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.

Moral Emotions in Palliative Care: Empirical Insights from Austria and Canada

Research aims: Moral emotions as one specific group of emotions play a vital role in delivering palliative care as e.g. ethical issues and moral distress belong to daily routine.
Moral emotions are oriented to the welfare of other persons or the society as a whole. To better understand moral emotions in Palliative Care the aims of the presented study are to ana- lyze care situations from Austria and Canada in different care settings and identify families of moral emotions on one hand and describe influencing contextual factors on the other hand. Methods: Within a qualitative study design a reanalysis of Austrian narratives on ethical issues and Canadian narra- tives on moral distress were conducted. Data in Austria encompass 36 narratives that were generated through qual- itative questionnaires in nursing homes. Canadian data are based on qualitative interviews with home care palliative specialists and encompass 47 critical incidents. The reanal- ysis of data was conducted with narrative analysis. Results: Preliminary results show that moral emotions in palliative care can be found in families around “empathy and relatedness”, “sadness, isolation and bereavement���, “anger, frustration and powerlessness”, “guilt and shame” and “being touched and feel close”. Contextual factors influencing moral emotions can be summarized as “suffer- ing and decline of client”, “expectations and dynamics of family”, “structural conflicts and power issues” and “lack of resources and information”.
Conclusion: The diversity of moral emotions reflects the everyday experiences in palliative care. It became obvious that most of the moral emotions that have been expressed appear to be interconnected within a bundle of other emo- tions. Contextual factors influencing moral emotions in pal- liative care are relatively independent of care settings. In Palliative Care moral emotions and their contextual factors constitute an important source of insight for reflection in organizational ethics.

Predictors of caregiver burden across the home-based palliative care trajectory in Ontario, Canada

Family caregivers of patients enrolled in home-based palliative care programmes provide unpaid care and assistance with daily activities to terminally ill family members. Caregivers often experience caregiver burden, which is an important predictor of anxiety and depression that can extend into bereavement. We conducted a longitudinal, prospective cohort study to comprehensively assess modifiable and non-modifiable patient and caregiver factors that account for caregiver burden over the palliative care trajectory. Caregivers (n = 327) of patients with malignant neoplasm were recruited from two dedicated home-based palliative care programmes in Southern Ontario, Canada from 1 July 2010 to 31 August 2012. Data were obtained from bi-weekly telephone interviews with caregivers from study admission until death, and from palliative care programme and home-care agency databases. Information collected comprised patient and caregiver demographics, utilisation of privately and publicly financed resources, patient clinical status and caregiver burden. The average age of the caregivers was 59.0 years (SD: 13.2), and almost 70% were female. Caregiver burden increased over time in a non-linear fashion from study admission to patient death. Increased monthly unpaid care-giving time costs, monthly public personal support worker costs, emergency department visits and low patient functional status were associated with higher caregiver burden. Greater use of hospice care was associated with lower burden. Female caregivers tended to report more burden compared to men as death approached, and burden was higher when patients were male. Low patient functional status was the strongest predictor of burden. Understanding the influence of modifiable and non-modifiable factors on the experience of burden over the palliative trajectory is essential for the development and targeting of programmes and policies to support family caregivers and reduce burden. Supporting caregivers can have benefits such as improved caregiver health outcomes, and enhancing their ability to meet care-giving demands, thereby potentially allowing for longer patient care in the home setting.

National Office for Suicide Prevention annual report 2010

International research informs us that any economic downturn leads to an increase in suicides. In one recent article in the Lancet it was stated that a 1.0% increase in unemployment led to 0.7% increase in suicides. Such analysis is startling and in Ireland more than relevant as our suicide numbers rose dramatically in 2009 and 2010. Provisional figures for 2009 indicated a record number of 527 recorded suicides and even though there was a slight fall in 2010 the figure remains unacceptably high. It is likely that when the year of occurrence figures for these years are published the numbers will be even higher This year we have included a section in Chapter 5 on the year on year difference between ‘provisional’ (year of registration) data and ‘official’ (year of occurrence) data which highlights the reason why these two data sets cannot be directly compared. We also acknowledge that some undetermined deaths can also be classified as suicides. Ongoing analysis of this data is therefore important. What is particularly worrying and perhaps not unexpected is the rise in suicides in the middle age groups, both men and women. Such a dramatic increase can largely be attributed to the fracturing and resulting stress and pressure on individuals which has occurred in our society due to the economic downturn.   .

