A little about hospice….

I’ve had no experience with hospice in the States, nor any real, personal experience with death and loss (minus the death of my cats, which was surprisingly traumatizing). In fact, I have never even been to a funeral. So, of course, when I was asked to pioneer an internship at Hospice Africa, I felt completely out of my element. Strange to think that it is still possible in this world to have death and suffering not be one’s “element,” as we are all human and all destined for death eventually. I am realizing through my time here that the culture I grew up in was one both simultaneously afraid of death (to the extent of even denying its existence, especially in light of new, innovative medical technology) and obsessed with it (violent video games, gory movies, sky-rocketing gun violence, etc). These two tensions (with which Freud would undoubtedly agree) have done nothing to prepare me to think about or talk about death. let alone encounter people who are in the brink of it.

Taking a class with Dr Smith this last semester (Death, Grief and Consolation in Early Christianity) was helpful, particularly in helping to lay a good theological foundation regarding the Christian attitude toward death and grief. However, I still left the United States feeling inadequate (anemic?) regarding my understanding of death, particularly death from incurable (and often preventable) diseases like HIV-AIDS that have killed millions across Africa’s continent.

I still feel inadequate, but I think that’s why I am here: to learn more about hospice, palliative care, and end of life issues that are relevant not only to people here in Uganda, but people in Europe, North America, and around the world, as well. Death, the great leveler, has something to teach all of us on this planet.

As I said above, I knew very little about hospice before coming here, and I still feel somewhat “in the dark” about what hospice care looks like universally (i.e, it’s hard for me to compare hospice in Uganda with hospice in the US since I have so little experience with either!). But I am realizing that, too many Ugandans (most, I would say), ‘hospice’ is not a scary word. That’s partly because their requirements for hospice care are not as restrictive as they are in the US>. Back in North Carolina, if I was suffering from a terminal illness and hospice showed up at my door, I would know then and there that I had a diagnosis of 6 months or left to live. Perhaps some private hospice providers are different, but most that receive govt funding must restrict their care to only those patients who are close to death. Of course, it is possible to ‘graduate’ from hospice if your disease does not worsen, but eventually you will find yourself back in.

Hospice Africa in Uganda, on the other hand, is primarily focused on pain management, which means that anyone with a terminal illness, even if they have years to live, can receive care from hospice. Of course, those with HIV who are without pain do not necessarily receive care from HA, but that’s because there are so many NGOs here focused specifically on those patients. But HA does care for children with HIV who are on ARVS, as well as many HIV+ patients who have developed cancer and other diseases as a result of their diagnosis.

That being said, there are many patients here who have been receiving care from HA for 6 years or more. Some, as long as 10 years! I met a woman named Robeena who told me that she is now walking because HA was able to manage her pain. I believe she had a cancerous tumor in her leg which was operated on, but left her with incredibly pain, leaving her bedridden and unable to move. HA came in and taught her how to administer oral morphine, and she eventually moved from the bed to a wheelchair, and then a wheelchair to a walker. Though her diagnosis is terminal, she is living a fuller, richer life in her last days because her pain has been managed. And very often, if the pain is managed, patients will live much longer because they are no longer under such physical and psychological stress. It’s really amazing to see the correlation between pain management and extension of life.

Hospice Africa has over 80 hard working staff and many different aspects, including clinical and educational. They have trained thousands of health care workers, community volunteers and spiritual care givers how regarding end of life issues and palliative care. They visit people at their homes most days of the week and also host a day care when patients come to the HA compound to eat a meal, relax, and get to know other patients. They also learn basic crafts that they can use to support themselves, like bead making or mat weaving. They also visit patients in the hospital in the cancer wards. Denise and I spend a fair amount of time observing and being helpful where we can. Yesterday, I accompanied the staff social worker as she evaluated particularly impoverished patients who are receiving basic living funds from HA. The hope was the some of them would no longer need the funds because they were able to generate an income. We were in the slums of Kampala, and some the houses we visited were concrete blocks, as small as the average walk-in closet. One woman stayed in a tiny room with 4 of her children on one bed. I have never witnessed such poverty so close….only through the windows of my Uganda Studies Program bus or in pictures. But yesterday, I found myself in the thick of it…the flies, the urine-soaked drainage ditches, the moldy couches and children playing near steaming piles of trash, the desperate need. HA does much more than care for the ailing body. They are also attempting to lift some people out of poverty through micro-financing, and after what I saw yesterday, I am so thankful.

I have not found myself overwhelmed yet, though it’s hard to think about the fact that all of the patient friends I am making could be dead within the next 6 months, some…within the next week. “Welcome to hospice care,” Denise said to me when I made this comment. I guess this is the nature of the work. And, perhaps, everyone we encounter should be greeted with the same understanding that our lives our fleeting, and our present is precious. I read Tuesdays with Morrie yesterday (a fast read!) and appreciated the word of wisdom shared from a man dying of ALS. There really is something to be said about dying teaching you how to live. Many of the patients I meet are living their lives more fully than those healthy individuals I pass on the street. It’s a strange paradox. And one we should all ponder, I think.

Anyway, time at the internet cafe is running short. Tomorrow is Uganda Martyrs Day, supposedly a HUGE deal, so Denise and I are still debating whether or not we will go and brave the crowds at the stadium!! Always an adventure.