Medicalizing meaning: demoralization syndrome and the desire to die

Objective: To critically analyse the proposed new psychiatric condition, demoralization syndrome, and the implications drawn by its proponents for the clinical-ethical status of requests by terminally ill patients for assistance to die. Method: The diagnostic features of demoralization syndrome, a proposed new psychiatric disorder, recognizable particularly in palliative care settings, are summarized. The consequences of proposed therapeutic interventions are described, one of which is relief of the desperation which motivates some demoralized patients to consider ending their lives and to seek assistance in dying. The connections between the proposed condition and the desire to die are analysed in the context of the continuing tensions surrounding the ontological status and sociopolitical implications of psychiatric categories and the pervasive medicalization of modern life. Results: The analysis suggests that by medicalizing existential cognitions at the end of life, the proposed diagnostic category also normalizes a particular moral view concerning assistance in dying. Conclusions: While further research into the issues described in this provisional syndrome may benefit some patients, the categorization of demoralization as a medical diagnosis is a questionable extension of psychiatry's influence, which could serve particular social, political and cultural views concerning the end of life.

A quantitative application of symbolic interactionism to advance directive completion by older adults

This study examined contextual and situational influences on older adults' decision to complete advance directives by means of a conceptual framework derived from symbolic interactionist theory and a cross-sectional, correlational research design. It was hypothesized that completion of advance directives among older adults would be associated with visiting or participating in the care of a terminally ill or permanently incompetent individual sustained by technology. Using a 53-item questionnaire, computer assisted telephone interviews (CATI) were conducted with 398 community dwelling adults between September and October 2003. Respondents were contacted using random-select dialing from a listed sample of 99% of household telephone numbers in one South Florida census tract. Over 90% of households in this tract include an individual age 65 or older. ^ The results revealed that contrary to most reports in the literature a substantial proportion of older adults (82%) had completed advance directives and that the link between older adults and document completion was mainly through attorneys and not mandated agents, health care professionals. Further, more than one third of older adults reported that religion/spirituality was not an important part of their life, suggesting that the recommended practice of offering religious/spiritual counseling to all those approaching death be reexamined. The hypothesis was not supported (p > .05) and is explained by the situational emphasis on the variables rather than on structural influences. In logistic regression analysis, only increasing age (p = .001) and higher education (p = < .001) were significant but explained only 10% of the variance in document completion. ^ Based on the findings, increased interdisciplinary collaboration is suggested with regard to the advance directive agenda. Since attorneys play a key role in document completion, other professions should seek their expertise and collaboration. In addition, the inclusion of a religious/spiritual preference section in all living wills should be considered as an essential part of a holistic and individually appropriate document. Implications for social work education, practice, and advocacy are discussed as well as suggestions for further research. ^

Validación de dos herramientas para la evaluación de cambios en las actitudes de alumnos en situaciones frecuentes en cuidado paliativo

Objective: To determine the psychometric properties of two scales designed to examine attitudes regarding palliative care: Comfort Scale in Palliative Care (CSPC, Pereira et al.) and Tanatophobia Scale (TS, Merrill et al.)Method: Seventy-seven students who completed an online course on psychosocial aspects of palliative care offered by the Latin American Association of Palliative Care participated in the study. They also completed the scales before and after the course. Construct validity and reliability of the CSPC and the TS were assessed using a Principal Components Analysis, internal reliability coefficient and test-retest reliability. Further, comparative statistics between the pre-course and post-course results were obtained in order to determine changes in attitudes.Results: The Principal Components Analysis showed satisfactory fit to the data. 3 components were extracted: two for the CSPC and one for the TS, which explained 55.37% of the variance. Internal consistency coefficients were satisfactory in all cases and Cronbach´s Alphas were satisfactory for all the scales, particularly for the CSPC. Test-retest reliability in t1 and t2 was found to be non significant, indicating that measures were not related in time. Regarding pre-course/post-course comparisons, significant changes in comfort assisting patients (p = 0.004) and comfort assisting families (p = 0.001) following the course were identified, but changes in thanatophobia were non significant (p > 0.05).Conclusions: both scales are valid and reliable. Attitudes regarding the practice of palliative care and how they change, particularly regarding psychosocial issues, can be accurately measured using the examined scales.

