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Prevedello, Bradley A. Otto and Ricardo L. Creation of a head and neck Keloid quality of life questionnaire pages — W. Identifying quality indicators of surgical training: A national survey pages — Nasir I. Bhatti, Aadil Ahmed and Sukgi S. Surgeon-estimated costs of common consumables in otolaryngology pages — Jason A. Parnes, David H. Yeh, Jordan T. Glicksman, Marc A. Tewfik and Leigh J. Qualitative synthesis and systematic review of otolaryngology in undergraduate medical education pages — Stacey L.

Ishman, C. Stewart, James Stanley, Kevin D. Stierer, James R. Benke and David E. Laryngeal spindle cell carcinoma: A population-based analysis of incidence and survival pages — Pariket M. You have full text access to this contentTracheoesophageal voice after total laryngopharyngectomy reconstruction: Jejunum versus radial forearm free flap pages — Daniel G.

Deschler, Marc W. Herr, Joann R. You have full text access to this OnlineOpen articleTestimony by otolaryngologists in defense of tobacco companies — pages — Robert K. The unplanned intraoperative pharyngotomy: Pull, plug, or patch pages — Joseph Zenga, Evan M. Graboyes, Parul Sinha and Bruce H.

Mueller, Ahmed I. Speech-language pathology care and short- and long-term outcomes of laryngeal cancer treatment in the elderly pages — Heather M. Herbert, David W. Eisele and Christine G. Phonatory aerodynamics in connected speech pages — Jackie L. Rosen, Lan Yu and Amanda I. Differential roles for the thyroarytenoid and lateral cricoarytenoid muscles in phonation pages — Dinesh K. Evaluation of a new mid-scala cochlear implant electrode using microcomputed tomography pages — Christopher D.

Frisch, Matthew L. Carlson, John I. Lane and Colin L. Bone-anchored hearing implants in single-sided deafness patients: Long-term use and satisfaction by gender pages — Hubert T. Faber, Rik C. Nelissen, Sophia E. Kramer, Cor W. Cremers, Ad F.

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Snik and Myrthe K. Transcervical ultrasonography in the diagnosis of pediatric peritonsillar abscess pages — M. Taylor Fordham, Alex N. Effectiveness and costs of sialendoscopy in pediatric patients with salivary gland disorders pages — Kristina W. Rosbe, Dimiter Milev and Jolie L. Involvement in decision-making, and being helped to understand what was happening, was also valued.

Conclusion: It is important to understand the palliative care journey of people with ID in the context of their life story. What matters most to them, and what makes for a good quality of life, may not be immediately obvious to those who do not know the person well. Palliative care for people with ID needs to be highly personalised. If professionals are able to do this well, it will benefit all their patients, not just those with ID.

Froggatt K. Interventions to improve palliative care delivery in LTCFs are shown to be effective. Less is known about the nature of successful implementation processes. Aim: To identify palliative care implementation practices from current evidence to inform policymakers and practitioners.

Design: Two stage development process: 1. Transparent Expert Consultation event and online prioritization process. Methods 1. Controlled, non-controlled and qualitative studies and evaluations were included. Studies that met the inclusion criteria were sourced and data extracted on the study characteristics, the process of, and facilitators and barriers to implementation. Transparent Expert Consultation event. International experts in palliative care, gerontology and care homes attended a workshop to identify recommendations.

These were prioritized using an on-line survey with a wider group of stakeholders. Results: The review identified 8, abstracts; 62 studies were included.


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Preliminary findings were shared with 19 experts from 13 countries. From this matrix 30 recommendations were developed. Conclusion: Identifying implementation processes can be difficult as they are often underreported. A matrix model of implementation provides a clear structure for recommendations. Specifically the aims of the program are to:. Provide specialist palliative care and advance care planning advice to aged care providers and GPs providing health care for recipients of aged care services;.

Improve the palliative care skills and advance care planning expertise of aged care service staff and GPs providing health care for recipients of aged care services; and,. Improve the quality of care for aged care recipients, prevent unnecessary hospital admissions, and shorten hospital stays.

This session will explore how to use and apply the innovative ELDAC solutions that are designed to improve end of life care for older people in Australia living in long term care. This presentation will provide an overview of the first two years of the project and specifically showcase online knowledge translation and education products to improve advance care planning and palliative care for older Australians in long term care. Fox S. The Model for Dementia Palliative Care Project is currently underway in Ireland, aiming to develop an acceptable, evidence- and practice-based model for palliative care for people with dementia in the community.

Phase I involved a scoping review of the evidence for various components of a dementia palliative care model. Preliminary results of Phase III, evaluations of existing services, are available. Results: There is limited published research supporting components of dementia palliative care models in the community. However, the scoping review suggests that the core areas of an effective community model include: advance care planning, education on the disease process, hour nurse phone support, improved care co-ordination and family support. In addition, good communication between palliative care and dementia care teams was perceived to be core to a successful model, with a key worker needed to facilitate this communication, and to support families e.

