Reports of the Ministry of Social Affairs and Health 2001:1
Equity and human dignity in health care in Finland
Ministry of Social Affairs and Health National Advisory Board on Health Care Ethics (ETENE) Reports 2001:1 Summary
National Advisory Board on Health Care Ethics (ETENE). Equity and human dignity in health care in Finland. Helsinki 2001. 38 pages. (Reports of the Ministry of Social affairs and Health, ISSN 1236-2115; 2001:1) ISBN 952-00-0913-2
The main theme of the National Advisory Board on Health Care Ethics (ETENE) in 2000 was human dignity and equity in Finnish health care. On August 17, the Board held a seminar on topics connected with this basic theme. The presentations and discussions at the seminar, a summary of the seminar as a whole and a review of topics discussed at other meetings of ETENE are presented here to stimulate debate and provide a basis for discussion both for those working in health care and for the users of health care services, and also to serve as a bridge builder between different groups.
Key words: ethics, human rights, health care, human dignity, equality, rights, priority setting
2 FOREWORD
Our age is awash with topics that bounce nish health care, placing special stress on the issues momentarily to the surface, creating a brief ferment of equity and human dignity. It held a internal seminar and perhaps even rather strongly expressed on this theme on August 17, 2000. A document was opinions, only to sink again and make way for the produced from the seminar to provide a basis for next topic to emerge. Debate jumps from issue to public debate on ethical issues of principle. The issue. Different forums have a different focus of document invites contributions to the debate from interest. What shocks one person may to someone all concerned parties: patients, health care else be a normal part of everyday life. But there is professionals, decision-makers, the media and the also a need for discussion in which the participants general public. take the time and effort to get to know their topic and seek genuine dialogue between the different The Board has also gathered together a number of parties and views expressed. Society studies and concrete themes and perspectives relating to equity comments on itself through the flow of public debate. and human dignity in the health care sector which have played a key role in its own discussions during Health care is a subject of relevance to all. It is a the first two years of its work. topic on which people have a wealth of experience and a variety of views. Public discussion of health Human dignity and equity are by no means care issues would seem rather to be increasing than straightforward concepts, and can be appealed to decreasing. This is important, as health care uses up in conflicting ways. However, deliberately considerable public resources, while the issues of highlighting them reminds us that health care is in the health and sickness are of fundamental importance final analysis all about the lives of individual people to everyone’s quality of life. and how to take care of the common good and the equality of our citizens. In 1998, the Finnish Government appointed the National Advisory Board on Health Care Ethics In view of the importance of these considerations, (ETENE). A broadly based body comprising ETENE has decided to publish the documents from representatives from a large range of different the above-mentioned seminar in order to facilitate sectors and areas of experience, ETENE is charged broader debate. They do not contain many with examining issues of health care ethics in Finnish unambiguous statements; the focus is rather on society. The issues on its agenda vary across an presenting perspectives and framing questions that enormous range of topics. The aim, however, is to the Board wishes to raise and stress in public debate. examine them all from the perspective of a fairly general framework of values. ETENE warmly welcomes all comments and ideas, either on these documents or in general on topics During 2000, the National Advisory Board on relating to health care ethics. Health Care Ethics examined ethical issues in Fin-
Mäntyharju, December 18, 2000
Martti Lindqvist Chairman of ETENE
3 Table of Contents
Summary ...... 2 Foreword ...... 3 Equity and Human Dignity in Health Care in Finland ...... 5 The ethical debate...... 6 National Advisory Board on Health Care Ethics ...... 6 Realism and idealism ...... 7 Human dignity ...... 7 Equity ...... 9 Urgency and prognosis of treatment as ethical criteria ...... 11 The importance of information ...... 12 Limits and sources of health...... 12 Invitation to join the debate...... 12 Themes and Perspectives for the Public Debate ...... 14 Equity and equality ...... 14 Resources...... 14 Vulnerable groups ...... 14 Working life ...... 15 Quality and efficiency of care...... 15 Wellbeing at work in the health care sector ...... 15 The importance of data collection in health care development ...... 16 Cooperation and volunteers ...... 16 Health care and faith in the future ...... 16 Can We Define and Measure Equity in Health Care? ...... 17 Introduction ...... 17 Why in the headlines?...... 17 Equity assessment of the funding pool and its ramifications ...... 18 Measuring equity ...... 19 1. Distribution of services...... 19 2. Funding ...... 19 Can equity assessment provide support for political decision-making? ...... 19 Key Issues in Health Care Ethics ...... 21 Introduction ...... 21 Realism and idealism ...... 21 Why the focus on human dignity and equity? ...... 22 Issues related to human dignity ...... 22 Issues related to equity ...... 23 Autonomy, freedom and abandonment...... 24 Problems ...... 24 In conclusion...... 24 Equity in Health Care ...... 26 Underlying principles ...... 26 Equal access to treatment ...... 26 Equality in quality of treatment ...... 27 Equality in individual care decisions ...... 27 Appendix 1: Members of ETENE ...... 29 Appendix 2: How to contact ETENE...... 30
4 National Advisory Board on Health Care Ethics (ETENE) Seminar in Helsinki, August 17, 2000
EQUITY AND HUMAN DIGNITY IN HEALTH CARE IN FINLAND
We are living in the midst of rapid change both Health care reflects the general trends within society. globally, nationally and locally. Many of the long- Scientific-technological change in particular has a term effects of this process of change are barely, if powerful impact on health care, generating both new at all, discernible today. Change always involves both opportunities and, in many cases, also new costs. opportunities and risks. For some people, change The evaluation of new health care procedures is can easily mean danger and suffering. This is why vitally important. Health care is also influenced by we must make the effort to ensure that such people changes in population structure, lifestyle and patterns or groups of people do not end up suffering of consumption. For example, the current ageing of unreasonably as a consequence of change. Health the population and the rapid spread of single-per- care is an area which has to confront many of the son households will raise both expectations and the problems and suffering caused by social change. The cost burden on the health care system. knowledge, values and choices of decision-makers have a major influence on how skilfully and humanely Present-day health care ethics focus on two very managed the process of change in practice is. different areas whose relationship to each other is essentially like the opposite ends of a U curve. At The present process of change is affecting many one end are the rapidly developing and changing areas of life — but above all technology and the applications of medical research and medical economy. With time, this will also have far-reaching technology. This area is the focus of both unrealistic implications for social policy and social institutions, expectations and major commercial interests. and for our culture and values. Knowledge is the most important development capital. The generation At the other end of the U curve are the various and communication of knowledge has developed groups of patients with common, chronic and into an enormous system. Rapid production and incurable illnesses, or who suffer from a complex dissemination of knowledge poses a risk of web of social and health-related problems. These irrelevant, incomplete or simply erroneous groups may seem to present difficult care problems, information rapidly reaching an audience which is while the measurable results of treatment may be not necessarily equipped to judge the truth or rather modest. This is also true of efforts to reduce importance of the information it receives. For many the suffering of the terminally ill. In a society that people this is a source of uncertainty. All levels of worships competition, performance and peak education should therefore devote greater attention achievements there is a danger that these types of to both the understanding and the critical evaluation patient may end up being excluded. But it is not only of information. the patients themselves who are under threat of exclusion. Both their relatives and the health care The information society holds enormous potential professionals whose job it is to care for them can for economic success and human development, but also easily end up in an unreasonably difficult and this will not come automatically, nor will it affect vulnerable position. Entire areas of life could become everyone in equal measure. As rapid access to and excluded from mainstream society. application of information takes on a key role in society, there is a danger that people who are unable This is therefore an appropriate time to discuss the to access or apply this information will become present and future of Finnish health care, particularly socially excluded. from the angle of equity and human dignity.
5 The ethical debate
In social development, ethical vigilance manifests as come to broaden and deepen the debate. an ongoing debate on values and choices in which each individual compares and reflects on his own In present-day society, health care phenomena and experience and thought in juxtaposition to the issues affect a whole range of different forums and experience and thought of others. Not without groups. These, in turn, can have very different views reason has it been observed that the credibility and on the ethical values that should be attached to viability of democratic society depend critically on different issues. By stimulating debate on ethics, we the conduct of ethical debate both among members can bring the different values and experiences of the public and between members of the public referred to above together within a single process. and decision-makers. Finland still suffers from a Never before has there been a need for such broad dearth of creative thought on ethics and quality public debate on ethics as there is today. There are debate on contemporary ethical issues. The time has two main reasons for this:
1. It is an irrevocable fact that we are now living in a world of multiple truths. This is so both at the level of the global community and at home in our own society. Both ideologically and ethically our thought is longer underpinned by a unitary foundation and way of understanding. We now have to seek common goals and ethical principles from a base of different experiences, traditions and points of view. We have to build a world in which different convictions, sets of values and lifestyles can live safely together in creative dialogue.
