Leonardo Da Vinci Pilot Projects (2001 - 2004) – True Stories

Care and/or Cure:

The Role Of The Services And Operators

Transcription of a contribution by Dr. Franco Rotelli

September 27, 1999

Hello everyone. Obviously when the issues are too general there is the risk of the discussion becoming merely generic. So, I feel a bit awkward because I too will be a bit generic.

However, I hope that I can contribute towards the discussion… or the comparison among the various points of view.

The issue is also provocative, in the sense that: care and/or cure presents a dichotomy, immediately creates a distinction between the two things, as if curing doesn’t also mean care, and care shouldn’t also have curing as its goal.

At the same time it recognises an issue, and that is that care and cure are, in effect, two different things.

Curing is something that is strictly connected with medical knowledge, with a concept of illness. It is strictly connected with the idea of something that has to be removed, something which, hopefully, someone must be cured of.

Instead, the word ‘care’ does not allude directly or necessarily to this. In Italian, the word ‘care’ is used in many ways: to look after a child’s education, to take care … of one’s family, of one’s affairs, a business, a home. The word ‘care’, based on its etymology, refers to a concern for… taking responsibility for… having a positive concern with respect to something, that something is looked after and taken care of.

Therefore, it doesn’t immediately identify some damage, some lesion to be removed. It identifies a complex and positive action for … producing or reproducing the positive condition of something.

In health care organisations, in the health care services, the concept of care has definitely become something which is incomprehensible or non-existent or, on the contrary, something which is reductively an element in a process which, yes … is the right one … which is in accordance with the real aim of health care, that of healing.

The word ‘care’ is either functional to the word ‘cure’, or it has no meaning in health care organisations as they are structured today, yesterday and probably tomorrow.

I think that the people who placed the emphasis in this Course on these two words in terms that are to some degree antithetical, wished to present precisely this concern, the issue whether in the health care system the word ‘care’ should be once again given its full meaning, or whether it should continue to remain an element subordinated to the concept of curing.

A subsidiary and ancillary issue like the issue of care within medical knowledge must be re-examined, because there exists a reasonable doubt that for the word ‘care’ to be merely a ‘handmaiden’ to the dominant concept of ‘cure’, in some way involves what is done within the organisation of health care in general. And we know what this is: it is always something ancillary, servile with respect to the real power, which in the organisation of health care is : medical power.

And thus, if the entire health care organisation must in some way be ancillary, servile and functional to the luminosity of medical power, of medical knowledge, care will also be either functional or servile to cure – the physician’s sovereign activity – or it will have no other reason for being in the area of health care…

I think the organisers of this Course in some way wished to say: wait a minute, maybe it’s time – and not just as of today, but there’s still time – to reflect on the fact that not everything must necessarily be ancillary to medical power/knowledge in the organisation of health care, that there exist a myriad of other things to do which are and should not necessarily be ancillary to medical power/knowledge.

We must therefore reflect on what might or must not be servile with respect to this. What might and must not be servile with respect to this?

I think that obviously we are introducing a concept which is desirable and expected, something which we desire that the health care organisation do and which, as a concept, involves getting into a lot of trouble …. In other words, I believe that if we begin to follow this path, and begin to examine these issues in depth, we’re entering into an area which is potentially going to get us into a lot of trouble.

The first problem is that if we step outside of the concept of curing as the principal theology… the principal finality of everything we do, we risk getting lost. That is, we risk entering into an unlimited area where we no longer know what the boundaries of our role are, the boundaries of our activities, of what we expect of ourselves and of what we reasonably commit ourselves to performing.

And this is a fatal risk. Now, why should we take such a risk? Who wants us to do this? In the name of what? This question: ‘In the name of what?’ probably derives from an interpretation or understanding of what is happening. We are essentially being asked to reinterpret what is taking place around us and to try to understand what exactly we are dealing with.

What are we dealing with? We are dealing with a reality which … well, let’s take Trieste as an example, because it’s fairly representative of what’s happening elsewhere. A city with 240-250,000 inhabitants: what are we dealing with? We are dealing with, for example, 11,000 diabetics, a disease which is incurable. We are dealing with 1000-1500 people who are dependent on illegal substances. We are dealing with 2-3000 people with major psychiatric pathologies. We are dealing with around 700 people suffering from incurable tumours. We are dealing with 3,000 people living in rest homes, the vast majority of whom are there because not considered to be self-sufficient. We are dealing with costs of around 21 billion ITL [10 million Euro] for people who die in hospital. We are dealing with a situation in which there are about 17,000 hospitalisations annually for people over 75, hospitalisations which, already at the time of admission, are considered ‘inappropriate’ for the needs of the patient in question. And we are dealing with an unknown number – because a true disability register does not yet exist – of persons with severe handicaps (we’ll continue to use this word which no longer means anything, but in the absence of something better we’ll continue to use this term). And so forth…

I think we can now define the object of the population which we serve in Trieste (though I know some of you are from elsewhere) … And thus the object of the health care organisation, what this organisation has to deal with, among other things, which increasingly resembles this situation I’ve just described.

In other words, and here I’m simplifying in order to facilitate the discussion, the so-called chronic-degenerative illnesses, illnesses which cannot be resolved by an approach of “find the cause, remove the effect”, illnesses which are extremely complex or which can’t be resolved quickly, these illness are now the vast majority of what the health care organisation is now called upon to deal with in one way or another.