Conclusion: Consistent aspects of an effective model were identified. This work builds on existing theory and research to ensure that future models of care in Ireland will be effective, evidence-based, feasible to adopt and acceptable to healthcare workers and potential users. Evans C. We used systematic review and consensus methods nominal group and online to develop the MORECare statement on best practice in EoLC research, including recruitment, ethics, attrition, mixed methods, complex outcomes and economic evaluation.

We critically consider the guidance by applying in a mixed method feasibility trial called OPTCare Elderly - optimising palliative care for people in the community. Results: Integration of data from 3 systematic reviews, 5 consensus groups and online responses to form the MOREcare statement comprising 36 best practice solutions.

Conclusions: Application of the MORECare statement can improve trial design by anticipating and planning for common challenges to enable recruitment, examine effectiveness and cost-effectiveness, and linkage between the problem and outcomes. The goals of palliative care delivery are multidimensional, and to achieve these aims interventions require multicomponent strategies.

This session will utilise the examples of three Australian clinical trials - a cluster randomised controlled trial of facilitated family case conferencing in advanced dementia the IDEAL Study , 1 a stepped wedge cluster trial evaluating cancer pain guideline implementation, 2 and a non-pharmacological multicomponent intervention to prevent delirium in hospitalised older people PRESERVE study 3 to illustrate the value add of mixed method evaluation. Agar M, Luckett T et al.

Effects of facilitated family case conferencing for advanced dementia: A cluster randomised clinical trial. Protocol for a phase III pragmatic stepped wedge cluster randomised controlled trial comparing the effectiveness and cost-effectiveness of screening and guidelines with, versus without, implementation strategies for improving pain in adults with cancer attending outpatient oncology and palliative care services: the Stop Cancer PAIN Trial.

Hosie, A. M, Lovell, M. Edwards, L. Multicomponent non-pharmacological intervention to prevent delirium for hospitalised people with advanced cancer: study protocol for a phase II cluster randomised controlled trial. BMJ Open. Aims: To illustrate how the Theory of Change methodology, developed by the Aspen Institute, can be integrated into the UK MRC Framework for Complex Interventions, to improve the development and evaluations of complex palliative care interventions. It is visually represented in a ToC map.

As part of two randomized controlled trials on implementing advance care planning in nursing homes and integrating an early palliative care intervention for frail older people , we have developed a ToC during the first development phase of the UK MRC Framework, using literature review and intensive and systematic stakeholder consultation and backwards outcome mapping.

Intervention components were identified as part of the ToC and defined as activities needed to achieve the different steps towards achieving the desirable impact. Results: Using the ToC methodology, the intervention programmes that were developed, differentiate between several micro e. Conclusion: Developing a Theory of Change helps in clearly identifying and describing all intervention activities and components of complex interventions and whether and how to achieve change.

This is necessary to improve comparability of interventions, replicability and implementation in practice. According to the World Health Organization WHO , palliative care is first and foremost a response to suffering of any kind, physical, psychological, social or spiritual. Among the serious health problems that most often produce suffering requiring palliation, the most common are life-threatening conditions such as malignancies and major organ failure. However, moderate or severe physical, psychological, social, or spiritual suffering also occurs among patients who can recover from their health problem or whose health problem can be cured or controlled for many years.

Curable conditions that may generate a need for palliative care include drug-resistant tuberculosis, some hemorrhagic fevers such as Ebola, and some malignancies. Conditions from which patients can recover but which may generate a need for palliative care include serious injuries and burns. The specific types and severity of suffering vary by geopolitical situation, socioeconomic conditions and culture. People in low and middle income countries often endure less healthy social conditions.

They also typically have less access to disease prevention, diagnosis and treatment, to social support, and to specialists and specialized services of many kinds than people in high-income countries. Thus, in low-resource settings, a wider variety of people with a wider variety of physical and psycho-social problems need palliative care than in high-resource settings.

This paper draws on findings from a UK study of palliative care in prison to explore the vulnerabilities of older prisoners facing the end of life in custody. The study used participatory action research to investigate and improve the provision of palliative care to this vulnerable population. The paper discusses some of the challenges in providing palliative care in a prison setting, and highlights issues such as prison design and layout, access to opioid medication, lack of equipment and other resources, and the constraints inherent in the prison regime. Implications for staff are also considered, and some initiatives to improve practice that emerged from the study are presented.

The French prison population is aging and particularly ill. Every year, about inmates die in prison from illness. In France, there is no specific system for palliative care for inmates unlike some other countries USA and UK which have been developing hospice care programs. What are inmates experiencing at the end of their life? The National Survey of the Palliative Situation among Inmates in French Prisons Project is a mixed-method study that combining quantitative and qualitative approaches Prison seems not to be a place to communicate about death and dying.

Mixing of incompatible parenteral drugs is seen as an important medication error. Avoidance of incompatibilities and instabilities of drug combinations represents prevention of medication error. The characteristic physicochemical properties of a drug molecule are governed by functional groups. When two or more drugs are mixed together for parenteral administration, different functional groups may interact giving rise to the long-recognised problem of physicochemical interactions. Incompatibility refers to a theoretically reversible physicochemical change that may result in precipitation or insolubility, which may not always be visible.

