Several of us are fortunate enough to be joining the over 3,000 palliative care researchers and practioners meeting next week in Berlin for the European Association of Palliative Care Conference. In this blog Merryn discusses the plenary she will be delivering.
Being asked to talk on the topic ‘Is palliative care biased’ felt like a mixed blessing. On the one hand, very exciting as it meant I got to talk about an issue I have been passionate about for a very long time, namely equity within palliative care. On the other hand, slightly overwhelming because – as one colleague so eloquently put it – ‘where the hell do you start?’
I decided to start with gender for several reasons. Firstly, there has been a systematic and largely unconscious neglect of gender in palliative care research, practice and policy. Secondly, there is significant evidence that gender influences end of life preferences, experiences and care. And finally, gender determines how we are treated at the end of life. The social situations of older women are often different to those of older men. Which, I will argue and demonstrate with examples, must be recognized if palliative care is to be effective for everybody. Also, focusing on gender is a first step in raising awareness about the intersectionality of social constructs – such as ethnicity, sexual orientation and socio-economic status – and their pertinence to palliative care.
When I started reviewing the literature I was not surprised to find little explicitly referring to gender as we published a systematic review a few years ago which had come to this conclusion1. However, what I was surprised by was how pervasive the influence of gender on end of life experience is. I found evidence that your gender determines:
- when you are diagnosed with of a life limiting illness,
- your pain management,
- the ‘choices’ you make during Advance Care Planning,
- the extent of medical intervention received at end of life,
- your experience of palliative care, and
- where you die.
I also found that the gendered nature of end of life circumstances not only disadvantages women, but men as well. I will clearly show that gender is a topic relevant to all palliative care researchers – whether you work in a lab or in ICU – whether you are a drug triallist or a qualitative researcher.
Essentially, my presentation will be a call to attend to gender as a social determinant of dying in all our thinking about palliative care. I will argue that we need to reach beyond biology to consider men and women’s life conditions, lifestyles and positions in society, as well as societal expectations about ‘femininity’ and ‘masculinity’. This prompts us to think beyond health services and ask questions such as “What impact do the significantly higher levels of poverty among older women when compared with older men have upon their end of life choices?” Because, as I remember one research participant saying to me as she cast her eye ever her threadbare carpet and fire she couldn’t afford to light – “my house is not a nice place to live, let alone a nice place to die”.
1 Morgan, T., Ann Williams, L., Trussardi, G., & Gott, M. (2016). Gender and family caregiving at the end-of-life in the context of old age: A systematic review. Palliative medicine, 30(7), 616-624.