Wednesday, October 15, 2014
Friday, October 10, 2014
Responsibility for collateral ebola damage
Those infected by an infectious disease during an epidemic are the object of immediate concern. Those they expose to infection are an important, secondary concern. But there are further knock-on effects that may be less obvious than (say) the overall economic impact. The Ebola epidemic raising havoc with the older, chronic, HIV epidemic in West Africa. Reliable access to HIV treatment has always been a struggle, but now HIV-positive persons in places like Liberia need to travel to get their drugs. Since only some of those in rural areas have the time/money to do that, treatment interruption and its consequences (viral rebound, etc.) are inevitable. In this way, Ebola leads to death by HIV. But it is not just HIV. Ebola in these regions is compromising health systems that were very fragile to begin with, a reversal of hard-won achievements may be faced on many fronts: malaria, diarrhoea, maternal and child mortality.
So the ethics question: when international and local agencies are engaged to control Ebola in West Africa, should they concentrate on Ebola alone, or do they also have some responsibility to deal with the collateral damage that Ebola has caused?
Saturday, October 04, 2014
A raging epidemic of bioethical commentary
OK, I am being overly harsh. I just hope there is more to the bioethics coverage than what-measures-are-appropriate-to-combat-spread-of-terrifying-disease-or-stop-it-from-getting-to-our-shores. The ethics of urgency, Ethics 911. Ebola's rise and spread in Western Africa is a symptom of what kind of shape those countries are in, not just their health care systems but the social and political circumstances in which those systems are embedded. Ebola can only thrive in messed up places. My prediction is that once Ebola has been contained, attention to the driving forces of poor health in developing countries will get as much attention from bioethicists as it generally gets. Plus ca change.
P.S. Now this is more like it ...
Friday, September 26, 2014
Living large, living long and just getting by
Let's jump to the punch line. Emanuel's conclusion is that he does want to live beyond the age of 75 and, when he reaches that age, he will forgo all medical interventions that aim to prolong his life. Transposing the conclusion to policy, Emanuel concludes that raising life expectancy in a society beyond the age of 75 is not an appropriate public health goal. More attention should be spent on ensuring that sub-groups (like African American males) attain a life-expectancy of 75 years or improving the statistics on infant and adolescent mortality.
These are his conclusions, but how does he get there? What reasons are offered for the 'hope to die at 75' on personal and policy levels? The main reasons are that as people age beyond 75, they experience various degrees and types of physical and mental disability. We all know this, of course, but Emanuel has an especially self-revealing way of mapping this out. A noteworthy fact: the average of Nobel Prize winners is 48. Other noteworthy fact: studies on creativity have shown that classical composers write their first major works in their twenties, peak in their 40's, and then go into irreversible decline. Except for a few outliers, creativity, originality and productivity go downhill after the age of 75. Our thoughts either run along the same well-worn neutral pathways, or the pathways themselves start to fray and fall apart. Sure, one can take other roles, like mentorship, and yet doesn't this too simply reflect (as Emanuel puts it) the "constricting of our ambitions and expectations"? But not only do we progressively become dull as dishwater and daft as brushes. We become burdensome to others, particularly our children, who increasingly have to care for us as we edge further and further into decrepitude. How can they win the Nobel if they have to deal with our shit (pun intended)? And to top it all off, those around us have to bear painful witness to our descent, which (according to Emanuel) has the effect of erasing memories of what we were like when we still had the juice. Because that is the underlying philosophy of life here: don't live long, live large, and get out before you embarrass yourself and burden others.
Yes, this is the philosophy of life of a white male, driven, affluent and privileged, whose career has been marked by important achievements and prestigious positions in academia and government. It is understandable to be concerned about decline when you are so high up in the socio-economic-cultural-political stratosphere. And probably you do not get to that position unless you have always been very strongly convinced that thinking, creativity, productivity, achievement, making social contributions (rather than friendship, love, dancing, hanging out, laughing, skinny dipping, eating pudding) are what is to be most valued in a human life. But what about the rest of us, whose life achievements are unlikely to even get close to the composers, the Nobel Laureates or Emanuel himself? Probably Emanuel at age 75 will be scoring better on all the indices (creativity, productivity, etc.) of the reasons for living than a lot of (younger) people globally, particularly those without the same opportunities, whose capacities have been stunted by oppression. If he does not have a reason to prolong his life then, neither do we.
