The desire to hasten death: Using Grounded Theory for a better understanding "When perception of time tends to be a slippery slope".

BACKGROUND: Some patients with advanced and progressive diseases express a desire to hasten death. AIM: This study evaluated the motivations of patients expressing such a desire in a country with prohibitive legislation on euthanasia and physician-assisted suicide. DESIGN: A modified form of Grounded Theory was used. SETTING/PARTICIPANTS: Patients from the departments of palliative medicine in three hospitals in Germany were recruited when they had made a statement or request to hasten death. Participants were interviewed face to face. Recruitment was stopped with 12 participants because of data saturation. RESULTS: Thematic analysis revealed three main motivational themes: self-determination, agony, and time. Expectations toward health professionals, attitudes toward death, and secureness related to the end of life were additional main themes emerging from the analysis. CONCLUSIONS: The desire to hasten death may be used as an extreme coping strategy to maintain control against anticipated agony. Patients expected health professionals to listen to and respect their experiences. Emerging hypotheses included the following: (a) patients try to balance life time and anticipated agony, and the perception of time is distressing in this balancing act; (b) anticipated images of agony and suffering in the dying process occur frequently and are experienced by patients as intrusive; (c) patients expressing a desire to hasten death are in need of more information about the dying process; and (d) patients wanted their caregivers to listen to and respect their wish to hasten death, and they did not expect the caregivers to understand this as an order to actually hasten their death.

Psychosocial and spiritual problems of terminally ill patients in Kerala, India.

AIM: To investigate psychosocial and spiritual problems of terminally ill patients in Kerala, India. MATERIALS & METHODS: Semi-structured qualitative interviews of terminally ill patients were carried out at the Trivandrum Institute of Palliative Sciences Palliative Care Clinic in Trivandrum, Kerala, India and in patients' homes in the surrounding area. RESULTS: Interviews with 37 terminally ill patients in Kerala showed several problems regarding their emotional state, faith, knowledge about the disease, family life and the major impact of financial issues. CONCLUSION: This study shows that more effort should be focused on the reduction of the problems terminally ill patients have to face. While many of these problems are a result of financial troubles and could be eliminated if sufficient funds were available, others are a consequence of tradition and culture. Solutions for the improvement of patients' situations in accord with tradition and culture have to be found.

Antibiotics in palliative medicine--results from a prospective epidemiological investigation from the HOPE survey.

BACKGROUND: Patients with advanced cancer are highly susceptible to infections. The decision whether to treat an active or suspected infection or to withhold or withdraw an antibiotic treatment in end-of-life care may be difficult. In order to quantify the antimicrobial prescribing practices and decision-making processes in palliative care units in Germany, a survey was performed as part of the Hospice and Palliative Evaluation in 2006. METHOD: With a specifically designed questionnaire, 448 patients for whom an active or suspected infection and antibiotic treatment was discussed were documented. Data on the use of and indication for antibiotic treatment and the decision-making on withdrawal or withholding of antibiotic therapy were collected. RESULTS: 286 (63.8%) received an antibiotic therapy. In 88 cases, withdrawal of an ongoing treatment was documented. The most frequent reasons for withdrawal were: deterioration of general status (41.4%), inefficiency of therapy (25.7%), and explicit wish of patient (14.3%; multiple answers possible). Outcome of antimicrobial therapy was rated poor or very poor for a fifth of the cases and accordingly, antibiotics were more likely to be withdrawn if the clinical success was considered to be poor. The initiation of therapy was often decided by physicians solely, whereas withdrawing and withholding therapy demanded more often involvement of other team members in the decision-making process. CONCLUSION: The initiation of therapy seems to be easier than withdrawing and withholding, as involvement of other team members in the decision-making process was then sought more often. When antibiotics were given until death, the indication should be reconsidered because of a possibly undesirable prolongation of the dying process. Clinical practice may benefit from clear definitions of treatment goals and outcome criteria to better evaluate the necessity for and success of antimicrobial treatment.

Outcome indicators in palliative care--how to assess quality and success. Focus group and nominal group technique in Germany.

PURPOSE: The call for clinically relevant outcome criteria has been raised, as assessment of adequate quality of service providers is essential with increasing momentum in the development of palliative care in most European countries. The aim of this study is to investigate important dimensions and indicators for assessment and evaluation of palliative care from the perspective of multi-disciplinary German experts working over years in the field of palliative care. METHODS: A focus group, using the structured consensus method of the improved nominal group technique (INGT), with nine experts from different disciplines was conducted in Germany. RESULTS: An abundance of topics (16) were identified, pointing at the complexity of the issue. Main topics were: quality of life, needs assessments of patients and relatives, resource assessment, surveillance of decision-making processes, as well as spiritual well-being. The following properties were claimed as essential for outcome criteria sensitivity, without additional burden on patients, easy applicability, scientific validity, and helpful for communication within the team, ethical discussions as well as for quality management. CONCLUSIONS: The study identified topics considered important by experts in clinical practise. The discussions exposed the diversity of demands on outcome assessment put up by different stakeholder groups. This and the high number of relevant items show the complexity for the agreement on a unique set of outcome criteria. Further research considering other perspectives is needed.

