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Our group developed an interprofessional education (IPE) program for home-based end-of-life (EOL) care among health and welfare professionals, with the purpose of understanding professional roles in EOL care and promoting mutual respect among team members. This study aimed to verify the understanding and awareness of the elements of IPE. Seven districts in a city in Japan were cluster-randomized into an education group or a control group. A questionnaire survey using original items to evaluate two purposes of the IPE program was conducted before the IPE workshop and seven months later. In total, 291 professionals participated in the study: 64 homecare nurses, 129 care managers, and 98 head care workers. Care managers and care workers in the education group significantly understood their own and other professional roles in EOL care (p=.01, p <.0001, respectively) and gained confidence in collaboration among health and welfare professionals (p =.02, p <.0001, respectively). Care workers in the education group felt respect for team members (p =.02). For homecare nurses, no significant effects were observed. The IPE was more effective for welfare professionals who had difficulty cooperating in end-of-life care. [ABSTRACT FROM AUTHOR]

As a result of the ageing prison population, it is anticipated that there will be a steady increase in individuals living in prison requiring access to End of Life (EoL) care in coming years. Research in this area is limited, despite it being concern of policy makers for several years. This paper aims to explore current EoL care provision in prison via nominal group methodology, to identify what forms of care have been implemented, what provision needs to be developed, and how might this be achieved. Ten professionals were recruited to a nominal group discussion and four themes were identified: 1) ‘Consistent Family Input’; 2) ‘Staffing’; 3) ‘Ensuring Best Practice’; and 4) ‘Person-Centred Assessment’. There was consensus that care pathways are currently in place for older prisoners diagnosed with a life limiting disease; however, the consistency of services is variable. Policy makers should consider the development of a national prison EoL strategy which embeds current good areas of practice whilst promoting equitable care delivery using multi-agency networks across the prison estate. [ABSTRACT FROM AUTHOR]

In Canada, most people prefer to die at home. However, the proportion of deaths that occur in hospital has increased over time. This study examined mortality rates and proportionate mortality in Innu communities in Labrador, and compared patterns to other communities in Labrador and Newfoundland. We conducted a cross-sectional ecological study with mortality data from the vital statistics system. This included information about all deaths in Newfoundland and Labrador from 1993 to 2018. We used descriptive statistics and rates to examine patterns by age, sex, cause and location. During the 2003 to 2018 period the leading cause of death in the Innu communities (excluding external causes) was cancer, followed by circulatory disease and respiratory disease. Between 1993 and 2018, there was a lower percentage of hospital deaths and a higher percentage of at home deaths in Innu communities than in the rest of the province. The majority of deaths among Innu were due to cancer and chronic diseases. We found a higher percentage of at home deaths in Innu communities compared to the rest of the province. [ABSTRACT FROM AUTHOR]

With a rapidly aging population, Canada has a growing need for public health palliative care services. End of life care, including palliative care, is holistic in nature, paying attention to the physical, psychological, social-cultural, and spiritual needs of the person who is dying and their networks of friends, family, and caregivers. Public health approaches to palliative care work to strengthen community capacities to provide care in tandem with medical and social services. This study reports on the findings of the Healthy End of Life Project (HELP Ottawa), a 4.5-year community-based research project, to demonstrate the importance of including faith communities in public health palliative care initiatives. Focusing on Christian faith communities, this article explores how faith communities can best build the capacity to offer, ask for, and accept support for members who are living with advanced illness, caregiving, or grieving. [ABSTRACT FROM AUTHOR]

Over the second half of the twentieth century, advances in medicine enabled treatment of previously life-ending illnesses. The resulting shift in place of care for mortally sick people from home to hospital succeeded in preventing many premature deaths, yet it also caused the public to lose familiarity with the process of 'ordinary dying.' The loss of public understanding of dying has resulted in avoidance of conversations about dying, in failure to anticipate and plan ahead, and in avoidable distress as deathbed companions misinterpret features of the dying process as suffering. This opinion piece reflects on the need for health and care workers to understand, recognise and talk about the process of dying, the better to prepare and support the elderly and sick people in our care and their companions. [ABSTRACT FROM AUTHOR]

A crucial part of theory-driven realist thinking is retroduction, the process of looking backwards for explanation of how and why things may be. Conducted early in the realist evaluation process, it provides a foundation for evidenced 'theory gleaning'. Despite retroduction being an inherent part of the realist process, it is often 'hidden' in realist reports. This paper explains the thinking behind, alongside an example of, a framework created by the authors to make transparent the retroductive process as used in a realist evaluation of two community End of Life Care services. The approach makes visible the application of the 'sociological imagination' and lends robustness to hypotheses by establishing how the authors utilised: wide-ranging potential generative causation; stakeholder and Patient and Public Involvement feedback; literature scoping; and substantive theories at the middle range, specifically Transitions Theory. These stages led to the development of Initial Programme Theories, with a clear history of genesis. [ABSTRACT FROM AUTHOR]

Preparing for death and making arrangements for end of life care has always been a part of our lives, regardless of however taboo it has seemed. During a global pandemic, have we been forced to see things differently? Death in general is a subject we tend to avoid talking about as a society. However, with the pandemic claiming millions of lives worldwide, can we really avoid discussing it any longer? People of all ages were affected, and countless people unexpectedly lost their loved ones. When thinking of terms such as a 'good death' or 'end of life care', we typically associate these phrases with the terminally ill or the elderly. With the aftermath of the pandemic, we have been faced with the reality that many people affected by Coronavirus were also in great need of palliative care. For many affected by the virus, a good death was a luxury as opposed to the necessity it should be. With the pandemic still ongoing, an important lesson for us to learn is that our negative notions of death need to change, if we are to truly value life. [ABSTRACT FROM AUTHOR]