2. Rapid technological development is taking place in specialized and fairly autonomous subcultures that are firmly entrenched in their own theoretical and linguistic worlds. It requires a major effort to really understand and form an opinion on, for instance, development trends in biotechnology, and to envisage what the future of this field is likely to be. It is, however, important to do so, as high technology has far-reaching implications — at least indirectly — for large numbers of people.
The practice of ethics involves above all lively, public Democracy is the political system that provides the and uncensored ethical debate in which each best framework for effective ethical debate. individual and group has the right to bring out their Someone once said that the human capacity for own experiences, thoughts and values. It is vital that good makes democracy possible, while the human everyone has the right to ask any question capacity for evil makes it essential. whatsoever and to make critical comments. We need a wealth of real-life stories to illustrate what is A credible health care ethics must begin with the actually happening day-by-day on the health care value of the individual human being and the communal front line. As elsewhere in human life, what is hap- nature of life, while using the democratic process to pening is generally both good and bad, because, as pursue the ideal of equity. An approach such as this people, we live in the intersection between good is rooted in realities, does not deny ineradicable and evil, under the shadow of perpetual moral limitations, and is able to conceive of the human being conflict. as a moral subject capable of both good and evil.
National Advisory Board on Health Care Ethics
In autumn 1998, the Finnish Government appointed Care Ethics (494/1998) issued thereunder. the National Advisory Board on Health Care Ethics ETENE’s brief is to initiate both within its own ranks (ETENE), whose work is based on the Act on the and broadly in society a debate on health care ethics Status and Rights of Patients (785/1992) and the focusing on topical issues in contemporary health Decree on the National Advisory Board on Health care. Its membership is therefore drawn from a broad
6 range of people representing the experiences and and needs of patients are being lost under the weight perspectives of health care customers, providers and of management structures, routines and technology. professionals, ethical and legal experts, and political The obvious overburdening of health care staff also decision-makers. Under the Decree, ETENE must presents an ethical risk to patients. The condition of include at least four members of Parliament in its care systems and the treatment of patients serve as ranks. a gauge of how humane social policy is at any given time. A welfare society can be recognized by the The focus of ETENE’s work is strongly human- fact that it harnesses economic success as the motor centred. Ethics are important to health care above of social development. This is primarily the all in order to ensure delivery of human rights in care responsibility of political decision-makers on all provision and quality care in a safe and secure levels from national politics to the smallest units of atmosphere. There is a danger that the experiences local government. Realism and idealism
Ethics as a discipline exists in the tension between requires that legislation be genuinely based on a living realism and idealism. On the one hand, part of its and respected moral reality. But on the other hand, role is to consider ideals — ‘the best possible world’ ethical debate can also begin where the law leaves — however naive or far-fetched this may seem. The off. Ethical responsibility is not limited to legal ability to dream is essential to creative change. But, responsibility. Every individual and community must on the other hand, an ethics that fails to take account generate an ethical understanding and autonomy that of prevailing realities and practical limitations will be does not derive primarily from the hope of reward, of little practical use. The main problem with broad fear of punishment or outside control, but from declarations and lofty ideas is that they have no people’s own will and commitment. practical effect. They merely exist in their own world of ideas. It is not realistic to expect that health care could survive as some sort of separate enclave abiding by Our ethics must be realistic. We must be prepared an entirely different system of values from the rest to examine ugly, controversial and unpleasant issues, of society. The values of the age — both good and because evil is the unavoidable complement of good. bad — will inevitably permeate health care, if a little The concrete rooting of ethics in everyday life, the more slowly in the public than the private sector. procurement of valid and rounded information on However, this does not mean health care has to be prevailing conditions, and the charting of practical merely a passive observer of what is happening in alternatives are all very important issues. One of the society. Those involved in the health care arena can signs of ethical responsibility in everyday life is the join the debate and highlight the experiences and ability to minimize evil and to make difficult choices observations the health care sector has of Finnish involving unwelcome but tolerable consequences. society and its development. Health care professionals have a wealth of untapped knowledge, In relation to the law, ethics has two main functions. understanding and wisdom about life. They are On the one hand, the process of ethical debate and aware in very concrete terms of the human costs of reflection precedes the later crystallization and social change. It is in the interests of us all to harness enactment of legislation. The ethical process thus this knowledge for common consideration and use. leads to concrete law. The legitimacy of society Human dignity
Human dignity lies at the heart of all health care, never lose track of this basic fact. Even care which constituting both its foundation and its purpose. Care skilfully utilizes the best tools of diagnosis and highly systems, traditions and philosophies have arisen complex and advanced methods of treatment is because individual human beings have been inadequate if the individual person is not recognized, considered so valuable that they cannot just be left protected and respected. Nothing less is at stake to the mercy of their sickness and suffering. We must here than the human rights of both patients and health 7 care staff. Finland’s Act on the Status and Rights of social or mental health problems, or problems relating Patients takes a clear and internationally progressive to their lifestyle. This is often followed by rejection stand on behalf of the human dignity and self- or otherwise harsh or negative treatment. Such determination of the patient. people include criminals, antisocial people, those with alcohol or drug-related problems and people One shadow hanging over human dignity is the public with psychological problems. Discrimination is conception that only independent, productive, apparent both in attitudes and in the way such people economically self-sufficient and ambitious people are treated. There is rarely anyone to take their side. really matter. The increasing currency of this way of thinking means a growing burden of mental and Other groups whose human dignity is especially emotional distress for certain individuals and groups vulnerable include people in long-term geriatric care. in society. To some extent this distress is a general Such old people can easily feel themselves a burden burden of loneliness arising from a variety of different and abandoned. They are also vulnerable to causes. But to some extent it stems from the mistreatment. The quality of life for people in long- experience of failure — in many cases a cumulative term care and the provision of care specifically to series of failures — inability to cope, anxiety and support their quality of life are key issues in care exclusion. It is no wonder that care systems are ethics. One group at the other end of the age having to cope with a constant and growing flood of spectrum are children in need of paediatric deprivation and mental health problems. Health care psychiatric care, who often have to wait several workers see the other side of the current obsession years for treatment, by which time their symptoms with success and performance. Those who cannot have become chronic. The recession brought cuts ‘make it’ on these criteria have nowhere else to turn. in preventive work, or even made it in practice impossible, which will of course lead to increased In health care, as elsewhere, ‘interesting’, costs in the future. ‘cooperative’ and ‘readily treatable’ patients tend to be given priority. On the other hand, ‘awkward’, Material resources are important and are often ‘hard-to-treat’ patients with multiple problems are clearly inadequate. Finnish society will be unable to vulnerable to prejudiced attitudes and face the threat cope with the health care challenges of the next few of exclusion. decades without the input of considerable extra resources. But money alone cannot solve problems Respect for human dignity and for the integrity of of human dignity. Discussion of resources can often the individual are key issues. It is sometimes be a way to avoid difficult issues. We must create necessary to ask whether a particular treatment new practices and models of thinking, and a culture respects the human dignity of the patient. This is of genuine contact between people. The fringe areas shown by complaints to the Office of the of health care bring society face to face with its own Parliamentary Ombudsman (?) over mistreatment distress and helplessness, from which we can all learn of the elderly. In closed institutions, involuntary a great deal. treatment, care of the mentally handicapped and institutional psychiatric care, too, we must give The right of self-determination is an essential special attention to ensuring that treatment and care cornerstone of care ethics. And it is very important do not infringe upon the human dignity of the patients. how we interpret this in practice. The patient’s right We must ask whether quality requirements in these to self-determination confirmed in the Act on the areas and the threshold of acceptability for methods Status and Rights of Patients means above all an of care experienced by patients as threatening have emphasis on dialogue and contact between patients been lowered in comparison with other areas of and the health care professionals charged with their health care. Is there something in the way institutions care. The care relationship must be based on mutual are run that patients experience as threatening to trust and understanding. Unfortunately, the principle their human dignity? of autonomy is often not realized as we would hope. Paternalism and callous indifference both pose ethical From the point of view of ethics we must be aware risks in health care. If autonomy is interpreted in a of how easily people can be labelled by their moral, strictly technical sense, there is a danger of 8 indifference and the transfer of responsibility from language and help patients reach a decision. Genuine professional carer to patient. Sick, dependent and contact and the process of building trust are key frightened people often suffer strong internal conflict issues here. For the sick and other people requiring and are unable to choose between the available care, independence is often highly restricted. This alternatives. It is therefore important for health care must be understood and acknowledged. Indifference professionals to be able to empathize with their leads to exclusion. The principle of patient autonomy patients, discuss the alternatives in understandable does not reduce the responsibility of the professional.
