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Medicine, Health Care and Philosophy

, Volume 8, Issue 3, pp 297–305 | Cite as

Would They Follow What has been Laid Down? Cancer Patients' and Healthy Controls' Views on Adherence to Advance Directives Compared to Medical Staff

  • S. SahmEmail author
  • R. Will
  • G. Hommel
Scientific Contribution

Abstract

Advance directives are propagated as instruments to maintain patients’ autonomy in case they can no longer decide for themselves. It has been never been examined whether patients’ and healthy persons themselves are inclined to adhere to these documents. Patients’ and healthy persons’ views on whether instructions laid down in advance directives should be followed because that is (or is not) “the right thing to do”, not because one is legally obliged to do so, were studied and compared with that of medical staff. Method: Vignette study presenting five cases. Cancer patients, healthy persons, nursing staff and physicians (n = 100 in each group) were interviewed. An adherence score was calculated (maximum value 5). The adherence score is found to be low in all groups, yet lowest in patients (1.55; standard deviation 1.13) and healthy controls (1.60; 1.37). The scores are significantly different between nursing staff on the one hand and patients and healthy controls on the other (p < 0.005 and p < 0.05, respectively), and between doctors and patients (p < 0.05). Interviewees who want these documents to be followed tend to live alone and to have already written an advance directive. Conclusions: Cancer patients and healthy persons widely disregard instructions laid down in advance directives and consider them less binding than physicians and nursing staff do. Only a minority tends to adhere more to advance directives. To improve decision-making at the end of life when patients are no longer able to decide for themselves alternative concepts, such as advanced care planning, should be considered.

Keywords

advance directives adherence cancer patients decision-making end of life ethics healthy persons medical staff vignette study 

