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Tuesday, November 13, 2018

Doing Global Health--not always the same as doing good

When I went to medical school over 30 years ago I dreamed of working in exotic places, plagued with poverty, where nothing was familiar and where I could be of use. It sounded deeply gratifying. I imagined that I might escape the small fiddly problems of my privileged life by trading them for large, worthy problems. I longed for the feeling of being sure that I was doing the right thing.

Not long after finishing my residency in internal medicine I took a trip to Thailand where, after being a tourist for several days, I visited a leprosy colony run by the Anglican church near the city of Chiang Mai, spending a week there watching and trying to help out. It was profoundly educational. Not only did I learn about the disease but also about all of the creative approaches the hospital there used to manage anything from chronic wounds to physical disability and patients' need to have meaningful work. The patients had illnesses that took years to heal, and they had workshops where they made beautiful wood boxes, prosthetic limbs and a variety of wheeled chairs or carts for getting around. Fishing line was sterilized to be used as suture material. Many things we throw away in the US were sterilized and re-used. Care was excellent and there was mutual respect between doctors and patients. That week was more important to my becoming a real doctor than many months I spent in medical school. My skills at that time were basic and I doubt I was of any real help, but I always hoped to go back when I had more time and more competence to offer.

Decades passed. In the spring of 2010 I began a series of trips to Haiti, Tanzania and South Sudan primarily to educate and be educated in medical programs of various descriptions. This included being involved in projects to do with sanitation and nutrition, teaching bedside ultrasound, helping out with research and occasionally providing direct care to patients. These projects have been wonderful in so many ways. They all have their own blog posts, scattered throughout whyisamericanhealthcaresoexpensive. They have also allowed me to make a myriad of mistakes that I can never undo and learn a great deal about how global health projects can have unexpected bad consequences.

There are a couple of root causes of the badness that comes of trying to do good. The first is ignorance. When we go to places that are exotic and unfamiliar we don't understand their culture or their diseases, how they deal with them, how systems that appear to be chaotic and just plain wrong are actually delicately balanced. We don't know their languages or customs. The second is resource inequity. We are rich and they are poor. This fact and the processes that caused it to be true and perpetuate it have created the need that draws us to help but also sets us up to fail.

We start with hurdles that stand between us and our goals. Sometimes we find that our important gizmos and doohickeys have been stolen because we don't understand the risks of where we stowed them. We then find that there are rules or regulations that govern what we intend to do which we were not aware of before leaving home. Solving those problems puts us in long lines and costs us unexpected fees and delays that were not part of our calculations. We offend people who we expected to work with due to misunderstandings. We find that despite the fact that we spend large amounts of money on our carefully designed plans, everyone seems to want something else, something we don't think we can provide. We become tired, frustrated and sometimes demoralized. Often we are resilient, though, and pop back, ready to face insoluble ethical quandaries.

We face ethical problems in the three main functions that we take on when we are doing global medicine: research, donations and volunteering.

Research:
Scientists in developed countries use the informed consent process as a way to protect our patients from possible harm. The idea is that we will explain what we are doing, why we are doing it, and what harms can arise from our research protocol. Our subjects will listen and judge for themselves if they are willing to take on the risk. This works fine if our subjects really understand what we are saying. In the US, with a population that generally shares our language and values, it's a pretty good strategy. In rural Africa, an informed consent form is nearly useless. A few years ago we did a research project in a small impoverished island in Tanzania. Our consent form informed one of our subjects that we would not be reimbursing her for parking. Since there were no parking lots in her village and she didn't own a car or even know anyone who owned a car, this was hard to understand. The form was pages long and had been painstakingly translated into Swahili, which she spoke far less fluently than her tribal language. She was also used to making decisions based on the judgment of a male leader or relative, so the very concept of giving consent was foreign to her. Our translators were hurried and most likely told her that if she wanted the mzungu (foreigner) to do this thing she should sign her name on the line. Explaining the whole thing would probably have taken an hour or more.

We also do research into techniques or treatments which are impractical or unnecessary. My group researched using ultrasound to diagnose malaria. Although it was definitely interesting to look at the ultrasound findings in patients with malaria, there is a perfectly good fingerstick test for malaria widely available where we were which was much easier to do than an ultrasound. Patients might have seen us doing an ultrasound for malaria and then believed that their own doctors who did not use ultrasound for this were giving them substandard treatment. We may have been unintentionally undermining perfectly adequate care. In helping us with our research, physicians who normally saw 100 patients in a day were slowed by helping us, leaving their patients in the lurch.

