Rwanda Day 7: Doing good when you’re trying to do good

It’s done. Day 7 of the trip (day 6 of the surgery) and 18 operations are done. We are OK with this.

Our local colleagues doing the heavy lifting during the final operation.

Our local colleagues doing the heavy lifting during the final operation.

It’s not the end of the work for everyone. There’s plenty of nursing still to come and some more work for the physic for starters and it will be days before the last of the team move on. We do try to get out of the way of the operations of the hospital as much as possible though. One hour after the end of that operation, this was the operating theatre …

2 hours later, it was being used for someone else's operation.

2 hours later, it was being used for someone else’s operation.

In a few spare moments today I had the chance to talk to an anaesthetist from Utah (sorry, anesthesiologist) who has been working around Africa for the last 3 years. He spent a year in Guinea working with the Mercy Ships organisation (and wow for the work they do). He’s been in Rwanda for a couple of years now.

At one point he used a very revealing turn of phrase.

“I’ve been on the receiving end of quite a few of these aid trips now …”

Hear that? “on the receiving end”. What? The presence of aid trips isn’t an unqualified story of joy, peace and goodwill?

Terrible Package Tourists

Turning up to do surgery in a less equipped place on the other side of the planet causes lots of problems if not done right. The hospital we’re at in Rwanda sees up to 5 aid groups in any one year.  If you’ve had a chance to read a few of these posts, you have probably noticed that we generate plenty of work. It doesn’t take long to figure out that that could lead to issues.

These short, sharp surgical trips have a particular reputation for sweeping in, doing some ego-boosting do-gooding and flying out into a sunset that blinds them from the reality of what they’ve left behind. Disaster situations are another example where well meaning but misguided aid workers, or worse, can cause real disruption. All sorts of people turn up promising to help, but turn out to be a liability as they buzz about like drunk bees. Useless helpers have a sting.

If you turn up to provide help and end up just leaving a different burden, that qualifies as pretty inappropriate and unethical. There are a few key things the aid trips I’ve been on have endeavoured to address. (Here’s the bit where I do a list to break up the reading monotony.)

1. Make Plans

Not just for surgery. As an aid group you need to tread as lightly as possible on the health system you’ve come to help. Every thing you don’t bring is something you’ll take off them. Preventable complications will probably fall to the locals to fix. Planning at first sounds like the sort of thing you’d discuss in “Financial Advisers Without Borders”. It really is the thing that guarantees mission success.

2. Don’t Let it Slide

You might be in a place without your usual stuff. You may have to work in with a system with different expectations. That doesn’t mean you can go easy on your own standards. If you can’t provide an acceptable level of care for a particular thing then it’s important to recognise that it is beyond even adjusted means of getting things done safely and appropriately. The manner in which this is weighed up will differ in each scenario and is very different in a disaster, but standards matter.

3. Make Sure It’s Not About Those on the Aid Trip

The reason you turn up is to offer some sort of care that the local health system can’t provide themselves. That means the job of those on the trip is to provide the care right now for the kids in a way which fits in to the health system you’ll leave behind. The locals are there before you arrive and still there when you leave. The aid trip is about 1% of the story. It’s about the kids and the locals, not making yourselves look good, or getting through as many cases as possible.

4. Choose Wisely

You have to set some form of limit. If you turn up to do orthopaedics, doing plastic surgery isn’t appropriate. Likewise you want to do the sort of operations that provide benefit but don’t require weeks of intensive care. You can’t tread lightly in an intensive care unit. If you do work on the absolute sickest with minimal chance of success, you end up leaving untreated many more who would be much more likely to gain benefit.

There will also be complications on these trips and that has to be taken into consideration or the local teams end up dealing with chronic long-term issues that may sap resources better used elsewhere.

5. Leave More Than The Sutures

This is not so much about the equipment you should also leave where you can. There have been those who used to go on aid trips and didn’t engage beyond the specific stuff placed in front of them. It is more important to help build a system than it is to just turn up. What happens for the other 350 days of the year you aren’t there?

