meticulously followed, the aim being to reduce the risk of inappropriate medical treatment and nursing care as well as unnecessary transfer and admission to hospital.
INFORMED CONSENT IN ADVANCE CARE PLANNING IN THE PALLIATIVE CARE SETTING: A DECISION AID LIBRARY FOR END OF LIFE CARE
Authors: Krones T , Loupatatzis B , Steffen-Bürgli B , Otto D , Brunner M , Biller-Andorno N , Eisele G , in der Schmitten J , Mitchell C , Obrist S , Poster D , Rordorf T , Schad K , Spirig R , Volandes A , Zaugg K , Zimmerli L 
Published: April 2013

BackgroundAdvance care planning has been discussed from a variety of perspectives. It aims to support a patient-centred process in which patients, together with their loved ones and their caregivers, are enabled to make informed decisions regarding future health care events. Although both accurate information about prospective health care problems and alternatives and help with personal decision making by advance care planning facilitators are crucial, the information given to patients in an ACP process is mostly rough, short, and left to physicians and thus does not fulfil the criteria of an ‘evidence based patient choice' nor even of general standards for “informed consent”AimTo construct an evidence based paper and video-based Decision Aid Library for End of Life Care for best patient information supporting the ACP facilitation processMethodsWe screened the literature for evidence-based information and evidence-based decision aids regarding (1) general Goals of Care, (2) Resuscitation (3) Tube Feeding (4) Antibiotics, (5) Ventilation (6) Dialysis Withdrawal and (7) last place of Care and constructed a library of evidence-based decision aids, qualitatively pretested by staff and patients.ResultsFollowing a methodical screening process, a library of evidence-based papers and videos was constructed, which is currently being qualitatively evaluated by staff and patients as the first step in a grant-funded randomised controlled trial on the effect on ACP for palliative care patients in Switzerland.DiscussionWe will discuss the content and qualitative results of the Decision Aid Library at the Melbourne ConferenceConclusionFrom an ethical point of view, best information is crucial for making informed choices. If the decision aid library proves to be useful, evidence-based information and decisions aids should become part of ACP programmes.
ADVANCE CARE PLANNING AND PALLIATIVE CARE IN CHRONIC DISEASE SYMPTOM MANAGEMENT
Authors: Kubokawa N , Nishikawa M , Yokoe Y , Fukuda K , Hattori H , Yong-Jae H , Miura H , Endo H , Nakashima K 
Published: April 2013

BackgroundOpioids are important in symptom management of dyspnoea in chronic diseases, for example, chronic obstructive pulmonary disease (COPD). Existing literature indicates that in the absence of advance care planning (ACP) for end-of-life decisions, we should consider whether concomitant opioid use is appropriate. In Japan, the appropriate timing of ACP for dyspnoea symptom management in chronic diseases is poorly understood.AimThe primary aim was to clarify whether ACP should be performed by the palliative care (PC) team concomitantly with morphine administration. The secondary aim was to clarify the opinion of home care support physicians on concomitant use of opioids and ACP.MethodsWe investigated the level of ACP conducted by PC teams among patients who were using opioids. We conducted an inventory survey on the concomitant use of morphine and ACP among 220 doctors, including 147 home care support physicians.ResultsACP was conducted by PC teams for all patients who were using opioids. PC team members agreed to concomitantly perform ACP and opioid administration for dyspnoea in diseases such as COPD, 137 (62.3%) among 220 doctors, including 147 home care support physicians were agreed to.DiscussionIn comparison with PC team members, the ratio of home care support physicians who advocated ACP concomitantly with morphine for dyspnoea was low.ConclusionThis study clarified the opinions of home care support physicians and PC team members on the concomitant use of opioids and ACP.
NATIONAL ASSESSMENT OF LIVING WILLS AND DO NOT RESUSCITATE ORDERS
Authors: Mirarchi F L , Costello E , Puller J , Cooney T , Kottkamp N , Markley M J 
Published: April 2013

