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PubMed2002

Unexpected findings in identifiable stored blood samples after analysis without consent: moral arguments for and against disclosure.

Obtaining informed consent for using blood samples in research is mandatory. However, sometimes no consent is obtained for analysis of identifiable blood samples in a second study. As a result, a moral dilemma raises in case a possibly pathogenic mutation is found. Should the involved person be informed that such a mutation has been detected? We present a case in which this problem occurred and discuss arguments for and against information disclosure.

Adult↗
PubMed2005

Ignorance is bliss? Ethical considerations in therapeutic nondisclosure.

It is not uncommon for oncologists and other clinicians to encounter families who wish that grave medical information be withheld from their loved ones. Despite families' typically benevolent motives in making these requests, often, nondisclosure is not in the patients' best interests. Furthermore, nondisclosure may challenge physicians' professional obligations to their patients. However, there are particular situations in which nondisclosure is ethically appropriate, if not ethically obligatory. This article discusses potential benefits and harms associated with therapeutic nondisclosure in adult patients and offers strategies to effect more appropriate disclosure when therapeutic nondisclosure is contemplated.

Access to Information↗
PubMed1993

Information for cancer patients entering a clinical trial--an evaluation of an information strategy.

Informing patients before the start of antineoplastic treatment is important due to the anxiety and uncertainty felt by the patients and the legal aspects of trials. 34 women were interviewed 3 months after receiving information. Results show that the information was well remembered, patients were glad to bring a relative, two consultations with time for deliberation were well-received and that patients viewed written information as an important reinforcement. Overall, information provided was positively evaluated. Detailed information allowed patients to understand and participate in treatment decisions, thereby reducing their pretherapy anxiety. These results support expansion of the structured information programme to include all patients about to begin long-term cancer therapy.

Adult↗
PubMed1988

Ethical aspects of genetic disease and genetic counselling.

With the reduction in diseases due to nutritional deficiencies and infection, disorders which are wholly or partly genetic are becoming relatively more important in all branches of modern medicine. Genetic counselling has developed in recent years from just explaining to an individual or a couple the risk of them producing a handicapped child, to the possibility in many cases of better diagnosis and active intervention to reduce the risks. At the same time antenatal screening programmes have been introduced to detect women who may be carrying a fetus with a severe handicapping anomaly. The ethical aspects of these advances are considered in this article. A practical approach to the resolution of any dilemmas is proposed which concentrates on the duties incumbent on doctors and other health care workers involved with patients who have or may carry genetic disorders.

Disclosure↗
PubMed1981

On the death of a baby.

Andrew was a desperately premature baby weighing under two pounds. He died after months of "heroic' efforts in an intensive care facility. The story of his short cruel institutionalised life is a case study in the limits and excesses of modern medicine. The night he told us our son Andrew was about to die the doctor who had taken charge of him six months before also told us we were "intellectually tight' that we had "no feelings only thoughts and words and strategies'. We were "bad parents'. As the parents of a five-year-old daughter we knew the love a mother and father feels for children. Yet as Andrew's parents we were used to condemnation and insult. Andrew was a baby born 15 weeks prematurely weighing only 1lb 12oz and in a state of painful deterioration almost from the start. We wanted him to be allowed to die a natural death. Andrew's story is the story of what can happen when a baby becomes hopelessly entrapped in an intensive care unit where the machinery is more sophisticated than the code of law and ethics governing its use. The letter printed below was sent to the administrator and numerous personnel of the hospital that controlled the life and death of our son. The physician-in-chief of that hospital characterised it as a "carefully documented critique'. The letter appear here somewhat edited and abridged and the names of people and institutions have been changed all but our own. It is the personal record of what happened to our baby and to us.

Death↗
PubMed2002

Patient autonomy and the challenge of clinical uncertainty.

Bioethicists have articulated an ideal of shared decision making between physician and patient, but in doing so the role of clinical uncertainty has not been adequately confronted. In the face of uncertainty about the patient's prognosis and the best course of treatment, many physicians revert to a model of nondisclosure and nondiscussion, thus closing off opportunities for shared decision making. Empirical studies suggest that physicians find it more difficult to adhere to norms of disclosure in situations where there is substantial uncertainty. They may be concerned that acknowledging their own uncertainty will undermine patient trust and create additional confusion and anxiety for the patient. We argue, in contrast, that effective disclosure will protect patient trust in the long run and that patients can manage information about uncertainty. In situations where there is substantial uncertainty, extra vigilance is required to ensure that patients are given the tools and information they need to participate in cooperative decision making about their care.

Beneficence↗