Excerpted from "the project" page.
In August of 2015, six students from Tufts University were paired with a mix of six photojournalism students and young professional photographers in Kenya to collaborate on a series of character-based, multimedia narratives to bring a human face to the extremity children and adults face in living with life-limiting illnesses without access to pain medications and palliative care, as well as to those working to extend palliative care in Kenya.
The hope of the project is that medical professionals, government officials and activists in Kenya and beyond will be able to use these narratives in their campaigns to expand palliative care and break the logjams that currently prevent access to pain medications.
It is important to note that Kenya is not alone in its challenge to meet the palliative care and pain management needs of its citizens. This is a widespread, global issue.
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 addition to raising the consciousness of the government, the medical community and the public about the need for access to pain medicines, this project engaged students from Kenya and the US in cross-cultural learning and collaboration and developed their skills in non-fiction, narrative storytelling and photography.
The project was sponsored by the Public Health Program of the Open Society Foundations.
I was one of the six students from Tufts and contributed a photo essay ("Samwell") and a short film ("A Calling"). I also was the primary web designer for the project website which was created on Squarespace.
the more than pain website
While each journalist worked independently or in small groups to create their stories, it fell upon myself and the project leader, Heather Barry, to collect all the interviews, short films and photo essays into a coherent web project. My responsibilities were to design the site map, populate the pages with our work and develop a coherent design philosophy for the project. Heather took charge of collecting the material and drafting the site's copy.
patient stories: samwell
Below are a selection of photographs and an artist statement from my work documenting Samwell, who passed away during our work together.
Samwell Mosota Omaiyo sits up in his bed on Sunday afternoon at the Texas Cancer Centre in-patient facility in Nairobi, Kenya on Sunday, Aug. 23, 2015. He was recently diagnosed with late-stage mandible cancer and is extremely sick. The nurses who take care of him here at the Centre are trained in palliative care and tend to over a dozen patients around the clock in this small medical building on the outskirts of the city.
Although Samwell’s cancer is severe, he has been marginally improving over the past few days. After a visit, his family was relieved to find their 52-year-old relative had been experiencing more moments of lucidity.
Due to a lack of diagnostic technology and a stigma around cancer in Kenya, patients like Samwell often are not diagnosed until their illnesses become terminal.
At the Centre, all the nurses work exclusively with patients who have life-limiting illnesses. Part of what separates palliative care from other forms of patient care is the holistic approach to treatment. This includes caring for the patient's emotional and psychological well being as well as their physical needs, and working with their families.
Samwell, whose family visits him regularly, has his pain constantly managed through multiple high dosage opioids such as morphine. Since his cancer attacked his jaw, Samwell is unable to eat, drink or talk, receiving nutrients through an I.V. He is one of the few Kenyans who is able to receive pain management treatment.
The majority of medical professionals throughout Kenya -- and throughout much of the developing world -- are not trained in palliative care and pain management. Nurses in Kenya, unlike their Ugandan counterparts, are legally barred from dispensing morphine and other opioids to patients in need. They stand on the front lines of a national struggle with rising cancer diagnoses, HIV-related complications, and other life-limiting illnesses, but without many of the tools necessary to treat their patients' pain.
On Wednesday, Aug. 26, 2015, Samwell Mosota Omaiyo passed away due to organ failure early in the evening. He died peacefully.
A palliative care nurse, Carren Asembo, attended to him in his final moments. When his wife called to see how her husband was improving after a particularly lucid visit earlier that day, Carren had the responsibility of informing her of Samwell’s death. When asked about how she felt having to deliver the news, Carren said, “Nursing is not a job, it's a calling. Those who can't adjust and handle caring for others come, but they soon leave.”
While photographing Samwell, we interacted mostly with his caregivers, family and nurses. "A Calling" is a film that profiles palliative care nurses and the challenges stigma around morphine creates for their work.