Handling the desire to die- evaluation of an elective course for medical students.

BACKGROUND: The desire to die can occur in palliative care patients with a prevalence of up to 22%. Not every desire to die is accompanied by a pressure to act, but usually by a burden that can arise from various factors. To address this burden appropriately, health care workers should be trained. Based on an evaluated course on handling the desire to die, an elective course for medical students was developed and evaluated. In order to identify the impact of the elective course's content, a comparison of attitudes towards assisted dying with two other participant groups was conducted. Therefore, three questions from the evaluation of the elective course were used. METHOD: Online evaluation of the elective and questions addressing attitude were assessed using a five-point Likert scale. The specific outcome-based assessment was determined using the Comparative Self-Assessment Gain. The main participant group (group 1) were students who took the elective. The additional survey on attitudes towards assisted dying included undergraduate medical students who had taken compulsory palliative care courses (group 2) and physicians who had taken an introductory course in intensive care or emergency medicine (group 3). RESULTS: Group 1 (n = 13, response rate rr = 86.7%) was very satisfied with the blended learning format (100%) and the course itself (100%). They were able to deepen their knowledge (81.0%) and train skills (71.2%) through the course. In the additional surveys, there were 37 students in group 2 (rr = 66.1%) and 258 physicians in group 3 (rr = 73.6%). Willingness to assist with or accompany the various options for assisted dying varied according to the type of assistance. Among the participants, it can be summarised that the highest willingness was shown by the students of group 2 followed by the physicians of group 3 and the students of group 1. CONCLUSIONS: A course on handling the desire to die of palliative patients can deepen knowledge and train communication skills and thus support self-confidence. Dealing with the background of the desire to die, knowledge about assisted dying, but also one's own attitudes and responsibilities can influence the attitude towards assisted dying.

[Depression, anxiety, delirium and desire to die in palliative care : Recommendations of the S3 guideline on palliative care for patients with incurable cancer]. / Depression, Angst, Delir und Todeswunsch in der Palliativversorgung : Empfehlungen der S3-Leitlinie Palliativmedizin für Patienten mit einer nichtheilbaren Krebserkrankung.

BACKGROUND: The aim of palliative care is to optimize the quality of life of patients with incurable advanced diseases. Adequate psychotherapeutic and psychiatric care is essential in this context. OBJECTIVE: This article presents the recommendations of the S3 guideline on palliative care for patients with incurable cancer with regard to psychotherapeutic and psychiatric contents. MATERIAL AND METHODS: The guideline was developed under the leadership of the German Society for Palliative Medicine (DGP) within the methodological framework of the German Guideline Program in Oncology. Systematic literature reviews were carried out to identify relevant publications in the databases Medline, Cochrane Library, PsycInfo and Embase. Based on the publications included and clinical experience, representatives of 61 professional associations developed and agreed on evidence-based and consensus-based recommendations. RESULTS: Out of the total of 15 chapters in the guidelines, four have a special reference to psychiatry or psychotherapy; they cover the topics depression, anxiety, delirium in the dying phase and dealing with the desire to die. These chapters contain a total of 71 recommendations, almost one third of which are evidence-based. In view of the regularly undetected psychological symptoms in patients with incurable cancer, an early assessment is recommended. Optimal control of physical symptoms and support in social and existential matters are general measures that should be provided in addition to non-pharmacological and pharmacological procedures. CONCLUSION: The guideline on palliative care deals with important mental issues that should be considered by all disciplines and professions. The need for research in palliative care remains high.

[Network for Oncological Advisory Service (NOF) - a Pilot Project for (Long-Term) Follow-Up Care of Pediatric Cancer Patients]. / Netzwerk für onkologische Fachberatung (NOF) ­ Modellprojekt für (Langzeit-) Nachsorge nach einer Krebserkrankung im Kindes- und Jugendalter.

