bluuebunny/crossref_metadata_2025 huggingface dataset:
Applicability of the Monocyte Activation Test (MAT) in the Quality Control of the 17DD Yellow Fever Vaccine
Authors: de Mattos Katherine Antunes , Navega Elaine Cristina Azevedo , Silva Vitor Fernandes , Almeida Alessandra Santos , da Silva Cristiane Caldeira , Presgrave Octavio Augusto França , Junior Daniel da Silva Guedes , Delgado Isabella Fernandes
Published: April 2019

The need for alternatives to animal use in pyrogen testing has been driven by the Three Rs concept. This has resulted in the inclusion of the monocyte activation test (MAT) in the European Pharmacopoeia, 2010. However, some technical and regulatory obstacles must be overcome to ensure the effective implementation of the MAT by the industry, especially for the testing of biological products. The yellow fever (YF) vaccine (17DD-YFV) was chosen for evaluation in this study, in view of: a) the 2016–2018 outbreak of YF in Brazil; b) the increase in demand for 17DD-YFV doses; c) the complex production process with live attenuated virus; d) the presence of possible test interference factors, such as residual process components (e.g. ovalbumin); and e) the need for the investigation of other pyrogens that are not detectable by the methods prescribed in the YF vaccine monograph. The product-specific testing was carried out by using cryopreserved and fresh whole blood, and IL-6 and IL-1β levels were used as the marker readouts. After assessing the applicability of the MAT on a 1:10 dilution of 17DD-YFV, endotoxin and non-endotoxin pyrogens were quantified in spiked batches, by using the lipopolysaccharide and lipoteichoic acid standards, respectively. The quantitative analysis demonstrated the correlation between the MAT and the Limulus amoebocyte lysate (LAL) assays, with respect to the limits of endotoxin recovery in spiked batches and the detection of no pyrogenic contamination in commercial batches of 17DD-YFV. The data demonstrated the applicability of the MAT for 17DD-YFV pyrogen testing, and as an alternative method that can contribute to biological quality control studies.
Is Live-Tissue Training Ethically Justified? An Evidence-based Ethical Analysis
Authors: Rubeis Giovanni , Steger Florian
Published: April 2019

Trauma training is a crucial element of medical education in the civilian sector, as well as in the military sector. Its aim is to prepare physicians, medics and nurses for stressful and demanding emergency situations. Training methods include live-tissue training (LTT) on animal models and simulation-based trauma education. For LTT, blast, gunshot or stab wounds are inflicted on anaesthetised animals, mostly goats and pigs, but sometimes non-human primates. This training method raises ethical concerns, especially in the light of increasingly sophisticated simulation-based methods. Despite these non-animal alternatives, LTT is still widely used due to its presumed educational benefits. In this paper, the question of whether LTT can still be justified, is discussed. We developed a normative framework based on the premise that LTT can only be ethically justified when it yields indispensable benefits, and when these benefits outweigh those of alternative training methods. A close examination of the evidence base for the presumed advantages of LTT showed that it is not superior to simulation-based methods in terms of educational benefit. Since credible alternatives that do not cause harm to animals are available, we conclude that LTT on animal models is ethically unjustified.
A Review of the Contributions of Cross-discipline Collaborative European IMI/EFPIA Research Projects to the Development of Replacement, Reduction and Refinement Strategies
Authors: Wolfensohn Sarah
Published: April 2019

The objective of this review is to report on whether, and if so, how, scientific research projects organised and managed within collaborative consortia across academia and industry are contributing to the Three Rs (i.e. reduction, replacement and refinement of the use of animals in research). A number of major technological developments have recently opened up possibilities for more direct, human-based approaches leading to a reassessment of the role and use of experimental animals in pharmacological research and biomedicine. This report reviews how projects funded by one of the research funding streams, the Innovative Medicines Initiative (IMI), are contributing to a better understanding of the challenges faced in using animal models. It also looks how the results from these various projects are impacting on the continued use of laboratory animals in research and development. From the progress identified, it is apparent that the approach of private–public partnership has demonstrated the value of multicentre studies, and how the spirit of collaboration and sharing of information can help address human health challenges. In so doing, this approach can reduce the dependence on animal use in areas where it has normally been viewed as necessary. The use of a collaborative platform enables the Three Rs to be addressed on multiple different levels, such that the selection of models to be tested, the protocols to be followed, and the interpretation of results generated, can all be optimised. This will, in turn, lead to an overall reduction in the use of laboratory animals.
Replacing Animal Use in Education and Training
Authors: Balls Michael
Published: April 2019

In the USA, the general public want the use of animals in medical training to cease, but, at least in Australia, some teachers want it to continue, even when effective non-animal alternatives are available.
Characterisation of a Canine Epithelial Cell Line for Modelling the Intestinal Barrier
Authors: Farquhar Michelle J. , McCluskey Emma , Staunton Ruth , Hughes Kevin R. , Coltherd Jennifer C.
Published: April 2019

