What brought you to work at Human Rights Watch?
I went to law school because I was interested in human rights work. Human Rights Watch has a strong reputation for doing different types of human rights advocacy. I started with a part-time internship at human rights watch, working mainly with disability rights. After this I found out that I had received funding to sponsor me for a year of work. I asked head of our department if they could take a fellow, and actually there were two people on sabbatical and one person on maternity leave, and there was this project in Senegal that they were looking for someone to do.
So my journey into palliative care was not a voluntary thing. I was interested in human rights issues and this project became available, so I decided to try it out.
Which projects have you worked on prior to starting this assignment on palliative care?
Prior to Senegal I was interested in criminal law. I did an internship on the international criminal tribunal for Rwanda. My work focussed on hate crimes, women’s rights and minority rights. I worked on human trafficking and sex trafficking issues.
What did you know about palliative care before you started this assignment?
Very little. I actually had to Google the term ‘palliative care’. When I started, I understood it to be concerned with health care and relief of symptoms. When I started my work I also thought that it was primarily for the terminally ill, which is a common misconception, whereas I now know that it can be beneficial throughout the course of the illness.
Was there a moment during your assignment that you became aware of the importance of palliative care?
Right when I went to Senegal I realised this right away, because there was a morphine shortage going on. The case of Abdoulaye, the one I wrote about in my blog, really brought it home to me. What really hit home was his mom going to the pharmacy to get pain medication for him, and then when she came back, watching her try to hold him. The pain from the cancer was so bad that she couldn’t pick him up to comfort him. So he was crying and she was crying too, and this just after she had given us an interview. That is a memory that really sticks with me.
Then you realise that palliative care is not just for the person in pain, but also for the patient’s family. Sometimes the family suffers more than the patient. Especially when the patient is a child, the parent suffers more.
Has your understanding of palliative care changed since your work on this project?
It changed really dramatically. I was thrilled to have the opportunity to work with Human Rights Watch, and this project was a way to do that.
I definitely want to mention that the way I thought about palliative care is the way that many people who work in human rights think about it. They don’t see it as that important. They would even ask: “Is this really a human rights issue? Doesn’t it detract from your real work?” This is how I thought before I worked on this project.
Now of course I’m very passionate about it. I understand that it is not only a human right, but also a fundamental right.
The pain that people feel in disease is similar to the pain that a person experiences when they are being tortured. But somehow, when the pain is coming from a disease, it doesn’t seem that bad to us.
Also, in the West or developed countries, these diseases are censored. In the US, if you have cancer, you get morphine. So I don’t think we are aware at all of how painful these diseases can be. I don’t think you see the terrible pain from not just cancer but also other diseases.
When I visited hospitals where there is no morphine, I think that this was a huge wake up call, to see that the pain people were in is so intense and so prolonged.
It seems very abstract until you actually see it.
Why do you think this change has come about?
I think its honestly a matter of ignorance. Before working for Human Rights Watch, I had never heard of palliative care. I think it is just a matter of awareness. I don’t think people know how painful these diseases can be. I don’t think anybody has made a movie about a cancer ward with no morphine.
In a lot of developing countries, not just the government, but also development organizations, do not recognise that palliative care is a priority. I think that palliative care sometimes gets lost in the other long list of problems to deal with. They also don’t realise how easy it is to solve this problem.
Is there anything we haven’t spoken about that you would like to add?
I think there is also an issue where pain relief itself is seen as something of a luxury. There is a doctor is Senegal who was doing eye surgery on a patient and the anaesthetic wore off, and the doctor commented that Africans are able to tolerate more pain than people from the West. I don’t think this is the case, I think that they are forced to tolerate more pain.
When I visited a cancer ward where they had no morphine, you can see that this is not a luxury, but an absolute necessity.