Marie Curie Palliative Care Institute Liverpool

The authors describe a method of systematically reviewing research from different paradigms. They draw on the methods adapted, developed, and designed during a study concerned with the delivery of care across professional boundaries. Informed by the established method of systematic review, the authors undertook the review in distinct stages. They describe the methods developed for each stage and outline the difficulties encountered, the solutions devised, and the appraisal tools developed. Although many of the problems encountered were related to the critical assessment of qualitative research, the authors argue that the method of systematic review can be adapted for use with different data andacross disciplines.

Evidence based guidelines on symptom control, psychological support, and bereavement are available to facilitate a “good death”

A task group of the Science Committee of the Association for Palliative Medicine of Great Britain and Ireland (APM) was convened to produce some up-to-date, evidence-based, practical, clinical guidelines on the management of cancer-related breakthrough pain in adults. On the basis of a review of the literature, the task group was unable to make recommendations about any individual interventions, but was able to make a series of 12 recommendations about certain generic strategies. However, most of the aforementioned recommendations are based on limited evidence (i.e., case series, expert opinion). The task group also proposed a definition of breakthrough pain, and some diagnostic criteria for breakthrough pain.

Although working with cancer patients is considered stressful, palliative care staff experience similar levels of psychological distress and lower levels of burnout than staff working in other specialties. There are few empirical studies in palliative care to explain this. Since working in a stressful job does not inevitably lead to psychological distress, the antecedent factors that promote resilience and maintain a sense of well-being are worthy of study. This qualitative study used interpretative phenomenological analysis (IPA) to describe hospice nurses' experiences of work. During the analysis, themes emerged relating to the underlying interpersonal factors that influenced the nurses' decisions to begin and continue working in palliative care, and their attitudes towards life and work. The emergent themes were compared with the theoretical personality constructs of hardiness and sense of coherence, and this comparison highlighted many similarities. The nurses showed high levels of commitment, and imputed a sense of meaning and purpose to their work. An area of divergence was their response to change, and this is discussed in relation to hardiness and sense of coherence. The implications for staff well-being, and for staff training and support, which, in turn, may impact on the quality of patient care, are discussed.

In 1991, a debate at the European Parliament on euthanasia stimulated discussion at all levels in Europe. Subsequently, the Board of Directors of the EAPC organised a working session together with two experts to help them clarify the position the organisation should adopt towards euthanasia. The experts collaborated with the Board of Directors on a document and in 1994 the EAPC produced a first statement, Regarding euthanasia, published in the official journal of the EAPC – the European Journal of Palliative Care . In February 2001, the EAPC Board asked an expert group to form an Ethics Task Force to review the subject and advise the organisation accordingly.

BACKGROUND: Caring for someone with dementia is one of the most challenging caring roles. The need for support for family caregivers has been recognized for some time but is often still lacking. With an aging population, demand on health and social care services is growing, and the population is increasingly looking to the internet for information and support. OBJECTIVE: In this review, we aimed to (1) identify the key components of existing internet-based interventions designed to support family caregivers of people with dementia, (2) develop an understanding of which components are most valued by caregivers, and (3) consider the evidence of effectiveness of internet-based interventions designed to support family caregivers of people with dementia. METHODS: We conducted a systematic search of online databases in April 2018. We searched reference lists and tracked citations. All study designs were included. We adopted a narrative synthesis approach with thematic analysis and tabulation as tools. RESULTS: We identified 2325 studies, of which we included 40. The interventions varied in the number and types of components, duration and dose, and outcomes used to measure effectiveness. The interventions focused on (1) contact with health or social care providers, (2) peer interaction, (3) provision of information, (4) decision support, and (5) psychological support. The overall quality of the studies was low, making interpretation and generalizability of the effectiveness findings difficult. However, most studies suggested that interventions may be beneficial to family caregiver well-being, including positive impacts on depression, anxiety, and burden. Particular benefit came from psychological support provided online, where several small randomized controlled trials suggested improvements in caregiver mental health. Provision of information online was most beneficial when tailored specifically for the individual and used as part of a multicomponent intervention. Peer support provided in online groups was appreciated by most participants and showed positive effects on stress. Finally, online contact with a professional was appreciated by caregivers, who valued easy access to personalized practical advice and emotional support, leading to a reduction in burden and strain. CONCLUSIONS: Although mixed, the results indicate a positive response for the use of internet-based interventions by caregivers. More high-quality studies are required to identify the effectiveness of internet interventions aimed at supporting family caregivers, with particular focus on meeting the needs of caregivers during the different stages of dementia.