Advance Care Planning (ACP) is widely regarded as a component of good end-of-life care. However, findings from a qualitative international study of patient and family caregiver attitudes and preferences regarding ACP highlight participants' ambivalence towards confronting the future and the factors underlying their motivation to accept or defer anticipatory planning. They show how ACP impacts on, and can be determined by, relationships between patients and their family caregivers. Although some patients may welcome the chance to engage in ACP a tendency towards either therapeutic optimism or fatalism can limit its perceived appeal or benefit. The focus on individual autonomy as an ethical principle underlying ACP does not resonate with real world settings. Many patients naturally orient to share responsibility and decision making within the network of significant others in which they are embedded, rather than exert unfettered freedom of 'choice'. [ABSTRACT FROM AUTHOR]

Abstract The increase in the number of people developing dementia, the growing number of geriatric patients suffering and dying from serious chronic diseases, and the rising costs of health care as a result of an aging population have centered attention on advance care planning. Advance care planning is the recurrent conversation between competent patients, their families, and the health care provider about end of life care. Although vital, advance care planning discussions between providers and patients are not occurring regularly, and completion rates of advance directives are low. Barriers to health care providers discussing advance directives include lack of time, knowledge, and confidence. The purpose of this project was to evaluate the effectiveness of an educational program regarding advance directives on nurse practitioner’s competency and confidence to start advance care planning discussions. Wilcoxon signed rank test indicated that post-education, confidence improved significantly for all items (average rank of 4.5 vs average rank of 10.65). The study showed that most of the nurse practitioners were knowledgeable about advance directives and the educational program increased their level of confidence about initiating advance directive discussions. [ABSTRACT FROM AUTHOR]

The important role of palliative care in the management of end stage liver disease is now well established, but a number of barriers related to physicians and patients may still impede timely referral. In this article, an anonymised patient's clinical course is described, one which ends in what most would regard as a 'bad death'. This despite the fact that his history clearly indicated a poor prognosis. The reasons behind the clinical decision to escalate care are explored in light of current evidence. These include increasing optimism around the utility of organ support, lack of consensus around use of prognostic scores, examples of liberal approaches to transplantation for alcoholic hepatitis and acute-on-chronic liver disease, the transplant imperative, and patient preference. A case is made that if a patient has expressed a clear preference to pursue life-sustaining treatment, there will be occasions where a 'bad death' is morally acceptable. It is concluded that palliative care should be integral to the care of patients with advanced liver disease, but that hepatologists should be upskilled and become more comfortable around clinical uncertainty. [ABSTRACT FROM AUTHOR]

This article presents VoicingHan project as a new form of life-review mediated by digital avatars promoting the reconstruction of self and identity through performativity. Whereas traditional life-review uses interview as primary means of the therapeutic process, VoicingHan is mediated by virtual bodies with self-guided participation in one's own life stories through embodied storytelling performance. VoicingHan enrolled 12-patients receiving outpatient palliative care at VCU Massey cancer center. The storytelling performances were recorded via avatar video format and distributed to participants for review and/or sharing. The present study considered the avatar videos as qualitative data emerging from these individually constructed life review narratives. In this article, the benefits of VoicngHan life-review were demonstrated by analyzing the avatar video narratives, based on theoretical and developmental frameworks. Through the lens of Social Constructivism, this qualitative study deepens our understanding of human-avatar interactions to engage life review process, within the liminal space of life-threatening illnesses. [ABSTRACT FROM AUTHOR]

Given the ethnic/racial disparities in end-of-life care, this study aimed to describe and identify factors affecting engagement in three types of advance care planning including informal talk, living will, and durable power of attorney for health care among ethnic/racial minority older adults. Living will refers to any written instruction about medical treatments at the end-of-life while durable power of attorney for health care allows someone to make a health care decision when an individual is incapable of making a reasoned decision. We used a subset of racial/ethnic minority groups drawn from the second wave of the National Health Aging and Trends Survey (n = 543) collected in 2012. The descriptive result showed that informal talk (60%) happened most followed by durable power of attorney for health care (30%) and living will (26.5%) completion. Multivariate logistic regression analyses found that higher education and lower preference toward life-sustaining treatment were associated with engagement in all three types of advance care planning. Having multimorbidity and U.S. born were associated with having informal talk. Non-Hispanic others were more likely to have informal talk and complete durable power of attoreny for health care to compared to Blacks. Furthermore, married older adults were more likely to complete living wills compared to those separated/divorced or never married. Our findings about different factors affecting engagement in advance care planning indicate that we may need targeted approaches to promote each type of advance care planning for ethnic/racial minority older adults. [ABSTRACT FROM AUTHOR]

Background and Aim: People with severe mental illness (SMI) have a life expectancy of up to twenty years less than the general population and many live with incurable physical health conditions. Yet, they continue to experience barriers when trying to access palliative and end of life care (PEOLC). Little research has been carried out which includes the views and experiences of people with SMI, and this study presents first findings which include people with both SMI and an incurable condition and their carers. It aimed to seek their views, and those of their carers, on their experiences and expectations of accessing PEOLC and to understand how PEOLC for people with SMI could be improved. Methods: Semi-structured interviews were carried out with 8 participants (5 patient participants and 3 carer participants). Thematic analysis of the interview transcripts was undertaken. Findings: Four over-arching themes were developed. (1) Stigma and Prejudice – See Me, Not My Diagnosis (2) Hesitancy and Avoidance – Treading on Eggshells (3) Collaborators in Care – The Ignored Experts and (4) Connections – Leaning in, Not Stepping Back. Significance of Findings: This study presents the first accounts from the UK concerning experiences of PEOLC, barriers to access and how care can be improved, from the perspectives of patients with both a SMI and an incurable physical condition and their carers. The findings illuminate an under-researched area of clinical practice and contribute rich understandings to future service developments and innovations. [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]

