Originally published as JCO Early Release 10.1200/JCO.2008.17.9515 on March 23 2009

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Patient Involvement in Decisions to Limit Treatment: The Crucial Role of Agreement Between Physician and Patient

From the Department of Internal Medicine III, University Hospital Grosshadern; Ludwig-Maximilians University, Munich; Landshut Medical Center, Landshut, Germany; and the Department of Medical and Health Ethics, Medical Faculty, University of Basel, Switzerland.

Corresponding author: Eva Winkler, MD, Department of Internal Medicine III, University Hospital Grosshadern, Ludwig-Maximilians University, 81377 Munich, Germany; e-mail: eva.winkler{at}med.uni-muenchen.de.

Purpose The aim of this study was to describe, first, the decision-making process concerning the limitation of life-prolonging treatment (DLT); second, the extent to which patients are actually involved in these decisions; and third, to detect medical and ethical factors that affect patient involvement.

Patients and Methods This prospective qualitative study enrolled 76 patients with incurable cancer with whom the limitation of life-prolonging treatment was discussed. Embedded researchers on the wards recorded the patient's history, medical condition, type of treatment limitation discussed, patient wishes, decision-making capacity, and patient involvement using an in-depth documentation procedure.

Results While the majority of patients were informed about their diagnosis, therapy, and course of disease (99%, 97%, 90%, respectively), only 47% were involved in DLT. Two thirds of the patients preferred palliative care, and one third wished to extend their lifetime. If patients preferred palliative care, they were more often in line with physicians' treatment goals than patients who were striving for longer survival (91.4% v 46.7%; P = .001). They also were involved significantly more often in DLT. Multivariate analysis showed that age, Karnofsky performance index or decision-making capacity had no impact on patient involvement.

Conclusion Only half of the patients were involved in DLT. Surprisingly, the main predictor of patient involvement was not their medical condition, but agreement with physicians' palliative treatment goals. These results show that if physicians switch to comfort care in terminally ill patients and patients are not yet prepared to follow this line, treatment limitations are often decided without involving the patient.

Supported by the German Research Foundation grants HI 701/6-1, HI 701/6-2, RE 701/4-1, RE 701/4-2, and RE 701/4-3.

Presented in part at the 113th Meeting of the German Society for Internal Medicine, April 14-18, 2007, Wiesbaden, Germany.

Authors' disclosures of potential conflicts of interest and author contributions are found at the end of this article.

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