Thursday, August 29, 2013
QUALITY OF LIFE MEASURES IN HEALTH AND THEIR APPLICABILITY TO NON-WESTERN SITUATIONS
Katele Kalumba, Senior Fellow
Dept. of Community Medicine
University of Zambia, Lusaka.
A major health transition thesis has been promoted for sometime since the 1980s (Caldwell & Caldwell, 1989; Terris, 1983; Commission on Health Research for Development, 1990). It stipulates that differences in mortality rates among rich and poor countries are paralleled by differences in disease patterns. In the early stages of development, infectious and parasitic diseases coupled with malnutrition predominate, affecting especially infants and children. As income levels, environmental conditions and life styles change, problems of infectious diseases and malnutrition are contained, and non-infectious diseases such as malignant neo-plasms and diseases of the circulatory system emerge as principal causes of illness and death, affecting both children and adults more than ever before. The many chronic degenerative diseases of later life progressively limit mental function, physical mobility and vision.
A report of the Commission on Health Research For Development (CHRD,1990) drew attention to the fact that in developing countries, both stages of the health transition were occurring within very severely limited human and financial resources. High mortality of mothers and children from preventable infections and malnutrition and from closely spaced pregnancies persists among the poor. For those who survive, there is the demand for health services to treat the chronic diseases. Above all developing countries face problems that have thus far received little attention. These include: tuberculosis, parasitic infestation, problems in women's health, injury, blindness, mental illness and other disabling illnesses. New problems such as AIDS and a fresh appreciation of emerging threats such as tobacco and illicit drugs, occupational hazards, and environmental contamination are excessively taxing the capacities of developing and developing countries.
These health trends must be seen within the context witnessed particularly since the decade of the 1980s. Ecological failures such as droughts that sometimes have given rise to food scarcities and other sanitation-related problems; increased use of all forms of technology, increased demands for human rights particularly with respect to women's health; re-privatization and/or decentralization of health care services and payments and the re-emergence of private clinics side by side with public health infrastructure; a growing number of urban and the rural poor as a consequence of the down-classing of the middle-class; dwindling real material investments by external Non-governmental and intergovernmental agencies, among other trends suggest that a much more sophisticated understanding of quality of life issues as they apply to developing countries in Africa is needed.
The concept of transition also underlies Maurice King's argument that 'Health is a sustainable state' (King, 1990). King argues that part of the developing world is also going through a three-phase ecological and demographic transition. The first phase, according to King, involves expanding human demands within the carrying capacity of the ecosystem. In the second phase, demands exceed the sustainable yield of the ecosystem. While human demands expand, biological reserves are consumed ever more rapidly. In the third phase, human consumption is forcibly reduced as the ecosystem collapses. If we accept the premise that Zambia like many other African countries are faced with this demographic-ecosystem and epidemiologic transition of coping with communicable and non-communicable health problems, then we must begin to narrow the conceptual gap between Western and non-Western quality of life threats.
2. QUALITY OF LIFE ISSUES: CONCEPT AND ITS UNIVERSALITY?
A key defining concept of health in Alma Ata Declaration on Health For All (WHO, 1978) is "well-being". Closely related to well-being is the concept of "quality of life". Quality of life refers to a composite of measures of physical , mental and social well-being (Szalai & Andrews, 1981). Yet, attempts to operationalise this concept has to a large extent focused on physical indicators. In the Global Strategy for Health by the year 2000 (WHO, 1981), at least 13 indicators of 'quality of life' are suggested for European regional strategies. These are:
1. Proportion of persons disabled as a result of permanent impairment- in selected groups
2. Incidence of waterborne diseases
3. Percentage of population in households with an adequate water supply of safe water
4. Percentage of households with an adequate waste disposal system
5. Percentage of population exposed to given levels of selected pollutants
6. Percentage of children below a certain nutritional state- by age
7. Birthweight in selected groups
8. Absenteeism from work
9. Absenteeism from school
11.Levels of education in various groups
12.Percentage of population satisfied with their own level of health
13.Percentage of people over 70 years with low dependency status
Except for item number 12 in the list above, these social indicators are constructed as objective measures of social circumstances. Advocates would say they are adequate in helping us to map out variabilities within populations, to identify inequities, to anticipate public demand, and to predict trends. They are applied to the assessment of quality of life on the basis that as the level of education rises, the adequacy of medical care improves, the amount of substandard housing is reduced, and the purity of water and air is increased, quality of life will improve. This belief in objective measures circumvents one key observation that quality of life lies in the experience of life (Campbell, 1977). While these conditions might be assumed to influence life experiences, they do not assess that experience directly.
