When ‘i’ is replaced by ‘we’
Even ‘illness’ becomes ‘wellness’
I am writing this article to inform people living with dementia and their loved ones about the difference between palliative and end of life (or terminal) care. When supporting people, I hear talk of palliative care as “the end of the road” when it is not normally so…it is actually about discussing how you would like to live the rest of your life in your way once you have been diagnosed with a life limiting disease or illness, one from which no cure can be anticipated – such as dementia.
Palliative care is about providing comfort and support for the person with an illness or disease that can no longer be cured. The aim of palliative care is to maximise the quality of the person’s life – this includes physical, emotional, social and spiritual needs.
So, the next question is – “Am I/ Is my family member going to die very soon?”
People often confuse the term ‘palliative’ with ‘terminal’ (or end of life) care. When a person is in the terminal phase of an illness they are expected to die within days or weeks. People who require palliative care often live for months and sometimes years.
When a person is diagnosed with dementia, I would suggest a palliative care, (or as I choose to name it “Life Choices”) meeting be arranged between the person with the illness or disease, their family, and supportive partners – be it GP’s, specialists, therapists or any other person that the person with the illness or disease would like involved with this phase of their life.
The aim is to identify clear goals of care and support, including a review of any advance care plans that have been made. This meeting provides a safe environment where issues and questions about end of life care can be raised and appropriate strategies agreed upon, and also ideas can be discussed about how to live the rest of life well.
Once the initial meeting has been planned and actions have been put in place, this does not set these actions in stone – you have the choice to change anything – please have more than one meeting to ensure your goals are still being met. I would love to see people take advantage of these meetings as often as needed to ensure that the quality of life of the person with the disease or illness is being maintained to the highest level.
To discuss how to plan a Life Choices meeting, please contact me