Dying

Today has been a heavy day. On of my patients died. This isn’t the first time since I have been here – many people come to hospital only once their condition is so critical that there is little that can be done to save them – but this person was young, only 20. And although she was very very sick, her death wasn’t expected (by me, at any rate.) We (my Ugandan doctor colleagues, and the nursing staff) spent several hours trying to resuscitate her, but our efforts made no difference, and in the afternoon, she took her final quiet breath.

 

What struck me was how public death is here. In our open ward without curtains, all the other patients and their caretakers could see our young lady in extremis. As we were trying to help her, the ward was quiet whilst people watched. The patient had her relative with her to care for her personal needs. The relative’s suffering and sadness was also public, she cried quietly and with dignity in full view of the ward.

 

The moments around her death were really moving and challenging for me. Her relatives came and prayed around her bed. Others on the ward joined in, the staff came and went, and carried out their duties whilst the mourning was ongoing. And then the carer packed up the small bag of belongings that had accompanied them both for the week they had spent on the ward. A thermos, a blanket. Not much else. The body was taken to the mortuary. A jumble of the deepest feelings and the mundane, and also an awareness of how little material stuff accompanies most people’s lives in this region.

 

Life and its ending are so very much part of present experience here. Many adults know the feeling of loosing a child. Or more than one child. Explanations aren’t demanded as they might be in the UK. There seems to be an acceptance of the fact of death and a way that it is integrated into the experience of being alive that I am not used to. In the UK, so much of death and dying is hidden. When we know people are dying, we often withdraw. It is not a public phenomenon, and I feel somehow cut off from it for much of the time. Here, at least on the hospital wards, being alive feels a very delicate thing.

 

The spiritual dimension of life-and-death is ever present. Morning prayers at the hospital. The prayers said at the bedside. The ministry of others once someone has died. They set into relief the fragility of life. It seems obvious that we will call the chaplain to the ward when we have a dying patient, just as obvious as giving intravenous fluids.

img_20181102_084419248

Sunday

 

Sunday is my only day off in the week. To compensate, I am entitled to 5 days off in a row every month or so. So for now at least, I am working a six day a week. And the week has been full of new things to learn and has felt quite long.

 

I was delighted when Sunday came. I still woke at 7:15 when the lady came with the milk (pretty much straight from the cow, maybe watered down a little.) It is still quite dark here at 7 in the morning as the hills are high and the sun has to be high to break over the tops. For one day in the week we can wander around in our pyjamas, at least until showers are done. Showers are a palaver. We have a bucket which we fill using water heated in our kettle, and power with a little camping shower. It’s a bit chilly as we are in the rainy season and the floor of the bathroom (and the rest of the house as well) is concrete. It is fair to say that it is the low-light of the girl’s week.

 

We decided to go to the National Park at the edge of the village to do a short walk in the forest. The rules here are that you can only do a short walk unaccompanied. Because we are very near the border with Congo and because of the gorillas, any walks deeper in the forest have to be with an armed guard. Unfortunately, the park ranger told us that the short walk was ‘’not possible’’ today. Perhaps we would like to spend 70 dollars and take a guide instead? We politely declined and went home, a bit gloomy. Only to find our verandah and the surrounding trees full of red tail monkeys. What glorious creatures! They played on the car, lounging on the warm roof, looking at themselves in the wing mirrors, sliding down the front windscreen. Then when they had had enough, they swung from the electricity cables and into the trees. And then they spotted our open doorway and open windows and the ripe fruit inside…. The different animals really had different temperaments, some willing to come right up to our doorstep to take a fruit, others more wary. The red tails have white heart shaped noses and rusty red tails which they hold in beautiful question marks when they are on all fours. It is quite something to look straight into the eyes of another primate at such close quarters, and to almost see that it is thinking and planning.

 

img_20181104_140138025_hdr

 

After playing with monkeys, and then playing outside with the children around us, we decided to walk along the river just next to our house. The river comes out of the impenetrable forest about a mile away, and tumbles down in pools and small waterfalls. It is incredibly beautiful. The vegetation is so lush. Things grow and grow, tumbled one upon another, and on the vegetation are bugs and butterflies of such variety. Butterflies that are white with black underwings, others with markings like swirls of ice-cream, dragon flies, assassin bugs. We were caught out by the rain and took shelter under a tree with only a small umbrella to protect us from the deluge. The girls sang the Ugandan national anthem to keep their spirits up whilst people herded goats past us and looked with amusement at the huddle of damp English people who couldn’t cope with the rain. We had a fantastic walk, and on the way back, a group of Batwa ladies and assorted children joined us.