Physical incompatibility is a term that is occasionally used to describe visual changes that may occur when drugs are combined, such as particulate formation, haze, turbidity, crystallisation, colour change, or gas evolution. Instability refers to irreversible chemical degradation of the active compound, resulting in loss of potency.

Incompatibility of drug admixtures can be as a result of a number of factors including change of pH of the solution, dilution of co-solvent, salting out and cation-anion interactions. Since most drugs are small organic electrolytes which, in aqueous solution, behave as weak acids, weak bases or both, a rudimentary understanding of acid-base chemistry can be used to explain, identify and predict many drug-drug incompatibilities that result in precipitation. Drugs in solution can be susceptible to instability due to irreversible chemical degradation.

The best confirmation of stability and compatibility will always be the performance of an appropriate laboratory analysis to examine the range of concentrations commonly used, prepared in the preferred diluent s and stored over a range of temperatures and light exposure, reflecting use in the clinical situation. Aims: To identify the status quo of prevalence of off-label drug use in palliative care and to describe the clinical practice with regard to the awareness and management strategies of healthcare professionals regarding off-label-use.

Methods : In total we performed three studies. First a systematic review of international literature to determine the status quo, second a survey among German palliative doctors regarding existing guidelines for and views on off-label drug use in palliative care and third a cross-sectional analysis of prescribing data from a palliative care unit in Germany. Results : In the international literature the frequency of off-label-use in palliative care ranges between Conclusion: The prevalence of off-label drug use in palliative care is high.

Available data is heterogeneous making comparisons difficult. In summary little is known on off-label-use in clinical practice. There is a lack of evident information and guidance and a potential discrepancy between the suspected frequency and the actual need for off-label-use in palliative care. Drug therapy is a fundamental part of symptom control in palliative care. As well as its potential benefits, it also carries risks and a major aim should always be not to harm the patient.

Examples for risky areas in palliative care drug therapy are off-label drug use, polypharmacy and the mixing of drugs in infusion devices. Access to structured drug information may enable the prescriber to use all the possibilities of medication while limiting side effects. This lecture therefore aims to provide an overview on medication safety and to sensitize professionals to risk factors in the palliative care medication process.

Strategies for every day clinical practice to manage these challenges will be presented. The goal is to encourage participants to continue to learn and practise ways to improve the safety of medication use in order to avoid harm to the patient and to optimize drug therapy and subsequently symptom control. Dierckx S. Background: Evidence on the form and effectiveness of ACP for general practice is lacking. To address this gap, we developed an intervention to improve the initiation of ACP in general practice for people with a chronic life-limiting illness.

Semi-structured interviews with patients and GPs, questionnaires and detailed documentation of the study procedures were used to evaluate feasibility, acceptability and preliminary effectiveness of the intervention. Results: A total of 32 GPs agreed to participate in the study of which 18 were randomized to the intervention group. In total, 45 patients were considered eligible by the GPs and participated in the study.

Most GPs and patients valued the ACP discussions that took place: GPs were pleased that, in response to discussions, patients were prompted to think more about end-of-life issues or discuss their preferences with relatives, and that patients were reassured that some fears or uncertainties for the future were addressed.

We identified barriers at both the GP- and patient-level to discuss ACP, as well as difficulties with some study procedures that affected feasibility and acceptability. No differences in preliminary effectiveness on the quality of life of patients and quality of physician-patient communication between intervention and control group were found. Conclusion: We found a complex multi-component intervention to improve the initiation of ACP in general practice to be feasible and acceptable to both GPs and patients. This study also highlighted some important challenges regarding the study procedures and outcomes measures that will need to be addressed in a future large-scale trial.

Sudore R. Aims: To overcome literacy and language barriers to advance care planning ACP , we created easy-to-read advance directives ADs and an online advance care planning program PrepareForYourCare. Staff were blinded. The primary outcome was new ACP documentation in the medical record at 15 months. Patient-reported outcomes included ACP engagement at baseline, 1 week, and 3, 6, and months. We used intention-to-treat, mixed-effects logistic and linear regression, controlling for time, health literacy and baseline ACP, clustering by physician, and stratifying by language.

Results: patients enrolled in the 2 trials. The mean SD age was Results remained significant among English and Spanish-speakers. These tools may allow patients to begin ACP on their own and improve the process for diverse populations. Korfage I. Background: Advance care planning ACP encourages people to define, discuss and record their goals and preferences for future care.

Despite being internationally recommended, robust studies on ACP in European patients with advanced cancer are scarce. Methods: We performed a cluster-randomized trial in patients with advanced lung or colorectal cancer in 23 hospitals across six European countries. Use of care was derived from medical files. Multilevel regression analyses were performed taking into account potential clustering at hospital level. We did not find differences in change scores for symptoms, coping, patient satisfaction, and shared decision-making either.

Conclusion: In this large trial in patients with advanced cancer, the ACTION Respecting Choices ACP intervention had no effects on emotional functioning and symptoms and limited effects on secondary outcomes, including use of care. Nauck F. Background: Most European countries are hosting refugees, with some hosting large numbers in relation to their country population. Over half of them are under 18 years of age. Countries with high numbers of refugees and migrants such as Turkey report that their health systems are struggling to cope with the increased need for health services; while in refugee camps and settlements health care is often provided by humanitarian non-government organizations such as Doctors without Borders MSF , that have no formal palliative care programs.