We’ve been invited to come to provide something that isn’t feasible right now in Rwanda. We would hope at some point we’ll be given the job of hanging out in the corner while the locals get straight into it. Through education, services or modelling, aid teams should be able to have people feeling like they can kick us out of the room. Then at some point they will and that would be the best we could ask for.

6. The Next Trip Starts Yesterday

Each trip has to develop expertise in your team and in those you’re helping. The moment we finished operating yesterday we packed. We packed equipment for the ongoing trip to Tanzania but we started packing and planning for the next Rwanda team. Better supplies of equipment left at the hospital. A review of things that could be done better. Not doing it better is just a lot of treading water.

 

You may have had the joy of a young kid offering to help in the kitchen. It can go well. It can get pretty messy and that kid will be likely to notice the greater joys of the lizard in the back yard when it’s time to clean up.

Aid trips can be their own disaster. Do-gooders are good at not doing good. It’s not enough that the kids are now smiling at us on the ward and planning to fly kites on the lawn in the morning. We need to have more kids and our hosts smiling when we come back.

 

Interested in reading other bits on ethics and aid work? You could try this thing by Wolfberg  or this thing on the early Haiti disaster response.

 

I’ll be leaving Rwanda today but other members of the team (plus new members) are off to Tanzania. The guys from Open Heart International will be sharing more from this trip over at www.ohi.org.au where you can also consider donating or volunteering (which is easier if you are in Oz).

If you’ve dropped by any of these posts and had a read or shared them with others, a very sincere thank you.  

 

 

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The Challenges of Speaking Up

I have an early memory. A memory that does me no credit. I’m a kid, maybe 5 or so. I’m in a playground and there’s a slightly older kid who really wants to use the slippery dip. There’s a younger kid in the way. And when he hatches a plan to run the kid away a bit, then push him over so his parents will come to scoop him up, I can see what’s happening and I don’t speak up. It all unfolds and I’m silent.

I don’t even quite know why I’m silent. I can’t quite put my finger on why I don’t speak up to stop the squeeze in my chest somewhere. It’s a memory that’s been reconstructed that replays from time to time. It replays whenever I am reminded of how difficult it is to make some sound.

Giving Voice

I’d like to think that as a doctor I’d speak up now if something was happening in front of me. I’d like to think I’d start making noises like the doctors in this story, covering details of a 92 page letter written by doctors working with a health contractor in the offshore detention centre. Or Dr Caroline de Costa, detailing concerns about obstetric and perinatal care in detention centres here and offshore. I would like to think I’d take steps to address the erosive ulcer at the heart of refugee policy – the denial of humanity endorsed by the civic machinery of successive governments.

In recommencing then continuing offshore detention, federal governments have wasted no opportunity to demonise a voiceless group to suit political ends. It has steadily reached new peaks of absurdity under the current regime, fronted by a minister who seems a little too delighted at being given real navy ships to play with, rather than those usually reserved for bath time.

To ‘take the sugar off the table’ we have to impose ever harsher conditions. Media are not allowed in, but have the opportunity to hear the Foreign Minister refer to conditions as better than mining camps (presumably the sort of mining camps where you can’t leave, have extremely limited access to basic amenities and can’t work). Governments do all of this because they know that once the public truly identifies with asylum seekers as human beings, the game will be over.

The Kids

Nowhere is the horrifying institution of these policies more distressing than when considering the plight of children. If you need an international reference, then perusal of the UNHCR – Refugee Children: Guidelines on Protection and Care has it all. The Convention on the Rights of the Child clearly states that “Every child has the right to the “highest attainable standard of health” amongst other goals that aren’t actually that lofty.

The simple goals stated such as nutrition, opportunities for appropriate stimulation, adequate clean water and hygiene are all too high for the camp conditions to consistently maintain. Transfers out to address issues like defective pacemakers seem too difficult. Children are being held in centres where frustration boils over to violence and abuse. As in so many situations, children bear the scars of the folly of  adults. But this time, it is a government acting in our names inflicting those scars.