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.

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.

Constructing Personal and Couple Narratives in Late Stage Cancer: A Narrative Analysis

An increasing number of people with terminal cancer are being cared for at home, often by their partner. This study explores the identity, experiences and relationships of people caring for their partner at the end of life and how they construct their experience through personal and couple narratives. It draws upon dialogical approaches to narrative analysis to focus on caring partners and the care relationship. Six participants were recruited for the study. Two methods of data collection are used: narrative interviews and journals. Following individual case analysis, two methods of cross-narrative analysis are used: an analysis of narrative themes and an identification of narrative types. The key findings can be summarised as follows. First, in the period since their partner's terminal prognosis, participants sustained and reconstructed self and couple relationship narratives. These narratives aided the construction of meaning and coherence at a time of major biographical disruption: the anticipated loss of a partner. Second, the study highlights the complexity of spoken and unspoken narratives in terminal cancer and how these relate to individual and couple identities. Third, a typology of archetypal narratives based upon the data is identified. The blow-by-blow narratives illustrate how participants sought to construct coherence and meaning in the illness story, while champion and resilience narratives demonstrate how participants utilised positive self and relational narratives to manage a time of biographical disruption. The study highlights how this narrative approach can enhance understanding of the experiences and identities of people caring for a terminally ill partner.

The 'dis-ease' of dying: challenges in nursing care of the dying in the acute hospital setting. A qualitative observational study

BACKGROUND: Changes in health care and an ageing population have meant that more people are dying in the acute hospital setting. While palliative care principles have resulted in quality care for the dying, many patients die in an acute care, still receiving aggressive/resuscitative care. AIMS: The aims were to explore nurses' 'recognition of' and 'responsiveness to' dying patients and to understand the nurses' influence on end-of-life care. DESIGN: A qualitative approach was taken utilising non-participant observation to elicit rich data, followed by focus groups and individual semi-structured interviews for clarification. SETTING/PARTICIPANTS: This study was conducted in two acute medical wards in one health service, identified as having the highest rates of death, once palliative care and critical care areas were excluded. Twenty-five nurses consented to participate, and 20 episodes of observation were conducted. RESULTS: Nurses took a passive role in recognising dying, providing active care until a medical officer's declaration of dying. Ward design, nurse allocation and nurses' attitude to death impacts patient care. End-of-life care in a single room can have negative consequences for the dying. Nurses demonstrated varying degrees of discomfort, indicating that they were underprepared for this role. CONCLUSION: When patients are terminally ill, acknowledgement of dying is essential in providing appropriate care. It should not be assumed that all nurses are adequately prepared to provide dying care. Further work is necessary to investigate how the attitudes of nurses towards caring for dying patients in the acute hospital setting may impact care of the dying patient.

Ensuring cultural sensitivity for Muslim patients in the Australian ICU: considerations for care

Australia is a diverse and multicultural nation, made up of a population with a predominant Christian faith. Islam, the second largest religion in the world, has demonstrated significant growth in Australia in the last decade. Coming from various countries of origin and cultural backgrounds, Muslim beliefs can range from what is considered ‘traditional’ to very ‘liberal’.

It is neither possible nor practical for every intensive care clinician to have an intimate understanding of Islam and Muslim practices, and cultural variations amongst Muslims will mean that not all beliefs/practices will be applicable to all Muslims. However, being open and flexible in the way that care is provided and respectful of the needs of Muslim patients and their families is essential to providing culturally sensitive care.

This discussion paper aims to describe the Islamic faith in terms of Islamic teachings, beliefs and common practices, considering how this impacts upon the perception of illness, the family unit and how it functions, decision-making and care preferences, particularly at the end of life in the intensive care unit.

