The Lancet Commission on women, power, and cancer: Patient Stories
Prof Jennifer Moodley - University of Cape Town, Cape Town, South Africa
Why did you include patient stories? And what have you learnt from them?
So stories have been part of human connection for hundreds of years, really. What they help us do is really understand complex issues looking at structure of these issues. So we in the Commission, apart from the research we reviewed and the research we did, we really wanted to include the patient voice and so we did that through stories. And what these stories really helped illuminate was the overlapping forms of discrimination that women experienced as they interacted with the healthcare system. So, for example, we had a story that spoke to the discrimination women with cervical cancer and HIV experience, the stigma they experience really, and how that impacts and leads to a delay in seeking care for them. So, particularly on this continent, HIV and cervical cancer are two really important problems and sadly stigma is still an issue.
In that particular story, we also saw the issue of poor communication. So this particular woman, when she was diagnosed was told by the doctor that this was not a death sentence. But what followed was an interaction where, as she put it, ten other doctors then came into the room, and she did not understand why, but there was a discussion that went on. So immediately, she understandably thought the worst: that, in fact, this was a death sentence. And she began to make plans for what should she do with her children? Which friends could take care of her children, because her family was not going to do that for her?
So what that story showed was how poor communication, how failing to recognise that the patient is a person with a family, with a life, and how all of that needs to be taken into account when you engage with the patient. What you say matters, what you do also matters in that encounter.
We had other stories. We had stories where, for example, a woman discovered she had a breast lump and she knew that was serious, but because of family and financial constraints she had to wait to seek care. And when she did seek care she was at an advanced stage of breast cancer. What she recalled was being severely reprimanded by the doctor for delaying, for not taking her health seriously enough. So really, a lack of understanding of her situation and how that impacted her mental health.
We had another story of a woman who had colorectal symptoms that she was concerned about. She visited healthcare providers on many occasions and experienced multiple forms of discrimination. Largely her symptoms were being ignored. So eventually she’s diagnosed when she gets to the emergency department with late-stage disease.
And for both of those you see blaming of patients, you see dismissing of symptoms, so that’s what the story showed us. What we as a commission would like to do is to address those. So what the Commission wanted to do was discuss how can we address these kinds of stories, and change these kinds of stories? So the Commission has a set of recommendations such as gender sensitivity training for the workforce, for the cancer workforce, such as co-creation of gender transformative strategies both at the socio-cultural and the health system level, so that these stories change to one where instead of feeling fear and stigma when you suspect cancer, you’re supported. You’re encouraged, even, to make that journey, to seek care. And when you actually get to the care, that that care is respectful.
So what we hope is that the stories cause people to pause, to reflect on how they see or how they understand patient journeys – do they really understand the barriers that patients face, that women face in accessing care and receiving care; pause and reflect on their own behaviours and then look at the recommendations as a guide to what can we do about this.. So that the stories really change to one that reflect a sociocultural health system that provides accessible care, that provides respectful care, and that provides person-centred care.
Alright, thank you. I think that’s everything. Is there anything else you’d like to add?
I’m good, thank you.