Futility in Action

To top it off, it’s hard to see how this approach will succeed in influencing refugee arrival patterns in the long term. For all the hyperbole attached to the numbers of arrivals by governments, placed in context they are a drop in a global current. The numbers from Syria alone are staggering.

Australia has agreed to take 500 of these people.

Australia has agreed to take 500 of these people.

The future is likely to see vastly increased numbers, not decreasing numbers. That growth will surely swamp any deterrents advertised by politicians. If the goal is truly to stop drownings at sea, then it’s time to genuinely engage with regional solutions rather than dazzle the populace with shiny generals’ stars.

See No Evil, Hear No Evil, Speak of Nothing

What is abundantly clear is that there can be no hope that the current political class will alter course through a sudden revelation on the road to whichever illusory Damascus they set out for. That letter from the doctors was received in government circles on December 6. On December 13, the Independent Health Advisory Group providing support on asylum seeker and detention health matters was advised they were no longer required. Less engagement advertised as ‘streamlining’.

A bipartisan touring party visited, with the Foreign Minister lauding conditions, as noted above. Of course, the fact they hadn’t inspected the facilities for the actual asylum seekers was only confirmed after further reporting.

Another farcical briefing from the relevant minister on Friday, replete with the usual refusal to engage with the actual matters at hand ensued. The standard patter, dense with references to investigations and processes seemingly designed to distance himself from a responsibility to act were all that was allowed.

The Doctors’ Response

So we are left with the efforts of the medical professionals on the ground. They have concerns as to whether they are threatening their own medical registration by being part of the system. Thankfully they have not forgotten their duty to the patients in front of them, and are advocating for change from within.

It cannot be easy to be faced with a situation where your care is limited by the structures above. They are seeing the grim effects of an inhumane system seeking to crush the few to send some sort of message to the many. Even with their advocacy, the experience will undoubtedly haunt the rest of their careers and scar them as well. That they are seeking to stay and produce change is something we should all be grateful for.

In Our Name

This treatment of asylum seekers is being conducted in the name of the people of Australia. The most extraordinary element of that original story is the following quote towards the end:

“According to the doctors the same IHMS manager told them in September: ‘There will one day be a royal commission into what is taking place on Christmas Island. He suggested we document well.'”

There is another royal commission proceeding in Australia at the moment. It is exploring the devastation across many lives and generations after institutional child abuse. At the time it may have been that the problem was hidden behind the curtain dropped by trusted bodies.

Those delivering health care, including the company contracted to do so, are telling us that child abuse is happening now, in institutions overseen by the federal government. The Northern Territory branch of the Australian Medical Association says the same. We cannot claim ignorance.

The Minister for Immigration and Border Protection, Scott Morrison, is the guardian for all unaccompanied minors in detention. If you were in the position of being guardian to those children, I’d venture that you would see only one appropriate response – get the children out.

Politicians on both sides are pursuing a policy that seems destined to fail in its aim, and asking us to accept a high price on their way. The doctors involved seem to be trying to find their voice. Now I just have to figure out how to lend mine and convince others to do the same.

Oaths I Never Swore

There’s a common misconception around the manner in which doctors graduate. All sorts of people assume that when we go to graduate, there is a sacred swearing of oaths, particularly the Hippocratic Oath. And every time someone mentions this to me, I break out in a slight cold sweat and wonder if I missed the all important tribal council meeting. The one where all potential medical graduates have to wrestle a snake and tie it in knots around a staff to win immunity and walk away carrying the rod of Asclepius. Unless they want to be psychiatrists in which case they get inside the serpent’s head, make it examine its life at length and eventually have it realise that twisting around a staff represents self-actualisation.