Barriers and needs in paediatric palliative home care in Germany: a qualitative interview study with professional experts.

BACKGROUND: In North-Rhine Westphalia (Germany) a pilot project for an extensive service provision of palliative care for children and adolescents has been implemented. Accompanying research was undertaken with the aim to assess the status quo of service delivery at the outset of the project and to evaluate the effects of the pilot project. As part of the research, barriers and needs with respect to paediatric palliative home care in the target region were explored. METHODS: Semi-structured interviews with 24 experts in the field of paediatrics, palliative and hospice care have been conducted and were analysed by qualitative content analysis. RESULTS: Four main categories emerged from the interviews: (1) specific challenges and demands in palliative care for children and adolescents, (2) lack of clear legal and financial regulations, (3) gaps in the existing care delivery, and (4) access to services. Generally the interviews reflected the observation that the whole field is currently expanding and that certain deficits are temporary barriers that will be resolvable in the medium-term perspective. CONCLUSIONS: Predominant barriers were seen in the lack of clear legal and financial regulations which take into account the specific challenges of palliative care in children and adolescents, as well as in a shortcoming of specialist services for a local based care provision throughout the federal country.

The neurofunctional mechanisms of traumatic and non-traumatic memory in patients with acute PTSD following accident trauma.

Neurofunctional alterations in acute posttraumatic stress disorder (PTSD) and changes thereof during the course of the disease are not well investigated. We used functional magnetic resonance imaging to assess the functional neuroanatomy of emotional memory in surgical patients with acute PTSD. Traumatic (relative to non-traumatic) memories increased neural activity in the amygdala, hippocampus, lateral temporal, retrosplenial, and anterior cingulate cortices. These regions are all implicated in memory and emotion. A comparison of findings with data on chronic PTSD suggests that brain circuits affected by the acute disorder are extended and unstable while chronic disease is characterized by circumscribed and stable neurofunctional abnormalities.

The use of Grounded theory in palliative care: methodological challenges and strategies.

BACKGROUND: The need for research methods that are suited to evaluate important issues and phenomena in palliative care has established different qualitative research approaches during the last years. This article describes the use and adaptation of a qualitative research methodology in a palliative care setting. RESEARCH PROCESS: The wish for hastened death of terminally ill patients is an important end-of-life issue. Proponents of palliative care have argued that good palliative care would prevent the wish for hastened death. However, this wish is stated by a few patients receiving palliative care, raising a challenging dilemma for patients, relatives and caregivers involved. In order to investigate the motivations of the patients asking for hastened death, we conducted a qualitative study using Grounded theory (GT). This article aims to illustrate the use of a flexible, less burdening qualitative research method and the adaptation of the research process of GT in a palliative care research setting. This is based on experiences and illustrated by examples from the qualitative study on the wish for hastened death in patients receiving palliative care. CONCLUSIONS: GT allowed a systematic understanding of patients' experiences and attitudes and careful in-depth exploration of this vulnerable population. Conducting a GT study needs high staff resources, a great catchment area for participant recruitment and realistic inclusion and exclusion criteria to allow for theoretical sampling. The use of GT should be facilitated by an experienced researcher familiar with this method because of high methodological requirements and rather complex analysis procedures.

Neural processing of traumatic events in subjects suffering PTSD - a case study of two surgical patients with severe accident trauma.

Neuroimaging research on the neurobiology of chronic PTSD (posttraumatic stress disorder) has revealed structural and functional alterations primarily affecting areas of the medial temporal lobe (hippocampus, amygdala, and parahippocampal gyrus) and the frontal cortex known to be associated with the disorder. Using functional magnetic resonance imaging (fMRI), the present study studied the functional neuroanatomy of traumatic and non-traumatic emotional memory in two surgical patients who had sustained severe accident trauma. While patient 1 had developed acute PTSD following the traumatic event, patient 2 (control) did not. When confronted with traumatic (relative to negatively valenced non-traumatic) memory, the PTSD patient exhibited evidence for increased neural activity in the right and the left superior temporal lobe, the amygdala, the left angular gyrus, and the medial frontal gyrus, while the non-PTSD patient exposed to identical conditions showed increased activations in frontal and parietal regions. Both patients exhibited identical activation patterns when recalling non-traumatic memories relative to neutral memories. It is concluded that the pronounced activation patterns in the PTSD patient may be considered specific for acute PTSD, involved with the emotional arousal and the vivid visual recollections typical for the acute phase of the disorder.