Music therapy, in tuning at the end of life

In this article music therapy is presented as a helpful tool to support the persons (and their relatives) living at the end of their life and, also, as a non pharmacological and complementary therapy in an integral and holistic medicine. What we report here comes from the direct experience, nourished after many years of interventions and reflections in oncology and palliative care units. We’re talking about silence, music, therapy, models and techniques. We will read and feel therapeutic sessions… but above all, we’re talking about life, conscience and love.

Arteterapia en el final de la vida

El arteterapia permite una aproximación creativa biográfica particularmente valiosa en la etapa final de la vida. La persona enferma presenta múltiples necesidades – físicas, emocionales, sociales y espirituales – que solo una atención holística puede pretender abarcar, tal como lo contempla la filosofía de los cuidados paliativos. El arteterapeuta integrado en el equipo interdisciplinar contribuye a aliviar y acompañar el sufrimiento del paciente y su familia. Se presentan aquí las bases teóricas y la metodología de la intervención, así como el marco sanitario en el cual se inscribe.

Nurses' experiences of pain management for people with advanced dementia approaching the end of life: a qualitative study

AIMS AND OBJECTIVES: To explore hospice, acute care and nursing home nurses' experiences of pain management for people with advanced dementia in the final month of life. To identify the challenges, facilitators and practice areas requiring further support.

BACKGROUND: Pain management in end-stage dementia is a fundamental aspect of end of life care; however, it is unclear what challenges and facilitators nurses experience in practice, whether these differ across care settings, and whether training needs to be tailored to the context of care.

DESIGN: A qualitative study using semi-structured interviews and thematic analysis to examine data.

METHODS: 24 registered nurses caring for people dying with advanced dementia were recruited from ten nursing homes, three hospices, and two acute hospitals across a region of the United Kingdom. Interviews were conducted between June 2014 and September 2015.

RESULTS: Three core themes were identified: challenges administering analgesia, the nurse-physician relationship, and interactive learning and practice development. Patient-related challenges to pain management were universal across care settings; nurse- and organisation-related barriers differed between settings. A need for interactive learning and practice development, particularly in pharmacology, was identified.

CONCLUSIONS: Achieving pain management in practice was highly challenging. A number of barriers were identified; however, the manner and extent to which these impacted on nurses differed across hospice, nursing home and acute care settings. Needs-based training to support and promote practice development in pain management in end-stage dementia is required.

RELEVANCE TO CLINICAL PRACTICE: Nurses considered pain management fundamental to end of life care provision; however, nurses working in acute care and nursing home settings may be under-supported and under-resourced to adequately manage pain in people dying with advanced dementia. Nurse-to-nurse mentoring and ongoing needs-assessed interactive case-based learning could help promote practice development in this area. Nurses require continuing professional development in pharmacology. This article is protected by copyright. All rights reserved.

The impact of a simulated intervention on attitudes of undergraduate nursing and medical students towards end of life care provision

Background: The concerns of undergraduate nursing and medical students’ regarding end of life care are well documented. Many report feelings of emotional distress, anxiety and a lack of preparation to provide care to patients at end of life and their families. Evidence suggests that increased exposure to patients who are dying and their families can improve attitudes toward end of life care. In the absence of such clinical exposure, simulation provides experiential learning with outcomes comparable to that of clinical practice. The aim of this study was therefore to assess the impact of a simulated intervention on the attitudes of undergraduate nursing and medical students towards end of life care.
Methods: A pilot quasi-experimental, pretest-posttest design. Attitudes towards end of life care were measured using the Frommelt Attitudes Towards Care of the Dying Part B Scale which was administered pre and post a simulated clinical scenario. 19 undergraduate nursing and medical students were recruited from one large Higher Education Institution in the United Kingdom.
Results: The results of this pilot study confirm that a simulated end of life care intervention has a positive impact on the attitudes of undergraduate nursing and medical students towards end of life care (p < 0.001).
Conclusions: Active, experiential learning in the form of simulation teaching helps improve attitudes of undergraduate nursing and medical students towards end of life. In the absence of clinical exposure, simulation is a viable alternative to help prepare students for their professional role regarding end of life care.