When it is ethically justifiable to stop medical treatment? For many Muslim patients, families, and clinicians this ethical question remains a challenging one as Islamic ethico-legal guidance on such matters remains scattered and difficult to interpret. In light of this gap, we conducted a systematic literature review to aggregate rulings from Islamic jurists and juridical councils on whether, and when, it is permitted to withdraw and/or withhold life-sustaining care. A total of 16 fatwās were found, 8 of which were single-author rulings, and 8 represented the collective view of a juridical council. The fatwās are similar in that nearly all judge that Islamic law, provided certain conditions are met, permits abstaining from life-sustaining treatment. Notably, the justifying conditions appear to rely on physician assessment of the clinical prognosis. The fatwās differ when it comes to what conditions justify withdrawing or withholding life- sustaining care. Our analyses suggest that while notions of futility greatly impact the bioethical discourse regarding with holding and/or withdrawal of treatment, the conceptualization of futility lacks nuance. Therefore, clinicians, Islamic jurists, and bioethicists need to come together in order to unify a conception of medical futility and relate it to the ethics of withholding and/or withdrawal of treatment. [ABSTRACT FROM AUTHOR]

New approaches are needed to assist residential aged care (RAC) staff increase their skills and confidence in identifying when residents are nearing the dying phase and managing symptoms. One new evidence-based approach to improve palliative and end-of-life care in RAC is outreach Specialist Palliative Care Needs Rounds (monthly triage and risk stratification meetings – hereafter Needs Rounds); as yet untried in rural settings which may face unique enablers or challenges. Needs Rounds were introduced into two RAC facilities in the rural Snowy Monaro region of New South Wales, Australia. This study explored staff and general practitioners'(GPs') experiences and perceptions of palliative and end-of-life care in rural RAC, and staff confidence and capability in providing such care, prior to, and after the introduction of Needs Rounds. A mixed-methods, pre- and post-intervention approach was taken, utilizing a Likert-scale written questionnaire and face-to-face semi-structured interviews. Between March and November 2018, 61 questionnaires were completed by 48 RAC staff (33 pre-, 28 post-intervention); eight staff and three GPs were interviewed. Despite system and site-specific barriers, staff self-reported that Needs Rounds increased their capability in providing end-of-life care (p = 0.04; 95% CI 0.20–7.66), and improved staff: (1) awareness of end of life, reflective practice, and critical thinking; (2) end-of-life decision making and planning; and (3) pain management. Needs Rounds are acceptable and feasible in rural RAC. Palliative and end-of-life care for residents may be improved through education, collaboration, communication, and planning. Further studies should explore running Needs Rounds via telehealth and/or utilizing a multidisciplinary approach. [ABSTRACT FROM AUTHOR]

Issue: Medical assistance in dying (MAID) became legal in Quebec on December 10, 2015, and in the rest of Canada on June 17, 2016. This enabled 6,749 deaths through physician-assisted suicide or euthanasia between December 10, 2015 and October 31, 2018. While the death of a patient is a common experience for medical trainees, those that occur through MAID have unique features related to the methods, the timeline, the intended role of the physician in causing the death, and the request of the patient that initiates the process. These aspects necessitate a distinct approach to MAID medical education. Evidence: Despite the legalization of MAID in a growing number of jurisdictions, there is virtually no literature to guide MAID education in clinical practice. The cumulative evidence regarding the impact of patient death on medical students, residents, and attending physicians suggests a need for supported discussion and debriefing to process and reflect on the emotional experiences that follow patient death. This is especially important with MAID, in which there are unique ethical and psychological issues related to the physician's direct role in causing the death of a patient. There is little published research on the impact such deaths have on physicians who provide MAID, or on others who are indirectly involved. However, there is evidence that learners desire MAID-specific education tailored to their unique needs. Didactic education about the medical and legal domains of MAID alone is insufficient to support learners' needs. Experiential case-based learning with supervisory support has the potential to enhance training in end-of-life care in general, and specifically in MAID. The authors' first clinical experience with a patient requesting MAID on an internal medicine clinical teaching unit (CTU) highlighted gaps in their preparedness to meet the associated professional and personal demands. Reflecting on these perceived gaps, and on the needs of learners identified in the literature on patient death and MAID education, the authors created a framework to guide learning at the point of care of a patient requesting MAID. Represented in a MAID Education Cogwheel and discussion guide, this framework specifies learning objectives and methods in six domains: medical, legal, moral, ethical, cultural, and psychosocial. Implications: Following a MAID request, attending physicians can use the framework to guide learners in ongoing conversations addressing these domains. Inter-professional participation can include such disciplines as psychiatry, palliative care, bioethics, pharmacy, nursing, physical and occupational therapy, social work, and spiritual care. Further research is necessary to test this framework to determine its' feasibility, efficacy, and generalizability. [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]

