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Home is regarded as an important and safe place to be when nearing the end of life. However, for some, the home may be a place where people feel anxious and alone. The aim of this discussion paper is to reflect on the contextual and theoretical meaning of home. We will, based on a broader understanding of home, also suggest that home-deaths can take place both in a home-based care context and a facility-based care context, as the meaning of home belongs to the individual. We will end our discussion by concluding that the actions of care and nurses’ attitudes are of vital importance, so that a feeling of home can be created for patients nearing the end of life, irrespective of their context. [ABSTRACT FROM AUTHOR]

Copyright of Journal of Medical Imaging & Radiation Sciences is the property of Elsevier B.V. and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Chronic or refractory breathlessness adversely affects quality of life. Current treatment strategies for managing breathlessness are often inadequate in providing complete relief. Kinesiology taping is generally used in musculoskeletal practice for preventive and rehabilitative purposes. Recently, our attention was drawn to the plausible mechanism(s) and indication for use of kinesiology taping for managing chronic breathlessness. We present a brief review of the scientific rationale and efficacy of kinesiology taping for respiratory function-related outcomes. Through this publication, we hope to catalyse discussions amongst palliative care professionals and researchers on the potential use of kinesiology taping in the management of chronic breathlessness. [ABSTRACT FROM AUTHOR]

Introduction. Palliative care embraces the plight of patients and caregivers. Cognitive and emotional empathy, empathetic care and the information environment at a time of dying influence caregivers' experiences of information interactions and emotional well-being. Understanding empathetic care, and the need for empathy in caregiver information interaction experiences in both palliative care and information behaviour, is still too limited. Visceral autoethnographic sharing combined with other qualitative research methods may help. Method. This paper intends to push the boundaries of research on the complexities of information interactions experienced by caregivers in empathetic care for the dying. Themes for further research are deducted from the subject literature, recorded experiences of caregivers, and our own experiences and insight gained from dual sharing experiences as information behaviour researchers and caregivers (i.e. collaborative autoethnography). We allow for etic (outsider) and emic (insider) perspectives. Information behaviour, collaborative autoethnography, and the philosophy of palliative care served as research lenses. Analysis. A cursory thematic content analysis was applied to the literature on caregiver experiences, caregiver 'voices' on information interaction, the value of collaborative autoethnography and our own shared experiences. Results. Key research themes include: caregiver sense-making in individual situated contexts; conceptualisation of empathy and empathetic care; cross disciplinary collaborative autoethnographic research. Conclusion. Since conventional research designs alone cannot address the complexities of information interactions, and there has been a failure to meet with the expectations of caregivers at the time of dying, alternative designs such as inter-disciplinary collaborative autoethnography supplemented by qualitative mixed methods research must be considered. [ABSTRACT FROM AUTHOR]

Focuses on the use of complementary therapies in hospice and palliative care in the U.S. Background on a trend in the use of complementary and alternative therapies; Role of the Hospice and Palliative Nurses Association Board of Directors in addressing issues involved in complementary therapies; Definitions of concepts in complementary and alternative therapies.

The article includes a comprehensive bibliography focused on significant papers across various priority journals. Topics include public perception of palliative care in Germany, aspects of palliative care in multiple sclerosis, and the lack of a palliative approach in terminal hospital admissions for chronic disease in rural settings. Relevant research papers, reviews, and case reports are indexed, primarily in English, and include full source data and abstracts.

Most international definitions of palliative care in the worlds of policy and practice emphasize the 'holistic' dimensions of end-of-life experience and its care. To discover whether the definitions of palliative care are reflected in the field's research priorities. A content analysis of two research journals, one British and the other American, is described to provide a simple indicative answer to this question. The abstracts of 609 research papers drawn from these two journals between the years 2021–22 were examined thematically. The categories of physical alone, physical, and psychological, and psychological alone, when combined accounted for 69% of all research reports. The broader social aspects of care, outside of communication and advance care planning, were largely unaddressed. The social domain accounted for 29%, but 78% of this figure was about advance care planning and communication. Likewise, the role of spirituality, present in most of the definitions, was under researched and under reported. Even within this context, the results were disappointing. Spiritual care accounted for only 2% of reports. Examination of research publications of two major palliative care research journals showed a significant overemphasis on symptom management and health service delivery assessments. This significant dearth of investigation in the major areas of social and spiritual domains is a call to action for researchers, grant making bodies, researchers, ethics committees, and journal editorial teams. [ABSTRACT FROM AUTHOR]

Background: General practitioners (GPs) have a key role in palliative care provision for patients with advanced cancer. Continuity is valued by patients with such needs but is limited within current primary care systems. Exploration of the facilitators of and barriers to continuity in this complex context is required. Aim: To identify facilitators of and barriers to continuity with GPs in primary palliative care among people with advanced cancer and/or their close persons. Design: Mixed-methods systematic review with content and thematic analyses. Data sources: Keyword searches were carried out in five databases (Ovid MEDLINE(R), Ovid EMBASE(R), CINAHL, Web of Science, and Cochrane), policy documents and grey literature search engines in December 2020. Evidence was reviewed using relevant quality appraisal tools; data were extracted and tabulated. Findings were reported in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses statement, and the review was prospectively registered on PROSPERO. Results: Seventeen studies were included. Six studies originated from the UK; six from Europe; three from Canada; and two from Australia. Two studies were mixed-methods, four presented quantitative data, and 11 papers reported on qualitative studies. Four themes were developed: (1) the role of GPs in facilitating continuity; (2) the role of patients and/or close persons in facilitating continuity; (3) changing needs throughout the disease trajectory; and (4) the organisational context in primary care. Conclusions: Facilitators of and barriers to continuity in primary palliative care are outlined. Further research is required to explore how patients and/or their close persons experience continuity in primary palliative care. Specifically, the work required of them to achieve their desired level of continuity, and their capacity for action in this context, needs further attention. [ABSTRACT FROM AUTHOR]

