4 - Ethics
Editors: Goldman, Ann; Hain, Richard; Liben, Stephen
Title: Oxford Textbook of Palliative Care for Children, 1st Edition
Copyright 2006 Oxford University Press, 2006 (Chapter 34: Danai Papadatou)
> Table of Contents > Section 1 - Foundations of care > 4 - Ethics
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4
Ethics
Vic Larcher
The boast of heraldry, the pomp of power And all that riches, all that wealth e'er gave Awaits alike the inevitable hour The paths of glory lead but to the grave [1]
Whatever their own personal religious beliefs or values, health care professionals need little reminding of the frailty and finite nature of human existence in the form that we understand it. Birth and death are inescapable aspects of living. Nevertheless, all professionals as part of their humanity hope that their lives will be as fulfilled, happy and rewarding as possible. They, like the patients they serve, will also hope that advances in medicine and technology will enable them to remain as healthy and as active as possible throughout their lives to enable them to live lives to the full. We hope, and have come to expect, that our children will grow up to lead the lives to which we aspire. Those who work with children are especially aware of the physical, physiological, psychological, spiritual, and emotional journey that children undertake between infancy and adulthood. They, like others, have a duty to ensure that this journey is accomplished as safely and as freely as possible. However, not all children can, or will, make this journey; their lives are limited by a variety of constraints over which they and their parents may have little control.
This chapter is concerned with the ethical principles, which underpin how our society responds to children whose lives are limited. Not all societies will respond, or have responded in the same way. The Spartans and Romans practiced infanticide for babies who were weak, infirm, had disability, or who were of the wrong gender. Whilst contemporary society largely condemns such practices, and holds respect for human life as a fundamental moral value, ethical difficulties remain. Does all life in all its diversity demand equal respect and carry equal value? What of those with life limiting illnesses (LLI)?
Background considerations
Globally life expectancy of children has improved (as a result of both technological advances and public health measures). Effective treatments have reduced mortality and morbidity of many diseases, including endemic infectious disease, for example, polio, hepatitis B, HIV, etc. Survival rates for many childhood cancers have increased. Patients with chronic illness, for example, cystic fibrosis have increased life expectancy. Organ or marrow transplantation offers hope of survival for children with chronic renal failure or advanced liver disease or such chronic blood disorders as Beta thalassaemia. Gene therapy and xenotransplantation may have future benefits that cannot be quantified at present [2]. There is great public expectation that technology can produce cures in most circumstances and that death in childhood is avoidable. Since childhood mortality in developed countries is low many professionals may have neither experience at managing death nor the morbidity of chronic incurable disease.
The context in which death occurs in children is variable. Death may be sudden in premature babies with catastrophic cerebral bleeds and in child victims of road traffic accidents. In others the dying process is more protracted, for example, multiple relapses in childhood leukaemia or slow decline of child with progressive neuro-muscular disease [3]. The
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responses of children, families, and professionals to impending death are likely to be as variable as the circumstances in which they occur. It is therefore hardly surprising that management of LLI poses ethical difficulties and practical challenges for all concerned.
There can be, and not infrequently are, actual or potential disputes between all parties as to what values should govern how decisions about management are to be made. We live and practice in a pluralistic multi-cultural, multi-faith society in which individual preferences, beliefs, and values (which govern what actions parties consider as morally appropriate), may vary enormously. There can be particular concerns as to whether adequate account is being taken of the intrinsic value of a child's' life, particularly as some LLIs limit not only the length of life, but also its emotional, psychological, and spiritual content.
Some parents may want active treatment to prolong life to be given to the point of death itself. Others may wish for a speedy and peaceful end to what they perceive as their child's intolerable pain and suffering. Such parents may feel that their own pain compromises their ability to give emotional and physical support to their dying child. Parental feelings of loss, anger, bewilderment, and injustice may further compromise their capacity to make rational choices on behalf of their child.
Professionals, mindful of the developmental potential and resilience of children may frequently give them more chances to recover from their illness than an adult might receive in similar circumstances [4]. This tendency, reinforced by a sense of empathy with the suffering of families may lead to increased efforts to restore the child to health, even in circumstances when this is unlikely. Moreover, professionals may feel that they must respect the beliefs, preferences, and values of families with which they may not concur as part of their perceived moral duty in contemporary society.
Approaches to ethical issues
Care of children with LLI raises dilemmas, that cannot be addressed or answered by appeal to scientific fact alone. Their resolution involves value judgements about what ought to be done rather than what is technically possible. Professionals facing these moral dilemmas may find that published guidance is either too prescriptive or too vague to be helpful [5].
The traditional analytical ethical approach has been the application of classical moral theories or principles (discussed in more detail below) to deduce whether a proposed course of action is morally acceptable. But there are occasions when conflicting moral principles may be present.
Clinicians tend to approach problems in a different fashion, working from the facts of a given case towards the general medical and nursing principles that might apply. Ethical examination of cases can also follow a similar pattern starting from the features of the particular case and seeking to recall similar cases, which might provide assistance in obtaining the resolution to the case in hand [6]. In dealing with a 15-year old who has refused further chemotherapy which his or her doctors recommended we might examine how similar cases were resolved and what ethical principles were relevant to them.
Other application of ethics may be concerned with what the practitioner (good doctor/nurse) would do in similar circumstances. Another would be to focus on the primacy of the patient's story and also take into account the narrative of others (e.g. professionals, parents) and how professionals might respond to it (narrative ethics) [6].
Consequentialist/utilitarian moral theory
(for general references on specific ethical theory see ref 7)
For consequentialists the rightness or wrongness of an action is determined by its actual or likely consequences in maximising benefits and minimising harms. Some kind of formal calculation of risks and benefits is necessary and as such it justifies reflective, evidence-based, audited practice. The principle of utility states that the rightness of any action is determined by its contribution to the happiness of everyone affected by it. An action is morally correct if it maximises welfare or individual preferences the greatest good for the greatest number'.
Effective palliative care satisfies the principle of utility in that it provides benefits for children and families alike. Clinicians may themselves derive immense personal benefit from practice of palliative care, but failure to involve others who could also benefit the child would not be justified. Moreover excessive altruism on part of the clinician, in so far as it may lead to burn out and an inability to provide care for others, may paradoxically lead to adverse consequences.
