bluuebunny/crossref_metadata_2025_split huggingface dataset:
The development of ACP in New Zealand: the roll the National ACP Cooperative
Authors: Manson L. , Snow B. , Grundy K. , Read T. , Rishworth S. , Leigh Moore Mary , Daltrey J. , Naish M. 
Published: May 2012

The development of ACP in New Zealand (NZ) has been driven by clinicians through the National ACP Cooperative (Cooperative). The effective development and deployment of ACP services in NZ requires a national effort to ensure that services are consistent and that they best meet the needs of all people. In the absence of a central government initiative, the Cooperative was formed by clinicians to facilitate this effort. The Cooperative is working to develop a common understanding, framework and direction for ACP in all areas of health. It now works with government and non-governmental agencies, particularly the Ministry of Health, to advance its aims and objectives within the current legal and ethical context in a manner that is coordinated, evidence-based and outcomes focussed. The Cooperative's goals include (1) full community engagement (public and private organisations, Non Government Organisations, networks and the general public) in the design and implementation of ACP; (2) to develop training for health care workers; (3) to grow and support a group of ACP-trained clinicians; (4) to create and control consistency in ACP documentation and to ensure a national mandate for universal documentation and policy development; (5) to influence research on issues related to ACP; and (6) to provide input into and impetus for IT integration. The lessons learnt include the need to focus, grab attention by using stories, engage and to take action. The Cooperative model of ACP development is unique in that it is a clinically-led initiative which transcends organisational boundaries.Positive Response to ACP via OSUMyChart (n = 21)Positive Response to ACP via OSUMyChart (n = 18)Total (n = 39)Male8 (38.1%)8 (44.4%)16 (41.0%)Female13 (61.9%)10 (55.6%)23 (59.0%)Internet Access17 (80.9%)8 (44.4%)25 (64.1%)Activated OSUMyChart11 (52.4%)3 (16.7%)14 (35.9%)Median Age Range65-7065-7065-70
A review of evidence supporting certain disability rights concerns about “end of life” advocacy
Authors: Coleman D , Drake S 
Published: May 2012

Attendees will have the opportunity to learn more about disability rights issues from a plenary speakers and an additional presenter. Central topics, with actual examples, will be:▶Rush to judgment cases – “pull the plug” versus “wait and see”▶Elder abuse – health care decisions laws that may appoint abusers as surrogates▶Futile care policies – overruling an advance directive▶Organ procurement policies for upper spinal cord injured, neuromuscular disabilities▶Organ transplant eligibility for people with disabilitiesAttendees will be able to consider research from medical literature which reveals “Things people with disabilities know that others spent millions to research about individuals and families”:▶People change their minds about what is acceptable as disease/condition progresses▶Family members don't consistently or correctly predict individual choices▶Family members have conflicts of interest and project personal disappointments onto their family member▶Lack of adequate home and community-based services is a big problemAttendees will be able to consider research from medical literature which reveals “Things people with disabilities know that others spent millions to research about health care providers”:▶Healthcare providers say things to influence/pressure individuals and families to withhold treatment▶Healthcare providers are not consistently accurate in predicting terminal status▶Healthcare providers devalue people with disabilities and serious health impairmentsA constructive relationship between the disability and palliative care communities could be developed based on recognition that healthcare policies affecting people with disabilities must be formulated with people with disabilities “at the table.”
Supporting community engagement around end of life conversations & care, an asset- based approach
Authors: Matthiesen M , Ashton J , Owen E , Froggatt K , McKnight J , Kretzmann J 
Published: May 2012

Healthcare systems and local hospices have extensive expertise and community connections around end of life awareness and care, however innovative and cost effective solutions are required to engage the wider (healthy, non-cancer, non-hospice) community if we are to align public preferences with outcomes of care at the local/community level in the future.▶Most adults have personal experience around death, dying, and bereavement.▶Leaders of community organisations are no exception.▶However, the varied backgrounds (personal and professional) must be given a common base upon which to lay the foundation for community-led engagement around this complex and taboo subject.An innovative programme is proving to be effective inspiring and engaging communities in the Northwest (UK) to launch awareness initiatives, overcoming the taboo of talking about death and dying, improving awareness of the need for advance care conversations, and increasing access to available community-based information and resources. Using a facilitated asset-based approach, partnership projects have been launched with funders, healthcare, hospices, and community agencies across seven communities (rural/city). Outcomes and evaluations to date from more than 150 participating organisations will be shared.
Final evaluation of the “Making Health Choices” advance care planning in aged care project
Authors: Sjanta R , Jackson L , Fullam R , Lewis V , Silvester W 
Published: May 2012

