Catherine Edwards
Newham General Hospital,
Glen Road, Plaistow,
London.
mailto:edwardscath@yahoo.co.uk
I will assess the strengths and weaknesses of Rights Theory when applied to the following problem, a case which as a physician I was involved in recently:
P was an in-patient with a heart problem. We strongly suspected he had AIDS, and he eventually agreed to an HIV test. One day after the test was taken he died suddenly. We received the HIV result (positive) two days after his death. Although HIV was not the direct cause of his death it was certainly the reason he had heart problems. There had been no indication from P of his wishes regarding telling his friends and family. In fact for two weeks he had denied any risk factors for HIV.
A week after his death P’s sister came over from South America and asked to see me. She wanted to discuss the cause of P’s death. She also wanted to know if he had AIDS. Before seeing her I was told by my representative legal body that: my duty of confidentiality to P persists after his death; and I may talk to her about the cause of death only as it appeared on the death certificate (which did not mention HIV). This position stems from the World Medical Association’s International Code of Medical Ethics, which states that confidentiality is an absolute requirement, even after the patient’s death (Gillon 1986, P106, Kuhse in Bioethics 1999, P493).
To examine Rights Theory as it applies to this case, a right must first be defined. A right is a justified claim that individuals and groups can make upon others or upon society (Beauchamp and Childress 1994, P69). Rights provide protection of life, liberty, expression and property, as first set out by John Locke. Moral, legal and institutional rules are created to distinguish valid from invalid rights. The right requires action or restraint from others – that is to say, a duty follows from a right. Gillon describes different sorts of right – legal and institutional, universal moral rights and rights arising from special social relationships – the right of confidentiality falls into the latter category (Gillon 1986, P54).
The case described raised the following moral questions: Firstly, does a dead patient have a right to confidentiality? If so, then the doctor has a duty of confidentiality to him. If not, then the doctor should concentrate on the welfare of his relatives. His sister appeared to suspect already that he had AIDS and she had travelled thousands of miles to know the truth. Does his sister have a right to know, and should the Kantian ideal of truth prevail? Should the ‘public health’ issue negate the rights of P – ie should his sexual partners be informed? Does anyone (including the health care professionals) have a right to know P’s HIV status since he himself did not know before his death? Finally does the doctor have rights – for example the right to tell the truth?
Clearly some of these issues are contradictory, and therefore it is appropriate to look at the strengths and weaknesses of the moral theory in the context of this example (references for next two sections: Almond in Singer, 1991; Beauchamp and Childress, 1994, P69-77).
The strengths of Rights Theory
Firstly, rights have been thought of as moral trumps when an ethical question is in dispute – this was first set out by Ronald Dworkin. In this way a right contrasts with utilitarianism, because the rights of the individuals involved trump the overall consequences. So a utilitarian might say that total happiness is maximised by P’s sister and sexual partners knowing the truth: however, the rights of P could trump this position.
Secondly, every individual involved in this case has been considered in terms of his or her rights and therefore it can be seen as an appropriate moral theory for the health care situation. Also Rights Theory allows the ‘victim’s’ viewpoint to be the focus. In this example it protects P from harm, who is dead and therefore cannot put forward his case. Linked to this is the viewpoint that rights can be applied to all beings, including dead people, embryos and foetuses, and animals. This raises the question of whether a dead person is a being, which is beyond the scope of this essay.
Rights and obligations are correlative – an obligation flows from a right, and this provides clarity in action. For example if it can be agreed that P has a right to confidentiality, then it is clear that the doctor has a duty not to breach this.
The theory also provides a moral framework for law. For example the rights of P have a legal backing. This legal aspect is an essential component of healthcare because it protects the weak. Rights are therefore compatible with social responsibility.
Finally Rights Theory is widely understood and accepted the world over, ie it has a commonality; and is therefore a good basis for discussion of an ethical problem.
