It is Friday afternoon and after a 2 hour cab ride find ourselves at the gate to Hospice Africa Uganda. We head to what seems to be the main office. When I explain that I am there to volunteer they are confused and send me to someone else who checks and tells me that they cannot find any of the information I had sent them. They had confirmed months ago that they had recieved it. My son and I look at each other, laugh and say “T.I.A” (this is Africa) for the hundredth time on this trip.
They make a call to Dr Eddie and I am confirmed as a legitimate nurse and volunteer. The whole mood changes and everyone seems to appear suddenly out of nowhere to welcome us. I have found Africans in general very friendly, but Ugandans in particular. They are extremely affectionate as well and hand shakes and even hugs when introduced are the norm.
We are put up in one of the guest houses here which are very adequate. We are told to ask for anything we might need and feel very looked out for. The first day we are given a tour of the facility. There are several buildings that house the pharmacy, clinic, administration, education (with library) and doctors and nurses. As I am introduced I am struck by how professional and seemingly organized it all is. In fact it feels very much like the hospice organization I am familiar with.
HAU was founded by Dr Anne Merriman about 20 years ago. She is a British woman who was called by her profession and her Faith to do something about the suffering of the very ill and dying people of Uganda. She is now 77 and still very much involved.
We are invited to her house for dinner soon after arriving. I am nervous because I admire her so much. She lives in a very comfortable but extremely modest home. There are two other volunteers joining us for dinner. Both young women, one a physician from Ireland and the other a physiotherapist from the UK. We share our stories and have a lovely evening. Dr Anne is warm and down to earth and I feel comfortable with her immediately. Tomarrow we will start our clinical time here.
Day one, Monday.
Every morning is started with prayers, which consists of a gospel song and a brief prayer. All the staff seem to join in. Then there are announcements if any. That first morning Sequoyah and I are intoduced and asked to say a few words about ourselves. When it was Sequoyahs turn he stated that he had no medical experience but that he was happy to be put to work doing anything that needed to be done including playing his guitar if that was something some of the patients would like. Dr Anne had already gotten him in touch with a man she knew who assisted with the children in the local slum and they planned on meeting on Wednesday.
After prayers and announcements there is a clinical report session where difficult cases are brought up to the teams and discussed. There are 5 teams. HAU has a census of over 1000. Many of these patients are AIDS patients and many of those are discharged after their pain is stablized. Not being a government funded program they can take any patients on who need symptom control even if their prognosis is not set at 6 months or less. In each team there is a team leader who is a nurse, a visit nurse and an MD. Sometimes it is the whole team that goes out and sometimes just the visit nurse. Each team goes into the field 3 alternating days a week. The other 2 days they remain on site to assist in the clinic that exists on site, or do paperwork. The ambulatory patients that are able to come to be seen there. Bed bound or hospitalized patients are visited.
Patients here often continue to receive treatments as the funding here is very different than the US. Hospice of course does not fund treatments but there is a lot of care coordination with the oncologists, hospitals and AIDs organizations. Many, many Ugandans are HIV positive and the health organizations attempt to get as many on ARVs as possible. Other than AIDs the patients are primarily cancer patients. One physician told me it is not unheard of to take on a cardiac or respiratory patient but is unlikely to happen unless they have pain. There are many children on hospice here. Many are HIV positive and many have cancer. We have heard from the people here that cancer rates in Uganda have risen drastically in recent years. There is an increase in industry and with that, pollution. One person told Sequoyah that there was a plan to dump DDT into Lake Victoria to try and kill the hyacinth that has started to invade there. It interfers with the fishing! The burning of plastic is common as there is poor garbage infrastructure. Bottom line, I can see some very immediate reasons why the cancer rates have risen.
That first day Sequoyah joins us on our visit with one of the nurses to the general Kampala hospital. As I said, they are very welcoming to us and never gave it a thought that he should not see the patients also. I keep telling myself that I should not be shocked by what I see and I am continually shocked nonetheless. This hospital is the main hospital that people from all over Uganda go to who have no money. It is 6 floors. I am told that the 6th floor is where the “paying” pts are treated and it is much nicer. We do not make it to the 6th floor.
Our patient is in a ward which is a very large room that is filled wall to wall with beds. Every bit of space in the center of the room has beds also. There is literally 2 feet between beds at best, barely enough room to walk around in. Every single bed is filled with a man, woman or child. No screens, no curtains,no privacy whatsoever.
Our patient, Julia, has rectal cancer. She is obstructed and they were intending to do surgery but she has declined so much that even the surgeons have given up that idea.
I have to pause and tell you here that patients must be cared for by their family. There are not enough nurses to care for the patients. There is no food provided by the hospital so this is brought in by the family. For poor families who live hours away this is an extreme hardship as you might imagine. On top of that the patient provides their own medications. The doctor will write a prescription and the family will go to either the hospital pharmacy or one of the many street side pharmacys and purchase the medication and bring to the patient to be kept at the bedside and administered by the patient or family. (And we thought our health care needs improving!!!)
So for Julia, our patient, her caregiver is her 12 year old daughter. There luckily happens to be one other empty bed next to her moms where she is sleeping. I wonder as I watch her if she understands that her mother is dying and wonder what will happen to her then. Looking at her mom I think it is douptful that she will be leaving the hospital alive.
Julia is nauseous and vomits into a small bucket and then asks us to assist her to the (literally) bucket under the bed. At this point Sequoyah quickly pardons himself and goes into the hall.
We see several other patients here. As you walk the halls and outside corridors there are people “camping” in every free space. Mostly they are the patients family. Some are patients waiting for a bed. I am overwhelmed by human bodies, poverty and suffering. It felt at time surreal, and I could imagine it was just movie set. Like those war movies where there are cots of suffering beings lined up in rows to waiting to die. Not that everyone there was imanently dying, I am being dramatic, but it felt dramatic.
We left there and headed back to HAU by way of the vans that transport the clinical staff. The roads are so bad here and traffic so horrendous that they have found it much more efficient to have drivers take the docs and nurses to where they are going. Its a good idea as I would have been too shaken up to drive after my first day.
That was only day one, much more to come.