Self-harm, suicide and risk: helping people who self-harm. Final report of a working group.

The focus of this report is to enquire into and report on why people harm and kill themselves and to consider the role (including the limits of the role) that psychiatrists and other mental healthcare professionals play in their care and treatment. The experiences and views of people who harm themselves as well as those of their carers, health professionals and third-sector workers are central to this enquiry. As there is much policy and guidance on self-harm and suicide prevention, the report does not attempt to retrace this same ground but rather examines the evidence of practice on the ground, including the implementation of the National Institute for Health and Clinical Excellence (NICE) guidelines on self-harm (National Collaborating Centre for Mental Health, 2004). This report is the second in the Royal College of Psychiatristsââ,¬â"¢ programme of work on the broad issue of risk. The College report Rethinking Risk to Others was published in July 2008 (Royal College of Psychiatrists, 2008a) and a new Working Group was set up under the chairmanship of John, Lord Alderdice, to examine risk, self-harm and suicide. This clinical issue is an integral part of the role of the psychiatrist in ensuring the good care and treatment of patients. Our central theme is that the needs, care, well-being and individual human dilemma of the person who harms themselves should be at the heart of what we as clinicians do. Public health policy has a vital role to play and psychiatrists must be involved and not leave these crucial political and managerial decisions to those who are not professionally equipped to appreciate the complexities of self-harm and suicide. But we must never forget that we are not just dealing with social phenomena but with people who are often at, and beyond the limit of what they can emotionally endure. Their aggressive acts towards themselves can be difficult to understand and frustrating to address, but this is precisely why psychiatrists need to be involved to bring clarity to the differing causes for the self-destructive ways in which people act and to assist in managing the problems for the people concerned, including family, friends and professional carers, who sometimes find themselves at the end of their tether in the face of such puzzling and destructive behaviour.

Demographic trends in suicide in the UK and Ireland 1980 - 2010.

Background Ireland has the 17th highest suicide rate in the EU and the 4th highest among 15 to 24-year-old males (WHO 2012). Suicide is the leading cause of death in this age group; death by hanging accounted for 69 % of suicides in 2010. Methods This study examines youth suicide rates from 1980 to 2010 in Ireland and compares them to the rates in Northern Ireland, Scotland, England and Wales. Irish data were obtained from the Central Statistics Office and their annual reports on Vital Statistics. Northern Irish data were obtained from the Northern Ireland Statistics and Research Agency website; Scottish data were from the General Register Office for Scotland and English/Welsh data from the Office for National Statistics website. Results There has been a threefold increase in young male suicide in Ireland over the past three decades (8.9 - 29.7 per 100,000). In contrast, there has been approximately a threefold reduction in deaths by road traffic accidents in young men in the same period (42.7 - 16.2 per 100,000). Suicide rates in young men are similar in Scotland and Northern Ireland for the same period but are 50 % lower in England and Wales. Despite the rates of hanging as a method of suicide increasing in all jurisdictions, the overall rate in England and Wales has continued to decline. Conclusion The suicide rate in Ireland remains very high and strategies to address this are urgently required. Our study indicates that national suicide prevention strategies can be effective.

The iceberg of suicide and self-harm in Irish adolescents: a population-based study

PURPOSE Suicide is a leading cause of death among adolescents. Self-harm is the most important risk factor for suicide, yet the majority of self-harm does not come to the attention of health services. The purpose of this study was to establish the relative incidence of adolescent suicide, hospital-treated self-harm and self-harm in the community. METHODS Annual suicide rates were calculated for 15-17 year-old in the Cork and Kerry region in Ireland based on data from the Central Statistics Office. Rates of hospital-treated self-harm were collected by the Irish National Registry of Deliberate Self-Harm. Rates of self-harm in the community were assessed using a survey of 3,881 adolescents, the Child and Adolescent Self-harm in Europe study. RESULTS The annual suicide rate was 10/100,000. Suicide was six times more common among boys than girls. The annual incidence rate of hospital-treated self-harm was approximately 344/100,000, with the female rate almost twice the male rate. The rate of self-harm in the community was 5,551/100,000, and girls were almost four times more likely to report self-harm. For every boy who died by suicide, 16 presented to hospital with self-harm and 146 reported self-harm in the community. For every female suicide, 162 girls presented to hospital with self-harm and 3,296 reported self-harm. CONCLUSIONS Gender differences in relative rates of self-harm and suicide are very large, with boys who have harmed themselves at particularly high risk of suicide. Knowledge of the relative incidence of self-harm and suicide in adolescents can inform prevention programmes and services.

