Bringing palliative care to developing countries through the multi-region Lien Collaborative for Palliative Care Programme

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Dr Gilbert Fan recalled visiting a patient’s home in the slums in Bangladesh back in 2018. The walkway was so narrow that even a stretcher was unable to get through. He vividly remembered the poor living conditions of the closely packed huts, the muddy road that led to the main road, and a 1-hour drive just to reach the nearest hospital.  This experience further strengthened his belief that all patients should have equal access to healthcare.

Training the local healthcare and social workers on how to communicate with patient’s family members

Dr Gilbert Fan, Master Medical Social Worker at the Department of Psychosocial Oncology, National Cancer Centre Singapore, was part of the faculty team which includes doctors and nurses. His main role was to teach the local medical professionals and social workers on patient communication skills, which includes topics such as helping the patients and their families to cope and accept their diagnosis. Besides being on the Bangladesh faculty team, he had also been to Sri Lanka to teach under the Lien Collaborative for Palliative Care programme (Lien Collab).

The Lien Foundation and the Asia Pacific Hospice Palliative Care Network (APHN) partnered to start the Lien Collab in 2013. This programme aimed at capacity building in South Asia and Southeast Asia through bringing together like-minded individuals, corporations, and the Foundation for a common cause.

Patients with serious illnesses living in the slums or mountainous areas in Bhutan, Bangladesh, and Laos had to travel great distances to get themselves properly diagnosed or to receive pain treatment.

More than half of the world’s palliative care needs reside in Asia, with an estimated 2.4 million people needing supportive and palliative care services yearly.

The Lien Collab gathered volunteer doctors, nurses, and social workers from various regions as faculty to regions that have little or no palliative care to do bedside teaching and impart palliative care knowledge. The faculty leads also work with the local champions and policymakers in areas such as opioid medication access, building blueprints for a system to use controlled pain medications such as opioids, and supporting them in starting palliative care services.

Currently, the programme has more than 87 volunteers from regions such as Singapore, England, India, Australia, Canada, Japan, Malaysia, China, Hong Kong, and Taiwan. They had trained more than 480 medical care workers from 150 institutions across Bangladesh, Myanmar, Sri Lanka, India, Bhutan, and China.

Integration of care model into the local culture

Mother and Daughter conversing at a hospital in Myanmar. Lien Collab focus in helping the patients and their caregivers improve their quality of life. (Source: APHN)

When building capacity, the volunteer faculty team also has to consider the acceptance of the locals to this new model of care for the seriously ill and dying, which includes being culturally sensitive.

Dr Jamie Zhou, Consultant at the Division of Supportive and Palliative Care, National Cancer Centre Singapore, joined as Lien Collab faculty in 2018 and had since travelled twice to Bhutan.

While sharing her clinical knowledge, she also learned how the locals integrated their culture into care, such as engaging religious or spiritual leaders as partners in care to make this new concept of care more palatable to the patients and their family members.

“In Bhutan, for this group of patients who are seriously ill, they would first consult a religious leader (khenpo) before going to seek any medical help. As such, any palliative care plan is closely entwined to that of a patient’s religious belief. The spiritual aspects of the patient become the key need of patients in such cases.”

Care provided in the urban areas might also not be suitable for the mountainous rural areas in Bhutan. Hence, the local care team would come up with innovative models of care, such as setting up mobile clinics to provide vaccination and routine medical check-up services.

Dr Gilbert Fan, who had been to Vietnam to teach at the invitation of other organisations, realised that in Vietnamese culture, people are less likely to express their emotions outwardly. Hence, he would discuss with the local medical team how better build trust with palliative care patients and their family members to help them be more open to talking about their emotional struggles and find that reconciliation with their inner self.

“Every opportunity I get to go overseas as a faculty, I see it as a cultural exchange, where were can learn from each other and also broaden my horizon. It is not just about us going there to help them.”

It would not have been possible to explore other models of care without the help and support of the local medical team, as they are most familiar with the situation at the slums and could offer support to his team during their visit to the patient’s home. Gilbert was deeply touched by the positivity and friendliness of the patients even in their adversity.

Providing online training during the pandemic

During the COVID-19 pandemic, the volunteer faculty team was unable to travel on-site since last year. But, the team continued to provide palliative care training using an online platform and support the local palliative care teams through various online channels. The volunteer faculty team did all of this while battling with the pandemic in their own backyard as frontline healthcare workers in their own regions.

Dr Jamie Zhou pointed out that it is a different experience teaching online (such as via video conferencing) compared to bedside teaching where they can meet the patients face to face at their homes. Even with telemedicine, the faculty are still unable to connect readily with the patients and it was also difficult to demonstrate to the local medical team’s certain clinical procedures.

“To be able to be present in patient’s living environment can help the volunteer faculty understand them better. Clinical bedside teaching definitely helps to show palliative care in action. However, online teaching also enabled the local medical team to be more independent as they have more chances to practice what they learn, such as communication skills, in patient care.”

In view of the uncertainties due to the pandemic, it was difficult for the local medical teams to join the coordinated video conference monthly. Hence, the volunteer faculty would supplement the teaching with online group chats. This channel allowed them to get regular updates on the local medical team’s progress, discuss any complex cases and also build cross-border friendships.

The volunteer faculty team also provided suggestions to the local medical teams on how to care for their patients during the period where India was badly hit by the pandemic wave, including caring for patients in the ICU, such as clinical protocols and guides.

Expanding the Lien Collab to other developing countries

The Lien Collab has plans to continue training in India and China in the coming years and is looking to expand its programme to developing areas like East Timor and Laos.

Mr Giam Cheong Leong, the current Executive Director of the Asia Pacific Hospice Palliative Care Network, is also the main liaison person for the Lien Collaborative for Palliative Care. He said that it is important to consider the needs of the local health authority and medical organisation before reaching out to them.

The invitation from His Majesty the King of Bhutan

The King of Bhutan, His Majesty Jigme Khesar Namgyel Wangchuck, in the expression of his support of the palliative care programme, invited the faculty team to visit. This had etched in the memory of Dr Jamie Zhou.

According to Mr Giam, India will be completing its 4th run of training. Since 2016 till date, 22 volunteer faculty had trained 173 participants from 48 cancer treatment centres across 20 states and 2 union territories in India. Of which, 36 cancer centers had begun or expanded their palliative care service.

The aim of the program is to kick off its 5th run in 2022, increasing its current total of trained cancer treatment centres to 65, especially in the northern and Northeastern parts of India.

The Lien Collab has also started its virtual online palliative care training in China, including 46 doctors, 38 nurses, and 18 social workers from 21 local hospitals.

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Original article from 联合早报  translated by Joyce Chee (Assistant Manager, APHN)

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