Skip to main content

Advertisement

SpringerLink
Log in

What are the problems in palliative care? Results from a representative survey

  • Original Article
  • Published:
Supportive Care in Cancer Aims and scope Submit manuscript

Abstract

The development of a standardised core documentation for palliative care was initiated in Germany in 1996. Results from previous evaluations have shown the wide variability of the documentation in participating units. A different documentation form was used in 2001 using free text entries to find out what problems palliative care specialists perceive in their patients. Fifty-five of the 83 palliative inpatient units in Germany (66% of the units) as well as one unit each from Austria and Switzerland, documented 1,304 patients in the core documentation in 2001. Inpatient care was continued until death for 531 patients, 604 patients were discharged home and 169 patients were transferred to other places of care. Palliative care treatment effectively reduced mean physical symptom intensity. Mean intensities of psychological and social problems also were reduced although not as much as physical symptom load. Nursing problems were reduced for those patients discharged but not for those who died in the unit. Anxiety and depression were the most frequent psychological problems. Nursing problems were focussed on impairment of mobility and other activities of daily living such as washing, nutrition and drinking. Excessive distress on caregivers and the organisation of home care were the predominant social problems. In conclusion, this representative prospective survey with the majority of palliative care units in Germany showed the high effectiveness of symptom relief. Using the categories identified in this study, checklists were constructed and included in the documentation forms that are currently used for the core documentation project.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Fig. 1a–b.

Similar content being viewed by others

References

  1. Aaronson NK, Ahmedzai S, Bergmann B, Bullinger M, Cull A, Duez NJ, Filiberti A, Flechtner H, Fleishman SB, de Haes JC, Kaasa S, Klee M, Osoba D, Razavi D, Rofe PB, Schraub S, Sneeuw K, Sullivan M, Takeda F (1993) The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. J Natl Cancer Inst 85:365–376

    PubMed  Google Scholar 

  2. Bruera E, Kuehn N, Miller MJ, Selmser P, Macmillan K (1991) The Edmonton Symptom Assessment System (ESAS): a simple method for the assessment of palliative care patients. J Palliat Care 7:6–9

    CAS  PubMed  Google Scholar 

  3. Chang VT, Hwang SS, Feuerman M (2000) Validation of the Edmonton Symptom Assessment Scale. Cancer 88:2164–2171

    Article  CAS  PubMed  Google Scholar 

  4. Determann MM, Rzehak P, Küchler T, Dzeyk W, Fuchs M, Kemna G, Neuwöhner K, Passon M, Radbruch L, Lindena G, Finnern J (2000) Qualitätssicherung in der Palliativmedizin. Forum Deutsche Krebsgesellschaft 15:10–13

    Google Scholar 

  5. Grond S, Zech D, Diefenbach C, Bischoff A (1994) Prevalence and pattern of symptoms in patients with cancer pain: a prospective evaluation of 1635 cancer patients referred to a pain clinic. J Pain Symptom Manage 9:372–382

    CAS  PubMed  Google Scholar 

  6. Hearn J, Higginson IJ (1999) Development and validation of a core outcome measure for palliative care: the palliative care outcome scale. Palliative Care Core Audit Project Advisory Group. Qual Health Care 8:219–227

    CAS  PubMed  Google Scholar 

  7. Kaasa S, Loge JH (2002) Quality-of-life assessment in palliative care. Lancet Oncol 3:175–182

    Article  PubMed  Google Scholar 

  8. McCorkle R, Young K (1978) Development of a symptom distress scale. Cancer Nursing 1:373–378

    CAS  PubMed  Google Scholar 

  9. Mitchell G (1998) Assessment of GP management of symptoms of dying patients in an Australian community hospice by chart audit. Fam Pract 15:420–425

    Article  CAS  PubMed  Google Scholar 

  10. Morize V, Nguyen DT, Lorente C, Desfosses G (1999) Descriptive epidemiological survey on a given day in all palliative care patients hospitalized in a French university hospital. Palliat Med 13:105–117

    CAS  PubMed  Google Scholar 

  11. Nauck F, Radbruch L, Ostgathe C, Fuchs M, Neuwöhner K, Schulenberg D, Lindena G (2002) Kerndokumentation für Palliativstationen—Strukturqualität und Ergebnisqualität. Z Palliativmed 3:41–49

    Article  Google Scholar 

  12. Osoba D (2000) Health-related quality-of-life assessment in clinical trials of supportive care in oncology. Support Care Cancer 8:84–88

    Article  CAS  PubMed  Google Scholar 

  13. Philip J, Smith WB, Craft P, Lickiss N (1998) Concurrent validity of the modified Edmonton Symptom Assessment System with the Rotterdam Symptom Checklist and the Brief Pain Inventory. Support Care Cancer 6:539–541

    Article  CAS  PubMed  Google Scholar 

  14. Portenoy RK, Thaler HT, Kornblith AB, Lepore JM, Friedlander-Klar H, Coyle N, Smart-Curley T, Kemeny N, Norton L, Hoskins W, al e (1994) Symptom prevalence, characteristics and distress in a cancer population. Qual Life Res 3:183–189

