Hannah Faith Leigh
Option A: to continue treatment in the form of intensive care; the child may survive but with severe deformities.
Option B: Switch to palliative care and withdraw/withhold treatment.
Which would you choose? It’s pretty difficult to imagine in this scenario what you would do. In a society where one could argue our moral compass is open to interpretation, perhaps this sort of decision has no clear immediate answer. So which option is lawful? And who is it that sets the guidelines for making these decisions?
The answer to this kind of dilemma, or at least a discussion of similar scenarios, was what we expected from a lecture on Ethical Dilemmas In Healthcare on Wednesday 14thNovember. Presented by Hugh Whittall, Director of the Nuffield Council on Bioethics (introduced as Hugh Nutall, but not by any means nutty) the lecture was part biography, part theory, and offered very little in the way of answers.
‘FYI’ quipped our lecturer, by way of introduction, and rattled off his CV. Mr. Whittall worked at the Department of Health on human fertilization and embryology with emphasis on the ethics surrounding IVF in its earlier days. He then joined the European Commission in Brussels to encourage the formation of a multi-disciplinary team of medics, scientists and philosophers who would make policy decisions about how to handle ethical issues in healthcare. This ‘crowd’ comprised a number of Cambridge geneticists and philosophers, whose prime directive was to distinguish the ‘etymology from the metaphysics in bioethics‘. In the style of Hugh Whittall: “LOL”.
So what are these ‘ethical dilemmas’ that face our society and keep people in the Nuffield Council on Bioethics in a job? Genetic testing: should there be disclosure in families about the existence of a hereditary disease? Should there be a DNA database? Should we introduce electronic tagging for dementia sufferers? How about the use of restraints? Is it right to lie to someone with dementia who continues to ask for his wife who has been dead for 5 years? These along with lifestyle issues such as obesity, the emergence of new technologies and telemedicine (the remote monitoring of compliance with medication) were some of the examples we, the audience, were made aware of.
The quips continued as Hugh guided us through the world of transparency and trust, public awareness and interest. He contrasted the cost of a book on The Ethics of Banking at £139 with Trust Me I’m a Junior Doctor at one penny, and the public outrage at fouling in football juxtaposed with the reaction to the withdrawal of penicillin for black men, in the treatment of Chlamydia, in the south of the USA, during the 1970s.
The Nuffield Council on Bioethics is an independent body, which produces reports on ethical issues within biology and medicine. The impact of these reports was made clear when Mr. Whittall described the council’s intervention on the forensic use of biological information and the police DNA database. The Council suggested that keeping DNA on file irrespective of charge was an unwarranted intrusion. As a result the European Court of Human Rights forced the UK to change its policy.
The reports produced by the Council set a framework for responding to different situations, which of course differ on a case-by-case basis. Guides to these reports are usually 20 pages long, and if any of you reading this are in doubt as to Mr Whitall’s independence from government, you will be reassured that these are made into a one-page format for MPs.
With regard to public health, the council suggests that the role of the state be based on stewardship and an ‘intervention ladder’, for instance, in cases of: infection, obesity and smoking, the level of involvement should be evidenced. This can range from doing nothing (bottom of the ladder) to legal prohibition and war (top of the ladder), where the latter requires a great deal of justification and evidence.
To answer the title of this article, the guidelines from Nuffield on the withholding or withdrawal of treatment vs. living with a disability can be found in the report on Critical Care Decisions in Foetal and Neonatal Medicine (2006). However, in short, if decisions are made consensually by the parents and doctors, and are in the best interests of the baby, they are considered lawful.