It is not clear as to the extent that a child's preferences might count, when compared to those of adults, so that difficulties can arise because of this conflict of interest. For example, should children be forced to have treatment that they do not want because adults want them to have it? Some applications of the principle of utility can cause psychological unease. What if the consequences of allowing the death of a child with severe developmental delay and physical disability can be calculated as maximising welfare in a particular society? This could be used as a moral justification for active euthanasia, albeit in a humane way, which many would find psychologically repugnant.
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Although the application of the principle of utility requires a potentially difficult calculation of the effects of uncertain consequences, this does not differ from any other exercise that involves balancing value judgements.
Inevitably there are concerns that the principle of utility takes insufficient account of individual preferences and may lead to subjugation of these to the preferences of the majority. This may not provide sufficient protection for the interests of the weak and vulnerable or of those who are felt to have limited capacity or those whose life is limited.
However, some form of utilitarian calculus is inherent in delivering health care to populations and to the allocation of scarce resources.
Deontology(for general references see ref 7)
A problem with consequential theories is that consequences cannot always be controlled even though they may be foreseen. Deontological theory is based on a doctrine of moral obligation or duty. To be moral is to do one's duty, or intend to do it, regardless of the consequences, because intention and motive are subject to an individual's control and determination. To do one's duty involves obeying moral rules, which can be derived by rational consideration or discovery in the same way as natural laws, for example, the law of gravity can be deduced from physical events. Moral rules must be universal (apply to everyone), unconditional (no exceptions) and imperative (obligatory or absolutely necessary). Moral principles, for example, beneficence, non-maleficence, respect for autonomy, and justice underpin moral rules and establish prima facie duties. It follows that in deontological theory some obligations are deemed right regardless of consequences, for example, truth-telling.
To be moral requires the ability of rational consideration to discern rules. It also requires the ability of self-determination (autonomy), that is, the ability to formulate and carry out plans and govern conduct by rules and values. Finally, a free choice must be available. Rational, autonomous beings have their own intrinsic value and are worthy of respect. They may not be used as means to further the ends of others, however laudable these may be. Thus, if we wish to eliminate a disease in society by mass immunisation programmes, but do not obtain informed consent from subjects, we use them as means to achieving our ends without respecting their intrinsic worth. The extent to which children are regarded as rational, autonomous agents who are worthy of respect has been contentious. Children vary enormously as do adults in their possession of these characteristics. Moreover autonomy may be affected by LLI, its treatments, or by moods. Finally, children go through a process of developing autonomy. As well as respecting autonomy, clinicians have a duty to enhance the development of autonomy. This involves giving enough information to enable a free choice to be made and encouraging some participation in decision-making.
As with consequential theory, there are some difficulties. For example, we may decide that both truth-telling and doing no harm to humans are absolute duties. If this is the case then there will certainly be circumstances in breaking bad news to children and families when truth-telling produces harm. Suppose the parents do not want their child to be told about their illness because of harms they fear may be caused. There remain difficulties in deciding which of the prima facie moral principles might take precedence. Inherent in deontology is the notion that only rational autonomous decision-making is of moral worth. Yet this feels psychologically unreal because other factors are involved. Indeed an absolute freedom of decision-making may be practically impossible because culture, law, or psychological make-up all condition decisions. The notion of autonomy emphasises the notion of individual choice when other societally derived rights and obligations may also be important. Finally, deciding between competing moral duties is difficult without taking some account of the consequences or likely consequences of actions.
Moral theory and children
One particular problem with classical moral theories is the extent to which they serve the best interests of the weak and vulnerable in general, and children in particular, without unjustifiable paternalism. Of course, such theories tend to reflect the values and standards of the societies that formulated them and it is only relatively recently that we have been particularly concerned with paying due regard to the views of children [8]. Moreover, many jurisdictions that frame legislations concerning children have traditionally been concerned with their age rather than their experience or capacity.
Children in general and those with LLI in particular may lack the capacity to express their views and such views as they have may not count sufficiently in the utilitarian calculus. If morality is a function of rationality and the will, children may be thought to lack the capacity for autonomy and as such their moral status may not be sufficiently respected. Some children with LLI may not live long enough to develop autonomy, for example, an infant with a brain stem tumour; others may not achieve physical autonomy because of disability, for example, muscular dystrophy; whilst others do not develop cognitive ability for self-determination, for example, severe microcephaly, spastic quadriplegia. Yet paradoxically some children with LLI develop more insight into life and its meaning than many adults, precisely because of their experience of
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living with LLI. If moral capacity develops by experience and practice there is no reason why many children cannot develop the capacity earlier than one might expect.
Rights, duties, and responsibilities
Children's rights
There has been increased global acceptance of the role of rights as providing status and protection for individuals (UN Declaration of Human Rights 1948 [9], UN Convention of Rights of the Child 1989 [10]). Dworkin has suggested that rights are necessary to protect individuals from the utilitarian calculus [12]. Similarly rights confer status on those who are thought to lack capacity or rationality.
Rights are justified moral claims made on behalf of individuals, which confer duties (action, or forbearance), on others. Positive rights, requiring action by others, include welfare, institutional, and legal rights and are established by social contract and may change as our society changes. They include rights to information and to the best available health care. Negative rights entail an obligation by others not to infringe them and may be characterised as natural or liberty rights. They include freedom of movement, speech, of practice of religious beliefs, and usually take precedence over positive rights. Special rights exist because of special relationships, for example, parent/child, professional/patient. However, a child's right not to be harmed may take precedence over the rights to family life when the latter cannot be maintained without abuse or neglect.
Holders of positive rights are justified in asking others to act to allow them to exercise their rights, but even these claims may be difficult to fulfil in practice. For example the family of a child with LLI could justifiably ask for effective and appropriate palliative care to enable them to care for their child at home. But if neither local resources nor expertise exists for them to do this then their just claims may be difficult to meet.