BACKGROUND: In recognition of the ongoing discussion on euthanasia and physician-assisted suicide, the Board of Directors of the European Association for Palliative Care commissioned this white paper from the palliative care perspective. AIM: This white paper aims to provide an ethical framework for palliative care professionals on euthanasia and physician-assisted suicide. It also aims to provide an overview on the available evidence as well as a discourse of ethical principles related to these issues. DESIGN: Starting from a 2003 European Association for Palliative Care position paper, 21 statements were drafted and submitted to a five-round Delphi process PARTICIPANTS: A panel with 17 experts commented on the paper in round 1. Board members of national palliative care or hospice associations that are collective members of European Association for Palliative Care were invited to an online survey in rounds 2 and 3. The expert panel and the European Association for Palliative Care board members participated in rounds 4 and 5. This final version was adopted as an official position paper of the European Association for Palliative Care in April 2015. RESULTS: Main topics of the white paper are concepts and definitions of palliative care, its values and philosophy, euthanasia and physician-assisted suicide, key issues on the patient and the organizational level. The consensus process confirmed the 2003 European Association for Palliative Care white paper and its position on the relationship between palliative care and euthanasia and physician-assisted suicide. CONCLUSION: The European Association for Palliative Care feels that it is important to contribute to informed public debates on these issues. Complete consensus seems to be unachievable due to incompatible normative frameworks that clash.

BACKGROUND: Professional identity formation (PIF) in medical students is a multifactorial phenomenon, shaped by ways that clinical and non-clinical experiences, expectations and environmental factors merge with individual values, beliefs and obligations. The relationship between students' evolving professional identity and self-identity or personhood remains ill-defined, making it challenging for medical schools to support PIF systematically and strategically. Primarily, to capture prevailing literature on PIF in medical school education, and secondarily, to ascertain how PIF influences on medical students may be viewed through the lens of the ring theory of personhood (RToP) and to identify ways that medical schools support PIF. METHODS: A systematic scoping review was conducted using the systematic evidence-based approach. Articles published between 1 January 2000 and 1 July 2020 related to PIF in medical students were searched using PubMed, Embase, PsycINFO, ERIC and Scopus. Articles of all study designs (quantitative and qualitative), published or translated into English, were included. Concurrent thematic and directed content analyses were used to evaluate the data. RESULTS: A total of 10443 abstracts were identified, 272 full-text articles evaluated, and 76 articles included. Thematic and directed content analyses revealed similar themes and categories as follows: characteristics of PIF in relation to professionalism, role of socialization in PIF, PIF enablers and barriers, and medical school approaches to supporting PIF. DISCUSSION: PIF involves iterative construction, deconstruction and inculcation of professional beliefs, values and behaviours into a pre-existent identity. Through the lens of RToP, factors were elucidated that promote or hinder students' identity development on individual, relational or societal levels. If inadequately or inappropriately supported, enabling factors become barriers to PIF. Medical schools employ an all-encompassing approach to support PIF, illuminating the need for distinct and deliberate longitudinal monitoring and mentoring to foster students' balanced integration of personal and professional identities over time.

•Anxiety and depressive disorders are common in patients with cancer.•A higher prevalence seen in patients with cancer than the general population is often underrecognised.•Psychotherapy, cognitive behavioural therapy and mindfulness-based therapies are effective treatments.•Psychopharmacological treatments have been shown to be effective treatments of anxiety and depressive disorders.

The use of complementary therapies, such as massage and aromatherapy massage, is rising in popularity among patients and healthcare professionals. They are increasingly being used to improve the quality of life of patients, but there is little evidence of their efficacy. This study assessed the effects of massage and aromatherapy massage on cancer patients in a palliative care setting. We studied 103 patients, who were randomly allocated to receive massage using a carrier oil (massage) or massage using a carrier oil plus the Roman chamomile essential oil (aromatherapy massage). Outcome measurements included the Rotterdam Symptom Checklist (RSCL), the State-Trait Anxiety Inventory (STAI) and a semi-structured questionnaire, administered 2 weeks postmassage, to explore patients' perceptions of massage. There was a statistically significant reduction in anxiety after each massage on the STAI (P < 0.001), and improved scores on the RSCL: psychological (P < 0.001), quality of life (P < 0.01), severe physical (P < 0.05), and severe psychological (P < 0.05) subscales for the combined aromatherapy and massage group. The aromatherapy group's scores improved on all RSCL subscales at the 1% level of significance or better, except for severely restricted activities. The massage group's scores improved on four RSCL subscales but these improvements did not reach statistical significance. Massage with or without essential oils appears to reduce levels of anxiety. The addition of an essential oil seems to enhance the effect of massage and to improve physical and psychological symptoms, as well as overall quality of life.