Considering Aboriginal palliative care models: the challenges for mainstream services

This review discusses palliative care and end-of-life models of care for Aboriginal people in the Australian state New South Wales, and considers Aboriginal palliative care needs by reflecting on recent literature and lessons derived from Aboriginal consultation. Aboriginal people in Australia account for a very small proportion of the population, have poorer health outcomes and their culture demonstrates a clear resistance to accessing mainstream health services which are viewed as powerful, isolating and not relevant to their culture, way of life, family and belief systems. Aboriginal people regard their land as spiritual and their culture dictates that an Aboriginal person needs to know their origins, emphasising the value placed on kin and also demonstrating a strong desire to remain within their own country. Currently Aboriginal people tend to not access palliative care services in mainstream facilities; and there is very little data on Aboriginal admissions to palliative care centres. Over the last two decades only two models of palliative care focusing on and developed in Aboriginal communities have been implemented. The seminal contribution to Aboriginal Palliative Care was in the form of a resource kit developed to support palliative care providers to examine their practice for cultural appropriateness for Aboriginal and Torres Strait Islanders. The "living model" coming from this project is adaptive and flexible, enabling implementation in different Aboriginal country as a participative process with community input. The Australian government"s National Indigenous Palliative Care Needs Study similarly indicated that Australian empirical research on Aboriginal palliative care service provision is in its infancy, and comprehensive data on the rates of Aboriginal access to palliative care services did not exist. What literature does exist is drawn together in an argument for the development and need for culturally specific Aboriginal palliative care models, which are culturally appropriate, locally accessible and delivered in collaboration and partnership with Aboriginal controlled health services. This is essential because Aboriginal people are a minority cultural group who are disconnected from mainstream health service delivery, and have a sense of cultural isolation when accessing mainstream services. It is preferable that palliative care is delivered in a collaboration between Aboriginal Controlled Health Service and mainstream palliative care services to ensure a dignified end of life for the Aboriginal person. These collaborations and partnerships are fundamental to ensure that a critical mass of Aboriginal clinicians are trained and experienced in end of life care and palliation. Developing palliative care programs within Aboriginal communities and training Aboriginal Health Workers, promoted and developed in partnership with the Aboriginal community, are important strategies to enhance palliative care service provision. Further partnerships should be championed in this collaborative process, acknowledging a need for palliative care models that fit with Aboriginal peoples" community values, beliefs, cultural/ spiritual rituals, heritage and place.

Recognising dying in acute care

The article reports on terminal care services which are offered to patients in Australia and discusses a terminal care program called the Liverpool Care Pathway which was implemented in Great Britain and is being tested in Australia. In the article the author offers her opinions on terminal care in Australia, on the Liverpool Care Pathway and on the education that Australian nurses receive the dying phase of the human life cycle.

Ideación suicida y desesperanza en pacientes con cáncer

El objetivo de la presente investigación fue identificar la relación entre ideación suicida y desesperanza en 160 pacientes con cáncer. La ideación suicida se midió a través de dos ítems de una entrevista semiestructurada, la escala de ideación suicida (ISS), el ítem 9 del inventario de depresión de Beck (BDI-IA). La desesperanza se midió con la escala de desesperanza de Beck (BHS). Los resultados obtenidos indicaron una relación significativa (p=.000) entre ideación suicida y desesperanza; una prevalencia de ideación suicida en los pacientes con cáncer entre 4.4% y 13.8% y de riesgo de suicidio entre 5.6% y 30.6%; y algún grado de desesperanza en 31.9 % de los participantes. De acuerdo con lo anterior, se confirma que existe relación entre la desesperanza y la ideación suicida en pacientes oncológicos adultos. Adicionalmente, que estas variables están presentes en los pacientes y que ameritan atención en la intervención interdisciplinaria.

Exposure to pesticides, ill health and averting behaviour : costs and determining the relationship

Farmers' exposure to pesticides is high in developing countries. As a result many farmers suffer from ill-health, both short and long term. Deaths are not uncommon. This paper addresses this issue. Field survey data from Sri Lanka are used to estimate farmers' expenditure on defensive behavior (DE) and to determine factors that influence DE. The avertive behavior approach is used to estimate costs. Tobit regression analysis is used to determine factors that influence DE. Field survey data show that farmers' expenditures on DE are low. This is inversely related to high incidence of ill health among farmers using pesticides.