Little is known about how food interacts with the intestinal epithelium during the digestion process. However, it is known that ingredients in food can modulate the intestinal barrier, and have the potential to disrupt homeostasis of the gut. Here, we characterise a conditionally immortalised canine intestinal epithelial cell (cIEC) line for use in in vitro assays, to assess the effect of food ingredients on intestinal barrier function, permeability, cell health, and inflammation. Microscopy and flow cytometry confirmed that cIECs had a phenotype consistent with those of epithelial origin, and were able to differentiate to mature enterocytes. The cIECs also formed a monolayer when grown on Transwell® inserts, producing functional tight junctions between the cells. In contrast to the human-derived Caco-2 cell line, transepithelial electrical resistance (TEER) was increased in cIECs in response to two different raw ingredients. The exposure of cIECs to known inflammatory stimuli and raw ingredients induced the nuclear translocation of nuclear factor kappa-light-chain-enhancer of activated B-cells (NF-κB). This work demonstrates the value of a unique cIEC in vitro model to study the effects of food ingredients on canine intestinal function and health, and supports continued efforts to reduce and refine the use of animals in scientific research.
Ten Years of REACH — An Animal Protection Perspective
Authors: Taylor Katy
Published: April 2019

It has now been 11 years since the EU's new chemicals legislation ( Regulation No. 1907/2006 concerning the Registration, Evaluation, Authorisation and Restriction of Chemicals [REACH]) came into force. Two important statements in the REACH Regulation in relation to animal testing and alternatives are: Article 1(1), which states that one of its purposes is to promote alternative methods; and Article 25(1), which states that animal testing should be used as a last resort. This review looks at the mechanisms that were put in place within REACH to achieve these aims and asks, not only if they are being implemented properly, but also if they have been sufficient. Whilst the chemical industry has heavily used data-sharing and read-across, this review concludes that nevertheless over 2.2 million animals have already been used in new tests for REACH registrations. This equates to an annual average of 275,000 animals; 58,000 more per year than the best-case estimate made by the European Commission in 2004. The use of in vitro and (Q)SAR approaches as standalone replacements for animal tests has been relatively low. The levels of funding for research into alternative methods remain low, and there are concerns over the speed of formal adoption of those that have been validated. In addition, there have been issues with the recognition that testing as a last resort and the promotion of alternative methods applies to all parties, including the Commission, Member States and the agency responsible, the European Chemicals Agency. This review provides ten recommendations for better implementation of these two key aspirations, as well as lessons to be learned for future similar legislation.
The Integrated Use of Alternative Methods in Toxicological Risk Evaluation
Authors: Blaauboer Bas J. , Barratt Martin D. , Houston J. Brian
Published: April 2019

The ECVAM Task Force on Integrated Testing Strategies was established in December 1996, with the remit of assessing the current status of integrated toxicity testing, and of making proposals regarding the design and implementation of integrated testing strategies. The first step in an integrated testing strategy is usually to determine the chemical functionality of a substance, on the basis of its structure and physicochemical properties. The biokinetic and dynamic behaviours of the chemical in various in vitro systems are then assessed. The various elements are then integrated, in either a parallel or a stepwise fashion, to make predictions of the local or systemic toxicity of the chemical of interest. In this report, a generic scheme for local/systemic toxicity, and a specific scheme for target organ toxicity, are proposed. The scope and limitations of the approaches are discussed. The task force hopes that its proposals will stimulate a discussion on the feasibility of this type of approach and it welcomes any feedback. It is planned that the discussion points will be elaborated in a second task force report.
The Effects of Oxidative Stress in In Vitro Cultured Astroglial Cells
Authors: Frederiksen Casper Møller , Clausen Jørgen
Published: April 2019

It has been suggested that glial cells in the central nervous system might function as a buffer and protect neurons and synapses. Associated with such a function, glial cells might be affected in degenerative diseases, for example, Alzheimer's disease and Parkinson's disease, due to generation of free-radicals. Free-radicals might be generated during the metabolic transformation of xenobiotics. The purpose of the present study was to determine whether a xenobiotic (in this case, paraquat), is metabolised in glial cells during the generation of free-radicals. Furthermore, this study determined whether free-radicals can induce DNA fragmentation and whether this fragmentation can be repaired. The data produced indicated that astroglial cells contain P450-reductase which transforms paraquat into a pyridium free-radical. In turn, this causes a dose-dependent DNA fragmentation, as determined by using single-cell gel electrophoresis. The dose-dependent effect was valid up to 80μM paraquat. The oxidative stress induced in the astroglial cells was also associated with a maximum 15% increase in the anti-oxidative enzyme, glutathione peroxidase. After exposure to 40μM paraquat, followed by growth of the cells in a paraquat-free medium, DNA repair was shown to be rather slow, and was only obvious two hours after exposure to paraquat. This might be related the shuttle in which paraquat/P450-reductase is implicated, which causes a protracted generation of free-radicals. The data are discussed in relation to the available literature.
Predicting the Toxicity of Oil-shale Industry Wastewater by its Phenolic Composition
Authors: Kahru Anne , Põllumaa Lee , Reiman Rain , Rätsep Annely
Published: April 2019

