When the tagline of an organisation says “This child is going to die too soon, help them live well and die more comfortably and peacefully” somehow, it doesn’t have the same ring. And doesn’t get the same response.
My first hospice experience
When I was 23 I shadowed a nurse on my first hospice experience. We visited a 70-year-old woman in a small community outside of Meru, Kenya who had stage-4 breast cancer. In Meru, along with many other communities, palliative and hospice care is mostly provided in the patients’ homes. We drove our truck, with a suitcase filled with medication, as far as we could until the car could no longer make it through the brush. We eventually arrived on foot at her small home, which looked more like a tool shed from afar – a perception that was confirmed up-close. Inside we found a weak, fragile woman lying on her side, her swollen blue and yellow breast exposed and leaking fluid. I had never seen anything like this in my life but knew it was not the time to try and figure out how she ended up like this. Near her was a piece of bread, covered in ants. She was given the necessary medications, we smiled politely and told her we would pray for her. She died a few days later.
Continuing our visits, we arrived at a young man’s home. As we opened the door, I was confused as to why we were checking a closet. I quickly realized that this is where he lay, dead. He had died a few hours before we arrived and had spent his last breathing moments in a windowless closet.
I knew I would do whatever it took…
That morning I knew that while I would never provide chemotherapy to these deserving people or find that magical genetic mutation that would change everything, I would do whatever it took to make sure that no one would have to die in a windowless closet or have as their last meal, an ant infested piece of bread.
How does one measure these outcomes?
In my Master’s program we learned about indicators, results-based work, and the power of measurements. Through all of this I often thought, where does end-of-life care fit into this? You can measure pain medication stocked on a shelf or the number of patients who have access to chemotherapy. Beyond that lies the emotional burden and fear – from the moment of diagnosis to the uncertain outcome.
Beyond that lies the emotional burden and fear – from the moment of diagnosis to the uncertain outcome.
How does one measure pain reduction in a two-year-old who cannot properly explain where she feels the pain? Does one have to prove that a child cried 10 percent less than before? Can you give a number to show that a mother went to bed less scared than before her discussion with a social worker? Certainly this is not the only field that has difficulty measuring outcomes, but in a global health hierarchy where every organization is vying for the same big donors, not having those numbers can be the difference between having resources to help with palliative care or not.
I am often asked if it wouldn’t be more useful to work towards eradicating cancer rather than helping those who already have it die more comfortably. I admire the scientists and physicians, all over the world, working with millions of dollars in research towards eradicating the deadliest of diseases including cancer. However, while they try to figure it out, today there are still at least 21 million children, many of them living and dying in pain, who need access to palliative care. If they cannot be cured, can we not at least provide them with some relief?
Where do we fit in?
In the world of global health there seems to be a hierarchy of which diseases deserve more attention and funding. I remember sitting in a class listening to the lecturer actually blame the HIV ‘movement’ for receiving so much funding, compared to less popular diseases with less numbers of people affected. So where do we fit in? It doesn’t matter which disease these children have, popular or not. We just want every child to be as comfortable and peaceful as possible in whatever state or whatever illness they have.
The phrase ‘save a child’s life’, has more dimensions to it than people think. Sometimes giving them quality of life rather than quantity and keeping them from experiencing a lonely, isolated or painful death is to save them.
I do hope that one day the only thing we will be worrying about is curative or preventative measures. But until then, I will continue to fight for the comfort and dignity of all children, right up until their final hour.
If you want to join me, please commit here to do ‘Just One Thing’ to make a difference in the lives of children with palliative care needs.
About the author
Sophie Kieffer is an advocate for paediatric palliative care and has recently returned from visiting different successful paediatric palliative care programmes in Eastern and Southern Africa. She has also volunteered in similar work in South America, Nepal, and Israel. She holds a Master’s degree in Global Health from Georgetown University in Washington, DC and has been working with ICPCN for the past year to expand their network.