When you work in palliative care, people often ask why you’re working with people who are dying anyway. They assume it must be hard to be surrounded by suffering.
Indeed, at Hospice Tororo we do see a lot of suffering.
There is no easy way of saying this. It is hard to see patients with cancer who have curative options, but who are simply too poor to get treatment. The Uganda Cancer Institute, the only place in Uganda where treatment is available, is sadly often out of geographic and financial reach.
The fact that a patient’s economic status influences whether they are going to live or die is something I am still not used too even after all the years. Maybe it is good that I can’t get used to it.
A few days ago I met a beautiful 16 year old girl in the hospital. She was only diagnosed with a swelling on the thigh/hip and referred for further investigations to the Uganda Cancer Institute in Kampala. The hospital asked Hospice Tororo to help with the pain management.
When I saw the swelling it was immediately clear this was a malignant tumour, probably a lymphoma. In the rural settings we do not have the option to investigate further so the working diagnose is purely based on clinical observations.
The girl was emaciated and hadn’t slept for weeks because of the pain. She told me she grieved, not because of being sick, but because the illness had made her miss her final exams in school after she had studied hard.
At this moment it was up to me to tell her, her mother and one of her sisters the bad news. No doctor had informed them, they only knew they could get treatment in Kampala.
How do you break this news to a 16 year old girl, when there is no hope for treatment because her family is too poor? How do you tell a mother who wants to give the few coins she has to me for help, yet it is by far not enough for transport and upkeep, let alone for investigations and treatment?
It was difficult but they understood. Besides counselling, all I could do was start the girl on pain medication and pray with her.
For me, I had a battle that night, with myself and with my God. Why? How? Should I pay for this girl? But I don’t even earn enough for the full treatment… and if I help this girl, then how about the next child or adult that faces the same situation?
Although this suffering makes me re-value my life, it also helps me see the beautiful and more inspiring side of my work.
First thing in the next morning I visited the girl to find out if the pain medication had been helping her. She was asleep, and her sister told me that she had slept the whole night, for the first time in weeks.
While I was talking with her sister, the girl woke up and told me she felt great, the pain was gone. She told me that she slept so nicely and she felt renewed.
For me, this was a beautiful start of my day.
Later, in the office I found another one of our patients waiting. This patient is HIV positive and has Karposi’s Sarcoma (KS) on both his feet. Due to the change of ARV’s I saw that the KS had reduced so much that the toes look normal. He told me that had returned to his job again and could now, thanks to his treatment, provide for his family.
Shortly after he left, another patient came. She told us that her daughter just had given birth to a healthy baby girl. She was still in the hospital so we decided to visit. I was then told that the baby will be named after me, because the treatment I started two years ago made the grandmother stay alive and see her granddaughter being born.
For me this was such a very special and a beautiful moment. Combined, these three patients, who gained life after we treated them, all showed me that even when there is little hope, we still can make a big difference.
So although people might not understand how we can bare the suffering we witness daily, I know that working in the field of palliative care is at the same time so rewarding.
We might not be able to always save a life, but we can often help people to live life.
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