Summary: Patients potentially infected with Ebola have the right to experimental treatment outside of randomised controlled trials. Consent should be sought while they are competent if it is anticipated that they will lose competency through the disease. In the most extreme emergencies, experimental treatment could be given without consent in the public interest. However, in such extreme emergencies, such if the virus were to mutate to become very highly transmissible, selection of patients for such trials should be on a principle of justice. This would generally require selecting patients with the worst prognosis as initial subjects. Whilst the current outbreak has been declared an international health emergency, it does not warrant over-riding standard ethical principles of consent and autonomy.
WHO are convening a meeting next week to discuss the use of untested treatments for the current Ebola outbreak, which it has declared to be an international public health emergency.
Dr Marie-Paule Kieny, Assistant Director-General at the World Health Organization explained “We are in an unusual situation in this outbreak. We have a disease with a high fatality rate without any proven treatment or vaccine,”
With a fatality rate of recent outbreaks at around 50%, and current treatments consisting of little more than rehydration, it is easy to see why this experimental approach is an attractive option. Jeremy Farrar, David Heymann and Peter Piot argued convincingly in favour of such measures.
However, there are a number of diseases which meet Dr. Kieny’s criteria of “a high fatality rate without any proven treatment or vaccine”. While Kieny is referring to infectious disease, sufferers of other diseases have campaigned for many years for access to untested medicines. Along with several colleagues, I wrote a paper on this subject with Les Halpin, who recently died from motor neurone disease, having campaigned for access to medicines for many years
The case for
I have argued that, when a patient is facing a certain death from an incurable disease, the relative safety that randomised controlled trials provide is unnecessary- especially when the payoff is a placebo group of patients who receive no benefit at all.
One common reason in support of randomised controlled trials is safety. This is true for most patients: patients for whom there are other good treatment options, or whose disease is not itself life-threatening. But for some patients, this concern is a cruel irony. Their disease is so overwhelmingly unsafe that any risk is outweighed by potential benefits. Udo Schuklenk reports Martin Delaney, a trial patient for AIDS who described the situation vividly:
It is as if I am in a disabled airplane, speeding downward out of control. I see a parachute hanging on the cabin wall, one small moment of hope. I try to strap it on, when a would be government employee reaches out and tears it off my back, admonishing, ‘You cannot use that! It does not have a Federal Aviation Administration sticker on it. We do not know if it will work’
In 2005, the NZ Herald reported. “A man with motor neurone disease plans to starve himself to death rather than wait to die.
“Thirty-nine-year-old Andrew Morris of Hamilton has limited movement and can barely speak. He has gone public with his decision because he wants law changes to allow voluntary euthanasia.”
Such cases occur not infrequently, around the world. Last month, John Rehm took his life by dehydration. NBC News reported:
Diane Rehm and her husband John had been married for 54 years when he knew he didn’t want to live another day.
His Parkinson’s disease had become unbearable. “He just kept getting weaker,” the NPR host told NBC News. “We called in the doctor and John said to him: ‘I am ready today.’ He said ‘I can no longer use my legs, I can no longer use my arms, I can no longer feed myself.’ And knowing with Parkinson’s it is going to get worse rather than better, he said ‘I wanted to die.’” He asked the doctor for help.
The answer they got surprised and disappointed both of them. “The doctor said ‘I cannot do that legally, morally or ethically’,” Rehm said. “He said ‘I don’t disagree with your wish that you could die with the help of a physician but I cannot do it in the state of Maryland.’”
John Rehm had to deliberately die by dehydration. It took nine days.
“John said he felt betrayed,” Rehm said. He said, ‘I felt that when the time came, you would be able to help me.’”
In a recent, short commentary on the sad case of Tony Nicklinson, I argued that two basic moral rights effectively equate to a legal right to slow assisted dying. In one sense, Rhem’s doctor was wrong.
Firstly, everyone, including Mr Hamilton, has a basic right to control what goes into their bodies, including food and fluids. Everyone has a basic right to refuse to eat and drink, even if this results in their death.
Secondly, everyone has a basic right to health care, including the relief of pain and suffering. As someone is dying, they have a right to palliative care to achieve that end. This includes the administration of narcotics and sedatives, as necessary to relieve their suffering and as requested by the patient. This is so, regardless of whether their suffering is self-inflicted or not.
[W]e have no non-radical solutions left to deal with climate change… either we face a radical climate catastrophe or we must radically shift our economy and modes of social organisation away from the current fossil fuel economy
That was the message given by David Spratt, author of Climate Code Red, and Ian Dunlop, who formerly chaired the Australian Coal Association but has since become a climate activist, at the Breakthrough 2014, National Climate Restoration Forum, last month in Melbourne, reported by Green Left Weekly.
Debate continues about when and how geoengineering might ever be deployed. Amongst environmentalists, support for geoengineering methods is low. Green Left Weekly explains:
as Clive Hamilton describes in his book Earthmasters, geoengineering technologies are supported by leading climate denial organisations and by the fossil fuel industry. This is because they seem to offer a way that fossil fuel use can continue unabated. The side effects of these technologies could be brutal: for example, severe drought in Africa and Asia. Moreover, if spraying was stopped, temperatures would rise rapidly, leading to even more devastating impacts.
Will regulation help? Green Left Weekly argues that governments have been unable to regulate fossil fuel industries effectively, and that they will be unlikely to succeed more here.
It is fruitful to look at comparisons with human genetic or biological modification, or human bioengineering.
Both are complex systems affecting life processes. There has been considerable debate and reflection on human bioengineering, human bioenhancement or genetic selection. Could the results of this reflection be of use in considering the ethics of geoengineering?