There are many challenges in providing palliative and end-of-life care to people with dementia; some of which may be reduced through advance care planning (ACP) to support the person with the diagnosis to have a greater influence on their care at end-of-life. Advance care planning has been defined as a process of discussing and recording wishes, values, and preferences for future care and treatment held between an individual, family members and their care provider(s) that takes effect when the person loses capacity. This paper considers some of the barriers and enablers to lead to better support of ACP in families affected by dementia. [ABSTRACT FROM AUTHOR]

Paramedics frequently encounter patients requiring palliative and end of life care. This is anticipated to increase with an ageing UK population, a strengthening preference for care and death to occur in the home, alongside pressurized community services. Nationally education is lacking and despite localized efforts of improvement, widespread change within ambulance services to advance the quality of care for this patient group has been slow to emerge. This paper describes two UK ambulance service improvement programmes that have sought to address this need. South Western Ambulance Service NHS Foundation Trust and London Ambulance Service NHS Trust collaborated with a nationally renowned charity, Macmillan Cancer Support, to create innovative programmes of change. Both services targeted data exploration, valued inter-professional learning and effectively engaged local stakeholders. Experience demonstrates the need for collaboration with specialist palliative care and dependence on community services to access support and alternatives to hospital conveyance. This paper considers the future for end of life care leadership in UK ambulance services and the development of specialist paramedic roles. While the future of an alliance of paramedicine and palliative care is yet to be fully realized, our work exhibits the significant progress made by UK ambulance services. [ABSTRACT FROM AUTHOR]

Organ donation is critical to the survival of thousands of people waiting for an organ transplant. While nurses take responsibility for patient and family comfort and quality of dying whenever patients die in the intensive care unit (ICU), organ donation presents unique challenges to these ideals. Critical care settings are essential for organ donation, where candidates for donation are identified, referred, stabilized, and maintained until organs can be retrieved. Nurses may feel challenged in completing organ donation-related tasks without forsaking values and practices that are typically associated with a palliative nursing approach and the achievement of a ‘good death’ in the ICU. Further, the moral uncertainty in this context could be increasing, given the advent of a new pathway for organ donation in ICU: medical assistance in dying (MAiD). In this paper, we reflect on the ethical meanings, challenges and possibilities of a good death in the context of organ donation in ICU nursing. We argue that personhood—as a conceptual frame to guide nursing practice—offers one way of reconciling seemingly disparate values and practices. To illustrate the importance of integrating this concept, we draw on real-life case studies from clinical ICU nursing. These examples showcase the emotional engagement and moral tension that nurses could experience when caring for people who occupy a liminal space between life and death. Ultimately, we hope this paper will inspire and support ethical reflection and action among ICU nurses caring for organ donors. [ABSTRACT FROM AUTHOR]

Background: People in palliative and end of life care often experience issues relating to feelings of loneliness and feeling unable to connect with and express their emptions. This can lead to poorer outcomes for people, and inhibits person-centred experiences. Aim: To understand the benefits of poetry therapy for people in palliative and end of life care. Methods: A narrative review of literature pertinent to the use of poetry with people in palliative and end of life care produced 13 relevant papers, which are presented within this paper. Results: Within the literature, 4 key themes emerged: (1) The impact of poetry on the wellbeing of people in palliative and end of life care, (2) the impact of poetry on the wellbeing and confidence of health care professionals, (3) the value of poetry for family members preparing for and coping with bereavement, and (4) The value of poetry in facilitating person-centred practices in palliative care. Conclusions: Poetry therapy can enable a person-centred culture by promoting feelings of well being for people in palliative care, and is also beneficial for health care professionals and family members. [ABSTRACT FROM AUTHOR]

Dementia has not traditionally been conceptualised as a terminal or life-limiting condition. Yet, dementia can significantly reduce a person's survival time from the onset of symptoms and has been shown to be similar to that of some cancers. Alongside this, with the growing number of cases of dementia expected over the coming decades, we can also expect to see the number of people dying with or from dementia increasing. Supporting good quality palliative care for people with dementia will be required by all clinicians in all care settings. This final paper in the series follows the case studies of two people with dementia as they reach the end of their lives. [ABSTRACT FROM AUTHOR]

The long-term care workforce is a significant provider of palliative care. The majority of older people being admitted to long-term care have palliative care needs and many are approaching end of life. The long-term care workforce comprises both registered health care professionals and unlicensed health care workers (UHCW) who provide most direct care. Studies that have examined palliative care competence in long-term care have focused on staff knowledge. However, it is also important to understand staff attitudes, beliefs, and values towards palliative care because these attributes influence behaviours related to care provision. The aim of the qualitative evidence synthesis is to identify and appraise the best available qualitative evidence on the attitudes, beliefs, and values of the long-term care workforce towards palliative care. The review will consider original research that reports qualitative findings of long-term care staff and their attitudes, beliefs, and values regarding palliative care for residents of long-term care facilities. The following databases will be searched for eligible papers: CINAHL, EMBASE, PubMed, PsychINFO, and Scopus. Studies that meet the inclusion criteria by addressing all of the phenomena of interest will be reviewed using the Joanna Briggs Institute (JBI) methodology for systematic reviews of qualitative evidence. Two reviewers will independently assess the studies for methodological quality. The data will be extracted using the standardized JBI SUMARI extraction tool. Specific details about authors and publication date, study design, aims, context, population, cultural and linguistic background, location, main findings, limitations, and conclusions will be extracted and a level of credibility assigned. Categories will be developed from the findings. The findings will be presented diagrammatically and accompanied by a narrative to explain categories and synthesised findings. The review of the literature will synthesis key findings pertaining to the attitudes, beliefs, and values of the workforce providing palliative care to older people in long-term care, beyond what is known about palliative care knowledge in this workforce. [ABSTRACT FROM AUTHOR]

Copyright of RGO: Revista Gaúcha de Odontologia is the property of RGO: Revista Gaucha de Odontologia and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

The grief associated with bereavement, while a natural response to loss, is usually a traumatic life event. The bereavement experience for a primary caregiver with the experience of caring for a loved one is complex, especially if this role has required them to relinquish aspects of their own life. The healing trajectory for the bereaved carer is often more complex than for many other bereavements, given the pre-death experience of caregiving. This paper describes the development of a bereavement model which arose from significant clinical experience of working with bereaved carers in a community palliative care environment. The model assists the bereaved carer in gaining insight into their experience and a focus for their psychological and emotional expression, thereby promoting adaptation to the transition and promoting a healthier grief trajectory. [ABSTRACT FROM AUTHOR]