Constipation is one of the most common problems in patients receiving palliative care and can cause extreme suffering and discomfort. The aims of this study are to raise awareness of constipation in palliative care, provide clear, practical guidance on management and encourage further research in the area. A pan-European working group of physicians and nurses with significant experience in the management of constipation in palliative care met to evaluate the published evidence and produce these clinical practice recommendations. Four potentially relevant publications were identified, highlighting a lack of clear, practical guidance on the assessment, diagnosis and management of constipation in palliative care patients. Given the limited data available, our recommendations are based on expert clinical opinion, relevant research findings from other settings and best practice from the countries represented. Palliative care patients are at a high risk of constipation, and while general principles of prevention should be followed, pharmacological treatment is often necessary. The combination of a softener and stimulant laxative is generally recommended, and the choice of laxatives should be made on an individual basis. The current evidence base is poor and further research is required on many aspects of the assessment, diagnosis and management of constipation in palliative care.

OBJECTIVES: The aim of this national survey was to explore the impact of COVID-19 public health measures on access to social support services and the effects of closures of services on the mental well-being of older people and those affected by dementia. METHODS: A UK-wide online and telephone survey was conducted with older adults, people with dementia, and carers between April and May 2020. The survey captured demographic and postcode data, social support service usage before and after COVID-19 public health measures, current quality of life, depression, and anxiety. Multiple linear regression analysis was used to explore the relationship between social support service variations and anxiety and well-being. RESULTS: -tests showed that the mean hour of weekly social support service usage and the number of people having accessed various services was significantly reduced post COVID-19. Multiple regression analyses showed that higher variations in social support service hours significantly predicted increased levels of anxiety in people with dementia and older adults, and lower levels of mental well-being in unpaid carers and older adults. CONCLUSIONS: Being unable to access social support services due to COVID contributed to worse quality of life and anxiety in those affected by dementia and older adults across the UK. Social support services need to be enabled to continue providing support in adapted formats, especially in light of continued public health restrictions for the foreseeable future.

The view that palliative care should move beyond cancer is widely endorsed, however, there remains a lack of clarity about the level at which this should occur. In order to target the palliative approach effectively, the value of more detailed and localized needs assessment becomes apparent. This paper provides evidence from a study commissioned by a department of public health, where the focus was the palliative care needs of an individual with chronic obstructive airways disease (COAD). Over a six-month period, 63 individuals in the district were interviewed about their experiences of living with COAD and the services utilized, using a combination of qualitative and quantitative research methods. The findings revealed a poor quality of life, relating to a high degree of social isolation and emotional distress, associated with low physical functioning and disability, and physical symptoms. Current service provision focused on acute exacerbations. Consequently, there is a need to manage the health and social care interface more effectively, with a shift in emphasis from reactive ad hoc provision, which is where the palliative approach to care could be best suited to meet the needs identified.

BACKGROUND: Meeting the needs of relatives when a family member is dying can help facilitate better psychological adjustment in their grief. However, end of life experiences for families are likely to have been deleteriously impacted by the COVID-19 crisis. Understanding how families' needs can be met during a global pandemic will have current/future relevance for clinical practice and policy. AIM: To explore relatives' experiences and needs when a family member was dying during the COVID-19 pandemic. DESIGN: Interpretative qualitative study using semi-structured interviews. Data were analysed thematically. SETTING/PARTICIPANTS: A total of 19 relatives whose family member died during the COVID-19 pandemic in the United Kingdom. RESULTS: In the absence of direct physical contact, it was important for families to have a clear understanding of their family member's condition and declining health, stay connected with them in the final weeks/days of life and have the opportunity for a final contact before they died. Health and social care professionals were instrumental to providing these aspects of care, but faced practical challenges in achieving these. Results are presented within three themes: (1) entering into the final weeks and days of life during a pandemic, (2) navigating the final weeks of life during a pandemic and (3) the importance of 'saying goodbye' in a pandemic. CONCLUSIONS: Health and social care professionals can have an important role in mitigating the absence of relatives' visits at end of life during a pandemic. Strategies include prioritising virtual connectedness and creating alternative opportunities for relatives to 'say goodbye'.

