Week 6 (June 17-23)
Research Experience
We only went to the hospital Monday-Wednesday of this week, but we still learned a lot! On Monday, we were able to interview two patients and a patient relative. The patients we spoke with were friends of the volunteer patient we interviewed last week. They were just coming in for their check-ups/chemo and we were able to interview them at the information desk the volunteer works at. They were all breast cancer patients, and clearly had formed a community of patients and survivors that played a key role in their social support systems. One of the patients had even started an NGO to further help other cancer patients. The relative we spoke with was the best friend and caregiver of a young man with osteosarcoma. We had dinner with them on Sunday, and so on Monday when the caregiver came to the hospital to refill the morphine prescription, we were able to interview him privately.
On Tuesday, we met and shadowed a palliative care nurse who had been at a conference the previous week. She is the nurse we will be shadowing for the rest of our time at Ocean Road. Shadowing her has gone well so far. She is very kind and makes an effort to include us, and it is also relatively easy to follow her conversations with patients, so I feel like I am understanding more about how discussion of pain between doctors and patients actually works. She also lets us see the notes she takes, which are in English. On Wednesday, we observed her counseling sessions with relatives of very very sick patients.
This week we were also able to interview a lecturer at MUHAS ( the Muhimbili University of Health and Allied Sciences) who teaches courses on palliative care and is currently getting her Ph.D. in that field. Her interests are very aligned with that of the project, so it was a great conversation.
Findings
1. Discussion of Pain
I'm not sure if it's because I've been doing this for six weeks or if it's because this nurse is just more direct, but it has been much easier to follow discussion of pain. Pain reduction is the goal of palliative care, and so nearly every conversation begins with 'Maumivu?' ('Pain?').
2. Role of Relatives
Observing the caregiver/best friend of the young man as well as the relatives during the counseling sessions made it more clear than ever both how important the support of relatives is and how difficult and lonely that role can be. Additionally, the amount of labor and advocacy work that relatives do in the ward continues to amaze me.
3. Fake Pain
The theme of 'pretending' to be in pain has resurfaced here as well. Interviewees have raised the idea that patients sometimes claim to be in physical pain when they are in fact suffering from psychological or social issues. Along with this conversation comes questions such as who benefits from extended hospital stays? why? who is supported during these stays? by whom?
4. Use of English
Although most conversations between healthcare workers and patients/relatives happen in Swahili, English is sometimes used in surprising ways. Due to taboos surrounding direct confrontation and frank discussion of difficult topics, phrases such as 'peaceful death' and 'scientifically, she cannot benefit' and 'there's no room for active treatment' are said in English. Are people actually understanding the severity of their situation as a result? Unclear.