Advocates of psychological measures insist that there is a difference between the objective circumstances in which people live and their experience of these circumstances. Angus Campbell (1977) concluded after his American study that: "the major determinants of well-being are psychological rather than economic or demographic" (p334). In Campbell's (1977) study, at least three major dimensions of the "experience of well-being" were identified:
1. Satisfaction with ten domains of life (eg. work, marriage, housing, community, health, standard of living etc.) has an essentially cognitive quality.
2. Experiencing pleasantness of life is a measure of the affective quality of life (Life is interesting, enjoyable etc).
3. Absence of perceived stress is an affective-physiological quality.
Campbell stressed that
"people living in different life circumstances express different patterns of well-being and that these patterns reflect the peculiar quality of the situation they live in"(p334)
In a discussion of Campbell's work, Ansbacher (1977) suggested a recasting of the findings particularly on the use 'absence of perceived stress’ as a dimension of well-being. Following Hans Selye's (1956) dictum that stress is part of life... a natural by-product of all human activities, Ansbacher (1977:345) concluded that:
1. Satisfaction with life as a cognitive dimension of well-being, increases throughout the life circle and remains high even at the stages where "experience of pleasantness" --an affective dimension of well-being, declines.
2. "Perceived stress" is better understood as a concomitant of intensity of living ( vitality) than as a component of reduced well-being or unhappiness.
3. Persons who do not successfully meet or fulfill one of Alfred Alder's three life tasks, love and marriage ( others are work and friendship) are likely to be low in physiological well-being.
Two issues I would like to return to in the preceding discussion. The first is the role of stress and the second is the situational interpretation of experience. Ansbacher seems to suggest essentialism. The fact that stress occurs with the intensity of living does not make the experience of stress any more satisfying or pleasant. The occurrence of a common cold in every day life does not make it any more acceptable. The linkage between stress and other health problems particularly in the occupational literature has been strongly established (Coburn, 1981; Kalimo et al, 1987).
On the situational interpretation of experience, literature seems to suggest that we bear in mind that the same factor may be good for some and bad for others, good in some situations and bad in others. According to Levi (1987), cultural factors strongly condition attitudes towards specific situations such as work environment. But again how much do we know about the conditioning influence of culture in the face of rapid social change. The transition thesis seems to suggest that we do not overstretch the etic-emic distinction in matters of health. The question is: can we identify cognitively and affectively universal intrepretive structures of experience?
Recent studies and documentation based on evaluations of the living conditions in low-income settlements (Carballo and Martin-Lira, 1984; Rossi-Espagnet, 1986; WHO, 1986) suggest that social and cultural disintegration and impoverishment, whether in urban or in rural settings, violates adult mental health. According to these studies, at least three major pathological consequences of low-income settlements characteristic of rapid urbanization in Africa and other third World countries support the transition thesis. First, there is the continuation of diseases of poverty such as gastro-intestinal infections. Second is the emergence of chronic degenerative diseases associated with poor living and working conditions. Lastly, there are conditions associated with the stress precipitated by social isolation, insecurity, dissolution of primary relation of family and cultural conflicts (cf. Ekblad, 1990). Does this transition suggest a convergence in the perception and experience of stressors which would suggest that certain objective events have tendentially, similar significations for health cross-culturally?
Berry's work (1974) hypothesized a crucial link between the ecological demands on a cultural group and the socialization practices of that group. In turn, these demands and practices shape the characteristic manner in which the group perceives and interprets events and phenomena occurring in their everyday lives. The concepts of field-dependence and field-independence follow from this work and refer to varying degrees of perceptual discrimination. For Berry, variations in perceptual interpretations are inextricably linked to the complex interaction of ecological and societal factors that determine the cognitive development of a subject within some culture.