The teaching problem in undergraduate nursing students (UNS) is a lack of empirical evidence of teaching methodologies for achieving palliative care competencies (PCC). The purpose of this review was to synthesize the evidence of palliative care (PC) teaching methodologies for UNS and their effectiveness to achieve PCC. Four electronic databases were searched, including Scopus, ProQuest, PubMed, and CINAHL, from 2015 to 2020. Full-text available, published in peer-reviewed journals, written in English and aimed at verifying the effectiveness of teaching methodologies for achieving PCC were included. The Critical Appraisal Skills Programme (CASP) checklist was used to appraise the trustworthiness, relevance, and the results of published papers. Five studies were considered relevant for this systematic review. The learning methodology carried out to achieve PCC for UNS varies from multimodality approaches, simulation-based experience to high fidelity simulation. Kolb's Experiential Learning Theory proved to be effective in improving students' PCC, especially in the aspects of knowledge, attitude, comfort, and selfawareness. The learning methodology identified in this review was proven to be effective to improve the PCC on UNS; simulation being the most widely applied method in teaching strategies. [ABSTRACT FROM AUTHOR]

BACKGROUND: During the coronavirus disease 2019 (COVID-19) outbreak, a critical care outreach team was implemented in our hospital to guarantee multidisciplinary patient assessment at admission and prompt ICU support in medical wards. In this paper, we report the activity plan results and describe the baseline characteristics of the referred subjects. METHODS: We retrospectively evaluated data from 125 subjects referred to the critical care outreach team from March 22 to April 22, 2020. We considered subjects with a ceiling of care decision, with those deemed eligible assigned to level 3 care (ward subgroup), and those deemed ineligible admitted to the ICU (ICU subgroup). Quality indicators of the outreach team plan delivery included number of cardiac arrest calls, number of intubations in level 2 areas, and ineffective palliative support. RESULTS: We enrolled 125 consecutive adult subjects with a confirmed diagnosis of COVID-19. We did not report any emergency endotracheal intubations in the clinical ward. In the care ceiling subgroup, we had 2 (3.3%) emergency calls for cardiac arrest, whereas signs of ineffective palliative support were reported in 5 subjects (12.5%). Noninvasive forms of respiratory assistance were delivered to 40.0% of subjects in the ward subgroup (median 3 d [interquartile range (IQR) 2-5]), to 45.9% of subjects in the care ceiling subgroup (median 5 d [IQR 3-7]), and to 64.7% of subjects in the ICU subgroup (median 2.5 d [IQR 1-3]). Thirty of the 31 ward subjects (96.7%), 26 of the 34 ICU subjects, (76.4%), and 19 of the 61 ceiling of care subjects (31.1%) were discharged. CONCLUSIONS: In the context of a hospital and ICU surge, a multidisciplinary daily plan supported by a dedicated critical care outreach team was associated with a low rate of cardiac arrest calls, no emergency intubations in the ward, and appropriate palliative care support for subjects with a ceiling of care decision. [ABSTRACT FROM AUTHOR]

New public health approaches to palliative care highlight the role of communities in care, yet there is little evidence of studies on community-led initiatives in the palliative care context. Therefore, the aim of this study, which took place in Auckland, New Zealand, was to (1) explore Pacific family carers' views on what they need to feel supported as they care for older family members at the end of life and (2) to devise a resource that reflects their views that may be used to raise community awareness about these needs. This was achieved using a Participatory Action Research (PAR) framework in which a focus group was carried out and a work group formed to implement the focus group's recommendations that were informed by a thematic analysis of the focus group data. The analysis resulted in the foregrounding of four themes, with the focus of this paper being on the 4th theme, the centrality of spirituality for a group of Pacific caregivers. This emphasis was chosen due to it being an underexplored topic in the palliative care literature. Co-creating resources based on research with community members allows for the development of tailored approaches of significance to that community, in this instance, a music video. [ABSTRACT FROM AUTHOR]

It is projected that by 2051, close to a quarter of the Australian population will be over the age of 65 years, 5% of which will be over the age of 85 years (AIHW, 2021). It is not surprising, then, that palliative care has garnered increasing attention in healthcare aims and practices. The cornerstones of healthy ageing and wellbeing are maintaining optimal health and function for as long as possible and supporting individuals with the utmost dignity and care during loss of function and/or progression to end of life. Health professionals, including speech-language pathologists (SLPs), are integral to support healthy ageing and eventual progression to end-of-life care. It is therefore imperative that health professionals such as SLPs are equipped with the necessary skills to provide effective care to individuals receiving palliative care. This paper explores the role of SLPs in end-of-life care, and what is currently known about the preparedness of SLP graduates to support individuals in palliative care settings. [ABSTRACT FROM AUTHOR]

Paramedics play an essential and distinct role as providers of care to the dying, deceased and bereaved in Aotearoa, New Zealand and around the world. In this paper, we highlight what is known about the features, barriers and facilitators of quality end-of-life care by emergency ambulance personnel. We also identify priorities for future policy and practice, education and research in this area. Paramedics provide urgent and after-hours support to those with known life-limiting illness and their caregivers, but also attend sudden deaths, from unexpected or unknown causes. Paramedic care at the end of life may involve attempted resuscitation; challenging decision-making and communication; symptom relief; recognition of irreversible dying; provision of compassionate, culturally responsive support for co-responders, bystanders and the bereaved. There is an insufficient acknowledgement of the critical and unique role of paramedics, as providers of urgent care to the dying deceased and bereaved. Ambulance personnel around the world want better preparation and support for end-of-life care. Future research should aim to evaluate and improve this vital care, explore the needs and experiences of those who call an ambulance in the context of death, dying or bereavement and address equity and cultural responsiveness. [ABSTRACT FROM AUTHOR]

