Friday, July 21, 2017

18 Months of the Children's Palliative Care Initiative in Bangladesh

I can't believe that it has been 2 years since my last post!  Life has been quite busy, with the birth of my second son and moving back to Canada.

In addition, in November 2015, I was approached by World Child Cancer to develop a project to specifically address the Palliative Care needs of children in Bangladesh!

This project, officially called the Children's Palliative Care Initiative in Bangladesh (CPCIB), has kept me busy for the past 18 months!  The project launched in January 2016, as a pilot project for 1 year. With the experiences that were gained in the first year, we have now been able to expand and further develop the CPCIB and the first phase of this project will run until 2020!

Here is an info-graphic which we prepared to share about the project and it's goals in the beginning.

Sunday, November 1, 2015

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.

Wednesday, October 21, 2015

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.

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 6th, 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 79th 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 9th, and Canada is 11th.

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 (31st) 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. 

Saturday, October 10, 2015

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).

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.

Wednesday, April 22, 2015

Tuesday, April 14, 2015

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!

Thursday, February 26, 2015

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.