Published literature suggests that advance care planning (ACP) activity in aged-care homes is inconsistent and often of poor quality. There are few published reports of the effectiveness of formal training and implementation of ACP in aged-care homes. The Respecting Patient Choices Program piloted a training and implementation model in 19 aged-care homes in Victoria, Australia in 2010-11. The model required selected aged-care home nurses and management staff to attend 3 workshops over a 6-month period and complete pre and post-workshop tasks. The workshops included didactic and experiential teaching, discussions and role plays. Model evaluation included ACP documentation audits, in addition to pre and post implementation surveys to examine aged-care home ACP policies and practices, and staff knowledge, attitudes and behaviours around ACP. Key results were as follows:MeasurementPre-training (%)Post-training (%)P value% of staff reporting the existence of written policies on ACP in aged-care homes.531000.008% of aged-care homes. which discuss medical treatment options with resident/family421000.016% of aged-care homes which discuss “things that matter most about life and living” with resident8920.009% of aged-care homes reporting that ACP information is used effectively within the facility.331000.013% of staff reporting that ACP is carried out “well/very well” within their aged-care home.251000.009Mean staff score on ACP knowledge test [SD]4.4 [1.1]5.7 [0.9]0.001The available data suggests that the RPC model of ACP in aged-care homes succeeded in training staff and implementing ACP.
Controlled follow-up survey of qualified advance directives two years after implementation of an ACP program
Authors: In Der Schmitten J , Mellert C , Wegscheider K , Marckmann G 
Published: May 2012

Background: Implemented in 02/2009, the German regional ACP programbeizeiten begleiten® (‘be caring betimes’), based on Respecting Choices®, has demonstrated a moderate effect on the distribution of advance directives in the intervention region's nursing homes. In a follow-up study, we examined whether the effect was sustained and increasing over time.Methods: Two years after the intervention (04/2011), in a cross-sectional controlled follow-up survey we compared written AD's of all live residents and a random sample of recently (since 1.7.10) deceased residents of the three co-operating nursing homes (n/hs) of our intervention region with corresponding random samples of similar size among the residents of 8 n/hs in our control regions. Primary endpoint is the prevalence of qualified ADs; an AD was regarded qualified if it included a decision on CPR, and carried a physician's signature. AD status of 235 live and 35 recently deceased residents in the intervention region was compared with that of 279 live and 36 deceased residents in the control region.Results: In the comparison between intervention and control region, 56.7% vs. 26.0% had any written AD, 42.6% vs. 1.3% had an AD regarded helpful in case of sudden cardiac arrest, 38.3 vs. 5.7% were signed by a physician, and 37.8% vs. 0.6% fulfilled both criteria (p<0.001 for all comparisons).Conclusion: The data confirm a sustained and relevant effect of the regional ACP program's implementation whereas qualified AD's seem rare exceptions elsewhere in German nursing homes.
CREATING SACRED SPACE FOR DYING: THE CHRYSALIS ROOM
Authors: Downs Loretta 
Published: May 2012

The environment in which an experience occurs impacts the quality of that experience.Hospitals and nursing homes are the locations for 75% of deaths in America, contrary to the surveyed preference that 80% of us want to die at home.Institutions need to provide sacred space in the form of a private room(s) designated for the purpose of keeping vigil with the dying during the final, most sacred transformation of life:a Chrysalis Room.Death at home means a familiar environment filled with personal possessions and loved ones caring for the person dying. It means autonomy, privacy, comfort, quiet, control, and dignity. These qualities of home create the opportunity to care for each other, share stories, to make meaning of a life, to do the spiritual, emotional and psychological work of preparing for death. A chrysalis room in a nursing home or hospital is a quiet, comfortable, spacious, esthetic space designated for a dying person, in the care of hospice, to be supported through the final days of life. Family can be present and comfortable 24 hours. In a nursing home, the staff and other residents become family to each other. They are invited to be part of the vigil. Rituals are performed. Those who have been able to keep vigil in such sacred space report a peaceful experience, feelings of sorrow rather than painful emotions, and satisfaction for having been able to be there with one they love.
Disease specific advance care planning in a large health system
Authors: Schellinger S 
Published: May 2012

