Doctors and their patients : A context for understanding the wish to hasten death

There is a paucity of research that has directly examined the role of the health professional in dealing with a terminally ill patient's wish to hasten death (WTHD) and the implications of this for the support and services needed in the care for a dying patient. Themes to emerge from a qualitative analysis of interviews conducted on doctors (n=24) involved in the treatment and care of terminally ill patients were (i) the doctors' experiences in caring for their patients (including themes of emotional demands/expectations, the duration of illness, and the availability of palliative care services); (ii) the doctors' perception of the care provided to their respective patients (comprising themes concerning satisfaction with the care for physical symptoms, for emotional symptoms, or overall care); (iii) the doctors' attitudes to euthanasia and (iv) the doctors' perception of their patients' views/beliefs regarding euthanasia and hastened death. When responses were categorised according to the patients' level of a WTHD, the theme concerning the prolonged nature of the patients' illnesses was prominent in the doctor group who had patients with the highest WTHD, whereas there was only a minority of responses concerning support from palliative care services and satisfaction with the level of emotional care in this group. This exploratory study presents a set of descriptive findings identifying themes among a small group of doctors who have been involved in the care of terminally ill cancer patients, to investigate factors that may be associated with the WTHD among these patients. The pattern of findings suggest that research investigating the doctor-patient interaction in this setting may add to our understanding of the problems (for patients and their doctors) that underpins the wish to hasten death in the terminally ill.

A Qualitative Evaluation of the Provision of Bereavement Care Accessed by Service Users Living in a Health and Social Care Trust Area in Northern Ireland

Within the health and social care sector in the United Kingdom, the
management of death and bereavement has become increasingly
challenging. This service evaluation sought to explore the bereavement
care offered to individuals living in one Health and Social Care
Trust catchment area of Northern Ireland. Qualitative interviews
were conducted with key government and voluntary agency staff.
The findings indicated that much of the bereavement provision is
based on the interest and initiative of individual staff members, with
few processes to assess the level of bereavement care needed and those
best skilled to provide it. Recommendations are made for a bereavement
care strategy that outlines a bereavement needs assessment process,
identifying the scope of interventions and protocols for practice.

Bereavement outcomes: a quantitative survey identifying risk factors in family carers bereaved through cancer.

Background: Enabling patients to die in their preferred place is important but achieving preferred place of death may increase the informal carer’s risk into bereavement. Aim: to determine risk factors of family carers bereaved through cancer in Northern Ireland. Design: These results form part of a larger QUALYCARE-NI study which used postal questionnaires to capture quantitative data on carer’s bereavement scores using the Texas Revised Inventory of Grief. Setting/participants: Participants were individuals who: registered the death of a person between 1st December 2011 and 31st May 2012; where cancer (defined by ICD10 codes C00-D48) was the primary cause; where the deceased was over 18 years of age and death occurred at home, hospice, nursing home or hospital in Northern Ireland. Participants were approached in confidence by the Demography and Methodology Branch of the Northern Ireland Statistics and Research Agency. Those wishing to decline participation were invited to return the reply slip. Non-responders received a second questionnaire six weeks after initial invitation. Results indicated that risk factors positively influencing bereavement outcomes included patients having no preference for place of death and carers remaining in employment pre or post bereavement. In contrast, patients dying in hospital, carers stopping work, being of lower socio-economic status and close kinship to the deceased negatively impacted on bereavement scores. Family carers should be adequately supported to continue in employment; priority should be given to assessing the financial needs of families from lower socio-economic areas; and bereavement support should focus on close relatives of the deceased.

Guidelines for the use and interpretation of assays for monitoring cell death in higher eukaryotes

Cell death is essential for a plethora of physiological processes, and its deregulation characterizes numerous human diseases. Thus, the in-depth investigation of cell death and its mechanisms constitutes a formidable challenge for fundamental and applied biomedical research, and has tremendous implications for the development of novel therapeutic strategies. It is, therefore, of utmost importance to standardize the experimental procedures that identify dying and dead cells in cell cultures and/or in tissues, from model organisms and/or humans, in healthy and/or pathological scenarios. Thus far, dozens of methods have been proposed to quantify cell death-related parameters. However, no guidelines exist regarding their use and interpretation, and nobody has thoroughly annotated the experimental settings for which each of these techniques is most appropriate. Here, we provide a nonexhaustive comparison of methods to detect cell death with apoptotic or nonapoptotic morphologies, their advantages and pitfalls. These guidelines are intended for investigators who study cell death, as well as for reviewers who need to constructively critique scientific reports that deal with cellular demise. Given the difficulties in determining the exact number of cells that have passed the point-of-no-return of the signaling cascades leading to cell death, we emphasize the importance of performing multiple, methodologically unrelated assays to quantify dying and dead cells.