“There’s a Catch-22”. The complexities of pain management for people with advanced dementia nearing the end of life: a qualitative exploration of physicians’ perspectives

Background: Pain management is a cornerstone of palliative care. The clinical issues encountered by physicians when managing pain in patients dying with advanced dementia, and how these may impact on prescribing and treatment, are unknown. Aim: To explore physicians’ experiences of pain management for patients nearing the end of life, the impact of these on prescribing and treatment approaches, and the methods employed to overcome these challenges. Design: Qualitative, semi-structured interview study exploring: barriers to and facilitators of pain management, prescribing and treatment decisions, and training needs. Thematic analysis was used to elicit key themes. Settings/Participants: Twenty-three physicians, responsible for treating patients with advanced dementia approaching the end of life, were recruited from primary care (n=9), psychiatry (n=7) and hospice care (n=7). Results: Six themes emerged: diagnosing pain, complex prescribing and treatment approaches, side-effects and adverse events, route of administration, importance of sharing knowledge and training needs. Knowledge exchange was often practised through liaison with physicians from other specialties. Cross-specialty mentoring, and the creation of knowledge networks were believed to improve pain management in this patient population. Conclusions: Pain management in end-stage dementia is complex, requiring cross-population of knowledge between palliative care specialists and non-specialists, in addition to collateral information provided by other health professionals and patients’ families. Regular, cost- and time-effective mentoring and ongoing professional development are perceived to be essential in empowering physicians to meet clinical challenges in this area.

Statistics on Smoking Cessation Services in Northern Ireland: 2014/15

This information release, produced by the Department of Health, Social Services and Public Safety’s Information and Analysis Directorate, provides information on smoking cessation services. Data are included on the monitoring of smoking cessation services in Northern Ireland during the period 1st April 2014 to 31st March 2015. This report also provides an analysis of data collected in 2014/15 in respect of clients who set a quit date during 2013/14 (52 week follow-up). Information contained within this report was downloaded from a web based recording system. Figures here are correct as of 1st September 2015. The Ten Year Tobacco Control Strategy for Northern Ireland aims to see fewer people starting to smoke, more smokers quitting and protecting people from tobacco smoke. It is aimed at the entire population of Northern Ireland as smoking and its harmful effects cut across all barriers of class, race and gender. There is a strong relationship between smoking and inequalities, with more people dying of smoking-related illnesses in disadvantaged areas of Northern Ireland than in its more affluent areas. In order to ensure that more focused action is directed to where it is needed the most, three priority groups have been identified. They are: · Children and young people; · Disadvantaged people who smoke; and · Pregnant women, and their partners, who smoke. The Public Health Agency (PHA) is responsible for implementing the strategy and the development of cessation services is a key element of the overall aim to tackle smoking. The 2013/14 Health Survey Northern Ireland reported that 22% of adults currently smoke (23% of males and 21% of females). In addition, in 2013, the Young Persons’ Behaviour and Attitude Survey (YPBAS) found that 6% of pupils aged between and 11 and 16 smoked (7% of males and 5% of females).      