Rights, including those of beneficence, non-maleficence, respect for autonomy and justice, are often regarded as being derived from fundamental moral principles which then provide an established basis for health care ethics (Beauchamp and Childress). [7] In turn these principles may be divinely given, derived from natural law or based on social contract. Possession of rights enables individuals to seek redress if their rights are infringed and those who infringe the rights of others without due cause may be subject to ethical or legal censure.
In health care a child's right to the highest attainable standard of health confers upon others the obligation to deliver it. But it is unclear whether such a right is unconditional and, if it is not, what morally relevant considerations should apply. Some consideration of justice or fairness is involved in deciding such issues especially in circumstances when resources are finite. For example do children with LLI have the right to life sustaining treatment in all circumstances and, if they do not, what circumstances are morally relevant and acceptable? Are those in whom fertility is compromised by their own actions, such as promiscuity, less deserving of infertility treatment than those in whom fertility is compromised by LLI or its treatment?
The UN Convention of Rights of the Child sets out rights of children in a series of articles which member states need to ratify and implement [10]. Whilst the UN Convention applies to all aspects of a child's life, the World Medical Association (WMA) [11] has codified those rights pertaining to health. Both endorse the development of a rights-based, child-centred health care system.
A fundamental principle asserts that any decision or action concerning children as individuals or a group must have their best interests as a primary consideration. The Convention also affirms that a child who is capable of forming views on issues including treatment has a right to express them freely. Moreover their view should be given due weight in accordance with their age and maturity. Applied to medical practice this confers obligation to consult children about treatment decisions and their implications. These are particularly important in the many types of LLI where cognitive ability is unimpaired, for example, CF, cancer, renal failure, etc. Other articles confirm the right of freedom of expression (A13), the highest attainable standards of health care, and rehabilitation from illness (A24), privacy (A16), freedom from discrimination (A2), and the right to family life and to hold religious beliefs. Additionally there are obligations to provide families with the necessary support, advice, and services in caring for their children.
The WMA document emphasizes a child's right to child centred health care and encouragement to achieve full potential [12]. It also affirms a child's right to choose how much they should be involved in decision-making and how much information they wish to receive. Children should receive help and support in decision-making but have the right to delegate others to make decisions on their behalf. Importantly they should also have the right to confidentiality and to an explanation of reasons why their preferences cannot be met.
Arguments exist concerning the extent to which children should be allowed to exercise their rights for themselves and the extent to which others might do so on their behalf [13]. Whilst it would be wrong to underestimate a child's capacity it would also be wrong to assume that it was necessarily equal to that of an adult. Nonetheless, adults, be they parents,
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professionals, or advocates, make decisions from an adult perspective and, in their understandable desire to protect children, may act to their detriment. A teenage child with learning difficulties or muscular dystrophy who is prevented from mixing with the opposite sex may have his or her potential for personal choice restricted. Children with chronic conditions might be so over protected that their development into autonomous individuals is compromised. Some children may be unable to make a big choice, for example, as to whether they will have a particular treatment but can decide on aspects such as where they will have it.
Children's rights do not exist in isolation and the claim of a right is often more appropriately the beginning, rather than a trump card, of a moral argument. Rights may conflict, for example, the right to life as opposed to freedom from inhuman and degrading treatment. Rights possessed by various parties may constrain each other, for example, parental vs professional rights; children vs parental rights. A rights-based approach may be inherently adversarial. Enactment of rights-based legalisation may lead to re-examination of legal principles involving end of life decision-making (see below). It is not clear as to whose rights take precedence and it may be that children's interests are no better served by a rights-based approach than by application of other moral theories. Nevertheless, highlighting these issues continues to raise questions about the moral status of children and hence the way in which they are treated in our society. Such a debate is likely to have beneficial rather than adverse consequences, especially in the context of LLI.
Traditional moral theory has been concerned with how we should treat persons who are able to think and act autonomously. Although the past 20 years have seen no change in the criteria that we might use to define such individuals, there have been increasing recognition that some children do possess these qualities. Even when they do not, consideration of their rights leads to the obligation to provide them with information they can comprehend, to consult them, and to respect their wishes to the extent that is compatible with their best interests [14].
Moral duties and responsibility of health care clinicians
Clinicians have a special moral relationship with their patients, which imposes particular obligations upon them. Their primary duty is to serve their patients' good by placing their best interests as paramount. This involves two, sometimes, conflicting moral duties [15].
The first duty is to respect life and the health of patients by preserving life, restoring health and preventing disease; to perform these duties to an acceptable standard and to do so fairly and justly. Thus, there is a requirement for practice which is based on best evidence and to keep knowledge and skills up-to-date. Any proposed treatment should confer maximum benefit at the expense of minimal harm. Analysis of harms and benefits should include not only clinical factors but also emotional, psychological, and social factors in relation to the patient and their family.
The second duty is to respect patients' autonomy. This, as we have seen, involves respecting their right to as much self-determination as they are capable of and respecting known or ascertainable wishes, beliefs, preferences, and values. Since it is only an individual who can know what his or her best interests are, clinicians should not manipulate, coerce, or deceive patients into doing what they believe is in their patients' best interest.
Inevitably circumstances arise when a clinician feels that his obligation to benefit a patient is compromised by duty to respect their wishes. This is especially so in relation to children whose moral status may be unclear. In these circumstances clinicians will look to others who have power and responsibility to act on the child's behalf [14].
Parental responsibilities, rights, duties, and power
Although the impact of contemporary, sociological, and legal thinking has been to empower children by encouraging their involvement in decision-making, there remain circumstances in which children cannot or will not express their views. There may be sociological or cultural constraints that limit some children from expressing their own views. For example, cultures where children are expected to be seen, but not heard still exist. Where children do lack the capacity to express their views because of age, developmental, psychological, or other factors, others have ethical and legal authority to make decisions on their behalf.
In most cultures, religions, and legal systems parents have this responsibility. The UK Children Act defines parental responsibility as all the rights, duties, power, responsibilities and authority which by law a parent of a child has in relation to the child and his property' [16]. Although much ethical theory does not consider the matter specifically it is clear that parents, by reason of their special relationships with their children, are expected to take a moral responsibility for their upbringing. Parents would be expected to know their child best and hence determine his or her best interests until he or she is able to do so for themselves. The UN Convention acknowledges parental obligation to promote and enhance autonomy and their right to be supported in this task [10].