Current advance care planning practices focus on completion of a health care directive which usually lack clarity in treatment preferences, provide little assistance for patients, health care agents, care team to reliably honour goals and wishes and generally focus on end of life decisions. Individuals and their health care agents living with chronic illness are unprepared to respond to the medical decision making expected when an individual has an expected complication which results in an unexpected “bad outcome.” Individuals and health care agents who participate in Disease Specific Advance Care Planning (DS-ACP) discussions have excellent satisfaction ratings; are more confident in knowing individual treatment preferences; have increase prevalence of advance care plan documents in the medical record (94.3% vs. 24.9%, p<0.001); are more likely to receive care according to documented wishes; and receive end of life care prior to death (56% vs. 37%, p=0.002). As a result of the positive outcomes from DS-ACP, it is cultural accepted as standard in for all patients living with chronic progressive illness. DS-ACP facilitator certification is now a required competency for staff caring for the complex chronically ill.Key learning from the DS-ACP pilot identified the importance of the following strategies for successful adoption:Leadership/stakeholders engagement.Electronic referral and documentation process.Patient, family, care team engagement.DS-ACP included in system care improvement strategies.Standard ACP education/trainingLeadership to support process improvement and change management.
Physicians faced to treatments refusals
Authors: Biclet P 
Published: May 2012

French Law allows patients to refuse medical treatments even if they are indispensable for their survival. Faced with this situation, physicians are generally reluctant to stop treatments but finally comply with the patient's will. However they must be certain that the decision is conscious and free. We present different cases: Adult and minor Jehovah witnesses, hunger strikers free or in prisons, patients refusing artificial alimentation, people committing suicide, adolescents refusing cancer chemotherapy and discuss the role of physicians and care team. According the specificities of the different situations, the following points must be checked:- accurate information about the legal status of the situation faced with,- confirmation of the patient's decision after a reasonable period,- information about the nature futile or non futile of the treatment proposed,- aptitude of the patient to understand physician's proposal and to make up his mind.- certainty of the patient's age (minor), of the persons titulars of parental authority or identity of the guardians.Precautions that must be taken by the physician include precise writings of his, diligences, consultation of the care team, recourse to the attorney or to the judge according the country laws.
The results of the invasive neurodestructive procedures in cancer pain pilot study (INPIC) What is the role of cordotomy in pain associated with malignant mesothelioma?
Authors: Makin M. , Ellershaw J. , Leach A. , Poolman M. , Sharma M. , Jeffers G. , Bridson J. 
Published: May 2012

IntroductionThere are around 1800 new cases of mesothelioma annually in the UK.The incidence of mesothelioma is still rising and is expected to peak between 2010 and 2015.Symptom control is central to the management of patients with mesothelioma. The National Mesothelioma Framework (2007) has suggested that patients should have access to services that offer cordotomy to provide relief from pain. There is however, great inequity in the provision of services offering cordotomy; the level of evidence to support the provision of invasive neuro-destructive procedures such as cordotomy is poor. For this small group of patients the procedures may yield significant analgesic benefit, however there is an as yet unquantified associated morbidity. This is a pilot study that focuses on cordotomy.Aims and MethodsTo establish consensus on the role of cordotomy in mesothelioma related pain and to set up a National Registry. We undertook a systematic review of the literature, and used a novel web based consensus methodology approach to clarify the role of cordotomy in the management of mesothelioma-related pain. We examined whether there was sufficient evidence to support continued provision and commissioning of cordotomy, and provide a benchmark for the availability and use of this procedure in the treatment of pain associated with mesothelioma in the U.K. The study culminated in a Consensus Conference at the Royal Society of Medicine on the 10th October 2011. Following this, we will establish a national registry study for cordotomy in mesothelioma-related pain management with Dendrite Clinical Systems.ResultsThe results of the systematic review and web based consensus work will be presented. 101 participants completed the web based questionnaire; there were two rounds of Delphi before consensus was reached. Availability of cordotomy in the U.K. will be discussed.ConclusionThe approach of systematic review, Web Based Delphi, Nominal Group and Consensus Conference was successful. In view of this we plan to apply the methodology to other interventional approaches in palliative and supportive care. A surprise finding was the quantity of qualitative data that came through the web based consensus tool.
Bored to death? An exploratory study of boredom amongst hospice inpatients
Authors: E. Leahy H. , E. Sheils R. , M. Sorley R. , M. Taylor P. , Lennard R. 
Published: May 2012

IntroductionBoredom impacts upon psychological well-being and quality of life. There is little research into boredom in the physically ill, and none of patients in hospices in the UK.Aims and MethodsTo assess whether boredom is a problem in hospice inpatients; to identify factors that suggest which patients are most at risk of boredom; and to determine whether a single question (“Are you bored?”) identifies boredom as effectively as a detailed questionnaire. A validated scale, thePurposelessness, Understimulation and Boredom (PUB) Scale,was used to identify bored patients in 71 patients at three hospice inpatient units. Further questions were asked to look for an association of boredom with performance status, deafness and poor eyesight, ability to pursue long standing interests, and with depression.ResultsThere was a high prevalence (79%) of boredom in this sample population. There was no clearly identified predictor of susceptibility to boredom, nor correlation with a single question. If boredom is suspected then depression should be excluded as the two are closely linked.ConclusionGiven the psychological impact of boredom, we should investigate whether we can help hospice in-patients to find interesting or fulfilling activities in order to improve their quality of life.
It's getting harder to breath: non-invasive ventilation (NIV) in advanced chronic obstructive pulmonary disease (COPD)
Authors: Khan N. , Munday D. 
Published: May 2012