Equity
The interpretation of the concept of equity in different solutions to all sorts of problems that do not situations varies depending on the surrounding necessarily have anything to do with the basic society and its values. The endeavour to find a valid functions of medicine and health care. Although interpretation of equity in each situation lies at the health care is currently the focus of a lot of fear and very core of social policy. Human dignity and anxiety, the overall situation in nursing and care extending a helping hand to our fellows form both systems in Finland is not that bad. This does not, of the foundation and the goal of health care. Health course, mean there are no problems or that certain care is influenced by a whole range of internal and individuals or groups are not facing a clear danger external factors: values and general attitudes within of exclusion. care, available resources, internal conflicts, and external forces such as the pharmaceutical industry, Health care productivity can be measured in a equipment manufacturers and various other outside number of ways, but the key issue is whether the interest groups. The majority decides what the system really fosters health, genuine care, security minority can have. Knowledge on consumer rights and quality of life. Is the right to care determined and the techniques available to treat illness can raise according to need, and which rights are themselves both realistic and unrealistic expectations of health dependent on the system? How can we foster care delivery. wellbeing, equity and human dignity, qualities not necessarily susceptible to quantitative measurement? Section 19 of the Finnish Constitution guarantees the right to receive indispensable subsistence and Health care and patient care have experienced a care for all who cannot obtain for themselves the notable change in the increasing emphasis being means necessary for a life of dignity. Government attached to the interests of service purchasers. In must guarantee adequate social and health care the paternalistic system of old, it was the health care services for all. Government responsibilities are also provider who primarily defined the needs of the stipulated in the Finnish Local Government Act, the patient, seen as the ‘object’ of treatment. But Primary Health Care Act, the Act on Specialized nowadays the purchasers of health care have a fairly Medical Care and the Act on the Status and Rights broad say in what services they require. It is of Patients. A number of international conventions therefore essential to identify the real demand for and the European Social Charter also define society’s services in different situations and locations. We responsibilities towards its members. should be aiming towards a health care system characterized by partnership and cooperation Finnish society has gone through enormous changes between the various stakeholders. Health care in recent decades, and, as a consequence, there has cannot be merely the passive fulfilment of people’s also been a fundamental change in the Finnish system unlimited needs. Nowadays, care also benefits from of health care. Social systems all over the world have the involvement of patients’ and relatives’ experienced a radical transformation, and the organizations and a whole range of other cumulative effect of all this on Finnish society has communities and individuals engaged in voluntary been considerable. The medicalization of life seen work. In the case of many illnesses, peer group in a growing overemphasis on medical and health support among the patients has proved to be very care perspectives has given rise to new demands valuable. on the health care system. It is expected to provide
9 With regard to equity, key issues are equal treatment, reduced kidney function) or other unambiguous non-discrimination and respect for human dignity. laboratory results (e.g. cancer). In contrast, the latter Equal treatment is reflected in issues such as access group is characterized by differences within the to care: do people have equal access to care on the medical profession on the need for treatment, or else basis of their state of health irrespective of their diagnosis based on other than numerical quantities. circumstances, the area in which they live or other In the future, we can expect the gradual background factors? Differences between harmonization of diagnostic criteria to facilitate geographical areas undermine the principle of greater equity in the distribution of services. It is equality. People can also easily be stigmatized by therefore vitally important to develop national negative social stereotypes associated with their recommendations on care. lifestyles and problems. Long-term care carries the implicit threat of gradual social death. The legislative safeguards for ensuring the equity of the health care system are in practice rather toothless. Access to health care services varies between The Act on the Status and Rights of Patients sets different groups of the population, while some out the principles of good care, but failure to observe illnesses would also seem to place sufferers in a these principles rarely leads to any consequences. disadvantageous position compared to those However, there are cautionary examples from around suffering from other illnesses. Psychiatric services the world of what bringing the courts into health care vary from area to area in both quantity and quality, can mean in practice. Court proceedings on patients’ and there is inadequate welfare provision for rights can stimulate valuable public debate. But they substance abusers. It is also the case that some small also deal with some extremely sensitive areas, as ill population groups — such as children in care — health is a very personal and delicate issue. We must find themselves in a different position from the rest therefore bear in mind the possible implications of of society. Such inequality often stems from court proceedings for the privacy of patients and unconscious prejudice that leads to problems being their relatives. brushed aside casually without much thought. Equity and non-discrimination are essential pillars In practice, issues of principle relating to equality of our society. We are entitled to health care and and non-discrimination arise primarily in individual treatment when sick on the basis of the nature of decisions on care, in questions such as whether a our illness, our need for treatment and the person has been left without a certain treatment on effectiveness of the proposed treatment, irrespective the grounds of age, mental handicap or multiple of the municipality in which we live, our social status disability. The risks of treatment can increase with or other aspects of our lives. The mention in the Act age, and some treatments are not suitable for old on the Status and Rights of Patients that care must people, but leaving someone without treatment be provided within the scope of the currently purely on the grounds of age is clearly discriminatory. available health care resources has given rise to a Each case should be resolved individually, taking lot of differing interpretations. It is therefore worth into account all relevant factors. pointing out that the Act in no way reduces or removes the responsibility of the municipalities to Some health care services can be divided in such a provide primary health care and specialized medi- way as to allow a relatively simple quantitative cal care as stipulated in, for example, the Primary assessment of equity, while some require the Health Care Act and the Act on Specialized Medi- balancing of a number of qualitative factors. The first cal Care. The idea is rather to develop the quality of group would all seem to involve some sort of life- health care operations. threatening illness (e.g. heart attack) and diagnosis based on definite biochemical quantities (e.g. Currently topical equity issues include:
1. Working life is now very demanding. It has become a rather merciless discarder and consumer of human beings. Some employers are also keen to get access to the health records of their employees or prospective employees. At the same time, some people of working age have been pushed more
10 or less permanently outside the labour market, which of course undermines their confidence and leads to exclusion. This in turn has implications for their health. 2. Medicine, nursing and biotechnology are also to some extent a large international business with its own laws and values which are not necessarily in harmony with the social goals of equity and justice. 3. The illusion of the completely altruistic motives of carers and researchers has been shattered. Shady dealings and abuses are known to take place. The accumulation and use of funds must be properly supervised. 4. There is no easy way to interlink private and public sector services in a fair way. Competition is an important motor of development, but can also easily exacerbate differences in consumption. The growth in economic inequality observable elsewhere in society will inevitably also be reflected in health care. 5. The growing development gap between regions and the continuing drift of population into growth centres will exacerbate the problem of regional inequities in health care provision.
Urgency and prognosis of treatment as ethical criteria
The debate on health care priorities has focused on Under the law, urgent treatment takes priority. It is studies of effectiveness and the drafting of common fundamental to people’s sense of security that they health care recommendations as a rational and can be confident they will receive essential treatment realistic way to control costs, improve quality and without delay. This principle can, however, create reduce inequities in the health care system. The problems, as urgency can be hard to define. gradual harmonizing of diagnostic criteria can also help to increase equity in the distribution of services. It has been suggested that we should perhaps We must gather comprehensive and reliable consider dropping the concept of urgent treatment, information on the use of resources, treatment or making it somehow more susceptible to rational provided and treatment criteria, and on the long- definition. The problem is tied up with recent attempts term results of treatment. Open, analytical debate is to link the concept of subjective right to the essential. traditional special status held by urgent treatment. Proponents of such a move suggest urgent treatment An ethically important principle is to acquire as should be the (only) special responsibility of the reliable information as possible on the prognosis of municipal health care system — the responsibility treatment in different situations. In practice, for providing other treatment would then only extend however, things are not that simple. In setting to the limits of the available funding. The concept of priorities for effective treatment we must not forget subjective right has not traditionally been a part of that the value of human care, closeness and warmth the health care system, being a borrowing from the is not susceptible to quantitative measurement. legislation on daycare and on services and assistance Moreover, measurements of effectiveness often for the disabled. The problem is that it could lead to concentrate solely on cost-effectiveness, mortality an artificial tension between urgent treatment and rates and life expectancy; quality of life is less often other treatment. On one hand, linking the concept taken into consideration. of subjective right to the existing concept of urgent treatment could lead to a situation in which everything Common health care recommendations can bring possible has to be done under the heading of urgent equity and equality to the health care field. However, treatment. On the other hand, however, practical it is worth giving some thought as to how binding experience of the way the legislation on services and such recommendations can be in individual cases. assistance for the disabled has been applied in some Each patient is a unique individual in a unique life municipalities would suggest there is a danger that situation. Recommendations can therefore provide some municipalities would interpret their only a general guideline, not detailed instructions for responsibility as extending no further than the treating an individual patient. provision of urgent treatment.