Doctors and their patients: A context for understanding the wish to hasten death

There is a paucity of research that has directly examined the role of the health professional in dealing with a terminally ill patient's wish to hasten death (WTHD) and the implications of this for the support and services needed in the care for a dying patient. Themes to emerge from a qualitative analysis of interviews conducted on doctors (n = 24) involved in the treatment and care of terminally ill patients were (i) the doctors' experiences in caring for their patients (including themes of emotional demands/expectations, the duration of illness, and the availability of palliative care services); (ii) the doctors' perception of the care provided to their respective patients (comprising themes concerning satisfaction with the care for physical symptoms, for emotional symptoms, or overall care); (iii) the doctors' attitudes to euthanasia and (iv) the doctors' perception of their patients' views/beliefs 'regarding euthanasia and hastened death. When responses were categorised according to the patients' level of a WTHD, the theme concerning the prolonged nature of the patients' illnesses was prominent in the doctor group who had patients with the highest WTHD, whereas there was only a minority of responses concerning support from palliative care services and satisfaction with the level of emotional care in this group. This exploratory study presents a set of descriptive findings identifying themes among a small group of doctors who have been involved in the care of terminally ill cancer patients, to investigate factors that may be associated with the WTHD among these patients. The pattern of findings suggest that research investigating the doctor-patient interaction in this setting may add to our understanding of the problems (for patients and their doctors) that underpins the wish to hasten death in the terminally ill. Copyright (C) 2003 John Wiley Sons, Ltd.

Education as a Predictor of Antidepressant and Anxiolytic medication use after Bereavement: a population based record linkage study.

Purpose: Educational attainment has been shown to be positively associated with mental health and a potential buffer to stressful events. One stressful life event likely to affect everyone in their lifetime is bereavement. This paper assesses the effect of educational attainment on mental health post bereavement.
Methods: By utilising large administrative datasets, linking Census returns to death records and prescribed medication data, we analysed the bereavement exposure of 208,332 individuals aged 25-74 years. Two-level multi-level logistic regression models were constructed to determine the likelihood of antidepressant medication use (a proxy of mental ill-health) post bereavement given level of educational attainment.
Results: Individuals who are bereaved have greater antidepressant use than those who are not bereaved, with over a quarter (26.5%) of those bereaved by suicide in receipt of antidepressant medication compared to just 12.4% of those not bereaved. Within individuals bereaved by a sudden death those with a University Degree or higher qualifications are 73% less likely to be in receipt of antidepressant medication compared to those with no qualifications, after full adjustment for demographic, socio-economic and area factors (OR=0.27, 95% CI 0.09,0.75). Higher educational attainment and no qualifications have an equivalent effect for those bereaved by suicide.
Conclusions: Education may protect against poor mental health, as measured by the use of antidepressant medication, post bereavement, except in those bereaved by suicide. This is likely due to the improved cognitive, personal and psychological skills gained from time spent in education.

Positive experiences for participants in suicide bereavement groups : a grounded theory model of elements that contribute to the process of adjusting to the loss

Grounded Theory was used to examine the experiences of 13 participants who had attended psycho-educational support groups for those bereaved by suicide. Results demonstrated core and central categories which fit well with group therapeutic factors developed by Yalom (1995) and emphasised the importance of universality, imparting information and instilling hope, catharsis and self-disclosure, and broader meaning making processes surrounding acceptance or adjustment. Participants were commonly engaged in a lengthy process of oscillating between loss oriented and restoration focused reappraisals. The functional experience of the group comprised feeling normal within the group, providing a sense of permission to feel and to express emotions and thoughts and to bestow meaning. Structural variables of information and guidance and different perspectives on the suicide and bereavement were gained from other participants, the facilitators, group content and process. Personal changes, including in relationships and in their sense of self, assisted participants to develop an altered and more positive personal narrative.