Show me a bad kid and I’ll show you a lousy parent : making parents responsible for youth crime in Australian and Canadian Contexts

This article surveys literature bearing on the issue of parental liability and responsibility for the crimes of young offenders, with a particular focus on comparing different approaches to dealing with the issue in Australia and Canada. This comparative analysis of Australian and Canadian legislative and policy approaches is situated within a broader discussion of arguments about the “punitive turn” in youth justice, responsibilisation, and cross-jurisdictional criminal justice policy transfer and convergence. Our findings suggest that there are significant differences in the manner and extent to which Australia and Canada have invoked parental responsibility laws and policies as part of the solution to dealing with youth crime. We conclude by speculating on some of the reasons for these differences and establishing an agenda for additional needed cross-jurisdictional research. In particular, we argue that it would be fruitful to undertake a cross-jurisdictional study that examines the development and effects of parental responsibility laws across a larger number of different Western countries as well as across individual states and provinces within these national jurisdictions.

“Show me a bad kid and I’ll show you a lousy parent” : making parents responsible for youth crime in Australian and Canadian contexts

In this article we survey relevant international literature on the issue of parental liability and responsibility for the crimes of young offenders. In addition, as a starting point for needed cross-jurisdictional research, we focus on different approaches that have been taken to making parents responsible for youth crime in Australia and Canada. This comparative analysis of Australian and Canadian legislative and policy approaches is situated within a broader discussion of arguments about parental responsibility, the ‘punitive turn’ in youth justice, and cross-jurisdictional criminal justice policy transfer and convergence. One unexpected finding of our literature survey is the relatively sparse attention given to the issue of parental responsibility for youth crime in legal and criminological literature compared to the attention it receives in the media and popular-public culture. In Part I we examine the different views that have been articulated in the social science literature for and against parental responsibility laws, along with arguments that have been made about why such laws have been enacted in an increasing number of Western countries in recent years. In Part II, we situate our comparative study of Australian and Canadian legislative and policy approaches within a broader discussion of arguments about the ‘punitive turn’ in youth justice, responsibilisation, and cross-jurisdictional criminal justice policy transfer and convergence. In Part III, we identify and examine the scope of different parental responsibility laws that have been enacted in Australia and Canada; noting significant differences in the manner and extent to which parental responsibility laws and policies have been invoked as part of the solution to dealing with youth crime. In our concluding discussion, in Part IV, we try to speculate on some of the reasons for these differences and set an agenda for needed future research on the topic.

The oral health of critically ill children

Introduction. In adults, oral health has been shown to worsen during critical illness as well as influence systemic health. There is a paucity of paediatric critical care research in the area of oral health; hence the purpose of the Critically ill Children’s Oral Health (CCOH) study is to describe the status of oral health of critically ill children over time spent in the paediatric intensive care unit (PICU). The study will also examine the relationship between poor oral health and a variety of patient characteristics and PICU therapies and explore the relationship between dysfunctional oral health and PICU related Healthcare-Associated Infections (HAI). Method. An observational study was undertaken at a single tertiary-referral PICU. Oral health was measured using the Oral Assessment Scale (OAS) and culturing oropharyngeal flora. Information was also collected surrounding the use of supportive therapies, clinical characteristics of the children and the occurrence of PICU related HAI. Results. Forty-six participants were consecutively recruited to the CCOH study. Of the participants 63% (n=32) had oral dysfunction while 41% (n=19) demonstrated pathogenic oropharyngeal colonisation during their critical illness. The potential systemic pathogens isolated from the oropharynx and included Candida sp., Staphylococcus aureus, Haemophilus influenzae, Enterococcus sp. and Pseudomonas aeruginosa. The severity of critical illness had a significant positive relationship (p=0.046) with pathogenic and absent colonisation of the oropharynx. Sixty-three percent of PICU-related HAI involved the preceding or simultaneous colonisation of the oropharynx by the causative pathogen. Conclusion. Given the prevalence of poor oral health during childhood critical illness and the subsequent potential systemic consequences, evidence based oral hygiene practices should be developed and validated to guide clinicians when nursing critically ill children.