Actually, quite glad snake handling wasn't part of the qualification. [via m.inmagine.com]

Actually, quite glad snake handling wasn’t part of the qualification. [via m.inmagine.com]

The Ethical Doctor

The thing is, I never took any sort of oath like that. I think the last time I swore an oath was probably when I was a scout learning to tie knots and shave cats (not in a bad way, really). Taking the Hippocratic Oath (or a modern version) is very common in the US graduation rituals, but not such a feature in the Antipodes. Which is not to say we didn’t get lots of coaching in medical ethics, with some of Hippocrates’ bon mots still in there. Just no secret handshaking solemn oath-swearing rituals.

If I’m reflecting on how doctors develop their understanding of ethics, and whether that’s changed over time, it’s because I recently read the most astonishing article I’ve seen in a long time, by Emily Bazelon and appearing in Slate. It details a history I’d not heard of regarding the anatomists working throughout the period of Nazi rule and their acceptance of the bodies of those executed by the regime. Acceptance and even cooperation. More than this it poses big but essential questions. How do we judge historical practices by modern norms? Should we build off knowledge gained in horrifying circumstances? How far would ethical practitioners go when surrounded by a drifting crowd? And what happens when knowledge gained in such a manner is distorted further?

Different Times

At a time when bodies for advancing anatomy were hard to come by, it was common practice to use the bodies of the executed. When the Nazi regime started executing much larger numbers of prisoners, including women, the question of whether to study those bodies seems not to have been considered. And so it was that Hermann Stieve suddenly had access to the bodies of women executed who had lived with the stress of being condemned to death.

Stieve established that stress alters the female reproductive cycle. Fast forward a few decades, and the idea that stress makes it impossible to fall pregnant makes it way into the suggestion that a woman can’t conceive in cases of “legitimate rape” (*shudder* and no link to that drivel). The ills of that ridiculous statement are for another post (and probably another writer). To conduct the research that led to this, Stieve accepted many more bodies than he would require, and coordinated execution times with prison authorities. Is his conduct that of the pragmatist operating by the ethics of the time seeking to understand the world around him, or someone colluding with a terrible regime without due regard for human life? There are arguments both ways, but there would have  to be a certain degree of callousness to proceed in the manner he did.

One of a Crowd

The article makes it clear though that Stieve was hardly alone in this practice. Around half of the doctors in Germany at the time joined the Nazi party. Many terrible experiments were conducted at the time. Were they the product of a prevailing lack of ethical considerations, or the result of a drift in morality starting at the top, allowing behaviour that would never usually be condoned?

There are of course other studies that have been done over the years which hint at the extent to which individuals will adopt the morality conditioning of the situation built around them. The famous Milgram experiment where subjects were asked to deliver shocks to help “teach” an individual in a memory exercise revealed 65% of participants would deliver (false) electric shocks right up to a dangerous level. The Stanford Prison experiment is another example of research showing the powerful effect of situation on the behaviour of individuals (although the conduct of the study was itself questionable ethically).

After the war, only a few hundred doctors were deemed to have been involved in crimes, although the implication is that no serious effort was made to investigate initially. Follow-up work by Milgram indicated that even having a single other participant involved in delivering the shocks was enough to drop the rates of completion to the full shock range, as strength was gained when the other showed disquiet. So was the concept of ethics so different at the time that there weren’t more voices being raised to dispute what was happening, or was the silence evidence of the fear created by the regime if you did object?

Standing on Tainted Ground

One of the factoids I remember from my studies was that a commonly used drug in anaesthesia, pethidine, was explored as a potential nerve agent by Nazi scientists as it has atropine-like effects similar to some toxins. It stuck for obvious reasons although I struggle to find corroboration now. It may be that as it came out of the infamous IG Farben labs (the company responsible for much of the machinery that allowed for the operation of the gas chambers), it has been tainted by association even if it wasn’t part of the primary research by that company.

It came back to me when reading the source article – how much of what I know or rely on in my day to day work has its origins in research tainted by how it was conducted? What do you do if that information bears stains? Is it unethical to use that knowledge, or more unethical to not apply that knowledge to achieve good things?