CONTEXT: The lack of palliative medicine (PM) education has been identified as a barrier to the development of the discipline. A number of international institutions have called for its implementation within undergraduate medical curricula. OBJECTIVES: The objectives are to describe the situation of undergraduate PM education in Europe and to propose a scoring system to evaluate its status. METHODS: This descriptive study was conducted with data provided by key experts from countries of the World Health Organization European Region (n = 53). A numerical scoring system was developed through consensus techniques. RESULTS: Forty-three countries (81%) provided the requested information. In 13 countries (30%), a PM course is taught in all medical schools, being compulsory in six of them (14%). In 15 countries (35%), PM is taught in at least one university. In 14 countries (33%), PM is not taught within medical curricula. A full professor of PM was identified in 40% of countries. Three indicators were developed to construct a scale (rank 0-100) of educational development: 1) proportion of medical schools that teach PM (weight = 32%); 2) proportion of medical schools that offer PM as a compulsory subject (weight = 40%); 3) total number of PM professors (weight = 28%). The highest level of PM educational development was found in Israel, Norway, the U.K., Belgium, France, Austria, Germany, and Ireland. CONCLUSION: PM is taught in a substantial number of undergraduate medical programs at European universities, and a qualified teaching structure is emerging; however, there is a wide variation in the level of PM educational development between individual countries.

Risk is frequently invoked in contemporary accounts of ill health, but its construction is often constrained by a rationalist perspective that focuses on physical causes and functional outcomes, and that presents risk as external to the self and predictable. This paper describes an empirical study of the ways in which risk was realised and managed in a day hospital for older people. An ethnographic approach, with participant observation and semi-structured interviews, and discourse analysis were used to explore these issues with the staff and fifteen users. Whilst the service providers were orientated to the management of physical risk, as through the regimes for administering medication and their attention to risk reduction in the physical environment, the service users were more concerned with the risk to their personal and social identities, and they more frequently described its manifestations in inter-personal exchanges, sometimes as infantalisation and stereotyping. The paper develops this understanding of the potential for falls among older people to elucidate a broader interpretation of risk, and reveals that it is commonly constructed as a challenge to a person's self-image and identity. Such constructions help to explain older people's responses to complex health problems and to the services and treatments that attempt to solve them.

BACKGROUND: Medical students have traditionally received little education in palliative care. However, in 1999, as part of a revised medical curriculum, Year 4 undergraduates at Liverpool University participated in a 2-week programme of education in palliative care. To assess the effect of the education programme, 2 assessment scales were identified: the Self-efficacy in Palliative Care Scale (SEPC) (assessing efficacy in communication, patient management and multiprofessional teamworking) and the Thanatophobia Scale (assessing attitudes towards palliative care). The aim of this study was to examine the psychometric properties of these scales. METHODS: The scales were examined by 5 palliative care doctors for content validity and appropriate wording. Following this, the SEPC and Thanatophobia Scales were completed by the undergraduates (n = 139) prior to and after completion of the education programme. RESULTS: Both scales were analysed independently on pre- and post-test scores. Cronbach's alphas of 0.84-0.85 and 0.92-0.95 were recorded, respectively, indicating high reliability. Varimax rotated principal components analysis of the SEPC Scale suggested 3 distinct factors, as theoretically expected, with high factor loadings of 0.45-0.89 at pre- and post-test. Principal components analysis of the Thanatophobia Scale suggested only 1 factor underlies the scale, as theoretically expected. All 7 items had high factor loadings of 0.60-0.81 at pre- and post-test. CONCLUSIONS: The results suggest that the SEPC and Thanatophobia Scales are valid and reliable assessment scales that may be of use when evaluating the impact of an education programme.

