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On successful completion of this module you will be able to:

1. provide an overview of the field of ethics,
2. state several principles of ethics of particular relevance to PHC, and
3. identify the ethical issues in a number of PHC practices.

1.0 Introduction

This module will begin with a brief overview of the field or discipline of ethics. We shall then briefly discuss a number of ethical principles which are of particular relevance to primary health care, indeed to any practice of health care. The module concludes by raising a number of ethical issues which impact directly on health or are encountered regularly in clinical practice.

Whilst this module is presented relatively late in the semester, this is not intended to discount its importance. Its lateness reflects two factors. The first is the need to present as much information as early as possible in the semester which will directly inform practice (and clearly not everything can be done at once). The second is the realisation that at this stage of your career or studies you have already been introduced to ethics such that it already regularly informs your practice.

2.0 Ethics: An Overview

This overview owes its brevity to the fact that you have already studied ethics earlier in your studies. Accordingly, only an overview is offered here which should serve as a revision of your knowledge. Hopefully such revision will assist you to consider the issues we shall discuss later.

Ethics may be described as a field, a discipline or even a profession in which one can encounter specialists, such as medical ethicists for example. It is also known by the name of moral philosophy. Many people unfortunately have the mistaken view that philosophy is a dry, boring and frightfully bookish pastime which is of ultimately little value to those who roll up their sleeves and get into the dramas of life. This is most regrettable ignorance since there is little of more practical value than philosophy. However we cannot dwell on this point here; suffice it to say that ethics, in as much as it deals with health care, is an intensely practical subject which addresses and informs one's actions in day to day practice.

2.1 Structure of Ethics, the Discipline

Perhaps the best way to present the structure for the purposes of an overview is diagrammatically. Consider the following.

Overview of Ethics

Those areas of the discipline of ethics which are of particular interest to us are within normative ethics. This is the area where ethical principles are derived which purport to guide our day to day professional actions.

For all norms of obligation the central question is:

What is the right thing to do?

The answer depends on what is considered right, ie on the ethical values of the doer.

Deontological theorists or nonconsequentialists define right by considering the intrinsic features of an action, largely independent of the consequences. These theorists generally refer to some ultimate source of authority in defining right and wrong, eg God or humanistic principles. Their concern is not with consequences of actions but with deriving and following rules and duties.

Teleological theorists on the other hand, also known as consequentialists, define right in terms of "goods" produced as a result of an action. That is, they calculate the probable outcomes of possible actions and choose the one that will maximise the ratio of benefit over harm. Perhaps the best known form of teleological ethics is utilitarianism, with its claim that one should always act to ensure the greatest good for the greatest number.

2.2 Some Important Reminders

Of all the possible aspects of ethics we could revise, the following three points seem to address areas which cause students the most problems. Let us remember that:

1. The language of ethics is logic. This is perhaps unfortunate for those with no formal background in logic since it can make ethics seem somewhat remote. For now however, let's just remember that ethics is never based on emotion. The issues dealt with by ethics may be highly charged with emotion but the analysis of ethics is dispassionate.

2. As the great philosopher and scientist David Hume said: "One can never derive an ought from an is". This may seem cryptic, but it simply refers to the naturalistic fallacy. This is perhaps the greatest undoing of otherwise well meaning medical and health practitioners who have become so blinded by what they take to be science that they mistake what can be done with what should be done. Remember, it is never acceptable to conclude that something is right simply because it is scientifically or technologically possible.

3. Ethical relativism is untenable. The suggestion that ethical truth is relative to, in the sense of being a function of or causally dependent on, something (such as a person's cultural tradition for example) is not acceptable since it logically denies the very existence of something which can rightly be called ethical truth. Ethical truth is not something like cultural values. We may meaningfully describe a person's values as relative to the culture in which they were developed, but ethical truth cannot be regarded in a similar way. This is an error made by many who sink into situational ethics, the "ethics" of the moment and times. The principle of universality is related to the rejection of ethical relativism. This principle basically states that if an act is right, based on ethical truth, it will be right everywhere and at all times given the same conditions and not subject to situational change.

3.0 Common Ethical Principles in Health Care

Probably the five most common ethical principles in health care are:

1. The value of life. This speaks for itself but it is sometimes important to be reminded that much of the efforts of health care are directed at preserving life. Indeed, most health care practices could be described as being designed to extend the quantity or enhance the quality of life, or both. These efforts are justified by the conviction that they are the right things to do. Naturally, sometimes it is helpful to open this to debate. The polarity of views on issues such as euthanasia and abortion, for instance, enables us to sharply clarify just what we think is right and why. This empowers practice, whatever the direction of the conviction.