Australia is one of the most successful multi-cultural countries in the world, resulting from continuous immigration for the last 70 years or so. Australia is home for people from almost 200 countries with more than one in five speaking a language other than English at home. Some people arrive in Australia seeking protection from conflict in their own country. They may seek protection as a refugee and in the meantime live in the community while awaiting the outcome of their asylum request. Drawing on a story of one asylum seeker, this paper describes some of the key considerations required in caring for an asylum seeker who is facing the end of their life, making recommendations for addressing their often-complex care needs. [ABSTRACT FROM AUTHOR]

Introduction: Dysphagia and communication changes are common in life-limiting conditions and Speech-Language Pathology (SLP) involvement to facilitate effective communication, eating and drinking contributes to the goals of comprehensive palliative care. Aim: To examine the existing literature around the role of SLPs in palliative care to define the best practice role for SLPs in this area, identify current services and interventions provided by SLPs to patients with life-limiting conditions, assess for potential gaps between best practice in the literature and everyday SLP practice and opportunities for improvement. Methods: The methods used were electronic literature searches within MEDLINE, EMBASE and CINAHL, and manual searching. Papers were classified according to type. Meta-analysis was not appropriate due to the nature of the papers, and so a narrative exploration of themes was conducted. Results: Thirty-two papers were included (eight research, twenty-four non-research). Discussion: Specific roles for SLPs in dysphagia, communication, and holistic professional practice were identified. There is insufficient research to determine whether this is reflected in everyday SLP practice. Potential challenges to providing services include the impact of working with people who are dying, limited professional preparation, ongoing education constraints, and legal and ethical considerations. Further research into SLP activities with patients with life-limiting conditions is required to explore the valuable contributions already being made by SLPs to the care of patients with life-limiting illnesses and to identify opportunities to develop and improve evidence-based services in this area. [ABSTRACT FROM PUBLISHER]

Our choice for care at the end of our lives is constrained by many factors, including the options available to us, our capacity to choose and the social structures that constrain our options and therefore our choices. Working with the interaction between personal agency and social constraints is a core public health activity. An intentional public health approach to palliative and end-of-life care can elucidate the direct relationship between our social circumstances and the quality of our end of life and uncover the implications of structural inequity for end-of-life choice. The approach reorients systems and settings to achieve accessible and equitable palliative and end of-life care for all, and identifies contributions that all jurisdictions, settings, organisations, sectors and communities can make to improving end-of-life care outcomes. Frameworks that support this shift in practice and policy are however in their infancy. Implementation frameworks that can structure and guide 'how' to translate public health palliative care concepts into sustainable practice are needed. This paper reports on an evidence-based Australian public health palliative care framework designed to achieve this. [ABSTRACT FROM AUTHOR]

Information about traditional end-of-life care customs was gathered from Māori New Zealanders. How health and palliative care services helped or hindered families to use their customs within different health care settings was also examined. The use of the digital story-telling method to create personalised short videos is reported on in this paper. Kaupapa Māori Research and social constructivist methods were employed to conduct face-to-face interviews with 61 Māori families (including someone with a life limiting illness), plant medicine healers, spiritual practitioners and health and palliative care providers. Of these, sixteen family representatives participated in a digital story telling workshop. A Kaupapa Māori thematic analysis confirmed earlier findings that the digital storytelling method was a useful technique to record Māori traditional caregiving customs. Subject material aligned with four dominant themes; (1) 'whānau manaaki', where the mana (value, prestige, authority) of family was given visibility and was celebrated; (2) the 'importance of wairuatanga' provided insight into the place of Māori spirituality, (3) the 'importance of rongoā rākau' highlighted the role of traditional plant medicines; and (4) the 'cultural support provided by health professionals' reflected the care values health and palliative Q3 care professionals should ideally adopt. [ABSTRACT FROM AUTHOR]

Background: Given the increasing emphasis on community-based provision of palliative care and the view that good dying should occur at home, it is unsurprising that policy in many countries has started focusing on preventing hospital admissions at the end of life. However, little attention has been paid to the role of the emergency department (ED) in this regard, despite the fact that a high proportion of hospital admissions among patients with palliative care needs originate in the ED. This paper presents the next logical step in improving understanding of ED use within a palliative care context; as to determine what constitutes an avoidable ED presentation initially requires recognition of the reasons that such patients are presenting. Methods: A systematic, narrative approach was used to appraise the relevant studies. From August to December 2014, electronic databases, gray literature and guidelines were searched, using MeSH headings and keywords. As it was anticipated that reasons for presentation would be differently described, all papers addressing presentations to the ED among patients with palliative care needs were identified; information regarding reasons for presentation were then examined. Results: Twelve papers ultimately met the inclusion criteria and were accessible. The ‘reason’ for a patient's presentation was largely defined as their ‘presenting complaint’ or ‘underlying diagnosis.’ There was consistency in the studies in this respect; the majority found that people with lung cancer and those experiencing distressing respiratory symptoms were most likely the present to the ED. Subsequently, pain and gastrointestinal symptoms such as nausea and vomiting were uniformly found to be most common. The three prospective studies gathered information about reason for presentation from the patient perspective using structured questionnaires, but no study collected qualitative data from patients and families. Discussion: This systematic narrative review is the first to explore reasons for ED presentation among patients with palliative care needs. However, the data does not facilitate a detailed discussion about the difficulties that this population of patients face, and whether they may be best managed in an acute or community setting. A deep understanding of the perspectives of patients is urgently needed, so as to both understand their reasons for presentation and implement relevant patient-directed changes in service provision. [ABSTRACT FROM PUBLISHER]

This paper reflects on the adaptation of the World Café concept to engage with members of the public in Compassionate Communities Café Conversation, focussing on enabling people to understand the importance of thinking and talking about the end of life. The approach enables people to come together to share their experience and ideas, wisdom, worries, and wishes. The seven design principles of the World Café are central to the process, together with the sharing of resources developed to engage people in discussion as well as practical activity. This paper outlines the preparation, presentation, and pilot evaluation of the Compassionate Communities Café Conversation experience in two towns in the Mid-West of Ireland. The experience and findings suggest that this approach offers a potentially very useful framework for use by others as part of a health promoting approach to palliative care. [ABSTRACT FROM AUTHOR]