A number of ongoing studies highlights the palliative care needs in migrant and refugee populations in Palestine, Uganda and Bangladesh. Aim: The EAPC has set up a task force to develop a White Paper on palliative care for refugees and migrants in Europe - undertaking a literature review, assessing the palliative care needs of refugees and making recommendations for palliative care professionals as well as for professionals working in humanitarian organizations.

The white paper is to describe structural and organizational aspects as well as methods for screening, assessment and treatment. Conclusion: There is a need for guidance on palliative care for refugees and migrants both for palliative care professionals and humanitarian organizations. The EAPC task force will collaborate with PALCHASE, which has been established as a collaborative of palliative care and humanitarian aid practitioners, ethicists, educators, researchers and advocates promoting palliative care integration in all humanitarian aid situations. As of January , there are The latter include 3.

While living in limbo, they often maintain multiple representations of home: their home of origin past , the home of their aspired destination future , and a home they inhabit during a period of protracted liminality present. These home representations are associated to their identity that is challenged and re-shaped in liminality. Recounting stories of life back home, is more than an act of remembrance, since it reflects a need for self-affirmation, while stories of resettlement in a desired home allow children to project self into the future.

Aims: Palliative care has been neglected during humanitarian crises as the imperative to save lives has often meant that the suffering of those who cannot be cured is forgotten. To date, very few programs provide palliative care in humanitarian crisis situations. Our aim was to assess the palliative care needs of those with life-limiting illnesses, and their caregivers during an evolving humanitarian crisis situation. Only one health facility had strong opioids available, and no patients had received opioids.

None of the health facilities surveyed were providing any palliative care and were instead focused on acute medical issues. Conclusions: The findings from this rapid appraisal of palliative care needs in the Rohingya refugee crisis in Bangladesh illustrates the specific and concrete needs in this particular context and has implications for the development of palliative care for humanitarian interventions in a global context. The methodology employed in the current study may prove useful in assessing palliative care needs of specific disadvantaged populations globally. To advance palliative care anywhere, we need to have facilitatory policy by governments and health care delivery agencies, access to essential medicines and concurrent education of professionals and common man.

Earlier efforts at education increased awareness but had no major impact in access to care. A collaborative of Indian palliative care activists with Pain and Policy Studies Group at Madison-Wisconsin from , analyzed opioid policy and worked systematically. Though a faciliatory opioid regulations resulted in , it had very little impact on access to palliative care nationally till a multi-pronged approach was started in Legislation for reform of law governing opioids. Though the efforts took 19 years, the Indian Parliament enacted a legislative reform in Influencing health policy of central and state governments.

Government of Kerala state created a palliative care policy in Government of India announced a national program for palliative care in The new health policy of India in included palliative care. Quality assurance. A national task force created by Pallium India created a minimum standards document in Inclusion of palliative care as part of medical and nursing education. In ,medical council of India accepted palliative medicine as a specialty. Post-graduate degree courses were started in Palliative Medicine in In , health university in Kerala included Palliative Care as part of medical curriculum.

Above reforms in the last one decade have together made the current environment conducive to growth. But improvement in access to palliative care continues to be slow. The missing link at national level appears to be adequate public awareness. It appears that with the buildup of the background work, what is needed is adequate public advocacy. The Ottawa Charter for Health Promotion presents five pillars through which healthcare services, communities and individuals can create health and improve wellbeing.

These principles have been applied to all clinical specialties in addition to schools, workplaces and urban environments. The application of health promotion principles to end of life care involves taking a broad perspective about the factors that impact on experiences and outcomes at the end of life, looking beyond healthcare services. Using strategies to prevent or reduce the effect of factors such as loneliness, inequity of access to services, poor health and death literacy and poor bereavement outcomes, it is hoped that broader experiences of end-of-life care will be improved across a community.

This intervention built links with members of the local community as they became Compassionate Neighbours and local advocates for end of life care. Twenty-one interviews, two focus groups and 19 episodes of participant observation were conducted,11 documents and service data on Compassionate Neighbours and Community Members was included.

Impacts from the work included a reduction in loneliness, improvements in wellbeing and changes to hospice practice. Further to this, three underlying drivers emerged that underpinned the work as a whole. They translated the observed actions of the project into the impacts and included: altered power dynamics,expression of reciprocity in relationships and the development of agency. This study provides a reflexive and critical account of the processes and impacts of compassionate communities in practice and poses new research questions for this important field.

Background: Patients with COPD rarely receive timely end-of-life discussions, and deterioration of their disease is often perceived as unexpected. The reluctance of physicians to initiate and conduct end-of-life discussions is one of the main reasons that patients do not usually receive palliative care in advanced COPD. We identified 11 studies. Semi-structured interviews with 14 physicians caring for patients with COPD on the respiratory wards in two hospitals in Slovenia were conducted and thematically analysed.

