Wednesday, June 25, 2014

Visit to Dhaka Medical College

As part of the World Child Cancer project, we are expanding the network of hospitals which treat children's cancer in Bangladesh.  I visited Dhaka Medical College Hospital with a team from World Child Cancer to see their facilities and meet with hospital administrators as part of these efforts.  At this hospital there is a children's cancer ward, with 17 beds as well as 4 newly opened paediatric palliative care beds in the palliative care unit!

Meeting with the director of Dhaka Medical College

On the ward

Spinal tap room.

The ward.  This hospital used to be barracks for the British Army!

Brand new palliative care unit, I'm very jealous.

Play room, staffed by a full time 'play lady'

Saturday, June 21, 2014

More about the Picnic

The Canadian Club in Dhaka decided to host this picnic to encourage all of the families who are treating their children to continue, to celebrate the children who have completed therapy and to recognize the contributions of the staff.

We had a barbecue lunch, followed by games, art activities and a clown.  At the end we had a small award ceremony where we thanked all of the hospital staff for their hard work and dedication to helping treat children with cancer. We were very fortunate to have Arif Hafiz, a local professional photographer, who donated his time and abilities to document the event.

I plan to print some of his photos of survivors which will be printed and displayed on the ward at the hospital with a small biography of each child.  These stories and photos will help to encourage families whose children are on treatment to continue, and reinforce the message that cancer is curable. There is still a huge misconception amongst the general public in Bangladesh that cancer is not curable in children.

Friday, June 20, 2014

World Child Cancer Children's Picnic

Today we hosted a picnic for all the families of children with cancer and the staff from the hospital.  There was a barbecue, games, art and a clown!  The kids had a great time.

Here are a few photos from the event.

Getting off the bus outside the Canadian Club. 

Playing on the tennis courts after the rain finished.

Yaun the clown was definitely the highlight!  He is a French clown visiting Dhaka.  I wish he could come visit the ward, but he's leaving in 2 days.

Friday, June 13, 2014

Play room progress

After 3 meeting with the Architect and his team, work has finally begun on the play room.

First there was a meeting with the Junior Architect to discuss the design. Then there was a meeting with the main architect to confirm the plan and negotiate the price.  During this meeting we agreed to a price and a time frame for completing the work. I specifically asked if he needed a cash advance, as this is quite common in Bangladesh, and I was told no.  Five days went by and no work had been done, despite a promise to start immediately. The next day the Junior Architect came to the hospital and told me that in order to start the work, he'll need an advance of $250! Why didn't you tell me this a week ago!  

Yesterday, when the painters finally arrived to start work, the space was still full of junk and furniture.  Furniture which I had been assured would be moved out of the space 2 days ago. The furniture did finally get moved and the painters got to work sanding and priming.

Now my next task, making sure that the glass windows and new sliding door get installed correctly.  Somehow I've become more than just the department's palliative care doctor, I am also construction supervisor!

I'm hoping that the play room will be done before the World Child Cancer team visiting from London arrive next week. At least the walls will be painted!

The play room with the furniture moved out.  Walls are painted.  Now for the new door and windows.  The new door and wall will start from where the painter is standing and will serve to enclose the space and allow it to be locked. The play room needs to be locked except when the play therapy volunteers are present, otherwise it will get dirty and all the toys will be lost. 

Ward Spring Cleaning Day

The BSMMU children's cancer ward has been extremely dirty since I arrived.  There are only 2 cleaning staff assigned for the entire floor of the hospital where the ward is located.  This floor contains not only my ward, but also an entire nephrology ward as well.  Needless to say the cleaners are not able to keep it clean.  It doesn't help that the cleaners tend to sleep most of the day and not do much anyways.  Karen (the nurse working with me) realized when she started working with the nurses, that without a cleaner ward, then nothing else really mattered.

Cancer and chemotherapy both suppress the immune system of a child with cancer, making them  highly susceptible to infection, so the dirty ward is a huge cause of mortality at BSMMU.  I started to wonder, ethically can we even give chemotherapy if we can't keep the children in a clean enough environment to make sure they survive the side effects of our treatment?

Karen has been investigating the cleaning situation for the past few months and looking at how we tackle this huge problem.  First she looked at the cleaning staff and what they were doing.  The answer was, not much work and the work they are doing was inadequate.  They are paid only $30/month and are expected to work 7 days per week; I would probably try to sleep instead of work if that was my salary!  The cleaning staff also don't have much equipment other than a few rags and no soap.

