Dr John Smith: What to expect when you’re dying

What should we expect from end-of-life care, asks Dr John
What should we expect from end-of-life care, asks Dr John

Summer is here, the children are on holidays, hopefully most of us will slow down and relax.

That said I am not sure you will want to read on but I hope you will, because it will ultimately affect us all. Serious stuff.

Most health trusts and health commissioners are writing strategies and standards for end of life care. In other words how we ‘should’ be cared for in the last year of life.

I have seen some of these, they are written by professionals, well written and full of flow charts and tick boxes. They are good but in a very limited way and there is not a whiff of a patient or family member. In NHS speak they are called service users.

As far as I know I am not in the last year of my life, but if I were I would like to tell you how I would wish to be cared for. I bring with it my experience of being alongside many thousands of people who have died.

So let me begin at the beginning. I would like to know my life is coming to an end. I do not want to be assaulted with the truth but told gently and possibly over several meetings. I would hope they had found out what I thought was happening so nothing came as a surprise and I do not want to be told on my own. They will need to know what support I have, how close and how available it its.

There is always a need to discuss further treatment but I would appreciate being told what risks there are and what benefits there might be. I might not want a strong possibility of nasty side effects if my life expectancy will only increase by a month or two.

I have a bad habit of putting off things so being encouraged to put my house in order would be good. That isn’t just wills and things but important emotional work too. The need to say thank you, to forgive and be forgiven. I might need the hint to stop working and spend more time with family and friends, for we might be dying but we can still be quite active. I do not want to be left in the dark – what next will always be in the back of my mind.

If possible I would like my family doctor to care for me with the practice nurses. If not available, full information should be readily accessible. I do not want to wait for an appointment or be left hanging on. If I need to be visited at home I don’t want to feel as if I am asking for gold – I want skilled doctors and nurses available 24 hours a day.

I do not want to be asked where I would like to die and then find it is not possible. Nothing is impossible if the resources are there and I hope and pray they would be.

Finally, I do not want my carers to be afraid to talk about God and eternal life. Priest I may be, but I can still get frightened.

So there you have it. As the summer moves into autumn and winter comes, the hospices are working hard to make sure that the care we need will be available. It will be, it is no longer a dream.