11 The importance of information
In ethical terms it is important for society in general, can also be confusing and requires the reassessment and for patients, their relatives and patient of a whole range of issues. From the point of view organizations in particular, to have as much of ethics, we should strive to ensure that this increase information as possible on treatments and care in information also leads to an increase in systems, and also on the rights of the patient. We understanding and a strengthening of care are now in the situation that a large number of people relationships without unreasonable disputes over loss have almost unrestricted access to an enormous of face or suspicions between patients and the health quantity of information on medicine, nursing, the law care professionals charged with their care. This and society in general. The Internet has made it presents a challenge for all sides, as it will inevitably possible for people to access information from all lead to a restructuring of roles and structures of over the world. It is valuable to be able to access interaction. reliable, up-to-date information in this way, but it Limits and sources of health
The health care system cannot solve all our problems, It is important to remember that, even if the available not even all our health-related problems. Health is a resources were not as limited as they have now matter for us all, and the promotion of health is a turned out to be, the very nature of ethics itself joint venture requiring input from many sectors of involves a basic tension requiring the constant society. Moreover, it is not the health care system balancing of different quality perspectives. The core as a structure which has the most decisive impact concepts here are the common good, the rights of on our health and wellbeing; what really matters is the individual, and equity. If we are to provide for the people who work in it. Thus, it is also of social wellbeing and a truly human quality of life in fundamental importance ethically to ensure that the long term, a viable social ethics must protect all workers in the health care sector are valued and to of these values. take care of their wellbeing, working conditions and ability to cope at work. No health care system can meet all our needs and expectations, let alone free us from the limitations We must speak up on behalf of a caring culture, a inherent in human life, despite the rosy visions of sense of community and an attitude that values social science fiction. Nature, history and the universe itself security and solidarity. Wisdom and compassion are are all on a much vaster scale. The individual human the key qualities in any ethics. Wisdom means being is a fleeting and fragile figure in the great flow knowledge integrated by our values into our of life. All existence is transient. To deny this would experience of life, while compassion means the ability be both dishonest and unethical. to see and experience things from other people’s point of view. There are no external methods or Ethics can never be a closed book, as it deals with resources that can compensate for the loss of these incomplete, limited and constantly changing vital qualities. We must speak up on their behalf, as processes. Ethics must live in the present even when they are fundamental to the very survival of our it can only perceive a part of that present. Realism, society and culture. It is the job of society to the urge to learn and a willingness to accept the facts guarantee legality, security, basic equity and the are excellent allies in this endeavour. protection of the weak.
Invitation to join the debate
This document based on the discussions conducted debate, to which we invite all those involved in health by the National Advisory Board on Health Care care, decision-makers, the media and the general Ethics is being issued to stimulate an open public public. The aim of the debate is to develop Finnish
12 health care in an ethically responsible direction. relating to equity and human dignity in health care that have been prominent in our discussions during We are simultaneously issuing a separate document the first two years of the Board’s work. We welcome presenting a number of themes and perspectives further debate on these themes too.
Helsinki December 12, 2001 National Advisory Board on Health Care Ethics
Martti Lindqvist Risto Pelkonen Ritva Halila Chairman Deputy Chairman General Secretary
13 National Advisory Board on Health Care Ethics (ETENE)
THEMES AND PERSPECTIVES FOR THE PUBLIC DEBATE
During 2000, the National Advisory Board on general public. Health Care Ethics examined ethical issues in Fin- nish health care, placing special stress on the issues The Board has also gathered together a number of of equity and human dignity. It held a closed seminar concrete themes and perspectives relating to equity on this theme on August 17, 2000. A final document and human dignity in the health care sector which (?) was produced from the seminar to provide a have played a key role in its own discussions during basis for public debate on ethical issues of principle. the first two years of its work. The document invites contributions to the debate from all concerned parties: patients, health care The Board should like to draw particular attention professionals, decision-makers, the media and the to the following issues:
Equity and equality The differences in development between Finnish government. We must consider municipality by municipalities caused by the rapid pace of social municipality such factors as the impact of age change have led or are leading to health care structure and unemployment on both resources and inequalities between people living in different parts the level of service demand. Society cannot leave of the country. Medical tests, services and treatment the residents of declining municipalities without may be given under different criteria in different essential services. The issue is one of equity, equality municipalities. Government, both local and central, and securing the foundations of the welfare state. must face its responsibility in a situation where many Government must ensure the development of health municipalities are struggling against almost care in a way that respects human dignity and insurmountable difficulties in the effort to provide complies with both the Finnish Constitution and essential services. Responsibility lies with both local international conventions on human rights. government (the municipalities) and central Resources
The cuts in health expenditure justified by appeal to to the coming changes in population structure and the economic recession continued long after Fin- morbidity. Short-sighted savings could with time land had already moved on to a period of strong prove expensive. Under-resourced health budgets growth, growth which has now continued for an cannot be ethically acceptable. Moreover, a recent exceptionally long period. Attempts have been made ruling by the Supreme Administrative Court (794/ to rationalize a number of functions, and cost- 3/99 27.11.2000) requires the municipalities to effectiveness is certainly important in health care, as arrange for the provision of adequate social and in other areas. Even so, it is clear that the health health care services for local residents. The decisions care sector must be prepared for a growth in service of today will determine the foundations of the care demand and an associated rise in costs in the years systems of the future. Wealth and comprehensive, and decades which lie ahead. This is due above all quality health care both today and in the future.
Vulnerable groups
The general growth in social and economic inequality extremely vulnerable and prone to exclusion. Some in recent years has also meant that certain groups of of these people simply cannot meet the requirements people in the health care sector have become that the present day seems to demand of people.
14 Such groups include the socially excluded, people particular, is a serious social and health problem. with problems of addiction, asocial groups and the homeless. Others are people who have been Meeting the problems of the socially excluded and marginalized on account of age or illness: long-term those facing the threat of exclusion will require action geriatric patients, adults and children with mental both at the broader political level and within the health problems and socially excluded young people. health care system, and also an attitude of Experts tell us that it is the situation of the weakest responsibility towards our neighbours on the part of people in Finnish society that is deteriorating fastest. the general public. Care and compassion are the This should serve as an ethical wake-up call. The most fundamental ethical resources we have. growing problems of young people also present a Systems have a limited ability to help people. We major challenge for health care in both prevention always need the help and care of our fellows. and treatment. Increased substance abuse, in Working life Contemporary working life is extremely demanding perhaps eventually to the end of their working life. and performance-centred. At the same time, some Stress at work and unemployment both also feed people of working age have been pushed more or the problem of alcohol and drug abuse. It is less permanently outside the labour market. Both particularly important to consider the long-term risks these factors create social and health-related posed by the increasing pressures of working life. problems that require action. Employees are This will require a thorough dialogue on concrete expected to display constant flexibility, assimilation issues between health care experts and the of new ideas and fulfilment of performance targets. representatives of both sides of working life. Effective Many employees can adapt to these demands, but occupational health care can be a key factor in for others they are too much, and this leads to reducing risks and supporting wellbeing at work. symptoms of stress, exhaustion and depression, and Quality and efficiency of care The ongoing structural changes in society and in care and the patients’ experience of quality. These are all systems are giving rise to a number of ethical important in their own right, and together they give problems. For example, the running down of rise to quality care in an ethical sense. institutional psychiatric care led to serious problems in non-institutional care due to inadequate resourcing It is important that we research the efficiency of care. and preparation. Similar questions could also arise We must also continue the debate on how to elsewhere – for example, in care for the elderly or measure efficiency and remember that from the point the disabled. These questions need to be addressed of view of the patient’s subjective experience the comprehensively, and this will require additional input sense of being cared for and taken seriously are of into research. prime importance. Human contact and a caring attitude must not be sacrificed for an overly rationalist Any analysis of the quality of care involves several approach. levels: scientific and technical quality, quality in costs,
Wellbeing at work in the health care sector
Health care professionals nowadays are under education, and poor management. The past few enormous pressure in their work. This is due in part years have also seen an enormous increase in the to changes in the structure of society, in population use of short-term contracts for health care personnel. structure and in morbidity, but also to rationalization It is both unfair and, from the point of view of measures and cuts in expenditure. Problems are effective health care provision, unwise to squander caused by poor working conditions, inappropriate in this way the most important human resources and staffing levels, a lack of opportunities for continuing skills in the health care sector. In the absence of
15 radical change, the long-term effects of the present norm for work on a permanent basis. The full human burden on health care personnel could be very cost of constant overwork will only become serious indeed. What staff can manage temporarily apparent years, or perhaps even decades, from now. through a special effort cannot be taken as a general The importance of data collection in health care development
Information technology nowadays provides a administration and in providing a base for balanced considerable extra resource for the day-to-day work development. It is vital that the data collected is both of health care professionals. Even primary health comprehensive and up-to-date. At present, too care can now take advantage of comprehensive, much has to be done based on assumptions and quality databases from both Finland and abroad. guesses. At national level, at least, some information And one of the main areas of development within is produced too slowly, hampering the development health care today is precisely the development of of effective monitoring and measurement. What is information systems. needed is an effective system for ongoing accumulation of data for monitoring the state of the The importance of data collection extends also to health care system. the statistical information essential in health care Cooperation and volunteers Our care systems alone are unable to cope with the knit rural society of the past. Peer support and the constantly growing challenge of providing care and altruistic work of both relatives and volunteers is solace for people in contemporary society. The very important in relieving human suffering and challenge comes both from the concrete change in providing support. Alongside the development of society and from the accompanying revolution in effective treatments and the professional competence lifestyles and values. Caring about and for one’s of health care workers, we must also seek neighbour is neither as easy nor, at the level of partnership between others involved in providing care attitudes, as obvious as it once was in the closely or supporting the care process. Health care and faith in the future
Loneliness is the great epidemic of our age, and this treatment they neither want nor approve. It is makes many people fear for the future. In their therefore vitally important for discussions on science, minds’ eye, they can see themselves alone and technology and planning to be conducted in a way abandoned in their old age or if they should become people can understand. We must be able to seriously ill. Or they may instead be worried about demonstrate to people that they will continue to the fate of their parents or their children and receive humane treatment and care in the future as grandchildren. Some people find it hard to imagine well. We are all entitled to know our rights and the what sort of times and conditions are lying ahead. main ethical principles underlying medical care. Most simply cannot understand the issues discussed by experts in specialized fields. They find both the A healthy community is based on people valuing and language used and the issues themselves frightening. caring for each other. Health care forms an integral With this in mind, it is understandable that people part of this process, and in the years and decades fear a future in which they could be left entirely lying ahead we must do everything we can to ensure without treatment, or else be subjected to a kind of it retains this position.