The author presents an in-depth exploration of her work with Grace, an 11-year-old girl dying of liver failure. The experience of terminal illness in childhood is discussed with attention to the ability to cope with multiple losses (e.g., body image, body functions, important objects, a healthy future), the impact of the denial of impending death on the child and her family, the child's use of fantasy as a means to obtain comfort and reduce feelings of loneliness, and the difficulties in the perception of self and other that result from the overwhelming stress of serious illness. Although the author was a pediatric resident at the time, the ability to work therapeutically at the patient's bedside is illustrated, and unique aspects related to interacting with the ill body are discussed. The therapist's ability to enter the experience of dying with the child, to understand both verbal and nonverbal forms of communication, to openly discuss loss and death and to allow the child to elaborate and address fears and fantasies regarding the child's rapidly changing physical self in a developmentally appropriate way are illustrated. The experience of caring for a dying child is explored with a discussion of the range of affects evoked by this work and the centrality of the relationship as a way of both processing and defending against loss for both patient and therapist. [ABSTRACT FROM AUTHOR]

Comparative policy analysis sometimes relies on the use of metrics to foster policy learning. We compare health care for patients at the end of life (EOL) in the US and France. The analysis aims to enable policy makers in both nations to reexamine their own health systems in light of how their counterparts are responding to common concerns about the intensity, quality and cost of EOL care. We find that a higher percentage of French decedents 65 years and over, are hospitalized, yet they spend fewer days in intensive care units (ICUs) than their counterparts for whom data are available (Medicare beneficiaries) in the US. In addition, decedents in the US consult with a higher number of different physicians than their French counterparts. We also compare patterns of hospital use for decedents in EOL care among academic medical centers (AMCs) in the US and France. We find greater variation among French AMCs than among their counterparts in the US. [ABSTRACT FROM AUTHOR]

Objective: To investigate the prevalence of family surrogates' do-not-resuscitate (DNR) intention for patients with dementia (PwD), and factors influencing family surrogates' decisions. Methods: This is a descriptive and cross-sectional study. Patients with dementia and their family surrogates from Dementia Outpatient Clinic of a teaching hospital in southern Taiwan were included. Data were collected using chart review and questionnaire survey. Influential factors were analyzed using multiple logistic regression. Results: One hundred and forty of the 223 participants (62.8%) have intention to sign DNR consents for their dementia relatives. Factors influencing the intention were: (1) Comorbid with musculoskeletal diseases or diabetes (p <.05); (2) psychological symptoms of repetitive wording and behavior (p <.05); (3) spouse (p <.05) and lineal relatives (p <.01); (4) previous discussion between families and patient about DNR directive (p =.001); (5) believers of Taiwan folk belief (Buddhism or Taoism) (p <.05). Conclusions: Advanced dementia patients cannot express intention about their end-of-life care and depend on family surrogates to decide for them. Our study showed that spouse and direct relatives, comorbidities of musculoskeletal disease or diabetes, psychological symptoms of repetitive wording and behavior, previous discussion about patients' intention, and believers of Taiwan folk belief are all positive influencing factors for surrogates to consent DNR directive for patients. Our findings are important in promoting DNR directive for PwD. Clinical implications: Our results may help to promote DNR decisions for dementia patients, especially in Chinese populations. [ABSTRACT FROM AUTHOR]

This paper describes a mixed method survey that was administered to a group of Australian palliative care social workers (n = 27). Specifically, it aimed to investigate the ways that social workers understood and worked with clients who were estranged from family at the end of life. Respondents suggested that estrangement potentially impacted clients emotionally, practically, and existentially. They were challenged to make clear assessments, provide emotional support, encourage news ways of thinking about estrangement, to manage practical issues, work with the client’s family, and monitor their own professional role. Theories and models of intervention and levels of training are also discussed. [ABSTRACT FROM AUTHOR]

It is increasingly recognised that palliative care research needs to pay more attention to culture if the diverse needs of service users are to be appropriately met. However, in most countries research, practice and policy in palliative care remains predicated upon a specific cultural understanding of the ‘good death’, firmly rooted in a Western world view. In this paper we present the formation of a new multi-disciplinary palliative care research group, explicitly set up along bi-cultural lines – The Te Ārai Palliative Care and End of Life Research Group to face challenges of traditional paradigms of palliative care in the specific context of Aotearoa New Zealand (NZ). We outline the rationale for establishing a research group which meets both Māori (indigenous people of NZ) and conventional Western standards for conducting academic research, describe our bi-cultural framework, and provide examples of how it shaped the design of three recently completed projects. We also situate our experience within the wider international literature, identifying transferable lessons for researchers wanting to do palliative care research with indigenous and minority ethnic and cultural groups. [ABSTRACT FROM AUTHOR]

Background: Cyprus is currently forming its public healthcare system aiming to accompany people from cradle to grave. This population-based palliative care service needs assessment was performed under increasing demographic, economic, and societal pressures. Objectives: The primary aim was to assess the palliative care service needs in Cyprus using routine mortality data and this was achieved by: (a) analysis of mortality death registration statistics making inferences to palliative care needs; (b) reviewing existing palliative care service provision in Cyprus. Methods: Data derived from death registrations from January 2011 to December 2013 were analysed using specific International Classification of Diseases and Related Health Problems –10th Revision codes. The method developed by Rosenwax and Murtagh with further refinement of the disease categorisations was used to give a population-based estimate of palliative care needs at a minimum and at a maximum value, combined with symptom prevalence. Results: Out of the 5500 people on average dying in Cyprus annually, a minimum 2634 and a maximum 3927 could benefit from a palliative care service. Palliative care provision in Cyprus today focuses almost exclusively on cancer, depending largely on philanthropic funding with some services being reduced despite evidence of increasing need. Conclusion: Palliative care should be integrated into the public healthcare system with appropriate resource allocation. Recommendations are made to facilitate this. [ABSTRACT FROM AUTHOR]