…and its weaknesses
Rights theories are often criticised because of the disagreement over who or what has rights – this is particularly relevant in relation to, for example, abortion but is also important here. Some require the capacity to suffer, or the capacity to reason as criteria for possessing rights – this would exclude P from having rights. Similarly, having interests has been used as a requirement for rights, and again could exclude P because he is not living.
Next, rights are applied to individuals. Because of this, the Theory can neglect communal interests and public health, and this is seen clearly here. Rights are sometimes incompatible with social ideals – they do not account for the moral significance of motives and virtues. So they could be seen as minimalist – ie simply statements of the minimum enforceable rules to be observed, and this renders the Theory incomplete.
Further, rights can be relinquished. Although this could be seen as a strength because it allows flexibility, it can also be argued that it invalidates the theory: in this case several people’s rights must be relinquished to reach a conclusion. Beauchamp and Childress call this an infringement (a justified action overriding a right) rather than a violation (an unjustified action against a right). When the infringement clashes with another’s rights, this weakens the theory.
So, the major problem with the theory in this example is this: it does not adequately answer the question ‘Whose rights are more important?’ Clearly the rights of individuals in the case conflict with each other. Unless we have a ranking system of rights we cannot reach a conclusion. This is reflected in the UN’s doctrine on Human Rights: the UN has only one unqualified right – that of the right not to be tortured. Even rights to life and liberty are qualified by the UN.
Also the emphasis on rights tends to encourage pursuance of moral demands at the cost of neglect of duties (Gillon 1986, P56). Rights Theory has been criticised because of the adversarial attitude it encourages, whereby affection, sympathy and trust between the parties are undermined. In the context of health care this is particularly pertinent.
Does a dead patient have a right to confidentiality?
Returning to this question, we have the following factors in favour of respect for this right:
One of the arguments for maintaining confidentiality is the patient’s trust in the medical professional. P’s right to confidentiality is a moral trump, as he is the patient with the problem and the vulnerable should be protected. His trust in the doctor, that was inherent in their professional relationship, is preserved by maintaining privacy. His right as the patient overrides the wishes of his sister, or the doctor’s right to tell the truth. Because his wishes were not known before his death, and because he did not know his HIV result, the moral trump effect of the Theory should prevail to protect him. His right to confidentiality persists in the same way as his right to respect for his body and a dignified funeral. Thus a limit is placed on how P is treated, regardless of the good that might be achieved (Rachels 2003, P108). In other words it is the least interfering way of acting. Further, giving P a right to confidentiality might be a reflection of the desires he would have had were he alive – P is being treated as an autonomous being after his death. Dworkin describes it thus: the former capacity for self-respect requires that we treat with dignity now, in relation to Alzheimer’s patients (Dworkin in Bioethics 1999, P307).
P’s right to confidentiality is backed up by law, hence the Medical Defence Union’s advice.
P’s right to confidentiality can be widely understood in different cultures and societies. It is also a universally accepted right in health care – health care professionals accept the corresponding duty to maintain confidentiality and make efforts not to breach this right.
However there are several factors which go against his right to confidentiality. The most important of these is his death – he has no capacity to suffer or reason and has no ongoing interests; he has relinquished his rights by dying – therefore according to some he is excluded from the language of rights altogether. Tooley calls this the requirement for self-consciousness. He explains that ‘A has a right to X’ is synonymous with ‘A is the sort of thing that is a subject of experiences and other mental states, A is capable of desiring X, and if A does desire X, then others are under a prima facie obligation to refrain from actions that would deprive him of it.’ (Tooley in Bioethics 1999, P24). He also explains that it is the conceptual capability to desire X, and not the desire itself, which is important. This allows exceptions to be made for people in emotionally unbalanced states, temporary unconsciousness and situations where an individual’s desires have been distorted by conditioning or indoctrination. The argument does not include people who have died. P at one time had the conceptual ability to demand a right for confidentiality, but no longer does, and more importantly, never will again. Perhaps it is this last fact which is overriding in the argument that his rights should be relinquished.
