World hospice and palliative care day

Recently, we celebrated World Hospice and Palliative Care Day in Bangladesh.  This is an annual global event to highlight Palliative Care.  

Did you know that less than 98% of children who need palliative care in developing countries don't have access to it? 

There are 29 000 children in Bangladesh who don't get the need palliative care that they need every year. 

What this means for an individual child is that the strongest pain medication they might get is paracetamol, no morphine. In many cases no one ever tells them or their families that the child is dying. And when a child dies, there is no one to help the family cope with their grief. 

In Bangladesh, less than 1% of children get the specialized palliative care that they need at the end of their lives. It often means that a child is left alone with their fears and anxiety as no one tells the child what's happening. 

In Bangladesh, doctors often don't know how to explain to a family that their child is dying. The doctor may be nervous or unsure of how to have this discussion, because they've never been trained in how to communicate with families about serious illnesses.

I'm reminded of a 10 year old girl that I cared for last year.  I'll call her Yasmin.  When she came to the hospital, she had a very advanced cancer in her leg, and I knew that it wouldn't be possible to cure her. I was able to control her pain with morphine and to answer her questions and calm her fears.  

As she understood that she wasn't going to get better, she shared with us that she wanted to go home and be surrounded by her friends and family.  We were able to make this happen.  She went back to her village in the countryside.  She died surrounded by the love of all of her friends and family.  She didn't die in a hospital far from home, in pain, afraid and confused.

Research has shown that when children receive palliative care, the quality of life for them and their families is vastly improved. In fact, good quality palliative care, may even extend their life. 

The reality is the majority of doctors and nurses in Bangladesh never receive training in how to provide palliative care, they don't receive training in medical or nursing college and they don't receive training in their post-graduate training. With training, health care workers can be taught how to prescribe morphine safely for children, how to talk to children and families and how to support their emotional and spiritual needs. 

When a child is in contact with just one health care professional who is trained in the basics of palliative care, the child's pain is relieved, their emotional and spiritual needs are met and their families feel supported as they face the unimaginable. 

Here's a link to the eHospice article about the World Hospice Palliative Care Day Event which was held at BSMMU recently.

http://www.ehospice.com/internationalchildrens/ArticleView/tabid/10670/ArticleId/17243/language/en-GB/View.aspx

Quality of Death Report

Did you know that the Quality of Death Report was recently released?  The best place to die is the UK.  Canada can in at number 11.  Bangladesh was ranked 79th out of the 80 countries surveyed.

http://www.apcp.com.pt/uploads/2015-EIU-Quality-of-Death-Index-Oct-6-FINAL.pdf

Here are the details: (From a recent editorial which I wrote on the subject)

The recent 2015 Quality of Death Index, published by the Economist Intelligence Unit, released on October 6^th, describes the status of palliative care in 80 countries from around the world.

The Lien Foundation, a Singapore-based philanothropic organisation, commissioned the Quality of Death Index, based on in-depth research and interviews with local and international palliative care experts.

Palliative care is an approach that focuses on improving the quality of life for patients with life-threatening illness and their families. The goal of palliative care is to relieve physical, psychological and spiritual suffering.

The United Kingdom, where palliative care is well incorporated into the National Health Service, tops the ranking. Additionally, the UK demonstrates key measures which are instrumental in providing high quality and accessible palliative care, including comprehensive national policies, a strong hospice movement and extensive community involvement on the issue.

The report ranked Bangladesh in 79^th out of the 80 countries surveyed, noting that palliative care remains an “unresolved hurdle” for the country’s public health system. Indeed many significant hurdles are present at this time in the development of palliative care services in Bangladesh.

The report demonstrates that, in general, income is closely correlated with high quality palliative care. High-income countries dominate the top 20 positions in the ranking. Australia and New Zealand rank second and third, the US is 9^th, and Canada is 11^th.