2. Goodness (or rightness). There are many goods recognised in ethics, such as life, truth, knowledge, beauty and self-expression, just to name a range. From these goods you will recall we derive certain classic shoulds in health practice, such as:

   • we should prevent harm or badness
   • we should cause no harm or badness (nonmaleficence)

   • we should promote goodness over badness (beneficence)

3. Justice (or fairness). The principle of justice, also known as fairness, is quite challenging. It is a principle that people like to believe in but often don't practice. In ethics we confront the reality that one cannot be good without being just or fair. The practice of rationing scarce health resources unavoidably has ethical implications, it is not simply about economics.

4. Truth telling (or honesty). This is another major principle of ethics which many people take lightly. One frequently hears phrases like 'taking the truth lightly', 'white lies', 'they're better off not knowing the truth', 'tell them what they want to hear', and so on. These smack of hypocrisy, paternalism and self-interest but are so common they tend to go unchallenged.

5. Individual freedom (or autonomy). The right to self-determinism is is based on the ethical principle of autonomy. It is an extremely important right, the loss of which can be quite dehumanising. This is a right that is frequently challenged by health care personnel in practices as diverse as health promotion and transfusing people against their expressed wishes.

Activity 8.3.1

4.0 Ethical Issues in PHC

Since you will have developed methods of analysis to be used in ethics in previous years this section will simply present a couple of issues which aim to be thought provoking. Hopefully by briefly revising your studies of ethics and focussing your attention on areas of direct relevance to PHC we will provoke a raised and thoughtful level of awareness both in your practice and of the practices you encounter.

4.1 Vaccination or Immunisation

This is a contentious practice. It is rare to encounter informed debate on the topic. The orthodox health care proponents of vaccination attempt to occupy the moral high ground but have yet to put forward an intelligent case informed by ethics rather than misinformed by emotion and science (and rather poor science at that). There is no prize for those who detect some bias here!

Far too many health care professionals engage in the practice of vaccination simply because they are expected to as a part of their position of employment, satisfied that it is the right thing to do on the basis of very superficial information and little real thought or investigation. This is unacceptable, especially when so many people are clearly opposed to vaccination. Clearly this is a practice about which one should be quite satisfied that it is ethically correct, or otherwise, and then be willing to accept responsibility for one's actions.

One might imagine that one who is so in favour of PHC would actively promote vaccination, the perfect prevention. Far from being the optimal prevention of illness, vaccination is actually a procedure of some risk, sometimes much more risk than is expected. Downie and Calman (1987, 198) correctly state that "Vaccination against specific diseases potentially confers great benefit on the community. On the other hand there is often a risk to the individual". There are known risks such as mild fever, malaise, meningitis and death due to anaphylaxis. There are also unknown (though strongly suspected) risks, such as various cancers or immune deficiency disorders and their sequelae. Downie and Calman (1987, 201) acknowledge this in part when they say of prevention that one...

The frequently repeated claim that vaccination is responsible for eliminating disease must be treated with some caution. Although widely believed to be true, this does not make it true. The reality is that it probably contributed significantly, but how significantly it is impossible to say. The claim is reminiscent of similar claims for antibiotics. In both cases the situation is clouded by a number of other public health measures that were introduced around the same time and which we also know played a significant role in eliminating disease. Factors such as improved sanitation and housing, improvements to water purity and to diet to name a few, clearly had dramatic effects on health but could not so easily be linked to medical income and power, as vaccination and antibiotics.

It is important to remember that these other measures are still significant today, in all societies. There are also many people who claim, evidently with some justification, that alternative prevention measures such as homoeopathic preparations are both effective and safe.

One should also consider the fact that widespread vaccination can actually increase the risks associated with the disease it is designed to prevent. The classic illustration of this is the use of the rubella vaccine. Contrary to popular opinion, this vaccine is not given primarily with the immediate aim of preventing recipients from getting rubella, since rubella (or German measles) is not such a serious disease in itself. The real aim is to reduce the incidence in society of congenital rubella syndrome, which can affect the foetus of women who have rubella during pregnancy. Knox expressed it as follows.

