[Living wills under close scrutiny: Medical consultation is indispensable]. / Patientenverfügung auf dem Prüfstand: Ärztliche Beratung ist unerlässlich.

Since September 2009 the handling of living wills has been regulated by law. Even though a medical consultation is not imperative for the drawing up of a living will, first surveys have shown that medical information about clinical pictures and treatment options lead to an important specification of living wills. For the first time in Germany, a questionnaire has been developed to investigate the impact of medical consultations on the content of living wills. It revealed that nearly all the people surveyed who had already drawn up a living will wished to change the content of their completed will after attending the seminar because the previous version was no longer in accordance with their wishes. In the light of the frequent difficulties in hospitals concerning how to apply a living will to an actual clinical situation, we believe structured medical consultations to be indispensable.

Would they follow what has been laid down? Cancer patients' and healthy controls' views on adherence to advance directives compared to medical staff.

UNLABELLED: 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.

Attitudes towards and barriers to writing advance directives amongst cancer patients, healthy controls, and medical staff.

OBJECTIVES: After years of public discussion too little is still known about willingness to accept the idea of writing an advance directive among various groups of people in EU countries. We investigated knowledge about and willingness to accept such a directive in cancer patients, healthy controls, physicians, and nursing staff in Germany. METHODS: Cancer patients, healthy controls, nursing staff, and physicians (n = 100 in each group) were surveyed by means of a structured questionnaire. RESULTS: Only 18% and 19% of the patients and healthy controls respectively, and 10% of the medical staff had written an advance directive. However, 50-81% of those surveyed indicated that they wished to write one. This intention was associated with deteriorating health (p < 0.001). Only 29% of the healthy controls and 43% of the patients knew about the possibility of appointing a health care proxy. A majority in all groups believed that advance directives may influence the course of treatment (79-85%), yet half of those surveyed in all groups fear that patients could be pressurised into writing an advance directive, and 38-65% thought that relatives could abuse such documents. CONCLUSIONS: Only a minority of the participants had written an advance directive and knew about the possibility of authorizing a health care proxy. Deteriorating health was associated with increasing willingness to make a directive. Despite a majority belief that advance directives may influence treatment at the end of life, other factors limit their employment, such as fear of abuse.

What are cancer patients' preferences about treatment at the end of life, and who should start talking about it? A comparison with healthy people and medical staff.

GOALS OF THE WORK: In order to strengthen cancer patients' autonomy and to improve quality of palliative care, it is necessary to know what are the patients' preferences for treatment at the end of life, whether they accept the idea of advance directives, and who should initiate the process of fulfilling such a document. PATIENTS AND METHODS: We compared cancer patients' preferences with respect to particular treatment options at the end of life, acceptance of the idea of advance directives, and preferences for whom should initiate writing such a document with that of healthy controls, nursing staff, and physicians (n=100 each group) using a structured questionnaire. RESULTS: Cancer patients wanted treatment with antibiotics and infringing treatments such as chemotherapy and dialysis significantly more often than healthy controls, nursing staff, and physicians (p<0.01 and p<0.001, respectively). Determinants associated with the wish to opt for these treatments were reduced health condition and older age. The groups did not differ with respect to their acceptance of advance directives; 58-75% of all those surveyed wanted their physicians to initiate a discussion about writing such a document if they thought it appropriate. CONCLUSIONS: Cancer patients' preferences for treatment at the end of life significantly differ compared to other groups. Oncologists should initiate a discussion about an advance directive when/if the course of the illness seems to make this appropriate, which corresponds to the wish of the majority of cancer patients, healthy controls, and medical staff.

Frequency of the Amsterdam criteria in a regional German cohort of patients with colorectal cancer.