There are notable exceptions to this correlation, with several less developed nations demonstrating that integrating palliative care into the public health care system is possible and indeed a vital component of basic health care. Specifically, the report highlights the efforts in the Indian state of Kerala and Panama (31^st) where innovative efforts have lead to the incorporated of palliative care into primary health care.

Palliative care can be a very cost effective form of health care. Palliative care can be delivered in homes and health centres, in addition to hospitals and hospices. Palliative care is most successful when it is initiated early in the course of illness, and early palliative care reduces unnecessary hospitalizations. Additionally, early palliative care has been shown to improve the quality of life for patients.

Recently, in collaboration with the National Institution of Population Research and Training (NIPORT), the Centre for Palliative Care at Bangabandhu Shiekh Mujib Medical University (BSMMU) completed an Assessment of Palliative Care in Bangladesh.  An estimated 600 000 patients in Bangladesh require palliative care any point in time. If family members, who often require psychological, social and spiritual support, are included, then the number of individuals who need palliative care may be as high as 2 million (20 lakh).

Globally, children suffer disproportionately from a lack of access to palliative care. The majority of low and middle-income countries, where 98% of the world’s children required palliative care reside, have very limited palliative care services for children. Unfortunately, the situation in Bangladesh similar, with very few children having access to the palliative care they require.

A lack of training and awareness of palliative care are major barriers to the provision of palliative care in Bangladesh. Education of physicians and nurses will be vital to improving local palliative care services.  Palliative care must be incorporated into the training curricula for all new health care professionals from primary health care workers in rural areas, to specialist physicians in Dhaka.

Palliative care is not only for patients with cancer. It is also required for a wide range of chronic and life-threatening diseases, including heart disease, chronic lung diseases, renal disease, diabetes, dementia, and other incurable and serious conditions. In Bangladesh, the majority of deaths are now due to non-communicable diseases (NCD). When developing National Policies for the management of these conditions, palliative care must be incorporated. Palliative care will not only relieve suffering and improve the quality of life of individuals with these conditions, it will also be instrumental providing cost-effective care and reducing unnecessary health expenditures. Frequently, patients with advanced cancer spend large sums of money on unnecessary treatments, which do nothing prolong the duration or improve the quality of life, and instead lead to significant financial suffering for families.

Pain management is an important component of palliative care. Pain is one of the most frequent and troubling symptoms experienced by patients with life-threatening conditions. The World Health Organization (WHO) estimates that 80% of patients with cancer will experience moderate or severe pain at the end of their life.  Opioids pain medications, such as morphine, are essential for the treatment of pain in many palliative care patients. Morphine is safe and effective for the treatment of pain and patients who require morphine for pain do not become addicted.

The WHO has included morphine and several other opioids on its list of Essential Medications. In the past several years, progress has been made in Bangladesh to ensuring that all patients who need these medications will have access to them.  Local production of morphine started in 2007, and there are presently 3 local pharmaceutical companies who are manufacturing morphine.

There are still substantial barriers to ensuring appropriate pain management in Bangladesh. Many physicians are unaware of that morphine is available locally, or are hesitant to prescribe opioids as they incorrectly fear that patients will become addicted.

Public and patient misconceptions about the safety of morphine compound the issues facing physicians. Patients are often unaware that opioids are a safe and effective option to treat their pain. 

Although there are many challenges for palliative care in Bangladesh, even the longest and most difficult journeys beginning with a single step. So we have taken our first steps, and the future holds much promise for the further development of palliative care in this country. 

Cancer as a neglected Disease

Several months ago, I was interviewed by Jocalyn Clark, who works at ICDDR,B (International Diarrheal Disease Research Institute, Bangladesh) about childhood cancer in Bangladesh.  Here's a link to the article which she published on the BMJ (British Medical Journal).

http://blogs.bmj.com/bmj/2015/03/05/where-cancer-is-a-neglected-disease/

There are an estimated 7000-9000 cases of childhood cancer occurring annually in Bangladesh, but less than 10% of these children are seen by a specialist. Without access to a childhood cancer specialist, a child with cancer does not have any chance of cure.  The treatments for acute lymphoblatic leukemia, the most common type of childhood cancer in Bangladesh and globally, are relatively simple and inexpensive.  The majority of children diagnosed with cancer in Bangladesh could be given treatment aimed at cure, if these children were seen and diagnosed by a childhood cancer specialist.