Architecture post mortem : the diastolic architecture of decline, dystopia, and death

Architecture Post Mortem surveys architecture’s encounter with death, decline, and ruination following late capitalism. As the world moves closer to an economic abyss that many perceive to be the death of capital, contraction and crisis are no longer mere phases of normal market fluctuations, but rather the irruption of the unconscious of ideology itself. Post mortem is that historical moment wherein architecture’s symbolic contract with capital is put on stage, naked to all. Architecture is not irrelevant to fiscal and political contagion as is commonly believed; it is the victim and penetrating analytical agent of the current crisis. As the very apparatus for modernity’s guilt and unfulfilled drives-modernity’s debt-architecture is that ideological element that functions as a master signifier of its own destruction, ordering all other signifiers and modes of signification beneath it. It is under these conditions that architecture theory has retreated to an “Alamo” of history, a final desert outpost where history has been asked to transcend itself. For architecture’s hoped-for utopia always involves an apocalypse. This timely collection of essays reformulates architecture’s relation to modernity via the operational death-drive: architecture is but a passage between life and death. This collection includes essays by Kazi K. Ashraf, David Bertolini, Simone Brott, Peggy Deamer, Didem Ekici, Paul Emmons, Donald Kunze, Todd McGowan, Gevork Hartoonian, Nadir Lahiji, Erika Naginski, and Dennis Maher. Contents: Introduction: ‘the way things are’, Donald Kunze; Driven into the public: the psychic constitution of space, Todd McGowan; Dead or alive in Joburg, Simone Brott; Building in-between the two deaths: a post mortem manifesto, Nadir Lahiji; Kant, Sade, ethics and architecture, David Bertolini; Post mortem: building deconstruction, Kazi K. Ashraf; The slow-fast architecture of love in the ruins, Donald Kunze; Progress: re-building the ruins of architecture, Gevork Hartoonian; Adrian Stokes: surface suicide, Peggy Deamer; A window to the soul: depth in the early modern section drawing, Paul Emmons; Preliminary thoughts on Piranesi and Vico, Erika Naginski; architectural asceticism and austerity, Didem Ekici; 900 miles to Paradise, and other afterlives of architecture, Dennis Maher; Index.

Dying in hospital: medical failure or natural outcomes?

The purpose of this study was to describe patterns of medical and nursing practice in the care of patients dying of oncological and hematological malignancies in the acute care setting in Australia. A tool validated in a similar American study was used to study the medical records of 100 consecutive patients who died of oncological or hematological malignancies before August 1999 at The Canberra Hospital in the Australian Capital Territory. The three major indicators of patterns of end-of-life care were documentation of Do Not Resuscitate (DNR) orders, evidence that the patient was considered dying, and the presence of a palliative care intention. Findings were that 88 patients were documented DNR, 63 patients' records suggested that the patient was dying, and 74 patients had evidence of a palliative care plan. Forty-six patients were documented DNR 2 days or less prior to death and, of these, 12 were documented the day of death. Similar patterns emerged for days between considered dying and death, and between palliative care goals and death. Sixty patients had active treatment in progress at the time of death. The late implementation of end-of-life management plans and the lack of consistency within these plans suggested that patients were subjected to medical interventions and investigations up to the time of death. Implications for palliative care teams include the need to educate health care staff and to plan and implement policy regarding the management of dying patients in the acute care setting. Although the health care system in Australia has cultural differences when compared to the American context, this research suggests that the treatment imperative to prolong life is similar to that found in American-based studies.

End-of-life care in the critical care setting : nurses' practices and factors affecting these practices