The rights of the public
The public health issue could be seen as a moral trump in this scenario –P’s rights are justifiably infringed to protect people that he may have infected with HIV. Although this can be viewed as the rights of the public prevailing, it is probably better described in utilitarian language – in other words the maximisation of total happiness. It highlights again the conflicts between the rights of each party, and confirms that there are very few cases where a right can be justified as absolute (Gillon 1986, P109). This can only act to weaken the Theory. Similarly, the right of P may depend on the nature of his illness. If he had an entirely non-infectious disease, would his right to confidentiality be greater?
The American and British Medical Associations have modified the World Medical Association’s rule on absolute confidentiality, to reflect doctors’ obligations not only to their patients but also to others. The British Medical Association’s guidance on confidentiality states: ‘The ethical duty of confidentiality extends beyond the death of the patient, although legislation covering records made since 1 November 1991 permits limited disclosure in order to satisfy a claim arising from the death…. Doctors may consider disclosure to be justifiable based on the particular circumstances and knowledge of the patient’s wishes…. Often a decision to disclose will not be based on the interests of the subject but is made to protect other people or the public at large. The decision to disclose is based partly on a balancing of several moral imperatives, including the risk and likelihood of harm if no disclosure is made, and the need to maintain the trust of the patient’ (BMA, 1999). This makes clear that doctors are responsible not only for the harm they do, but also for the harm they fail to prevent (Kuhse in Bioethics 1999, P494). This is a description of obligations without reference to rights, and seems to be appropriate for this circumstance.
The right of the sister to know the truth
P’s sister was asking the doctors to be honest about something she already suspected. Armed with the truth she could possibly have gone to his friends and prevented further suffering or death. As his nearest living relative, and with no other apparent motive than understanding the truth, did she have a right to know? If so this would have resulted in infringement of P’s right to confidentiality, and again raises the problem of the ranking of rights.
Whose ‘property’ is the test result – does anyone have a right to know?
Since P was not given his HIV result before his death, it could be argued that no one has a right to know it, and it should not be released at all. He could have died before the test was taken, in which case it would only have been done at post mortem if it were thought to be relevant to the cause of death. So who owns test results after someone’s death? Say this had been a different infectious disease with less mystique and media hype attached to it – would that have altered P’s ‘right’ to confidentiality? Why also were the doctors allowed to discuss the cause of death (on the death certificate) without the permission of the patient? That could also be seen as a violation of his rights.
Does the doctor have rights?
The right to tell the truth (or not to have to lie) may be viewed as important here if the doctor feels moral unease at withholding the truth or lying. The doctor’s rights are in direct conflict with the rights of the patient. Usually this does not cause problems, but in this case the doctor’s right to be an autonomous agent coincides with the truth being told. Although Kant argued that lying was ‘the obliteration of one’s dignity as a human being’ and held that the rule against lying was absolute (Rachels 2003, P122), few would disagree nowadays that the moral rule not to lie has to be qualified by circumstance. However withholding the truth about a dead patient is probably not something of which Kant would approve!
Conclusion
Using the language of rights has highlighted certain inconsistencies and confusion in the approach to this problem, mostly because it has required a ranking of rights, which then forces the rights of some parties to be withheld. It seems difficult to reach a widely accepted consensus on the ranking order, so this illustrates a problem with the Theory in general. In addition it has proved impossible to decide whether the dead patient even possesses rights at all. In conclusion, using Rights Theory is probably not the best way to approach this particular health care problem.
References
Almond, B: Rights. Chapter 22. A Companion to Ethics. Ed. Singer, P 1991. Blackwell.
Beauchamp, T, Childress, J: Principles of Biomedical Ethics. 4th Edition 1994. OUP.
Bioethics, An Anthology. Ed. Kuhse, H, Singer, P. 1999. Blackwell.
BMA Guidance on Confidentiality and Disclosure of Health Information. 1999. BMA website: www.bma.org.uk.
Gillon, R: Philosophical Medical Ethics. 1986. Wiley.
Rachels, J: The Elements of Moral Philosophy. 4th Edition 2003. McGraw Hill.