Results: Findings from the integrative review and qualitative study about the end-of-life conversations and experiences of physicians from Slovenia showed some common features. The initiation of end of life conversations in the earlier stages raised concerns about preservation of hope. Physicians perceive that it is difficult to invite patients in EOL decision-making discussions, especially about the possibility of introduction of invasive ventilation and intubation.

This may lead to avoiding difficult discussions or physicians reframe the information. Conclusion: Physicians experience prognostic uncertainty and lack of common consensus about when and how to introduce end-of-life discussions in advanced COPD as the main barriers in initiating and conducting such conversations. Deciding between active management of the disease and a palliative care approach presents a tension, which can lead to less open communication.

Fusi-Schmidhauser T. Background : Chronic obstructive pulmonary disease is recognized as being a life-limiting condition with palliative care needs. Nonetheless, palliative care delivery in this population is sporadic. The unpredictability of the disease trajectory and misconceptions in both patients and healthcare professionals about palliative care being exclusively relevant in cancer and in the last days of life limit palliative care provision in advanced COPD.

This systematic review aimed to explore how palliative care is provided in advanced COPD and to identify elements defining integrated palliative care. Citation tracking and evaluation of trial registers were also performed. Study quality was assessed with a critical appraisal tool for both qualitative and quantitative data. Results : Of the titles, 24 were eligible for inclusion. Experiences about living with advanced COPD, palliative care timing, service delivery and palliative care integration emerged as main themes, defining a developing taxonomy for palliative care provision in advanced COPD.

This taxonomy involves different levels of care provision and integrated care is the last step of this dynamic process. Conclusions : This literature review identified elements that could be used to develop a taxonomy of palliative care delivery in advanced COPD. This taxonomy will be linked to an action learning study of a joint respiratory and palliative care initiative in Southern Switzerland, aimed at developing new ways to integrate palliative care provision for patients with advanced COPD.

Preston N. Most people with COPD do not receive any sort of specialist palliative care involvement. Recognition that it is a terminal condition can be quite late in the disease trajectory with limited time to discuss future care plans. This is due in part to the difficulty in prognostication for this group but also reluctance by health professionals to initiate such conversations. This results in poor identification of palliative care needs of patients with COPD and they then receive less than optimal care.

A critique of tools used to identify end of life care needs of people with COPD will be presented. Based on this critique a novel hospital based approach, the CLEAR Framework has been developed to identify people with palliative care needs who have a COPD diagnosis and deliver improved care, which recognises end of life care needs of patients with advanced COPD. The aim is to identify people with COPD who have end of life needs, communicate effectively with them, their family and all members of the healthcare team, to decide upon the level of escalation in treatment patients require if experiencing an exacerbation of their condition.

In addition, advance care planning is introduced and these plans reviewed regularly. The framework brings together evidence on identification tools, integrated care guidelines and previously tested models of care delivery for this group of patients. This framework could be refined and adopted internationally. Aim: Barriers to the implementation of person-centred care within palliative care practice have been identified for patients and family carers.

A shared understanding of i the principles of person-centred care, and ii how to successfully implement person-centred interventions is therefore required. This paper aims to to define the key principles of person-centred care and identify barriers and enablers to implementation success within palliative care practice. Methods: This paper brings together the international evidence on person-centred care, and reviews the enablers and barriers to implementation within palliative care practice. It will draw on the experiences of the development of person-centred care practice and the implementation of the Carer Support Needs Assessment Tool intervention, a person-centred process of assessment and support for family carers.

Training is therefore required for the individual practitioner to help them integrate this approach into their everyday practice, and for the organisation to ensure adequate preparation, and the establishment of a strategy to support implementation. A team of practitioners within the organisation is needed to drive this implementation planning and ensure organisational readiness for change. Conclusions: The evidence presented provides vital lessons learned for implementation of person-centred interventions for patients or family carers within palliative care practice. The aim of this presentation is to reflect on adapting the CSNAT and implementing its person centred approach in the context of different national service frameworks.

A mixed-methods evaluation was conducted. Using KOMMA afforded sensitivity in person centred support and balanced the focus on family carers with patients. The training was modified to include a trial phase of using KOMMA, which was later evaluated as beneficial by professionals. However, any process of implementation in hospice and palliative care needs to be culturally and regionally sensitive and take account of differences in ways of approaching family carers in services as well as different professional backgrounds. Gardener A. This presentation will outline the development and clinical utility of SNAP.

Results: 1 The developed SNAP tool asks patients to consider whether they need more support across 15 broad areas of support need e. Data analysis is on-going. It appears feasible and acceptable across a range of settings, enabling care to be more person-centred.

Website: theSNAP. Shamieh O. Introduction: Palliative care in Jordan is better developed compared to most of Middle Eastern countries but still lagging behind western countries. Currently, palliative care is only accessible to a small portion of cancer patients, mainly at King Hussein Cancer Centre, in Amman, the capital city of Jordan. A national palliative care strategic framework is needed to advance palliative care development. Objectives: To describe the development of the national palliative and home care strategic framework in Jordan.