 

img_20181104_161656450_hdr

img-20181104-wa0014

img-20181104-wa0013

The Batwa are the traditional forest dwellers of the central African region whose lifestyle was one of hunting and gathering in the resource-rich forest. They were evicted from the forest when the forest was gazetted as a national park in the early 1990s. There are about 6000 in the region as a whole. They are of small stature. They suffer lots of discrimination and the hardships that accompanying displaced indigenous populations all over the world (alcoholism, lack of employment opportunities, generally poor educational attainment, lack of secure land tenure, even poorer health outcomes than their surrounding neighbours.) In fact, our hospital was started as a health clinic to meet the needs of the Batwa. Sadly now, the most lucrative income for the Batwa is to dance for the tourists. It feels sad and unjust and ironic that their income is at the beck and call of visitors who come to see the ‘’pristine wilderness’’ which was actually their home, their larder and their spiritual base.
I was walking with a feisty woman called Truth. Her English was pretty good – I presume from all her contact with tourists. She told me she has five children, but ‘’ I don’t want family planning, I  just want some more.’’ She wants seven children. She had her first when she was 15 and she was still at school. She completed primary only. She told me, ‘’ but now I am married.’’ Her husband is good to her, she says. She is 28.

img-20181104-wa0012

stabilisers off….

In a few days, our support system will change. Since we arrived, Zish has been here to look out for us. Zish is a GP from the UK, who spent a year here until September this year with his wife and his two young children. He has shown me ropes in the hospital, given limitless practical advice about essentials such as accessing the internet, and money. He has provided us with a car, and a house ready stocked with the puzzles, children’s books and lego left behind by his own children when they were here. We have been supremely fortunate. For me, the clinical calibration has been the most helpful. When is someone sick enough to need a lumbar puncture? What is the dose for ceftriaxone? What tests can we do in the lab? What is realistic to expect on the wards – can we expect observations on sick patients to be done every four hours?

We’ve also had Marian and Ceri as well. Marian is the RCGP’s lead on adolescent health. She has been coming to the hospital twice a year for the last couple of years to support the hospital’s project called USHAPE. USHAPE is a family planning training progamme based here in Bwindi, funded by the Margaret Pyke trust. USHAPE encourages a ‘whole institution approach’ to family planning. The idea that family planning is integrated into all parts of the hospital provision (so for example, ladies can’t be discharged from hospital without a check that their contraceptive needs are being met.) In this area, women have an average of 6 children, and on average, don’t want more than four. There is a very young average age of first pregnancy, and getting pregnant whilst still of school age puts both the new mum and the baby at significant future financial and social disadvantage. Hence the need for family planning. Anyway, Marian’s particular focus has been the development of Youth Friendly services in the hospital, something I hope to become involved in . But more of that later. Marian has been more than kind. She has listened, provided support, thoughtful reflection and child care (!) during our brief time together.

img_20181029_174816948

Ceri was the doctor from the UK doing my current role a few years ago. She stayed for two years and remains actively involved in the work of the hospital, through a UK charity she and other previous volunteers have set up called REACH Bwindi https://reachbwindi.com/blog/ She has also been here to support USHAPE. She has deeply established relationships with many of the staff and a strong and realistic understanding of how the hospital works. And she has been happy and generous in sharing those with me and a huge support also. And after all, it is all her fault that I am here. It was by finding her blog on the internet that I first knew about the  hospital.

Marian and Ceri will be leaving this week also. I’ve had gloomy moments, feeling overwhelmed about how I will cope with the clinical demands mostly, when it all still feels so new. But I have to learn to stand on my own two feet and I have really warmhearted and generous Ugandan colleagues to turn to for advice, and Brian and the girls at home…. Let’s see how this week goes!

Daily Routines and fistulas …

We have been in Bwindi for a week. What a full week (in fact, by the time of posting, I have been here a bit longer , but haven’t wanted to post without the hospital’s agreement.) Anyway…..

