Knut Erik Tranoy, Ph.D.
Emeritus Professor, Centre for Medical Ethics, University of Oslo, Gaustadalleen 21, N-0371 Oslo 3, NORWAY
2. Among the fundamental ethical principles of Nordic health care systems are the following three:
a) There should be universal access to necessary health care for all, regardless of sex, age, social status, income, and place of living, etc.
b) Different persons with the same illness should be entitled to the same treatment, regardless of sex, age, social status ...etc.
c) Special attention should be given to vulnerable groups that may not be able to define and state their own needs and claims.
In sum, the organization and financing of necessary health care for all is a public responsibility.
It is clear that these fundamental ethical principles amount to a very demanding ideal which could not even begin to be approached (let alone be implemented) without concerted political action. Health care legislation in Norway began around the turn of the century, and health care legislation and has continued throughout the 20th century. Some 15-20 years ago, the realization of this very demanding ideal reached its pinnacle. In the course of the last 15 years this achievement is coming under stress from the necessity of prioritizing and rationing. It is no longer the case that the national health service can provide everybody with everything in the way of diagnostic, therapeutic and rehabilitative services.
3. The Norwegian NHS (National Health Service) is financed by both block grants to local and regional governments and the social security system. All citizens have the same coverage which in principle is total, including such social services as medical and other care for the elderly.
Although life insurance companies operate in Norway roughly as in other countries, no private commercial health insurance is so far available. Recent years have seen the establishment of private commercial "medical centres" based on membership plus a fee-for-service principle with reduced rates for members. Although they may remotely resemble Health Maintenance Organizations, the important difference is that private medical centres are supplements, coming on top of the national health service (of which all citizens are compulsory "members"). Private centres presuppose the existence of a public health service and in fact get a proportion of their income from services "sold" to the NHS. It is conceivable that the future will see a similar development of specialised commercial health insurance plans.
4. Rationing and setting priorities. In the late 1970s and early 1980s it became clear that systematic rationing and setting of priorities had become a necessity. A government appointed "health care priorities commission", representing all political parties, worked for two years and submitted a unanimous report in 1987. The backbone of the report was a five level system of priorities as follows:
I. First priority is for interventions which are necessary in the sense that failure to act will have immediate, life threatening consequences for the patient, or groups of patients, or for society as a whole.
II. Second priority is for interventions which are necessary in the sense that failure will have disastrous or very grave consequences for the patient, or groups of patients, or society as a whole.
III. Third priority is for interventions of well documented utility/efficacy, and where the consequences of failure are clearly undesirable but not as serious as in level I or II.
IV. Fourth priority is for interventions which are in demand and are presumed to promote health and quality of life, and where the consequences of failure are clearly less serious than in levels I-III.
V. Fifth (or zero) priority is for interventions which are in demand and which are neither necessary nor of well documented utility.
The commission (of which I was a member) was sceptical with regard to the reactions from politicians, health professionals and the public. To our surprise, the proposal was very well received and soon gained wide acceptance. Parliament included its main principles in a national health plan which was passed in 1988. But agreement on principles is only the beginning. Problems remain in translating the principles into practice. I shall mention four special issues which have generated heated discussion both among the experts and in the general public.
Level I is, in fact, little more than a summary of widely accepted traditional principles where medicine and ethics meet and merge, so to speak. But the rationing of scarce resources within the limits of priority level I may generate controversy. One such case is bone marrow transplantation (BMT), a life-saving intervention when successful. And there is no doubt that (for instance) myelomatosis is a life threatening illness which should be handled on level I. But resources are scarce in a double sense: suitable donors are scarce, and the material and economic resources (doctors, beds) are also and necessarily restricted. Should all who have the same diagnosis be given the same treatment (as fundamental ethical principle 2 might seem to require)?
