Dr Jamilla Hussain, palliative care doctor and clinical researcher for the National Institute for Health Research (NIHR), joined Hospice UK’s CEO Tracey Bleakley to discuss racism in palliative and end of life care in a new podcast for Dying Matters.
Dr Hussain talked about the need to rebuild our healthcare systems in order to ensure genuinely equitable care. She also talked about the necessity for frank, honest conversations, and understanding of how complex the issue of institutionalised racism is.
“By not being actively anti-racist, the status quo is that you get advantages, which inevitably means other people are disadvantaged, and that is such a difficult position to be in” she said. “We call for allies to help us and support us, because those individuals have the power that other people don't have to influence change. Allies need support amongst other allies.”
An endemic issue
Dr Hussain discussed her recent co-authored paper on racism and palliative care, and the impact of the pandemic on the issue of inequalities. She also touched on her personal experiences to highlight how endemic inequalities are in our society.
“I remember going to the GP practice with my mum” she recalled. “She had six children. She didn't speak English very well, and was dismissed with “well, you've brought several children to one appointment and you're asking me different things about them”. But to get from our house to the GP practice cost a lot of money, and she would hold on to her own health issues until we all desperately needed to go.
“If I looked at what those GPs were documenting, you wouldn't have sensed inequality but you could sense that we were considered burdens. If I went in now as an articulate healthcare professional, able to give a clear history, I would get a different level of support.”
Throughout the conversation Dr Hussain highlighted a number of practical solutions to reduce inequality, and the discussion ended with a call to work more closely with communities.
“We cannot do nothing when we can see the impact that we're having on people who are non-white in terms of accessing good palliative and end of life care” Bleakley said. “Although we know we're very nice in hospice and palliative care, although we know that we're working extremely hard, we cannot allow this to continue because we're basically living in a pandemic of inequality.”
Dr Hussain added that diversity needed to increase at senior levels, and services need to be co-produced with people in the community – not just community leaders. “It's not a quick win” she said. “It's focusing the resources on the longer term strategy, rather than trying to do something so you can quickly tick a box.”