Introduction: Public health approaches offer the opportunity to move beyond clinical and health services approaches to end-of-life (EoL) care, to focus on whole populations, individuals and communities rather than patients and carers. They also allow concepts such as capacity, resilience, and wellbeing to come to the fore. Methods: This paper, drawing on the experience of a diverse group of academics and practitioners from three countries in Europe, considers the research challenges related to examining new public health approaches to EoL care and how learning from more traditional or classic public health research can influence a future research agenda. Additional opportunities provided by the new public health approach to broaden learning and participation in research are considered. Results: By bringing together strong traditional methods such as analysis of longitudinal population-level data with participatory approaches that draw on communities' experience and aspirations for care, the authors suggest that new and improved opportunities exist to evaluate the impact of participatory approaches. Discussion: In conclusion, the paper urges researchers from classic and new public health to work in partnership to generate and respond to the emerging research agenda around new public health initiatives. There is much to be learned from both. [ABSTRACT FROM AUTHOR]

The IMPACT (Improving the Management of Patients with Advanced Colorectal Tumours) initiative was established by the Association of Coloproctology of Great Britain and Ireland in 2017 as a consortium of surgeons (colorectal, hepatobiliary, thoracic), oncologists, radiologists, pathologists, palliative care physicians, patients, carers and charity stakeholders who will work together to improve outcomes in patients with advanced and metastatic colorectal cancer. To establish this initiative, better information is required to establish how further intervention is focused. This paper details the approaches used, and outcomes generated, from a priority setting exercise to inform the design of the IMPACT initiative. A mixed method approach was employed to set the priorities of patients, clinicians and other key stakeholders in the delivery of optimal care. This consisted of two patient centered consultation events and a questionnaire. A total of 128 participants took part in the consultation exercise; 15 patients, 5 carers/family members, 5 charity representatives and 113 healthcare professionals. Nine key themes for focus were identified, these were: current service provision, specialist services, communication, education, access to care, definitions and standardisation, research and audit, outcome measures, and funding of specialist care. These future priorities will be developed with collaborative engagement in a systematic manner to produce an overall cohesive programme which will deliver a sustainable and efficient clinical and academic service to improving the management of patients with advanced colorectal tumours. [ABSTRACT FROM AUTHOR]

There is a significant gap in the provision of palliative care for children living with HIV (CLHIV) in Indonesia. While Indonesia has one of the highest rates of HIV infection amongst children in Asia, there is limited availability and access to palliative care services for CLHIV, especially for those living in rural areas. This paper highlights the need to scale up the provision of pediatric palliative care services for CLHIV in the country through the integration of palliative care into existing HIV care. This integration would not only increase the accessibility of palliative care for CLHIV, but also improve the quality of HIV care by addressing and meeting individual needs, enhancing retention in HIV care and improving quality of life amongst CLHIV. An effective integration of palliative care may be achieved by adopting World Health Organization's Public Health Strategy for Palliative Care, with adaptations made to accommodate the unique geographical and cultural contexts of Indonesia. [ABSTRACT FROM AUTHOR]

For patients with chronic, life-limiting illnesses, admission to the intensive care unit (ICU) near the end of life might not improve patient outcomes or be consistent with patient and family values, goals, and preferences. In this context, advance care planning and palliative care interventions designed to clarify patients' values, goals, and preferences have the potential to reduce provision of high-intensity interventions that are unwanted or non-beneficial. In this Series paper, we have assessed interventions that are effective at helping patients with chronic, life-limiting illnesses to avoid an unwanted ICU admission. The evidence found was largely from observational studies, with considerable heterogeneity in populations, methods, and types of interventions. Results from randomised trials of interventions to improve communication about goals of care are scarce, of variable quality, and mixed. Although observational studies show that advance care planning and palliative care interventions are associated with a reduced number of ICU admissions at the end of life, causality has not been well established. Using the available evidence we suggest recommendations to help to avoid ICU admission when it does not align with patient and family values, goals, and preferences and conclude with future directions for research. [ABSTRACT FROM AUTHOR]

Good primary care improves the health and wealth of nations, as it is the context in which the majority of health care is delivered. Improving the quality of palliative care and reducing adverse patient-related events are priority areas for improvement in primary care. One aspect that community nurses can improve is the quality of end-of-life skin care. Given that the main objective of all end-of-life care is to facilitate a comfortable and dignified death for the patient in line with their wishes, it is important for nurses in primary care to be aware of what they can do to ensure the consistent delivery of safe end-of-life skin care. This paper highlights key elements of end-of-life skin care that should be considered by community nurses in their efforts to improve the prevention of pressure ulcers in primary care. [ABSTRACT FROM AUTHOR]

As scientific understanding of the heritable aspects of cancer deepens, the need to effectively communicate genetic information within the families of cancer patients becomes more acute. In the palliative care context, the question of when and how to disclose a patient's genetic information raises a host of ethical, legal, and social issues, including the challenges of communicating during the end-of-life stage and complex familial and cultural dynamics. In this paper, the authors outline the legal components of these issues in three civil law jurisdictions with similarly comprehensive approaches to healthcare and palliative care - Quebec, Belgium, and France - and provide insights from bioethics literature and normative documents on the disclosure of genetic information at the end of life. From this research, the authors propose a strategy for palliative care providers who are considering available options to communicate hereditary health information. [ABSTRACT FROM AUTHOR]

Introduction Research in palliative care (PC) is often regarded as challenging due to the vulnerability of the population and other peculiarities. We aim to systematically identify barriers to research in PC in the literature. Methods The electronic databases CINAHL, MEDLINE were searched for papers published in the last 25 years. Citations and then abstracts were screened for inclusion. Original papers were included on first-level analysis. On a second level reviews, reports, and position papers were analyzed. Papers containing a direct patient report were specifically analyzed. Barriers were categorized (ethical considerations, financial and time expenses, study design and methodology, human resources and politics) and results quantified. Results Twenty-one original papers and 65 other papers were included. Five studies involved patients directly, five were systematic reviews, three were study experiences, and seven were surveys or workshop reports. Most papers originated from UK, USA, or Norwegian Universities. Ethics and methods were the most often mentioned categories on both levels. Accrual, attrition, and gatekeeping were frequently named barriers. Complex invasive studies or possible side effects hinder patients' participation, as patients are often willing to participate for altruistic motivations. Discussion Barriers to PC research are ethical concerns and methodological challenges. Possible strategies to overcome methodological barriers include international collaborative efforts to include more patients and improve study designs. Ethical barriers indicate the need for patient involvement in the research development process and tailoring research specifically to the PC population. [ABSTRACT FROM AUTHOR]