Pediatric social workers working in acute care hospital settings may care for children and their families in end-of-life circumstances. This qualitative study is part of a larger study focusing on the experiences of health care providers working with dying children. This study consisted of 9 semi-structured interviews of acute care pediatric social workers who work with dying children and their families. Themes included the role of social work with dying children, the impact of their work and coping strategies. Authors suggest a hospital-worker partnership in supporting staff and promotion of supportive resources. [ABSTRACT FROM AUTHOR]

Palliative care, which is a special type of care including alleviation of physical and psychosocial symptoms of individuals with life-limiting serious diseases, has long been neglected in Turkey. This has also affected the activity of social work and social workers in the presentation of health services. In the present study, the present status of social work in palliative care services in Turkey was analyzed. It has also been attempted to explain the historical place of social work in palliative care services from 2002 on under the guidance of the World Health Organization and Ministry of Health. In the present study, an analysis is carried out of stages social work profession went through in social care services, its strong and weak aspects, and its future perspectives. It is thought that the experience gained and accumulation of knowledge in this process as it has occurred in Turkey may serve as guidance for other countries that have only recently started to implement palliative care services, which are evaluated in the context of human rights at present. [ABSTRACT FROM PUBLISHER]

Background: Inuit interpreters are key players in end-of-life (EOL) care for Nunavik patients and families. This emotionally intensive work requires expertise in French, English and Inuit dialects to negotiate linguistic and cultural challenges. Cultural differences among medical institutions and Inuit communities can lead to value conflicts and moral dilemmas as interpreters navigate how best to transmit messages of care at EOL. Objectives: Our goal was to understand the experience of Inuit interpreters in the context of EOL care in Nunavik in order to identify training needs. Design: In the context of a larger ethnographic project on EOL care in Nunavik, we met with 24 current and former interpreters from local health centres and Montreal tertiary care contexts. Data included informal and formal interviews focusing on linguistic resources, experiences concerning EOL care, and suggestions for the development of interpretation training. Results: Inuit working as interpreters in Nunavik are hired to provide multiple services of which interpretation plays only a part. Many have no formal training and have few resources (e.g. visual aids, dictionaries) to draw upon during medical consultations. Given the small size of communities, many interpreters personally know their clients and often feel overwhelmed by moral dilemmas when translating EOL information for patients and families. The concept of moral distress is a helpful lens to make sense of their experience, including personal and professional repercussions. Conclusions: Inuit interpreters in Nunavik are working with little training yet in context with multiple linguistic and cultural challenges. Linguistic and cultural resources and focused training on moral dilemmas unique to circumpolar contexts could contribute to improved work conditions and ultimately to patient care. [ABSTRACT FROM AUTHOR]

Despite numerous studies documenting the benefits of music, hospice social workers are often unfamiliar with evidence-based music practices that may improve end of life care. This mixed method study tested an intervention to teach hospice social workers and chaplains (N = 10) an evidence-based music protocol. Participants used the evidence-based practice (EBP) for 30 days, recording 226 journal entries that described observations of 84 patients and their families. There was a significant increase in EBP knowledge (35%). Prompting behavioral and emotional responses, music was described frequently as a catalyst that facilitated deeper dialogue between patients, families, social workers, and chaplains. [ABSTRACT FROM PUBLISHER]

The Department of Health's End of Life Care Strategy 2008, set out ways for improving people's experience of dying in England and Wales. Hospice and specialist palliative care services were seen as having particular expertise and the strategy envisaged that their model of care should influence care in other generalist settings including social care. Palliative care social workers were identified as having knowledge and skills which could be drawn on to develop the end of life knowledge and skills of their colleagues in non-specialist settings. However, drawing on the ideas of Brown and Walter, 2013, that suggest social work has a pivotal role in remodelling hospice and palliative care, this paper examines their argument. To develop our thinking we have drawn on our experiences of sharing our expertise, through a hospice based, social work led, education and workforce development project for social care staff working in non-specialist settings. [ABSTRACT FROM AUTHOR]

This paper describes research undertaken as part of an MA study in leadership. It draws on interviews with six high profile leaders at the fore front of end of life care sector in the UK. Its findings and emerging themes offer insights about the opportunities for social work leaders in palliative care in the future and how the profession and palliative care sector address current barriers to taking advantage of such opportunity. The main focus of this paper is leadership related to palliative care social work. However, it relates to much broader themes including the history, politics and culture of this profession and the requirements for leadership on the part of social work in the broader contexts of health and social care. [ABSTRACT FROM AUTHOR]

Introduction Oncologists have a central role as 'gate keepers' in terms of referring patients to palliative and hospice care. This role is even more important in countries such as the Czech Republic and Slovakia, where palliative care is still developing. The aim of this study was to assess the associations between self-reported knowledge, attitudes, and behaviour of Czech and Slovak oncologists towards hospice care and their attendance of palliative care training. Methods The method was an anonymous online questionnaire created by the LimeSurvey software. All members of national Oncological Society in the Czech Republic and Slovakia were invited to participate. Eighty-four oncologists completed the survey. Results Czech and Slovak oncologists' attendance of palliative care training is significantly associated with their attitudes and behaviour towards hospice care. Respondents who had any additional palliative care training felt more knowledgeable and were more likely to discuss hospice care with their patients and families than oncologists without such training. Additionally, they also found delivering bad news less difficult and referred more terminal patients to hospice care than those with no training. Conclusion Training in palliative care can influence how oncologists discuss hospice care and refer their patients to such care. This should be reflected in curricula for medical students and in postgraduate education for oncologists and other health care providers, especially in countries with less integrated palliative care such as the Czech Republic or Slovakia. [ABSTRACT FROM AUTHOR]