The chemical composition and toxicity of five phenolic wastewater samples collected from the Kohtla-Järve (Estonia) oil-shale industry region were analysed. The total phenolic contents (HPLC data) of these samples ranged from 0.7mg/l to 195mg/l. A total of 11 phenolic compounds were found in the wastewater samples, the most abundant being phenol (up to 84mg/l) and p-cresol (up to 74mg/l). Artificial phenolic mixtures were also composed, to mimic the content of phenolic compounds in the wastewater samples. The theoretical toxicities of these artificial mixtures were calculated by using the toxicities of the individual phenolic constituents to photobacteria (the BioTox™ test) and were assumed to have an additive mode of action. From the BioTox data, the additive toxic effects of phenolic compounds in the artificial mixtures were confirmed to be highly probable. The toxicities of the wastewater samples and their artificial phenolic analogues (mixtures) were studied by using a battery of Toxkit microbiotests (Daphtoxkit F™ magna, Thamnotoxkit F™, Protoxkit F™ and Rotoxkit F™) and three photobacterial tests (Microtox™, BioTox™ and Vibrio fischeri 1500). The wastewaters were classified as toxic (two samples), very toxic (two samples) and extremely toxic (one sample). Comparison of the test battery responses showed that the industrial wastewaters were 2–28-fold more toxic than the respective artificial phenolic mixtures. The photobacterial tests proved to be the most appropriate for screening purposes. This was the first attempt to use a test battery approach in the toxicity testing of Estonian wastewaters. The study showed that the toxicity of oil-shale industry wastewaters could not be predicted solely on the basis of their phenolic composition, since only 7–50% of their toxicity was shown to be due to phenolic compounds. It is true, to a certain extent, that the majority of environmental samples are usually very complex and contain various types of pollutants. As even a full chemical analysis (which is very expensive) can easily miss the constituent(s) with the greatest toxic effect(s), the use of toxicity tests in parallel to chemical analysis should be encouraged.
Volatile Organic Compounds in Tartu Office Buildings
Authors: Soon Argo , Kähkönen Erkki
Published: April 2019

The volatile organic compounds (VOCs) that are emitted by many materials and activities are common indoor air pollutants. It is believed that VOCs might contribute to many adverse health effects, but there is scant evidence to support this. The difficulties involved in assessing the effects of VOCs involve both the chemistry of indoor air and the physiological responses in varying physical conditions. Inconsistent results of experimental studies and difficulties in performing longitudinal epidemiological studies have led to the conclusion that only higher concentrations (in the range of 1–25mg/m3) of VOCs in indoor air should be considered to relate to higher health risks. This pilot study provides evidence that there is no such risk in Estonian offices.
Use of the Daphnia magna Test to Estimate the Toxicity of the Ozonation By-products of Phenols and Chlorophenols
Authors: Trapido Marina , Veressinina Yelena
Published: April 2019

The toxicities of the ozonation products of 18 phenols were assayed with the Daphnia magna 24-hour toxicity test. The toxicities of the ozonation products of eight individual chlorophenols, and a mixture of them, are significantly lower than the toxicities of untreated solutions of chlorophenols. For some other phenols, including ordinary phenol (oxybenzene), toxicity increased during ozonation, and the formation of very toxic products was observed.
Treatment of refractory secondary hemophagocytic lymphohistiocytosis with umbilical cord mesenchymal stem cells
Authors: Yang Xiaoyang , Zhang Shufang , Huang Denggao , Wang Zhiming , Chen Xiaoxia , Luo Xiansheng , Lei Meiqing , Yu Feng , Chen Xiaobo , Huang Peilong
Published: April 2019

Hemophagocytic lymphohistiocytosis (HLH) is an aggressive and life-threatening syndrome of excessive immune activation. Mesenchymal stem cells (MSCs) generate an immunosuppressive microenvironment by secreting cytokines and have been used to treat autoimmune diseases. We report the first case of refractory secondary HLH treated with umbilical cord MSCs. A 52-year-old Chinese female patient with a history of type 2 diabetes was diagnosed with refractory secondary HLH based upon the HLH-2004 protocol and was treated by infusion of third-party umbilical cord MSCs (1.4 × 106 cells/kg of body weight, 70 × 106 cells in total) from the stem cell bank of Hainan Province. Body temperature recovered to normal on the sixth day after infusion with umbilical cord MSCs, and the levels of inflammatory factors macrophage inflammatory protein (MIP)-1α, interleukin (IL)-12p70, stromal cell-derived factor (SDF)-1α, and IL-7 decreased significantly. Blood glucose levels were significantly lower than before treatment, and the amount of insulin needed was significantly reduced. Umbilical cord MSCs can relieve the symptoms of refractory secondary HLH and have a therapeutic effect on insulin resistance in type 2 diabetes mellitus.
Breaking the Information Blockade
Authors: Pesic Milica
Published: April 2019