Background: Critical care units are designed and resourced to save lives, yet the provision of end-of-life care is a significant component of nursing work in these settings. Limited research has investigated the actual practices of critical care nurses in the provision of end-of-life care, or the factors influencing these practices. To improve the care that patients at the end of life and their families receive, and to support nurses in the provision of this care, further research is needed. The purpose of this study was to identify critical care nurses' end-of-life care practices, the factors influencing the provision of end-of-life care and the factors associated with specific end-of-life care practices. Methods: A three-phase exploratory sequential mixed-methods design was utilised. Phase one used a qualitative approach involving interviews with a convenience sample of five intensive care nurses to identify their end-of-life care experiences and practices. In phase two, an online survey instrument was developed, based on a review of the literature and the findings of phase one. The survey instrument was reviewed by six content experts and pilot tested with a convenience sample of 28 critical care nurses (response rate 45%) enrolled in a postgraduate critical care nursing subject. The refined survey instrument was used in phase three of this study to conduct a national survey of critical care nurses. Descriptive analyses, exploratory factor analysis and univariate general linear modelling was undertaken on completed survey responses from 392 critical care nurses (response rate 25%). Results: Six end-of-life care practice areas were identified in this study: information sharing, environmental modification, emotional support, patient and family-centred decision making, symptom management and spiritual support. The items most frequently identified as always undertaken by critical care nurses in the provision of end-of-life care were from the information sharing and environmental modification practice areas. Items least frequently identified as always undertaken included items from the emotional support practice area. Eight factors influencing the provision of end-of-life care were identified: palliative values, patient and family preferences, knowledge, preparedness, organisational culture, resources, care planning, and emotional support for nurses. Strong agreement was noted with items reflecting values consistent with a palliative approach and inclusion of patient and family preferences. Variation was noted in agreement for items regarding opportunities for knowledge acquisition in the workplace and formal education, yet most respondents agreed that they felt adequately prepared. A context of nurse-led practice was identified, with variation in access to resources noted. Collegial support networks were identified as a source of emotional support for critical care nurses. Critical care nurses reporting values consistent with a palliative approach and/or those who scored higher on support for patient and family preferences were more likely to be engaged in end-of-life care practice areas identified in this study. Nurses who reported higher levels of preparedness and access to opportunities for knowledge acquisition were more likely to report engaging in interpersonal practices that supported patient and family centred decision making and emotional support of patients and their families. A negative relationship was identified between the explanatory variables of emotional support for nurses and death anxiety, and the patient and family centred decision making practice area. Contextual factors had a limited influence as explanatory variables of specific end-of-life care practice areas. Gender was identified as a significant explanatory variable in the emotional and spiritual support practice areas, with male gender associated with lower summated scores on these practice scales. Conclusions: Critical care nurses engage in practices to share control with and support inclusion of families experiencing death and dying. The most frequently identified end-of-life care practices were those that are easily implemented, practical strategies aimed at supporting the patient at the end of life and the patient's family. These practices arguably require less emotional engagement by the nurse. Critical care nurses' responses reflected values consistent with a palliative approach and a strong commitment to the inclusion of families in end-of-life care, and these factors were associated with engagement in all end-of-life care practice areas. Perceived preparedness or confidence with the provision of end-of-life care was associated with engagement in interpersonal caring practices. Critical care nurses autonomously engage in the provision of end-of-life care within the constraints of an environment designed for curative care and rely on their colleagues for emotional support. Critical care nurses must be adequately prepared and supported to provide comprehensive care in all areas of end-of-life care practice. The findings of this study raise important implications, and informed recommendations for practice, education and further research.

When death is not a crime : challenges for police and policing

The over-representation of vulnerable populations within the criminal justice system, and the role of police in perpetuating this, has long been a topic of discussion in criminology. What is less discussed is the way in which non -criminal investigations by police, in areas like a death investigation, may perpetuate similar types of engagement with vulnerable populations. In Australia, as elsewhere, it is the police who are responsible for investigating both suspicious and violent deaths like homicide as well as non - suspicious, violent deaths like accidents and suicides. Police are also the agents tasked with investigating deaths which are neither violent nor suspicious but occur outside hospitals and other care facilities. This paper reports on how the police describe - or are described by others - their role in a non - suspicious death investigation, and the challenges that such investigations raise for police and policing.

Investigating death: the emotional and cultural challenges for police

The over-representation of vulnerable populations within the criminal justice system, and the role of police in perpetuating this, has long been a topic of discussion in criminology. What is less discussed is the way in which non-criminal investigations by police, in areas like a death investigation, may similarly disadvantage and discriminate against vulnerable populations. In Australia, as elsewhere, it is police who are responsible for investigating both suspicious and violent deaths like homicide as well as non-suspicious, violent deaths like accidents and suicides. Police are also the agents tasked with investigating deaths which are neither violent nor suspicious but occur outside hospitals and other care facilities. This paper, part of a larger funded Australian research project focusing on the ways in which cultural and religious differences are dealt with during the death investigation process, reports on how police describe – or are described by others – during their role in a non-suspicious death investigation, and the challenges that such investigations raise for police and policing. The employment of police liaison officers is discussed as one response to the difficulty of policing cultural and religious difference with variable results.