Friday, August 22, 2014
Susceptible to Ebola, immune to criticism
I read today an opinion piece in US Today that brought the above thoughts to mind. In it, Franklin Graham, the head of the evangelical/relief organisation Samaritan Purse, claims that there is no ethical issue involved in providing Dr. Kent Brantly (employee of Samaritan Purse) privileged access to a experimental drug for his Ebola infection. Those who think there are ethics to debate here are merely intellectual elites ('academics' , 'talking heads' ) far removed from 'primitive deathbeds' in Africa, and the ethical debate -- politically correct analysis from the cozy confines of America -- does nothing to help save people at death's door. Dr. Brantly, the piece goes on, left the comforts of America to provide medical assistance in Liberia, got infected with Ebola in the process, and what happens when he gets access to the scarce experimental treatment? People debate about whether that is ethical or not. This is outrageous, because:
this drug is being used to save a doctor who will say thank you by returning to some of the darkest, dirtiest, loneliest places on earth to bring hope and healing to others. What is the ethical dilemma in that equation?
It is hard to know where to start. I suppose the first point to consider would be the neo-colonial, 'Heart of Darkness' description of someone else's country as the 'darkest, dirtiest, and loneliest places on earth.' Apparently the dark, dirty and lonely people should simply be grateful for whatever help they manage to get, and if American academics say anything, they should be singing the praises of the organisation's humanitarian actions. Therein lies another assumption: if you save the lives of individuals, or if your organisation has the mission to save the lives of individuals, then any critical perspective on you or your organisation is inappropriate. Medical humanitarian organisations sometimes take this defensive stand, despite empirical studies that have shown that they are (predictably) a complicated source of good and bad, rife with ethical challenges, like any other sort of human institution. And as for the assumption is that only faraway American academics have the luxury to raise ethical concerns about giving privileged access to experimental treatment to an American doctor and missionary, i.e. people unfamiliar with and untouched by African realities ... think again. The ethical questions around this issue are being debated within Africa, by Africans, as well. Africans also think about issues of global inequality and injustice when they see socio-political elites being whisked off to superior health care, not just when Westerners get sick and get evacuated to the better hospitals in the brighter/cleaner/happier countries, but also when their own political leaders get sick and are flown up to fancy clinics in Paris or London. It is not politically correct analysis, it is painful reality.
The story about the Americans gaining access to the experimental Ebola treatment does reveal something about the state of the world, including its ethics. Debating the ethics is not inappropriate, nor does it hinder efforts to control Ebola. To see this though, you have to move beyond the missionary position.
Thursday, August 07, 2014
Perhaps because it involves American citizens, bioethicists have been more active in commenting on the ethics of Ebola control than they were during outbreaks of times past. Two of the infected Americans have been treated with an experimental Ebola drug, the access to treatment being aided and abetted by the National Institutes of Health and the Centers for Disease Control no less. Bioethicists, chronic worriers that we apparently are, worry about this development. If the drug has not been FDA approved, how do we know that it is safe and effective? Even if the conditions of the American patients improve, how do we know whether the drug itself is responsible, if no rigorous clinical trial has been conducted? Why would people continue to join clinical studies if they could gain access to experimental drugs outside the FDA's vetting system?
All fine and good, as worries go. But I wonder what would happen if the Ebola outbreak happened in Louisiana rather than Liberia. Would the American public and leadership -- including its bioethicists -- be so sanguine about waiting years for the results of clinical trials before trying some promising-looking drugs out? Faced with an infectious disease with a very high mortality rate, would we revisit and loosen the rules or hold firmly to the tenets of evidence-based medicine? Is the latter what happened, say, early on during the US HIV epidemic? Or is the ethics a bit different when it is largely somebody else's deadly epidemic? For its part, the World Health Organisation seems more open to the use of not fully tested treatments, for Africans, given that the current alternative for most of those affected is (as the Director of the Wellcome Trust put it) a tepid sponge bath and the promise of a nice burial.
UPDATE: The Scientist issued a short piece on the subject of Ebola and ethics last night, and USA Today has a piece up, with reader comments.
Wednesday, July 02, 2014
Bring out your infected!
Which reminds me of Ebola. As an educator in bioethics, whenever you want to provide an example of a disease that seems to ethically justify industrial-strength public health actions, Ebola fits the bill even better than HIV or TB. Easy to contract, impossible to cure, and associated with a nasty clinical presentation and a very high mortality rate, Ebola evokes extreme fear that makes extreme responses to it seem commonsensical. This seems to be the case in Liberia at the moment. West Africa is undergoing an Ebola epidemic, and for its part, Liberia has had 61 cases in the past few months, with 41 deaths. The response? Liberia President Ellen Johnson Sirleaf has declared that anyone caught hiding suspected Ebola virus disease (EVD) patients will be prosecuted under Liberian law.
Will this way of 'being serious about the epidemic' help with disease control or quite the opposite? Families and religious organisations currently taking care of/harboring those with Ebola-like symptoms will probably need to be reassured that these patients will be given respectful, effective care. Shouting at caregivers of the sick may not work, particularly when you realise that when you hand someone with Ebola over to the health authorities, it may be the last you see of them.