Ansiedade em face da morte em Agentes Funerários

Ao pensar na morte há um reconhecimento da vulnerabilidade humana e da própria fragilidade da vida. A morte é universal, mas experienciada de uma forma individualizada por cada um de nós, a partir da personalidade, experiências de vida, variáveis pessoais, idade, sexo, religião. Vivenciar a morte e o morrer poderá conduzir a sensações de medo e ansiedade. Os agentes funerários que lidam diariamente com a morte e com o “luto” (do corpo morto e dos familiares em relação ao ente querido que perderam) poderão estar expostos a sentimentos de ansiedade depressiva pela ativação diária do confronto com a própria morte, ou com a morte de pessoas a quem estão intimamente ligados. É objetivo deste estudo avaliar os níveis de ansiedade em face da morte em agentes funerários, e ainda explorar a eventual associação entre fatores sociodemográficos e profissionais selecionados e esta variável. A amostra é composta por 60 sujeitos de uma empresa funerária em Portugal. Os instrumentos psicométricos utilizados foram a Escala de Ansiedade face à Morte (DAQ), e um questionário sociodemográfico desenhado para o presente estudo. Os resultados globais mostram que os Agentes Funerários apresentam níveis de ansiedade face à morte estatisticamente significativos (M = 35,88; DP = 9,02). O género, a idade, religião, anos de experiência, estado civil, terem filhos, ter morrido alguém próximo ou significativo, especificidade de trabalho: ser comercial ou operacional o número de contatos, não marcam significativamente a forma como os sujeitos em estudo percecionam a sua ansiedade em face da morte. Os níveis de ansiedade aumentam entre aqueles que não tiveram formação específica para lidar com estas situações. / When thinking about death there is recognition of human vulnerability and fragility of life itself. Death is universal but experienced individually by each of us, through personality, life experiences, personal variables, age, sex, religion. Experiencing death and dying can lead to feelings of fear and anxiety. Funeral Agents who daily deal with death and with the "mourning" (the dead body and the family of the deceased) may be exposed to feelings of depressive anxiety activated by the daily confrontation with death itself or death of people who are close to them. The aim of this study is to assess the levels of anxiety in Funeral Agents when facing death, and also explore the eventual association of social-demographic and professional factors with this variable. The sample consisted of 60 subjects of a Portuguese Funeral company. The instruments used were the Death Anxiety Questionnaire (DAQ) and a socialdemographic questionnaire designed for the present study. The overall results show that Funeral Agents present anxiety levels statistically significant when facing death (M = 35.88, SD = 9.02). Gender, age, religion, years of experience, marital status, having children, the death of someone close or important, and the specificity of the job (commercial or operational agent), the number of contacts, show no statistically significant association with anxiety when facing death. However, the levels of anxiety increase among those who had had no specific formation to deal with these situations.

Palliative Care for People with Dementia: a Literature Review

With growing numbers of people dying with, and from, dementia there is a need for professionals and health-care organisations to review the access to and provision of palliative care. This literature review has identified several key themes in relation to the person dying with dementia including: diagnosis of the dying phase, appropriate timing of referral to specialist palliative care services; ethical decisions in relation to medication and nutrition; the environment; under treatment especially, for pain relief; over and burdensome treatment interventions; carer involvement; collaborative working and advance decision making.

Providing Palliative Care for the Child with Cancer: The Experience of GPs

Background Childhood cancers are rare and general practitioners (GPs) have limited experience in caring for these children and even less in providing their palliative care. Most families prefer that their child is cared for at home in the palliative phase of their illness, with professional support from those known to them (Chambers and Oakhill 1995, Vickers and Carlisle 2000, Craft and Killen 2007). A community based qualitative study examined the experiences of ten GPs following their involvement in the care of a child with cancer receiving palliative care within the family home. Methods Data collection was through 1:1 in-depth interviews and facilitated case discussion supported by field notes and grounded theory analysis (chronological comparative data analysis identifying generated themes). Social worlds theory was used as a framework to aid examination, and facilitate critical understanding, of the experiences of the GPs. Findings This presentation focuses on five of the findings relating to the experiences of the GP; the impact of minimal contact; lack of knowledge and experience, uncertain role, out of hours service provision and the emotional toll. Findings highlighted that GPs often have to re-establish their role at the child’s transition to palliative care. Factors hindering the GP in this process include a deficit of specialist knowledge and experience of paediatric palliative care and lack of role clarity. Conclusions/points of interest Strategies for enhancing the role of the Macmillan team in supporting GPs have been identified by this study, such as enhanced collaborative working. Findings have also provided further confirmation of the substantial variation in out of hours medical palliative care provision; with evidence that some GPs work beyond their remit in providing informal out of hours care. This presentation details the findings of one aspect (the experiences of GPs) of a wider study that explored the experiences of 54 community based health professionals (GPs, community nurses and allied health professionals) who had been involved in caring for a dying with cancer receiving palliative care at home (Neilson 2009).