These are only our well-meaning mistakes. Sometimes research projects are truly harmful, offering treatments that have unacceptable side effects or comparing active drugs to placebo thus denying sick patients access to proven therapy. Well publicized harms caused by research projects have soured many African countries on any research which involves human subjects.

If we avoid all of these errors, we still take our data home for processing and submission and don't necessarily inform our subjects or local collaborators of the results. We take (from a poor country) and don't give back.

Donations:
I have enjoyed donating medical goods of various description when I travel, but I'm not entirely sure it was the right thing to do. Often we donate what we have, which has for some reason ended up un-used in our hospitals. I've seen specialized bone suture at a hospital in South Sudan, which had taken up space in a transport plane to get all that way so was by no means free. It was completely useless, as were boxes of plastic vaginal specula in a place where speculum exams were almost never done and where metal ones which could be sterilized and re-used were much more useful. We are often asked to donate ultrasound machines, but when we do, the machines are not under warranty and the companies that make them have no obligation to fix them should they fail. The machines we give are often far more expensive than the models African hospitals would normally buy from China and have unfamiliar buttons and knobs. If they had the money we spend on a machine to donate, they could buy several ultrasound machines. When we donate machines, the health authorities don't know which hospitals have functional ultrasound machines and which do not. Our good intentions may be slowing the development of sustainable local health systems.

Often when we donate some piece of equipment we do so with the agreement that the receiving hospital will use it free of charge to patients. This obliges the recipient to budget time to a procedure that gives them no profit. The providers may decide to charge for the procedure after we are gone, limiting its use to those who can afford it. Either of these arrangements can take time away from other obligations.

Volunteering:
Potentially the greatest gift of all that we can give in ourselves. As doctors or nurses we have trained for years in our fields and have added wisdom from our years of practice. Most of the countries where we go to volunteer don't have nearly enough skilled medical practitioners so you would think that they could use our help. Unfortunately it isn't quite that simple.

Often the places we go to volunteer are in disarray. This can be due to some horrendous natural disaster, but more often is caused or exacerbated by bad and corrupt leadership. As humanitarians we may need to help, but we must understand that our support may be propping up a bad regime or allowing a government which does have resources to shirk responsibility for creating a functional health care system.  In less catastrophic times our help may be competing with a new and fragile homegrown capability and may cause it to fail. It seems benign to come to a place a provide free dental care, for instance, but in some of the places we serve there are trained dentists. If we come once or twice a year, patients will wait for us. We have fancier machines and don't charge for our services. Any potential local dentist will be wise to establish his or her practice in a place where volunteers don't visit.

Some projects have been categorized as "drop and run." Specialized surgeries may be unavailable in remote areas and it makes sense to try to deliver this care with a specialized team. This can, however, disrupt regular services if a project is set up to happen at a functioning hospital or clinic. Also there can be complications of our surgeries which fall on already overworked and not-specialty-trained local providers after we leave. Such projects work best if these issues are taken into consideration and if we focus on training local providers to do what we do.

Even training local doctors or nurses to provide specialty services can have unintended consequences. People trained to provide a technically difficult or much-needed procedure will be able to find a higher paying job in a different area, maybe a place that has less need and so is less stressful. Training is a gift to the provider but may place an intolerable strain on the clinic that they leave behind. In Tanzania we introduced a clinical officer with a busy obstetrics practice to ultrasound. He easily learned basic obstetrical ultrasound allowing him to improve his care of mothers and babies. He fell in love with ultrasound, though, and I believe he left the over-stretched health center to pursue a career in radiology.

Working in resource poor communities can be an opportunity to do things that we would never get to do in our own settings. Medical students have found themselves delivering babies or taking the lead in performing some procedure with which they have little familiarity. I do many more procedures in Africa than I do at home, making me more capable when I get back but potentially putting African patients at risk from my lack of expertise. We do these things because we are convinced that we are "better than nothing." Sometimes we are, but sometimes we do things that would much better have been left undone. When we make catastrophic errors, not only do we risk patients' lives but we undermine the trust of the communities we are trying to serve.

And we are so expensive. It costs about $2000 for me to fly in and out of Juba, South Sudan. The small plane that will be chartered to take me to the village will cost someone a fortune, but will also transport supplies. Still, I am part of that cargo and I add a cost. While in Juba I will stay in a safe hotel which will cost $100 a night and there will be a capable person assigned to me to make sure I don't die, since robberies and carjacking are common. If I do get robbed or injured, other costs will pile up quickly. Is there a better way to use those resources?

