About Me: More than illness, drugs and acronyms
by Carol Bridge Member of Marie Curie's Expert Voices Group Carol joined Marie Curie’s Expert Voices Group as a way of sharing her experience of caring for her partner Diane for two years.
When Diane first got her pathology results, it was delivered in rushed and hushed tones by the surgeon and only once I had asked for them. All that had been discussed before then was saving as much breast tissue as possible; after all she was young, so no need to remove her breasts, although that was what she wanted. This approach continued throughout the remaining 26 months of her life, apart from the last nine days in the hospice. From that moment on, her illness, diagnosis and prognosis were mainly how she was identified; she became just her chart and test results. These could only tell part of the story – they could not say when she did not understand something; that she liked warm milk with her medication; that she did not have the energy to put on her socks; that she was scared of being on her own. This lack of thought for Diane as a person showed itself in many ways. Her issues were dismissed as just side effects. Health professionals spoke across her because they did not take the time to understand that although she could no longer speak, she could still think clearly. It felt like getting the box on the consent form ticked was more important than the fact that she was struggling to ask for a cup of tea. Language was often used to hide behind, making it hard to manage our expectations. When we met the GP for the first time, we had no idea he was referring Diane for palliative care. The first thing we knew about it was when we had a stranger on our sofa asking her where she wanted to die. There were some exceptions. There was the oncologist who always asked Diane if she had her lucky red pants on; the hospice where giving her ice cream at 3am if she wanted was as important as managing her hallucinations. Good care that is ‘About Me’ is when you’re asked how you feel, and about what is taking its toll on you. It’s about health professionals knowing what you worry about the most; who and what is important to you. It’s about listening and having the conversation that has been asked for. This is why I am supporting About Me. It states the obvious – that care is about a unique individual – a whole person to whom life is more than illness, drugs, and acronyms. I want people to feel empowered to speak up about what they want. And I want professionals not to assume that they know all about the people they treat just by reading a computer printout. We'd like to hear your stories, whether they're good or bad. Find out more on our About Me pages or comment on this post.