But sometimes the trains get derailed.
He suffered in silence, no sensation from his abdomen to his toes, feeling nothing but uselessness since his fall from a high branch, breaking his spine in half. His wife was in the fields doing “his work” as he sat propped up against a tree trunk under a suspended tarp shielding the midday sun, the starving children crying until their mother comes back to prepare them a meal with which he cannot help.
~A neighbor had called us to see him after hearing about our team while she was at the hospital visiting a friend who had received palliative care there.
Sometimes, the tracks deliver a message of a problem back to our brains.
She suffered in silence from the pain in her bones; the growing cancerous spots gnawing day and night, selfishly never taking a rest from their relentless invasion of her body. But with a typical Ugandan shrug of “it is what it is” stoicism, she sat quietly, only her facial tightening tattling her misery. “What good is it to complain when there is nothing to be done?”
~Her village health worker had called us to see her. Village health workers (VHT’s) have minimal formal medical training and are community volunteers who triage health issues of their neighbors to local medical practitioners and facilities. Fortunately, this VHT had sat through a day-long presentation with 85 other VHT’s invited by our organization to learn from our Ugandan palliative care team that something can be done to alleviate the suffering of their fellow villagers.
In his book, “The Nature of Suffering,” writing about the treatment of ailing patients, Dr. Eric Cassell states that success comes from not only treating the disease, but also treating the person and their unique web of social interactions including family, job, and community. “No person exists without others; there is no consciousness without a consciousness of others, no speaker without a hearer, and no act, object, or thought that does not somehow encompass others. Furthermore, the extent and nature of a sick person’s relationships influence the degree of suffering from a disease.” In other words, a person’s suffering cannot be treated by medicines or surgery alone.
Or as Nobel Prize winner Dr. Bernard Lown wrote, “Caring without science is well intentioned kindness, but not medicine. On the other hand, science without caring empties medicine of healing.” (The quote familiar to my patients hangs framed on the wall of my office examining room.)
But in a country like Uganda, and particularly in the rural areas where the science side of the balance is critically limited, it is the humane caring and communication that fills the deficit, and enriches the treatment. The crux of caring comes not from medical technology, but through trained and practiced communication, a skill as difficult to learn as any medical procedure.
Our organization, started some 7 years ago, Palliative Care for Uganda, recognized the gap between science and caring in medically under-served areas, and set out to reduce the suffering of people that couldn’t get adequate disease treatments found in more economically sufficient areas. Initially our work involved bringing supplies and palliative care expertise from the first world and adapting them to the third world. Yet the old adage, “You can give a man a fish and he’ll not be hungry for a day, but you can teach a man to fish, and he’ll never be hungry again,” made us rethink our approach.
Over the past couple of years, we have started developing an educational curriculum in Communication and Palliative Care for healthcare workers in rural Africa. With the help of the filmmaker that is making a documentary of our work in Uganda (Yes, believe it or not, someone actually thinks a documentary should be made about us), we have had access to video footage of patient encounters with our Ugandan team that demonstrates very clearly many of the palliative care principles that can be learned and implemented by local African teams who take the educational program we are designing based on the videos. We rolled out a pilot program this past spring to several rural Ugandan health facilities to great success. Our hope is to develop the course further so it can be given to many local healthcare teams to teach workers how they can implement what we do, on their own.
And while we originally felt that the curriculum would be helpful primarily for rural Uganda, when we presented the pilot curriculum to the pan-African organization, The African Palliative Care Association, they told us that they believe that this self-study course is relevant to many countries in Africa, not just Uganda. In fact, they have requested that we present it to its 28 member countries at the International African Palliative Care conference in Rwanda next year.
Remember those two types of nerves running to and fro? Well, our organization has a nervous system of its own. One is feeling the need, sensing the suffering of the people around us. But the other drives the mechanisms of action, to make things change, to make things better, to educate more health workers, to move things forward. With the help of our supporters, we aim to make sure that the signals function at optimal levels – in both directions - and help as many people as we can.
Howard and Randi
Palliative Care for Uganda, Inc