After the breakup of the former Yugoslavia and the ensuing war, communications in the region were severely disrupted. The Alternative Information Network (AIM), a computer network of independent journalists based in different centres in the new republics, was set up in October 1992 to combat these restrictions.
Sedation for Delirium and Other Symptoms in Terminally Ill Patients in Edmonton
Authors: Fainsinger Robin L , De Moissac Donna , Mancini Isabel , Oneschuk Doreen
Published: April 2019

The use of sedation and the management of delirium and other difficult symptoms in terminally ill patients in Edmonton has been reported previously. The focus of this study was to assess the prevalence in the Edmonton region of difficult symptoms requiring sedation at the end of life. Data were collected for 50 consecutive patients at each of (a) the tertiary palliative care unit, (b) the consulting palliative care program at the Royal Alexandra Hospital (acute care), and (c) three hospice inpatient units in the city. Patients on the tertiary palliative care unit were significantly younger. Assessments confirmed the more problematic physical and psychosocial issues of patients in the tertiary palliative care unit. These patients had more difficult pain syndromes and required significantly higher doses of daily opioids. Approximately 80% of patients in all three settings developed delirium prior to death. Pharmacological management of this problem was needed by 40% in the acute care setting, and by 80% in the tertiary palliative care unit. The patients sedated varied from 4% in the hospice setting to 10% in the tertiary palliative care unit. Of the 150 patients, nine were sedated for delirium, one for dyspnea. The prevalence of delirium and other symptoms requiring sedation in our area is relatively low compared to others reported in the literature. Demographic variability between the three Edmonton settings highlights the need for caution in comparing results of different palliative care groups. It is possible that some variability in the use of sedation internationally is due to cultural differences. The infrequent deliberate use of sedation in Edmonton suggests that improved management has resulted in fewer distressing symptoms at the end of life. This is of benefit to patients and to family members who are with them during this time.
General Practitioner Training in Palliative Care: An Experiential Approach
Authors: Boakes Jolee , Gardner Deborah , Yuen Kevin , Doyle Susan
Published: April 2019

With the rising incidence of cancer and with more terminally ill patients wishing to be cared for at home, it is clear that there is a growing need for general practitioners (GPs) who are skilled in providing palliative care. In an attempt to improve the palliative care knowledge and skills of GPs in Western Australia and the quality of care they provide, a 14-week training program was developed by the Silver Chain Nursing Association and the Perth South Eastern Division of General Practice. The program used experiential learning techniques, such as a clinical attachment and mentoring. Research has shown that performance-based rather than cognitive education methods have a greater impact on practice outcomes. The program was evaluated by an external body and found to have achieved its objectives. The results of the evaluation are discussed, together with their implications for postgraduate education.
The Canadian Palliative Care Education Group
Authors: Macdonald Neil , Boisvert Marcel , Dudgeon Deborah , Hagen Neil
Published: April 2019

The Canadian Palliative Care Education Group, a committee of the Canadian Society of Palliative Care Physicians, carries out surveys from time to time on the status of palliative care education in Canadian medical schools. We describe the organization of the Canadian Palliative Care Education Group and report on a survey carried out in the 1996–97 academic year. Our data suggest that the emphasis on palliative care varies widely amongst the 16 Canadian medical schools, in concert with the availability of academic staff positions in palliative care. We conclude that the need for palliative care education is supported by rhetoric which remains to be matched by proportionate tangible investment.
Palliative Cancer Patients and Their Families on the Internet: Motivation and Impact
Authors: Pereira Jose , Bruera Eduardo , Macmillan Karen , Kavanagh Sandra
Published: April 2019

Increasingly, palliative patients and their families are going online. A series of cases are presented to explore the reasons they go online and the effects of their online activity, both harmful and beneficial. This paper highlights the need to take this growing phenomenon and its effects on patient care seriously, and identifies key areas that need to be explored further.
Referral of Terminally Ill Patients for Hospice: Frequency and Correlates
Authors: Bradley Elizabeth H. , Fried Terri R. , Kasl Stanislav V. , Cicchetti Domenic V. , Johnson-Hurzeler Rosemary , Horwitz Sarah M.
Published: April 2019

Background

Despite the central role of hospice in end-of-life care, little is known about the proportion of terminally ill patients referred for hospice and the physician factors associated with hospice referral.

Methods

Cross-sectional data from a self-administered survey of 231 physicians were used to estimate the proportion of terminally ill patients who were referred for hospice and to assess the independent effects of physician factors on hospice referral.

Results

On average, physicians reported referring about 55% of their terminally ill patients for hospice; 26.7% of the physicians referred less than one quarter of their terminally ill patients. Physician specialty, board certification, and physicians’ knowledge level about hospice were independently associated with the proportions of terminally ill patients referred for hospice.