Methods: A systematic content analysis of palliative care needs in Jordan, SWOT analysis and multistage consensus procedure and national and international expert consultations were used to develop and revise the national strategic framework in Jordan. Results: A detailed content analysis of needs was completed. The development of the strategic framework involved multiple steps, the first draft was developed using the WHO framework by the national Palliative care committee, the draft was then revised by international experts. To reach a consensus, the second draft was revised in a national strategic multidisciplinary workshop of multi stakeholder experts.

The final version was approved by the national and the international experts. Conclusions: The multistage process of development and the involvement of key stakeholders led to significant revision of the framework and was successful in reaching a national consensus. The strategic framework was endorsed by the Minister of Health of health in late and was officially launched on April As in many countries, palliative care was first provided to patients and families requiring this care in the non-governmental sector. The work of hospices, providing compassionate care to patients and families with life-threatening and life-limiting illnesses received recognition by the communities they served, the government and funders.

Hospices have been providing this essential health service for over 30 years. SA Department of Health now recognise care as part of Universal health Coverage and include palliative care in the planned National health Insurance. HPCA have an active advocacy role in increasing the reach of palliative care working closely with departments of health. Thus, South Africa was primed to comment on and to co-sponsor the World health Assembly resolution The national steering committee has members from the National Department of Health, from HPCA, from professional councils and academic palliative care groups.

There are 7 task teams each allocated to address a specific WHA recommendation and the first success has been the development of the National Policy Framework and Strategy for Palliative Care which was approved by the National Health Council in April However, there is no budget; so the Funding Task Team led by the department of health has failed in its task!

This presentation will explore the steps taken to implement the policy and the importance of developing champions to drive the process both at poly level and on the ground. Aim: Research to improve access to palliative care in low and middle income countries LMIC requires strategic planning and sustained partnerships. We present achievements and challenges from global health palliative care research in building capacity and impact.

Methods: The design and conduct of timely and robust primary research in LMIC is driving both capacity building apprenticeships in research methods and study delivery, academic fellowships, postgraduate degrees, local mentorship cascades and driving impact dissemination activities, advocacy partnerships, implementation and quality improvement. Results: Research partnership guidelines underpin sustained, productive programmes. Outcome measurement research as an exemplar recruited the first African palliative care research nurses, generated publications with co-authorship, informed locally-led quality improvement strategies, embedded measurement within standards and guidance, and enabled both cohort and RCT studies.

Capacity-building grants with post-docs are adapting measurement to conflict settings, while advances in paediatric measurement led from Africa are informing studies in high income settings. A number of challenges persist. Paediatric research remains relatively poorly funded, and RCTs are rare. The body of evidence is small compared to the increasing need for palliative care and to competing health fields in LMIC.

Conclusion: Growth of individual researchers, and engagement with NGOs and advocacy bodies who lobby for evidence into policy, are crucial. Research partnerships are mutually beneficial, bringing methodological innovation and two-way learning. Breathlessness is a universal complaint among people living with heart failure HF. In less advanced stages of HF, it is only precipitated by exercise, which exceeds ordinary levels.

American Journal of Respiratory Cell and Molecular Biology

As the severity of HF progress, the capacity for exercise decreases and the threshold of exercise evoking breathlessness drops down. In the end stages of HF, those affected experience breathlessness after slight exercise or even at rest. Breathlessness evoked by heavy exercise and that which is present at rest are different entities, in respect of different initiating stimuli, signal transmission and processing, as well as their perception.

As a consequence, various pathways, neurotransmitters and receptors might be involved. When interpreting the results of research investigating therapeutic interventions and tailoring their management, the potential differences should be acknowledged. Breathlessness, which persists despite optimal causative management, should be considered as refractory and result in the initiation of effective symptomatic, palliative treatment, optimally together with the adjustment of disease specific medication.

They should be specifically managed if possible and if appropriate. If this is not the case, or if this causative treatment is not effective enough to alleviate the suffering, palliative treatment must be employed. Different types of breathlessness related to HF or commonly coexisting with HF and the tools to assess breathlessness will be addressed. People living with heart failure have a high symptom burden, with breathlessness being consistently rated as one of the most distressing symptoms. People with heart failure frequently experience both episodic and continuous breathlessness, with episodes triggered by activity, position changes or anxiety, as well as episodes with no obvious cause.

This can be a difficult symptom to manage pharmacologically, with limited options available to clinicians. Increasingly, research is demonstrating the benefits of non-pharmacological management of breathlessness in those with a range of advanced diseases, including heart failure.

This has been found to be particularly beneficial when delivered as a complex, multi-disciplinary intervention and has been shown to improve self-awareness of the symptom and self-efficacy, thereby improving quality of life. This lecture will discuss the latest research on non-pharmacological breathlessness management and outline current best practice in this field. It will provide information directly applicable to clinical practice including practical ideas for managing symptoms. In , an international Delphi process defined a clinical syndrome of chronic breathlessness.

This is an important step forward for people where the underlying causes optimally treated and, despite this, the person continues to experience disability. In terms of the modified Medical Research Council mMRC breathlessness scale, these people will be short of breath when walking along the flat at their own pace requiring them to stop every metres or breathlessness enough to be housebound or breathless getting dressed or undressed.