Do GPs Make Good Research Participants?

Background Childhood cancers cause the largest numbers of deaths by disease in children aged 0-14 years1 with more than 400 children a year dying from cancer in the UK.2 Parental preference for their child to die within the family home2 coupled with the speciality of children’s palliative care medicine being still in its infancy, highlights the importance of the GP’s role in this highly specialised area of clinical practice. An understanding of the GP’s role will help inform the development of this specialty and identify best collaborative practice. A NIHR/CAT CL funded study examined the role of the GP in paediatric oncology palliative and bereavement care from the perspective of both the GP and the bereaved parent. This presentation will detail how GPs were approached and recruited, the reasons GPs declined participation and factors influencing the actual data collection. Methods The mixed method study used both qualitative and quantitative data collection methods. Phase 1: Semi-structured interviews to explore the experiences of GPs and parents. Phase 2: Q methodology with GPs who had a child with cancer on their caseload. Q methodology is a research tool that uses statistical analysis to cluster participants’ experiences according to similarity of their viewpoint Results The method and effectiveness of recruiting GPs for both phases of the study will be presented. In addition factors influencing collecting such emotive and sensitive data will be discussed. Conclusions Researcher flexibility and perseverance in participant recruitment was rewarded by the rich data collected. Findings from this study have identified four different GP role viewpoints and have provided a new dimension in understanding GP viewpoints on their role in this arena.

Les métamorphoses du rapport politique à la mort (recherche de pivots structurant la réflexion en médecine palliative)

Notre recherche explore quelques moments forts des métamorphoses du rapport politique à la mortalité sous examen des thèmes de l’interdit, de la dignité, de l’autonomie et de l’altérité. Nous dégageons des ancrages propices à nourrir la pensée actuelle en médecine palliative. Ainsi, nous livrons une enquête philosophique, appréciant pour nous Occidentaux, les influences marquantes des pensées gréco-romaine, chrétienne et moderne. Ces bases, édifiant notre monde politique, ont suscité l’émergence de la médecine palliative. C’est pourquoi, nous tentons de caractériser et de comprendre les problématiques nouvelles, dans leurs aspects politique et éthique, envisagées à l’aune des formes contemporaines d’accompagnement des mourants. Notre effort tente de discerner les aspirations et les impasses. L’étude de la métamorphose des repères fait ressortir une dissociation accentuée au fil du temps. En effet, au fur et à mesure, notre entreprise d’interprétation du fondement de ces questions politiques dévoilait : une reconnaissance universelle de l’interdit d’homicide, mais accusant une perte du lien moral au profit d’une visée amorale ; un aval unanime du respect de la dignité, mais manifestant une confusion et une division ostensible entre conceptions intrinsèque et extrinsèque ; une affirmation péremptoire de l’autonomie, mais avec une distanciation marquée au regard de la façon d’envisager la part de l’autre ; une déclinaison de liens humains reconnus de tous, mais exacerbés dans une tension artificielle entre individualisme et altruisme. Au surplus, en constatant la distance et la dislocation entre le public et le privé, entre la réclamation de fraternité et la recherche d’amicalité signifiante, nous avons envisagé la communauté palliative comme un lieu de résistance à cette décomposition menaçante au sein de la communauté politique. À terme de l’analyse, nous avons fondé les concepts « d’allonomie » et de « suspension éthique ». Il s’agit de contributions originales destinées à donner à la philosophie toute sa dimension sapientielle au service de l’accompagnement palliatif.