I am now getting to understand the pattern of the working day, so I thought I might describe what happens.

The day starts with morning prayers at 8 am. The staff all gather in the Out Patient waiting area, which is a covered outdoor area, and there is drumming and singing and preaching. Miss A and little Roo have been coming with me, and enjoy swaying to the music and clapping and trying to follow the words in the hymn book, in the local language, Rugika (pronounced ‘Ruchiga’) Morning prayers is followed by announcements to the whole team. This could be about visitors to the hospital, or meetings, or achievements of some of the staff. So far, it has been warm and sunny sitting outside with the sun on our faces and the swallows swinging in and out of the surrounding buildings, building their nests. After morning prayers, there are regular departmental meetings. On Monday, there is a clinical meeting, on Tuesday, an operations meeting for each department, on Wednesday the meeting is about quality improvement projects. Thursday is for reviewing maternal and perinatal deaths to look at processes and lessons to learn. Friday is a departmental teaching meeting, and Saturday is a Grand Round (that means the doctors go and see all the challenging or interesting cases currently in the hospital.) After the morning meeting comes work on the ward or other meetings until ‘break tea’ at 10:30. More of the same after break tea, a lunchbreak at 1ish, and work resumes in the afternoon until 5. Part of my time is to be spent doing clinical work, and part doing quality improvement. That means working with the hospital to support efforts to improve the services offered to the patients. More about that later.

I am assigned to the Adult in patient ward for my clinical time. I have yet to fully understand all the systems. This week, the ward has been very busy indeed as the hospital is having a ‘’Fistula camp.’’ This means that a group of visiting surgeons have arrived and is operating on ladies who have particular surgical problems, doing many cases very intensively over the course of a week. The surgeons and anaesthetists come from Switzerland and Germany, and also from Mbarara, a university town in the South of Uganda. The surgeons are assisted by the Ugandan Medical Officers here. The camp has been running for a week in October for seven years. It runs as a very smooth machine!

Fistula surgery is very important as the problems are so unpleasant and disabling. It is very specialist surgery, not readily available here, or if it is, it is at a cost that most people could never think of affording. A fistula is a connection between one part of the body and another, and in the case of the ladies on the ward, it usually forms between the bladder and the vagina. As a result, the bladder empties out of the vagina and these poor ladies suffer with a continuous and uncontrollable leak of urine. This of course has profound emotional and psychological consequences in addition to the physical effects. There are many causes of fistulae. Sometimes people are born with them, but in this context, the most common cause is problems during labour, when the baby is stuck and can’t be delivered, and the pressure of the baby cuts off the blood supply to the tissues in the mother’s pelvis, causing them to stick together and form the connection between them.

Ladies have come from far and wide to have the procedure. News of the surgical visitors has spread by word of mouth. In particular, I understand that there have been the efforts of a particular man whose wife underwent the surgery a few years ago, and was so grateful for the intervention on his wife, that he wanted other people to be able to access it too so spread the word far and wide.

No pictures of fistula surgery, but here is one of the view from the balcony of the admin block where I was sitting with my computer this afternoon.

img_20181024_163340800_hdr1

 

Marks out of 10

Marks out of 10

 

Today is Sunday. A week ago, we were leaving Abingdon in a taxi in the rain on our way to Heathrow. What a lot has happened in that week.

 

Whilst we had lunch today, I asked the girls for their marks out of 10 for the week. The overall was 7.

img_20181021_140817957
Sunday lunch (with the last of the cheese)

Here is their assessment.

 

Things that were 10 out of 10 were the bread at the guest house. It is soft and thick and lovely and not too sweet (unlike the shop bread we can get here.) Chicken (to eat) also gets 10 out of 10.

 

Meeting W and A also rates 10 out of 10. They are the children of the managers of the guest house which is attached to the hospital. They are 10 and 8 years old, and are home schooled in the morning, and play outside in the afternoons, climbing trees, making a tree house, fishing in the river, building a zip wire and a bike track. Miss A has joined them, and delights in the freedom and in running fast. Yesterday in the forest, they tried (unsuccessfully) to catch butterflies together with a length of old mosquito net as a butterfly net. Little Roo tries to keep up, and it tires her out!