Background: In Germany some 2 000 children and adolescent are diagnosed with cancer every year. Curing rates are increasing and therewith also the number of survivors is growing. Survivors frequently suffer from long-term effects of the disease and its treatment, but long-term follow-up care shows deficits. Method: The Network for oncological advisory service (NOF) started in 11/2013, researching and building up a network of available support in Lower Saxony. A telephone hotline was installed in 01/2014 in order to advice survivors on their problems. At the same time, an interview study on survivors needs was conducted throughout Germany. Results: In the first 2 years, the NOF gave advice to 79 patients. Whilst enquiries of medical or psychological nature were transferred to the cooperation partner, requests on psychosocial and social legal issues are being deled by the NOF due to lack of appropriate partners. The evaluation of 25 interviews shows key issues in long-term after-care: (1) transition from acute therapy to everyday life, (2) problems due to pediatric cancer and therapy, (3) patients perception of own disposition, (4) social reactions towards survivors, (5) structure of long-term follow-up care, (6) information flow. Conclusion: Many survivors suffer from long-term effects of cancer and treatment. The lack of available contact person and being in limbo between cured and simultaneously affected by the cancer treatment and chronic diseases is perceived as being problematic. This translates to various requirements on a patient-oriented long-term care, mainly in the psychosocial field.

[Evaluation of Specialised Paediatric Palliative Home Care in Lower Saxony, Germany - A Qualitative Study on Parents' Perspectives]. / Evaluation der spezialisierten ambulanten pädiatrischen Palliativversorgung in Niedersachsen - Eine qualitative Studie zur Elternsicht.

BACKGROUND: In 2007 the children's right to specialised paediatric palliative home care became law in Germany. This claim should be met in Lower Saxony by the establishment of a comprehensive specialised paediatric home care (SPPHC). Since April 2010, a central office undertakes the coordination and administration throughout the federal state. Regional teams comprising nursing, medical and psychosocial specialists care for the children and adolescents suffering from complex conditions due to life-limiting conditions - subsidiary to regional health care providers. The aim of the study was to evaluate SPPHC in Lower Saxony. METHODOLOGY: From June 2012 to February 2013, semi-structured interviews were conducted with 20 parents of children aged from 3 to 18 years. The young patients fulfilled all criteria to be eligible for SPPHC. 13 of the families experienced SPPHC. 7 families did not utilise the specialised care, mostly because the palliative situation occurred before the implementation of specialised care. Data were analysed using content analysis (Mayring). Therefore, key aspects of paediatric palliative home care were summarised in main categories. The evaluation of parent's satisfaction with palliative home care was performed by an evaluation scheme developed for the main categories (very good - good - bad- very bad) and operated for every case. RESULTS: 6 dimensions of paediatric palliative home care were identified: (i) benefit of care, (ii) continuity of care, (iii) perception of care providers as a team, (iv) dealing with the issues death and dying/hospice and palliative, (v) care provider's communication/cooperation with parents, and (vi) parent's Information. As all parents clearly indicated a rating on the first 3 categories, these categories were selected for the evaluation of parent's satisfaction with the received home care. The evaluation revealed that parents experienced in SPPHC looked upon these 3 main categories more favourably than parents without the experience of SPPHC. As room for improvement, the respondents requested the extension of physician's presence and communication with the families as well as with each other, efforts to better meet the needs of psycho-social support of the families and to optimise follow up-care. CONCLUSION: The implementation of SAPPV was rated positively by the concerned families. In addition, options for improvement could be identified.

Patients' Adherence in the Maintenance Therapy of Children and Adolescents with Acute Lymphoblastic Leukemia.

BACKGROUND: Acute lymphoblastic leukemia (ALL) is the most common form of paediatric cancer. Maintenance therapy as last treatment phase includes oral chemotherapy with methotrexate (MTX) and mercaptopurine (6-MP), self- or parent-administered at home, given for about 1 ½ years, and qualified as decisive for an optimum therapy outcome. The aim of our study was to analyze factors influencing the adherence of patients with ALL undergoing maintenance therapy and their families. METHODS: A multi-method study was undertaken between 11/2011 and 10/2014 with patients surveyed by the Hannover Medical School outpatient clinic, including a questionnaire survey and qualitative interviews with parents as well as blood samples of the patients. RESULTS: 33 questionnaires, 27 interviews and blood samples of 26 patients could be analyzed. Only one third of the blood samples showed concentrations of the 6-MP active metabolite within the therapeutic reference range. Parents named the clinical doctor as their main advisor on medication intake. 36% (12/33) of the participants stated that medication intake has not always occurred the way medication was prescribed. Drug formulation and drug intake information could be identified as determinants of adherence. Parents' problems to obtain information are partly caused by different study results concerning the correct timing of the drug intake and drug interactions with milk products. CONCLUSION: Parents' information on drug therapy should be more consistent and the pharmaceutical formulations have to be adapted to patients' needs to improve adherence and thereby the chance of long-term remission.