Calls to make it easier for patients to choose where they die
24 March, 2017 — By Tom Foot
Sally Gimson had an ‘almighty row’ with doctors in a bid to help her father die at home
PEOPLE are leaving bottled notes in their fridge to avoid confusion about how and where they want to die.
Councillors and NHS chiefs, discussing “end of life care” in Camden Town Hall on Monday night, heard about the message-in-a-bottle scheme – where patients place documentation about their end of life care wishes in a plastic container which is placed in the fridge for health carers to see.
The discussion focused on how to increase the numbers of residents who die in their “preferred place of death” and how white middle class people were much more likely to die where they wanted to. The cash-strapped council, which spends £2.4million on hospice care each year, is in the process of commissioning a new service.
Cllr Alison Kelly, chairwoman of the health scrutiny committee, asked palliative care teams about whether Camden residents were storing notes in fridges, adding jokingly: “Has anyone got one I can use?” Dr Caroline Stirling – a palliative care consultant, who works at the UCLH, Camden and Islington – said: “What you are referring to is a sign when you go into the door, and a bottle in the fridge, a plastic bottle, in which a piece of paper sits there, and you can write various things on it.”
She said the message-in-a-bottle system was not often relied upon in Camden and there was a focus on “empowering patients” to ensure families were aware of the information before a death.
But she added: “It is very easy to have an idea about where you want to die. But, as you get sicker and closer to the end of your life, that choice may be taken away from you. It’s quite a complex concept.”
Figures show 1,100 people died in Camden in 2015, with 28 per cent dying at home. Ms Stirling said that estimates are that around 60 per cent of people would want to die at home.
Cllr Kelly said: “What strikes me here is that if you are white and middle class, you are much more likely to die where you wanted to die. Once you have mental health difficulties, you don’t have English as your first language. All those barriers stop you dying where you want to die. This is an equalities issue.”
When people in palliative care are sent home from hospital or a care home to die in their home, district nurses are employed to help families through the process.
Cllr Sally Gimson told the meeting: “A lot relies on district nursing. “I see here we have two people [on duty] at night, which is probably more than the rest of the country, but it seems to me not many.” She told a story about how she had had an “almighty row” when she wanted her father to die at home and that his situation would have improved if doctors had known that he was in the last year of his life.
Conservative leader Cllr Claire Louise Leyland said there was a need during the new contract negotiations for “clearer data” on how many people were dying.