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Where Are They Now: Fulbright Scholar Studies Palliative Care in Malaysia

By Lisa Deng
Duke Alumna, Global Health Certificate ‘12
Fulbright Researcher

Lisa Deng (middle) with an oncologist and radiographer at the Sarawak General Hospital Department of Oncology, Radiotherapy, and Palliative Care.

I was first exposed to palliative care during fieldwork in rural Uganda through the Duke Global Health Institute where I worked with a physician to assess the needs of terminally ill people in a community lacking treatment for life limiting diseases such as HIV/AIDS and cancer. Seeing firsthand the extreme and largely preventable human suffering, I became interested in efforts to support people facing the end of their life in resource-limited settings.

After graduating from Duke in 2012, my interests in palliative care and global health brought me to Malaysia through the Fulbright Program where I am conducting qualitative research in four government hospitals across two states. Under the mentorship of Duke Global Health Professor David Boyd, I am collaborating with two physicians pioneering palliative care services in Malaysia to explore the communication needs and preferences of patients with advanced cancer and their families.

In my interviews, I am gaining an Asian perspective on expectations at the end of life. The important role of family is a value shared across the diverse cultures of Malaysia. Family members, such as the eldest son, are often responsible for liaising with the doctor and making decisions for the patient. It is not uncommon for families to hide certain information from the patient, such as poor prognosis. On one occasion, I witnessed an older patient who thought she was renewing her prescription for gastritis when she actually had stage IV lung cancer. Family members tell me they wish to protect the patient from the truth, fearing their loved one would become depressed and lose hope.

Because death is taboo in many Asian cultures, I anticipated this phenomenon. To my surprise, many patients also prefer and contribute to this “conspiracy of silence.” During interviews, some patients tell me they see no value in burdening themselves with knowledge of poor prognoses if they cannot change the outcome. Rather, they prefer to live each day with optimism. It is unclear whether patients and families would favor open and honest communication if comprehensive palliative care services were more widely available to provide emotional and spiritual support. However, it does underscore the need for doctors in Malaysia to be sensitive to information needs and work with the patient and family as a unit.

These past seven months in Malaysia have been extremely meaningful and rewarding. I am thankful for my global health education at Duke, which has prepared me to transform compassion and empathy for other human beings into concrete ways of serving. The lessons that I carry with me from courses, fieldwork, and mentors guide me through the difficulties of this work. The grief and loss I encounter on a daily basis can be intense and emotionally exhausting. But amidst all of the suffering, I have seen love and hope. In our conversations, patients share with me their histories, their dreams and fears, and their thoughts about living and dying. From them, I have learned about what gives life value, about acceptance and fortitude, and I am reminded that even in the face of death, there is always hope– hope for meaning, for friendship, for wisdom, and peace.

Look at the person, not the disease: A model for holistic health

By Caroline Hope Griffith
Research Analyst, Duke Global Health Institute

Dr. Sam Orach speaking to Institute participants.

Dr. Sam Orach, Director of the Uganda Catholic Medical Bureau (and Thursday’s plenary speaker), was trained to treat the whole person, not the disease. Diseases are influenced by a community’s economic, social, political, and religious context and to truly understand the cause of an illness, doctors must always examine this context.

Dr. Sabina Mtweve, our seminar moderator, introduced a model that helped us frame Dr. Orach’s approach. The model captures all of the different dimensions of a truly healthy community. First, there must be a balance between the mental, physical, emotional, and social health of individuals within a community. Second, spiritual life and the physical environment of the community also must be in harmony. Next, the community must practice equitable distribution of resources, offer access to education, and promote gender equity. Lastly, the community must embrace moral values, provide good leaders and equitable policies, and respect the environment. If all of these requirements are met, then the community will not only be healthy, but it will be peaceful.

Dr. Sabina Mtweve showing us a model of a health community in Swahili.

Cathy Groenendijk, Executive Director of Confident Children in South Sudan, gave a poignant, yet bleak, example showing the interconnectedness of these elements. The poverty in the slums where she works causes depression among many parents. These parents often resort to alcoholism and can’t care for their children. The children fall sick from poor hygiene, malaria, and cholera. They are also exposed to sexual exploitation and abuse and live in a polluted environment full of sewage and waste. All of these factors contribute to a breakdown of cultural norms and traditional ways of life, and the community loses its direction and hope.

These conversations make me think more deeply about the term “global health.” It is important to remember that global health refers not only to geographic diversity, but also to a global perspective that includes context and community.

Thanks to all of you for following along with my blog. After an exhilarating week, I’m headed back to the US. I am grateful for the time I spent in Uganda with these leaders and for the insightful dialogue and experiences we had together.

See my earlier posts from the conference:

– Health is Greater Focus of 2013 Peace & Reconciliation Conference in Uganda
– Building Healthy Communities in East Africa
– Don’t give up, don’t ever give up
– The gift of language: A little French goes a long way