Objective To examine the views of general practitioners (GPs) on providing a palliative approach in residential aged care and in particular their experiences with the palliative care case conference. Background The national project sought to implement and evaluate a comprehensive evidence-based palliative approach in residential aged care. Methods A purposive sample of 11 GPs across Western Australia (2), South Australia (6) and Queensland (3) participated in face-to face, semi-structured interviews. Qualitative content analysis was used to generate the core categories. Results The evaluation by the GPs of the palliative care case conference in residential aged care is explained through three core themes: people, place, and performance. Understanding what GPs say about the performance or 'doing' a palliative care case conference can purposefully inform practice and policy. What GPs say about the people involved and the place in which they work, namely the residential aged care facility, is provided in Part I of this two part series. Conclusion The views of GPs, on providing a palliative approach in residential aged care facilitates, offer a critical reflection on current practices and systems. [ABSTRACT FROM AUTHOR]

With the advent of antiretroviral therapies, persons living with HIV/AIDS (PLHIVs) are living longer but with increased impairment and care needs. The purpose of this study was to assess whether a vulnerable population of PLHIVs preferred informal versus professional care when unable to care for themselves, and individual and support network factors associated with preference for informal care. The findings have potential implications for facilitating the population's informal care at end of life. Data were from the BEACON study, which examined social factors associated with health outcomes among former or current drug-using PLHIVs in Baltimore, MD. Structural equation modeling was used to identify individual and support network characteristics associated with PLHIVs' preference for informal (family or friends) compared to professional care. The structural equation model indicated preference for informal care was associated with female sex, greater informal care receipt, reporting one's main partner (i.e., boy/girlfriend or spouse) as the primary source of informal care, and a support network comprised greater numbers of female kin and persons supportive of the participant's HIV treatment adherence. Not asking for needed help to avoid owing favors was associated with preferring professional care. Findings suggest that interventions to promote informal end of life care should bolster supportive others' resources and skills for care provision and treatment adherence support, and should address perceived norms of reciprocity. Such intervention will help ensure community caregiving in a population with high needs for long-term care. [ABSTRACT FROM PUBLISHER]

Dr. Cornelius Foley, a geriatrician, is Director of Parker Jewish Institute, New Hyde Park, New York. Dr. Foley discussed the use of humor in his work in a hospice and palliative care environment with Dr. Kathleen Monahan. [ABSTRACT FROM PUBLISHER]

Humor has been shown to assist in the process of aging, particularly in improving health, reducing stress, and improving psychological well-being. This article addresses the tasks of aging, or what Erickson (1963) terms, “the end stage of life,” through the lens of humor. These issues include: identity, self-esteem, heritage and culture, mortality, loss, and self-worth. [ABSTRACT FROM PUBLISHER]

The strong emphasis on feeding in Asian cultures may influence decisions for nasogastric (NG) tube feeding in geriatric inpatients. We evaluated the utility, complications, and opinions of caregivers toward NG tube feeding in an acute geriatric ward in a teaching hospital in Kuala Lumpur. Consecutive patients aged 65 years and older receiving NG tube feeding were included. Sociodemographic, clinical, and laboratory indices were recorded. Opinion on NG tube feeding were evaluated through face-to-face interviews with caregivers, recruited through convenience sampling. Of 432 patients admitted, 96 (22%), age ± standard deviation = 80.8 ± 7.4 years, received NG tube feeding. The complication and mortality rates were 69% and 38%, respectively. Diabetes (odds ratio [95% confidence interval] = 3.34 [1.07, 10.44], aspiration pneumonia (8.15 [2.43, 27.24]), impaired consciousness (3.13 [1.05, 9.36]), and albumin ≤26 g/dl (4.43 [1.46, 13.44]) were independent predictors of mortality. Other relatives were more likely than spouses (23.5 [3.59, 154.2]) and caregivers with tertiary education more likely than those with no formal education (18 [1.23, 262.7]) to agree to NG feeding. Sixty-four percent of caregivers felt NG tube feeding was appropriate at the end of life, mostly due to the fear of starvation. NG tube feeding is widely used in our setting, despite high complication and mortality rates, with likely influences from cultural emphasis on feeding. [ABSTRACT FROM PUBLISHER]

Objective. To examine drug treatment in nursing home patients at the end of life, and identify predictors of palliative drug therapy. Design. A historical cohort study. Setting. Three urban nursing homes in Norway. Subjects. All patients admitted from January 2008 and deceased before February 2013. Main outcome measures. Drug prescriptions, diagnoses, and demographic data were collected from electronic patient records. Palliative end-of-life drug treatment was defined on the basis of indication, drug, and formulation. Results. 524 patients were included, median (range) age at death 86 (19-104) years, 59% women. On the day of death, 99.4% of the study population had active prescriptions; 74.2% had palliative drugs either alone (26.9%) or concomitantly with curative/preventive drugs (47.3%). Palliative drugs were associated with nursing home, length of stay > 16 months (AOR 2.10, 95% CI 1.12-3.94), age (1.03, 1.005-1.05), and a diagnosis of cancer (2.12, 1.19-3.76). Most initiations of palliative drugs and withdrawals of curative/preventive drugs took place on the day of death. Conclusion. Palliative drug therapy and drug therapy changes are common for nursing home patients on the last day of life. Improvements in end-of-life care in nursing homes imply addressing prognostication and earlier response to palliative needs. [ABSTRACT FROM AUTHOR]