Conclusion

Many terminally ill patients are not referred for hospice care and physician factors influence the use of hospice significantly. The study suggests effective factors and groups to target with interventions to enhance the appropriate use of hospice.
Perceived Skills in Palliative Medicine of Newly Qualified Doctors in the U.K.
Authors: Charlton Rodger , Smith Gary
Published: April 2019

Aim

To ascertain the perceived skills of students at U.K. medical schools in palliative medicine.

Design

A validated questionnaire survey.

Participants

Newly qualified U.K. pre-registration house officers (PRHOs). Measures: A Likert scale from 0 to 5 for respondents to rate their perceived skills in four clinical scenarios, and their anxiety in caring for the dying.

Results

Mean confidence rating in breaking bad news was 2.9, in ability to empathize was 3.2, in discussing prognosis was 3.3, and in providing symptom control was 2.8. Mean anxiety rating in caring for a dying patient was 2.9. Of the comments, 24% wished for more “hands on” experience and 23% suggested further curriculum recommendations.

Conclusion

Teaching of palliative medicine is still inadequate for the needs of recently qualified doctors. Although PRHOs have identified a need for further instruction there is also acknowledgment that it is a difficult subject to teach. Recommendations are made for coordination of current interdepartmental teaching programs.
Palliative Care Crises in the Community: A Survey
Authors: Mantz Margaret , Crandall Jacqueline M.
Published: April 2019

With the rising age of the population, hospital cutbacks, and increased attention to home-based care for the dying, the community can expect to experience more intense care situations and a greater potential for palliative care crises developing in the home setting. Whether the crisis is precipitated by hemorrhage, severe uncontrolled pain, or agitation, the demands placed on the family unit and care provider can be phenomenal. Only with a greater awareness of the difficulties encountered in the home setting can the community begin to respond to the needs of the family in crisis. An open-question survey regarding palliative care crises in the community was conducted among community visiting RNs, home care case managers, and palliative outreach clinicians in southwestern Ontario, The objectives were: 1) to determine the pattern of events that precipitated a crisis; 2) to understand how crises were managed; 3) to identify barriers to effective crisis management; 4) to investigate the impact on the family unit and care provider. Participants were also asked to list the essential resources they needed to deal effectively with a crisis situation. This paper highlights the results of the survey and suggests implications for the future direction of palliative care in the home.
Communication, Negotiation, and Mediation: Dealing with Conflict in End-of-Life Decisions
Authors: Bowman Kerry W.
Published: April 2019

In recent years, it has become possible for the end of life to be a negotiated event, particularly in the intensive care unit. A multitude of often unidentified and poorly understood factors affect such negotiations. These include, family dynamics, ever-changing health care teams, inconsistent opinions about prognosis, and cultural differences between physicians, and patients and their families. When these factors converge, conflict may erupt. This article explores the nature, antecedents, and cost of such conflict. Arguments for the importance of balanced communication, negotiation, and mediation in end-of-life care are put forward.
End-of-Life Decision Making in the Seriously Ill Hospitalized Patient: An Organizing Framework and Results of a Preliminary Study
Authors: Heyland Daren K. , Tranmer Joan , Feldman-Stewart Deb
Published: April 2019

Recent studies of patient/family satisfaction with end-of-life care suggest that improvements in communication and decision making are likely to have the greatest impact on improving the quality of end-of-life care. The apparent failure of recent studies specifically designed to improve decision making strongly suggest that there are powerful determinants of the decision making process that are not completely understood. In this paper, we present an organizing framework that describes the decision making process and breaks it into three analytic steps: information exchange, deliberation, and making the decision. In addition, we report the results of a preliminary study of end-of-life decision making that incorporates aspects of this organizing framework. Thirty-seven seriously ill hospitalized patients were interviewed. The majority wanted to share decisional responsibility with physicians. We demonstrated the feasibility of measuring certain aspects of the decision making process in such patients. By providing and using a framework related to end-of-life decision making, we hope to better understand the complex interaction and processes between dying patients, caregivers, and physicians.
The Edmonton Functional Assessment Tool: Further Development and Validation for Use in Palliative Care
Authors: Kaasa Terry , Wessel Jean
Published: April 2019

The objective of this study was to examine the validity of the revised version of the Edmonton Functional Assessment Tool (EFAT-2), which was designed to measure physical impairment and functional performance of patients in palliative care. The EFAT-2 was administered to 275 patients on admission to an acute palliative care unit. Principal-components factor analysis was performed on the 10 items of the scale, and Cronbach's alpha was calculated to measure internal consistency. A one-way analysis of variance (ANOVA) was carried out to compare the admission EFAT-2 scores of three groups of patients: (a) deceased on the unit, (b) transferred to a continuing care palliative unit, (c) discharged home. Two main factors were revealed: physical and non-physical (cognitive/affective). Pain was identified as an independent item and did not correlate with any other item. Cronbach's alpha was 0.86. The ANOVA was significant (F [2,267] 29.063, p<0.001). The results suggest that the EFAT-2 measures one construct. They also suggest that the EFAT-2 is able to discriminate between palliative care patients based on discharge location.
Embracing Vulnerability: Risk and Empathy in Palliative Care
Authors: Boston Patricia , Towers Anna , Barnard David
Published: April 2019