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Application of both moral theory and law supports the autonomy of parents to rear their children in accordance with their own values provided they act in the child's best interests.
A family's concept of their child's best interests is likely to be determined by their own ethical framework or the kinds of duties, rights, and principles outlined above. Social, cultural, and spiritual influences also shape an individual's moral framework. A family's religious beliefs, political and cultural attitudes, peer pressure, religious groups, neighbours, life experiences, and outside influences, for example, media reports, all shape its collective value judgement systems. These may not coincide with those of professionals from different social-economic backgrounds and matters are compounded by power imbalance inherent in the professional/patient (child)/parent relationship. A further conflicting variable may be a child's burgeoning need to make his or her own decisions, which may not coincide with professional or parental choices.
If palliative care focuses on providing the best quality of life for patients and relatives [16] then some way of resolving potential conflicts over what constitutes best interests and who decides them must be found.
Moral arguments in favour of palliative care
Against the background of moral theory, professional, and parental responsibility, it is easy to see that provision of palliative care or symptom relief for children with LLI is as morally justified, as it is clinically important. If health is the absence of physical and mental disability that results from disease then the use of palliative care to alleviate the effect of illness and disabilities is entirely consistent with a duty to restore health or alleviate suffering. It enables the child to sustain his or her capabilities for as long as possible. Good palliative care maximises a child's potential within the constraints of his or her illness and as such achieves the duty to respect and promote such autonomy as the child is capable. Since palliative care supports parents and carers it satisfies the utilitarian calculus. As palliation aims at symptom relief irrespective and independently of any intention to provide curative or life-sustaining treatment (LST) then its use from early on in LLI is mandatory. Some elements of palliative care are a moral requirement of any treatment, but they are especially so in children with LLI and those in whom overall prognosis remains in doubt.
There are also some circumstances where it is neither morally nor legally acceptable or necessary to continue to provide LST because it is no longer in the patients'best interest to do so [18, 19]. There may be little or no likelihood of clinical benefit or the child may have a life which is so severely limited that further prolongation of existence is more than can be borne. However, a decision to change the goals of treatment from cure to palliation can only be ethically justified if there is adequate and appropriate palliative care, which must include support for the family [20].
Formally changing the goals of care from cure to palliation poses intellectual and emotional challenges. Inherent to the process is a frank discussion of the child's condition and prognosis and a decision to forego some aspects of LST. Both the process of initiating such discussions and their timing require skill and sensitivity. It is important to consider at what stage in the context of a child's LLI that the future provision of LST is no longer ethically or legally justified. Since an essential prerequisite is the ability to provide effective palliative care it is highly likely and appropriate that those health care workers responsible for providing that care should be involved in the discussions.
Discussions not to prolong life can raise self doubt in clinicians and introducing the topic may lead to conflict between all parties involved especially when there are serious moral questions about sustaining life [21]. It is recommended that those who participate in discussions that precede decision-making understand the ethical and legal principles involved. Such understanding enables a proposal to limit, withhold, or withdraw LST to be discussed in as open, constructive and sensitive fashion as possible. In addition clinicians require qualities of empathy, sympathy, and team work in managing children with LLI and their families. Particularly important are good communication skills, which are highly valued by families.
Moral argument against provision of LST
Decisions not to provide LST are made on a regular basis in clinical medicine [22, 23, 24] and at first sight this seems to run contrary to the clinician's duty of care. In most circumstances protecting and saving lives is in the patients' best interests because they can benefit from medical treatment [18, 19]. Decisions to let nature takes its course' can only be justified if it is no longer in the patients'best interests to intervene against nature.
It is important to consider the circumstances and contexts in which the objective interests of patients as human beings are not served by prolonging their lives, because in such circumstances offering LST imposes burdens which are not commensurate with benefits. Put another way, we need to consider the circumstances in which it is more in the interests of the child with LLI to allow him or her to die rather than
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to institute or continue treatments to prolong life. Such circumstances are particularly likely to arise when a child is permanently unable or becomes no longer able to engage minimally with some sense of sustained self-awareness and well-being in any of the activities that uniquely characterise human life [18, 19].
In practice there are a range of circumstances in which a child's best interests might be compromised by continued existence. One situation might be when a child is so close to death or so physically and emotionally weak that he or she cannot initiate any coherent action for his or herself. Another would be when there is such severe brain damage that a child has minimal actual or foreseeable capacity to reason, choose, or plan ahead and develop or have any meaningful conversation or interaction. Such interactions are fundamental to an individual's understanding of themselves and the world in which they live and their absence may seem to compromise all that is valued in life. In contrasting circumstances patients may have all the attributes of autonomous beings but decide, because of either physical, emotional, or psychological limitations resulting from their illness, that life does not have enough sustained purpose (despite appropriate clinical intervention) for them to wish to continue it. They may decide for themselves that LST is a greater burden than benefit.
In all these circumstances it may be argued that life has limited value to the extent to which certain qualities maybe lacking or diminished. The relevant qualities include the ability for self-development or following ones own preference expressed through choices, a sense of happiness or well-being and a sense of interaction with others in society. Scales to quantify values of life exist and have been used to quantify the value of health care interventions. However, it has been argued that quality of life is multifactorial and the factors involved are incommensurable, so that attempts to produce some form of utilitarian calculus to influence decision-making are likely to fail [25, 26].
Nonetheless, clinicians may conclude that it is morally and professionally unacceptable to strive to prolong the lives of patients by medical means. If ongoing treatment is no longer in a patient's best interests then deciding to override this by appeal to the sanctity of life principle is just as much a breach of professional duty as failure to intervene when it is in a patient's interests to do so [27].
It may be difficult to apply these arguments to children, especially when age, communication problems, and developmental factors limit the capacity for the kinds of interaction described. There may be more uncertainty about the likely prognosis for a small child than there is for an adult with a comparable condition. Uncertainties about the potential for an infant's developing cognitive capacity can only be clarified as time passes. Part of the moral justification not to provide LST is that the pain and suffering imposed by LLI can be effectively relieved by palliative care. However palliative care should not be identified with acute non-treatment decisions but rather with the moral obligation to relieve pain and suffering of those with LLI both before and after such decisions. Ability to provide palliative care may help relatives and other carers to come to a decision which is in the best interests of the child rather than prolonging of life at all costs. The legal justification for such decision-making is discussed below.