Estimates of the colon cancer burden associated with hereditary nonpolyposis colorectal cancer (HNPCC) vary from less than 1 % to more than 5 %. Amsterdam criteria fulfilled within a kindred (classic Amsterdam and Amsterdam II criteria) are widely used to identify patients prone to HNPCC. The present study was initiated to assess the frequency of the Amsterdam criteria within a regional German cohort of 207 patients with a history of colorectal cancer (CRC). Data on individual and family cancer histories were available in 154 patients (73 women, 81 men; mean age at diagnosis 62.4 +/- 13.3 years). A total of 843 first degree relatives have been identified within the kindreds of whom 121 had verified cancers. In 28 of 154 families (18 %), at least one first degree relative of the index patient had CRC. With respect to a typical family history, five kindreds (3.2 %) were likely to suffer from HNPCC on a clinical basis (4 kindreds met the classic Amsterdam criteria and one kindred the Amsterdam II criteria). Testing for microsatellite instability could additionally be performed in 4 of 5 patients who met the Amsterdam criteria and revealed DNA instability in 3 cases. Moreover, a missense mutation of MSH2 (Gly965Asp) was detected in one patient with microsatellite instability. Based on the classic Amsterdam and Amsterdam II criteria approximately 3 % of a regional German cohort of patients with CRC are likely to suffer from HNPCC. However, the final diagnosis of HNPCC can only be established by detection of pathogenic germline mutations within the DNA mismatch repair genes.

Palliative care versus euthanasia. The German position: the German General Medical Council's principles for medical care of the terminally ill.

In September 1998 the Bundesärztekammer, i.e., the German Medical Association, published new principles concerning terminal medical care. Even before publication, a draft of these principles was very controversial, and prompted intense public debate in the mass media. Despite some of the critics' suspicions that the principles prepared the way for liberalization of active euthanasia, euthanasia is unequivocally rejected in the principles. Physician-assisted suicide is considered to violate professional medical rules. In leaving aside some of the notions customarily used in the euthanasia debate, e.g., passive euthanasia, the principles emphasize the obligation of physicians to offer and the right of patients to receive palliative care. The principles explicitly list modalities of basic treatment that are indispensable in all cases, such as the obligation to satisfy hunger and thirst. This statement is meant to resolve the dispute on nutrition and hydration at the end of life, as it shifts the focus of care from maintaining physiological parameters to satisfying subjective needs. For patients in a persistent vegetative state, artificial feeding is held to be obligatory. Yet, the principles make reference to recent German jurisdiction which permit the stopping of artificial feeding if it is in accordance with the patient's presumed will. Additionally, the wording concerning this issue is found to remain unclear. Patients' autonomy is strengthened by explicitly welcoming advance directives as a means to ascertain patients' wills. The principles mark some changes compared to earlier documents. They deserve careful analysis and should be considered in the international debate on issues concerning the end of life.

[Intensive care of tumor patients]. / Intensivtherapie bei Tumorpatienten.

There is no substantial difference in the prognosis of cancer patients after intensive care compared to certain other groups of patients except for the tumor patient with major respiratory problems. Hence, the general refusal of intensive care for cancer patients is not justified. Rather indication for intensive care needs careful examination of several aspects including medical science and ethics. Particular ethical problems arising in intensive care for cancer patients can be reduced by open communication between the medical team and the patient as well as between the medical specialists.

[Recurrence of acute lymphoblastic leukemia after 12 years of complete remission]. / ALL-Rezidiv nach zwölf Jahren Vollremission.

The clinical course of a now twenty-year-old patient is reported. The boy was admitted to our children's hospital at the age of six with the diagnosis of acute lymphoblastic leukemia. He was treated according to the Memphis VII protocol established by Pinkel et al. Complete remission was obtained. After five years, therapy was finished. The boy was disease free in the following years. Growth and puberty development were normal. The boy was admitted again at the age of 18 5/12 years when bone marrow aspiration revealed lymphoblasts of the common-ALL type. After a treatment according to the national (BFM-)ALL therapy study a complete remission was obtained again. The patient is still under maintenance therapy. Clinical and laboratory data are reported. The frequency of second malignancies following cytostatic therapy is discussed.

131-Metaiodobenzylguanedine therapy of neuroblastoma in childhood. One year of therapeutic experience.

Eleven children with neuroblastoma refractory to conventional therapy or relapse of neuroblastoma were treated with 131-metaiodobenzylguanedine (MIBG). The therapeutic results and the side effects were evaluated. In one patient with disseminated bone marrow involvement complete remission was obtained. Partial remission was observed in six patients and stable disease in another. Three patients did not respond to MIBG, in two of them the tumours did not accumulate a sufficient MIBG dose. Clinical and laboratory examinations revealed an excellent tolerance of MIBG in all patients. First attempts to continue cytostasis after MIBG therapy were made. MIBG has a good therapeutic efficacy is sufficiently incorporated into the tumour cell.