This paper discusses a case example from a larger case narrative study conducted by the authors during 1995–1999. The case illustrates the premise that the dying experience is ultimately a complex experience and one that the caregiver may never truly understand. Both patient and caregivers remain learners. We propose that while the process of achieving empathic communication necessarily demands “good listening,” the palliative care provider may be invited to go beyond the domain of listening, to emotional realms that are neither easy nor comfortable. This paper examines two aspects of empathy: 1) the process of learning to empathize with persons who are dying; 2) empathy as a therapeutic act that requires vulnerability and personal risk within the patient-caregiver relationship.
Discussing End-of-Life Issues with Patients: Reflections on Developing an Interviewing Template to Assist First-Year Medical Students
Authors: Jones Jeremy , Hall Pippa , Schroder Cori , Weaver Lynda , Bouvette Maryse
Published: April 2019

First-year medical students at the University of Ottawa currently use an interview template to work with patients who have chronic illnesses. A second-year medical student (JJ) modified the template to facilitate the discussion of death and end-of-life care by students who may have had little previous experience with such sensitive topics. The modification was accomplished using the following strategies: a systematic literature review on long-term care or nursing home residents’ end-of-life needs; participation in a support group for families of dying patients; volunteering in a day hospice program for two months; piloting the template with two palliative care patients, one resident of a long-term care facility, and one family member. The paper summarizes and reflects on the process.
A Spanish Version of the McGill Quality of Life Questionnaire
Authors: Tolentino Victorio R. , Sulmasy Daniel P.
Published: April 2019

Although Spanish is a major world language and increasingly common in North America, most instruments that measure quality of life (QOL) are written in English, limiting researchers’ ability to assess QOL in patients who speak only Spanish. In this article, we present a Spanish version of the McGill Quality of Life Questionnaire (MQOL), a validated instrument found particularly relevant for patients with life-threatening illness. A translation/ back-translation method, supplemented with review by a committee composed of lay persons and clinicians speaking Puerto Rican, Dominican, Mexican, Salvadoran, Ecuadorian, and Colombian Spanish, was used to achieve conceptual equivalence with the English version. Our initial review demonstrated face validity for the Spanish version of the MQOL. However, further testing is required to fully determine its psychometric properties and to provide a version that has been validated in use.
The Experience of Respite during Home-Based Family Caregiving for Persons with Advanced Cancer
Authors: Strang Vicki R. , Koop Priscilla M. , Peden Jacqueline
Published: April 2019

The purpose of this qualitative interpretive study was to explore the experience of respite during home-based family caregiving for persons with advanced cancer. Fifteen caregivers were interviewed twice after the death of their family member. Three main themes emerged from the data analysis. First, caring for a dying family member at home is an emotionally intense, exhausting, and singular experience, set in a world apart from everyday life patterns. Second, the caregivers differentiated between cognitive breaks and physical (getting away from) breaks of respite. To achieve a cognitive break and yet remain within the caregiving environment was viewed as important, whereas the physical separation from it was significant only if it contributed in some meaningful way to the caregiving. Third, the meaning of respite is rooted in the desire to bring a measure of quality and normalcy to the life of the dying person. Respite means staying engaged in living life with the dying family member.
Meeting Existential Needs in Palliative Care—Who, When, and Why?
Authors: Bolmsjö Ingrid , Hermerén Göran , Ingvar Christian
Published: April 2019

Existential concerns are of great importance to those who are terminally ill. However, these matters are seldom brought into focus in the care of the patients. One crucial question is: who should take care of the patient's existential needs? The present study focuses on possible alternatives for dealing with such concerns, including the staff or significant others. A focus group was set up to gather and examine reflections from people having first-hand experience with this problem. The results of this study indicate that, with regard to existential needs, there are no general solutions. On the other hand, under specific conditions, several solutions can be satisfactory. Possible ways of handling the problem are suggested. Moreover, staff should pay attention to constraints operating in care settings, such as continuity and time, competent organization, and personal prerequisites.
Nurse Specialist Assessment and Management of Palliative Care Patients who are Depressed—a Study of Perceptions and Attitudes
Authors: Lloyd-Williams Mari , Payne Sheila
Published: April 2019

Depression is a frequent symptom in palliative care patients but is often not diagnosed. In the U.K., the majority of patients with advanced cancer are referred to a clinical nurse specialist (CNS) whose remit includes the assessment of psychological symptoms and depression. Clinical nurse specialists have a key role in the diagnosis and management of patients with depression and it is important that they have the skills to do so. A postal questionnaire of all U.K. hospital, hospice, and community palliative care clinical nurse specialist teams was carried out to determine how they assessed depression in their patients. The response rate was 40%. Seventy-nine percent of all clinical nurse specialists believed their skills were poor in this area, and 92% felt they required further training. These beliefs were substantiated by the difficulties nurses encountered in assessing depression and by their beliefs regarding antidepressant medication. Clinical nurse specialists have a pivotal role in improving the detection and management of depression in palliative care patients, and require further training in this area.
A Multi-Professional Short-Term Group Intervention for Informal Caregivers of Patients Using a Home Palliative Care Service
Authors: Harding Richard , Leam Celia , Pearce Alison , Taylor Elizabeth , Higginson Irene J.
Published: April 2019

