More than Pain: Documenting Palliative Care in Kenya

It is estimated that more than six billion people worldwide lack access to adequate pain relief.  Opioid analgesics, including morphine, are considered essential medicines by the World Health Organization, yet 85 percent of the world’s population consumes just seven percent of the global annual use of pain medications.  It is estimated that these low- and middle- income countries account for 70 percent of cancer deaths and 99 percent of HIV/AIDS deaths, two of the most common illnesses that result in intense, end-of-life pain.

In Kenya, it is estimated that deaths from cancer and or HIV/AIDS results in about 85,000 deaths annually, with an estimated 51,000 of those spending their last months in moderate to severe pain.  Based on the amount of pain medications that the Kenya Medical Supplies Agency ordered through the International Narcotics Control Board in 2012, less than ten percent of the 51,000 deaths are treated with adequate pain medication, leaving more than 49,000 to spend their last months in unnecessary suffering.

But treating the pain itself is often not enough.  Palliative care – preventing suffering and improving the quality of life – also needs to become a necessary component of the health system.

Through non-fiction, narrative storytelling and by working closely with the individuals affected by and invested in Kenya’s policies on access to pain medication and the provision of palliative care, the Program for Narrative and Documentary Practice of the Institute for Global Leadership at Tufts University sought to add a human face to these challenges and raise governmental, medical and public consciousness and action. 

Funded by the Open Society Foundations, six young photographers from Kenya worked with six current and former students from Tufts University came together in Nairobi in August 2015 for the workshop on “Documenting Palliative Care and Access to Pain Medications in Kenya” led by professional photojournalists.  The participants documented the stories of patients, family members, healthcare workers, and policymakers and advocates with the aim of creating awareness within Kenya and globally about these issues.

The initial phase of their work will be exhibited at Pawa 254 in Nairobi from October 9-25 as part of World Hospice and Palliative Care Week, with an opening reception from 6-10:30pm on Friday, October 9. It is open and free to the public. Light refreshments will be served, and a cash bar will be available.

Pain is an individual and isolating, interior and unsharable experience.  Elaine Scarry has written that “pain decontextualizes, it breaks the sufferer away from all other dimensions of this world.”