End-of-life care in Germany: Study design, methods and first results of the EPACS study (Establishment of Hospice and Palliative Care Services in Germany)

BMC Palliative Care

Volumn 9, Issue , 2010, Pages

  Pinzón, Luis Carlos Escobar ^a   Münster, Eva ^a   Fischbeck, Sabine ^a   Unrath, Michael ^a   Claus, Matthias ^a   Martini, Tanja ^a   Weber, Martin ^a  

^a UNIVERSITY MEDICAL CENTER MAINZ   (Germany)

Author keywords

[No Author keywords available]

Indexed keywords

ADOLESCENT; ADULT; AGE DISTRIBUTION; AGED; ARTICLE; CHILD; COMMUNICATION SKILL; CROSS-SECTIONAL STUDY; DOCTOR PATIENT RELATION; EMOTION; FEMALE; GERMANY; HEALTH CARE QUALITY; HEALTH CARE UTILIZATION; HOME CARE; HOSPICE; HUMAN; INFANT; INTERVIEW; JOB PERFORMANCE; MAJOR CLINICAL STUDY; MALE; MARRIAGE; MEDICAL SPECIALIST; MORTALITY; NURSE; OUTPATIENT CARE; PALLIATIVE THERAPY; PATIENT SATISFACTION; PHYSICIAN; PREDICTION; PRESCHOOL CHILD; QUESTIONNAIRE; SCHOOL CHILD; SEX DIFFERENCE; TERMINAL CARE;

EID: 77955712004     PISSN: None     EISSN: 1472684X     Source Type: Journal    
DOI: 10.1186/1472-684X-9-16     Document Type: Article

References (36)