Informal carers of home palliative care patients have high unmet needs. However, interventions for carers are few. This research-based short-term group intervention addresses the information and support needs of carers. Multiprofessional informal teaching is combined with peer support. The intervention was designed by integrating the findings from a qualitative study and the evidence on needs and interventions, in order to address the key issues of feasibility, acceptability, and accessibility. Qualitative data from attendees showed that identifying with other carers and validating feelings, asking questions of professionals, and providing each other with support and encouragement were valuable outcomes from the group.
Practical Wisdom: Competencies Required in Alleviating Suffering in Palliative Care
Authors: Öhlén Joakim
Published: April 2019

The aim of this article is to reflect upon the competencies required to alleviate suffering in palliative care. The knowledge to prudently and wisely act in a situation involving human relationships can be defined in terms of practical abilities and contextual skills. In the setting of the care of the very ill and dying, practical wisdom such as the carer's ability to meet the suffering person and to act with sensitivity and openness, becomes important. From this, learning to alleviate suffering emerges as receiving insight and wisdom from the suffering person's experience of suffering. This means that the testimony of suffering persons—what they have endured, given up and experienced—becomes as significant as theoretical and practical knowledge of suffering. The professional carer needs to learn how to be open to and interpret what the suffering person, living with suffering and death in the midst of life, can teach.
My Love is Hurting: The Meaning Spouses Attribute to Their Loved Ones’ Pain during Palliative Care
Authors: Mehta Anita , Ezer Hélène
Published: April 2019

The purpose of this qualitative study was to develop our knowledge of the pain experiences of family members by addressing the meaning of cancer pain to the spouse of a patient receiving palliative care. In particular, this study explored factors associated with the meanings the spouses ascribe to the experience of pain during palliative care and whether the meanings the patients attributed to pain were similar to the meanings held by the spouse. Two different states emerged, the “in-pain state” and the “out of pain state”. The spouses described feelings of helplessness, fear, and unfairness when witnessing their loved one in pain. Once the pain had been controlled, spouses described feelings of peace and relaxation, and felt this meant that the couple could return to their old routines because their spouse was still alive. It was discovered that the meanings placed on the cancer pain differed for the spouse and the patient, with the spouse focusing on future consequences. Implications and suggestions for nursing practice and future research are proposed.
Pain Relief with Short Term Irradiation in Locally Advanced Carcinoma of the Pancreas
Authors: Morganti Alessio G. , Trodella Lucio , Valentini Vincenzo , Barbi Sergio , Macchia Gabriella , Mantini Giovanna , Turriziani Adriana , Cellini Numa
Published: April 2019

Objectives

To evaluate whether a short radiation treatment (30 Gy, 3.0 Gy/fraction) had analgesic efficacy in patients with unresectable pancreatic carcinoma.

Methods

Twelve patients were included in this analysis. Before starting and at four weeks after radiation therapy, pain intensity was evaluated and analgesic drug therapy was adjusted until a 0–3 pain score was reached (WHO).

Results

No radiotherapy interruptions, no hospitalisation due to toxic reactions, and no severe toxicity were observed. Six patients (50%) had pain control without pharmacological therapy, three patients (25%) reduced their use (35%–72%) of analgesics, while in the remaining three patients (25%) there was no change in analgesic use. Overall, mean reduction in the use of analgesics was 63.1% ± 43.8%. During follow-up (44 months), two patients (16.7%) showed a worsening of pain that required increased analgesia; in one patient, percutaneous splanchnicectomy was necessary.

Conclusion

In patients excluded from standard concomitant chemoradiation, hypofractionated-accelerated radiotherapy is feasible and results in pain relief in most patients, documented as a reduced need for analgesics.
Place of Death and Use of Health Services in the Last Year of Life
Authors: Grande Gunn E. , Mckerral Angela , Addington-Hall Julia M. , Todd Chris J.
Published: April 2019

Aim

To investigate whether health service input in the last year of life differs between cancer patients who die at home versus those dying in inpatient care.

Methods

Post hoc exploratory case-control study of 127 home deaths and 200 inpatient deaths. Retrospective electronic record linkage of patients’ community and inpatient care during the last year of life.

Results

Patients who died at home began their home nursing care closer to death than those who died as inpatients. Their first contact with inpatient hospice care began further from death. Before their final month, home death patients also had more specialist and district nursing than patients who died in inpatient care.