Berry's work would lead us to reject any cultural convergence thesis. But a critique of this work on field-independence/dependence has been that it is essentially centri-cultural acquiring "unattractively ethnocentric overtones" (Serpell, 1977; Ciborowski, 1979). One question we need to ponder along this line is that: is there a point beyond which an event, such as the fact of crowding, would signify a stressor for a Chinese just as it would for an American or African child? Christopher Alexander (1974) argued that certain built environments such as urbanism generate overtime, universally valid psychological experiences like the phenomenon he called autonomy-withdrawal syndrome which greatly threaten the social human nature. The differences that may be observed from one urban context to another in this case, becomes simply a question of degree.
That there may be universal perceptual signification in health is suggested in one study in which Zambia participated. Between 1981-2, an international collaborative study, "Recording Health Problems Triaxially" under the auspices of the WHO Mental Health Division, developed an instrument which allowed for the recording of social and psychological problems alongside with physical ones. These problems were presented in the form of 50 international case vignettes from Africa, Asia and the Americas which had been selected from 340 collected. These were then presented to primary health care workers in seven countries for rating. What came out of that study is the high degree of inter-rater reliability on psychological (0.73), social (0.75), and physical (0.78) scales. While these high correlations would be said to overshadow a wide range of reliability across specific categories of measurement, individuals, workers and countries, the overall correlations suggest, even if partially, the limits of cultural mediation in certain interpretive schemes of health workers (WHO, 1983; Freund and Kalumba, 1982) .
QUALITY OF LIFE CONCEPTS: AN EXAMPLE OF APPLICATION TO ZAMBIA
One area in which quality of life concepts have been suggested for application is in the management of disabilities. In the management of childhood disabilities, the concept of eco-culture seems to have emerged. The application of this concept entails an appraisal of the child's behavioral repertoire as it evolves within its cultural and physical milieu. A child's 'developmental niche' consists of various "interlocking and embedded systems: care-giver-child microsystems, family and friendship networks, instructional programmes, career paths etc" (Serpell and Nabuzoka, 1989; cf Heron and Myers, 1983; Super & Harkness, 1986).
Community-based rehabilitation (CBR), formed a major thrust of the application of the eco-culture concept to the enhancement of the quality of life of disabled children. Serpell and Nabuzoka (1989) have reported the application of the assessment technology and intervention of CBR in Zambia. A Home Environment Potential Assessment schedule (HEPA) was applied in an evaluation of the impact of CBR. This study revealed the high reliability and validity of locally developed schemes for assessment of the current level of functioning of Zambian children with intellectual disability and of selected features of the child's regular affective environment. The authors report that:
Factor analysis of the scores on relatively reliable items within [HEPA] scales, by rural and peri-urban samples in three ecologically and culturally contrastive regions of Zambia, generated two recurrent factors across age groups (0-2, 2-6, and 7-12 years). One factor, loading heavily on the scales of Emotional Support, Individualising and Responsibility Training was tentatively identified as representing an underlying dimension of active 'Promotion' of the child's personality. The other which loaded heavily on the scales of Physical Support and Framing, was interpreted as reflecting a dimension of family 'Stability' (Serpell & Nabuzoka, 1989:3-4).
The compendium of assessment batteries developed after the initial national campaign to reach the disabled child, followed from empirical observation of health worker assessment performance. While most health workers were astute at assessing physical disabilities over the age of 5 years, they had great difficulties in grasping problems of hearing, speech and intellectual functioning. One key lesson of this exercise is that it is wholly feasible with effective training of health workers and the development of appropriate assessment instruments to apply a fairly complicated scheme of quality of life intervention in Zambia. Serpell's (1983, 1986, 1988) argument in this respect would be that the limits of quality of life measures would be internal to their centri-cultural design than to their strictly scientific applicability. Scientific applicability calls for eco-cultural adaptation. The question here is not 'either-or' but : to what extent can quality of life measures developed in one culture be modified to respond to the specificities of a given eco-culture?
THE NEED FOR MORE INNOVATION IN HEALTH: A FINAL NOTE
The need to explore new ways in which the concept of well-being is to be advanced in countries such as Zambia is driven by very objective factors. In this section, I want to argue that these factors make imperative certain and wholly acceptable silences on arguments about cultural fragility. Great cultural upheavals are taking place whose consequences can not readily be predicted.
