Our last meeting of the day was with our Kafwe health workers to discuss their home visiting program. They visit people in their homes who do not have the family resources and support. Their patients mostly have HIV and TB and they work to support them as they seek treatment through antiretroviral therapy for HIV or antibiotic therapy for TB.
Most of their patients have very little support and when they are sick there is no one to earn money to provide for their children. Many of the patients eventually succumb to their illness and die. These women are providing palliative care to many of the patients they treat. As a physician trained in palliative medicine I wanted to see if there is something I could teach these health workers as they care for their patients.
When I treat folks in America that have a terminal illness my team often asks the patient two questions. First, as you look to the future, what are you hoping for? This question is often posed after a discussion around the seriousness of the patient's illness and many times patients have specific things they hope for like to be able to attend a grandchild's wedding or to be free from pain or to have their financial affairs in order. The second question is what are you worried about? These two questions help us to understand the patient's hopes and fears and we can hopefully begin to tailor our care and support to meet the patient's goals and needs.
Our health workers have been using these questions over the past year. What they discovered is that their patients are most worried about what happens to their family if they were to die and they worry about the cost of the funeral. The patients they see have so little resources that all they worry about is how their family will survive without them. Their basic needs are not being met so that is all they can think about. I asked if they could make plans for the future including who can watch their kids when they are gone. Like our own culture, most Zambians do not like to talk about their death or to make plans for after they're gone. Unlike our culture, however, I was told by this group that their traditional beliefs make it even harder for they fear that if they make plans for after their death(like who will watch the children after they are gone), they will die shortly afterwards. They also mentioned that there is nothing to plan for given that they have nothing to give anyone when they die.
I've learned enough about death and dying to know that it is an extremely cultural experience and it is not my role to pretend to know I understand this culture. I did discover that these women are providing true palliative care to the patients they care for. They provide physical support by cleaning the patients that are unable to do so and to help them find some food. More importantly they support these patients emotionally and spiritually by caring for them, listening to them and praying with them. They also can help provide transport to the hospital when needed.
You can imagine the emotional toll this can take on a health worker. Their patients need so much and they are only able to offer a little aspirin and their physical presence most of the time. Given the emotional toll, we've been working with them to make sure they have good self care and support one another as much as possible. One practice they have begun doing is a rememberence service where they list the names of the patients who have died over the past year. We do this in palliative care often and it gives us health providers a chance to remember and honor those we have cared for and grieve their loss.
At the end of this session I had an opportunity to make my own homevisit to a community member who was asking the Kafwe for help. I had some trepidation going to the house knowing that I had very limited resources at my disposal and unsure of what I would find.
The young man we were seeing let me into his mud brick home. He had injured his back lifting cement blocks for his job. Through help of translation, I learned that he had pain shooting down his leg. I also learned that when he had similar pain last month he went to the clinic and they took X-rays of his hip which I reviewed through his window. I performed an exam and diagnosed him with lumbar radiculopathy. We gave him some aspirin ( the only NSAID we had) and I gave him precautions and showed him bending at the knees not the waist when lifting heavy blocks.
It was not the emaciated AIDS patient I was expecting, however, his problem could be very serious and potentially threaten the life of his family and himself. If his injury persists, he could lose his job and be unable to provide for his family with three small children. I felt totally inadequate to deal with the depth of his problem and continue to be in awe of the health workers we work with. I am so proud to be able to work with them.