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«The basic ethical principles In clinical ethics there a number of basic principles, which identify key ethical values. In the most general terms, ...»

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More information on ethics and end-of-life decision-making

Assoc Prof Lynn Gillam

Academic Director and Clinical Ethicist

Children’s Bioethics Centre

Royal Children’s Hospital, Murdoch Children’s Research Institute and University

of Melbourne.

The basic ethical principles

In clinical ethics there a number of basic principles, which identify key ethical values. In

the most general terms, these principles are

• Beneficence – the principle of producing benefit or doing good to the patient

• Non-maleficence – the principle of not causing harm, or allowing harm to occur to the patient

• Autonomy – the principle of respecting the patients’ right to make their own choices about their own lives. Put into practice via the processes of informed consent and shared decision-making.

o Confidentiality and privacy Also grounds the ethical value of confidentiality and privacy, because control of who knows or sees things about oneself is an important aspect of making choices about one’s own life.

• Justice – fairness or distributive justice in the allocation of resources, and of benefits and burdens of health care. Includes non-discrimination.

(Reference: TL Beauchamp and JF Childress. Principles of Biomedical Ethics) These principles provide a broad framework of ethical analysis and decision-making in the paediatric context, but need some adaptation and further specification. This is needed for a number of reasons, in particular because

• The child patient in most cases has no capacity for autonomous decision-making, and so parents will be making decisions for their children. This complicates the principle of respect for autonomy.

• Older children begin to develop cognitive capacities and life skills, and hence begin to develop their own capacity for autonomy. This also has to be considered, and again complicates the principle of respect for autonomy.

• The well-being of a child actually depends to a significant extent on the child’s parents and their capacity to provide care and support, especially in the context of serious long-term condition, chronic illness or disability. So what will benefit a child, or promote his or her well-being, is actually partly determined by the parents – their attitudes, beliefs, skills and abilities, resilience and determination, family circumstances (such as other children), and many others. However, whilst there is this entanglement and inter-dependency of interests, it should be remembered that the child is also a separate individual. The child’s well-being is not the same as the parents’ or the family’s well-being. This complicates the principles of beneficence and non-maleficence.

• Children may have no sense of privacy (either about their bodies or their information) but their privacy is still important. It is also possible, especially for older children, that they may want some degree of privacy from their parents, even though their parents are their medical decision-makers.

Ethical principles in paediatrics Taking into account the ethical complexities of the situation described above, the following would be a more specific refinement of the ethical principles for paediatrics

• Promote the well-being of child (beneficence and non-maleficence) o Act in way that will benefit the child – physically, psychologically, emotionally, socially o Protect the child from harm o Protect future-related interests (things that will matter to them in the future, but do not matter to them now – eg fertility)

• Promote well-being of family (beneficence and non-maleficence)

• Respect parents as decision-makers for the child (autonomy)

• Respect child’s (developing) autonomy

• Respect privacy of child

• Respect the privacy of the parents and family

• Allocate resources at your disposal fairly In the paediatric context, there are some particular complexities in using these principles.

The most obvious of these relates to the principle of respect for autonomy. In adult medicine, this means respect for the autonomy of the competent adult patient. In paediatrics, it means both respecting the right of parents to be the decision-makers for their children, and also respecting the child’s developing capacity for decision-making, and hence their evolving right to be involved in decision-making about their treatment.

However, the parents’ right to be decision-maker for their child is not absolute in the same way as a competent adult’s right to make decisions about him or herself. It is clear in both law and ethics that parents’ decisions about their children can be overridden, if the decision puts the child at significant risk of harm. This because the principle of nonharm to the child is ultimately considered to carry more ethical weight than the principle of respect of parental autonomy. The precise circumstances under which this should occur is contested and difficult to specify (see below on parental rights and autonomy), but the basic principle is very clear: parents’ decisions are not necessarily final, and there are clear avenues for making legal challenges to them.

For an adolescent with developing maturity and decision-making capacities, there are also complexities. The accepted theoretical position in ethics is that the growing decision-making capacity of adolescents should be respected, and that they should be involved more and more in making decisions about their own treatment, as that capacity increases. Finally, they will attain full capacity to make their own decisions, perhaps in many cases before the they reach 18, the legal age of adulthood, at which capacity is presumed to exist. In legal terms, these are the so-called mature minors, who are regarded as having the capacity to consent to treatment independently of their parents, and whose decisions ought to be respected. This is a clear idea in theory, but hard to put into practice. Before the stage of full capacity or competence, there is a grey area, where it is not clear what weight to give to a young person’s wishes or preferences, especially where these are contrary to their parents’ wishes. (see under “When children disagree with parents over medical treatment”) Parental rights and respect for parental autonomy What is the ethically correct thing to do when parents’ wishes appear to be contrary to a child’s best interests? This could occur either when parents decide against treatment which could save the child’s life, or when parents want to continue active treatment when doctors believe that this is simply prolonging the child’s suffering, and death is inevitable. Parents’ decisions can sometimes be overridden – there are legal mechanisms to permit and facilitate this, and there are ethical reasons why in particular situations, the decision should be overridden. Even if legal steps are not taken, more subtle sorts of pressure can be exerted on parents to change their minds. However, there is not full agreement in ethics about what these situations are in which is it ethically acceptable, or even required, to intervene and go against or change parental views.