BackgroundConcern exists that living wills are misinterpreted and may result in compromised patient safety.AimTo determine whether adding code status to a living will improves understanding and treatment decisions.MethodsAn Internet survey was conducted of General Surgery and Family, Internal and Emergency Medicine residencies between May and December 2009. The survey posed a fictitious living will with and without additional clarification in the form of code status. An emergent patient care scenario was then presented that included medical history and signs/symptoms. Respondents were asked to assign a code status and choose appropriate intervention. Questions were formatted as dichotomous responses. Correct response rate was based on legal statute. Significance of changes in response due to the addition of either clinical context or code status was assessed by contingency table analysis.Results768 faculty and residents at accredited training centres in 34 states responded. At baseline, 22% denoted ‘full code’ as the code status for a typical living will and 36% equated “full care” with a code status DNR. Adding clinical context improved correct responses by 21%. Specifying code status further improved correct interpretation from 28% to 34%. Treatment decisions were either improved 12–17% by adding code status (‘Full Code,’ ‘Hospice Care’) or worsened 22% (‘DNR’).DiscussionFurther research is required to ensure safety, understanding, and appropriate care to patients.ConclusionMisunderstanding of advance directives is a nationwide problem. Addition of code status may help to resolve the problem.
CAN ADVANCE CARE PLANNING BECOME PART OF USUAL COMMUNITY PALLIATIVE CARE? USING A MULTI-SITE ACTION RESEARCH APPROACH TO IDENTIFY CONDITIONS FOR SUCCESS
Authors: Blackford J , Street A F 
Published: April 2013

BackgroundInternationally the recommended system-wide approach to ACP has been successful in health care settings and communities with a homogenous population. A multi-faceted ACP was developed, trialled and evaluated in diverse Australian community palliative care services.AimTo identify the conditions for successful integration of ACP into Australian community palliative care services.MethodsUsing a multi-site action research approach data collected between 2008 and 2010 included medical record audit; document analysis; key individual health professional interviews (22); six clinician focus group interviews (38).ResultsNine Australian community palliative care services participated; two sites later withdrew. The services differed in geographic location, staff profile, client and family demographics and services offered. The conditions for success were determined by an interconnected construction of supportive relationships between government (including National, State and local government authorities), health care organisations who manage the community service, and the microcosm of community palliative care practice. The specific conditions identified related to policy, financial resources, size of the service, and staffing profile, documentation processes, and geographic context.DiscussionNationally a consistent ACP policy environment alongside a supportive economic health care climate is required if ACP is to be routinised into health care services.ConclusionIndividual clinicians or small community services may demonstrate short-term success in ACP but long-term it is contingent on conditions of stable health care infrastructure, supportive national policy adequate funding and stable workforce.
MEASURING AND IMPROVING COMMUNICATION ABOUT PALLIATIVE AND END-OF-LIFE CARE
Authors: Randall Curtis J 
Published: April 2013

Description and Learning ObjectivesThere are major challenges confronting clinicians, researchers, and policy-makers regarding improving communication about palliative and end-of-life care with patients and families. There is also mounting evidence that the intensity of care at the end-of-life is increasing, despite the fact that most patients report they would prefer not to die in high-intensity medical settings. Recent research suggests that improved communication about palliative and end-of-life care is associated with reduced intensity of care at the end of life, improved quality of life for patients and families, improved quality of dying for patients, and reduced psychological symptoms for families. Yet, the most effective and cost-effective ways to achieve improved communication are not clear. One important step to improving communication is being able to reliably measure the quality of this communication. We will review recent studies identifying some successful methods to measure the quality of communication about palliative and end-of-life care and some interventions that have been documented to successfully improve these communication skills. We will also review preliminary results of a recently completed randomised trial of a communication skills building workshop for physicians and nurse practitioners using patient-level outcomes data to assess outcomes. Finally, we will discuss methods to help clinicians develop a personalised approach for conducting communication about palliative and end-of-life care in their own clinical practice.
END-OF-LIFE MEDICAL TREATMENT PREFERENCE DISCUSSIONS AND SURROGATE DECISION-MAKER APPOINTMENTS: EVIDENCE FROM ITALY, SPAIN, BELGIUM AND THE NETHERLANDS
Authors: Evans N , Pasman H R W , Vega Alonso T , Van den Block L , Miccinesi G , Van Casteren V , Donker G , Bertolissi S , Zurriaga O , Deliens L , Onwuteaka-Philipsen B ,   on behalf of EUROIMPACT
Published: April 2013

