6/7: Today began what was to be a week long hospice tour across the province, reasons why it was cut short will be explained in the proceeding positive moments. So I was happy as a lark as my knees were jammed into my chest and my face nuzzled into the folds of a morbidly obese go go's breast all morning and into the afternoon on taxi after taxi. I had been anticipating these hospice visits for weeks now and felt so confident that I did my research and was ready to receive the advice my wise hospice elders would bring to me. First stop was Greytown where I was introduced by a fellow Peace Corps Volunteer to his counterpart who is about five steps ahead of me in the hospice process. They're in the process of both building the structure and securing a long term funding source but have a lot of the initial organizational questions answered and subsequent forms filled out. We were feeding off of each other's energy and I was just overflowing with enthusiasm by the end of our meeting. (Arrow here to the positive moment). I will explain my day past my positive moment to give some context to the following few days. He then suggested that I talk to his contact at the Hospice Association which is where my first of my blows occurred. She told me that there was a man who was literally just a step ahead of me in establishing a hospice. He went to the municipality then days later I would go proposing the same idea, he would go to the chief, I would go to the chief, same at the hospital and at the clinic, of course neither of us knew of our cat and mouse game. The most important punch he beat me to though was a simple form I was told to fill out just today. Unfortunately, since there can't be two hospices built within 50 km of each other for fear of duplication of services, he gets the keys to the city. So this first blow hit me pretty hard. But I wasn't ready to give up just yet so I went ahead to Tugela Ferry to keep my appointments I had lined up for the next day.
6/8: Out of the four hospices I had planned on visiting, this was the one I was looking forward to the most by far. This hospice started when the first patients of AIDS began to die. There are also researchers from Yale University who are performing intensive case findings to try to catch patients with TB and/or HIV to treat them as early as possible. Many of these doctors have been working in this village since AIDS was first discovered and have raised their children in one of the most resource-poor areas of South Africa. To say that I was in awe of their passion and sacrifice would be doing them a disservice, they are dripping in accolades, not that they would ever tell you that.
They had just returned from a national TB conference where they were showcased for their trailblazing work in TB and HIV. I had the opportunity to sit in on a meeting where they were talking about research that has never been done, dots that have never been connected in the fight of these two epidemics. I have no doubt that these doctors have and will continue to make break throughs that will change the lives of people suffering of these two diseases the world over. I was fortunate enough to talk to every one of these doctors, in addition to others on the staff, about the idea presented to me by my community for a step down clinic and to ask their advice on where to begin.
I was shocked, to be quite honest, when time and again they said that almost anything you want to do at a step down clinic you can do at home with a home based carer. (So the idea of a step down clinic is a new one for me before I dove head first into the world of hospice care but I defined it on 5/25 if you need a refresher). The organization I work in now has a home based care program which is where a volunteer goes home to home and talks to the home-bound patient, bathes them, changes them, makes sure they're eating etc. These doctors said that if you hire a professional nurse (someone with a four year nursing degree) then you would be performing basically the same service for a lot less money. So if you don't build a building, fill it with medical supplies, food, liability and staff it around the clock but let the professional nurse come to them, financially the difference is astronomical. This of course is logical but I still wasn't convinced. PEPFAR alone gives South Africa $660,000,000 every year just for HIV/AIDS and there are several other funders that I believe would have been willing to support an AIDS hospice so I was hesitant but not fully deterred...until I talked with Dr. Moll.
Dr. Moll is a world renown medical doctor who started the hospice and the home based care program in Tugela Ferry and has devoted his life to that village and to the end of TB and HIV. He was my strongest supporter for my step down clinic but swayed my decision in the end when he said, "You could help 8, 10 maybe 20 patients a month with a step down clinic but you could change the lives of hundreds of people every month with a strong home based care program going home to home meeting people where they're at on the ground." And that's when my decision was made.
Do I think a step down clinic/hospice would fill a need in my village? Yes. In crunching the numbers, there are a little over 17,000 people in my township/village. If 38% of them are HIV+ then that equates to 6460 people. I would be doing 99% of those people a disservice by building something they would never use. If I want to truly change the lives of the 6460 people infected with HIV in my village I now believe I need to do it one hut at a time, cleaning one bed sore, holding one hand, feeding one person. In fact ironically, the building would be the band aid not the home care.
I would be lying to say that I wasn't heartbroken. Even though I haven't been here long, the time I've spent has almost been completely monopolized by the idea of a hospice. I feel content in knowing I'm doing the right thing in letting this dream go but it was a dream nonetheless and one that I've been mourning the past few days.
6/9: As I write the emotional rollercoaster of the past few days I'm overwhelmed and excited to get back to the drawing board. I'm relieved that I realized so soon in my research of a red flag too large to overcome. I look ahead to a future that only days before was crystal clear and now is so hazy. I pray for guidance and patience to forge ahead in the right direction and not to fall down the rabbit hole of good intentions without opening the blinders that have my own selfish needs of fulfillment first.