Hype, HSMR and What’s killing my cat?
Minnie is nineteen, which is pretty old for a cat, and she is dying.
The interesting question is what is she going to die of? For a while the things which threatened her life were the bad breath and the snoring. To explain this, after 19 years together Minnie and I are close. Since the feline equivalent of Alzheimer’s set in several years ago she needs to know where I am all the time, so the only way for the family to get a quiet night’s sleep is for Minnie to sleep right beside my head.
When the snoring started, a few nights of sleep deprivation (mine) convinced me that she was really ill. When she went off her food that clinched it, she had to go to the vet. Minnie came pretty close to death that day. The vet suspected kidney failure, as the cause of her weight loss and bad breath, and a nasal tumour as the cause of the blocked nose. This was in addition to the Alzheimer’s, the arthritis, the deafness, the loss of appetite, the failing eyesight, and the general frailty of extreme old age. We skirted round the option of putting her down then and there, but came down on the side of trying antibiotics.
For the next few days she seemed a very sick old lady. The pills had to go in wrapped in prawns and cream cheese, and then with a lot of coaxing the appetite began to come back. This was all temporary. Within days the nose was blocked again and the nosebleeds started. The snoring got so bad that we had to shut her in a separate room at night. Despite all of this she seemed a little stronger so we went back to the vet.
The nose bleeds confirmed the nasal tumour. “They can live for years like that”. The vet said cheerfully. “It will be a matter of how long you can stand the snoring”. We decided to try another course of antibiotics, and follow it up with steroids if needs be.
There were a bad couple of days when she just slept, scarcely breathing, and she would not touch food. I thought she was peacefully drifting away, then she woke up hungry and worked her way through several bowls of prawns. Just at the moment she seems stronger every day.
She is dying, we can be certain of that, we just can’t be certain when that will be or what it is that will kill her. When you get to that sort of age, and are suffering from such a complex mix of illnesses the dividing line between life and death is a fine one. It only takes something very small to tip the balance either way. I suspect that if she loses interest in the prawns she will just go downhill fast, and will be dead within days.
The complex causes of death in extreme old age are currently rather important in Stafford. We have just gone through a traumatic couple of months of being told repeatedly that hundreds of people may have died unnecessarily in the Hospital. It has set sections of the community against each other in a dramatic way. Stress levels amongst the staff are sky high, and lots of people are understandably anxious about the prospect of having to use the hospital. Beyond that people are really puzzled. If there were so many unexpected deaths, wouldn’t someone have noticed? Why did no one say anything? Just exactly how bad does the care have to be to cause death on that sort of scale?
What truly happened in the hospital is likely to have been something much more subtle. David Colin- Thome, The author of one of the two authoritative reports on what happened at the hospital has talked about this. “HSMR data has featured prominently in the Mid Staffordshire investigation and prompted much ill informed speculation and comment as to suppose excess deaths at the hospital”. At this point we are back to the question of what is killing my cat. HSMR is short for Hospital Standardised Mortality Rate. It is a new and relatively untried statistical measure which aims to provide an early warning system, an indicator when more people in a hospital are dying than might reasonably be expected. It is not an exact science!
It is obvious that you cannot do a straight comparison of the percentage of deaths between one hospital and another. This would not be a fair measure because different hospitals work with different types of caseloads. The “standardisation” is an attempt to factor in key variables so that you can arrive at a measure that can be compared. The key variables include age, sex, social class medical conditions and something crucial called the co-morbidity factor.
If we go back to Minnie, The reason for going to the vet was the cold in the head and the snoring. Neither of these should kill her. When she dies it will be as a result of all the other underlying conditions, and as a result of her extreme old age. These together are the co-morbidity factors. In Stafford Hospital over the period of 2005-2007 these co-morbidity factors were not being coded properly into the cause of death, with the result that an alarmingly high but false HSMR of 127 was given. This was the figure that was used to guess the figure of 400 “excess deaths”, It was only ever a guess. The statistical base for it is very poor, but it has been constantly repeated by the press caught up in the drama, even in the face of contradiction from well informed experts.
The truth of the matter is that we simply cannot know for certain how many people may have died. For those who have understood the statistical elements of the reports it is clear that this could be a handful, and that it is conceivable but very unlikely that it could be as high as 400. The process of reviewing individual cases, which is now getting underway will give a better idea, but we are really talking about a form of archaeology. Trying to interpret what might have happened from imperfect case notes and imperfect memories. You will see from what I have said about Minnie, that the line between staying alive a little longer and dying now is often a very fine line indeed.
The way in which the coding was being done has been overhauled, and is now being done accurately. The current HSMR is 88 which indicates that less people are dying in Stafford Hospital than would be expected. This is something that I want people to know because I think it would re-assure the people of Stafford.
Statistics are only of course a part of the story, We also need to look at the quality of care. If trying to find a reliable way of measuring excess deaths is difficult, trying to find a reliable way of measuring quality is much more so. Attempts are being made to do this, – but it is contentious. It is probably always going to come down largely to “what people see”. We can ask patients and relatives to report their experience. Comment, complain or commend. This is a useful starting point, but it is by definition subjective. People see what they are looking for, and at the moment lots of people are looking for problems. We may find that people viewing the same set of circumstances in two different hospitals will interpret them quite differently.
We may have difficulty with objectively measuring quality, but we can sometimes recognise it when we see it. A very high quality of care can probably have the effect of keeping people alive who might otherwise die.
If we go back to Minnie, she is alive now because she has had love and attention, and because I have taken the trouble to coax her to eat her prawns. Maybe it has only given her a few more days or weeks, but it has made a temporary difference.
I believe there are real things that can be done to make the rapidly increasing numbers of very frail elderly people more comfortable during the course of their last illness. These may prolong their life, or sometimes they may actually shorten it.
It may be, as Professor Alberti has suggested, that hospital is not necessarily the best place for this to happen. How we as a society deal with this is something that does need serious consideration. It is also, inevitably going to need serious funding. So far no one is publically asking the question of how this should be done. Is palliative care out of the hospital setting a matter for the taxpayer, or the individual?
These are all things that need our calm consideration. In Stafford we are more likely to reach the necessary point of calm if we understand that the alarming figures that we have been bombarded with are to a large extent exited media hype based on ill-informed speculation and imperfect statistics.
Postscript. Minnie lived for another two months, going through some good days and quite a few bad days. She became increasingly dependent and less and less steady on her feet. My hopes that she might die naturally were not met. She lost her sight, suddenly and completely, leaving her blind, deaf and confused. She was only relaxed when she was sitting on me and had the comfort of touch. I took the only choice I could and asked the vet to put her to sleep. The vet diagnosed detached retinas, which would have been caused by high blood pressure related to the kidney failure. Personally I blame the prawns.