Arthur Caplan, a bioethicist at New York University, is quoted providing some suggestions for how to deal with tainted data which could apply to medicine or science generally. His approach amounts to:

* Use it when there’s no other choice (the life-saving situation or very important stuff).

* Admit where it came from (this, of course, supposes that you know those details).

* Don’t give credit to the individual who did the tainted research by name.

Is this enough to perfume the stench though? Is it even realistic to think that most practitioners know the deep history informing their everyday practice?

Where now?

There is knowledge that has been uncovered over centuries in ways that would be considered unacceptable now. To discard all that knowledge would be impractical and ultimately self-defeating, as there is much of it that couldn’t be established again. Perhaps Caplan is right in that removing the individual researchers from the history but allowing good to come of the knowledge is the best way to provide redress.

In the meantime, these stories are a stark reminder of the need to constantly wrestle with the ethical principles that underpin modern medical practice. And I probably don’t need to swear an oath to Greek deities to remind me of the importance of that. Part of me wants to go and wrestle a snake now though.

Whales Designed by Committees

18 months. In 18 months, my youngest has figured out how to walk, climb everything in sight, file various foodstuffs in the video (yep, still have a video), recount a long fairly incomprehensible story punctuated with pointing and dance like Snoopy. If I was able to figure out a way to inseminate a whale, it would have had time to calf (and I suspect I’d have an alternate career). And 18 months is the amount of time it took between me lodging the initial ethics application for my project and getting the final amendments approved.

Now, that might seem like I must have got a little careless at some point along the way and forgotten the whole thing was on. It’s actually a story of what it’s like doing your PhD part time, the delays that are standard as the whole thing works its way through the system and a little bit of poor timing.

In the spirit of research collegiality then and the theory that a PhD is more about what you learn on the way than the final thesis, herein are the lessons gleaned from this experience. Ultimately I had success, so follow these steps (starting here with the National Ethics Application Form and the SSA forms for NSW, Qld, SA and Vic) and you too can spend a year and a half of your life sending love letters back and forth to your friendly ethics committee.

1. Make sure to submit your application just before Christmas

Everyone likes holiday reading, right? If you’re considerate by nature, you’ll lodge all your paperwork in time for the final sitting of the year for your chosen ethics committee. That way they’ll just get time to review the notes the first time, not quite resolve anything, and then have to rehash the whole thing over in the subsequent meeting after the break. They also get to spend the break occasionally thinking about the hundreds of pages they get to read on their return.

You also get to twiddle your thumbs waiting for your approvals. Win win. Time added: 3 months

2. Leave yourself little things to fix up

The ethics committee probably has a bunch of guidelines they widely publish, or standard bits they’d like you to include in any application. You know, particular wordings for any information sheets or consent forms. Standard disclaimers or formatting requests. A request not to use jargon words.

So you should absolutely make sure that you put every single one of those in, bar one. That way, when they do their feedback, they’ll have to get you to change about one line of every bit of paperwork, and you’ll get the chance to do just a little more work on the basic text stuff, plus all the proof reads to check there wasn’t something else you messed up. It’s rewarding for both you and the committee to have done heaps of work, and have to revisit all of that, because you messed up one sentence. Time added: 1 month.

3. Lodge your ethics application with a committee in flux

Anyone can get their project approved by a committee that’s been operating in their standard way for as long as time has been recorded. What you really want to do, is lodge your ethics application with a committee that has just been amalgamated between 2 campuses.

That way, your project is a part of bringing disparate groups of people who’ve never met before and letting them thrash out the ways they will work forever more. So you’re not just lodging a project for consideration. You’re part of spreading peace and harmony. Time added: who knows?

4. Take the opportunity to practice the art of zen

It’s always nice when your efforts to do the right thing pay off. For instance, say you are working with an external entity you’ll need to sign an agreement with the committee to guarantee they’ll review your application (an external entity agreement). Then you can include it in your paperwork, so they know that’s all sorted.