So, should we knowingly cause some harm and loss of life in the short term and risk more harm and loss of life in the longer term in order to prevent some infectious diseases? Should we do this when we know that some of those diseases are themselves not especially serious or likely to occur? Should we vaccinate some people knowing that we are thereby increasing the level of risk for others? Should we do any of this when there are possible alternatives, just because people with vested interests insist and engage in scientific lies, emotional blackmail and blatant use of power to persuade us to do so? If one were to adopt a utilitarian approach, would the principle of the greatest good for the greatest number perhaps mean that we would need to perform a risk analysis and only consider use of vaccination at times and in places for people assessed as at high risk?

These ideas are not orthodox. The standard line is for nurses to follow the directions of the medical profession and to promote and administer vaccination. However, this is an abrogation of responsibility, highly unprofessional and somewhat misguided, since many members of the medical profession are quite uninformed on these matters. The right thing to do in the first instance is to take action to become adequately informed and then to act as you think right, able to take responsibility for what you do.

4.2 Polio Vaccination: A Case Report

The ABC television program, 4 Corners, on Monday 13 April 1998 provided another dimension to the vaccination issue, or at least highlighted one that is ever present. In the 1950s and 1960s hundreds of thousands of Australian school children were lined up at schools and injected with the Salk vaccine against poliomyelitis (typically just called polio). The public is now learning that:

1. much of the vaccine was contaminated with SV40 (Simean Virus 40),
2. this virus is linked with very deadly cancers in humans,

3. the Australian authorities knew in 1961:

   • that the vaccine was contaminated, and
   • that authorities in other countries had changed to alternative vaccines,

   but they continued to authorise its use until 1963.

Whilst the Australian history raises serious doubts about the ethics of vaccination authorities, the global context is also worth reviewing. Consider the following:

• The vaccine was developed in the USA by Dr Jonas Salk, who tested it in what he called 'experimental medicine', on two million children. The success in eliminating the polio epidemic was hailed as an heroic achievement, making Salk famous.

• The vaccine was prepared on the kidney cells of dead monkeys, some of whom had been infected by the monkey virus known as SV40 but this was not at first detected. The virus became a live contaminant of much of the vaccine stock.

• 17,000 Australians contracted polio in a world wide epidemic. Polio was a devastating and much feared disease that caused muscular paralysis, leaving some crippled and others dependent on iron lungs (cumbersome but life saving respiratory ventilators).

• Dr P. Bazeley was an Australian who worked with Salk. On his return to Australia he was received as a national hero. He brought a batch of the vaccine with him and he brought the expertise to enable its production at the Commonwealth Serum Laboratories which released the first batches in 1956.

• Also in 1956 in the USA, Dr Eddie, a government scientist, began to suspect something was wrong. Her next four years of research proved alarming. She found that SV40 was in the Salk vaccine and that it caused lethal tumours in the lungs, brains and bones of mammals. Disturbingly:

  • Dr Eddie was alienated by the authorities and silenced. Her:
  • laboratories were removed,
  • laboratory workers were reassigned,
  • authority to research and declare vaccines safe was removed.

  • Other scientists saw this and backed off this area of research.

• By 1960 other scientists around the world had also found the problem. By 1961 the contamination was found to be vast. Authorities agreed to screen the vaccines to eliminate the contamination but noted that once SV40 infects a person it cannot be removed.

• Between 1955 and 1961 120 million people were injected with potentially contaminated Salk vaccine.

• Most of the decisions taken about vaccination are actually made by governments and politicians, often amidst public hysteria. This was true in the 1950s and 1960s and it is just as true in the 1990s. (Consider the recent efforts by authorities to increase the vaccination rate in the population, the increased pressure put on parents of school starters in NSW to vaccinate their children, recent use of reports of tuberculosis outbreaks by health authorities to stimulate vaccination uptake generally, and so on.)

• The finding in laboratory mammals of a link between bone, brain and lung cancers and SV40 are now being made in humans, and the rate is increasing. It is likely to increase further as the bulk of the infected population enters their 50s, 60s and 70s.

• The main lung cancer implicated is mesothelioma. This is a very aggressive and incurable cancer which causes a great deal of pain in the usual 9 to 12 months between diagnosis and death. This cancer was typically only associated with exposure to asbestos but over 10% of cases in Australia are now unrelated to asbestos. In the last 20 years the incidence of this disease has increased seven fold, now at 350 cases annually in Australia, but it is a worldwide trend.