Legal considerations
The role of courts in end-of-life decision-making
Whilst ethics debates what should be done the law decrees what shall or shall not be done. Care for children with LLI must therefore be delivered within the framework established by law.
In general the law provides
A framework in which to resolve difficult ethical issues
Safeguards in response to controversial issues absolute prohibition, for example, active euthanasia procedural hurdles regulation, for example, withdrawal of treatment in PVS
Mechanisms for resolving intransigent disputes
Protection for the weak and vulnerable.
Law provides that the courts are the agents of the law and have a number of powers and functions that include:
Interpretation and application of existing statute, criminal, and case law
Creation of new precedents depending on the level of court
Provision of an impartial, fair, and transparent system to resolve competing claims.
Ultimate definition of the best interests of incompetent individuals and decision-making on their behalf.
Depending on the nature of the jurisdiction different emphasis may be placed on the rights of the family as opposed to the rights of individual children.
General legal considerations: (for general references on legal principles see ref 28)
Although certain aspects of criminal law, for example, the prohibition of murder are clear there has been a lack of clarity with regard to the extent to which clinicians must provide LST
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for children with LLI, especially when they do not believe that the treatment is ethically justified.
Clinicians who take no action to save the life of patients whose death is foreseeable, may face prosecution because they have knowingly and deliberately acted in direct contravention to their duty of care. However, clinicians who give treatments that a patient has rationally and competently refused, for example, blood transfusion to an adult Jehovah's witness have technically committed an assault and have infringed their patient's physical autonomy. Even if they do not find themselves criminally liable the patient may sue for damages produced by non-consensual treatments provided that they are able to satisfy the legal criteria for negligence. In practice clinicians are more likely to worry that they may face criminal charges if they fail to provide LST.
Although the general legal principles given below are likely to have wide application the details will vary in jurisdiction outside the United Kingdom, and readers will need to obtain advice germane to their own country.
Before 1989 the only English legal precedent on which to base decision-making related to a child with Down's syndrome and duodenal atresia whose parents had not wanted the child to undergo surgery. The judgement in this case suggested that if an infant had such a demonstrably awful life that no reasonable person would want to live it, then it might be appropriate to let them die without medical intervention [29]. The criteria for what constitutes such a life were not enunciated but the presumption was that a level of disability greater than that associated with Downs' syndrome was envisaged. In the United States a series of contemporary judgements seemed to establish that on balance, infants should continue to receive treatment directed to prolong their lives even when they had significant disability.
In the 1990s, a further series of cases, mainly involving infants with disabilities, were brought before English Courts. Although in strict terms the judgements refer only to the individual cases themselves, their outcomes have been used to define circumstances in which the non-provision of LST might be legally justified. The overriding principle enunciated in all judgements was that such treatment should be in the best interests of the patient. Courts have tended to take a broader view of best interests than that defined by an analysis of purely clinical outcomes.
Courts have determined that the provision of LST is not in the best interests of patients in the following circumstances:
An infant who was imminently and irreversibly close to death as a result of hydrocephalus and cerebral malformation [30].
An infant with severe spastic quadriplegia, deafness, blindness, and a limited capacity to feel pain. Although not close to death, the baby had such severe disabilities that he would never be able to engage in any form of self-directed activity [31].
A baby with severe brain damage as a consequence of micro-cephaly and cerebral palsy. Although his mother wanted active treatment the clinician's decision not to provide it was upheld. The principle established here was that clinicians cannot be forced to administer LSTs that they believe are not in the best interests of the child, even when the parents insist [32].
A young adult in PVS was dependent on tube feeding for survival. The Court held that in these circumstances tube feeding was medical treatment and could be withdrawn because it conferred no clinical benefit and was not in his best interests. The Court also held that there was no legal distinction between withdrawing and withholding LST. [33] A concern is that withholding treatment from patients may mean that they do not receive treatment that might produce some, albeit, limited benefit. No cases involving withdrawal of tube feeding in infants or children have subsequently come to Court in the United Kingdom. In consequence, the legality of withdrawal of fluids from children who are not close to death remains unclear and many professionals have ethical concerns about it.
In both adults and children it has been held that non-provision of cardiopulmonary resuscitation was acceptable in circumstances of very severe brain damage [34].
Adults who are competent to do so may request that LST be withdrawn, especially if they face continuation of life they regard as being worse than death. This was the case with Miss B, a 43-year-old woman who had suffered bleeding into an upper spinal cord haemagioma and was quadriplegic and ventilator dependent [35]. In contrast, the request by a women with advanced motor neurone disease to have her life ended by her partner in what was effectively assisted suicide or active euthanasia has been rejected by English Courts [36].
Whilst courts appear to be unwilling to condone practices which require active intervention by others which would normally be regarded as unlawful they may condone what has been termed passive euthanasia [36, 37]. Such judgements serve to flesh out what may be considered a demonstrably awful life' and are essentially moral in nature.
It is not clear in the United Kingdom as to what effect that enactment of Human Rights Legislation might have on the outcomes of the judgements described above. However it does seem that Courts are prepared to accept that there are circumstances in which the continued provision of LST has
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limited clinical benefit and no longer serves the broader concept of best interests. It has been argued that they would be unlikely to have reached this position without the availability of high quality, effective palliative care.
Practical aspects of decisions to withhold LST
Consideration of ethical and legal principles discussed above leads to a number of specific issues in relation to children.
In what kind of circumstances might it be in the best interests of a child to change goals of care from cure to palliation?
What should be the underlying process for such a change, so as best to represent the interests of all concerned?
If changing goals of treatment requires consent who is able to do so?
To what extent should children be involved in decision-making and what weight should their views carry?
Circumstances in which goals of care may be changed
Decisions to change goals of care may be dictated by clinical circumstances, for example, when death is imminent, whatever action is taken. In others the child's clinical condition per se is not determinative, for example, a child with moderate/severe learning difficulties who develops renal failure requiring dialysis or transplantation.