It also means you’ll get to enjoy gems like the following 2 feedback points:

“6. As an external entity, separate to the hospital network,  you need to submit a signed external entity agreement before your application can be considered in full.

7. As a hospital project, all research work conducted as part of this trial will be considered to be the property of the [hospital network], and any intellectual property generated in the conduct of this trial will therefore be owned by the hospital network.”

That’s right, they want the paperwork you already submitted to prove it’s OK to look at your paperwork despite the fact you don’t work there. They are also demanding that they own all your intellectual property because you work there (and you thought the one hand clapping thing was a doozy).

People pay good money for that sort of spiritual training. Time added: 1 month off your life expectancy.

5. Design research that requires you to follow-up data at 8 different sites

By now, the ethics runaround is lining up as more fun than the Uni bar on cheap drinks night, right? Well, hopefully you’ve also realised that after you’ve cleared ethics, you get to do a whole different application with the individual sites you’ll be interacting with to ensure that they have the necessary local requirements for your approved trial to get what it needs done on those sites. This is the research governance part of your approvals (the Site Specific Assessment if you’re using the online ethics portal).

The great thing about the SSA process, is that it’s like having 8 ethics committees all making up rules that suit themselves. Yep, 8 times the fun.

So you’ll get to try and liaise with the site where the local departmental director insists that to let your own research team go and do all the data collection, with no requests at all from them beyond access to the records, they must be listed as a co-investigator. Or there will be the place that insists that the research nurse collecting data has to be added to your study protocol as a co-investigator.

Better yet, there might be the site which insists you enter a contract as a consulting research group, nominate a local principal investigator, have the research nurse given an honorary position, find office space and a computer for that nurse on the actual site of the hospital, not remove any data, even de-identified data, to your central records for your research, set up a trust fund for them to deduct fees from and  allow them to charge you through 2 separate departments to get your data (yep, double charge). Oh, and they’ll charge you more than $3500 to look at your application.

Time added: 8 months. That’s right 8 months.

6. Do it all again

Finally, you’ll get there. You’ll jump through every hoop, adopt every revision, and come up with exactly what they want. Then you’ll need to make an amendment. Hey, you’re a pro now, it would be a pity not to show off your expertise. Time added: 2 months.

7. Admit the truth

Despite all the frustration that may occur with the process, we’re all mindful of how important an ethical review can be. Most researchers you will come into contact with are thoroughly decent and ethical people. Yet the history of research is full of stories of researchers behaving badly.

Really? How bad could it be? Well if we need an example, might as well go with one of the worst, the Tuskegee Syphilis experiment. There’s another summary here, but I’ll include the synopsis anyway, to drive the point home.

In 1932, the US Public Health Service, along with the Tuskegee Institute, commenced a study in almost 400 poor black men from Alabama. They were known by the researchers to have syphilis. They were looking to find out more about what the disease does to the body, how it was spread and how it killed. The men were told they were being treated for “bad blood”, and were given free medical exams, free meals and free burial insurance.

In 1947 penicillin became the standard cure for syphilis. It was withheld from the men in the study, who still didn’t know they had syphilis.

The horror of this trial was uncovered  in July 1972. 4 decades in total. 25 years after a cure was available. Women and children had been infected by the men. Many of the men had died. It was shut down immediately and after a bit of time the US Government did apologise. In 1997.

So there is a very important role for rigorous oversight of trials. The ethics committee is essentially the voice of the voiceless in the research space. They are there to think about all the risks that might be imposed by the research, however remote, to anyone participating.

In doing so, they redesigned my big whale of a study. I was really worried as to what they’d do to it too. The annoying thing is they made it better. They made me re-examine every element of the study and it ended up better than when I submitted it.

After all that effort, and all my annoyance they handed me back a different whale. And they didn’t even have the good grace to leave me with my moral superiority. Bastards.

PS If you have a story of your tangles with the ethics committee, I’d love to hear it. If you’d like a more direct insight into stuff I learned along the way, feel free to get in touch.