An interpretative phenomenological analysis of the lived experience of suicidal behaviour

Background: In Scotland, suicide prevention is a major public health challenge, with two people, on average, dying every day due to suicide. Any efforts to prevent suicide should be aided by research. Existing research on suicide is dominated by quantitative research that has largely focused on providing explanatory accounts of suicidal phenomena. Research providing rich and detailed accounts of suicidal behaviour among individuals who have directly experienced it is growing but remains relatively embryonic. This study sought to supplement existing understanding of attempted suicide specifically by exploring the processes, meaning and context of suicidal experiences among individuals with a history of attempted suicide. Methods: The study used a retrospective qualitative design with semi-structured in-depth interviews. Participants were patients (n=7) from a community mental health service in Glasgow, Scotland who had attempted suicide within the previous 12-month period. The interviews were transcribed verbatim and were analysed for recurrent themes using interpretative phenomenological analysis (IPA). Results: Three super-ordinate themes, each with inter-related sub-themes, emerged from the analysis. 1) “Intentions”: This theme explored different motives for suicide, including providing relief from upsetting feelings; a way of establishing control; and a means of communicating with others. 2) “The Suicidal Journey”: This theme explored how individuals’ thinking can change when they are suicidal, including feeling overwhelmed by a build-up of distress and a narrowing of their perspective. 3) “Suicidal Dissonance”: This theme explored how people can feel conflicted about suicide and can be fearful of the consequences of their suicidal behaviour. Conclusion: Participants’ accounts were dominated by experience of significant adversity and psychological suffering. These accounts provided valuable insights into the suicidal process, highlighting implications for clinical practice and future research.

Interveniência da integridade na relação entre idade e ansiedade face à morte em adultos idosos

Dissertação de Mestrado apresentada no Instituto Superior de Psicologia Aplicada para obtenção de grau de Mestre na especialidade de Psicologia Clínica

Using an end-of-life care pathway in acute stroke: a mixed methods study of decision-making and care experiences

Background: The evidence base on end-of-life care in acute stroke is limited, particularly with regard to recognising dying and related decision-making. There is also limited evidence to support the use of end-of-life care pathways (standardised care plans) for patients who are dying after stroke. Aim: This study aimed to explore the clinical decision-making involved in placing patients on an end-of-life care pathway, evaluate predictors of care pathway use, and investigate the role of families in decision-making. The study also aimed to examine experiences of end-of-life care pathway use for stroke patients, their relatives and the multi-disciplinary health care team. Methods: A mixed methods design was adopted. Data were collected in four Scottish acute stroke units. Case-notes were identified prospectively from 100 consecutive stroke deaths and reviewed. Multivariate analysis was performed on case-note data. Semi-structured interviews were conducted with 17 relatives of stroke decedents and 23 healthcare professionals, using a modified grounded theory approach to collect and analyse data. The VOICES survey tool was also administered to the bereaved relatives and data were analysed using descriptive statistics and thematic analysis of free-text responses. Results: Relatives often played an important role in influencing aspects of end-of-life care, including decisions to use an end-of-life care pathway. Some relatives experienced enduring distress with their perceived responsibility for care decisions. Relatives felt unprepared for and were distressed by prolonged dying processes, which were often associated with severe dysphagia. Pro-active information-giving by staff was reported as supportive by relatives. Healthcare professionals generally avoided discussing place of care with families. Decisions to use an end-of-life care pathway were not predicted by patients’ demographic characteristics; decisions were generally made in consultation with families and the extended health care team, and were made within regular working hours. Conclusion: Distressing stroke-related issues were more prominent in participants’ accounts than concerns with the end-of-life care pathway used. Relatives sometimes perceived themselves as responsible for important clinical decisions. Witnessing prolonged dying processes was difficult for healthcare professionals and families, particularly in relation to the management of persistent major swallowing difficulties.