16 Martti Kekomäki,Chief Administrative Physician Helsinki and Uusimaa Hospital District
CAN WE DEFINE AND MEASURE EQUITY IN HEALTH CARE? Introduction In this essay I consider:
1. why health care equity appears to be a growing concern; 2. whether there are any readily acceptable dimensions for quantifying equity; 3. whether there are any reliable scales suitable for presenting these dimensions; and 4. whether information quantified in this way can be used to support decision-making on health care, and whether it is being used in this way in Finland.
Finnish law defines health care equity as an aspect for care, the concept of equity can also be extended of equality between citizens. Equality applies to the to cover the way in which resources are gathered distribution of services among the population and for the collective funding of services. (From here on provides everybody the opportunity for care I refer to this collective funding with the concept of according to their level of need at any given time. funding ‘pool’.) Neither the law nor any other norm The law accepts that the overall volume of health has a word to say on this. The law also says nothing care is necessarily limited by the resources available on the definition of available resources per se, or on to the municipalities. In addition, the law gives priority how to define their adequacy. Still to be considered to urgent treatment and goes so far as to give those is whether there is any ethical problem attaching to requiring such treatment a subjective right to the self-financing of health care services (i.e. financing treatment. that comes from outside tax-based funding systems) and the services funded in this way. In addition to equitable satisfaction of the demand Why in the headlines? The debate on health care equity is an inheritance allocative efficiency. With government help, the Fin- from the 1990s, when publicly funded health care nish Medical Society Duodecim organized two had to carry its share of the burdens of the recession. seminars on priority setting in national health care, Finnish health care expenditure shrank more quickly which approved the principle of setting priorities as during the first half of the decade than that of any an idea. Equitable prioritization was seen as based other industrial country has ever done in peacetime. around an application of utilitarianism aimed at This was accompanied by a simultaneous increase maximizing the health benefit, understood as the in the technical means of treatment. overall cost-effectiveness of the system as a whole. Although approval of this general aim is important By the end of the 1990s the technical means for for coherent ethical debate, many factors in the increasing efficiency had been more or less used up: equation currently exist only on the level of ideas. treatment was transferred to outpatient clinics and surgical units, large hospital units were closed, and During the recession, the general public had to be treatment periods were reduced in the direction of made aware that there were unavoidable limits to ‘norms’ adopted from other countries (especially health care funding and that — in the spirit of the the United States). Committee on Priorities in the Health Care — care would in the future have to be ranked in order of When the technical means of increasing efficiency priority. On hearing this, many must have begun to had been largely used up, the focus shifted to fear that old age, the contribution of patients’ own
17 choices in generating certain illnesses, ability to pay believe the media, Finnish incomes policy has turned and other such factors could form obstacles to a corner: after decades of reduction, income receiving the best possible treatment. differentials have begun a steep rise. This also makes people wonder whether ordinary members of the Now is also an appropriate moment to consider the public will still get access to treatment when they issue of equity in light of the redistribution of income need it. currently under way in Finnish society. If we are to
Equity assessment of the funding pool and its ramifications
Equity can easily be presented as an entirely volatile funds from this common pool is triggered by the mental construct, and the assessment and health need of a ‘stakeholder’ in the pool, but still measurement of equity thus as an impossible task. I requires specification by an expert — the doctor do not entirely agree with this view. — before final disbursement can take place.
In my opinion the whole problem of health care In respect of the dimensions of equity, the funding equity is closely linked to the existence of the third pool is an essential structure. Equity can in principle party to the equation, the funding pool. We do not touch on two distinct processes: 1) how resources worry in the same way about equity in housing (as are gathered into the pool, and 2) how the resources long as everyone has some sort of roof over their thus gathered are subsequently used. Special head), nutrition (as long as nobody starves to death) consideration should also be given to considering or clothing (as long as every Finn has at least whether members of the public should be entitled to something to wear). All three areas we have simply use their own legally earned income according to left to the mechanisms of the market. In these areas their own discretion to purchase health care services the market is seen as by far the best way to arrange from outside the common pool. Some may consider for the distribution of commodities in society. this question entirely superfluous, as the answer is According to the general perception, only those in so obviously “yes”. immediate danger require some sort of direct support in order to afford such commodities, It is nevertheless worth posing the question of rationally functioning markets being sufficient to meet people’s use of their own private resources in very the needs of everyone else. In practice, nobody clear terms. If we approve such use, we thereby discusses equality in reference to these issues. also approve the principle of inequality in health care services. Furthermore, we also approve the Why is this so? The decisive factor cannot be the inevitable consequence that in a market-based threat these problems pose to the health or life of democratic system the debate on equity must the individual, as lack of housing, clothing and food perforce be restricted to discussion of the common at latitudes over 60° north will statistically speaking pool — or pools, if, as in Finland, funds are collected lead to death more quickly than lack of health care and disbursed in more than one way — the flows of services. The difference is actually best explained money into the pool, and the services funded from by the inefficiency of the market as a mechanism for it. The third consequence is that services produced distributing health care services: demand for services outside the pool can pose a threat to the volume of is, at the level of the individual, typically operations within the pool. If the overall volume of unpredictable, the costs considerable, and the health care were to be limited by a scarcity of certain average consumer largely dependant on the opinion production factors, for example a shortage of of experts in seeking the appropriate services. And doctors, this could threaten the overall volume of health care experts can scarcely be equated with services provided within the pool, and by extension sales personnel in food or clothing stores. access to these services. The pool would either have to reduce its service output or acquire increased Thus, all post-industrial societies gather health care resources via the political process. The relative level resources into a common pool by some sort of of resources within the pool would not affect the collective decision. The subsequent disbursement of equity of its service provision; instead of plenty, the
18 pool would merely move over to distributing scarcity.
Measuring equity
1. Distribution of services
Gavin Mooney has presented his well-known based on definite biochemical quantities (e.g. multilevel interpretation of equity in service reduced kidney function) or other unambiguous distribution. In the present context, a recognisably laboratory results (e.g. cancer). The latter group of Finnish interpretation of equity would be that the services, distributed on average inequitably, is in pool is distributing services in an equitable manner contrast characterized by differences within the when it satisfies the same health needs of different medical profession on the need for treatment, or people in the same way. But it is worth noting that diagnosis based not on numerical quantities, but on Finnish law is less strict in its definition of equity. It is hermeneutic interpretation. As the inequitable sufficient that people have equal opportunities to distribution of services is not due to deliberate receive services; with the exception of urgent malevolence, we can expect the gradual treatment, the law says nothing of satisfaction. harmonization of diagnostic criteria in the future to facilitate greater equity in the distribution of these Some of the health care services funded from the services too. In this sense, we can put our hope in Finnish pool are distributed more or less equitably, the development and harmonization of national and some not. The former are characterized by life- international recommendations on care. threatening illness (e.g. heart attack) and diagnosis
2. Funding
The normative basis that we can use in assessing This can be summed up by saying that the pool funding equity is, if anything, even shakier. Some operates on a distinctly egalitarian principle: from analysts have sought, and derived, assistance from each according to their ability, to each according to international comparisons. These have shown that their needs. tax-funded systems are either neutral or slightly progressive, social insurance systems slightly A glance at the break-down of funding in the 1990s regressive, and voluntary insurance systems (Uni- indicates a clear change: growth in patients’ own ted States) clearly regressive in their funding effect. share of the costs of medicines and travel expenses, If desired, we can measure the equity of funding by the shift in the tax burden from taxes on work to the relative distribution of the funding burden across taxes on consumption (value-added tax) and the cuts income classes. It would also be possible to set the in government grants to the local authorities equity goal of Finnish health care funding as a neutral combined to turn a marginally progressive system funding effect. (Such neutrality would, however, not of health care funding into a slightly regressive one. alter health care’s position as a massive system of Assessed thus, the aim of equitable funding as defined income transfer due to the mirror-like social above can be said to have retreated slightly during distribution of income differentials and service the past decade. needs.) Can equity assessment provide support for political decision-making?
