Claire Rayner, who honored us by accepting the 2001 HealthWatch Award at the 1st November AGM, has picked up a few ideas in some fifty plus years of working in and around the NHS. It occurs to her that a question rarely asked is 'What are patients for?' In her presentation she entertained those present with her own answers to this question.
From whose point of view are we to look for the answer? That of the patient? Or that of the doctor? Or, since we have a highly politicised NHS, that of the politician? Clearly, it will have to be from all three. And I shall begin with that of the patient.
The most pressing is of course:
Curing: Above all else we seek relief from our symptoms and the banishment of fear of future symptoms. There are some unfortunate people, however, who have a desperate need for the attention of doctors and who are happiest when they have a few (preferably not too disagreeable) symptoms of sufficient medical interest to keep doctors hovering at their sides. These are the ones who want most of all:
Looking after while being cured: Regression into a state of juvenile dependency is a common part of being ill, be it physically or mentally. So, we need to have someone who makes us feel safe and cared for well within reach all through the illness stage and afterwards too if we can get it. Meeting your doctor in the supermarket and having him say, "And how's the old trouble then?" makes you feel important and valued, unless of course the old trouble is something mildly embarrassing like an addiction to masturbating while wearing scarlet panties.
One reason for wanting the doctor there during illness is to be:
Listened to at a time of stress: human beings have a deep need to talk about it, to anyone and indeed everyone who will listen, as anyone who has ever worked in an A & E department knows well. But it is not only after trauma that this need exists. Those who live in constant pain or discomfort need others to know how much they suffer. They may in consequence be shunned by their nearest and dearest, which means that finding someone else to listen to necessary outpourings of distress becomes very important indeed.
A caveat must be entered for some patients: the inarticulate, those who are overawed by doctors and those who simply don't have the language with which to express their needs for a listener. They are the patients who reckon their medical attendants are for:
Being psychic: some patients don't give you vital information about themselves and their condition, but instead look at you trustingly, sure that you will understand anyway and know exactly what they mean when they respond to your question about their pain by telling you it started in the middle of Mary's wedding reception.
And as if listening to patients wasn't enough for a busy practitioner, patients also believe that they are for:
Explaining to: how some clinicians must yearn for those fabled days when a doctor could pat a patient's shoulder or head and say; "Don't you worry your head about any of this, we're here to do the worrying and the thinking, you're here to hrrmph...get better." Well, those days are indeed long gone and not a moment too soon from a patient's point of view. We want to know, in every detail, what our symptoms mean, what signs you have observed in examining us and what they mean, what the latest treatment is for our condition, its safety rate, its failure rate and all other available evidence for its efficacy. And even those of us who are totally unable to comprehend such things as risk /benefit ratios (after all many of us buy a lottery ticket at fourteen million to one odds every week) we still want to be told. And told over and over again in order to take it in properly.
For being encouraged: being ill and getting over it does take a certain amount of patient as well as medical effort. They want - indeed, need - their doctors and other attendants to tell them at frequent intervals how well they are doing, how brave they are being, how hard they are trying, how patient and sensible they are, with always the underlying implication that this patient is and always will be the doctor's all time favourite. There is a particular group which needs this encouragement badly, wanting:
To be cared for however unlovable: as a young nurse the hardest lesson I had to learn was how to show all patients equal concern and interest, even the ones who stank, who coughed and spat revoltingly, who were triply incontinent (triply inasmuch as they always seemed to produce their most malodorous releases of flatus when I was tending to them) and who had eyes that were full of greenish exudates. I also had to learn how not to retch when they vomited or when they coughed and spat. Only those of us who have had need of this medical/nursing ability to dissemble can know how important it is. And now, to go from the truly sublime to the very irritating indeed, patients are for:
Requiring signatures on passport applications and similar extremely annoying trivia: There are GPs I have heard of who demand sizeable fees for appending their scribbles to the backs of ghastly passport photos and suchlike and I can't blame them. But I beg you not to blame the patients who make the requests. Attack instead the bureaucracy that demands it.
There is another thing that patients believe that they are for, and it is one that exercises greatly the minds of many of us. We are for:
Escorting through death: I, like a great many other patients, would like to be sure that all medical staff at all levels would, when the time comes for the inevitable ending of a life, make every effort to provide supportive, dignity-protecting and genuine care. Sadly, all too often hospital-based medics step back, leaving it to the family to cope with what time a GP has to spare them and, if they are lucky, the care of a specialist nurse. Old people tend to be the most neglected in this way, in my experience. Though I have at this point to express a deep and undying gratitude to a geriatrician who recently treated an elderly relative. He saw him at home at frequent intervals as well as in hospital, and continued to care for him, even though there was no doubt that that his death was inevitable. There is a great deal that can be done for a patient even after a disease process has triumphed and is galloping full tilt for the finish, and he did it. Of course, this geriatrician did what all patients want all of their carers to do at all times because patients are for:
Being kind to: There is not the least doubt in my mind that a doctor or other health worker could get away with literally murder, as long as he or she did it with kindness, warmth and an air of sympathy. Dr Shipman had many patients who even after he was found out commented on what a nice kind chap he had always been. And many are the so-called alternative practitioners who offer nonsensical nostra and pseudo-scientific chatter and then pocket comfortable sums and get away with it on account of being "ever so kind". Patients given even the most skimmed a portion of the milk of human kindness will forgive almost anything.