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References

  1. Chan, H.M. 2004‘Sharing Death and Dying: Advance Directives, Autonomy and the Family’Bioethics1887103CrossRefPubMedGoogle Scholar
  2. Council of Ethical and Judicial Affairs of the American Medical Association1989‘Current opinions of the Council of Ethical and Judicial Affairs of the American Medical AssociationAmerican Medical AssociationChicagoopinions 2. 20, 2.21.Google Scholar
  3. Downie, R.S., Calman, K.C. 1994Healthy respectOxford University PressOxford51Google Scholar
  4. Dyer, C. 2004a‘Living Wills will have to Specify Treatments that Patient is Refusing’British Medical Journal3281035Google Scholar
  5. Dyer, C. 2004b‘Bill Clarifies Gap in Law Over Living Wills’British Medical Journal3281516Google Scholar
  6. Emanuel, L.L., Barry, M.J., Stoeckle, J.D., Ettelson, L.M., Emanuel, E.J. 1991‘Advance Directives for Medical Care-a case for Greater use’New England Journal of Medicine324889895PubMedCrossRefGoogle Scholar
  7. Fagerlin, A. and C.E. Schneider: 2004, ‘Enough. The Failure of the Living Will’, Hastings Center Report 30–42.Google Scholar
  8. German Medical Council2004‘Principles for Medical Care of the Terminally Ill’Deutsches Aerzteblatt101A1298A1299Google Scholar
  9. Ikonomidis, S., Singer, P.A. 1999‘Autonomy, Liberalism and Advance Care Planning’Journal Medical Ethics25522527Google Scholar
  10. Luttrell, S., Sommerville, A. 1996‘Limiting Risks by Curtailing Rights: A Response to Dr Ryan’Journal of Medical Ethics22100104PubMedGoogle Scholar
  11. Lynn, J., Goldstein, N.E. 2003‘Advance Care Planning for Fatal Chronic Illness: Avoiding Commonplace Errors and Unwarranted Suffering’Annals of Internal Medicine138812818PubMedGoogle Scholar
  12. Oorschot, B., Hausmann, C., Köhler, N., Leppert, K., Schweitzer, S., Steinbach, K., Anselm, R. 2004‘Perspectives of Patients on Advanced Directives Results of a Survey of Palliative Umour Patients’Ethik in der Medizin6112122Google Scholar
  13. Perry, S.J. 2002‘Legal Implications for Failure to Comply with Advance Directives: An Examination of the Incompetent Individual’s Right to Refuse Life-sustaining Medical Treatment’Behavioural Sciences and Law20253269Google Scholar
  14. Reilly, B.M., Magnussen, C.R., Ross, J., Ash, J., Papa, L., Wagner, M. 1994‘Can We Talk? Inpatient Discussions About Advance Directives in a Community Hospital Attending Physicians Attitudes, their Inpatients Wishes, and Reported Experience’Archives of Internal Medicine15422992308CrossRefPubMedGoogle Scholar
  15. Robertson, J.A. 1991‘Second Thoughts on Living Wills’Hastings Cenert Report2169Google Scholar
  16. Ryan, C.J. 1996‘Betting your Life: An Argument Against Certain Advance Directives’Journal Medical Ethics229599Google Scholar
  17. Sahm, S.W. 2000‘Palliative Care Versus Euthanasia. The German Position: The German General Medical Council’s Principles for Medical Care of the Terminally Ill’Journal of Medicine and Philosophy25195219PubMedCrossRefGoogle Scholar
  18. Sahm, S., R. Will and G. Hommel: in press. ‘Attitudes Towards and Barriers to Write Advance Directives Amongst Tumour Patients, Healthy Controls and Medical Staff’, Journal Medical Ethics, in press.Google Scholar
  19. Savulescu, J. 1994‘Rational Desires and the Limitation of Life Sustaining Treatment’Bioethics8191222PubMedGoogle Scholar
  20. Sehgal, A., Galbraith, A., Chesney, M., Schoenfeld, P., Charles, G., Lo, B. 1992‘How Strictly do Dialysis Patients Want their Advance Directives Followed?’Journal of the American Medical Association2675963CrossRefPubMedGoogle Scholar
  21. Slevin, M.L., Stubbs, L., Plant, H.J., Wilson, P., Gregory, W.M., Armes, P.J., Downer, S.M. 1990‘Attitudes to Chemotherapy: Comparing Views of Patients with Cancer with those of Doctors, Nurses, and General Public’British Medical Journal30014581460PubMedCrossRefGoogle Scholar
  22. Task force of the German Federal Ministry of Justice on patients’ autonomy at the end of life.: 2004, Final Report. online: www.bmj.bund.de, last seen 29th of July 2004.Google Scholar
  23. Teno, J.M., Licks, S., Lynn, J., Wenger, N., Connors, A.F.,Jr, Phillips, R.S., O’Connor, M.A., Murphy, D.P., Fulkerson, W.J., Desbiens, N., Knaus, W.A. 1997‘Do Advance Directives Provide Instructions that Direct Care? SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment’Journal of the American Geriatric Society45508512Google Scholar
  24. Teno, J., Lynn, J., Wenger, N., Phillips, R.S., Murphy, D.P., Connors, A.F.,Jr., Desbiens, N., Fulkerson, W., Bellamy, P., Knaus, W.A. 1997‘Advance Directives for Seriously Ill Hospitalized Patients: Effectiveness With the Patient Self-Determination Act and the SUPPORT Intervention. SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment’Journal of the American Geriatric Society45500507Google Scholar
  25. Thompson, T., Barbour, R., Schwartz, L. 2003‘Adherence to Advance Directives in Critical care Decision Making: Vignette Study’British Medical Journal3271011PubMedGoogle Scholar
  26. Tonelli, M.R. 1996‘Pulling the Plug on Living Wills. A Critical Analysis of Advance Directives’Chest110816822PubMedGoogle Scholar

Copyright information

© Springer 2005

Authors and Affiliations

  1. 1.Department of Gastroenterology/OncologyGerman Clinic of Diagnosis (Deutsche Klinik für Diagnostik)WiesbadenGermany
  2. 2.Institute for Ethics and History of MedicineJohann Wolfgang Goethe-UniversityFrankfurtGermany
  3. 3.Institute of Medical Biometry, Epidemiology and Informatics (IMBEI)Johannes-Gutenberg-UniversityMainzGermany

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