Whether adolescents should be allowed to make their own medical decisions has been a topic of discussion in bioethics for at least two decades now. Are adolescents sufficiently capacitated to make their own medical decisions? Is the mature-minor doctrine, an uncommon legal exception to the rule of parental decision-making authority, something we should expand or eliminate? Bioethicists have dealt with the curious liminality of adolescents—their being neither children nor adults—in a variety of ways. However, recently there has been a trend (...) to rely heavily, and often exclusively, on emerging neuroscientific and psychological data to answer these questions. Using data from magnetic resonance imaging and functional MRI studies on the adolescent brain, authors have argued both that the adolescent brain isn't sufficiently mature to broadly confer capacity on this population and that the adolescent brain is sufficiently mature to assume adolescent capacity. Scholars then accept these data as sufficient for concluding that adolescents should or should not have decision-making authority. Two critical mistakes are being made here. The first is the expectation that neuroscience or psychology is or will be able to answer all our questions about capacity. The second, and more concerning, mistake is the conflation of decision-making capacity with decision-making authority. (shrink)

Until a few years ago, the prevailing view was that children should not be participants in clinical research trials because children were incapable of consenting to such nontherapeutic interventions and are particularly vulnerable to abuse. That view has undergone a significant shift in the last few years, particularly in the context of trials to test the safety and effectiveness of drugs. A number of events facilitated this change, including the widespread off-label distribution of drugs to children and developments in the (...) AIDS epidemic. These social forces have shifted the core ethical question from whether children should be research subjects to when children should be research subjects.The presumption in favor of including children as research subjects for drug trials has manifested itself primarily through two different reforms: a 1997 federal statute and a set of regulations promulgated by the Food and Drug Administration that recently became effective. Together they reflect the view that children deserve the same access to safe and effective therapies as adults. (shrink)

In 2014, Article 3 of the the Belgian Euthanasia Act (2002) (the Euthanasia Act) was amended (‘the Amendment’) to include the ‘capacity for discernment’ requirement. This paper explores the implications of this highly controversial Amendment. I remain unconvinced of the benefits for children < 12 years old suffering chronic or terminal illnesses. In Part One, I argue that the phrase ‘capacity for discernment’ is problematic and vulnerable to abuse; neither a consistent, widely accepted definition of the phrase has been established (...) nor a standardised method or procedure to adequately gauge a minor’s capacity for discernment. In Part Two I advance the argument that specifically for children < 12 years, aggressive and sophisticated paediatric palliative care treatment, which risks, but does not intend death, is more ethically justified than Euthanasia treatment. A definition of a child’s interests is best achieved through a care-based ethics framework; namely, the child’s relationship with their parents and family members, their doctors and medical practitioners is held to be an interest of crucial importance for the child. I conclude that paediatric palliative care arguably better promotes and upholds this interest. (shrink)

Every healthcare organisation enacts a multitude of policies, but there has been no discussion as to what procedural and substantive requirements a policy writing process should meet in order to achieve good outcomes and to possess sufficient authority for those who are asked to follow it.Using, as an example, the controversy about patient’s refusal of blood transfusions, I argue that a hospital wide policy is preferable to individual decision making, because it ensures autonomy, quality, fairness, and efficiency.Policy writing for morally (...) controversial medical practices needs additional justification compared to policies on standard medical practices and secures legitimate authority for HCO members by meeting five requirements: all parties directed by the policy are represented; the deliberative process encompasses all of the HCO’s obligations; the rationales for the policy are made available; there is a mechanism for criticising, and for evaluating the policy. (shrink)

Imagine that you are a teenager and have cancer. You undergo a year of chemotherapy and after a brief return to normal life, you have a relapse. Your physician says that chemotherapy and radiation therapy could be tried, but a bone marrow transplant is your only chance of a real cure. He tells you and your parents that you could die as a result of complications from the transplant, but without it you would only be expected to live one year. (...) You and your family discuss the alternatives and decide to have the transplant. You ask what will happen if the BMT fails, but both your physician and your family tell you that right now you must fight to get better and not think negative thoughts. You do not ask any more questions. (shrink)