Something wicked this way comes : getting shut of the "crumble"

No more of this on the NHS

The recent publicity surrounding a patient’s “right” to die at home has left experienced family doctors perplexed. What is going on? A myth has grow-up that so called “terminal care”, sorry, sorry, “continuing care” is a mystical science that can only be practised in hospices by Macmillan nurses.

One of the most fundamental roles of the family doctor is to care for dying patients in the home environment. All the older partners in my practice are highly experienced in this task, aided by our excellent team of district nurses. As I have said many times before, the pure physical medical side of terminal care is rarely challenging. The mental and emotional side is very challenging and, as I get older, I find it more and more of a strain. (see Removing death from Life)

God, how I hate hospices. How I hate palliative care doctors. How, in particular, I hate Macmillan nurses.

I am not being provocative. I yield to none in my admiration for the late, great Dame Cicely Saunders. As I have said before, I put her up there with Semmelweiss. She devoted her life to showing us how to treat the discomfort of dying pre-emptively. Semmelweiss taught us to wash our hands before doing vaginal examinations. We learnt both lessons. They are obvious now as, in retrospect, was the development of the wheel.

I still truly hate the whole of the terminal care industry brigade but not perhaps in the way you may think. You see, I hate death and, even more, I hate the process of death. I hate dying. It is a wretched bloody business. I hate the way hospices, and the palliative care doctors and the Macmillan nurses steal death from life. They attempt to pretty up the process of dying into some sort of clap-happy learning experience, there to be shared by all the family. I had lunch with a good friend yesterday who told me that his father in law threw a Macmillan nurse out of the house after her appalling opening gambit on her first visit of “How do you feel about dying”. What a question! What an arsehole!

Hospices are a last resort for people who have no family and for the few (very few in my practice) who cannot be managed at home. God preserve me from this, written by a patient dying in a hospice:

Now I am looking out of the window at a beautiful, little, vaguely Japanese, garden belonging to the hospice with squirrels and gulls. It has been snowing. Some day. Somewhere along the way I acquired a morphine driver pump (*), a handfull of pills a day and fulltime oxygen mask. I haven’t an idea how I got here, really. I’m not sure who I am, but I think, someone different. This has been the most difficult few paragraphs I have ever written bar none ever, despite not having any emotional content.

Some may recognise the writing. I have quoted it before. The same writer, a few weeks before her death, wrote of the unreal world of the hospice:

In the hospice a patient would have to be much worse than just badly behaved to get any opprobrium. Probably to provoke the staff a patient would have to be doing something harmful to another patient. And maybe in extreme cases not even then. Your status as a responsible adult is held in suspense. It isn’t fully revoked but it isn’t in place either. The relationship between the carers, helpers and domestics and the patients is odd. Not odd as in being unexplicable, but odd as in being outside of the norm of everyday life.

As many will know, the writer was the late Christian Jago, and all that she wrote is still preserved at auspicious dragon. You can keep your squirrels and your gulls and your Japanese gardens. I don’t want any of it, and I do not think Christian did either. I try to protect my patients from the worst of this nonsense.

The government is now trading on your deepest, darkest emotions and fears. So many wish to buy into the Macmillan nurse myth to protect themselves from the horror of dying. You think the government is talking about better home care for cancer patients. I am all in favour of that, but that is not what this is about.  The media has also been taken in. It too believes the government is talking about cancer care. See today’s spread in the Times. I warn you now that the government has a hidden agenda in announcing its recent policy statements about your “right” to die at home.

The real but hidden agenda is ominous. It is about cost cutting. About further reductions in NHS care. The government is marching fraudulently under the banner of cancer care. This is not about cancer care. This is about kicking granny out of hospital. It is about the large number of old, frail people with multiple medical diagnoses; a bit of prostate cancer; a bit of breast cancer; a bit of COPD; a bit of arthritis; a bit of heart failure; a bit of dementia; the residual weakness and slurred speech of an old stroke and so on and so forth. These people are all dying. They can be kept comfortable (if they are lucky) but they are beyond medical salvage. These people are “cluttering up” medical wards, surgical wards, and orthopaedic wards. Because they do not have precise single diagnoses like “bowel cancer” the hospices show little interest and even if they did, they do not have the beds. So instead, too ill to go home, too ill for a nursing home (even if there were a bed available) they are kept in hospital, always at the far end of the ward, as far as possible from the nursing station. If your relative is in hospital you can tell when the doctors and nurses have lost interest. Interest in a patient is proportional to the reciprocal of the distance of the bed from the nursing station. Hospital doctors call these patients “crumble”. They are all in God’s waiting room.

We used to call it “crumble” when I was a hospital doctor. “Crumble” is a derogatory word for a group of patients who have nothing acutely wrong with them, but not much right with them either. (source)

The government hates them. They are bed blockers. They are expensive. They are stopping the hospitals from hitting targets. We have an ageing population. With each day, their numbers grow larger. These are the people who are going to be given the “right” to die at home. Indeed, soon it will be their duty to die at home. The government is going to turf them out of hospital to free up medical beds. Doesn’t matter if they cannot walk and are faecally incontinent, they must have their “right” to die at home. These patients are “terminally ill” but not in the way the media understands. Too ill for nursing homes, these poor people still need round the clock nursing care, often for months on end. Nursing care that their elderly relatives cannot provide at home. Soon they will be sent home with a care “package” – a nursing auxiliary popping in for four hours a week.

You have been warned.