Sadly, the majority of children with cancer are dying without access to potentially curative treatment.  Lack of awareness among the general public, that cancer is curable, as well as among health care providers means that most children are discouraged from considering treatment. Primary health care providers or those outside Dhaka, at district hospitals, are unaware that childhood cancer is curable, and often tell parents that there is no hope of curing the child.

The World Child Cancer Twinning Project in Bangladesh, is focussed on providing these health care workers with improved training to ensure that they understand how to recognize and then refer children with suspected malignancies.

eHospice Article

Here's a link to a recent eHospice Article about the progress on getting morphine in Bangladesh!

http://www.ehospice.com/internationalchildrens/ArticleView/tabid/10670/ArticleId/14731/language/en-GB/View.aspx

More Progress

I've been working in Bangladesh for a year and a half.  When I first arrived, it was impossible to prescribe morphine for children here.  Then I started being able to prescribe sustained release tablets, but these tablets were only available in one dose, which was quite large, making it very difficult to give doses which are appropriate for kids.  These weren't available at my hospital, so the patient would have to travel across the city to another hospital to actually get the tablets.

Last year, Unimed (a local pharmaceutical company) started making rapid acting tablets, these are the type of morphine which are supposed to be used when a patient is prescribed morphine for the first time.  This was a step in the right direction, but still the tablets were only available in one strength (10mg) which meant that it I was always cutting the tablets in half.  In really small kids, even half a tablet was too large of a dose.

Finally in the past few weeks, oral morphine syrup has started to be available.  This is perfect for children.  I can easily adjust the dose to a child's weight.  Yesterday, I was able to provide pain relief for a small baby, who was only 10kg.  It would have been impossible to treat this little boy's pain without morphine syrup.

Last Thursday, while I was working on the ward, several boxes full of morphine arrived from Unimed.  This morphine will be kept in the ward dispensary where we can quickly dispense it to children who are having pain.  If children are going home, we can send them home with enough for a couple of weeks and then they can easily come back to get more.

It's a big step towards making sure that kids with pain get treatment.

Big smile on my face, morphine syrup is finally here!

One of several boxes that was delivered last week!

Moving Forward

Sometimes the progress that I make at BSMMU is so slow that I almost don't feel like you're moving forward. Today I looked back and realized how far we've come.

I was updating a friend in Canada about how things are going on the ward. She was asking about how I was doing with getting access to morphine to patients who really need it.

You'll recall that when I first started working at BSMMU, there was no morphine available on the ward.  In fact the only way to get morphine was to send the patient's father or mother all the way to Dhanmondhi to Gonoshotu Hospital where it was possible to purchase G-Morphine tablets, a considerable distance from BSMMU. As you can imagine, this took hours or several days!  If the parents didn't get there before 2pm, then the pharmacy would be closed and they'd have to return the next day. If a child developed pain in the night, then there wasn't anything that we could do to help them until the next morning.

Not only this, but the type of morphine which was available was G-Morphine which is a long acting form of morphine, it lasts 12 hours instead of the usual 4 hours.  This may seem like it would be beneficial, but it makes it very difficult to adjust the patient's dose quickly as you can only give one dose every 12 hours.  Thirdly, the pills only came in one strength, which was too large for most kids, so we'd be trying to cut the pills in half or quarter, which wasn't easy.  There wasn't a liquid form available, so it was difficult to give the medication to small kids.

Now, the situation is much improved; morphine is available on the children's cancer ward at BSMMU.  The department purchases it directly from the drug manufacturer and then we provide it to patients free of cost!  Now I can give morphine to my patients within 5 minutes! This makes a big difference for getting kids adequate pain control when they have cancer.

