The ASHIC Palliative Care Unit (PCU) was started in 2006 sponsored by UICC and Sanofi-Aventis, under this MCM program. ASHIC takes the opportunity to offer its thanks to the UICC and Sanofi-Aventis steering committee for selecting this project.

Without the funding of EURO 60,000.00 from MCM, the ASHIC PCU project would have remained in cold storage for a longer period or possibly would never be implemented.

Before the start of the MCM program, ASHIC had no significant exposition to international funding and was inexperienced with regard to various problems, which were sometimes very frustrating. However, Geoff Thaxter (at that time Vice Chair of ICCCPO) was constantly guiding ASHIC through email and phone calls, on how to overcome the problems and manage the situations in difficult times. The ASHIC Foundation is extremely grateful to Geoff Thaxter for his support and encouragement, which has allowed ASHIC to bring the project to the present status.

How do we perceive Palliative Care?

Terminally ill patients who fail to respond to curative treatment go through a period of unrelenting pain and agony in their remaining days or months. Through pain and symptom management palliative care aims at making the last days of the patients as comfortable and painless as possible as well as providing moral and spiritual supports to their near ones.

It is needed by most children with cancer in Bangladesh

Of the estimated 6000 to 7000 cancer affected children per year in Bangladesh, a maximum of 10% gets hospital treatment. The survival rate of most of the patients who are treated in hospital, is very poor due to a host of factors like delayed diagnosis, financial difficulties, lack of front line professionals etc. There is no organized palliative care offered to the unfortunate children. As a result, there are many cancer affected children in terminal stages, those who pass their last days in extreme agony.

In the year 2000, we started a project, called “Shelter”. It is a 20 bed free accommodation near the Bangladesh Sheikh Mujib Medical University (BSMMU), the most recognized institution for paediatric oncology treatment in Bangladesh. So far, more than 170 children received the advantage of the “Shelter”. During their years long treatments these children had to come and stay in the Shelter many times. Thus we have specific data about them. According to our records only 19 children survived. Now, imagine their last days in a community where the family becomes isolated as their neighbors still believe that cancer is an infectious disease. With respect to this situation we felt that palliative care is a critical component for children with cancer in Bangladesh.

Setting up the Palliative Care Unit

The ASHIC Palliative Care Unit started in May 2006. It is a twelve bed all free facility (6 for patients and 6 for guardians), run by 4 doctors, 4 nurses, 4 social workers and 2 nurses aid plus a number of volunteers.

The facility is taking care of the terminally ill patients for a period of 5-10 days in first admission. During this period, while taking care of the child, parents are encouraged to participate with doctors and nurses in caring activities. Along with it, the social workers take the opportunity to counsel the parents on spiritual and other issues. This approach is taken in order to offer first hand training to parents on how to take care of the child while at home and to get them prepared for the worst. After such training, the patient and family are transported to their home.

Our social worker who accompanies the family organizes a local community gathering to inform them about the family and to motivate the community to support them in a situation where human support is more important then medical care.

After the children are settled at their homes, they are constantly monitored and supported by the PCU through phone calls and home visits.

Social workers are also regularly visiting the families in hospital for counseling the parents of the in-patient children in order to give an understanding of Palliative Care and role of the ASHIC PCU. So far, more than 2000 parents and relatives, in various hospitals were interacted in our counseling activity.

Training of doctors, nurses and social workers

A special group of the ASHIC Volunteer Corps (AVC) was organized in December 2006 to support the Foundation’s activities. Among these volunteers are five oncology specialists, who received training in palliative care abroad. To our knowledge, there are only twelve such specialists available throughout the country at present.

Oncologists from the Volunteer Corps organized training programs for the doctors, nurses and social workers in order to increase awareness on palliative care. In the past 18 months we have already done six workshops, five seminars, seven training programs. More than 1500 people have attended.

The activities are already making a difference

Initially we had very poor response from families, doctors and hospitals. From the start in May 2006 to May 2007 we had only 35 patients admitted in the PCU despite all our efforts. Whereas the intake of patients in the PCU from June to October 2007 (that is the last four months!) has dramatically increased. The total number of admitted patients (new and re-admissions) has crossed 144 to date.

*  The training for the parents appears to be effective for home care as families and patients at home are found to be comparatively better settled and content. As well as the communities appears to be more sympathetic and supportive.

* Parents/relatives of the deceased children come to the PCU to express their gratitude and many of them tell us their tales of gruesome experience, of their unsuccessful, often year long treatment in hospitals and their financial trauma. Most of the families praised the role of the PCU and regretted not having had the benefits for their gone away children earlier.

Hospital authorities are realizing the need of Palliative Care

The authorities of Bangladesh Sheikh Mujib Medical University who found it difficult to accept the concept of palliative care and were not extending support to our program - despite our long standing support service from the Shelter to children under treatment in BSMMU - has opened a palliative care unit in the hospital under the leadership of Prof. Dr. Nizamuddin in October 2007. Dr. Nizamuddin in his opening speech frankly admitted that doctors in Bangladesh were not aware about the concept of palliative care until recently. We came to know that the National Institute of Cancer Research and Hospital is also opening a palliative care unit soon. We consider this to be a significant mile stone of our campaign.

Slowly people are showing interest to be a member of the AVC (ASHIC Volunteer Corps). A chapter of AVC in Sylhet, another district town 200 km from Dhaka, is in the process of formation. We are organizing a training program in Sylhet for 40 participants of doctors and nurses to be selected by AVC members of the Sylhet chapter. The training will be conducted jointly by the AVC oncologists and expatriates from the UK arranged by Geoff Thaxter from MCM funding.

The  Dhaka Medical College, the number one medical college and hospital in the country is also now realizing the importance and appreciates the need for palliative care. So, we hope it is not far away that palliative care will be taken up as a national agenda for patients of all ages.

Lessons learnt

We believe palliative care is the most important item in countries where medical facilities are insufficient. But it is felt that this new concept has little acceptability as doctor’s preference is to focus on patients with hope of recovery more than on those who no longer respond to treatment even though the majority of children falls under this category.

ASHIC is working hard to make the project a success. However, the progress has not yett been at the anticipated place because of little acceptability of the palliative care concept both by doctors and the society. Therefore, sufficient social interest could not be generated for fund raising from local sources and we see a weakness in the project’s sustainability without assured funding from international sources for an extended period.

Transportation of terminally ill children by public transport to their home village is very difficult and risky. We will need ambulance cars and more ambulatory facilities for palliative patients.

We also need:

-  Seminars and workshops

-  media publicity

-  outreach programs on home care and community support

-  access to palliative medicines.

This can be done with

-  Assured availability of funds and fund raising

-  Government policy to provide better access to palliative medicines which are restricted to control drug abuse.

-  More volunteer members in the AVC to support ASHIC activities nation wide

-  Regional centers of service and develop community support

-  More media awareness, advocacy and lobbing.

At this point, I would like to mention a few names, who have helped ASHIC to go ahead with the project: Prof. Dr. Tim Eden, Isabel Mortara and Jose Julio Divino of UICC, Caty Forget and Catherine Boniface of Sanofi-Aventis.

ASHIC appreciates their involvement in the project, and would like to say Thank you.

Afzal H. Choudhury
ASHIC - Foundation for children cancer, Dhaka, India

www.ashic.org