It was great to be asked to contribute a piece to the latest edition of VIEW magazine which focuses entirely on palliative care. VIEW is a non-profit community media organisation that aims to “cover issues that have a major effect on society and get readers talking about them”. The edition includes interviews with Dr Kathryn Mannix, auther of bestselling book ‘With the end in mind‘ and US palliative care specialist Dr BJ Miller whose TED talk, drawing on his personal and professional experience, has been viewed almost 10 million times. There are also personal insights into palliative care from service users, as well as insightful pieces on many topics including dementia, out of hours nursing care, and fatigue.
Fatigue is an interesting symptom as it is one that is deeply gendered, being experienced more commonly by women, for whom it also sits within a life long social context of caring-related tiredness. It is also one of the least researched symptom, as the piece in VIEW by Michelle Barrett argues. Could these two facts be related……?!
A good segue into my piece as I was invited to contribute a discussion about gender and palliative care. As VIEW aims to provoke discussion, I started from the provocative position that, within palliative care, ” research, services and policy are currently orientated to meet the end of life needs of white, affluent, men”. I then drew on my lecture at the EAPC to explain how palliative care is biased against women, raising again the fact that it is men, not women, that have been found to benefit from early palliative care, and that men receive more CPR, more ICU admissions, and more chemotherapy of questionable benefit at end of life. This again raises the point I want to make sure everyone understands about investigating gender bias in palliative care, namely that it is not just a ‘women’s issue’. Men are also negatively impacted by gender norms, including at end of life, as are transgendered people, although I have witnessed very little discussion on this topic.
Ultimately, the way we live influences the way we die. This means that the power imbalances and social inequeties we live with are also those we die with. Far more attention needs to be paid within palliative care to these social determinants of end of life experience, of which gender is only one.