Studies suggest that dying at home is a more favorable experience. This study investigated where amyotrophic lateral sclerosis (ALS) patients die and the patient demographics associated with dying in an acute care facility or nursing home compared to home or hospice. Centers for Disease Control and Prevention Multiple Cause Mortality Files from 2005 to 2010 were used to identify ALS patients and to classify place of death. Multinomial logistic regression was used to determine the association between patient demographics and place of death. Between 2005 and 2010, 40,911 patients died of ALS in the United States. Place of death was as follows: home or hospice facility 20,231 (50%), acute care facility (25%), and nursing home (20%). African Americans (adjusted multinomial odds ratio (aMOR) 2.56, CI 2.32-2.83), Hispanics (aMOR 1.44, CI 1.30-1.62), and Asians (aMOR 1.87, CI 1.57-2.22) were more likely to die in an acute care facility, whereas females (aMOR 0.76, CI 0.72-0.80) and married individuals were less likely. Hispanics (aMOR 0.68, CI 0.58-0.79) and married individuals were less likely to die in a nursing home. In conclusion, minorities, men, and unmarried individuals are more likely to die in an acute care facility. Further studies are needed to better understand place of death preferences. [ABSTRACT FROM AUTHOR]

Economic evaluation of end of life care is increasingly expected from both research funders and those making decisions about the use of health and social care resources. There are, however, difficulties in applying the currently established evaluative methods to end of life. These are partly associated with the sensitivity of the topic and the feasibility of data collection but also, more fundamentally, a lack of agreement about the terms in which such care should be evaluated. This paper examines different theoretical perspectives from which economic evaluation of end of life care could be conducted, and argues for the application of a capability approach focusing on the opportunity for a good death. It then examines challenges with taking forward such an approach, including defining, measuring and valuing appropriate outcomes. It concludes that such an approach is viable, and explores how it might be taken forward to assist with resource allocation decisions. [ABSTRACT FROM AUTHOR]

Objectives: There is a growing consensus worldwide that palliative care needs to be both more inclusive of conditions other than cancer and to improve. This paper explores some common challenges currently faced by professionals providing palliative care for patients with either cancer or dementia across five countries. Method: One focus group (n = 7) and 67 interviews were conducted in 2012 across five countries: England, Germany, Italy, the Netherlands and Norway, with professionals from dementia, cancer and palliative care settings. Results: The interviews revealed five common challenges faced across the five countries: communication difficulties (between services; and between professionals, and patients and their families); the variable extent of structural/functional integration of services; the difficulties in funding of palliative care services; problematic processes of care (boundaries, definitions, knowledge, skills and inclusiveness) and, finally, time constraints. Conclusion: These are not problems distinct to palliative care, but they may have different origins and explanations compared to other areas of health care. This paper explored deeper themes hidden behind a discourse about barriers and facilitators to improving care. [ABSTRACT FROM AUTHOR]

Objective To examine the views of general practitioners on providing a palliative approach in residential aged care and in particular their experiences with the palliative care case conference. Background The national project sought to implement and evaluate a comprehensive evidence-based palliative approach in residential aged care. Methods A purposive sample of 11 general practitioners (GPs) across Western Australia (2), South Australia (6), and Queensland (3) participated in face-to-face, semi-structured interviews. Qualitative content analysis was used to generate the core categories. Results The evaluation by the GPs of the palliative care case conference in residential aged care is explained through three core themes: people, place, and performance. Understanding what GPs say about the people involved and the place in which they work, namely the residential aged care facility, can purposefully inform practice and policy. What GPs say about the performance or 'doing' a palliative care case conference is provided in Part II of this two part series. Conclusion The views of GPs, on providing a palliative approach in residential aged care facilitates, offer a critical reflection on current practices and systems. [ABSTRACT FROM AUTHOR]

End of life care is a subject that many patients or health care professionals would prefer not to talk about. People with diabetes have a unique set of care needs during the last year, months and days of life, but until now there has been little guidance on their specific clinical requirements. Approximately half a million people die in England each year and around 75 000 of them will have diabetes. European statistics demonstrate important variations in mortality and the burden of disease related to diabetes with age standardised death rates per 100 000 ranging from 4.0 (Greece) to 17.9 (Portugal), and with higher levels ranging from 36.1 (Israel) to 46.8 (Armenia). It is important that health care professionals are equipped with the knowledge, skills and clear guidance in order to support patients, relatives and carers during what is often a difficult time for all. This article gives a robust definition of the term 'end of life', discusses the demise of more generic United Kingdom guidance on the care of the dying, and presents a consensus approach to quality care for people who are nearing the end of their life. These recommendations were commissioned by Diabetes UK, developed by a multidisciplinary group of heath care professionals and endorsed by key diabetes organisations. The recommendations given can easily be adopted for use in other countries, and the documents and tools are freely available to all. [ABSTRACT FROM AUTHOR]

ObjectivesHospital chaplaincy in the UK's National Health Service (NHS) is an allied profession that is emerging from its origins as an aspect of Anglican clerical organisation. This paper describes the perceptions and practices of hospital chaplains around end of life care and organ donation. DesignQualitative study involving 19 semi-structured exploratory interviews with hospital chaplains in five NHS Hospital Trusts across two regions in the UK. ResultsChaplains provided generic support for the family around death and in relation to end of life conversations. While chaplains were supportive of efforts to increase awareness of issues around deceased donation they held a range of views on organ donation and had limited knowledge of hospital processes and practices. ConclusionsThere is scope for greater training and involvement of hospital chaplains in hospital work on organ donation, and in developing new forms of community engagement to promote awareness and debate. [ABSTRACT FROM AUTHOR]