These are significant levels of disability that effect people with chronic heart failure numbers across our communities. Chronic breathlessness is systematically under-recognised and, when recognised, under-treated. The recognition of chronic breathlessness is a responsibility of every health professional. Better recognition and clinical response would help to relieve avoidable suffering in our communities. Whatever the underlying aetiology for the cardiac failure, a prevalent end point is chronic breathlessness.

When the underlying cause s is optimally treated, the residual breathlessness needs to be treated symptomatically. It appears that worst breathlessness is the target that will most benefit patients.

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Non-pharmacological interventions such as oxygen have not been shown to significantly reduce chronic breathlessness. Regular, low dose, systemic opioids have a role, with most evidence in studies of morphine. Having said this, there is a questions as to whether a there is a class effect of opioids; and b fluctuations in renal function are more limiting for use of morphine in heart failure. Background: Assisted dying is a contemporary issue with worldwide interest with debate often focused on the right-to-die.

Thus far comprehensive consideration of the experience of healthcare professionals has been lacking. Aim: The aim of this study was to explore and gain a deeper understanding of the assisted dying experience for Dutch healthcare professionals who have the longest experience of permissive legislation. Methods: This research utilised a constructivist qualitative approach, with thematic analysis, to analyse the care experience of 21 physicians, nurses and therapists working in a Dutch hospice or chronic disease care centre. Findings : All professional groups received requests for assisted death.

Large numbers of requests were heard at the hospice where half of admitted patients wanted to discuss the option. This could be onerous for professionals with a conscientious objection.


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  • All requests required an assessment of seriousness, exploration of patient fears, observation of psychological status and possible coercion. Opening up dialogue, optimising palliative care and resolving practical care issues were priorities.

    Applying such measures resolved the majority of requests and, in chronic disease, also delayed assisted deaths. Care continuity was valued, but such deaths were challenging and perceived as not normal. The administration of lethal drugs and post-death case scrutiny were stressful for physicians. Post-death debriefing and psychological support was valued, but adjustment to such deaths took time.

    Some physicians required a recovery period before considering new requests rising equality and equity issues. The involvement of nurses and therapists including previously unreported activities safeguarded patients. Assisted dying was perceived as significantly increasing workload, but this was not resented. Support for the provision of assisted dying was overwhelming, but this was unqualified in only a third of the participants. Background: Several jurisdictions around the world have passed laws that allow a physician, or, in some areas, a nurse practitioner to legally prescribe life- ending medications to individuals faced with a serious illness.

    There are some individuals receiving hospice services that also die by suicide without legal lethal means. Data were collected in through in-depth, semi-structured interviews with seven nurses, seven social workers, four physicians, and three chaplains. Participants in this study work with patients who utilise medical aid in dying despite dilemmas related to personal values, or organisational policies that conflict with the principle of non-abandonment.

    Many deaths by suicide may be interpreted as rational but a perceived taboo about suicide limits open conversations among professionals and within organisations. Conclusion: Culture, location, socioeconomic disparities, and organisational policy impact how patients perceive, accept, or afford medical aid in dying in Washington State.

    Palliative care professionals working in the home setting need open communication within teams and training about assessing patients at risk of suicide and those who seek to utilise medical aid in dying. Gamondi C. Background: In Switzerland euthanasia is not permitted, but assisted suicide is permitted. If the assistance has no selfish motivations, those providing it are not prosecuted. There is no federal law regulating assisted suicide provision in Switzerland, although two cantons have enacted legislation regulating assisted suicide in public institutions.

    Methods: Twenty-three palliative care physicians were interviewed; thematic analysis was used. Results: It emerged that they receive assisted suicide requests regularly and tended to follow a common pattern in responding to them. In conclusion. Participants had received little training on responding to assisted suicide requests. Responding to assisted suicide requests remains a difficult task for Swiss palliative care physicians. Opportunities: Several opportunities will be discussed. In addition it means that sampling errors, selection bias and recall bias are avoided.

    Other opportunities stem from the possibility to use innovative methodologies or analyses, such as the use of machine learning or algorithms for prediction. Challenges : That the data used are routinely collected also brings challenges. For instance with regard to the suitability of the data for research. Another challenge is that palliative care is recorded and, hence, can be recognized in databases can differ.

    This is especially challenging in international comparative research. Finally there are also ethical challenges e. In conclusion: It will be argued that the opportunities outweigh the challenges if the latter are considered and solved or taken into account in interpretation. Background: Big data can provide evidence about effectiveness of interventions at the end of life that is difficult to provide via clinical studies. For instance, because palliative home care is -in many countries- a patient right, it is impossible to conduct a randomized controlled trial RCT allocating a group to receiving palliative home care and withholding such care to a control group.

    Aim: This presentation evaluates the impact of palliative home care on the quality of care and costs at the end of life using a propensity score matching technique. Outcomes concern previously validated indicators of appropriateness and inappropriateness of end-of-life care and total inpatient and outpatient health care costs in the last 14 days of life post-exposure period.

