| The purpose of this project is twofold: firstly, to increase insight into ethical problems associated with (recent advances in) palliative chemotherapy in metastastic breast and colorectal cancer, both in the context of individual patient care and in guideline setting. Secondly, to develop a normative framework intended to support decision making in both these contexts. In this proposal, 'ethical' and 'normative' are used interchangeably and denote considerations that involve basic values, such as ideas about a good life, about virtue, and about good patient care. Especially, the value of a limited prolonging of life needs to be balanced with possible deterioration of the quality of life due to side-effects and the complexity of treatment regimes. Whereas in individual treatment financial considerations will usually play no significant role, this is likely to pose specifically hard problems in guideline setting. The overall purpose leads to the following questions: 1. What is the basis of value judgements of physicians and patients (and their next of kin), in individual patient care for metastatic breast or colorectal cancer, when choosing to start or not to start palliative chemotherapy, and to continue, discontinue, or modify treatment? 2. Which role do normative considerations play in setting guidelines for chemotherapy in these patients? 3. What is a theoretically justifiable and practically useful normative framework that may support decision making in this area? What can this study be expected to add to the existing literature? Firstly, a detailed description of the way patients and physicians deal with making decisions about palliative chemotherapy, of their opinions about the value conflict between limited benefit, considerable side-effects, and high costs, and of their opinions concerning the extent to which patients want to or have to share in medical decision making. Secondly, an exploration of the relationship between palliative chemotherapy and palliative care: Antagonists? Complementary strategies? PLAN OF INVESTIGATION: The project will use qualitative research methods, since these are most appropriate to study complex processes of decision making, in which ideas that the different actors involved hold about the good life with advanced cancer, need to be balanced with practical considerations and often lacunary medical evidence. The investigation will be conducted in conformity with established standards for qualitative research as they have been operationalised in the AmCOGG guidelines. About 150 semi-structured interviews using a topic list will be held with patients and families, their treating oncologists, their family physicians, and oncologists sitting on guideline committees. Patients will be selected, using purposive sampling techniques, in the Academic Medical Centre. To establish the topic lists, a literature study and a limited number of observations and pilot interviews will be performed. Interviews will be audiotaped and transcribed used appropriate software (Kwalitan). The complete material will then be coded and analysed using the normative framework published by Randall and Downie as a starting point; this framework will subsequently be adapted and modified using a procedure known in ethics as the method of reflective equilibrium. We expect notions from the ethic of care to be needed to complete the framework. POSSIBLE RESULTS / RELEVANCE FOR CANCER RESEARCH: The expected result will be four publications in international peer-reviewed journals and a thesis. More specifically, a normative framework to guide decisions concerning the start, (dis)continuation and modification of palliative chemotherapy will be the end product of this project. |