Background The majority of deaths in the UK occur in acute hospitals, and older people have the highest hospital death rates. Improved palliative care for older people has been identified as an international priority, yet little is known about the profile of older patients with palliative care needs in hospitals. Objective To describe the profile of older hospital inpatients (≥85 years), and to explore the prevalence and nature of palliative care needs among this group. Methods A cross-sectional survey of palliative care need in older people was undertaken in two UK acute hospitals. Hospital case notes were examined for evidence of palliative care need according to Gold Standards Framework (GSF) prognostic indicator criteria. Patients (or consultees) completed assessments of palliative care need. Subjects Data were collected for 654 consenting patients/consultees. This paper describes data from 110 patients aged ≥85 years. Results Forty per cent of the older patients were identified as having palliative care needs according to GSF criteria. Frailty was the most common indicator of palliative care need (16.7%). The most common reason for admission to hospital was general frailty (25.5%). Conclusions While this study is limited by its small sample size, the results suggest that older people with frailty conditions constitute a substantial proportion of hospital inpatients with palliative care needs. However, it is unclear whether a specialist palliative care framework is the most appropriate model for this group. The care provided to older people at the end of life may best be provided by generalists such as geriatricians, as part of a comprehensive generalist-led palliative care framework. [ABSTRACT FROM AUTHOR]

A phenomenological case study of a 93-year-old woman is a discussion of her transitions during a short two and a half week period of morbidity from living independently, to hospital, to nursing home, to grave. Her daughter, an environmental gerontologist, provides intimate conversations and reflections chronicled as she keeps vigil by her side 24 hours a day, 7 days a week. The phenomenological approach captures the emotional dying process and amplifies major issues of aging and dying in place for future study. [ABSTRACT FROM PUBLISHER]

Spiritual care is an essential component of holistic hospice care at the end of life. However, hospices vary considerably in the process of spiritual assessment as a precursor to spiritual care. The Spiritual Life Map (Hodge, 2005) is one tool that has been developed to address diverse spiritual perspectives. Introduction and adoption of such a tool may require training and ongoing support to facilitate its use in a hospice setting. This qualitative study evaluated the introduction, demonstration, and use of spiritual life maps in a hospice setting. Focus groups with hospice chaplains and social workers were conducted to assess hospice professionals' definitions of spiritual care and their responses both before and after hands- on training in the use of spiritual life maps as a tool in end of life care. A phenomenological approach to qualitative analysis was used. Results suggest the need for ongoing training and support in addressing spiritual needs at the end of life, and several barriers to the use of new tools. Implications for research, training, and practice are discussed. [ABSTRACT FROM AUTHOR]

Hersh (2010) raises important issues regarding the ending of the therapeutic relationship. In this paper, we will explore this concept in relation to speech-language pathology (SLP) and palliative care. Palliative care aims to affirm life and minimize the complications of life limiting disease. Speech-language pathologists (SLPs) work with people with progressive and life limiting disease as rehabilitation experts but often work independently of specialist palliative care teams. Rehabilitation may seem incongruent with palliation but SLPs have a vital role in the empowerment of patients with communication difficulties and symptom reduction through specialist dysphagia management and communication therapy. This is vital in the last months and weeks of life. Starting and closing episodes of care remains a challenging area for therapists. SLP membership of palliative care multidisciplinary teams is limited and there may be a lack of understanding between professionals regarding the SLP role. In this paper we will use case studies and the palliative care literature to define a role for rehabilitation and the transition from supportive to palliative rehabilitation and closing episodes of care. [ABSTRACT FROM AUTHOR]

Samuel Golubchuk was unwittingly at the center of a medical controversy with important ethical ramifications. Mr. Golubchuk, an 84-year-old patient whose precise neurological level of function was open to debate, was being artificially ventilated and fed by a gastrostomy tube prior to his death. According to all reports he was neither brain dead nor in a vegetative state. The physicians directly responsible for his care had requested that they be allowed to remove the patient from life support against the wishes of the patient's family. Concurrently the Manitoba College of Physicians and Surgeons released a statement which states that the final decision to withdraw life support lies with the physician. In our opinion the statement is ethically problematic for a number of reasons. 1. It is an affront to the guiding principles of Western medical ethics: patient autonomy and human freedom. 2. The position of Samuel Golubchuk's physicians and the new statement lack cultural sensitivity towards other traditions. 3. In modern society there exists an erosion of a basic attitude towards the value of life. 4. The ability of physicians to predict life expectancy in terminally ill patients has been shown repeatedly to be quite limited. [ABSTRACT FROM AUTHOR]

Despite the assumption that the home is the preferred place of death, most people will die in institutional care, specifically in acute hospital wards. Inevitably, this relatively public setting puts the privacy and dignity of the dying patient and grieving visitors at considerable risk. Our study used observation of practice and staff interviews to describe the process of recognizing, communicating, and managing dying on an acute medical gerontology ward in a large teaching hospital in the United Kingdom. The particularly public nature of hospitals in the United Kingdom is critically examined in the light of privacy as a fundamental component of maintaining dignity and the “good death.” [ABSTRACT FROM AUTHOR]

Technology has provided means to sustain life and provide care regardless of whether the treatment is appropriate and compassionate given the condition of the patient. This study presents two case histories, compiled from historical patient charts, staff notes and observations, that illustrate the variety of ethical issues involved and the role culture plays in the decision making process related to possible futile medical treatment. Ethical and cultural issues related to the cases are discussed and processes are presented that can help hospitals to avoid, or decrease the level of, medically futile care, and improve the cultural appropriateness of medical care and relationships with patients. [ABSTRACT FROM AUTHOR]