    Conclusion: This presentation illustrates how big data that simulate the controlled circumstances of an RCT as much as possible are a good opportunity to provide the best possible evidence about the impact of palliative home care on quality and costs of care. Routinely collected clinical and administrative data are increasing in volume and improving in quality. This opens many opportunities for palliative care research, especially for describing and evaluating the effectiveness of healthcare services provided to people near the end of life. We will take advantage of high-quality registers with national coverage in Sweden to illustrate with concrete examples how this type of data can be used to answer different research questions, by applying different study designs to investigate different outcomes in different populations.

    The presentation will be highly interactive. After a short introduction, the audience will be asked to make decisions regarding the research question, the study design, the definition of the study population, and the statistical models. Data will be analysed in real-time based on the choices made by the participants, and the results will serve as a springboard for discussing the methodological caveats of this type of studies.

    Delirium is a highly prevalent and distressing clinical syndrome in palliative care. Delirium is universally under-detected and poorly managed, in a wide range of health care settings including palliative care. Improvements in delirium care require attention to prevention, assessment, management, and communication with patients and their families. Quality initiatives to enhance delirium care require an interprofessional approach, underpinned by policy, evidence-based guidelines and education. Approaches, evidence and resources developed in other health care settings also need to be translated to suit palliative care practice.

    In this session, delegates will have the opportunity to discuss the individual, service, system and policy level challenges in delirium practice change, and have the opportunity to learn in more detail about frameworks, guideline development and international initiatives that enable quality delirium care in the palliative care setting, and consider how these can be applied in their practice context.

    This session is led by two experienced delirium researchers and advocates for improved delirium care in the palliative care setting; through their leadership of the Delirium in Adult Cancer Patients: ESMO Clinical Practice Guidelines and European Delirium Association Board Membership respectively.

    The session will facilitate an interactive discussion around the key clinical challenges faced in palliative care practice and debate what is best practice in relation to screening for delirium, prevention, non-pharmacological care, pharmacological approaches and support for carers. Delirium care is an interdisciplinary enterprise; the session will consider how we can best engage our teams in delirium care, improve communication about delirium and feel supported when witnessing delirium in our patients distresses us.

    People experiencing homelessness often have very poor health and a higher risk of death than the housed population. They often present with a combination of severe physical and mental health difficulties, complicated by substance misuse trimorbidity. Trimorbidity, lack of stable accommodation and lack of family to provide informal care make delivery of palliative care challenging. Delegates will be encouraged to think about the homeless population as not just the visible homeless, but as a broader vulnerable population including the hidden homeless. In this session two speakers from different professional backgrounds of palliative medicine and general practice will present.

    Both work with people experiencing homelessness and have conducted research on the delivery of palliative care to this population. The speakers will discuss the challenges identified from their research and work.

    Recommendations, along with tools and resources, will be presented. The presentation will also include reference to international research and will draw on knowledge and experience from other specialties such as public health, and the emerging field of inclusion medicine. The health service utilisation by people experiencing homelessness, and how interactions with staff and services can differ from the housed population, will be discussed.

    Speakers will challenge current models of care, and encourage the delegates to think about service delivery from a different perspective. This session aims to encourage delegates to think about their own local palliative care services and what initiatives could be undertaken to address the palliative care needs of this marginalised population. Knowledge transfer and exchange refers to the process by which researchers work to engage with policy and practice settings to maximise the likelihood that evidence-based knowledge may be positioned to inform practice.

    This has been identified as a challenge in many areas of health services research, including palliative care. In a global research context this challenge can be increased due to inequalities in access to traditional dissemination products, such as peer-reviewed journals and professional conferences. There is a need to consider how to promote effective knowledge transfer and exchange in a global community.

    The aim of this session is to support health care professionals, researchers and those interested in ensuring that evidence-based palliative care knowledge reaches its beneficiaries. EMTReK - the E vidence-based M odel for the T ransfer and exchange of Re search K nowledge was developed based on a systematic review of models relating to knowledge transfer in health services research.

    EMTReK encourages researchers to consider the multiple messages from research that may be relevant to different audiences at different stages of the research process. By the end of the session it is hoped that delegates will be able to i identify challenges around achieving effective sharing of palliative care knowledge to ensure access for all; ii apply the key components of EMTReK to their dissemination activity; iii develop an effective dissemination plan for palliative care knowledge; iv recognise and use traditional and non-traditional dissemination tools and communication channels; and v understand the importance of continuous evaluation during the dissemination process and develop an evaluation plan alongside these activities.

    Looking at historical precedents, the establishment of a strong academic presence of palliative care including but not limited to physicians will most likely be a decisive factor in the development, and even survival, of the discipline. The presenters have contributed to the creation of networks of multidisciplinary palliative care professorships, with both private and public funding, in France R.

    We hope that our experiences may motivate and help the delegates in developing strategies aimed at improving the academic standing of palliative care in their respective countries through the creation of university positions and the establishment of academic networks. WHO recommends a stepwise approach to integrating palliative care into health services in general, and into primary care in particular, in a cost-effective manner, to reach all those in need.

    This strategy includes:. In settings where primary care is underdeveloped, primary care and palliative care can be developed and expanded at the same time.