BackgroundMaking treatment decisions in anticipation of possible future incapacity is an important part of patient participation in end-of-life decision-making.AimTo compare the prevalence of GP-patient end-of-life treatment discussions and patient surrogate appointments in Italy, Spain, Belgium and the Netherlands and examine associated factors.MethodsA cross-sectional, retrospective survey was conducted with representative GP networks in four countries. GPs recorded the health and care characteristics in the last 3 months of life of patients who died non-suddenly. Prevalences were estimated and between country differences, and country-specific associated patient and care factors, were examined using logistic regressions.Results4396 non-sudden deaths were included. GP-patient discussion of treatment preferences occurred for 10%, 7%, 25% and 47% of Italian, Spanish, Belgian and of Dutch patients respectively. Furthermore, 6%, 5%, 16% and 29% of Italian, Spanish, Belgian and Dutch patients had a surrogate decision-maker. Despite some country-specific differences, previous GP-patient diagnosis discussions, more frequent GP contact, GP provision of palliative care, the importance of palliative care as a treatment aim and place of death were positively associated with preference discussions or surrogate appointments. A diagnosis of dementia was negatively associated with preference discussions and surrogate appointments. The single most important factor was prior GP-patient diagnosis discussion.DiscussionThe study revealed a higher prevalence of treatment preference discussions and surrogate appointments in the two northern European countries.ConclusionDelaying diagnosis discussions impedes anticipatory planning, whereas early discussions for all patients, particularly those with cognitive decline, and palliative care provision support patients' participation in decision-making.
PERSONAL VALUES PROFILING AND ADVANCE CARE PLANNING
Authors: Corke Charlie 
Published: April 2013

Many people find it difficult to think about dying and to refuse medical treatments. This makes Advance Care Planning a challenge. In contrast, thinking about values is much easier. Exploring values can reveal how consistent views are and can also provide a profile of values that can give insight to how the individual thinks about issues relating to death, debility, medical treatment and dependency. People have reacted positively to completing the Personal Values Profile. No negative feedback has been received. Several users have commented that the survey was confronting but important. Many stated that they planned to share the Personal Values Profile report with their family and doctors. This is very encouraging as this may Personal Values Profiling has been tested in a Best-Worst Scoring System involving over 1000 people aged 55 and over. This reveals that only a small minority of people have values that support the medical default position (ie, to do whatever possible to save life, whatever the burden of treatment and however poor the outcome may be). The Personal Values Profile results have been analysed for clustering of values within the individual responses. This reveals 3 distinct groups:Group 1(7%) believe in extending life no matter what the consequencesGroup 2(32%) view quality of life as important but are willing to accept some limitationsGroup 3(61%) view quality of life as paramount and would rather die than accept limitationsSub-analysis of responses by patients aged over 80 reveals that Group 3 are even more highly represented in this group. Group 1 remains at 7% so the increase is due to older individuals ceasing to accept limitations so moving from Group 2 to Group 3.The finding that the majority opinion (Group 3) takes the view that there are situations that are worse than death is of great import and suggests that the medical default (to save life at any cost) fails a large proportion of patients. This finding also suggests that Advance Care Planning is required for a large proportion of the population. The utility of Personal Values Profile report to directly assist medical decision making, or to facilitate formal Advance Care Planning, remains to be demonstrated.
‘I AM SO ANGRY AND FRIGHTENED TO BE AT THIS STAGE OF MY LIFE’: OBSERVATIONS OF GRIEF AND LOSS IN COMMUNITY ADVANCE CARE PLANNING GROUP EDUCATION
Authors: Crowe L , Boddy J , Chenoweth L 
Published: April 2013