 

Finding a chameleon was also a 10 out of 10. It was emerald green and just sitting on the track as I walked by, juddering backwards and forwards, and rolling its eyes around. We brought it home and it joined in card games and lego for the afternoon sitting on Miss A’s fingers, until we took pity on it and took it back to the wild. We placed it on a leaf, and it changed colour, one side brown with a yellow stripe, the other still green, but with a red stripe, as it camouflaged itself into the foliage and disappeared. According to miss, A, putting it back was a 1 out of 10.

img_20181018_140253425

Other low-lights of the week have been, having a bucket shower, rated about 3 out of 10 ( it would have been a 1 if the water was cold), and being sick after eating samosas on the first morning was probably 1 also.

 

img_20181021_111140458
Our shower, with some complicated arrangement to make it warm!

 

I’d say my own week comes in at a steady 8+. The welcome and conviviality have been superb, and Zishan, the GP preceding me, has been the best mentor, friend, guide, one could ever hope for.

Orientation and disorientation

I wrote this last week, on my second day in the hospital…. I’ve delayed posting it because I wanted to check that the hospital communications team were happy with me writing things about the hospital.

………………………

I am now ‘at work’ to Brian’s disappointment, as he wishes I would spend more time with the family before disappearing into the hospital. But I feel that we are here at the hospital’s generosity, and that it is courteous and respectful to start making a commitment to the hospital as soon as I can, and I also want to get to know the community we are becoming part of.

 

The hospital has an extensive orientation programme. I have not seen anything like it in any place in which I have worked before. It includes a list of departments and a list of issues to be covered through a visit to each department, and the name of the key person to contact for the information. It may well take me weeks to get through it all, but the idea is an excellent one. It means that everyone working in the hospital has an insight into its running from how the finances are organised, to how waste is disposed of, to what to do if a person dies, to how the community clinics work. I have to complete the orientation before I can really start working as a doctor in the team.

 

This morning, I visited the HIV department. HIV is prevalent here, 8.1% of the population are infected / affected (2012 data.) There is still considerable stigma attached. The clinical officer told me about all the regimens for giving antiretroviral drugs to HIV positive patients. Whereas when I worked in South Africa, antiretroviral drugs were not yet available, they are now much more readily so. In Uganda, the policy is to start treatment as soon as someone tests positive.

 

Whereas in the UK, HIV has taken the status of any other chronic disease, with an almost normal life expectancy, here it is another story. Lots of patients only present when their disease is very advanced, and they are showing the signs we associate with AIDS, that is, when their immune system is very compromised and they are unable to fight off infections that take hold in odd and complicated sort of ways. Even for those whose diagnosis is made sooner, there remain issues around adherence to treatment, to how to prevent mother-to-child transmission, and the relationship between HIV prevalence and the power dynamics between genders in a context where having multiple partners is very common. I learnt about the policies for testing, for changing drugs, for treating TB in those who have HIV  (TB and HIV co-exist very often.) The hospital runs support groups for those with HIV – seven groups in the district. It also has a very creative approach to recognising the broad impact of the diagnosis on those newly diagnosed. All new patients with HIV are given a care package that includes a jerrican for collecting water, water purification powders (drinking dirty water carries risks for anyone, but much more serious if you can’t fight the infections), contraceptives, a bed net to prevent Malaria and many more resources.

 

After spending a morning in the hospital, I came back home to spend time with the family. Our hospital colleagues and people around us are so friendly and welcoming, this is feels a happy place to be. On the other hand, there are so many things that leave me feeling disorientated. Whilst I am recognised by everyone in the hospital, I am still confused about who does what, and which names go with whom. I am doing lots of waiting. Waiting for people to be free, waiting for meetings in the hospital, and as I do, I see doors open and close, people coming in and out, and I don’t understand why, and I feel a bit ‘outside.’ I am sure this is a passing phase, the sort of thing that comes with being new anywhere.

”You know I said….”

Before we came to Uganda, Miss A had been worried. Her first concern was how she might make friends with children who didn’t speak her language.

Here’s a photo from this afternon

img_20181020_1741159081

 

 

Afterwards she said; ‘’ You know I said it would be difficult to be friends with children who don’t speak the same language as me. Well it isn’t. I had a really good time.’’

 

 

Afterwards she said; ‘’ You know I thought it would be difficult to be friend with children who don’t speak the same language as me. Well it isn’t. I had a really good time.’’