By Julian Savulescu. @juliansavulescu
The Australian newspaper ‘The Sunday Age’ reports today that “The Australian Sports Anti-Doping Authority has built a ”non-presence” drug case against 34 Essendon footballers, adopting a strategy similar to the one used to ban Lance Armstrong without a positive test.”
1. What should we think about this latest drugs “scandal” at Essendon, the so called “war on doping” in the Australian Football League (AFL), and in sport in general?
Imagine that you and your partner are having a baby in hospital. Tragically something goes wrong unexpectedly during birth and the baby is born blue. He urgently needs resuscitation if there is to be a chance of preventing permanent severe brain damage. How long would it be reasonable for doctors to wait before starting resuscitation? 15 minutes? 5 minutes? 1 minute?
What would be a reasonable excuse for delaying the commencement of resuscitation? They wanted to get a cup of coffee? The mother wanted to hold the baby first? The mother had catastrophic bleeding and this needed urgent attention?
If it were my baby, I would not want any delay in starting resuscitation. And there would be no justification for delaying resuscitation except some more serious, more urgent problem for another patient, such as the mother.
Yet when people choose homebirth, delay is precisely what they choose. It is simply not possible to start advanced resuscitation in the home within minutes. And their reason is not typically some relevant competing health concern that necessitates delivery at home.
Choosing home birth is choosing delay if some serious problem arises which requires immediate resuscitation.
In recent years, I’ve written a lot on moral enhancement, including moral bioenhancement (e.g., here, here and here), and argued that we should not reject its potential benefits out of hand. One common objection has been to say something along the lines of “sure, this would be good in theory, but the science behind it is so far off that you may as well be talking about the number of angels on a pinhead”.
But recent research suggests our moral behavior is already improving in some respects. In the UK, admissions to hospital due to violent crime fell by 12% . And in the US, a recent survey revealed a decline in violence experienced by children over the past decade, particularly assault and sexual violence. This is also a major theme of Stephen Pinker’s “Better Angels of Our Nature.” Pinker documents the widespread reduction in violence over centuries.
Back in 2010, I blogged about Craig Venter’s creation of the first synthetic organism, Synthia, a bacteria.
Now, in 2014, the next step has been made by a team at John Hopkins University, the use of synthetic biology in yeast, which, whilst still a simple organism, has a similar cell structure to humans (and other more complex organisms): a nuclei, chromosomes and organelles. The engineered yeast has been reproduced to over 100 generations, passing on its new DNA.
The pace is breathtaking. Moore’s law describes a phenomenon in computing, where computer capacity (so far) doubles every two years. Kurzweil uses Moore’s law to predict the ‘singularity’: a state where humans no longer control, or even comprehend, the progress that technology continues to make.
It’s difficult to measure scientific progress in the same way as computer power, but it’s clear that leaps in progress are now measured in years, not decades. Yet still we wait until technology is upon us before we act.
It’s got Nobel Prize written all over it. The scientific innovation, CRISPR, which enables accurate ‘editing’ of DNA (compared to current techniques where a viral vector introduces the DNA at random), has had one team member “jumping out of my skin with excitement”. Still at basic science level, it has already been hailed as a potential new treatment for Huntington’s Disease, HIV and other disorders. It is apparently so easy to use that Professor Mello, who was involved in the project, has said, “a total novice in my lab got it to work”.
One possible application that has been suggested is ‘correcting’ the germline: changing the genetics of sperm, eggs and embryos, to eliminate diseases not just in individuals, but in future generations. The designer baby is in production.
A tragic case was recently reported of a man who died following botched care via the NHS’ telephone helpline. Suffering from blood poisoning, a series of errors, mis-recording and failure to listen meant that he was told simply to take the remedy ‘Gaviscon’. He died shortly afterwards. This was rightly widely reported in the press as a major failing of the health system. Many such catastrophic errors in medicine are reported in the press, and wherever possible safeguards put in place to prevent their re-occurrence.
However, we seem to accept deaths that occur not through medical mistakes but through what I will call moral mistakes. For example, each day 3 people die on the waiting list to receive organ transplants. Many of those could be saved if all those eligible and consenting to give organs did so. But instead, organs are withheld even when those who have opted in to organ donation die, because their families decide against it. Others are withheld because we have failed to introduce an opt out system of consent, meaning that those who simply never got around to signing up are excluded from bringing life to another person.
This is just one example of how mistakes in medical ethics can kill people. There are many more.
Winchester Lectures: Kamm’s Trolleyology and Is There a Morally Relevant Difference Between Killing and Letting Die?
The Winchester Visiting Lecturerships were established in 1995 for the purpose of inviting visiting lecturers in the fields of International Relations, History, Philosophy, Religion, Theology or Law. We are grateful to the committee for this opportunity to bring Professor Frances Kamm to Oxford for this series of two lectures October 21 – 22, 2013.
Over the series, Frances Kamm considered a kaleidoscope of cases in which one innocent person must be killed to prevent 5 innocent people being killed. She argued in some situations, killing one is permissible to prevent 5 other people being killed, yet in other cases it is impermissible to kill one to save 5. Or so go her intuitions. She points to what she finds are morally relevant considerations that distinguish permissible from impermissible killing.
The most straight forward case of impermissible killing, and the one in which she and many others have a clear intuitions, is Transplant.
In Transplant, a doctor contemplates killing one innocent person and harvesting his/her organs to save 5 people with organ failure. This is John Harris’ survival lottery.
But this is a dirty example. Transplant imports many intutions. For example, that doctors should not kill their patients, that those with organ failure are old while the healthy donor is young, that those with organ failure are somehow responsible for their illness, that this will lead to a slippery slope of more widespread killings, that this will induce widespread terror at the prospect of being chosen, etc, etc
A better version of Transplant is Epidemic.