Challenges faced by patients, relatives and clinicians in end-stage dementia decision-making: a qualitative study of swallowing problems.

BACKGROUND: Decision-making in end-stage dementia (ESD) is a complex process involving medical, social, legal and ethical issues. In ESD, the person suffers from severe cognitive problems leading to a loss of capacity to decide matters regarding health and end-of-life issues. The decisional responsibility is usually passed to clinicians and relatives who can face significant difficulty in making moral decisions, particularly in the presence of life-threatening swallowing problems. AIM: This study aimed to understand the decision-making processes of clinical teams and relatives in addressing life-threatening swallowing difficulties in ESD in long-term care in Malta. METHOD: The study followed a qualitative approach where six case studies, involving six different teams and relatives of six different patients, were interviewed retrospectively to understand their decision-making in connection with the management of swallowing difficulties in ESD. Data were collected through semistructured interviews with each stakeholder. All data were transcribed and subjected to thematic analysis. RESULTS: Four themes were identified: the vulnerability of patients in dementia decision-making; the difficult role of relatives in decision-making; the decisional conflict between aggressive care through tube feeding versus oral comfort feeding; a consensus-building decision-making process as ideal to facilitate agreement and respect for patient's dignity. CONCLUSION: Decision-making to manage swallowing difficulties in ESD is a challenging process, which involves an interpretation of personal values, beliefs, patient preferences, care needs and clinical practice. Better communication between clinicians and relatives in dementia helps promote agreement between stakeholders leading to a care plan that respects the dignity of patients at their end of life.

Biotechnology and human dignity: a European perspective.

The precise meaning of "human dignity" is increasingly being questioned in ethics and law Is human dignity an adequate guide to policymaking in today's biotechnological era? This article is an attempt to answer this thorny issue. The emergence of the concept of human dignity as a key point of reference for the regulation of modern science and technology in the European Union is evaluated. The main contribution of this article is to prove that in EU Directives and Recommendations, human dignity is not an elusive concept but rather a regulatory restraint in European public policies on biotechnology, particularly through the influence of the European Group on Ethics in Science and New Technologies (EGE). Two examples will be elaborated to prove this claim: first, the issue of intellectual property in biotechnological inventions, and secondly the funding of research proposals involving the use of human embryonic stem cells. These examples prove that the principle of human dignity is not an empty concept as some philosophers and bioethicists claim but rather a normative guideline that is shaping European policies on biotechnology.

Ethical aspects pertaining to the use of pharmacogenetic tests.

Administering medication safely and with confidence is important for both the patient and the prescriber. The individualised adjustment of a medicine dose, based solely on clinical outcomes or the change of a prescribed drug, possibly delays positive patient outcomes. This could lead to suboptimal patient management. Additionally, it could also have a negative pharmacoeconomic impact. The application of pharmacogenetics addresses this matter by refining and improving the safety and efficacy of medicines through a genotype-based prediction of responses. It also stratifies clinical trial populations in drug development in order to identify which patient genotypes benefit most from the drug under study. Although this emerging science presents a lot of prospects, it also raises a significant number of ethical questions. The problem with stratifying patient populations is addressed by promoting responsible and accountable scientific and intellectual liberty. This will avoid discrimination towards vulnerable populations. Therefore, there is a need to encourage informed consent and confidentiality, as well as to promote autonomy, justice, and equity by developing worldwide equivalent ethical, legal, and regulatory frameworks.