1. Palliative Care: the World Health Organization's global perspective. C Sepulveda A Marlin T Yoshida A Ullrich, J Pain Symptom Manage 2002 24 2 91 96 10.1016/S0885-3924(02)00440-2 12231124
2. Dying in Germany - consequences of societal changes for palliative care and the health care system. M Ewers D Schaeffer, Journal of Public Health 2007 15 457 465 10.1007/s10389-007-0099-z
3. Recommendation Rec (2003) 24 of the Committee of Ministers to member states on the organisation of palliative care. Conuncil of Europe, 2003
4. Zur palliativmedizinischen Versorgungssituation in Deutschland. T Schindler, Bundesgesundheitsblatt - Gesundheitsforschung - Gesundheitsschutz 2006 49 11 1077 1086 10.1007/s00103-006-0068-7 17072514
5. Ambulante und stationäre Organisationsstrukturen in der Palliativmedizin. T Schindler H Ewald, Der Onkologe 2005 11 4 376 383 10.1007/s00761-005-0853-1
6. Zwischenbericht der Enquete-Kommission Ethik und Recht der modernen Medizin. Verbesserung der Versorgung Schwerstkranker und Sterbender in Deutschland durch Palliativmedizin und Hospizarbeit vom 22.6.2005. http://dip21.bundestag.de/dip21/btd/15/058/1505858.pdf
7. "Good idea but not feasible" - the views of decision makers and stakeholders towards strategies for better palliative care in Germany: a representative survey. SL Lueckmann M Behmann S Bisson N Schneider, BMC Palliat Care 2009 8 10 (Jul 22) 19563627
8. ISDOC Study Group. Actual and preferred place of death of cancer patients.Results from the Italian survey of the dying of cancer (ISDOC). M Beccaro M Costantini P Giorgi Rossi G Miccinesi M Grimaldi P Bruzzi, J Epidemiol Community Health 2006 Mai 60 5 412 416 10.1136/jech.2005.043646
9. Place of care in advanced cancer: a qualitative systematic literature review of patient preferences. IJ Higginson GJ Sen-Gupta, J Palliat Med 2000 Fall 3 3 287 300 10.1089/jpm.2000.3.287
10. Is there no place like home? Caregivers recall reasons for and experience upon transfer from home hospice to inpatient facilities. WG Evans TM Cutson KE Steinhauser JA Tulsky, J Palliat Med 2006 Feb 9 1 100 110 10.1089/jpm.2006.9.100
11. Determinants of congruence between the preferred and actual place of death for terminally ill cancer patients. ST Tang R Mccorkle, J Palliat Care 2003 19 4 230 237 14959592
12. A Measure of the Quality of Dying and Death: Initial Validation Using After-Death Interviews with Family Members. JR Curtis DL Patrick RA Engelberg K Norris C Asp I Byock, Journal of Pain and Symptom Management 2002 24 1 17 31 10.1016/S0885-3924(02)00419-0 12183092
13. Quality of life of cancer patients receiving inpatient and home-based palliative care. L Peters K Sellick, J Adv Nurs 2006 Mar 53 5 524 533 10.1111/j.1365-2648.2006.03754.x
14. Validation of Toolkit After-Death Bereaved Family Member Interview. JM Teno B Clarridge V Casey S Edgman-Levitan J Fowler, J Pain Symptom Manage 2001 22 3 752 758 10.1016/S0885-3924(01)00331-1 11532588
15. Family caregiver satisfaction with care at the end of life: Report from the cultural variations study (CVAS). EJ Phipps LE Braitman, American Journal of Hospice & Palliative Medicine 2004 21 5 340 342
16. Does dying at home influence the good death of terminal cancer patients? CA Yao WY Hu YF Lai SY Cheng CY Chen TY Chiu, J Pain Symptom Manage 2007 34 5 497 504 10.1016/j.jpainsymman.2007.01.004 17629664
17. Dying of cancer. The place of death and family circumstances. JG Catalan-Fernandez O Pons-Sureda A Recober-Martinez A Avella-Mestre JM Carbonero-Malberti E Benito-Oliver I Garau-Llinas, Med Care 1991 29 9 841 852 10.1097/00005650-199109000-00005 1921535
18. Do specialist palliative care teams improve outcomes for cancer patients? A systematic literature review. J Hearn IJ Higginson, Palliat Med 1998 Sep 12 5 317 332 10.1191/026921698676226729
19. Was ist speziell an der spezialisierten Palliativversorgung? [What is special in specialised palliative care?]. L Radbruch R Voltz, Schmerz 2008 Feb 22 1 7 8 10.1007/s00482-008-0628-x
20. Richtlinie des Gemeinsamen Bundesausschusses zur Verordnung von spezialisierter ambulanter Palliativversorgung. German Federal Ministry of Health, Bundesanzeiger 2008 39 911
21. What are the problems in palliative care? Results from a representative survey. L Radbruch F Nauck C Ostgathe F Elsner C Bausewein M Fuchs G Lindena K Neuwöhner D Schulenberg, Support Care Cancer 2003 11 442 451 10.1007/s00520-003-0472-6 12774219
22. What Is Palliative Care in Germany? Results from a Representative Survey. L Radbruch F Nauck M Fuchs K Neuwöhner D Schulenberg G Lindena, Journal of Pain and Symptom Management 2002 23 6 470 482 10.1016/S0885-3924(02)00408-6
23. Measuring patient and relatives satisfaction with level or aggressiveness of care and involvement in care decisions in the context of life threatening illness. GH Guyatt A Mitchell W Molloy R Capretta J Horsman L Griffith, J Clin Epidemiol 1995 48 10 1215 1224 10.1016/0895-4356(95)00024-X 7561983
24. Time expenditure in patient-related care provided by specialist palliative care nurses in a community hospice service. M Weber L Grohmann, Palliat Med 2004 18 719 726 10.1191/0269216304pm943oa 15623169
25. Validation of the EORTC QLQ-SAT32 cancer inpatient satisfaction questionnaire by self- versus interview-assessment comparison. A Brédart V Mignot A Rousseau S Dolbeault N Beauloye V Adam C Elie I Léonard B Asselain, Patient Educ Couns 2004 54 2 207 212 10.1016/S0738-3991(03)00210-6 15288916
26. Improvement of psychometric properties of a scale measuring inpatient satisfaction with care: a better response rate and a reduction of the ceiling effect. L Moret JM Nguyen N Pillet B Falissard P Lombrail, BMC Health Serv Res 2007 3 7 197 10.1186/1472-6963-7-197
27. Patient awareness of prognosis, patient-family caregiver congruence on the preferred place of death, and caregiving burden of families contribute to the quality of life for terminally ill cancer patients in Taiwan. ST Tang TW Liu CM Tsai CH Wang GC Chang LN Liu, Psychooncology 2008 17 12 1202 1209 10.1002/pon.1343 18521969
28. Bereaved family members' evaluation of hospice care: what factors influence overall satisfaction with services? RL Rhodes SL Mitchell SC Miller SR Connor JM Teno, J Pain Symptom Manage 2008 35 4 365 371 10.1016/j.jpainsymman. 2007.12.004 18294811
29. Enhancing family physician capacity to deliver quality palliative home care: an end-of-life, shared-care model. D Marshall D Howell K Brazil M Howard A Taniguchi, Can Fam Physician 2008 54 12 1703 1703 e1707 19074714
30. Palliative care in public health: a formal and content-related analysis of European journals. N Schneider A Bramesfeld L Burruano, Journal Public Health 2007 15 87 91 10.1007/s10389-006-0085-x
31. Palliativmedizin unter Betrachtung des demographischen Wandels. Was kann sich die Gesellschaft leisten? N Schmacke, Medizinische Klinik 2007 102 7 582 585 10.1007/s00063-007-1072-x 17634877
32. Measuring and Improving the Quality of Dying and Death. DL Patrick JR Curtis RA Engelberg E Nielsen E McCown, Annals of Internal Medicine 2003 139 5 410 415 12965967
33. Quality of Dying and Death in Two Medical ICUs. Perceptions of Family and Physicians. CR Levy EW Ely K Payne RA Engelberg DL Patrick JR Curtis, Chest 2005 127 5 1775 1783 10.1378/chest.127.5.1775 15888858
34. Family Caregivers' Assessment of Symptoms in Patients with Advanced Cancer: Concordance with Patients and Factors Affecting Accuracy. CJ McPherson KG Wilson MM Lobchuk S Brajtman, Journal of Pain and Symptom Management 2008 35 1 70 82 10.1016/j.jpainsymman.2007.02.038 17981002
35. After-Death Interviews with Surrogates/Bereaved Family Members: Some Issues of Vadility. J Addington-Hall C McPherson, Journal of Pain and Symptom Management 2001 22 3 784 790 10.1016/S0885-3924(01)00330-X 11532591
36. Sterben, Sterbehilfe und Therapieverzicht aus Angehörigensicht - Ergebnisse einer Hinterbliebenenbefragung. B Van Oorschot S Schweitzer N Köhler K Leppert K Steinbach C Hausmann R Anselm, Psychotherapie, Psychosomatik, Medizinische Psychologie 2005 55 283 290 10.1055/s-2004-834633 15948048