Three major trends appear to pose serious challenges to health and the to the quality of life in Zambia in general. The first major trend affecting quality of life is clearly the economic process of structural adjustment which has introduced stiff economic policy measures. These include the decontrol of prices , devaluation of the national currency, removal of food subsidies, and cost recovery in social services such as health. These and other fiscal policy measures have unpredictable effects on prices and income, money supply and inflation, Zambia's balance of payments, and employment. Above all, they have potentially far‑reaching consequences for the continued provision of curative and preventive health services and on the nutritional status of children and women.
The growing demand for increased public revenue and reduced economic distortions through a greater reliance on user charges for public services and restructured general tax systems presuppose public institutional/managerial capacities for the definition of clear priorities and concentration on quality for efficient and effective public spending. Such adjustments entail policy changes in the health sector whose impact would raise issues of social entitlement (as rights), political relations, population effects etc. Zambia has already experienced political upheavals with very momentous consequences for the political system arising out of popular disenchantment with deteriorating conditions of living.
The second major trend is demographic. The past two decades have shown a rising population growth rate currently estimated at 3.2 per cent per annum. A high fertility rate of 220 per 1000 women aged 14‑49 accounts for much of the population growth pressures as are more enabling factors such as culture. Current figures suggest that 20 per cent of the population is under five years. The social service needs of such a large number of children are immense and likely to increase in the 1990s.
The third trend is the emergency of new viral and aggressive parasitic infections such as HIV/AIDS and chloroquine resistant malaria and tuberculosis. These epidemiological trends pose new threats to public health and to child care in particular. One emerging consequence of HIV/AIDS specifically, is the inevitable increase in orphaned children. The decade's new "Children in Distress" , will themselves either be victims of the HIV virus or of the effects of loss of parental care, including malnutrition and psychological trauma.
The rise of AIDS has also compounded the crisis of restorative medicine. At personnel level these epidemiological trends signal health worker stress or "burnout" in the face of increasing mortality. The current medical profession's attempts at developing guidelines and policies to deal with AIDs is challenged by the dearth of systematic research on the effect of the disease on physicians' attitudes and practices. These issues deserve sustained attention at the level of policy and research. The critical question is to what extent are conventional forms of health care adequate to meet what is emerging as a complex demand structure of physical, social and psychological problems in the population?
If the ultimate goal of our health system remains that of creating a healthy future for ourselves and our children, then active efforts at imaging desirable trends to improve the quality of life of people in Zambia and other developing countries, ought to be explored.
As in all areas of human intervention, there are bound to be serious obstacles in exploring any new strategy for a healthy future. The first is the lack of public/community understanding about health, illness and human potential. There are still deeply rooted beliefs in Zambian society which functions to support the view that health and illness are not subject to individual control. Beliefs in witchcraft cut across various segments of society.
Secondly, there is the dependence upon a mechanistic paradigm and mythology of medicine that gives undue emphasis to the role of medical professionals to exclusion of other disciplines. Hence, there will be need to increase awareness of the impact of personal behavior (lifestyle) on health and well-being; provision of more public health-relevant information leading to greater awareness; and application of quality of working and social life concepts in social and economic policy interventions.
Dogmatic/traditional thinking and expectations about the health care system as well as lack of cooperation, collaboration, communication and inappropriate competition between health care providers within the modern health system as well as between traditional and modern systems are obstacles likely to hinder health improvements. There are in contrast, many positive impacts of technology on communications, diagnosis and treatment; recognition of the differential roles of social categories such as women and children in health promotion in addition to greater consumer power in health services which are trends likely to facilitate the process of attaining improvements in thinking about the nature and realization of well-being.
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SAY YOUR SAY, IT IS YOUR HEALTH: AN APPRECIATION OF MEDIA CRITICISMS OF HEALTH REFORMS.
Health Reforms at Work! This was the optimism Boniface Kawimbe and I had in 1992. A new beginning for the health sector. How does a vision of public health reform erode so quickly? Our learned readers of Zambian print media have been treated to a mixed grill of in-depth critical reviews of Zambia’s health reforms. From our colleagues in The Post, we heard Gilbert Mudenda's indictment of what he terms "cosmetic" changes, and Carolyn Banda's dissection of the Health Bill published in the media by no other than the then Minister of Health Michael Sata appeared to raise a “red card” on health reforms as early as 1995. Her conclusion was simple, donors back off, because the said bill has nothing to do with improving health services. From the Times of Zambia, and during the same year, we read Gondwani Chirambo's critique of health financing schemes: they are good and they are bad because they hurt the poor. Well, something along that line. Between 1998 to 2000, hell had broken loose for the health sector. The real crush came with the junior doctors strike and their subsequent dismissal. What went wrong? The ideas of health reforms as formulated in 1991-1992 or leadership? Reading from our media, the answer has been difficult to come by.