BACKGROUND: Mentoring's success in enhancing a mentee's professional and personal development, and a host organisations' reputation has been called into question, amidst a lack of effective tools to evaluate mentoring relationships and guide oversight of mentoring programs. A scoping review is proposed to map available literature on mentoring assessment tools in Internal Medicine to guide design of new tools. OBJECTIVE: The review aims to explore how novice mentoring is assessed in Internal Medicine, including the domains assessed, and the strengths and limitations of the assessment methods. METHODS: Guided by Levac et al.'s framework for scoping reviews, 12 reviewers conducted independent literature reviews of assessment tools in novice mentoring in PubMed, Embase, Scopus, ERIC, Cochrane, GreyLit, Web of Science, Open Dissertations and British Education Index databases. A 'split approach' saw research members adopting either Braun and Clarke's approach to thematic analysis or directed content analysis to independently evaluate the data and improve validity and objectivity of the findings. RESULTS: 9662 abstracts were identified, 187 full-text articles reviewed, and 54 full-text articles included. There was consensus on the themes and categories identified through the use of the split approach, which were the domains assessed and methods of assessment. CONCLUSION: Most tools fail to contend with mentoring's evolving nature and provide mere snap shots of the mentoring process largely from the mentee's perspective. The lack of holistic, longitudinal and validated assessments propagate fears that ethical issues in mentoring are poorly recognized and addressed. To this end, we forward a framework for the design of 'fit for purpose' multi-dimensional tools. PRACTICE POINTS: Most tools focus on the mentee's perspective, do not consider mentoring's evolving nature and fail to consider mentoring holistically nor longitudinallyA new tool capable of addressing these gaps must also consider inputs from all stakeholders and take a longitudinal perspective of mentoring.

BACKGROUND: Empathy is pivotal to effective clinical care. Yet, the art of nurturing and assessing empathy in medical schools is rarely consistent and poorly studied. To inform future design of programs aimed at nurturing empathy in medical students and doctors, a review is proposed. METHODS: This systematic scoping review (SSR) employs a novel approach called the Systematic Evidence Based Approach (SEBA) to enhance the reproducibility and transparency of the process. This 6-stage SSR in SEBA involved three teams of independent researchers who reviewed eight bibliographic and grey literature databases and performed concurrent thematic and content analysis to evaluate the data. RESULTS: In total, 24429 abstracts were identified, 1188 reviewed, and 136 included for analysis. Thematic and content analysis revealed five similar themes/categories. These comprised the 1) definition of empathy, 2) approaches to nurturing empathy, 3) methods to assessing empathy, 4) outcome measures, and 5) enablers/barriers to a successful curriculum. CONCLUSIONS: Nurturing empathy in medicine occurs in stages, thus underlining the need for it to be integrated into a formal program built around a spiralled curriculum. We forward a framework built upon these stages and focus attention on effective assessments at each stage of the program. Tellingly, there is also a clear need to consider the link between nurturing empathy and one's professional identity formation. This foregrounds the need for more effective tools to assess empathy and to better understand their role in longitudinal and portfolio based learning programs.

PURPOSE: The majority of dying patients do not have access to necessary drugs to alleviate their most common symptoms, despite evidence of drug efficacy. Our aim was to explore the degree of consensus about appropriate pharmacological treatment for common symptoms in the last days of life for patients with cancer, among physicians working in specialist palliative care. MATERIAL AND METHODS: Within OPCARE9, a European Union seventh framework project aiming to optimize end-of-life cancer care, we conducted a Delphi survey among 135 palliative care clinicians in nine countries. Physicians were initially asked about first and second choice of drugs to alleviate anxiety, dyspnea, nausea and vomiting, pain, respiratory tract secretions (RTS), as well as terminal restlessness. RESULTS: Based on a list of 35 drugs mentioned at least twice in the first round (n=93), a second Delphi round was performed to determine ≤ 5 essential drugs for symptom alleviation in the last 48 hours of life that should be available even outside specialist palliative care. There was ≥ 80% consensus among the participants (n=90) regarding morphine, midazolam, and haloperidol as essential drugs. For RTS, there was consensus about use of an antimuscarinic drug, with 9%-27% of the physicians each choosing one of four different drugs. CONCLUSION: Based on this consensus opinion and other literature, we suggest four drugs that should be made available in all settings caring for dying patients with cancer, to decrease the gap between knowledge and practice: morphine (i.e., an opioid), midazolam (a benzodiazepine), haloperidol (a neuroleptic), and an antimuscarinic.