Nov 18 2012

All hospice clinicians will tell you that the nature of the job is not predictable. You can make your plans thinking that you are well organized and productive and then have the whole day be one unexpected event after another until at the end of the day you can only laugh at the folly that one would ever think they had control in life. Thursday was one of those days with its own particular African flavor.
I was scheduled to go out to do home visits with nurse Roselight and Dr. Ludo. The clinicians are driven by hired hospice drivers in mini vans to the patient’s homes. The driver generally waits outside for the visit to be over and drive to the next visit. This day Dr. Ludo drove us in one of the Toyota SUVs owned by HAU. We planned on 5 visits, three new patients to enroll and two visits to patients already on service. The first person was not at home having gone somewhere else leaving us to wonder if they were really appropriate for hospice services. We left a card and asked his daughter to have him call when he got home. The second visit was an elderly man with prostate cancer and partial spinal cord compression who was having pain. He had weakness in all limbs and was only able to stand and walk with the assistance of a stick. The neurological compromise started over 6 months ago and it was doubtful that at this point anything could be done about it but we started him on dexamethasone anyway and of course morphine. He lived in a mud house, as many do, at the bottom of a hill and it was easy to imagine a flood running through his front door in the torrential rains here.
The roads in Uganda are the worse I have ever seen and pretty unbeleivable. Most of them are dirt and the frequent hard rains leave giant ruts that challenge even a four wheel drive vehicle. We wound around attempting to find our next patients home. None of the houses have numbers and you are lucky to find a street sign. The directions on the patients chart are things like, “follow road to large mango tree at the corner, turn left and continue to the chapatti stand then right, turn on the road across from the third black gate and stop at the end. Then walk 1 km to chained dog, house is next door” etc. We meandered down roads that literally looked impassible by car, having to turn around in tiny spaces many times. Once again I was impressed with the driving skills of Ugandans. But accidents do happen and at one particularly narrow turn Dr Ludo drove the front left tire right into a stone drainage ditch. The back right tire was off the ground by several feet so that I had to climb out dropping to the ground. My first thought was, well this is a fix. Second thought, I wonder if there are tow trucks in Kampala and we might be stuck here for a while. As my mind was pondering our predicament within seconds 10 guys manifested out of nowhere. Roselight and I were instructed to get in the back seat on the elevated side of the car for weight, Dr Ludo put it in reverse and the guys all worked together to push us out of the ditch. We were back on the road within seconds and the guys who helped us disappeared as quickly as they had appeared. Only in Africa!
We finally found our patients home only to discover that she had died over the week end. It is common here that the family does not call at a death but immediately take the body to the family village which is out of the area for the burial. We sit and talk to the adult step son who had remained behind lending emotional support and encouraged him to have the husband of the dead woman contact hospice for bereavement.
There were no more ditch instances that day but it still took us about 40 minutes to find our next house. We woke the family up who were all asleep on the living room floor. Apparently they had been up all night with the patient who was not doing well and she was taken in the morning to the hospital. By the end of the day we had only seen 2 live patients out of the five scheduled. Some things about being a hospice nurse are the same in both the US and Africa. And some things are very different.
The next day I was back at the Children’s Cancer Institute where the problems just seem to get worse with each visit. This time we find Sampson, who has AIDS and Non Hodgkin’s lymphoma. Sampson is 16 but like many of the children here looks much younger. He was here with his mother who was caring for him while he went through chemotherapy. She became very ill herself with her AIDs and was hospitalized leaving Sampson with his older sister to care for him. As he tells it he ran away from her as she was being cruel to him. He refused to go back. Sampson is due for another round of chemotherapy in 2 weeks. His village and what other family he has are many hours away. He currently is on ARVs (antiretrovirals) and determined to live. He just wants to be able to remain on the hospital floor until he can get his next treatment. He is very weak, barely able to stand and walk. He is skin and bones and appears in pain. The hospital staff demand that hospice take him in as he could not stay there without an adult. It was explained that this is not what hospice does. There are some local hostels that will take hospice patients in while getting or waiting for treatment but they all said that he needed an adult to stay there with him. One very courageous UK physician who is volunteering her time at the Children’s Cancer Institute states that she will make sure Sampson is not kicked out of the hospital over the week end, this being Friday and no solution found for this sad boy yet. We refill his liquid morphine making sure that he understands how to use it, gave him a blanket for the cold hard cement floor of the hospital and assured him and the hospital staff that we will attempt to find a solution for Sampson by Monday. As we are leaving Dr. Grace (a perfect name for her) the UK doctor, tells us that Sampson is only receiving palliative chemotherapy and that he will not live much longer even with this treatment. I become overwhelmed with sorrow once again in this sad place thinking about how he is so vigilant about taking his ARVs and coming back to the one place where he has some hope left for help and a cure.
There is only a 3% cure rate for cancer in Uganda. This is most likely due to late diagnosis, less than optimal therapies, and poor compliance. It seems to me a terrible disservice to most of the families who bring their children here from far away with advanced stages of cancer to be told that they should continue to come back over again for futile treatment when they can barely afford to eat let alone travel the distance to Kampala. I do not believe that many of them are told the prognosis, as death is not an easy subject in Uganda, although it is everywhere. I think of the guilt a parent must feel if they do not do everything the doctor says is needed to save the life of their child. So they give up valuable jobs, leave other children at home and live for weeks, even months sleeping on the hospital floor or the veranda in hopes that their children will survive.
It is not that this problem is unique to Africa. Certainly in the US people are treated for diseases with the latest in technology despite the prognosis. There is physical, psychological and financial suffering. But these costs seems so much more immediate and personal here.
As I am walking out the door I see a mother with her 4 month old baby who has a horribly deformed face (most likely from Burkett’s lymphoma which causes such deformities) attempting to nurse. It is difficult and awkward as half of her face is so taken up by tumor she can barely reach the breast. I am so emotionally drained and overwhelmed that I turn away. I feel the guilt of a survivor, returning to my comfortable lodgings and eventually to my wealthy country and my privileged life.

7 responses so far

  1. Thank you Maureen for your tender heart and willingness to share the sad with all of us. My heart and spirit are with you. Please share as much as your heart tells you too. We who are sitting comfortably in our homes with full bellies and clean water can help share the burden. As you share, my heart expands and the people of Uganda as well as you do not feel so very far away.
    Love, vilasini

  2. Maureen thank you for taking the time to share your journey – it is an incredible view for us into another world that is truly part of our world.

  3. Thank you, Maurine for sharing what is so difficult. It is an honor to participate in your journey through your beautiful writings. I can see that you will never be the same.

  4. You will never be the same after all of this you are experiencing. You will go through major cultural shock. You are right., We live a very privileged life here and I don’t think we really recognize or appreciate it.

  5. Thanks for sharing again Maureen. I am thinking of you and the people in Uganda.

  6. Maureen,
    We appreciate your taking the time to write about your incredible experiences. The people of Africa seem so resilient and strong, but they have no choice. You have chosen to take this path and I admire you for it. You, and the people of your stories, are in our thoughts tonight.

  7. Maureen,
    I can’t even begin to imagine the physical and emotional suffering you have witnessed. My heart breaks for you, but rejoices knowing that all these lives have been touched by your very special spirit. You are an incredible, strong woman who I feel honored to know.

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