In this paper, we discuss surgical palliative care for patients with cancer through the lens of frailty and the preoperative context. Historically, palliative care principles such as complex symptom management, high-risk decision-making and communication have played an important role in preoperative discussions of oncologic surgery for both palliative and curative intent. There is increasing motivation among surgeons to integrate palliative care into the perioperative period in order to more effectively and comprehensively address potential adverse functional and quality of life outcomes. We discuss how the concept of frailty, and various instruments to measure frailty, have impacted perioperative decision-making, review the roots of surgical risk stratification and counseling on acceptable perioperative risk, and explore the preoperative setting as a possible avenue by which primary and specialty palliative care integration may have beneficial impact for patients considering oncologic resections. [ABSTRACT FROM AUTHOR]

Specialist palliative care provides additional support to facilitate living well with a serious illness, like cancer, even while pursuing disease-directed therapy. For patients with hematologic malignancies, integrated specialist palliative care improves symptom burden, mood, and quality of life, with benefits even extending to caregivers. Despite this, patients with hematologic malignancies continue to have significant unmet palliative care needs and typically access palliative care late in their disease trajectories, if at all. In this paper, we will define specialist palliative care and review its benefits for patients with hematologic malignancies. We will discuss the unmet palliative care needs of this patient population and the barriers to integrating palliative care and oncologic care. Finally, we will explore innovations and areas of future research to enhance and optimize palliative care integration into usual cancer care treatment for patients with hematologic malignancies. We will explore the importance of ongoing clinical trials that are examining the correct "dose" of palliative care; the use of technology and telehealth; and the use of novel treatments for this patient population. Together, we will consider innovative avenues to provide palliative care to patients with hematologic malignancies and their caregivers. [ABSTRACT FROM AUTHOR]

Background Palliative care and rehabilitation both aim to support patients to live as actively as possible. Goal setting has been identified in health policy and clinical guidelines as a mechanism to achieve this. While goal setting is well established in traditional rehabilitation, it is unclear how it should be implemented within palliative care where people are faced with diminishing abilities. Aim To identify and synthesize published literature regarding goal setting in palliative care. Method Electronic searches were carried out on MEDLINE, PSYCHINFO, EMBASE, CINAHL, ASSIA, and Google Scholar databases between November 2010 and January 2011. Papers were included if they focused on patient-centred goal setting in palliative care. No restrictions were placed on study design or type of paper. Papers were classified according to the type and design and research papers were quality appraised. Papers were read and analysed using framework analysis. Findings Sixteen papers met the inclusion criteria. Three themes were identified: 1. Definitions, process, and functions of goal setting; 2. The challenges of delivering goal setting; 3. Theories underpinning goal setting. Conclusions Goal setting is recognized as an important component of patient-centred palliative care, but there is no agreement regarding 'best practice' and clinicians face particular challenges when trying to set goals with patients in this context. Little attention has been paid to developing a robust, theory-based approach to goal setting in this setting. Hope theory and theories of how people adapt to life-threatening illness could inform the process of goal setting in palliative care. [ABSTRACT FROM AUTHOR]

There is a cost to persons who counsel or work with individuals who are ill, dying, or bereaved. Frequently, they can experience grief reactions that can negatively affect a personal sense of well-being, and relationships with others both within and outside of their workplace. This paper explores the phenomenon of carer grief. The paper also identifies strategies - both individual and organizational - that assist carers in coping with the experience of grief. [ABSTRACT FROM AUTHOR]

Abstract Nursing assistants are the largest aged care workforce providing direct care to older people in residential aged care facilities (RACF) in Australia and internationally. A palliative approach is a large component of this direct care that necessitates nursing assistants possess requisite knowledge, skills and attitudes. While training needs have been identified to enhance their practices, preservice education is variable, educational interventions have been adhoc and professional development found to be inadequate to the demands of the workplace. In addition, evaluation of nursing assistants' knowledge, skills and attitudes has lacked an instrument specifically tailored to nursing assistants' level of education and role responsibilities when providing a palliative approach. This paper reports on Phase 3 of a research study to develop such an instrument capable of assessing nursing assistants' knowledge of, skills in, and attitudes within a palliative approach. This phase assesses the usability and performance capabilities of the new instrument on a purposive sample of nursing assistants in two RACFs using the survey method. Results showed that the instrument was able to discriminate between groups of nursing assistants based on experience in role. Usability results indicated that the instrument is user friendly and time efficient. [ABSTRACT FROM AUTHOR]

Palliative care is aimed at reducing the physical, mental, social and spiritual pain of the critically ill patients irrespective of the diagnosis. Dermatologists are rarely involved in palliative works currently, but recent literature demands an active involvement. In this paper, we tried to review literature linking palliative care and dermatology. We also attempted to define the need and scope of palliative dermatology as a subspecialty of palliative care. Policymakers of palliative medicine should seriously consider the role of dermatologists in the team and a dermatologist may avail basic training in palliative care as it may aid them to address certain clinical situations in a better way. [ABSTRACT FROM AUTHOR]