• Recent findings suggest that it may not be a problem confined to the injected generation, say of your parents age perhaps. Evidence now suggests that infected parents may hand down the SV40 to their children. The live SV40 virus is now being found in the bone tumours and brain tumours of the children of parents who were given the Salk vaccination.

4.3 A Collection of Issues

It is not the proper role of this subject to dole out predigested answers to ethical questions. Instead, an attempt is made to raise questions about ethical practice in PHC in the hope that you will be stimulated to think about the ethics of practices which all too frequently people are expected to simply accept unquestioningly.

The ethics which people call upon to inform their behaviour reflects the level of moral development they have achieved. The developmental psychologist Lawrence Kohlberg provided a developmental analysis of human moral development. He described six stages of potential moral development organised within three levels called preconventional morality, conventional morality and postconventional morality (Kohlberg & Gilligan, 1971). The level at which many health professionals may be observed to function appears to be as follows:

It may be sobering to realise that many adults, and among them health care professionals, actually function at the level of moral development of a 12 year old. Yet this is what happens when people are willing to base their behaviour (and justification for it) on the basis of following the directions of accepted authority, rather than accept genuine informed responsibility for it themselves.

The following is a brief collection of issues related to various practices in health promotion, an area where health professionals like to think they occupy the moral high ground.

1. Fluoridation. Public health authorities have persuaded many governments, from local to national levels, around the world to fluoridate water supplies for the claimed benefit of reduced incidence of dental caries. Assurances of safety have been accepted by some and rejected by others. Something we are rarely told in Australia is that some countries actually made it illegal to fluoridate water supplies, so convinced were they of the long term ill effects. Orthodox authorities typically insinuate that opponents of fluoridation are cranks who reject the benefits of science. They insist that fluoridation is safe, even though it is one of the deadliest poisons on earth. Whoever is right about the scientific or clinical arguments, there is an ethical dilemma. The addition of fluoride infringes individual rights. If one adds fluoride to public water supplies the dental caries rate declines but some people will object to the practice. If fluoride is withheld, some who are concerned about dental caries will object. How can this be resolved? Is it reasonable to infringe individual's rights for the public good? What conditions would justify this?

2. Child abuse and neglect. When parents fail to provide adequate care for their children, how far is the State warranted in intervening in the physical and emotional health of the child? Clinicians regularly see children who show signs of physical and or emotional neglect or abuse. At what level of risk should one take care of the family and the child and risk provoking separation of the child from the family, for its own safety? Whose right are to be protected and at what risk or cost in terms of violation of the rights of others? Sadly, this is a difficult situation which frequently is not solved satisfactorily. Many children continue to suffer because the rights of the family are given precedent over the rights of the child; family autonomy wins over state paternalism. Sometimes state paternalism dominates and families are destroyed, with little evidence that the child benefits at all.

3. Screening for disease. This is a practice which on the surface seems to have no problems. In fact there are a few problems with the practice, such as:

   • The false negative test. In these cases the test result is normal and the person is given the 'all clear' when in reality there is disease present. The person is therefore actually harmed by the advice they are given since they are denied treatment which might be more effective if commenced early in the disease process.

   • The false positive test. In these cases the test indicates that disease is present when in reality there is none. The person is subjected to worry, perhaps more invasive tests and expense and possibly treatment for a condition they do not have.

   • Maldistribution of the screening tests. This is the problem whereby members of the community who are at highest risk are not actually the ones targeted or reached by the screenings. Instead, the screening resources may be used performing screening on low risk groups. The disadvantaged are denied justice or fairness.

5.0 Feedback Exercise

The material from the 4 Corners program is not presented above to distress you or to cause alarm. Hopefully you will find it shocking, for shocking it is! Sometimes we need to be shocked out of our complacency. It is too easy to simply believe that health authorities and governments are superhuman and not subject to the usual human weaknesses, that they always know what's best and have our best interests at heart. If you actually think that way, say hello to Santa for me next Christmas.

As difficult and demanding as it may be, ethical behaviour does not consist of surrendering one's autonomy and accepting the paternalism of more knowledgeable experts. One of the burdens of being an educated person who lays claim to professional status is the responsibility to become adequately informed to make ethically sound and defensible decisions in one's practice. Those with a genuine commitment to PHC will also be willing to empower others with this knowledge.

The following activity is an invitation to demonstrate acceptance of the challenge this presents.

Activity 8.5.1

Use this link if you want to send e-mail to the Subject Coordinator. (removed)

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