Conclusions

Patients who began their home nursing early were less likely to die at home than those who began such care late. This suggests that it may be difficult to sustain end-of-life care at home for an extended period. Further research incorporating assessment of informal care input and disease trajectory is required to investigate this issue.
The Nature of Suffering and its Relief in the Terminally Ill: A Qualitative Study
Authors: Daneault Serge , Lussier Véronique , Mongeau Suzanne , Paillé Pierre , Hudon Éveline , Dion Dominique , Yelle Louise , Chum
Published: April 2019

The essential mandate of medicine is the relief of suffering. However, the quest for an integrated model towards a conceptualization of suffering is still ongoing and empirical studies are few. Qualitative inquiry using 31 in-depth interviews and content analysis was carried out between 1999 and 2001 in 26 patients diagnosed with terminal cancer. The suffering experience was described through a multiplicity of heterogenous elements from the physical, psychological, and social spheres. Systematic synthesis of interview material yielded three apparently irreducible core dimensions. Respondents defined their suffering in terms of 1) being subjected to violence, 2) being deprived and/ or overwhelmed, and 3) living in apprehension. Cassell wrote, in 1991, that to know the suffering of others demands an exhaustive understanding of what makes them the individuals they are (1). Our model can be of use in structuring and eliciting this necessary information. Understanding how a particular patient feels harmed, deprived or overburdened, and overtaken by fear, provides a lever for action tailored to the specifics of that person's experience.
How do Proxies’ Perceptions of Patients’ Pain, Anxiety, and Depression Change during the Bereavement Period?
Authors: Mcpherson Christine J. , Addington-Hall Julia M.
Published: April 2019

The retrospective approach in palliative care research provides valuable insight into death and dying, and the effectiveness of palliative care. The method involves collecting information from proxies (usually significant others) after the patient's death. This exploratory study investigates whether proxies’ accounts differ during bereavement, and provides possible explanations for why discrepancies might occur. Thirteen bereaved family members were interviewed, at three to five months and seven to nine months after the patient's death, about the patient's pain, anxiety, and depression, using semi-structured interviews and the symptom rating scale from the Views of Informal Carers–Evaluation of Services (VOICES) interview. Analysis of VOICES ratings over time indicated consistency for anxiety, while pain and depression ratings were variable and, in many cases, less severe and less frequent with the passage of time. Qualitative analysis of proxies’ interview transcripts revealed a number of categories and themes that could be explained within the psychological and palliative care literature. The findings suggest that timing is an important consideration when gathering information from proxies retrospectively.
Family Perceptions of Worry, Symptoms, and Suffering in the Dying
Authors: Hickman Susan E. , Tilden Virginia P. , Tolle Susan W.
Published: April 2019

In this exploratory study, family members of 63 decedents were interviewed by telephone, two to five months post-death, about their perceptions of their loved one's worries, symptoms, and suffering at the end of life. The most common worries reported focused on loss of bodily function (44%), being dependent (40%), and being a burden (39%). Distressing physical and psychological symptoms were reported. A majority (94%) of family members reported that their loved one suffered at the end of life, but only worries about loss of quality of life (e.g., being unable to participate in enjoyable activities) were predictive of reports of suffering. Findings suggest that worries, irrespective of the level of current symptoms, play an important role in the suffering of dying patients, and that treatment plans for the terminally ill should routinely explore both symptoms and worries.
Lost in Translation: Dignity Dialogues at the End of Life
Authors: Hawryluck Laura
Published: April 2019

After a diagnosis of life-threatening illness, decisions must be made regarding various treatment options including life-sustaining interventions. The preservation of dignity is commonly invoked in these discussions with patients, their substitute decision makers, and health care providers. Current thoughts on dignity explore two main ideas: dignity as intrinsic worth and dignity as worth judged according to extrinsic socially based constructs. For the most part, both notions of dignity are appealed to in discussions of continuing or withholding/withdrawing treatments and in debates on the legalization of assisted death. These conceptions of dignity are value-laden and frequently biased, and therefore should be used with caution, if at all, in discussions with patients and their substitute decision makers. The fundamental issues in discussion with all patients diagnosed with a life-threatening illness are ones of respect for persons, acceptance, caring, and the value of interpersonal relationships.
The Impact on Families of Respite Care in a Quicken's Hospice Program
Authors: Davies Betty , Steele Rose , Collins John B. , Cook Karen , Smith Stephany
Published: April 2019

With increasing trends towards home care of children with even the most complex conditions and care requirements, respite becomes critical in improving the quality of life for terminally ill children and their families. This article reports on the respite component of an evaluation project that examined the effect of the Canuck Place children's hospice program on the families it served during its first 30 months of operation. Canuck Place, located in Vancouver, British Columbia, Canada, is the first free-standing children's hospice in North America. Findings are derived from mail-out surveys to 144 families, face-to-face interviews with 18 families, and separate questionnaires specifically directed to parents who had used Canuck Place respite services. Sixty-five parents responded to the respite questions. They cited a wide range of benefits to the ill child, the child's siblings, and to the parents themselves; they also offered a few cautions. Our discussion focuses on three “lessons learned” from this unique investigation of respite within pediatric hospice care.