Long-term oxygen therapy (LTOT) at home has been demonstrated to improve survival in patients with COPD and severe resting hypoxemia. Support for LTOT is based on 2 landmark trials published nearly 4 decades ago. These results form the basis for reimbursement and prescription of LTOT to this day. Recent work has demonstrated no outcome benefit of LTOT in stable COPD patients with moderate desaturation at rest or during activity. Oxygen therapy during activity and exercise has been shown to alleviate symptoms and maintain arterial oxygen saturation, but not improve long-term outcomes. Oxygen therapy in COPD has a number of physiologic, functional, and biologic effects, not all of which are completely understood. Oxygen therapy in exacerbations of COPD can be both helpful and harmful. New guidance on the use of oxygen therapy during pre-hospital care has been published in the United Kingdom. Technology for LTOT represents a challenge for physicians writing prescriptions, durable medical equipment suppliers, caregivers, and patients. New technology for automated control of LTOT shows promise but is hampered by regulatory processes and cost pressures. Recent changes in government reimbursement for home oxygen therapy also present challenges. This paper will review the current evidence regarding LTOT in COPD and the impact on mortality and functional outcomes as well as reviewing technological challenges. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this paper is to determine the cost effectiveness of palliative care on patients in a home health and hospice setting. Secondary data set was utilized to test the hypotheses of this study. Home health care and hospice care services have the potential to avert hospital admissions in patients requiring palliative care, which significantly affects medicare spending. With the aging population, it has become evident that demand of palliative care will increase four-fold. It was determined that current spending on end-of-life care is radically emptying medicare funds and fiscally weakening numerous families who have patients under palliative care during life-threatening illnesses. The study found that a majority of people registering for palliative and hospice care settings are above the age group of 55 years old. Design/methodology/approach: Different variables like length of stay, mode of payment and disease diagnosis were used to filter the available data set. Secondary data were utilized to test the hypothesis of this study. There are very few studies on hospice and palliative care services and no study focuses on the cost associated with this care. Since a very large number of the USA, population is turning 65 and over, it is very important to analyze the cost of care for palliative and hospice care. For the purpose of this analysis, data were utilized from the National Home and Hospice Care Survey (NHHCS), which has been conducted periodically by the Centers for Disease Control and Prevention's National Center for Health Statistics. Descriptive statistics, χ² tests and t-tests were used to test for statistical significance at the p<0.05 level. Findings: The Statistical Package for Social Sciences (SPSS) was utilized for this result. H1 predicted that patients in the age group of 65 years and up have the highest utilization of home and hospice care. This study examined various demographic variables in hospice and home health care which may help to evaluate the cost of care and the modes of payments. This section of the result presents the descriptive analysis of dependent, independent and covariate variables that provide the overall national estimates on differences in use of home and hospice care in various age groups and sex. Research limitations/implications: The data set used was from the 2007 NHHCS survey, no data have been collected thereafter, and therefore, gap in data analysis may give inaccurate findings. To compensate for this gap in the data set, recent studies were reviewed which analyzed cost in palliative care in the USA. There has been a lack of evidence to prove the cost savings and improved quality of life in palliative/hospice care. There is a need for new research on the various cost factors affecting palliative care services as well as considering the quality of life. Although, it is evident that palliative care treatment is less expensive as compared to the regular care, since it eliminates the direct hospitalization cost, but there is inadequate research to prove that it improves the quality of life. A detailed research is required considering the additional cost incurred in palliative/hospice care services and a cost-benefit analysis of the same. Practical implications: While various studies reporting information applicable to the expenses and effect of family caregiving toward the end-of-life were distinguished, none of the previous research discussed this issue as their central focus. Most studies addressed more extensive financial effect of palliative and end-of-life care, including expenses borne by the patients themselves, the medicinal services framework and safety net providers or beneficent/willful suppliers. This shows a significant hole in the current writing. Social implications: With the aging population, it has become evident that demand of palliative/hospice care will increase four-fold. The NHHCS have stopped keeping track of the palliative care requirements after 2007, which has a negative impact on the growing needs. Cost analysis can only be performed by analyzing existing data. This review has recognized a huge niche in the evidence base with respect to the cost cares of giving care and supporting a relative inside a palliative/hospice care setting. Originality/value: The study exhibited that cost diminishments in aggressive medications can take care of the expenses of palliative/hospice care services. The issue of evaluating result in such a physically measurable way is complicated by the impalpable nature of large portions of the individual components of outcome. Although physical and mental well-being can be evaluated to a certain degree, it is significantly more difficult to gauge in a quantifiable way, the social and profound measurements of care that help fundamentally to general quality of care. [ABSTRACT FROM AUTHOR]

Integration of palliative care (PC) in oncology requires changes in delivery and processes of care, such as implementation of comprehensive, evidence-based interdisciplinary plans of care (IPOCs). A multidisciplinary design team partnered with an electronic health record company and an information analytics company that specializes in online clinical practice guidelines. The team sought to develop electronic IPOCs that address the unique needs of oncology inpatients, attend to PC needs, and reflect the interdisciplinary team's contribution to quality patient outcomes. Our cancer center had paper-based care plans that were not well integrated into workflow, did not represent comprehensive PC, did not reflect interdisciplinary care, and did not guide evidence-based practice at point of care. The team designed IPOCs to be incorporated into each discipline's workflow and unique documentation and established clinical decision support tools to suggest appropriate IPOCs. Thirty-five IPOCs were developed and included all domains of quality PC. Evaluation of IPOC use indicated incomplete, but improving, adoption of PC-specific IPOCs with engagement in collaborative care planning by a variety of disciplines and across oncology nursing subspecialties. [ABSTRACT FROM AUTHOR]

At a time when death-and-dying are increasingly thought of as medical events, even to the point where professionals traditionally oriented towards healing are sometimes thought to be responsible for intentionally ending the lives of patients, it is becoming increasingly clear that palliative care is both unique and critically important. In this paper I show the need for clear articulation of the philosophy of this distinctive practice that properly acts with intent towards neither health in a narrowly medical sense nor patient death. I propose four lenses through which a rigorous philosophy of palliative care may be approached: trust, intent, authenticity, and the foundational question of good dying - literally euthanasia. I contend that proper palliative care seeks to cloak ( palliare) pain within the context of trusting relationships both as a good in itself and as way of de-cloaking the things that form important components of most people's narratives of good dying: opportunities to authentically engage with trusted others with the aim of finding some kind of meaning in life and community, even during the process of dying. Furthermore, palliative care is characterized by a non-paternalistic willingness to point outside of itself in order to help patients authentically engage the important existential questions of human mortality via lenses that extend beyond those offered by scientific medicine. [ABSTRACT FROM AUTHOR]