I have great respect for all these colleagues for their genuine attempts at trying to decipher what Zambian health reforms were about and to be able to be conclusive about the underlying substance or lack of it. Some years ago, 1991 to be precise, when at the aegis of UNICEF, I wrote about the dynamics of demand regulation in basic education policy, I recall reading Professor Kelly's words about basic education in Zambia. He wrote: “A declining economy and an expanding population are on widely diverging tracks. The gaps cannot be spanned by tapping additional sources within the public semi-state, private or foreign sectors. What is needed is something that Zambia has not yet thought about, a new method of making educational provision that will make a much smaller demand on resources than the traditional hierarchic institutional modality that few have dared to question”. I agreed with Professor Kelly's analysis. Lazy thinking is one of the greatest dangers to development. The challenge for Zambia's health development was similar to that facing education but even somewhat more complicated by the extent of entrenchment of professional elements..
For Health sector, continuing with reforms is an imperative to effective health services delivery and to prospects for improving health for Zambians. The questions they have raised are begging for answers. And, only bold, clear minded leadership across the board is needed to address the many complex issues in Zambian health reforms.
In the midst of the growing revisionism, I wish to spend time to restate what health reforms were about and to challenge my colleagues who are critical of the path we took as Ministers of Health then that they address themselves to the central rather than euphemeral issues. I will define what I think,, is the impetus which drove our new vision for health reform.
Aware of the four major factors of macroeconomics, epidemiology, envornment and demography as determinants of health problems in Zambia, the MMD government reformulated our national health policy in a manner that made certain things do-able. The impact of macroeconomic distortions, epidemiology,enviroment and demography have always been facilitated by more specific institutional processes. The proliferation of health providers, the changing patterns of health work and in particular the Third World conditions of health work forced upon the MMD health policy makers the need to recast our health vision in the context of quality over and above the quantity of services provided. The MMD reforms in health care which had received international acknowledgement, were based upon a simple but fundamental vision. This vision was ans still remains to provide Zambians, with equity of access to sustainable and cost-effective quality health care as close to the family as possible.
Equity of access does not mean giving every Zambian village an ambulance and a surgeon. It means providing opportunities for those who seek to use health services, a choice to do so without discrimination. Health for all, implicit in this access principle does not mean equal health. It simply means that within our socio-geographic boundaries, we can access affordable health care when we need it.
Equity of health policies has always been a difficult concept. Our understanding was that equity refers to the extent to which no group or individual receives less than a minimum benefit level or a maximum cost level of health care. We can thus talk in terms of equity of health benefits or equity of health costs. Hence, in access terms, a basic level health package for all that is optimally costed for users minimises the equity constraints for society while allowing for those who can afford higher cost services to have that choice on the principle of individual responsibility for health.
The policy implications of equity of access to cost-effective quality health care rests upon a resolution of a complex equation involving efficiency, effectiveness and equity. The issues here rest upon a combination of possibilities: that a society can allocate benefits more equitably through increasing the amount of benefits , reducing the population, or diluting the level of benefits. And that a society can distribute costs more evenly by decreasing the sum of the total cost burden, or increasing the relevant (contributing) population in order to spread the costs broadly, or raising the cost level that the members of society are willing to accept. User fees, cost-sharing schemes like prepayment, and many other initiatives like the Mwase Mphangwe Initiative as an in-kind payment for health had all been attempts at figuring out the most satisfactory ways to keep both benefits and costs of health equitably distributed.
The second principle is cost-effectiveness. Health care, costs money. The vehicles to transport the sick and medical supplies, the autoclaves, orthopaedic tables, catheters, antibiotics, and so forth, all cost a lot of money. Someone pays for these services. In Zambia, it is the individual and corporate taxpayer. The more we tax these people in order to provide free health services, the less money there is in savings for them to invest in improving the economy. Needless to say, that what they pay in tax is not enough to meet our national health costs.