Strain- and host species-specific inflammasome activation, IL-1β release, and cell death in macrophages infected with uropathogenic Escherichia coli

Uropathogenic Escherichia coli (UPEC) is the main etiological agent of urinary tract infections (UTIs). Little is known about interactions between UPEC and the inflammasome, a key innate immune pathway. Here we show that UPEC strains CFT073 and UTI89 trigger inflammasome activation and lytic cell death in human macrophages. Several other UPEC strains, including two multidrug-resistant ST131 isolates, did not kill macrophages. In mouse macrophages, UTI89 triggered cell death only at a high multiplicity of infection, and CFT073-mediated inflammasome responses were completely NLRP3-dependent. Surprisingly, CFT073- and UTI89-mediated responses only partially depended on NLRP3 in human macrophages. In these cells, NLRP3 was required for interleukin-1β (IL-1β) maturation, but contributed only marginally to cell death. Similarly, caspase-1 inhibition did not block cell death in human macrophages. In keeping with such differences, the pore-forming toxin α-hemolysin mediated a substantial proportion of CFT073-triggered IL-1β secretion in mouse but not human macrophages. There was also a more substantial α-hemolysin-independent cell death response in human vs. mouse macrophages. Thus, in mouse macrophages, CFT073-triggered inflammasome responses are completely NLRP3-dependent, and largely α-hemolysin-dependent. In contrast, UPEC activates an NLRP3-independent cell death pathway and an α-hemolysin-independent IL-1β secretion pathway in human macrophages. This has important implications for understanding UTI in humans.

Caregivers of people with neurodegenerative diseases: profile and unmet needs from a population-based survey in South Australia.

INTRODUCTION: Neurodegenerative diseases (NDD) are characterized by progressive decline and loss of function, requiring considerable third-party care. NDD carers report low quality of life and high caregiver burden. Despite this, little information is available about the unmet needs of NDD caregivers. METHODS: Data from a cross-sectional, whole of population study conducted in South Australia were analyzed to determine the profile and unmet care needs of people who identify as having provided care for a person who died an expected death from NDDs including motor neurone disease and multiple sclerosis. Bivariate analyses using chi(2) were complemented with a regression analysis. RESULTS: Two hundred and thirty respondents had a person close to them die from an NDD in the 5 years before responding. NDD caregivers were more likely to have provided care for more than 2 years and were more able to move on after the death than caregivers of people with other disorders such as cancer. The NDD caregivers accessed palliative care services at the same rate as other caregivers at the end of life, however people with an NDD were almost twice as likely to die in the community (odds ratio [OR] 1.97; 95% confidence interval [CI] 1.30 to 3.01) controlling for relevant caregiver factors. NDD caregivers reported significantly more unmet needs in emotional, spiritual, and bereavement support. CONCLUSION: This study is the first step in better understanding across the whole population the consequences of an expected death from an NDD. Assessments need to occur while in the role of caregiver and in the subsequent bereavement phase.

Experiences and needs of bereaved carers during palliative and end-of-life care for people with chronic obstructive pulmonary disease

This study explored the experiences of palliative care that bereaved carers had while providing care to a dying loved one with chronic obstructive pulmonary disease (COPD).

Method: Semi-structured interviews were undertaken with nine carers whohad lost a loved one in the preceding 6 to 24 months.These interviews explored levels of satisfaction with disease management, symptom management, and end-of-life care. With permission, interviews were tape recorded, transcribed, and subjected to content analysis.

Findings: Three themes emerged from the data: the impact of the caring experience, the lack of support services, and end-of-life and bereavement support. Carers experienced carer burden, lack of access to support services, a need for palliative care, and bereavement support.

Conclusion: The findings provide a first insight into the experiences of carers of patients with advanced COPD. Bereaved carers of patients who had suffered advanced COPD reported that they had received inadequate support and had a range of unmet palliative care needs. Special attention should be paid to educating and supporting carers during their caring and bereavement periods to ensure that their quality of life is maintained or enhanced