In a democracy, the political system uses the of services and the neutrality of funding could be legislative process to channel public opinion, and accepted as some sort of norms in a society such as especially public interpretations of equity, into social Finland, marked by an internationally unusually large praxis. Viewed thus, it would seem natural for health measure of agreement on the provision and funding care equity, too, to be effectively monitored by the of health care services. machinery of representative democracy. It would also seem natural that both the equitable distribution Even so, this assessment is only partly true. Both
19 politicians and the general public have at times found in the equity of the service system. it hard to understand that the debate on equity can only refer to funding pools, that Finland has several The KELA (Social Insurance Institution) funding such pools, and that the regressive element in funding pool, on the other hand, presents more of a problem can also be increased or reduced by decisions at than the pool funded by the local government municipal level. There is a dearth of analytical debate municipalities. In addition to the services already on all levels. On the contrary, there is an almost mentioned, KELA also reimburses travelling convulsive wish to adhere to the status quo, and expenses and medicine costs and pays a variety of some people have clearly not grasped the changes daily allowances to compensate for loss of earnings. taking place in the world. It is very important to note that reimbursement of travelling expenses and medicine costs is, from the One example of this analytical weakness and an perspective of equity, quite a different matter from accompanying paralysis in decision-making is the the reimbursement of doctor’s fees. Reimbursement increasingly serious shortage of doctors in Finland. of travelling expenses represents an attempt to At the same time as the public sector is suffering enable people living in outlying areas to gain access from a flight of doctors to the private sector, the to health services of any sort. In contrast, as the private sector is being publicly supported through private sector has not so far offered any tax breaks. Thus, public ‘decisions’ are reimbursable service forms that the public sector simultaneously pushing doctors out of the public does not also provide, patients’ turning to the private sector and drawing them into the private, leaving in sector for services represents a matter of preference their wake complaints about both a lack of doctors between forms of service rather than a straight choice and a growing inequality in health care. What, then, between access to service or no service at all. There to do about this? As I outlined above, we all have is thus a real difference in equity between the right to use our own legally acquired assets as reimbursement of travelling expenses and we see fit, provided we harm no-one in the process. reimbursement of doctors’ fees. To recap, private medical services undoubtedly have a place in a good society, and those who wish to The difference is, however, reduced to some extent seek services in the private sector must be afforded by the 2001 Budget, which brings a major slice of the opportunity to take out insurance to cover their dental care within the KELA funding pool, as the possible service needs. But, whereas in other public sector is unable to offer an adequate volume Western countries private health insurance is of services. Admittedly, this has also been claimed voluntary and confers no right to tax relief (which is for several years now in respect of the services of always regressive in its effects), in Finland subsidy consulting physicians, as much of a third of which is drawn from all taxpayers in the form of distrainable are KELA-supported. However, the distribution of taxation. Every year, 70—84% of people use no these services is so skewed both regionally — the private services, but most of this group, too, will net recipients of KELA funding are under 50 contribute to funding these services. municipalities grouped around the university hospitals, while the poorest 400 municipalities are The clearest, quickest and politically most acceptable net contributors — and in terms of consulting solution would be to make payment of the insurance speciality, that there are good grounds to doubt the contributions conferring entitlement to reimbursement validity of the claim. of private medical costs voluntary. This would place funding and service distribution in the private pool As rapidly updatable information is readily available on an equitable footing and bring Finnish practice on the flows of money and services under the various into line with other Western countries. The funding pools, this information can be put to good consequent reduction in subsidy for the private sector use in assessing the equity of the system. Decisions would result in lower private sector pay for doctors, on normative issues, such as the acceptability of reducing the attraction of the sector and increasing funding neutrality, must of course be left to our the supply of doctors for the public sector while at representative political institutions. the same time bringing about a measurable increase
20 Martti Lindqvist:, Chairman of ETENE
KEY ISSUES IN HEALTH CARE ETHICS
Introduction
Many slogans and characterizations have been used in an attempt to encapsulate the age in which we live, all of which capture something of its kaleidoscopic appearance. However, all of these images are to some extent incomplete. There is always another side to things, something different and opposite. This is due in part to the pace of change, and in part to the fact that we have entered an age in which the world — including Finland —is different to different people. This is why ethical debate is so important, as there is no longer a single correct and complete description of the world or of ethics. We can only continue with this shared process and endeavour to sustain creative and determined debate.
Even so, I shall take the liberty here to say a few words about my view of the age in which we live.
The most visible features of our times are on the the status of something dull and marginal. This is one hand a techno-economic rationality that has also accompanied by an accumulating burden of mental developed into a criterion of the good, and on the and spiritual distress. In part, this is an immense other hand a transient and instrumentalizing lifestyle weight of loneliness generated from many very centred on enjoyment and pleasure. People appear different contributing factors, and in part, a as their social roles, which are constantly changing, multifaceted, and for many people constantly and through which it is hard grasp the real person. accumulating burden of failure, inability to cope, Some have made the constant changing of role anxiety and a sense of being left behind. In the light identities into a way of life. There is also an of all this, it is no wonder our care systems are facing expectation of performance, efficiency and a a continuing and growing flood of deprivation and constant drive onwards and upwards, while on the mental health problems. other hand we are adrift in the transient moment, unconnected to the past or the future. The market I find myself troubled by the still continuing references has no native land, and the marketplace of today is to the recession when discussing the health care global. Its morals are shaped by the rules and problems of today. The recession ended years ago. customs governing trade at any given time. We are now in a period of growth and for the most part facing the problems associated with such times. Market valuation easily spills over into human The talk of recession is mere obfuscation. relationships, too, and into other non-material values such as culture and religion. People are willing to However, I have no wish to moan about the times pay for what is in demand and in short supply. That we are living in. Each generation lives in its own age. which is in overabundance and is overlooked arouses There have been both better and worse times in the no interest or demand. This market orientation in past. But this time is ours, and we must base our the prioritization of values relegates the everyday to actions on the realities of the present. Realism and idealism Ethics exists in the tension between realism and prevailing realities and genuine limitations will be of idealism. On the one hand, it ought to expend a lot little practical use. The main problem with broad of energy on considering ideals — ‘the best possible declarations and lofty ideas is that they have no world’ — however naive this may seem. But, on practical effect. They merely exist in their own world the other hand, an ethics that fails to take account of of ideas.
