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)
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)
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)
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 2022
(Photo: Chris Swagga)
“Palliative care improves the quality of life of patients and that of their families who are facing challenges associated with life-threatening illness, whether physical, psychological, social, or spiritual. The quality of life of caregivers improves as well.” (WHO, 2002)
The African Center for Research on End-of-Life Care (ACREOL) is pleased to invite you to join the Ubuntu palliative care movement from October 9th to November 9th, 2021, under the theme of “Equity in access to Palliative Care.” To be equitable, palliative care must incorporate the local socio-cultural context of patients and their families.
“Ubuntu” is an African philosophy underpinned by interconnection and humaneness. It is often translated as “I am because we are” or “Humanity toward others.” It is a belief in the universal bonds that connect all people. (https://en.wikipedia.org/wiki/Ubuntu_philosophy)
Various words have been used to describe the presence of ubuntu: sympathy, compassion, benevolence, solidarity, hospitality, generosity, sharing, openness, affirming, available, kindness, caring, harmony, interdependence, obedience, collectivity, and consensus. Ubuntu is opposite to vengeance, opposite to confrontation, opposite to retribution, and that ubuntu values life, dignity, compassion, humaneness harmony, and reconciliation (Mugumbate J, Nyanguru A, 2013;)
There is a strong need to revisit perspectives on End-of-Life care and develop workable solutions amidst cultural diversity, existing practices, and evidence in modern society. There is an urgent need to create an Ubuntu palliative care movement grounded in a framework of compassion and consideration for the social-cultural context of patients and their families.
The COVID-19 pandemic has exposed an urgent need to improve end-of-life care. New narratives need to be sensitive to local context and traditional practices while addressing current issues faced by individuals and communities.
PLEASE JOIN THE MOVEMENT BY CLICKING ON THIS LINK: https://docs.google.com/forms/d/1V1p4zjIfnO1p-TdH9e6AI8eNYkGGvuI3Arxpx188P4A/edit
***By sharing your proverbs and quotes, you give ACREOL permission to use them to demonstrate the diversity of socio-cultural considerations in palliative care. The use will be anonymous, identified only by “role” and “country.” Examples of use may include 1. Sharing with the global community via the ACREOL website and social media 2. Presentation at educational conferences 3. Compilation and analysis for publication in the field of palliative care.
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
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Weill Cornell physicians in all specialty, other interested health care providers and students