So am I saying that we just shouldn't go?
No, not at all. There are many good reasons for healthcare providers from wealthy countries to offer their services to places and people in need. We must do research to find out what works and what does not in resource poor countries where diseases and problems are different from our own. Doing global health projects creates bonds of caring and makes us into better people. The vast majority of global health projects succeed in building compassion, empathy and perspective. That, in itself, probably achieves far reaching benefits. It's just that we should pay attention to the details and try to follow Hippocrates' advice to "do no harm." I emphasize "try." It is not possible to do absolutely no harm, but if we're careful we can minimize it.

Advice:

  1. Find out about a trip or project before committing to go. Ask lots of questions and make sure you are satisfied with the answers.
  2. Partner with local people. Listen to them. Ask them about etiquette and politics. Find out what they think about the impacts of a project.
  3. Don't be too set on your own agenda. After all of your good planning ahead of time, you may still find out that what you had planned to do is wrong or needs tweaking.
  4. Find out as much as you can about the health systems already in place in the area you plan to visit.
  5. Step out of your doctor suit and think about social justice. Figure out how you can contribute to the health of the community you serve rather than just your patients.
  6. Forgive yourself for your inevitable mistakes and try not to take yourself too seriously. 


Saturday, November 10, 2018

Lewy body dementia and a farewell to my father

When I finished my training I was taught that the vast majority of dementia was Alzheimer's disease, with occasional cases of multi-infarct dementia as well as odd syndromes such as Kreutzfeld-Jacob disease and genetic, traumatic, toxic and tumor related syndromes. Parkinson's disease, we were taught, caused a tremor and freezing up of a person's movements and only very rarely was associated with any kind of memory loss.

These teachings helped us modern doctors leave behind terms such as "senility" or "hardening of the arteries" to explain cognitive loss. We still had no useful tools to change the course of dementia, but we were more scientific in our description of it.

In the last several years, however, neurologists have determined that there is a very common dementia that is associated with Parkinson's disease. Lewy body disease or Lewy body dementia was a condition that I had been taught was not only uncommon but only accurately diagnosed at autopsy or with a brain biopsy. It appears, now, that it is quite common, comprising up to 30% of cases of dementia. It is more common in men than in women, like Parkinson's disease but not like Alzheimer's disease and is more common in people who have higher educational attainment. It is characterized by collections of protein known as Lewy bodies that are found throughout the cerebral cortex, rather than just in the movement centers of the midbrain, as in Parkinson's disease.

There are some medical tests that will help to diagnose Lewy body disease, but they are not commonly performed. It is most commonly diagnosed by the identifying 2 of 4 common clinical features. These are:

  1. Fluctuating cognition with varying levels of consciousness and alertness. They will fall deeply asleep and be unarousable or be very slow and confused, lasting hours sometimes, then improve to a more normal baseline, laughing and participating in conversations. Family will sometimes think they have had a stroke or a seizure.
  2. Visual hallucinations. These may be quite detailed.
  3. REM sleep disorder. Patients will often talk in their sleep or do complex movements, often getting up and walking or performing complex behaviors. This can be disturbing and even dangerous to a bed partner.
  4. Motor features of Parkinson's, including pill rolling tremor, slow movements and rigidity. These features almost always follow the development of memory loss.

Patients have other clinical features such as depression, anxiety, apathy and loss of executive function (unable to clean a closet, sort and pay bills or put together a photo album.) They often have autonomic dysfunction, with fainting spells due to drop in blood pressure or inability to tolerate changes in temperature. They become unstable in their walking or standing and fall frequently. They have urinary incontinence. They have delusions that are detailed and hard to shake.

My father had this and I didn't recognize it until about 3 months before his death. He was a very smart man, having graduated in physics from Caltech and then worked with early computers and was an important part of the space program. He worked on developing electric cars and wind power and studied the feasibility of oil shale and tar sands (not feasible and not efficient, he concluded.) He brought a supercomputer to the island of Maui and helped jump start their technology industry. He was funny and engaging and had a knack for encouraging others by being a springboard for their ideas. He was the most compelling conversationalist I have ever known and played a mean game of scrabble.