In other words, when confronted with this situation, the ideology of healing appears as exactly what it is: an ideology and not a reality.

Already by definition, most of these pathologies are without a cure. Today, based on the current scientific knowledge, most of these conditions are absolutely incurable.

However, the curious thing is that the techniques which are used in order to deal with this situation continue to refer to a goal which clearly doesn’t exist, which is negated: that of the cure.

These techniques are directed at something which remains an ideology and which cannot be achieved in real terms: the cure. Therapies, protocols and methods of intervention are directed at something which we already know can never be achieved. And this is a very curious thing. And something which, in any case, raises some issues.

One of the central issues, or one of the sub-issues behind this main issue, is that despite the prevalence of chronic-degenerative or chronic or, in any case, incurable illnesses, we still find this enormous discrepancy between needs related to incurable conditions and a situation in which 50% of total resources are allocated to hospitals. And by definition – by their own definition – the only function of these hospitals is to try to cure. They have no function other than that of managing acute illnesses. They are not functional to managing chronic-degenerative illnesses. They are not functional to managing illnesses which are incurable, or which cannot be resolved. And yet the majority of our resources go there.

And this also creates some problems. It creates problems with respect to how we are used as health care operators, at all levels. From the General Manager of a Health Care Agency … to the second or third level of that Agency. That is to say, how we are used, and if we are used reasonably with respect to the object we are dealing with, with respect to the problem which, theoretically or ideologically, we are called upon to deal with, and for which, theoretically and ideologically we are paid. That problem is health, and our priority is to concern ourselves with those who are less healthy and who therefore have a greater need for support, interventions, help and care by the health care organisation.

And therefore the allocation of resources must be reconsidered, in order to determine whether the allocation of resources – the overall health care investment at the national, regional and local level – is reasonably oriented, structured, distributed and directed at the macro-areas of needs, at the prevailing needs and areas of need, or if they are directed at something entirely different. If they are not, instead, oriented towards secondary areas, quantitatively and qualitatively speaking, but which are presided over by various powers, powers which are arrogant and violent and totalitarian, and therefore capable of controlling major resources for purposes which are tangential with respect to the prevalent needs of a given population.

And in order to achiever these goals they construct ideologies, knowledge, powers, systems, mechanisms, institutions, rules and forms of the micro-organisation of health care which are designed and delegated to preside over and govern these minority areas of needs, in order to deny a proper allocation of responses to the prevalent and dramatic needs, the greater … ‘vulnus’, the greater and more real wound.

However…some of you are probably thinking: ‘I’m just a little nurse, where do I fit in, in all of this? How can I become in some way involved in these issues in my own practice? I’m called upon to perform certain tasks, apply reasonable protocols, engage in specific activities. How can I enter into this scenario, admitting for the sake of argument that the scenario is as Rotelli describes it, and not otherwise?’

And my reply to you is: that I don’t have the least idea, because I’m not a nurse. And because I’m not a nurse, I don’t have the least idea. I’ve already got enough problems trying to situate myself in this scenario as the Health Care Agency’s Managing Director. Because, as soon as he poses questions of this sort, the Managing Director will get the following sort of reaction: ‘Excuse me, you say that it’s not very reasonable to hospitalise 16,000 people over 65 each year, but what do you intend to do instead, send them directly to the cemetery?’

Now, is it possible that we are incapable of imagining any sort of alternative between these two options, the hospital and the cemetery? But the alternatives aren’t credible, people will tell us. There’s the hospital, or there’s the cemetery. What else do you want in between?

And they’re probably right! Because, as things stand now, there’s the hospital and there’s the cemetery and nothing else in between.

Trieste, for those present who are not from Trieste, is a city which has 12,000 people over the age of 75 who live alone. And so, if they get sick, or have problems, it’s the hospital or the cemetery.

And the same story is true for the rest home. Italy is a country where every town, every municipality prides itself on having built a rest home. If a town or village hasn’t built a rest home, well, it’s worthless. It’s a source of national pride, the fact that every little town has a rest home. Because if not, where does the elderly person go?

And so… this is how we work. We seem to think that this is how things should be, even if it’s been demonstrated that during hospitalisation, if the medical ward functions well, the doctor will see a given patient for 6 ½ minutes a day. And the nurses, for specifically therapeutic reasons (and not auxiliary activities: changing the bed, bathing a patient, etc..) will see a patient for an average of 4/5 minutes a day.

And so, during a full day of hospitalisation, you receive specific health care treatment for not more than 11 minutes. However, we are still convinced that for hospitalisations - at least the appropriate ones, because for the inappropriate ones, well okay, but for the appropriate ones, no problem – we are still convinced that appropriate hospitalisation is … appropriate. And so you are forced to stay someplace for 24 hours, in order to have 11 minutes of pertinent responses. And we are still convinced that these 11 minutes can’t be transferred elsewhere. That these 11 sacred minutes can only take place in this sacred place, that you can only say Mass inside of a church.

Based on these issues, I believe that it doesn’t make much sense to talk about caring and curing. I don’t believe that the real problem is whether to care for, or to cure. The real problem is that we continue celebrating the sacred rites of something that no longer has any reason to exist, or to exist in this way. But despite this, we have to continue celebrating these rituals.