BackgroundThe ACP literature has a paucity of information in relation to the loss and grief experiences for people when contemplating engagement in ACP. Without this information engagement of certain populations and resolution of barriers to ACP may be difficult to overcome.AimTo explore the incidence and themes of loss and grief that were shared within the context of ACP education workshops.MethodsA qualitative approach was used with participant observation and reflective journaling to record events within the implementation of ACP workshops. Thematic analysis was then employed to identify the various themes and frequency of loss and grief issues disclosed within the workshops.ResultsThere were two to three significant loss and grief statements made or disclosures of personal losses in each workshop. Loss and grief themes included fear of death, loneliness, suffering and vulnerability. Grief experiences included watching loved ones be palliated or die in a way that did not match personal values.DiscussionLoss and grief for older people outside the context of bereavement is under researched. Despite recognition of depression in the elderly there is scarcity in the literature of general grief and loss experiences and how this may impact the engagement and participation in ACP training. There are both historical and sociological grief and loss issues for this generation which require exploration for successful engagement in ACP planning.ConclusionParticipants had many fears related to previous loss experiences and misconceptions of the ACP process. Disclosures resulted in increased participation in the group and greater understanding of the benefits of the ACP process.
ADVANCE CARE PLANNING IN PRIMARY CARE IN THE EAST OF ENGLAND: PUTTING GUIDANCE INTO PRACTICE?
Authors: Hayhoe B , Howe A 
Published: April 2013

BackgroundAdvance care planning (ACP) continues to gain importance in UK healthcare, with definition in statute in the Mental Capacity Act 2005 and professional guidance advocating its use in primary care. However, the impact on clinical practice is unclear.AimThis qualitative study investigates ACP in UK primary care, establishing current experience, ideas and views on ACP, and identifying the extent to which guidance is embedded in practice.MethodFifteen General Practitioners and four Old Age Psychiatrists took part in semi-structured interviews. Themes arising were discussed in a lay focus group, before a questionnaire survey of 140 primary care practices tested findings in detail.ResultsMany primary care physicians remain unfamiliar with guidance on ACP and lack experience in its use. However, while they feel a need for support and training, practitioners are well aware of barriers to ACP as well as potential ethical problems, and can provide relevant suggestions for improvement. Agreeing with lay people that primary care has a key role in this process, professionals express strong commitment to make more use of ACP, ensuring patients' wishes are recorded and respected.DiscussionPrimary care is an ideal environment to build on conceptual understanding of ACP, translating evidence, policy and guidance into practice.ConclusionPrimary care professionals show keen interest and openness to ideas regarding ACP. These findings provide novel insight into understanding and use of ACP in primary care, with potential to facilitate development of practical strategies to enhance implementation of quality, patient centred ACP in this setting.
‘GOING FOR GOLD’: ACHIEVING TOP QUALITY END OF LIFE CARE IN GP PRACTICES AND MAINSTREAMING ADVANCE CARE PLANNING (ACP) DISCUSSIONS: FINDINGS FROM THE FIRST GP PRACTICES TO BE GSF ACCREDITED
Authors: Thomas K , Armstrong-Wilson J 
Published: April 2013

BackgroundPrimary care is pivotal to good end-of-life care and the routine introduction of ACP discussions, though uptake is variable. In the UK most GP practices use Foundation Level GSF that is, have a Palliative Care Register and meetings, but only 25% were included on the register and ACP use was low(NPCA 2011). Further training (GSF Going for Gold ) in over 300 practices showed early improvements, but further evaluation was required.AimTo evaluate the progress of the first seven GP practices to undertake GSF Going for Gold training and GSF Accreditation with the Quality Hallmark Award, endorsed by the Royal College of GPs.MethodsAccreditation included 10 key metrics, a portfolio with good practice examples, After Death Analysis Audit and a follow up conference call. Comparative benchmarked analysis was undertaken with the data and the Accreditation panel assessed the findings.ResultsThere was significant improvement in numbers included on the register, non-cancer and care home patients, increase in uptake of ACP and DNAR discussions, development of practice protocol for sustainability and other benefits following the Going for Gold training.DiscussionBy earlier identification, use of registers and routinely offering ACP discussions, more were enabled to communicate their views and preferences and early results indicated more dying at home.ConclusionThrough whole-team involvement, culture change and routine systemisation of end-of-life care, significant improvements were made in these practices, with uptake of ACP discussion increasing. Additional benefits included improved confidence and development of a sustainable plan.