Preventing suicide: a global imperative.

Every 40 seconds a person dies by suicide somewhere in the world. "Preventing suicide: a global imperative" is the first WHO report of its kind. It aims to increase awareness of the public health significance of suicide and suicide attempts, to make suicide prevention a higher priority on the global public health agenda, and to encourage and support countries to develop or strengthen comprehensive suicide prevention strategies in a multi-sectoral public health approach. The report provides a global knowledge base on suicide and suicide attempts as well as actionable steps for countries based on their current resources and context to move forward in suicide prevention.

Psychotherapeutic work with Families with Life-threatening Maternal Illness

This exploratory research study describes a child and adolescent psychotherapeutic clinical service offered to children/adolescents and their families with mothers with a life-threatening illness. The clinical service itself was also exploratory in nature. The research objectives of the study were (i) to explore whether this form of clinical work could be beneficial for such families in relieving distress and supporting their development; (ii) to discover the factors at play within and between the family members using an adaptation of Grounded Theory research methodology; and (iii) to add to the knowledge base for adults – family members and professionals – relating to, and dealing with, such children and adolescents. Descriptions and discussion of the therapeutic input and research study are given. Symptoms, which included emotional, behavioural, psychological, learning, and interpersonal difficulties, decreased in all the children/adolescents who were offered clinical treatment within an outpatient multidisciplinary Tier 3 Child and Adolescent Service (CAMHS). Six Themes were identified across the cases and these were named: Engagement, Parental Concern, Impact of Mother’s Illness, Defences, Sustaining Factors and Feeling Different. These Themes are discussed in the light of relevant published research. A literature review was undertaken and focuses on: epidemiological context; children’s understanding of death; impact of parental bereavement in childhood; the mourning process; anticipatory grief; psychoanalysis: mourning and trauma; children’s play and drawings as communication; and psychosocial therapeutic services. The thesis has particular relevance for child and adolescent psychotherapists and other mental health professionals who work within hospital and hospice settings.

Psychotherapeutic work with Families with Life-threatening Maternal Illness

This exploratory research study describes a child and adolescent psychotherapeutic clinical service offered to children/adolescents and their families with mothers with a life-threatening illness. The clinical service itself was also exploratory in nature. The research objectives of the study were (i) to explore whether this form of clinical work could be beneficial for such families in relieving distress and supporting their development; (ii) to discover the factors at play within and between the family members using an adaptation of Grounded Theory research methodology; and (iii) to add to the knowledge base for adults – family members and professionals – relating to, and dealing with, such children and adolescents. Descriptions and discussion of the therapeutic input and research study are given. Symptoms, which included emotional, behavioural, psychological, learning, and interpersonal difficulties, decreased in all the children/adolescents who were offered clinical treatment within an outpatient multidisciplinary Tier 3 Child and Adolescent Service (CAMHS). Six Themes were identified across the cases and these were named: Engagement, Parental Concern, Impact of Mother’s Illness, Defences, Sustaining Factors and Feeling Different. These Themes are discussed in the light of relevant published research. A literature review was undertaken and focuses on: epidemiological context; children’s understanding of death; impact of parental bereavement in childhood; the mourning process; anticipatory grief; psychoanalysis: mourning and trauma; children’s play and drawings as communication; and psychosocial therapeutic services. The thesis has particular relevance for child and adolescent psychotherapists and other mental health professionals who work within hospital and hospice settings.