A line has to be drawn between patients who get and those who do not get the treatment. No matter where we draw the line, some will fall below it. It is important to see (a) that, in a public health service of the Nordic type, any given amount of resources always has alternative uses. And (b) it is neither medically nor morally defensible to put scarce resources to uses which will foreseeably yield less favourable outcomes than other uses - save fewer lives, cure fewer patients.
This argument does not carry the same weight in a health care system where patients buy services in a market, and where justice means equality of opportunity to buy what you need. Decisions about alternative uses are then (largely) patients' decisions.
5. Within health care systems of the Nordic type, rationing of scarce resources in the context of serious illness must consider not only the seriousness of the illness but two other factors as well: the prognosis of the patient, and the efficacy of available treatments. If all whose need for treatment is defined solely by reference to the seriousness of their condition, were to be treated (with, say, BMT) without reference to efficacy and cost- benefit aspects and prognosis, the result would be that other patients suffering from serious but curable diseases would die for lack of treatment. Medical need defined simply in terms of life threatening conditions is infinitely great.
On the other hand, if we were to select patients for treatment merely on the basis of cost- benefit and efficacy considerations, we might well increase the amount of (medical) good produced but at the cost of having eliminated from our system the virtue of compassion based on need - as demanded by what many would call fairness if not by all other names of justice.
It is obvious that the seriousness of an illness is relevant for the determination of the need for treatment. It is equally obvious that in contemporary research based medicine, the treatment of choice is (ideally) one whose effect is well documented. (The main purpose of the controlled clinical trial is to establish efficacy and safety.) And finally, it seems obvious that the decision to treat or not treat will (and should) depend also on the prognosis of the patient, given knowledge of the medical condition and available therapeutic options. All these aspects must be considered together. There seems to be no other way in which a public health service of the Nordic type can "solve" or handle the inherent tension and conflict between medical need for treatment in light of the seriousness of an illness and the equally unavoidable cost- benefit and efficacy requirements.
6. Rationing scarce resources has raised another "who decides?" - problem in connection with the selection of patients, now under heated discussion in Norway. Briefly, the issue turns on the need for a second opinion when a public hospital must select recipients of vital treatments from several patients in need of it. There has been a loud and strong public demand for a more open decision making process involving the use of an independent second opinion. In highly specialized areas of medicine, such a second opinion cannot always be found in a small country. In this case the problem can be solved by drawing on the resources of the whole Nordic region - which illustrates the importance of cultural and linguistic homogeneity. In Norway, this problem has become acute in connection with BMT (Bone Marrow Transplantation). The Ministry of Health has set up an interdisciplinary advisory board with two functions: It may seek a second opinion as regards the strictly medical aspects of a given case. And it may itself give advice applying non- medical criteria as well. The safeguarding of the independence of "external" participants in the decision making turns out to be of supreme importance in this connection. The credibility and the trustworthiness of the whole NHS may be called in question if the independence requirement is not met in crucial cases. Crucial cases are those that make the front page in the newspapers.
It is equally important not to confuse second opinions with courts of appeal. There will be many second opinions but only one court of appeals: the final decision rests with the minister of health.
7. Priority level II: presents special problems and challenges. Here the typical patients are people with serious illnesses (for instance, needing hip replacement surgery) but not so serious that they cannot wait for a shorter or longer period. So a queue is forming. When a queue is orderly and organized we have the beginnings of a waiting list. But the first come, first served- principle is not enough to make a queue orderly.
One of the first government level initiatives after the introduction of the five level system aimed at (1) the creation of a fair system for the keeping of waiting lists for priority level II patients, and (2) issuing a guarantee that no patient entered on such lists should have to wait more than six months for treatment. This initiative may well deserve to be called an innovation. But it is also experimental. Experience shows that, after a period of about two years, waiting lists are not being established and kept in the same way in different parts of the country, not even in different hospitals in the same county. This clearly is a threat to basic ethical principles 1 and 2: to ideals of equality of access and treatment. This also shows, incidentally, how notions of health care justice are not independent of the social organization of the health services. What these developments compel us to do is to see the whole country, all of "health service Norway", as one region in order to avoid injustice. There should be one single set of rules for keeping and updating waiting lists. And it becomes desirable to be able to move patients and/or resources across borders between health regions, in the names of efficacy and justice equally.
