Moral issues in day-to-day palliative medicine and their relevance for the education of European general practitioners.

BACKGROUND: Considerations of moral problems in palliative medicine often deal with extreme situations. This study identified moral issues arising in routine palliative medicine. Their relevance for the education of European general practitioners is assessed. METHODS: Consecutive consultations of cancer patients with incurable disease were recorded in three outpatient clinics and one general practice in Belgium. Moral issues were identified by qualitative analysis of verbal transcripts of 30 of these consultations using the grounded-theory approach. The relevance of these issues for medical education was assessed by interviewing one educator of general practitioners from each of the 15 European Union states. RESULTS: Three core categories of moral issues were identified: telling the truth, patient control versus medical dominance, and handling the patient's life-world. The practical relevance of these issues was recognized by the educators. The suggested educational methods to deal with these topics were all active learning processes in small-group settings but varied otherwise. CONCLUSIONS: The moral issues identified in day-to-day palliative medicine may complement the problems evoked in the literature dealing with more extreme situations. An effort to study the appropriate way for medical education to deal with these topics may be indicated.

Moral concerns of different types of patients in clinical BRCA1/2 gene mutation testing.

PURPOSE: Implementing predictive genetic testing for a severe and common chronic disease such as breast cancer may raise unique ethical problems. Here we report on moral concerns experienced by patients in the setting of genetic counseling based on BRCA1/2 gene testing. PATIENTS AND METHODS: Patients were members of breast or breast/ovarian cancer families in a consecutive series of 100 families who received counseling at a familial cancer clinic. The patients' moral concerns were identified using the grounded theory approach in the qualitative analysis of verbal transcripts of 45 counseling sessions. Included were sessions with patients who had breast and ovarian cancer, as well as their male and female relatives, before and after the specific BRCA1/2 gene mutation was identified in the family, and before and after those who opted for mutation analysis were informed of their carrier status. RESULTS: There is an association of BRCA1/2 gene mutation carrier status and specific topics of moral concern. The moral preoccupations of patients with breast and ovarian cancer (probable carriers) related to their being instrumental in the detection of the specific mutation segregating in the family. The preoccupations of possible carriers concerned their own offspring. Individuals who tested positive (proven carriers) were concerned with issues of confidentiality. Patients who tested negative (proven noncarriers) were concerned with helping siblings and other relatives. CONCLUSION: Knowledge of the moral concerns of subjects in the study sample may help health care providers be aware of the moral concerns of their own patients. This report may also contribute to the debate on predictive testing for familial adult-onset diseases from the patient's perspective.

High frequency of BRCA1/2 germline mutations in 42 Belgian families with a small number of symptomatic subjects.

AIM: The initial risk assessments for BRCA1/2 mutation carriers and estimates of carrier frequencies were based on extended pedigrees with a large number of symptomatic subjects. When counselling based on BRCA gene mutation analysis was initiated, we faced requests for counselling mostly from members of small families with only two or three affected members. We report on the likelihood of finding a BRCA mutation in such small families. METHODS: In the first 100 families that came for oncogenetic counselling since September 1994, a BRCA1/2 gene mutation screen was initiated if there were two or more symptomatic first degree relatives, if one of them had ovarian cancer, or if one breast cancer was diagnosed before the age of 50 years. RESULTS: BRCA gene mutations were found and confirmed by sequencing in 14 out of 42 families (33%); 10 mutations were in the BRCA1 gene and four in the BRCA2 gene. Our findings indicate an increased probability of detecting a BRCA gene mutation when ovarian cancer occurred in the family. There is no increased probability of detecting a mutation with increasing numbers of breast cancers. Only 22% of the eligible presymptomatic family members opted for testing. The presymptomatic female carriers currently prefer breast surveillance rather than prophylactic surgery. CONCLUSION: BRCA1/2 gene mutation testing can be done with reasonable efficiency in the Belgian population when there are two symptomatic family members. The availability of testing does not lead to a high frequency of requests for testing by presymptomatic family members.