21 An effective ethics must often demonstrate a cold- the hope of reward, fear of punishment or outside blooded realism. We must be prepared to examine control, but from people’s own will and commitment. ugly, controversial and unpleasant issues, because The more such ‘natural legitimacy’ is undermined, evil is the unavoidable shadow of good. The concrete the more we will need legal controls and all the related rooting of ethics in everyday life, the procurement consequences. of valid and rounded information on prevailing conditions, and the charting of practical alternatives It is unrealistic to expect that health care could are all very important issues. survive as some sort of separate enclave abiding by a different system of values or different rules of the In relation to the law, ethics has two main functions. game from the rest of society. The values of the age On the one hand, the process of ethical debate and will inevitably permeate health care as well, if a little reflection precedes the later crystallization and more slowly in the public than the private sector. enactment of legislation. The ethical process thus However, this does not mean health care has to be leads to concrete law. The legitimacy of society merely a passive observer of what is happening in requires that legislation be genuinely based on a living society. Those involved in the health care arena can and respected moral reality. But on the other hand, join the debate and highlight the experiences and ethical debate can also begin where the law leaves observations the sector has of Finnish society and off. Ethical responsibility is not limited to legal its development. Health care professionals have a responsibility. Therefore, every individual and wealth of untapped knowledge, understanding and community must generate an ethical understanding wisdom about life. and autonomy that does not derive primarily from Why the focus on human dignity and equity? Human dignity lies at the heart of all health care, people in the everyday world and on the margins of constituting both its foundation and its purpose. Care society. This approach resolves the majority of the systems, traditions and philosophies have arisen most important questions relating to human dignity. because individual human beings have been considered so valuable that they cannot just be left And what about equity, or, as it is more commonly to the mercy of their sickness and suffering. Even referred to in the political arena, justice? A small care which utilizes the best tools of diagnosis and word, perhaps, but one which looms large; it is highly complex and advanced methods of treatment constantly being bandied about by politicians, but must never remove the individual human being from somehow always seems to defy precise definition. the heart of the care process. In actual fact, this heart Every age must define for itself its own interpretation embraces both those giving care and those receiving of justice, and this inevitably places justice at the it. Finland’s Act on the Status and Rights of Patients heart of political discourse. Health care professionals provides a solid legal basis for this view. It also have perhaps been too flexible and uncritical in the provides much of the foundation for our work in face of the growing inequality clearly visible at ETENE. We must never allow ourselves to get so present both as a general trend in society as a whole, enraptured with the cutting edge of research, media and especially within the health care system itself. It sensations or the issues raised by huge amounts of is time to speak of justice. money that we forget the importance of caring for
Issues related to human dignity The first shadow hanging over human dignity comes similar dynamic around the idea of the ‘interesting, from the public conception that only independent, cooperative and readily treatable’ patient. Even the productive, economically self-sufficient and care system itself generates its own outcasts and ambitious people really matter. Health care gets to ‘enemies’. These are often awkward, hard-to-treat see the other side of the coin, the people who cannot patients with multiple problems, who are vulnerable manage on these criteria. At the same time, within to prejudiced attitudes. In these cases, the carer’s the health care system itself, we find a somewhat shadow falls between them and those in need of
22 help. Ethically important issues from the perspective of human dignity in Finnish health care include at least the following:
· The labelling of people on account of a moral, social, lifestyle or mental health problem, and consequent harsh or unfriendly treatment (e.g. criminals, antisocial people, people with alcohol or drug problems, or people with serious psychological symptoms ). Discrimination is evident both in attitudes and at the level of decision-making. · There are evident problems of human dignity in the conditions of care and attitudes towards chronic geriatric patients. The problem of being socially ‘buried alive’.
A quote from the Finnish bishops’ statement ‘kohti yhteistä hyvää’ (towards the common good) from 1999: “There is more to life than buying and selling, consumption and markets. The human being is also a giver and receiver of gifts, a carer and nurturer, a playful companion.” Issues related to equity If we view the present situation globally, we cannot little say on where our society is headed. The fail to notice how poverty, inequality, ignorance and contented majority are holding firmly onto power injustice are throughout the world the main causes without any notable qualms of conscience. of underdevelopment, sickness, poor health care, suffering and early death. Although here in Finland Health care is marked by a certain dynamic that, the situation is not so stark, the basic mechanisms although it doesn’t relate directly to the care of are the same. When people lose their faith and are patients, nevertheless underlines the importance of forced to live in absolute poverty, there’s precious equity as an issue. The competition between little that can decisively improve the level of health professional elites and the dynamics of the and care. The example of Russia demonstrates that pharmaceutical industry and medical technological even relatively technologically developed societies development create enormous extra cost pressures can take a turn for the worse. Development is not and can inhibit the solution of some problems, always a one-way street. although they undoubtedly also help find solutions in other cases. Their effect is thus ambivalent. I agree with those who have drawn attention to the However, together with the ageing of the population problem posed by the division of our country into and the falling birth rate, they mean that 10-20 years 2/3 who feel they are doing well and keeping abreast from now we will inevitably be facing an of developments and 1/3, comprising a broad range unprecedentedly serious problem of prioritization. of different sorts of people, who have in fact very We must prepare for this responsibly and rationally. Ethical problems relating to equity include:
· Working life has become extremely demanding, separating people out and acting as a fairly merciless consumer of human beings. Employers are very keen to get hold of employees’ health data. · Medical science, medical care and biotechnology are an enormous international business with their own practices and values that do not necessarily chime with the strivings of societies towards equity and justice. · The illusion of the altruism of carers and researchers has been shattered. Financial irregularities and abuses are well known. · The equitable dovetailing of private and public sector services is no easy task.
The widening economic gulf between regions of the country and the continuing flood of people into population and growth centres is exacerbating the problem of inequities between regions.
23 Autonomy, freedom and abandonment
Health care ethics in western countries has perhaps the individual’s right to freely agree or refuse tests been too narrow in concentrating almost exclusively or treatment became the ethical foundation for all on the principles of autonomy and self-determination, medical tests and treatment. Historically, this which, despite their importance, are in danger of represented a major step forwards compared with degenerating into a purely formal legalese. The the previous highly reactionary and patronising concept of a free and independent individual practices of treatment and care. directing his own destiny is historically speaking rather young. Certainly, human dignity has been In recent decades, as the world has become more emphasized for thousands of years. Christianity in technical and economic perspectives have been particular raised it as a central theme two thousand emphasized to an extreme degree, the principle of years ago, but, until the Enlightenment and the French freedom has taken on a very mechanical Revolution, the individual was really viewed as an interpretation. The consent of the patient is inseparable part of his own community, estate, increasingly seen as merely a routine part of a destiny and the eternal world order. He could be his technical treatment process. The patient is furnished own self only within the parameters of these spheres. with factual information on his illness and the available treatments on the assumption that he will It is thus no surprise that the present day has adopted be capable of deciding on his own treatment. In Fin- as the centrepiece of its ideology of progress the land, the Act on the Status and Rights of Patients freedom and right to self-determination of the passed in 1992 is based on this key principle. individual human being. According to this way of thinking, the human person is an open book, and I do not seek to criticize the principle of self- through his choices writes his own history. He is determination, which protects the patient from abuses radically responsible for both the happiness and the and is intended to give him an active role in treatment unhappiness of his life. The current success decisions. But I believe it is important to understand philosophies and free competition liturgies are a that help for a human being cannot be based on just direct application of the modern intoxication with a single, isolated principle — and far less on its freedom. mechanical application. Alongside self-determination, the principles of the common good, community and This has also left its mark on the philosophy and equity, among others, demand to be taken just as ethics of medical care. After the Second World War, seriously. Problems The information society paradoxically gives rise to self-fulfilling. a problem of ignorance. Because knowledge is money and power, people are increasingly excluded Depression and psychological and social deprivation by their ignorance and lack of competence. lead to a cycle of problems. People begin to repeat their failures and then seek relief through ‘solutions’ People excluded in this way easily become prey to such as alcohol and drugs. dependency, depression and loneliness. The logic is In conclusion Above all else, we must speak up for a caring culture, the rule of law, security, basic justice and protection an approach to life that emphasizes a sense of of the weak. community and social solidarity. There are no outside means or resources that can replace the loss of such It is important to remember that even if resources vital features. We are actually speaking here on behalf were not as limited as they have proved to be, the of factors fundamental to the very survival of our very nature of ethics involves a basic tension that society and culture. It is the role of society to ensure requires the balancing of different quality
24 perspectives. The core concepts in this tension are inherent in human life, despite the rosy visions of the common good, the rights of the individual and science fiction. Nature, history and the universe itself equity. If we are to have a chance of preserving the are all on a much vaster scale. The individual human wellbeing of our society and sustaining a human being is but a fleeting and fragile figure in the great quality of life, our social ethics must protect all these flow of life. All existence is transient. To deny this values. would be both dishonest and unethical.
No health care system can meet all our needs and Realism, the urge to learn and a willingness to accept expectations, let alone free us from the limitations the facts are excellent allies for an effective ethics.
25 Riitta-Leena Paunio:Deputy Parliamentary Ombudsman EQUITY IN HEALTH CARE
Underlying principles
The underlying principles on which I base my assessment of health care equity are the fundamental rights guaranteed in the Finnish Constitution. It is, after all, the job of the Ombudsman to ensure the implementation of these constitutional rights by those carrying out public duties. Viewed from this angle, equity in health care essentially means equality: equality in access to services and treatment, equality in individual treatment solutions, and equality in the quality of care provided. Equality is particularly important for the members of vulnerable groups: people who are weak or vulnerable for a variety of reasons, old people, the disabled, children and all who are unable to take care of themselves.
A number of WHO publications also set out from the principle that equity in health care means equal access to the available treatment for those with equal needs, equal use of services by those with equal needs, and equal quality of care for all. The point of equity as an objective is to reduce unnecessary, avoidable, unreasonable and unfair differences in health (Margaret Whitehead: The concepts and principles of equity and health. Copenhagen World Health Organization, Regional Office for Europe, 1990).
