Life Care (life + care)

Distribution by Scientific Domains

Selected Abstracts

The Birmingham International Workshop on Supportive, Palliative, and End-of-Life Care Research

CANCER, Issue 4 2006
Neil A. Hagen MD
The authors outline the context, discussions, and recommendations of the International Symposium on Supportive, Palliative, and End of Life Care, which was held October 5 and 6, 2005 in Birmingham, England. The potential benefits and challenges of international collaborative research activities are highlighted in supportive, palliative, and end-of-life care within the broader health care research community. [source]

EFNS task force on management of amyotrophic lateral sclerosis: guidelines for diagnosing and clinical care of patients and relatives

An evidence-based review with good practice points
Despite being one of the most devastating diseases known, there is little evidence for diagnosing and managing patients with amyotrophic lateral sclerosis (ALS). Although specific therapy is lacking, correct early diagnosis and introduction of symptomatic and specific therapy can have a profound influence on the care and quality of life of the patient and may increase survival time. This document addresses the optimal clinical approach to ALS. The final literature search was performed in the spring of 2005. Consensus recommendations are given graded according to the EFNS guidance regulations. Where there was lack of evidence but consensus was clear we have stated our opinion as good practice points. People affected with possible ALS should be examined as soon as possible by an experienced neurologist. Early diagnosis should be pursued and a number of investigations should be performed with high priority. The patient should be informed of the diagnosis by a consultant with a good knowledge of the patient and the disease. Following diagnosis, the patient and relatives should receive regular support from a multidisciplinary care team. Medication with riluzole should be initiated as early as possible. PEG is associated with improved nutrition and should be inserted early. The operation is hazardous in patients with vital capacity <50%. Non-invasive positive pressure ventilation improves survival and quality of life but is underused. Maintaining the patients ability to communicate is essential. During the entire course of the disease, every effort should be made to maintain patient autonomy. Advance directives for palliative end of life care are important and should be fully discussed early with the patient and relatives respecting the patients social and cultural background. [source]

Coping With Uncertainties in Advance Care Planning

Stephen C. Hines
This essay extends problematic integration theory and related theories of uncertainty management to communication about serious illness and death. These extensions (a) note that theorizing must focus on multiple, interrelated uncertainties rather than a single such uncertainty; (b) explain how communication with others often problematizes efforts to cope with illness-related uncertainties; and (c) identify specific factors that may influence how persons choose to cope with these uncertainties. The essay describes implications for ongoing efforts to improve communication with persons nearing death. Specifically, they point to 5 incorrect assumptions that limit the effectiveness of current efforts to encourage persons to talk about their end-of-life preferences with others in a process referred to as advance care planning and then suggest concrete changes derived from this framework that can improve the advance care planning process and enhance the quality of end-of- life care. [source]

What is the meaning of palliative care in the Asia-Pacific region?

Margaret O'CONNOR
Abstract This paper describes the preliminary work required to understand cultural differences in palliative care in the United Kingdom and three countries in the Asia-Pacific region, in preparation for a cross-country study. The study is intended to address cultural understandings of palliative care, the role of the family in end of life care, what constitutes good care and the ethical issues in each country. Suggestions are then made to shape the scope of the study and to be considered as outcomes to improve care of the dying in these countries. It is anticipated that the method used to achieve consensus on cross-country palliative care issues will be both qualitative and quantitative. Identifying key priorities in the delivery and quality measures of palliative care will involve participants in focus groups, a Delphi survey and in the development of clinical indicators towards creating standards of palliative care common to the Asian Pacific region. [source]

Genetics professionals' experiences with grief and loss: implications for support and training

G Geller
Geller G, Rushton CH, Francomano C, Kolodner K, Bernhardt BA. Genetics professionals' experiences with grief and loss: implications for support and training. This study was designed to determine the degree to which clinical genetics professionals are comfortable with grief and loss, whether discomfort with grief and loss is associated with clinician distress, and what factors predict comfort with grief and loss for the purpose of developing recommendations for support and training. We surveyed 300 clinical geneticists (MDs), genetic counselors (GCs) and genetic nurses randomly selected from their professional associations. Out of 225 eligible clinicians, 172 completed surveys (76% response rate). The vast majority of respondents have clinical interactions with patients and families who are experiencing grief, loss and/or death. However, nearly 20% of respondents reported that they did not feel ,comfortable in the presence of grief and loss'. Twenty-nine percent of respondents disagree or strongly disagree that they ,have been adequately trained to address issues of death, dying, grief/bereavement, and end of life care'. Reported discomfort with grief and loss was strongly correlated with clinician distress. Predictors of comfort with grief and loss included perceived adequacy of training, tolerance for uncertainty, significant personal experiences of loss and deriving meaning from patient care. In conclusion, as follows. A significant minority of clinical genetics professionals experience discomfort in the presence of grief and loss, and feel inadequately prepared for such experiences. Greater attention should be paid to training clinicians in how to deal with grief and loss, and supporting them through such difficult experiences in an effort to reduce their distress. [source]