Secondly, the rapid formulation of morphine is now available.  This is the type that lasts 4 hours, making it much more useful as I am able to safely increase the dose more rapidly in situations where a child has a lot of pain.

Overall these 2 changes: having morphine available from the medicine dispensary on the cancer ward and having the "regular" form of morphine have made a huge difference in ensuring that children who are in pain get the relief that they need.

Of course, this doesn't solve the problem for all the other children's cancer wards in Bangladesh, but it's a step towards our goal of ensuring safe and effective pain control is part of the care of all children with cancer in Bangladesh.

Rickshaw Relay!

Today the staff and families of the Canadian High Commission in Dhaka hosted the 3rd Annual Rickshaw Relay. This is a really fun event with 24 teams competing in cycle rickshaw races to raise money for charity.  This year, along with the Acid Survivors Foundation, World Child Cancer was chosen to be one of the charities which would receive some of the money raised.

The races take place on the main road in front of the Canadian High Commission. In fact they close to road for the morning for the race!  The event was a huge success with teams competing not only for first prize but also for best costume.  There was a team dressed as babies, Harlem Globetrotters and the winning team of Smurfs!

The were several cancer survivors who attended as well as staff from BSMMU children's cancer ward.

Thanks to all the volunteers who helped out with the event!

Dr. Anna and Nurse Godfrey (and his wife) volunteering to provide first aid for the event.  A few minor scrapes were the worst injury, although Dr. Anna had nightmares of last year's event where are rickshaw careened into the barbed-wire covered median of the road!  Rickshaws are harder to steer than they look!

Elias enjoying the event with Nurse Rafaya's husband.

Thrilled to have Arayan and his parents present.  He's completely cured from kidney cancer!

Some of the nurses and volunteers from Dhaka Kids with Cancer.

Barna with her son, Barno.  She is one of the hospital data managers.  Collecting information about all of the patients is vital to improving care.

The new Canadian High Commissioner to Bangladesh and his wife, welcome to Dhaka! He was previously the ambassador to Cameroon.

Lunch time BBQ after the races.  Shabana (second from the left) with her two sons.  She works on the ward, as an assistant.  Her older son had leukemia 8 years ago and now he's cured!

World Cancer Day 2015

Today is World Cancer Day.  A day to celebrate all the survivors of cancer and highlight that cancer is curable. This year's slogan "Not beyond us" highlights that cancer curable even in developing countries.

The nurses from the cancer ward.

Prof. Afiqul leading the march!

We organized a rally at BSMMU to raise awareness.  Here are some photos from the event.

Doctors assemble for the rally.

Malnutrition and ICDDR,B

Icddr,b is the International Centre for Diarrheal Diseases Research, Bangladesh.  It is a research hospital funded by Canadian Development funding as well as funding other countries, including Australia, the UK and Sweden.  The hospital has a clinical component where they treat people with diarrhea using a low cost, low tech approach, which has proven to be extremely effective.  They also treat children with malnutrition using a similar approach.  The hospital also does a lot of research about diarrhea, it's treatment and more. Check out their website for more details. http://www.icddrb.org/

Mari, Debbie and I visited icddr,b last week to learn more about how they treat malnutrition since the rate of moderate to severe malnutrition on the children's cancer ward is around 40%.  We talked with several physicians and the head nutritionist.  The mainstay of treatment is giving high energy foods to the children, but to keep costs down, they make these themselves in the hospital kitchen.

Specifically they prepare a milk powder-based formula which is nutritionally complete and can be used when children arrive at the hospital with severe malnutrition. We tasted the formula, and I can honestly say that it's quite tasty!  Basically it tastes like sugary milk, yum! They shared the recipe for this milk with us and we've started to provide it for kids on the cancer ward who are severely malnourished.

The cost per litre is around 30 taka (50 cents Canadian), so it's very affordable, much more so than the commercial formulas which are typically used.