In 1997 and 2004 the Royal College of Paediatrics and Child Health (RCPCH) published an ethical and legal framework within which decisions to withhold or withdraw LST might be made [18]. Other bodies have since published guidance but the RCPCH identified five situations in which withholding or withdrawing LST might be discussed. These were:
-
Brain stem death.
-
Persistent vegetative state.
The no chance situation when LST would only marginally delayed death without alleviating suffering.
The no purpose situation when prolonging survival is possible but only at the cost of physical or mental impairment, which it would be unreasonable to expect the child to bear. It was envisaged that such a child would never be capable of sufficient self-directed activity to make decisions for themselves.
The intolerable situation where prolonging survival was again possible but, in the face of progressive and irreversible illness, the child and/or family believe that further treatment is more than the child and/or family can endure with any acceptable degree of human fulfilment. This situation clearly includes children with and without mental impairment.
The situation envisaged in 1 and 2 above arouse little controversy although some may not accept brain stem death on religious grounds [39, 40] and diagnosis of PVS in young children may pose practical problems. Equally few would contest withdrawal of LST where clinical benefit is impossible, for example, in an 18 month child with meningococcal septicaemia, tissue gangrene, and multiple organ failure.
The situations envisaged under the no purpose' and intolerable headings are more controversial essentially because they raise issues and conflicts which surround the focus of the duty of care (to child or parent), about what might constitute best interests and who might decide them.
The no purpose situation envisages that the outcome for the child might be so severe in terms of physical or developmental damage that it would be unreasonable for them to be expected to bear it. Such a child might already have, or regress to, minimal self-awareness and capacity for social inter-reaction. Such an example might be provided by the ongoing care of an extremely premature baby following severe intraventricular haemorrhage or a child with neurodegenerative disease, for example, Tay Sachs, Batten's disease, who develops respiratory failure.
In the intolerable situation the infants and children may have a wide range of cognitive abilities. The burden of repeated clinical intervention may here be considered to be too great in terms of clinical benefit, for example, a child with some intellectual impairment, renal dysplasia, and chronic renal failure who ultimately requires dialysis. Similar cases might involve a child with sufficient experience or maturity to refuse further treatment, for example, heart/lung transplantation in an 11-year old with cystic fibrosis in which the family supports the child's decision not to undergo transplant surgery.
Some children in this situation may be able to express their feelings about their disabilities or illness and its impact on their lives, such as, inability to attain certain goals, which they have set or peer groups achieve. This level of awareness may be sufficient to generate feelings of anger and frustration that may be increasingly difficult to alleviate. In these circumstances continued provision of LST is increasingly questionable for children, parents, and carers. Recognising when this stage is reached and knowing how to broach the subject requires particular clinical and humanitarian skills. At all events consent is required.
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Consent in children with LLI and palliative care
All health care intervention requires the valid consent of patients or those empowered to make decisions on their behalf [28]. All persons have an ethical and legal right to decide what shall be done to them. Consent grants the clinician the permission to do something which would otherwise be unethical or unlawful. Consent is therefore more than mere acquiescence or the symbolic signing of a form. Rather it is a dynamic process embodying information sharing and understanding, expression of preferences and choices over what treatment an individual shall receive and satisfies the professional obligation to confer benefit and to respect autonomy.
Although consent involves exercising a right of choice over treatment options, it does not create a right to demand treatments, even when these may prolong life. Some parents, and indeed some children with LLI, may be willing to accept treatments which carry high risks but little likelihood of prolonging life, even for a short time. However, clinicians cannot be expected ethically to provide treatment which would cause overall harm, neither does the law compel them to do so. It follows that agreement to undertake investigations or treatment is a dynamic decision made in partnership between children, families, and clinicians. Such partnerships are justified because they establish a relationship of trust and are associated with better health care outcomes [41]. A valid consent should be sufficiently informed, given by a competent person, and obtained without coercion or threat.
Information
To make choices children and families need information about their diagnosis, prognosis, and treatment options, which in this situation may be sad or unpleasant. Clinicians have traditionally been unwilling to present such information to children on the grounds that it may cause harm, but if the clinician/child/parent relationship is to become one of trust then there has to be increasing openness about what treatment can and cannot achieve [42]. Research shows that children can benefit from knowing potentially unpleasant facts about their parents' health care and from being given truthful explanations [43]. There is a tendency for clinicians to underestimate a desire for information but overestimate a desire for participation in all decision-making [44]. Competent children and adults may elect that others make decisions on their behalf although their views may change with deepening experience of LLI.
Since parents are the key decision-makers for children who lack competence it is important that they have sufficient information to make decisions which are in their child's best interests. As well as information they need sufficient support and help to understand the meaning of what is discussed and also the opportunity to acknowledge their own feelings. For older children, and those who have developed understanding by their experience of LLI, imparting sufficient information which is unlikely to cause harm is important. Parents may have difficulty with this and may want unpalatable or unpleasant facts to be kept from their child. However, they may not understand that their child with LLI knows that they are dying but does not want to upset their parents by letting them know this.
Imparting information requires effective communication skills, which are highly regarded by patients and relatives in the adult end of life decision-making. However they should not be used to coerce or manipulate children or parents to do what clinicians regard as being in the patient's best interests.
Quantification of information given requires thought. Previous professional standards the information that a reasonable professional might disclose may spare both clinicians and patients from the effects of distressing information, but may not provide enough information for reasonable choice, and hence fail to respect autonomy. A more acceptable standard is the amount of information a reasonable parent or child might wish to have in similar circumstances. It is difficult to know to what extent children with LLI may conform to this standard. Some experienced, competent patients may want more information, whilst in others what can be imparted will be limited by cognitive ability or circumstance. There may be cases, albeit rare, in which children are genuinely harmed by receiving information, which a reasonable child might want.
Information given to the extent that a particular parent or child might want provides maximum respect for autonomy at the expense of being time consuming. But neither parents nor children may disclose preferences, and say precisely what they do want. Spending time trying to achieve this standard may be at the expense of time spent in providing necessary care for others in whom there might be greater chances of clinical benefit.
