My dad died of cancer 5 years ago. He made the decision to spend his last four months in a familiar place surrounded by those he loved at home. I will be forever grateful to the NHS for supporting his decision and the care they gave him.
One of my best memories from that difficult time was one evening when my sisters and I played our favourite songs from his music collection to him. We drank late into the night listening to Midnight Train to Georgia, La mer and Eternal Flame; although he couldn’t speak much anymore he was still able to smile and even laugh a little before the pain got too much. It wouldn’t have been impossible but very unlikely to happen in a hospital even if we could sing and were less drunk.
Little did we know that this was his right under the NHS Constitution:
You have the right to be involved in planning and making decisions about your health and care with your care provider or providers, including your end of life care, and to be given information and support to enable you to do this. Where appropriate, this right includes your family and carers. This includes being given the chance to manage your own care and treatment.The NHS Constitution for England – GOV.UK (www.gov.uk)
The care he received was a great interpretation and implementation of the spirit of the constitution. He was provided with a proper bed and had nurses visit regularly, his last days were as good as they could have been. The Trust he was seen under had the inclination and resources to support his final wishes.
Ultimately he donated his body to medical science and I now work for the Trust that took his body. I am not sure that these outcomes are directly related to his care but they are not unrelated. It is difficult measure the value of patient centred care in anything other than emotional human terms. For our family it was priceless and we will do our best to give back to the NHS for the rest of our lives.
Prior to this my feeling about medical care was that it was something that was done to me rather than something I participated in. I have spent much time with ageing relatives in various hospitals and the quote below is a thoughtful reflection from a doctor about the patient experience that made me cry:
To be made helpless before my time, to be made ignorant when I want to know, to be made to sit when I wish to stand, to be alone when I need to hold my wife’s hand, to eat what I do not wish to eat, to be named what I do not wish to be named, to be told when I wish to be asked, to be awoken when I wish to sleep.Donald M. Berwick (What ‘Patient-Centered’ Should Mean: Confessions Of An Extremist)
That there is a framework that enables doctors and nurses to be human rather than efficient but ineffective automatons gives me hope. Long live the constitution let’s protect, evolve and disseminate.