When he lost his wife to cancer 12 years ago he began to notice some disturbing memory failures. He put those down to the stresses of home hospice and the depression that followed her death. He was capable with his laptop computer and enjoyed the early handheld computing devices, but when he got his first smartphone, the technology became more difficult for him to learn. He could use email, but forgot how it worked and never learned to access it with his iPhone. He took on the position of board president with an academic organization and wasn't able to keep up with what he needed to do. He resigned and felt terrible about that. He tried to take blood pressure medication but would pass out unexpectedly so stopped it. He kept all of his mail and couldn't figure out how to file it, feeling ashamed about the state of his desk. He flailed and talked in his sleep so much that his wife had to go to bed elsewhere. He would wake up at 4 in the morning, inconsolably sure that he needed to catch a plane or teach a class.

He fell frequently and when he walked or stood, would lean to one side, unaware that he was doing it. It was nerve wracking to walk with him because he refused to take an arm and never learned to use a walker or cane. He slept more, often while sitting up, and had periods of unresponsiveness that were alarming. His falls were not minor and he gashed his face and ripped the skin on his arms, broke his hand and hit his head hard enough to spend an agitated night in the hospital. His writing became small, shaky and cramped.

It was clear he had dementia and that it wasn't a normal kind. He saw a neurologist who thought he might have Parkinson's disease and a wonderful gerontologist who diagnosed Alzheimer's disease. His wife, who had been attending a dementia support group, had heard about how common Lewy body dementia was and suggested it might be that. I read the most recent literature and decided she was right. Not only did he have it, so had many of my patients over the years who I had thought had Alzheimer's disease.

The fluctuations. The falls. The detailed hallucinations and delusions. The executive dysfunction. It isn't subtle how different it is from Alzheimer's disease. These are the people who come into the emergency department frequently when they are clearly worse than normal but improve overnight and return home, even though we think that's a bad idea. They do fine until they fluctuate again and then are back. These are the difficult to handle patients with the mean delusions who drive their families or spouses nuts but are unmanageable in nursing homes. If Alzheimer's disease were vanilla ice cream, Lewy body dementia would be rocky road, with real rocks.

My father was a sweet guy but this disease made him critical, unkind and selfish. But only sometimes. Only when we were so deliberately stupid that we didn't understand that his reputation would be ruined if he didn't get to the airport or to the lecture he was supposed to be giving. Only if we tried to help him walk when he could clearly do it better without our pushing him off balance. Only when he woke up scared and didn't understand what was going on. At other times he was kind and appreciative and full of sweetness, humor and wisdom that he could no longer put express with words.

It was possible for him to stay at home with his wife for a long time with the help of caregivers. Eventually, however, the combination of impulsiveness, weakness and sleep disturbance made even 24 hour caregiver support inadequate and he had to be moved to a memory care center. The facilit was really wonderful, catering to the dotty, delirious and demented, many of them with what appeared to be Lewy body dementia. He perked up briefly after moving, but then began to sleep more, sitting up in his wheelchair. He still had up times, explaining the chemical properties of tungsten, listening to a talk I needed to practice and offering good questions. He became weaker, unable to hold a cup or a fork, barely able to lift a cookie. Eventually he didn't wake up at all and two days later died peacefully, in the care of hospice.

Since his diagnosis, I have been much more aware of those demented people who don't have Alzheimer's disease. It helps to know, so we don't compare them unfavorably. They aren't just difficult people with dementia, they are regular people with difficult dementia.

Robin Williams, the gifted actor and comedian, developed a set of disturbing symptoms in the last years of his life that were unexplained but progressive and horrible. He said goodnight to his wife one evening (she slept in a separate room because of his sleep behaviors), went to his bedroom and hung himself. An autopsy showed severe Lewy body dementia. She wrote a letter to the journal Neurology detailing their medical odyssey. It is heartbreaking to read.

We have no useful treatments for Lewy body dementia. Sometimes benzodiazepines help a bit with the sleep disorder, but my experience was that they did nothing. Anti-psychotic medication is not helpful and often can worsen the symptoms significantly. Parkinson's medication can help with the rigidity and tremor, but my experience was that, by the time that was prominent it was more helpful for my father not to have the ability to act out his impulsivity. A wheelchair was much safer. Cholinesterase inhibitors, used in Alzheimer's disease, are recommended but don't help much and can cause sleep problems, nausea and drooling.

I will miss my father. I will think about his voice, his conversation, his smile, his love of math and his scientific contributions. I will remember his smell, his wispy white hair and the way he loved to have his back scratched hard. I will not miss his last 6 months, though, and I resent those nasty Lewy bodies that infested his wonderful brain.