Some of our people may not know that if a Zambian goes to the rural health centre anywhere in the country today as was the case in the 1990s, and gets herself a tetracycline, it is probably paid for by the Swedish and Dutch taxpayer and not by Zambians. That is a fact. But do the people in Sweden or the Netherlands owe Zambians their health? They have carried us this far out of goodwill. As Zambians, we have to pay for the costs of the panadols we consume. As long as we can answer how cost is efficiently and reasonably distributed, we also address the question of sustainability.
Cost-effective health care means tailoring our health services according to our means, doing what costs less but provides results intended or desired. If more Zambians, apart from the few taxpayers who now do, contributed towards the costs of services they use, we can have more and better services. Our health services now operate in the same manner as when one man or woman works to feed a household of twenty adults. In this household, no one else wants to work or contribute. The fact is, one day, that person will collapse.
Zambian taxpayers, who are estimated at 350,000 are fed-up of higher taxes to support free services for almost 13 million Zambians. And I think, when they complain, we all agree, pointing fingers at the government as a culprit. True, waste in government is part of the problem but free services are a much larger burden for the few in comparison to the cost of government bureaucracy. It is a concern today of course that in the quest for decentralization, we have increased the ci]ost of government by creating unsustainable District administrations. Each new district means new infrastructural demands. The demand culture in our country is based upon the philosophy of entitlement. Zambians insist that government provides more and better health services without putting a price on it for the majority to pay. The assumption is that government makes money on its own. It doesn't. The people of Zambia make money. The more people make money and contribute to the cost of health care, the more and better services we can all have access to.
In addition to asking more Zambians to contribute, cost-effectiveness also means improved efficiency in the management of health resources by health workers. Poor prescription practices, inefficient surgical procedures, incompetence, pilfering of supplies, all cost the taxpayer more money. The patient who is not properly treated will stay longer in the hospital or come back sooner rather than later at an even greater cost to the taxpayer.
That brings me to the other principle, quality care. Quality in health care is the effectiveness with which we attend to the health needs of the population. For the patient in a clinical setting, quality care means the absence of side-effects arising from treatment, ( in technical terms iatrogenic effects), it means a reduced stay in a hospital bed, a positive feeling about the amount of attention received and the way it is provided. It also means access to services when a patient needs them; acceptability of services to the patient; a voice or say in the treatment provided, and last but not least, trust in those treating you and caring for you. When these things are not experienced by the individual who passes through the doors of our health institution, then the job of health care has been less than quality assured.
Finally, our health vision refers to emphasis on family as a focus of our services. The reason is simple. The first health provider is a family member. Sometimes the only "doctor" is a family member who brings home an assortment of herbal medications from the surrounding bushes and beyond.
It is within the family that decisions to take any of us to the hospital are made. It is family members who will pay for transport bills and ensure that after discharge, the necessary home care to ensure restoration to normal activity, including good nutrition and emotional support, are done. And indeed, after all treatment fails, it will be the family that will have to escort us to our resting places seven feet under.
As Zambians, we all know that in matters of health practice, it is often the woman in the household who knows anything about underfive clinics, CDD, UCI, HEPS, and boiling water to prevent cholera. It is this health worker we must strengthen our partnership with, by organizing our health services conscious of the fact that she is only human. If health services are not designed in this gender sensitive manner, they will fail to produce quality care.
At this point, let me turn to the issues of ethical behaviour. If the principles I have described which lie behind our health services reforms are sound, then the professional conditions necessary to effect them must be specified. The existence of health professions presupposes an ethical principle. Yet, on two separate occasions in two Hospitals in 1995 and during the unfortunate doctors strike that was precipitated by the leadership crisis in the health Ministry during the Nkandu Luo-Ernest Mwansa- David Mpamba era, I came face to face with a depressing reality. I was told by some young doctors, "who cares about professionalism". I argued, and perhaps in vain (but I hope not) that that is all that makes a difference between plumbers and medicine men and women.
I understood the anger by the junior doctors. What I have never understood is the zeal with which these three ministers believed firing junior doctors was the best policy response to the crisis in health care that the young doctors had identified in their complaints? It is now with hindsight, interesting, that these ministers were after Chiluba’s failed “Third Term” bid which I personally despised, championing order. Having directly been responsible for firing 300 junior doctors, they now wanted to present themselves as the heroes of the suffering public? God help us. This is just a simple question of leadership.