There, then, are the ten things patients think they are for. We must now turn the mirror the other way and look to see what doctors think patients are for.
So, as far as doctors are concerned, patients are for:
Curing the patients' reasons for wanting this are obvious. What are clinicians'?
Well, one has to assume that it was what he or she came into the profession to do. It must come as a shock to those eager students when they are told by their teachers at the start of their careers that cure is a word to be used very sparingly. Speak of giving relief, speak of amelioration, speak of repairs, but be very, very careful about discussing cures - they are few and far between and if you offer one and can't deliver patients will never forgive you. And the next one?
Being grateful: Having someone look at you with swimming eyes filled with something akin to worship because you've done a competent job, as you were trained to do, can be embarrassing at one level, but deeply, gloriously satisfying on another.
Nurses get a very large dollop of gratitude if they do their job even half well. I had a letter only last week from a middle aged woman I had nursed when she was a child back in the fifties. I confess to having no memory of her at all but she listed all sorts of things about her memories of me that made my day. Indeed, I think perhaps it's made my year.
Those are the lofty uses for patients, now its time for the mundane. They are for:
Making a living: This one is not as high on the list in the UK as it is elsewhere, notably in the USA. I have met a great many US doctors and they have all been, without exception, extremely comfortably off merging into downright rich. Swimming pools to die for. On both sides of the Atlantic, this use of patients moves on to another level when it is time to use them for:
Building a career. A modest living can be made in the UK with the most basic of medical qualifications and top-up education of the sort now demanded, but if you really want to Get On, papers are required. Published Papers.
Often, of course, patients are for:
Providing teaching material: Medicine is an art and craft as much as a science, because the objects of the practice of medicine are sentient human beings; all of them different, all with assortments of symptoms instead of nice tidy syndromes, all with their own special complications of gender, age, race, social class, degree of poverty and all the other imponderables that go to make us all so fascinating. The only way a doctor or a nurse or a physio or any other therapist can learn their job is by putting their hands on people and using their own eyes to look at them, their own ears to hear them and, a sometimes neglected but in my experience very important aid, their own noses to smell them. This use of the honest-to-goodness ailing person leads on to another. Patients are for:
Being research animals: A rather odd looking doctor used to come sometimes to the men's medical ward at the Royal Northern Hospital where I trained as a nurse in the fifties and ponder over those of our patients who had carcinomatosis and were there waiting to die, and to some of them he would administer some muddy brown liquid from a bottle he carried in his hip pocket.
He had this crazy notion, sister told us with a sniff, that it might be possible to treat cancer with drugs. We thought he was barmy. I stopped him one day and asked him what he was doing.
"Experimenting on 'em." he said, with commendable directness. "Is that right when they're so ill?" I asked. He clearly thought I was the one who was barmy. "What possible use are they to anyone else but me in that state?" he said and left me gaping. Next day I was transferred to theatres, I remember, and glad to get there.
I do not suggest that researchers are quite so cavalier these days. But I do know that medicine and its practitioners still need to use human beings for research as they set about their vital business of pushing forward the frontiers of medicine. One problem with research is of course that it is even more likely, if badly organised, than other forms of medical practice to lead to one of the most unpleasant uses of patients:
For being sued by on the whole, British patients are not particularly litigious, usually wanting simply an explanation, an assurance it won't happen again to any other patient and an apology when things go wrong. Evidence shows, however, that some of us are looking more sharply across the Atlantic than usual, especially now the legal concept of fighting a case on a "no-win, no-fee" basis has arrived here.
In case you feel I am being too cynical, do let me agree that one of the most important uses of a patient from the point of view of good, caring, well-balanced and well-disposed clinicians is as an:
Object of altruism. To this day many people - and I here include patients as well as doctors and all other health workers - feel a deep and genuine drive to take care of others, to minister to their needs to relieve pain and misery of all possible kinds, to do what Florence Nightingale, now slowly toppling off her pedestal, once described as the core of nursing. To comfort always. I have to admit, however, that altruism may come mixed with other motives. One of them may be the need to find a way of:
Escaping from real life Hospitals, surgeries, operating theatres and clinics are intensely exciting and romantic and diverting places when they're not being exhausting, disgusting, dangerous, frightening and sickening, that is. For people who lack the social skills needed to build satisfying personal relationships, being with colleagues and, above all, patients can be very comforting. Patients ask a lot of you, of course, but not as much as a lover or a child of your own might demand. I have to say I have met many nurses and doctors and others during my many years hanging around hospitals who fit into that category all too neatly.
There remains one final use of patients by doctors in particular and it is one that was expressed most neatly by a surgeon I knew well, for whose theatre cases I regularly acted as scrub nurse. He was MacNeill Love and he would tell each new houseman the same thing on his first day.
"Young man, a surgeon's career is in three stages. The first is to get on. The second is to get honour. And the third is to get honest."
I end by offering you, as I promised I would, the Politician's answer to the question "What Are Patients For?" I will list them while making no attempt to qualify them in any way. I rather doubt I need to. You will know the detail perfectly well:
For winning votes
For losing votes
For lying to (about waiting lists, quality control - "of course we don't allow post code prescribing" - and practically everything else
For appearing to spend money on while doing nothing of the sort
For counting and recounting in order to obfuscate true facts (see "for lying to" above)
For whipping the opposition at all times
For blaming ("you dare to ask doctors for antibiotics, you miss your appointments, you use the Internet!") and being the cause of all NHS problems in general
For sucking up to come election time