Today Karen organized a team of volunteers from the expat community to give the ward a spring cleaning!  All the patients were moved out into the hallway and we scrubbed the place down.  Then we brought them all back in.  Now Karen's job is to train the parents to keep it clean.  We also got some new mattresses which were sponsored by the Dhaka American Women's Association.
Mila, one of the two cleaning staff for the entire floor (31 beds in oncology and the same number in nephrology)!  She is a lovely hard worker once Karen started to show her what to do.

A volunteer scrubbing dirt out of the walls!

One of the toilets on the ward.

Another toilet on the ward

Lots of dirt to get rid of!

Head nurse showing the cleaners how to properly wring out a mop.  They have never seen a bucket with a wringer in it before, have always just used their hands to wring out the mop.

New bedside tables and tray tables sponsored by local friends.  This will help to keep all the stuff of the floor so that the cleaners can clean better.

Patient getting settled in the newly cleaned space, with new mattresses as well!

One of the ward cleaners, Taznaha, she was not very keen to help at first, but eventually Karen got her working!

New Mattress!

The old mattresses which were a big source of infection.  It also didn't help that they were never washed between patients.

Thursday, June 12, 2014

Palliative Care Discharge Kits are Here!

When a family in Bangladesh learns that their child's cancer is not curable, they will almost always want to take their child home. This is different from what happens in Canada, where families may choose either to stay with their child at a hospice for the end of their life. Often families choose to come to a hospice if their child is having a lot of pain or other symptoms, as being in the hospice often makes treating these symptoms a bit easier.  Specifically there is 24 hour nursing in the hospice and a physician will visit daily.

Unfortunately in Bangladesh, there is very limited access to hospices, and there are no hospice facilities outside of Dhaka, so home is really the only option for families for most families who I work with.  Unfortunately there is also no home care available. Given these limitations, I have been working to develop a palliative care discharge kit which gives families simple instructions for what to do as their child nears the end of his or her life.

The kit contains simple instructions in Bengali about which medications to give if the child has pain or other symptoms.  Due to the fact that 75% of the parents are illiterate, the medications are also colour coded. The kit contains about 10 doses of these emergency medications for pain and other symptoms. Having morphine in the kits is especially important as it is very difficult for families to get morphine. (It is also very difficult for me to get it for the kits, but that is another story).

The kit also contains instructions in Bengali which are intended for a local doctor. I explain to the family that when they reach their home, they should try to find a local physician who can provide care in their community.  The instructions for the local doctor explain the child's condition, why the medications have been prescribed and how to contact myself or Dr. Rumana should the local doctor have any questions.

You are probably thinking that this kit is not a very complicated idea, but this is Bangladesh, so it has taken 4 months to develop.

Here are a few examples of issues that came up along the way:

1. Deciding which medications to include was difficult.  There are similar kits used in other countries, but they are kept in the home and intended to be used by a trained palliative home care nurse under the instructions of a doctor. These kits usually contain many medications each intended to treat a specific symptom, but since my kit depends on parents recognizing the child's symptom and giving the correct medication it had to be much simpler.  It wasn't possible for parents to decide between too many medications without getting confused.  So the kit ended up having only 3 'emergency' medications:
-tylenol for fever or mild pain
-morphine for moderate or severe pain
-midazolam for anxiety, agitation, sleeplessness, restlessness or basically any other symptom

I seems almost too basic, but my experience is that with any more medications the parents get very confused about which one to give when.

2. Local doctor instructions: Initially these instructions stated that the child could not be cured, but feedback from physicians at my hospital revealed that if the local doctor was told this, then he or she would refuse to see the patient and simply tell them to go home to die.  So the local doctor instructions no longer mention this fact. It seems counter-intuitive to me; as a doctor I would appreciate having all the information about my patient.  Often when the local doctor hears that the child has cancer, they will say that the problem is too complex and the family must take the child back to Dhaka to be seen by the specialists at my hospital.  I am not sure how exactly to address this issue short writing "don't send the patient back to Dhaka".

Follow up plans: After distributing the first 20 kits, I plan to do a follow up telephone survey to see how the kits were used.  Which medications did the family use?  Did they find a local doctor to help out?  Were the medications effective for the child's symptoms?

Here are some photographs of the newly assembled kits.

As far as I know, no one has done this is a developing country before, so I am keen to see how it works. This idea was developed working very closely with a local palliative care physician, Dr. Rumana and reviewed with other local physicians.

The first kit and the instructions! 
Kit with instructions