Ebola, ethics and the WHO’s decision
The World Health Organization on Monday announced the outcome of its ethical deliberations. It found that, in certain circumstances, it was ethically permissible to use unproven drugs on Ebola patients.
It then listed ethical criteria. These included transparency about all aspects of care, informed consent, freedom of choice, confidentiality, respect for the person, preservation of dignity and involvement of the community.
These are laudable principles but what do they actually mean in practice? The devil is in the detail. If you broke your ankle after slipping on coffee in a hotel, and asked a lawyer if you would win a case against the hotel, you would be frustrated if the lawyer simply recited a legal principle: “the hotel owes you a duty to take reasonable care to see that you are reasonably safe in using the premises”. You want to know whether, in your case, the hotel did take reasonable care. To resolve your problem, the legal principle must be applied to the facts.
Similarly, the WHO’s principles are of limited value in isolation. Take ‘transparency about all aspects of care’. Will there be regular reports presented to the public on patient progress? If so, there is a potential tension with the principle of confidentiality, unless the patients waive their right to confidentiality. Does transparency mean that the identity of the ‘chosen few’ selected to have the drug will be known to others?
How can confidentiality be guaranteed in countries where this principle is not as valued as in the United Kingdom or America? Is it realistic to believe that whoever gets the drug will remain anonymous? If the patient is likely to be identified, this needs to form part of the informed consent process. They may be the focus of intense media attention.
In respect of ‘freedom of choice’, what if dozens of people want the experimental drug but only a few get it? For the unlucky majority, there will be no choice. If freedom of choice simply means the ability to refuse treatment, then it states the obvious.
As for ‘involvement of the community’, how is ‘community’ defined and to what extent will it be truly involved in these decisions? Will there be selection committees deciding who is best suited for the experiment?
Informed consent is another Western ethical concept that does not transpose well into some African communities. In parts of Africa, it is not the individual patient who decides but the family, or the head of the family, or even the village chief. Will all prospective volunteers understand that the world’s media may be at their hospital door, waiting for news, for the duration of their illness, that their families and communities may also be subject to media attention, that their case may be written up in a medical journal, that they are taking part in a clinical trial, that the harms and benefits of the drug are largely unknown, and that if things go wrong, the medical team may not know how to respond.
The ‘preservation of dignity’ is another fine-sounding notion but it already forms part of the ethical duties of healthcare workers. It also sits uneasily with the principle of transparency.
The main risk of providing an untested drug is causing more harm than good. The harm is not limited to the individual patient whose dying days may be prolonged or more painful as a result of the drug, or who died but would have otherwise survived, but the broader harm to the control effort. In Ebola epidemics, trust in the aid workers is key to controlling the outbreak. There is a distinct possibility that the use of untested drugs will backfire, causing greater distrust and animosity towards those who are trying to help. The relationship between health workers and the local population is already tense in places. That is why local knowledge, and a historical understanding of how such efforts have backfired in the past, is so crucial to the development and implementation of an ethical and effective treatment protocol.
Ultimately, the value of the WHO’s ethics meeting will be judged by the aid workers on the front line.
Dr Daniel Sokol, PhD, is a medical ethicist and barrister specialising in clinical negligence and personal injury.