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Dignity for the severely ill

  • Published at 03:33 pm November 30th, 2019
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Dr Bimalangshu Dey and Nusrat Feroz Aman (far right) attending a palliative care event organized by Ayat Education. Courtesy

How a Bangladeshi born doctor representing Massachusetts General Hospital and a local NGO are working together to make palliative care available for Bangladeshi patients

“Do you know where you are with your illness?” This is not a question someone usually hears from their doctor. But this is among a series of important questions a physician trained in palliative care might ask a patient; not to confront him/her with difficult reality, but to begin a process that will eventually lead to the improved quality of life for the patient.

Palliative care is a multidisciplinary approach that includes pain relief, mental health services and hospice care for patients suffering from severe and chronic illnesses such as cancer. 

In a country that is struggling with poverty and income inequality palliative care is an alien concept to most Bangladeshis. Bangladesh’s healthcare system suffers from “weak governance structure and regulatory framework, ...fragmented public service delivery, inefficient allocation of public resources, high turnover and absenteeism of health workers, and poor maintenance of health facilities and medical equipment,” among other challenges, according to the World Health Organization. The prospect of incorporating a holistic, multidisciplinary approach like palliative care in the system seems daunting.

But in spite of the limitations, Nusrat Feroz Aman and Dr Bimalangshu Dey say that basic palliative care doesn’t have to be inaccessible, nor is it a luxury that only the wealthy should enjoy.

For instance, one of the most common elements of palliative care -- easing of intolerable pain -- is achieved by better distribution of appropriate pain medication. Currently, it is almost impossible to have easy access to such essential drugs for people living in lower-middle income countries (LMIC) like Bangladesh. Worldwide distribution of opioids-medication, essential for pain relief in intense illnesses like cancer, is in a state of complete imbalance. 

Of the 298.5 metric tons of morphine-equivalent opioids distributed throughout the world per year, only 0.1 metric ton goes to LMICs, according to The Lancet. The United States produces or imports 31 times the amount of pain relievers it needs, whereas countries like Nigeria receive just 0.2% of its need. Over 61 million people are affected by serious health-related suffering across the world, among which 80% live in LMICs where palliative care is scarce or non-existent.

This is precisely what Nusrat Feroz Aman and Dr Bimalangshu Dey are on a mission to change. “An American patient on average takes 55 thousand milligrams of morphine over a lifetime. In comparison, a Bangladeshi patient takes a mere 53 milligrams over a lifetime,” said Dr Dey, a Bangladeshi born American physician working at the  Massachusetts General Hospital of the Harvard Medical School, where has been a physician since 2000. He is an Associate Professor at Harvard Medical School and Faculty in Global Health at Massachusetts General Hospital. 

Specialized in bone marrow transplantation, Dr Dey’s initiative led to the first bone marrow transplant in Bangladesh, as widely reported in the local media. In recognition of his efforts, he was very recently given the Endowed Scholar Chair in Global Health Oncology at Massachusetts General Hospital, Harvard University for significant contributions to Global Health in Bangladesh. Dr Dey will remain in the chair for the rest of his career and at the time of his retirement the chair will become the Dr Bimalangshu Dey Endowed Chair in Global Health Oncology in perpetuity.

Dr Dey’s recent initiative in Bangladesh to help create a healthcare system that accommodates palliative care began by partnering with the government of Bangladesh and local collaborators like Nusrat Feroz Aman’s organization Ayat Education. 

“We have had tremendous successes in our previous initiatives because the government assisted us. It is worth mentioning that without that support we would not have been able to do what we did,” said Dr Dey, whose first three projects in Bangladesh included nurse training, training physicians in cervical cancer treatment and bone marrow transplantation. These projects were supported by the Massachusetts General Hospital, which provided trainers and other resources. A big part of the funding was also provided by the Aga Khan Trust. 

Now onto the fourth project, Dr Dey began working on palliative care in Bangladesh in 2017. 

“In 2017 the team from the Massachusetts General Hospital (MGH) decided with Ayat Education in Bangladesh to work on palliative care medicine,” said Dr Dey. Supported by the MGH team, the local partner for the project Ayat Education is well on its way to implement some of the major goals. 

“What Ayat is doing is bringing together all the individuals and institutions to work in palliative care in Bangladesh, as well as us from MGH together to bring a major impact on the awareness, education and training to deliver the service to millions in Bangladesh who are in so much need of palliative care,” Dr Dey said. 

Nusrat Feroz Aman, the Chief Patron of Ayat Education says the whole purpose of engaging in this project is to allow patients to have the human dignity they deserve. “One of the most important aspects of palliative care is to accept the fact that death is coming, but then make the journey more dignified,” said Aman. 

She said that the terminal stage of illness inevitably hurls families in a huge emotional and financial distress, who often take measures just to keep the patient breathing. “Palliative care, among other things, teaches the healthcare providers and other caregivers to make decisions based on the best interest of the patient,” said Nusrat Feroz Aman.

Beginning in January 2018, Ayat Education has already trained 300 nurses in palliative care. 

“Palliative care is a distinct field of medicine now. With a little bit of training a nurse or a family member can do palliative care,” said Dr Dey. 

Stressing on its two main goals -- relieving of the suffering of seriously ill patients and maintaining the dignity of the human being until death -- Dr Dey says the ultimate goal is to improve the quality of life. 

“Those who have a disease that is not curable or who have a terminal illness with lot of sufferings, you need to improve the quality of their lives. That is the core idea behind palliative care,” he said.

Relieving the suffering includes a lot of things. “It includes emotional distress, physical pain, sleeplessness. They have a lot of anxiety, they have a lot of fear. They can’t talk to the family the way they want. So, the care has to be focused on the patient,” Dr Dey said. 

Began as an end of life care in the 60s in the United Kingdom, the focus for the treatment was to simply provide the terminally ill patient with as much comfort as possible. But it later evolved into a science of its own, and now it is a separate field of study included in curriculum at medical colleges. 

“Now we know what that care can do is that it improves the quality of life, it maximizes the dignity, it empowers the patient and gives him the control over his own life. According to some studies it also increases meaningful lifespan,” said Dr Dey. 

This means not only does palliative care eases suffering, but it can actually help people live longer. 

Dr Dey is very emphatic on the significance of local partners. “Local partners are extremely important. We wouldn’t have been able to succeed without support from the government in our previous projects. The bone marrow transplantation project wouldn’t have been possible without people like Dr Mohiuddin Khan and Dr Akhil Biswas,” said the bone marrow transplant specialist. 

Dr Dey hopes the collaboration with Ayat Education will help build the human resources and awareness that will eventually make palliative care a reality in Bangladesh.