Secondly, icddr,b teaches the mothers to prepare a healthy dish called Khichuri which can be prepared at home and has appropriate amounts of fat, protein and carbohydrates to ensure that the child gets all the nutrients that he or she needs.

Khichuri is a common food in Bangladesh, so it's something that all the mothers are familiar with already.  It's basically rice, lentils, oil and some veggies all cooked together.

Yummy khichuri.

The key is that at icddr,b they've improved the recipe so that it contains more oil and more lentils, making it much healthier.  Again the cost per kilogram is around 50 cents Canadian, so very affordable.  The mothers are encouraged to make this and feed it to all of their children, not just the one who was malnourished, to prevent the other kids in the family from becoming malnourished.

We also tasted the khichuri from icddr,b's kitchen and I really liked it.  Mari has been busy preparing this at our house and then teaching some of the mothers on the cancer ward how to prepare it.

There are lots of barriers for us on the cancer ward, as the is no way to get the hospital kitchen at BSMMU to make something new.  And it wouldn't be clean enough even if they did make it!  So we're stuck trying to figure out how to make it on the ward.  Right now we're teaching each mother individually to make the khichuri or milk formula in her rice cooker.  All of the mothers have a rice cooker at the bedside which they use to prepare food for their child.  The food that the hospital provides is not very good and is perceived as not clean enough to feed to a child with cancer.

The kitchens at ICDDR,B.

More of the kitchens.

Parents determined to see their child cured.

Many of the families at BSMMU come from extremely limited financial circumstances.  These are families who struggle to afford food and shelter at the best of times.  Having a child with cancer is very expensive for them; according to research done in our department, by the time that their child is diagnosed with cancer, they've already visited an average of 3-4 doctors, paid for many tests, and they've travelled from their village to get seen in Dhaka, often full day's journey.  Additionally there's the loss of wages if the father (generally the family wage earner) accompanies the mother and child to Dhaka and cost of food and accommodation.  In spite of all of this they preservere and somehow find a way to pay for their child's treatments.

Making music in the playroom! 

Debbie has spent time each day on the ward bringing happiness to kids admitted to the ward.

Watching the Meena videos on tablets donated by symphony 

This little guy is doing much better and he's much bigger than the last time I saw him 6 months ago!

Another little girl who's looking a lot better than the last time I saw her!

This mom is very dedicated to her son's treatment, she doesn't have much money but she's determined to get him the treatment he needs.  She works in a garment factory.

Pictograms for medication administration

How do you explain to someone who is illiterate when they need to take medications?  How about if there are 5 medications that they have to take?

I have joined with the pharmacy team from the Children's Hospital in Ottawa (CHEO) to develop and test pictograms to help patients understand how to take their medications.

Take 2 pills twice per day.

Take 5ml twice per day

Take morphine 1/2 tablet twice per day, when having pain 

Take 5ml every 4 hours

Tylenol: take for medium pain or fever

Welcome Back!

After almost 5 months in Canada, I'm back in Bangladesh.  Returning to the hospital was great!  The staff were happy to see me, especially the nurses who are keen to show off their improved English skills.  As part of the World Child Cancer funding we are able to give the nurses English lessons.  The lessons are important as many of the resources for pediatric oncology nursing that they need to access are in English.  Many of them have improved dramatically and are no longer shy to speak with me!

I am thrilled to have several visitors from Canada who are going to be working with me for the next few months.  Debbie is a nurse who I worked with in Canada, she brings 27 years of nursing experience to the ward. She'll be working with the nurses to continue to improve their practice.  She'll also be spending some time with the kids in the playroom.

Mari is a nutritionist and Masters in Public Health candidate from the University of Toronto who is doing a 3 month placement on the ward as part of her training.  She's working on nutrition related issues, assisting the doctors and nurses to improve the nutritional status of the children as more than half are moderately or severely malnourished.

The playroom is now open almost everyday as a dedicated team of volunteers comes to play with the children.  

Mari (left) and Debbie exploring the markets of Dhaka!