In practice it seems that truth-telling and information sharing is important but the quantum depends on the harms/benefits calculus [45].
Although the above standards refer to rational adults who are assumed competent to consent, children also have the right to receive information at a pace and in a form which they can comprehend.
Without prior information, a child's capacity for understanding can only be assessed in abstract and they will have little chance to develop specific capacity for the task in question. If it is a professional duty to enhance a child's
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competence then they should receive the information that will enable them to achieve this. Children with LLI will vary enormously in respect of their information requirements. The principle of justice requires that we treat those with differing needs fairly but in accordance with morally relevant differences which exclude discrimination on purely social, religious, or ethnic grounds or indeed of disability itself.
Adults may waive their right to make an adequately informed choice on their own behalf, but may still accept (or reject) a treatment which clinicians believe to be in their best interests. It is more arguable as to whether parents may waive this right in respect of children who are unable to make informed choices for themselves. Accepting a treatment for another without due deliberation may fail to take that person's best interests seriously and may lead to clinicians making unquestioning, paternalistic judgements. Where there is doubt that parents, for whatever reason, are acting in the best interests of their child or not taking them seriously, then it may be necessary to obtain legal advice.
Competence
Competence is the ability to undertake the task in question, in this case to make a decision about treatment options. It is contextually and culturally dependent. Patients may be temporarily incompetent by reason of confusion, diminution of consciousness or pain and similar constraints apply to children. Equally, families who face difficult decisions may feel that they lack the emotional competence to make them.
In legal terms competence involves the following abilities [46]:
to understand relevant information;
to believe that it applies to oneself;
to retain information for long enough to deliberate upon it;
to use information to make a decision;
to communicate the decision.
These abilities are not necessarily a function of age, also children may be competent in one area, for example, choosing what to eat, but lack competence to make major decisions about treatment options. Different legal ages for competencies, for example, driving, drinking, reflect a society's desire both to protect the vulnerable as well as itself [14]. In English law a child's capacity with respect to consent to treatment is a function of his or her ability to understand fully the nature and purpose of the procedure, its complications and the impact of their choice upon their family [47].
When the decisions faced are important and the impact on the child and family is great it has been argued that the barriers to granting a child his or her wish should be greater [48]. This does not mean that a child's views should not be sought. If his or her views are not accepted, he or she should be told the reasons why.
Even children who are competent may elect that others make choices for them. The general ethical and legal duty to enhance and develop competence of patients applies as much to children with LLI as any others, to an extent commensurate with their abilities. Clearly some children with LLI lack the capacity to develop self-directed activity irrespective of age. Others will do so, albeit at a slower rate than their peers. Others may have sufficient capacity for self-determination, but may be perceived to lack capacity because of physical disabilities, for example, severe movement disorder as a result of cerebral palsy or severe disfigurement may lead to a false assumption of incompetence. Children with Duchenne muscular dystrophy may be thought to have a poorer quality of life than they themselves acknowledge.
Voluntariness
Adult patients should not be coerced or manipulated by clinicians into accepting treatment that they have not chosen on the basis of information received. In order that choices for children are as freely given as possible, consent givers should receive a rational balanced presentation of benefits, harms, and risks of treatments. When confronted by distressing information, failure to provide adequate time for reflection and questioning is also coercive. Children with LLI, even if they have developed competence, may be vulnerable because of the circumstances of their illness. Their parents may seek to prevent them from receiving distressing information in order to protect them. Such manoeuvres, whilst understandable, may limit free choice and create mistrust. The power imbalance between professionals, parents, and children may also threaten voluntary choice. Attempts should be made to minimise all these factors.
Collusion
Contemporary health care depends on partnership which is based on mutual trust and understanding. Patients make informed choices about health care with the help and support of their clinicians. The situation is more complex in paediatrics where children, especially those with LLI, may lack the capacity to make informed choices and where parents have ethical and legal responsibility for decision making. The WHO definition of palliative care includes the care of relatives, emphasising their significance [17].
In practice the ideal of partnership may be difficult to achieve because of power imbalances between professionals, children, and parents/carers. Understandably parents and
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carers may wish to control the flow of information to their child, whether the latter is competent or not. However, this approach is potentially both paternalistic and parentalist and may not be in the best interests of the child [54]. It may lead to collusion between professionals and parents so that children are excluded from receiving information which others deem harmful or distressing. In turn this compromises a child's capacity for choice and adversely affects his or her potential to develop capacity. Collusion is also likely to inhibit the duty of confidentiality, which is owed to a child, and may exist independently of their capacity. One way of overcoming this is for professionals to share information with both children and parents in a sensitive, appropriate, and timely fashion, enabling both parents and children to ask questions which they may have [54].
Secrets between parents and professionals, for example, the withholding of the fact that a child's prognosis is poor, may be difficult to keep from children, especially when they have gained experience of their illness and may be able to recognise uncomfortable body language which adults may subconsciously exhibit in these circumstances. Collusion between parents and professionals can also be used to force the children to have treatment that they do not want but which adults in similar circumstances can refuse [14, 54].
Recognition of collusion and how to tackle it requires tact and skill. For competent children, adults have no specific rights to control the flow of information, unless it is likely that harm to others will result. Despite this, parents do need information in order for them to fulfil their role as carers in as humane and efficient manner as possible.
Children may also share information with clinicians which they do not want their parents or others to know. By and large such confidences should be respected because they are essential to the relationship of mutual trust and respect between patients and clinicians. However, in case where failure to share such information potentially compromises the ability of parents and others to provide care for the child, then it should be shared on a need to know basis.
Conflicting views between parents, children, and clinicians
Demands for continuing LST by parents
Sometimes parents may demand that clinicians continue to provide LST in circumstances where intervention will neither significantly prolong life nor confer clinical benefit. Such claims may stem from genuinely held parental (social, religious, or cultural) values and beliefs, which may not be shared by the clinicians. Although parents may have a right to make decisions on behalf of their child, this does not confer the right that demands for treatment must be met.