    CAS  PubMed  Google Scholar 

  15. Portenoy RK, Thaler HT, Kornblith AB, Lepore JM, Friedlander-Klar H, Kiyasu E, Sobel K, Coyle N, Kemeny N, Norton L, et al (1994) The Memorial Symptom Assessment Scale: an instrument for the evaluation of symptom prevalence, characteristics and distress. Eur J Cancer 30A:1326–1336

    CAS  PubMed  Google Scholar 

  16. Radbruch L, Nauck F, Fuchs M, Neuwohner K, Schulenberg D, Lindena G (2002) What is palliative care in Germany? Results from a representative survey. J Pain Symptom Manage 23:471–483

    Article  PubMed  Google Scholar 

  17. Radbruch L, Sabatowski R, Loick G, Jonen-Thielemann I, Elsner F, Hörmann E (2000) MIDOS—Validierung eines minimalen Dokumentationssystems für die Palliativmedizin. Schmerz 14:231–239

    Article  Google Scholar 

  18. Sabatowski R, Radbruch L, Loick G, Nauck F, Müller M (1999) Palliativ 2000—Stationäre und ambulanten Palliativ- und Hospizeinrichtungen in Deutschland. Mundipharma GmbH, Limburg

  19. Stiefel F, Die Trill M, Berney A, Nunez Olarte JM, Razavi D (2001) Depression in palliative care: a pragmatic report from the Expert Working Group of the European Association for Palliative Care. Support Care Cancer 9:477–488

    Article  CAS  PubMed  Google Scholar 

  20. Stromgren AS, Groenvold M, Pedersen L, Olsen AK, Spile M, Sjogren P (2001) Does the medical record cover the symptoms experienced by cancer patients receiving palliative care? A comparison of the record and patient self-rating. J Pain Symptom Manage 21:189–196

    Article  CAS  PubMed  Google Scholar 

  21. Stromgren AS, Groenvold M, Sorensen A, Andersen L (2001) Symptom recognition in advanced cancer. A comparison of nursing records against patient self-rating. Acta Anaesthesiol Scand 45:1080–1085

    Article  CAS  PubMed  Google Scholar 

  22. Stromgren AS, Groenvold M, Petersen L, Olsen A, Sjogren P (2002) Symptomatology of cancer patients in palliative care: content validation of self-assessment questionnaires against medical records. Eur J Cancer 38:788–794

    PubMed  Google Scholar 

Download references

Acknowledgements

Part of the preparatory work and the data evaluation as well as the development of an electronic data base for the core instrument was supported by a financial grant from the Mundipharma Company, Limburg, Germany. The chair for palliative medicine of the University Hospital of Aachen (Lukas Radbruch) is funded by the Grünenthal Foundation for Palliative Care. We would like to thank the physicians, nurses, social workers, psychologists and other staff members who spent much time and enthusiasm with the data documentation. Additional thanks are directed to the principal investigators of the participating centres who participated in the development of the core instrument, and to the German Association of Palliative Medicine and the German Cancer Association for their continuous support of the core documentation project.

Author information

Authors and Affiliations

  1. Department of Palliative Medicine, University Hospital, Pauwelsstr. 30, , 52074, Aachen, Germany

    Lukas Radbruch

  2. Department of Anaesthesiology and Palliative Care, Malteser Hospital, von Hompesch Str. 1, 53123, Bonn, Germany

    Friedemann Nauck & Christoph Ostgathe

  3. Pain Clinic, Department of Anaesthesiology, University of Cologne, 50924 , Köln, Germany

    Frank Elsner

  4. Interdisciplinary Department of Palliative Care, University of Munich, Marchionistr. 15, 81377 , München, Germany

    Claudia Bausewein

  5. Palliative Care Unit, Department of Internal Medicine, St. Elisabeth Hospital, Friedrich Ebert Str. 59, 56564, Neuwied, Germany

    Martin Fuchs

  6. Clinical Analysis, Research and Application, Clara Zetkin Str. 34, 14532, Kleinmachnow, Germany

    Gabriele Lindena

  7. Palliative Care Unit, Dr. Hancken Hospital, Harsefelder Str. 8, 21680, Stade, Germany

    Karl Neuwöhner

  8. German Cancer Society, Hanauer Landstr. 194, 60314, Gemany

    Dieter Schulenberg

Authors
  1. Lukas Radbruch
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Friedemann Nauck
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Christoph Ostgathe
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Frank Elsner
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Claudia Bausewein
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Martin Fuchs
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. Gabriele Lindena
    View author publications

    You can also search for this author in PubMed Google Scholar

  8. Karl Neuwöhner
    View author publications

    You can also search for this author in PubMed Google Scholar

  9. Dieter Schulenberg
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Lukas Radbruch.

Additional information

This study was conducted in conjunction with the Working Group on the Core Documentation for Palliative Care Units in Germany. L. Radbruch and F. Nauck contributed equally to the manuscript.

Rights and permissions

Reprints and permissions

About this article

Cite this article

Radbruch, L., Nauck, F., Ostgathe, C. et al. What are the problems in palliative care? Results from a representative survey. Support Care Cancer 11, 442–451 (2003). https://doi.org/10.1007/s00520-003-0472-6

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s00520-003-0472-6

Keywords

Search

Navigation