IntroductionDomiciliary non-invasive positive-pressure ventilation (NIPPV) is increasingly employed to provide respiratory support in chronic respiratory failure (CRF) due to COPD. Whilst there are associated positive financial implications in a particular sub-section of patients due to reduction in hospital admission stays, significant debate remains around its long-term usefulness in COPD patients.Aims and Methods1. Has health-related quality of life (HRQL) been assessed in severe COPD patients undergoing domiciliary NIPPV? 2. If so, what is the impact of domiciliary NIPPV on the HRQL of severe COPD patients? 3. What are the attitudes of COPD patients towards receiving NIV to palliate breathlessness during end-stage disease? Literature review and narrative analysis.ResultsA small number of studies have been identified that have assessed HRQL impacts of domiciliary NIPPV as a secondary outcome. However, there was wide methodological heterogeneity in NIPPV use and the HRQL tools used. There is a suggestion that severe COPD patients requiring NIPPV have a worse psychological status than non-COPD patients requiring NIPPV. NIPPV may help to reduce sleep disturbance and improve components of HRQL scores, however evidence is not conclusive. No studies were found that attempted to explore the attitudes of COPD patients towards receiving NIV to palliative breathlessness in terminal disease. Conclusion: HRQL has been assessed in severe COPD patients as part of studies that aim to assess health-related outcomes of undergoing domiciliary NIPPV. However, evidence regarding the role of domiciliary NIV in improving HRQL in end-stage COPD is conflicting due to a lack of adequate studies designed to answer this question primarily and methodological heterogeneity in existing studies. No qualitative research has been carried out to address this question. There is a need for qualitative studies that examine COPD patients attitudes towards NIV as a palliative measure, as it may be of relevance for patients in the decision-making process as part of advance care planning in COPD.
Volunteer activity in end–of-life care: a national survey of current practice
Authors: France R. , Sampson L. , Bravery R. , Low J. , Candy B. 
Published: May 2012

IntroductionSpecialised end-of-life care supports patients and families during the last months of life and, in the UK, is commonly provided either in a hospice or in a patient's home. Demand for such care in the UK will increase with mortality rates predicted to rise from 2012 to 2030 by 17%. The precise number and contribution of volunteers is unknown. However, it is estimated that there are over 100,000 volunteers working in UK hospices and that their contribution reduces costs by around 25%. The current economic situation is likely to limit funding. This means it is essential that we understand where volunteers are currently deployed to enable planning to be based on real practice.Aims and MethodsFocusing on volunteers in direct contact with patients and families this survey seeks to establish the extent of volunteer activity in UK end-of-life specialised care. A web-based nationwide survey of end-of-life care organisations, targeted at over 200 managers of volunteer services, including managers of hospices and home care teams.ResultsThe results, which will be available, will be analysed using descriptive statistics. They will give an overview of volunteer involvement in supporting patients and families in end-of-life care, detailing aspects volunteers are involved in and establishing which services are often volunteer-led.ConclusionThis will be the first UK-wide survey of its kind. It will highlight where further evaluation and development should be focused.
Supportive, interactive staff training may improve outcomes for residents dying in a care home.
Authors: Lewis-Holmes E. , Taylor E. , Pitfield C. , Morris J. , Wills G. , Carson N. , Jacobs H. , Livingston G. 
Published: May 2012

IntroductionDementia is associated with shortened life expectancy. Death may occur unexpectedly without end of life care planned. Most people would prefer to die at home, if possible, rather than in hospital. However, many with advanced dementia lack explicit end of life plans.Aims and MethodsThe project aimed to increase the number of residents with dementia (RWD) receiving their end of life care in the way that they and their relatives planned. We trained staff interactively, using case scenarios and encouraging reflection on their work, to enable end of life discussions with relatives. Our evaluation included residents' quality of life (QoL), and measures of staff's job demands. We implemented a training package addressing staff concerns, knowledge and communication skills. In depth interviews were carried out with staff and relatives, and collected QoL measures from 53 relatives of RWD, and retrospectively if their relative died. Staff job demand was measured.ResultsInterview analysis showed improvements in end-of-life planning and communication, and QoL improved at RWD's end-of-life. Staff's experience of job demand improved.ConclusionThe intervention improved end-of-life communication, planning and care, as shown by themes in qualitative analysis and QoL measures.