Pediatric Oncology Palliative Care: Experiences of General Practitioners and Bereaved Parents

Objective: This qualitative study set in the West Midlands region of the United Kingdom, aimed to examine the role of the general practitioner (GP) in children's oncology palliative care from the perspective of GPs who had cared for a child with cancer receiving palliative care at home and bereaved parents. Methods: One-to-one semi-structured interviews were undertaken with 18 GPs and 11 bereaved parents following the death. A grounded theory data analysis was undertaken; identifying generated themes through chronological comparative data analysis. Results: Similarity in GP and parent viewpoints was found, the GPs role seen as one of providing medication and support. Time pressures GPs faced influenced their level of engagement with the family during palliative and bereavement care and their ability to address their identified learning deficits. Lack of familiarity with the family, coupled with an acknowledgment that it was a rare and could be a frightening experience, also influenced their level of interaction. There was no consistency in GP practice nor evidence of practice being guided by local or national policies. Parents lack of clarity of their GPs role resulted in missed opportunities for support. Conclusions: Time pressures influence GP working practices. Enhanced communication and collaboration between the GP and regional childhood cancer centre may help address identified GP challenges, such as learning deficits, and promote more time-efficient working practices through role clarity. Parents need greater awareness of their GP's wide-ranging role; one that transcends palliative care incorporating bereavement support and on-going medical care for family members

Undertaking Sensitive Interviews: a Researcher’s Experience of Interviewing Bereaved Parents and Family GPs

The presentation describes the researcher’s experience of undertaking sensitive interviews. Background The interviews form part of a current study that is examining bereaved parents’ experience of caring for their child at home as well as the experience of their GP. This study builds on earlier work that found general practitioners (GPs) were at times uncertain of their role in paediatric palliative care and questioned whether their involvement had been beneficial to the child and family. The rarity of childhood cancer deaths makes it difficult for GPs to develop or maintain palliative care knowledge and skills yet the GP is perceived as the gatekeeper for care within the community. Presentation aim To describe the process of both the preparation for, and undertaking of, sensitive interviews. Study methodology The methodology incorporates tape-recorded semi-structured interviews, thematic framework analysis and Q methodology (QM). QM will be used to capture the experiences of GPs who have cared for a child with cancer receiving palliative care as well the perspectives of care experienced by the families. The semi-structured interview sample comprises 10 families (parents/guardians) whose child has been treated at a regional childhood cancer centre and their GPs. A further 40-60 GPs will be involved in the QM. Findings The preparation for these interviews will be discussed and compared to the supportive bereavement visits undertaken within the researcher’s role as a paediatric Macmillan nurse. The experience of undertaking the interviews will be exemplified with findings from the initial and the current, study. Papers’ contribution The researcher’s experience of preparing for and undertaking sensitive interviews may prove beneficial to other researchers.

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.

Sorg och sorgebearbetning hos anhöriga vid väntade och plötsliga dödsfall - En litteraturstudie

Introduktion: När en närstående dör, oavsett om det är väntat eller sker plötsligt, drabbas anhöriga av sorg. Sorg innefattar fysiska, känslomässiga, kognitiva, andliga och sociala utmaningar. För att kunna hantera dessa utmaningar är det viktigt att bearbeta sorgen.  Syfte: Att belysa sorgereaktioner samt förhållanden som påverkar sorgebearbetningen hos anhöriga vid väntade och plötsliga dödsfall. Metod: Studiens datainsamlingsmetod är en litteraturstudie vars resultat bygger på redan befintlig vetenskaplig litteratur. Sökningarna genomfördes i databaserna CINAHL och PubMed och resulterade i 12 artiklar. Artiklarnas resultat lästes noggrant igenom, enskilt och tillsammans.  Resultat som svarade på syftet bearbetades och delades in i två sektioner med tillhörande teman. Resultat: Litteraturstudiens resultat visar att anhöriga upplever många olika sorgereaktioner när en närstående dör. Reaktionernas intensitet varierar beroende på hur den närstående dör samt den närståendes och anhörigas relation samt ålder och den anhörigas kön. Hur sorgebearbetningen utvecklas beror på olika förhållanden: närstående och anhörigas inställning kring döden, den döendes lidande samt olika former av stöd. Slutsats: Sjuksköterskor är ofta de som först möter anhöriga efter en närståendes död. Det är därför viktigt att sjuksköterskor har kunskap om sorg för att kunna bemöta och ge god omvårdnad till dessa anhöriga samt underlätta den kommande sorgebearbetningen.