8. Yet another issue brought up by recent developments in Norway is privatisation: the development of a "second track" which will be private and/or commercial. Traditionally, there has been considerable resistance to such developments, driven by the fear that they would undermine the public health service and its ideals. Given the uncompromising need for setting priorities and the introduction of the five level system, some problems begin to look different.
Two things can be said to "follow" from the new five level system. (a) That priority level V (zero priority) should not be a public responsibility, and (b) that not all options on level IV should be either. So far the issue may appear fairly simple.
But this is not all. At least two more questions are raised by the privatisation issue. (c) What if private initiatives could help us cut down on the waiting lists for those on level II? And what if private initiatives and investments could help us achieve a faster turnover on level I, for instance, with regard to bone marrow transplantation where there seem to be capacity problems?
What we lack here, it seems, is well documented knowledge about the actual consequences of specific types of privatisation. There is a willingness now to try new approaches which may lead to new forms of "peaceful coexistence" and constructive cooperation between the public and the private sectors of Norwegian health care.
My reflections on recent developments in the Norwegian NHS under the pressure of rationing and prioritisation may be summarized thus: The new five level system of health care priorities functions as a new framework for the clarification and solution of certain difficult but important problems for health services of the Nordic type.
9. My final remarks will be devoted to certain aspects of the problem of cultural relativity in health care.
It is clear that the panorama of medical needs will vary, and sometimes drastically, from one region or country to another. What this means is that health care priorities cannot always be the same everywhere. Conceivably, something like the Norwegian five level system may work in other countries and cultures as well. But it is not certain that the definitions will accommodate precisely the same acts and interventions. I do find it difficult, however, not to think that priority level I would be roughly the same, regardless of culture.
The proviso here is: as long as we remain within the confines of a science based clinical medicine. Where quality of life becomes more important, we should be prepared for greater variations.
It might be both interesting and useful to know more about such matters - in a hard empirical sense of to know.
At the same time I find it an undeniable truth that any medical ethics, whether for clinical medicine or medical research or health care, must be anchored in a local (national) culture. I believe this to be a condition of moral viability - and therefore also of medical viability.
But, speaking of medical ethics and priorities, is not the notion of an unconditional right to health care a typically western human right? I am not at all sure. And I have two major reasons for saying that.
One is that the idea of universal access to basic or necessary health care is gaining ground, internationally and cross-culturally. I have been very much struck by the case of the organization of health care in Japan. But equally, and in one sense, most remarkably in the US as demonstrated now by the proposals of the Hilary Clinton Task force - and I do say "most remarkably" since I have been able to keep an eye on the development of health care ideology in the United States from my first American sojourn in 1946.
The second reason I have for my provocative statement is connected with the perennial discussion of the two basic concepts of medicine and health care: illness and health. One of the most discussion provoking inputs in this connection has been the WHO definition of health. The main point of this definition is that health is defined as more than the fight against disease (or disease control). In my opinion, some doctors and even more philosophers have been led by this definition to overlook one of the basic facts of medicine: the fact that, in a very precise sense, illness comes before health, and in all cultures. What I mean by this is that the basic human experience in this context is the experience of being ill. Health does not make sense as an experience except in contrast to illness, and quite especially, in the experience of feeling well again, after having been ill. These experiences come before and are presupposed in our very variable ways of reacting to and of handling illness, as prevention as well as cure.
So, in a contemporary cross-cultural perspective, the necessity of prioritizing and rationing in health care contexts is supported by two basically cross-cultural carrying beams: One is the experience and notion of illness. The other is medical science as the basis of any modern health care system, no matter who pays.