The need for palliative care is growing along with a rapidly aging population. To meet this need, the American Association of Colleges of Nursing developed palliative care competencies that all nurses should achieve before graduation. Many of these competencies rely on direct experience in caring for patients facing serious illness, leading to an increased emphasis on experiential learning in nursing curricula. Experiential learning is the process of creating knowledge through transformative experiences outside the traditional classroom setting. The Comfort Shawl Project is a service learning project that provides senior nursing students with a yearlong immersion in palliative care. Experiential learning activities include attending the interdisciplinary palliative care team meeting, gifting handcrafted shawls to patients, writing reflections, participating in extracurricular events, and sharing the impact of the project through written papers and presentations. The project has been successful in helping nursing students achieve palliative care competencies, including communicating effectively and compassionately with patients and families and recognizing one's own beliefs about serious illness and death. This project addresses the need to achieve primary palliative care competencies for nursing students. Clinical experiences in palliative care are vital to supplementing didactic learning, and this project could be replicated in a variety of academic settings. [ABSTRACT FROM AUTHOR]

Aim: Complex pressure injuries (PI) are a significant worldwide issue for the healthcare system and are prevalent in advanced illness populations. This paper aims to share the holistic management of complex PI in advanced dementia patient to achieve the best outcomes. Method: Mdm T, a 67 years lady with advanced dementia was admitted from a nursing home. She had diabetes mellitus, bullous pemphigoid and multiple pressure injuries. On admission, Mdm T's stage 4 sacral PI measured at 22x14x2cm, undermining 10-1 o'clock 2 cm, bone, ligaments visible with 60% full-thickness necrotic tissue, malodour, and heavy hemopurulent discharge. Scattered of skin erosion over periwound skin. Patient was tachycardia and febrile since one week ago. The goals of wound care manage ongoing infection, malodor, and excessive exudation. Wound bed preparation (TIME concepts) was adopted in wound management after comprehensive wound assessment. The approach of regular wound cleansing with the antimicrobial solution, autolytic debridement, and periodically conservative sharp wound debridement to remove bioburden and non-viable tissue--subsequently, Negative Pressure Wound Therapy initiated for short term to promote cell proliferation and enhance sacral wound contractions. Ciprofloxacin was started after two days on top of Augmentin to treat Pseudomonas infection. Results / Discussion: After 16 days, Mdm T's sacral wound shown vast improvement with 90% of pinkish granulation tissue, nil odour and with wound infection resolved. Mdm T's son feedback that patient shown subjective improvement to be able to interact with him by maintaining eye contact on his visits. Conclusion: It is indeed challenging to manage patient with multiple complex pressure injuries. This case demonstrated with access to specialized wound care nurse in inpatient palliative setting, it helps to improve the wound outcome and QoL for patients. Most importantly, it enhances overall nursing practices on wound management. [ABSTRACT FROM AUTHOR]

This paper presents a new perspective on person-centred care, examining the role hospitality plays in palliative care. Despite a burgeoning, clinically derived and focused evidence-base, the constituent parts of person-centred care in this service ecosystem are not fully understood. An assessment of hospitality and healthcare literature concludes that the contribution of hospitality services to palliative care are seldom appreciated. Systematic stories (n = 239) collected from patients, families, and the bereaved accessed via five hospices, a hospital-based Palliative Care Unit, and a general hospital, geographically dispersed around the UK, are examined through the application of a storytelling tool designed to capture the transitional nature of service experiences. Hospitality services are found to play a profound role in care at this lifestage. They are integral to a person-centred care model which ascends through knowledge, emotions, amenities, social, and holistic steps over time. Research limitations and opportunities for future research are detailed. • Hospitality services play a profound role in palliative care. • Hospitality services contribute to dignity, compassion and respect. • A service ecosystems lens is a useful means of organising knowledge. • Knowledge, emotions, amenities, social, and holistic are dominant themes. [ABSTRACT FROM AUTHOR]

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Introduction. Palliative care is associated with life-threatening diseases and especially the last phase between life and death - end-of-life. Although noted, the emotion, trauma, despair and physical deterioration of this phase are not fully acknowledged in information behaviour and health care literature. Patients' and families' unmet information needs and frustrations remain of concern. Method. To deepen understanding of the complexity of information behaviour in palliative care and identification of information needs not recognised and/or not expressed, the paper advocates exploring (identifying and labelling) diverse and multiple contexts in palliative care that have been noted from the literature reporting on information behaviour in palliative care, as well as palliative care per se. Analysis. An exploratory information behaviour model depicting diverse contexts in palliative care is used to direct brief discussions of the contexts of informing, awareness, location of disease and disease trajectory, pain, support and social networks, and location of care, as examples of such contexts. The paper focuses on patients. Conclusions. Considering diverse, multiple, overlapping contexts in relation to palliative care and information behaviour might contribute to identifying dormant and unexpressed information needs, and deepening understanding of the complexity and diversity of information behaviour. A wider spectrum of contexts might be noted through further in-depth content analysis of the literature on palliative care and related issues to direct further research. The paper reports on work in progress. [ABSTRACT FROM AUTHOR]

The newborn intensive care unit (NICU) is often a setting for end-of-life care. While previous publications acknowledge the role that spirituality may play in pediatric end-of-life care, how these beliefs and values can affect the process of decision-making by parents, relations between clinicians and families, and perceptions among team members, may not, as yet, be well understood. This paper uses a complex case to explore the role of spirituality in end-of-life decision-making in the NICU setting. The case presentation involves a 34-week gestation African American infant (called Angela in the paper) with congenitally acquired cytomegalovirus. After several weeks of clinical improvement, Angela's condition deteriorated, necessitating end-of-life decision-making. Angela's parents' religious beliefs and values became central to all subsequent family decision-making pertaining to Angela's care. Understanding these beliefs and values, and the extent to which they could be accommodated given Angela's prognosis, was essential, yet challenging, for Angela's care team. Issues including religious objection to life-limiting treatment, family-team communication, surrogate decision-making, and moral distress of health care team members are discussed. The analysis of this case aims to help clinicians involved in end-of-life care in the NICU setting respond to families' spirituality in ways that promote ethical care, facilitate family decision-making, and reduce the potential for moral distress among clinicians. [ABSTRACT FROM AUTHOR]