Research Description:

The first cases of the Covid-19 virus in Rwanda surfaced in March and the Rwandan government responded decisively and rapidly, adopting extremely strict measures (lockdown) to reduce the volume of patients attending hospitals. In this way the pandemic has highlighted and intensified the critical need to develop virtual infrastructures to continue to support vulnerable patients and their families at home.

To respond to these challenges, we hypothesise the efficacy of a smart-phone application to track patient’s symptoms in real-time. The building of such an application would enable palliative care teams to more efficiently respond to patients with uncontrolled symptoms, more appropriately triage home visits and phone calls, improve patients’ ability to communicate their needs with home care teams, and ultimately have an impact on patient outcomes. In short, it will allow for both the assessment and management of pain and other symptoms for advanced-stage cancer patients during pandemic situations in Rwanda.

(Photo: Chris Swagga)

Research Description:

There is a need to popularize, democratize, and decolonize palliative care in Africa; to change perceptions, and to change the narrative.

Even if palliative care is everyone’s business, the discourse used in the field is alienating and difficult to understand for most of the population.

In collaboration with the Rwanda Arts Initiative (RAI) and local artists, the intention is to highlight the role of Ubuntu in palliative care.

The project aims to train local artists in palliative care and End of Life Care and encourages all types of arts (music, painting, sculpture, poetry, photography, dance, artisanal crafts) to reconsider the myths and biases that so often color the experiences of those living with life-limiting conditions. It encourages artists to seek out instead of potential opportunities for love, laugher, creativity, and fulfillment at the end of life.

(Photo: Chris Swagga)

Research Description:

There are many cliches of draconian suffering and nightmarish imagery surrounding the portrayal of End of Life care in Africa. Contrary to popular belief, and despite the continent’s limited resources, the operative word in “End of Life care” is “Life”.

This 52-minute documentary in which patients and family members talk about their journey attempts to foreground the human element, rather than the disease.

To be sure, doctors play a key role in End of Life care but there are many unsung heroes working behind the scenes. The documentary takes an intimate look at the bonds that are built between patients, doctors, and family members. Framing the experience within a local context, the documentary reinforces the necessity of emotional support and an inclusive attitude. Above and beyond everything, it seeks to humanize the patient.

The documentary explores questions about life and death, the meaning of suffering, local perceptions of death, dignity in the face of death, family members’ perspectives, academia, and the role of physicians and social workers in a post-genocide society.

Ultimately, it focuses on love, dignity, and humanity in palliative care, encompassing different perspectives on death, dying, grief, and bereavement.

Publication: Early 2021

(Photo: Chris Swagga)

Research Description:

I no longer remember his name, but I still remember his face, his tears, and his pain, and his mother kneeling before me pleading, “Give something to let him sleep and wake no more.”

She was speaking in Kinyarwanda, our mother tongue: “Muganga, mbabarira,” she implored, “Please, I beg you.”

It was meeting her, the mother of a 24-year old patient diagnosed with Hepatocellular Carcinoma and dying in pain, that made me realize the crucial but neglected role family members play in palliative care and End of Life care.
.
Safari” means “Journey” in Swahili, a local language spoken in East African countries. This project will travel across Rwanda exploring the nature and character of suffering as experienced by End of Life Care patients and by the family members who are on the journey alongside their loved ones.

Safari explores different narratives, gleaned from 500 to 800 family members meetings held between 2009 and 2019. It describes the meaning and character of suffering among those families, the language they choose to use, and their many, varied experiences of death and dying.

Publication: The book is expected to be published between early-mild 2021

(Photo: Chris Swagga)

 

Research Description:

Ubuntu is an African philosophy underpinned by interconnection and humaneness. It is often translated as “I am because we are,” or “humanity towards others,” or in Xhosa, “umntu ngumntu ngabantu”. It is a belief in the universal bonds that connect all people.

There is an urgent need to create an Ubuntu palliative care movement, couched within a framework of compassion and consideration for the social-culture context of patients and their families.

This project aims to share African findings and experiences to better advocate and model equity in palliative care through the ethos of Ubuntu.

Africa is not only a continent; it is a set of values and a spirit. Collaborators will focus on sharing and connecting the concept of Ubuntu as it applies to palliative care with a particular focus on the African continent by generating evidence-based findings through research, arts, education, training, and advocacy.

Please join the movement!

(Photo: Chris Swagga)

Speakers: Christian Ntizimira, MD, MSc and Holly Prigerson, Ph.D. have nothing to disclose and DO NOT INTEND to discuss off-label or investigational use of products or services. Eric L. Krakauer, MD, PhD DOES NOT INTEND to discuss off-label or investigational use of products or services and discloses the following: My wife is a salaried employee of Inform Diagnostics and Foundational Medicine

Course Director/ Planner: Madelon L. Finkel, Ph.D. has nothing to disclose.

Coordinator/ Planner: Savita Birbal has nothing to disclose.

Planners: Claire Kenney and Maritza Montalvo have nothing to disclose.

CME Staff: Have nothing to disclose

WCMC does not accept industry support for any regularly scheduled series. Any exceptions to this are approved by the CME Committee, and will be disclosed prior to this presentation.

WCMC is accessible for individuals with disabilities or special needs. Participants with special needs are requested to contact the Office of CME at 646-962-6931.

Faculty Disclosure

It is the policy of Weill Cornell Medical College to adhere to ACCME Criteria, Policies, and Standards for Commercial Support and content validation in order to ensure fair balance, independence, objectivity, and scientific rigor in all its sponsored programs. All faculty participating in sponsored programs are expected to disclose relevant financial relationships pertaining to their contribution to the activity, and any discussions of off-label or investigational uses of approved commercial products or devices, or of any products or devices not yet approved in the United States. WCMC CME activities are intended to be evidence- based and free of commercial bias. If you feel this is not the case, please call the Office of Continuing Medical Education at 646-962-6931 to anonymously express any concerns.

Target Audience

Weill Cornell physicians in all specialty, other interested health care providers and students

https://endoflife.weill.cornell.edu/news-and-events/development-rwandan-usa-research-partnership-study-end-life-care