10 Forsythia Grove
CORSETTSHIRE ZY6 4GT
May 7 2000
My Dear Ralph and Harriet
My apologies, dears, for sending this to you via carbon copy. I know it is months since I last penned a missive – owing to prostrating endeavours on both the horticultural, and home care, fronts (albeit in different ways) – and so I have inserted an inked-blue ‘leaf’ beneath my writing page. I do feel faintly guilty about the duplicate method of correspondence, I must say, owing to feelings of boundless irritation when someone sends me a Christmas ’round robin.’ I myself always bin these . . .
It is some of my recent experiences with home care that I feel moved to discuss here. There are occasions when one is called upon to care for critically ill people in the community. These are not necessarily individuals with cancer; sometimes they are people with progressive, long-term, conditions who may experience a crisis in their conditions. They may spend time in hospital and then, for one reason or another, spend some months in bed. They may live or they may die. No-one knows and I feel that no-one should presume: either way.
There is still, to my mind, a far too hasty tendency to assign such people to the ‘palliative care’ mode of treatment and care. They may, after all, recover given time – and a chance! But, no, should a doctor attend and comment that the person has ‘end stage’ disease, a whole destructive steamroller of ‘care’ actions can be set into motion. The principal one is that community nurses may arrive and suggest that morphine – either as a liquid cordial or via syringe driver – be given “for the pain.” What pain? It is admittedly true that someone who has spent months in bed is going to be excruciatingly sore and stiff – when rolled from side to side – but this is an entirely different to the grinding, boring into you, sort of pain that accompanies toothache or bone cancer. Morphine – even at a dosage of 5mg/2.5ml – delivers a blow to consciousness equivalent to being hit over the head with a heavy lead cosh – and puts the unfortunate person into a state where they are simply unable to even ask for food and drink. And who can recover when food and drink is denied in this way?
I feel that insufficient thinking is going on in the heads of all concerned here. And I have recently felt prompted to make remonstrations on behalf of individuals in receipt of what appears to be ‘check list’ care. I hope that, in the future, a clause will be inserted into ‘end-of-life care’ regulations which protects such people and which states, in effect, that ‘where the outcome – life or death – is unknown, then all decisions should be made which follow the direction of Life.’
I have heard that the formation of a body called NICE (National Institute for Care Excellence) has been mooted. Maybe, by the end of 2015, they will have published new ‘end-of-life care’ regulations which will put such protection into place. But – even then – will the doctors, nurses, physios, OT’s, and care staff out in the community even read them?
In a way pets, this wasn’t even what I sat down to write about. I was going to talk about what a privilege it is to touch the skin – and perform the most intimate of tasks – for the person who is cared for in bed. And how one’s own skin sings with the compassion that such work requires. The work of a community health care assistant is skilled, responsible, and difficult. We not only perform the care of intact skin, we wash and feed and administer drinks and medicines. We handle all manner of excreted fluids. We regulate a person’s body temperature – opening windows/fitting bed socks. We occupy them with the radio and read them poems and stories. We act as advocates, representing what seem to be their needs and best interests to our employers.
And when, at night, they shout ‘help – help – help -‘ continuously, in their distress, we are the ones who soothe and distract them. We hold their hands and kiss their foreheads as we leave.
This work merits all our respect.