There are two different ways of understanding these situations, based on two different views of the ethical basis for the parents’ role as decision-maker: the parent as proxy view, and the parental autonomy view. They differ in the degree of latitude that they would allow parents, before it becomes ethically necessary to intervene and go against parents’ wishes. On the parent as proxy view, the parents have less latitude – if their decision is contrary to the child’s best interests (ie fails to do the best for the child), then their decision should be overridden. On the parental autonomy view, parents have more latitude, and their wishes should only be overridden if the child will be done significant harm by their decision (in contrast to the child not being given the absolute best).

Deciding to initiate legal action, or to take informal steps to persuade parents, is a significant decision in itself. Doctors frequently prevail in these sorts of situations and so it is important to have thought though the ethics before taking such steps.

View 1: Parent as proxy - threshold for intervention is a decision that is not in the child’s best interests The more traditional way, in both law and ethics, is to view the parents as proxy decisionmakers for their child, whose obligation is to make decisions which are in their child’s best interests. Broadly, this would mean decisions which best promote that child’s health and well-being. The implication of this is that whenever parents’ decisions do not promote the child’s best interests, then in theory, it would be ethically appropriate to intervene and override the parents.

In practice, the decision to intervene is more complex. For a start, any intervention would only be justified if it had a good chance of succeeding in improving the child’s situation.

If, for example, getting a court order to treat a child against the parents’ wishes would most likely result in the parents absconding with the child, then this would not succeed in promoting the child’s best interest, since the child would end up with no treatment at all.

Also, an intervention would not be reasonable if it would be likely to do more harm than good in the long term. For example, if the parents would be alienated and not provide the child with emotional support during difficult treatment, or not provide appropriate follow-up care at home, going against their wishes may make things even worse in the long run.

View 2: Parental autonomy – threshold for intervention is a decision that will cause significant harm to the child The less traditional view, but one which is gaining wider and wider acceptance, is that parents’ job is to make a “good enough” decision for their child. As parents, they have an obligation to consider the needs of any other children they have, and the family as whole.

They also have a right to consider their owns, at least to some extent, and to act on their own values and understandings of how best to raise and care for their children.

The best interests of a child The term “interests” is a technical term in moral philosophy and ethics. It refers to those things which are needed to have a good life, and which a person therefore has a significant ethical claim to. It encompasses the ideas of beneficence and non-maleficence.

Interests include physical matters, such as not suffering or being in pain, having capacity to move etc – that is, things which a person would experience as good, and the loss of which they would experience as bad. Interests also include social and emotional factors, such as having interactions with other people, feeling safe etc. Future interests are particularly relevant to children – these are things that will matter significantly to their lives in the future, even though they do not matter to the child at the moment, such as capacity to have children or form intimate relations. Another way to think about interests is to in terms of well-being, in broad terms.

To act in a child’s “best interests” is to do whatever will best promote all the child’s interests. It is a maximizing concept – doing the best for the child overall. However, since a child has a range of different but important interests, it is not always possible to fulfil all interests all of the time. For example, a child has an interest in being pain-free and in living longer, but it may not be possible to have both. So acting in a child’s best interests can be a matter of working out the best compromise, or deciding between competing considerations. Acting in a child’s best interests should not necessarily be equated with prolonging the child’s life for as long as possible. In both law and ethics, it is recognised that it is not always better for a child live longer, nor is a child necessarily harmed by dying sooner than might have been possible with the full application of medical technology.

This makes judgements of best interests not a straightforward factual matter. Reasonable people working on the same evidence can disagree, either because they have different views about probabilities of possible outcome, or more likely because they have different values. That is, they place greater weight on one sort of interest (eg living longer) than on another sort (eg not being in pain).

Is parental consent always required for withdrawal or withholding of life-sustaining medical treatment?

Whilst it is in generally much preferable to have mutual agreement between clinical staff and parents about withdrawing or withholding life-sustaining treatment, it is not absolutely necessary for parents to agree to this course of action before it can go ahead.

There are some circumstances under which it could be ethically appropriate and legally permissible for doctors not provide some form of medical treatment, even if parents want the treatment and make an informed decision in favour of it. The basic reason for this is that neither doctors nor the hospital have a legal or ethical obligation to provide treatment which they believe is either (a) clearly contrary to the child’s best interests, or causes the child unjustified suffering – for example, treatment that would cause suffering and would only prolong life for a very short time before inevitable death.

(b) Not within the hospitals resources to provide The limits to parent autonomy discussed above (under “Parental rights and respect for parental autonomy”) apply as much to parents’ decision to pursue further active treatment as they do to parents’ decisions to refuse treatment for their child. The parents’ decision is overrideable.

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