Equal access to treatment The right to equal access to treatment can be derived derogation from these principles. For example, in from sections 6, 7 and 19 of the Constitution. Equal the area of primary health care the criteria for treatment and the inviolability of human dignity are acceptance for treatment mentioned in the legislation cornerstones of our system of justice. There is are the nature of the illness and the need for tests, nothing in health care legislation that would justify treatment and medical rehabilitation. It is nevertheless clear that, for instance geographically speaking, people do not enjoy equal access to treatment. This can be readily illustrated by a number of issues that have come to light during the course of my own work: · for some illnesses there is regional variation in the per capita numbers requiring treatment; · there are significant regional differences in involuntary psychiatric care and access to care for children and young people; in some areas there have been cases of people having to wait up to six months for treatment, while in others adult psychiatric care or placement in a reformatory are seen as alternatives to psychiatric care specifically tailored to the young; · there have been serious inadequacies in the provision of treatment for gravely psychotic and violent young people and young people suffering problems of alcohol and drug abuse, including the type of inequality outlined above; · moreover, there has been absolutely no provision of specialist care facilities for children and young people needing forensic psychiatric care, or catering to the care needs of hard-to-treat or dangerous children and young people; · there are also regional and other differences in provision of transport for mental health patients: the long distances involved or other reasons have at times led to the provision of transport by the police instead of in an ambulance; · the treatment provided for drug and alcohol-related illnesses has in general been both inadequate in volume and ineffective in content; it is worth considering the relative significance in this respect of the inherent difficulty of treating such cases, inadequate information on the demand for services and the criminalization of drug abuse.
26 Equality in quality of treatment
Equality in the quality of treatment received is hard reasonable to expect a certain minimum level of to assess, as the treatment required inevitably varies quality from all treatment. At the very least, treatment from one illness to another. It is, however, surely should not violate human dignity. I present below some useful examples to illustrate the problems experienced by people in the vulnerable groups referred to above: · studies have revealed mistreatment of old people in social welfare and health care institutions, including neglecting to ensure adequate intake of liquids and food, and neglect of basic hygiene and safety; it can also include rudeness, indifference and unfriendliness; · in involuntary psychiatric care, isolation is used in order to restrain aggressive patients and control their destructive behaviour; at its worst this can mean isolation in a very small, bare, foul-smelling room, from where the patient cannot communicate with care personnel other than by shouting or banging on the door; isolation can also take the form of strapping patients to their bed for days on end; · the wards in long-term psychiatric care can still be large and noisy, and, depending on staffing levels or other factors, patients may be unable to get out of the ward each day to take exercise in the open air; · there are also similar problems in institutions providing special care for the mentally handicapped. In such cases, we may well ask whether the quality focuses on vulnerable groups such as those of, for example, care for the elderly or specialist mentioned in my examples above. psychiatric care is really acceptable. The answer is clear: in view of the wealth and standard of living of The issue in the problems highlighted by my examples our country, care of this nature cannot be considered could also of course simply be a case of established legally acceptable. practices and approaches to care, as studies have shown is indeed the case in respect of the isolating I should like to emphasize that one of the functions of patients in involuntary psychiatric care. There are of health care is to care and provide solace for the clearly regional variations in practice, and this has incurably ill and to alleviate pain and suffering; it is been shown to be due to just such differences in not only concerned with prevention and cure. For established practices and traditions of care. This this very reason, it is vital to demand quality not only brings us back once again to the question of regional when we are endeavouring and able to heal the sick differences. Given that isolation represents a (e.g. when treatment is machine-dominated, acute considerable interference in a person’s freedom and and ‘dramatic’). Quality and effective care are just integrity, there is surely no justification for the regional as important in situations where the focus is on differences that exist in isolation practices (e.g. providing solace, and indeed always where care isolation in a room/strapping to a bed). Equality in individual care decisions
And what of equality in individual care solutions? constitutional rights? Do old people, people with disabilities, or any other people suffer discrimination on account of their In my work I have come across such claims by personal characteristics in contravention of their individuals, as the following cases show: · a 78-year-old patient was refused dialysis; the doctor initially justified this decision by reference solely to the available financial resources, only later adding the further justification of treatment- related reasons; · observed flaws in tests and treatment for a patient’s heart disease were claimed to have derived from the attitudes of the health care staff towards the patient’s age and dementia (there were undoubtedly shortcomings in the treatment provided, but these could not be shown to derive from
27 the reasons claimed; admittedly, one of the doctors who had treated the patient said in defence of his/her own conduct that the hospital did not have the financial resources to implant a pacemaker in every “demented old person”). The ‘demented old person’ in this case was actually a 60-year-old employed woman whose paramnesia was largely due to her depression, and partly to her chronic heart disease, of which she later died; · there have also been a number of other cases in which a doctor has expressed the opinion that it was for the best for the patients themselves or for their relatives that a hard-to-treat, perhaps multiply handicapped or aged relative had died, thereby relieving their relatives of a number of worries; · some discussions on medical law and ethics have raised the proposal that patients’ ‘utility’ to their families or to society as a whole should be one of the criteria of selection for treatment.
In my opinion such views are not acceptable from the equality perspective. I believe it is important for people to be able to trust I consider equality in care solutions to be of central in the realization of equity and equality in care importance to the issue of equity in health care, an solutions. This is one of the essential requirements issue directly related to the implementation of for the credibility of the entire health care system. I constitutional rights. I consider it particularly also take the view that we cannot accept as an important that those patients who are unable to underlying principle that individual doctors’ own defend or supervise their own interests are not placed assessment of the ethical foundations of their work at a disadvantage to others. All possible steps should can be used as the basis for individual care solutions. be taken to reinforce equality in decisions on treatment and care. Each decision affects a valuable Equality and the prohibition of discrimination have and unique human life. been reinforced, making them together one of the main principles in the Constitution of our country. I refer here to the section on health care in the This being the case, we can presumably agree that Parliamentary Ombudsman’s Annual Report 1999, the only prioritization in individual care solutions that which discusses cases relating to this theme. The is consistent with our values and our thinking on Annual Report can be read and printed off from the fundamental rights is one which focuses on the illness, Parliamentary Ombudsman’s website at the need for treatment and the effectiveness of www.eduskunta.fi. treatment. This leaves us with the question: can this be realized in practice, and, if so, how?
28 Appendix: Members of ETENE:
National Advisory Board on Health Care Ethics (ETENE) 1.10.1998-1.10.2002
Chairman: Deputy Chairman: Docent Martti Lindqvist Archiatre Risto Pelkonen Mäntyharju Kauniainen Members: Deputy members: M. Sc. Sinikka Lylys M.D. Kaisa Määttä Mäntyharju Helsinki Social Worker Tarja Sipponen Secretary Sirkka Puolanne Tampere Lahti Chief Doctor Markku Oinaala M.D. Pirjo Pyöriä-Haukemaa Rovaniemi Lappeenranta M.D., Ph.D. Tapio Tervo Director of Social affairs and Health Erkki Torppa Jyväskylä Hämeenlinna Director of social affairs and health Juha Metso Specialist, M.D., Ph.D.Ritva Valavaara Espoo Turku University Central Hospital Chief Physician Helena Kääriäinen Professor Hannu Hausen Väestöliitto, Helsinki University of Oulu Deputy Chief of Dept. Marjatta Blanco Sequeiros Chief Physician Vuokko Rauhala Sosiaali- ja terveysministeriö, Helsinki Central hospital of Central Finland, Jyväskylä Emeritus professor Erik Anttinen Scientist Olavi Lindfors Rantasalmi Helsinki chief executive officer of nursing Kaija Nojonen Dr. of health sciences Aira Pihlainen Tampere City of Helsinki, Dept. of education M.D., Ph.D. Pekka Louhiala Professor Juhani Pietarinen Assistant professor, University of Helsinki University of Turku Professor Raimo Lahti Professor Martin Scheinin University of Helsinki Åbo akademi, Turku Justice Marita Liljeström Dr. Jur. Raimo Pekkanen Supreme Administrative Court, Helsinki Espoo Docent, research director Anneli Sarvimäki Social worker Outi Viitaharju Kuntokallio, Helsinki Riihimäki Hospital chaplain Sirkku Eho Arch bishop Leo Rovaniemi The Orthodox Church of Finland, Kuopio MP Riitta Korhonen MP Pirjo-Riitta Antvuori Parliament of Finland Parliament of Finland MP Tuula Haatainen MP Saara Karhu Parliament of Finland Parliament of Finland MP Anne Huotari MP Pehr Löv Parliament of Finland Parliament of Finland MP Jaana Ylä-Mononen MP Merikukka Forsius Parliament of Finland Parliament of Finland
29 Appendix 2: How to contact ETENE
General Secretary: Secretary Ritva Halila Nina Lindqvist e-mail: [email protected] [email protected] tel. +358 9 160 3834 +358 9 160 4357
Address: National Advisory Board on Health Care Ethics Ministry of Social Affairs and Health Kirkkokatu 14, Helsinki PO Box 33 00023 Government tel. +358 9 16001 (switchboard) fax: +358 9 160 4312 Internet: www.etene.org
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