I’m in the palliative care hospital right now (err, last week), waiting for one of the home visit units to return, so I thought I’d jot down some of the thoughts I’ve been holding in my head recently on the culture of medicine I’ve observed here. I’ll keep it short with brief snippets, rather than the longer narratives I’ve been posting in past blogs.

Nurses have Superpowers

We’ve been working with Elisangela, a nurse here at the palliative care center. Watching her work, I’m not sure there is anything she can’t do. It’s amazing. She attends to patients, she logs patient records, she gives palliative care training to new nurses, she gives presentations on palliative care to hospital employees, she leads focus groups with caregivers, and of course she teaches us pesky interns as we follow her around. Honestly, we have reached the conclusion that in any ordinary setting, we’d expect at least 3 people to be doing the work she does. I’ve begun to wonder whether she’s being overworked, or maybe whether the amount of work she does is actually typical of nurses (in the US and in Brazil). I suspect it’s some of both.

Palliative Caregiver Focus Group

We just watched a palliative care caregiver focus group, and it was so difficult to get through. There were a lot of tears, a lot of intense emotion in the room. And yet, Elisangela was able to engage with the caregivers, connecting with them and giving them a lot of really practical advice. She was able to get them to listen to her instruction while also making them feel attended too, and it was really touching to watch.

The Palliative Care Taboo

One theme that we’ve encountered a lot is the reputation that palliative care has here. Whether it be patients or hospital employees, people tend to think of palliative care as the place patients go to die. It’s not a pretty picture, and patients are frightened of the place. Even employees walk in expecting gloom. What the palliative care center is working hard to do is reverse the taboo. Palliative care is about caring for patients, not giving up. It’s about making a difference, making patients happier, improving lives. While a lot of sadness happens here, the staff has really been trying hard to help people understand that the palliative care center is about quality of life care for terminal patients. It’s a subtle difference, but it makes a huge difference to the culture of care. From what I’ve heard, this problem isn’t isolated to Brazil. The United States has quite the palliative care problem too, so it’s interesting to see the kinds of initiatives they have here to improve and change the way people think about palliative care.