The best interests of the child remain the clinician's primary ethical and legal duty. Some moral duties are owed to parents but related to relief of their pain and distress and the provision of support and guidance [20]. They should be helped with sensitivity and compassion to understand the nature and prognosis of their child's illness and given clear reasons as to why continuing LST is not in the child's best interests. This approach is time consuming, may be difficult, and may arouse conflicts. Ethical problems also arise when views of parents and children have not been fully ascertained.
Resolution of conflict requires negotiation, communication, consensus building, and avoidance of potential areas of misunderstanding. Deferring to requests for benign or uncomplicated treatments may be helpful, for example, antibiotics but not ventilation in a child with severe cerebral palsy and respiratory failure due to a chest infection. It must be emphasised that withdrawal of LST does not mean withdrawal of care. Taking a second opinion, involving other family members, religious advisers, and advocacy services may all be helpful. Family conferences with or without formal ethical support, for example, from a clinical ethics committee may also be valuable [49].
Despite these approaches, which can be used in any type of ethical dispute, parents may continue to demand LST. In these circumstances they should be advised that it is their right to seek judicial review, should be told what this entails, how they may approach it, and if necessary be helped to do so. Despite the impact that such a decision to seek legal advice may have on clinicians the parents should continue to receive support and not be engaged in adversarial conflict or debate.
Refusal of LST by parents or children
Some children with LLI may have a personal experience of life which, in so far as it is ascertainable, is terrible and may be able to express feelings of pain, anger, frustration, and sadness at the effect of LLI on their aspirations and hopes. Although some of these feelings may be alleviated by palliative care there may come a time when continuing LST becomes questionable for children, parents, and carers. Further treatment may extend life but confers greater burdens. In response to these situations some parents may feel that the life of their child is now so limited that further treatment is not in their best interests. Recognition of when this stage has arrived and how to discuss it is part of the art of medicine .
Clearly some children may be able to decide for themselves that they do not want further LST and by and large their views should be respected, especially if the clinicians concur. For
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those who lack competency it seems likely that, as long as clinicians and parents agree, LST may be lawfully withheld. However, if parents continue to disagree with the clinicians and an agreement cannot be found by the use of the techniques outlined above, referral to the Courts may be necessary.
A rather uncomfortable situation for clinicians may arise. It is possible to envisage a scenario in which two children with very similar clinical conditions may or may not continue to receive LST depending on their contrasting parental views. The logical conclusion is that respect for parental autonomy or rights overcomes the best interests of the child. The moral justification for this, in the absence of a clearly expressed view from the child, is that it would be wrong to force the beliefs and values of the clinical team on parents who disagree with them, though there clearly are other circumstances, for example, child abuse, where this occurs. However, it is the parents, not professionals, who will have to live with the consequences of whatever decisions they have made. In these circumstances a utilitarian calculus may trump the professional duty of care.
Whatever alternative is chosen the duty to provide relief of suffering for the child and family remains and will fall to the palliative care team.
The extent to which children should be involved in decision-making
Children are actively developing their personalities through inter-reactions and relationships with peers, parents, and other adults. As they mature they acquire the skills and confidence to carry out tasks and are deemed competent to do so. Their emotional well-being is in part dependent upon their self-satisfaction with these dynamic evolving achievements [50]. Interference with this process of developing capacity by denying children the right to be involved in decision-making may result in the loss of self-esteem and the lack of confidence. Balanced against this is the duty to protect children from making harmful choices when they may not fully understand the implications and consequences of their choices.
Good parenting [and clinical care] involves giving minors as much rope as they can handle without the unacceptable risk that they will hang themselves' (Lord Donaldson in Re W [51]). Finding a proper balance between the harms produced by over-protection and those produced by too little can be complex and difficult in the clinical care of children [13].
There is both an ethical and legal obligation to consult children about their feelings thoughts, and preferences to an extent commensurate with their maturity and understanding [10, 16]. This is not to say that a child's views should or will prevail. The extent to which it might do so is determined by the importance of the decision in hand and its impact on the family in a way that is not required for adults provided that an adult can show that they are competent as previously defined and they are free to make choices about their treatment that clinicians may regard as irrational and dangerous.
It is logical to argue that if a child is deemed competent to consent to treatment then he or she should be able to refuse it even LST in the context of LLI. There are strong moral arguments, founded on a duty to respect a young person's autonomy and upon the adverse consequences of forcing unwanted treatment on them, as to why this might be so. Because children with LLI may be vulnerable and physically weakened by their condition, it is all the more important that unwanted treatment is not forced upon those who are competent to refuse it. As we have seen the child's experience of LLI confers a degree of competence that other children of similar ages simply do not have. Indeed it is widely accepted that a competent child's decision to refuse treatment which is not essential to prolong life or avoid serious ill-health should be respected [14].
However, in practice, clinicians have difficulties in honouring a child's choice to forego LST, especially when they do not believe that it is in their best interests to do so. It is in these difficult circumstances, as in other disputes, which cannot be resolved by application of procedures previously described, that judgement of Courts may be requested.
Courts and the role of law
Courts are the ultimate arbiters in matters concerning the definition of best interests in circumstances of disagreement. In determining best interests Courts have taken a broader perspective of best interests than that provided by analysis of purely clinical benefits and harms. The welfare checklist includes ascertaining the wishes of children and families, their cultural, social, and religious backgrounds along with other factors.
In general, Courts have accorded great weight to clinicians' views of best interests and have been reluctant to force clinicians to give treatments, which they believe are futile and burdensome. Thus, they have over-ruled parental demands (made on the basis of strong religious beliefs) to provide LST for a child with spinal muscular atrophy. They have also been reluctant to allow parents to refuse LST for their children in circumstances when clinicians felt it was in the child's best interests to treat. However this is not invariable, in that parental right to refuse liver transplantation for their child with chronic liver disease was upheld on the basis that their views of their child's best interests overrode the clinical view [14].
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Courts have been equally reluctant to sanction a child's refusal of LST, even in circumstances where their consent would be lawful. Thus, although children over 16 years, or those who are competent to do so, may consent under English Law, in practice they may not be able to refuse LST until they are over 18 years. Thus a boy with leukaemia, who was a Jehovah witness, was deemed unable to refuse blood transfusion, which was in his clinical best interests [52]. Courts have also sanctioned heart transplantation in a teenager with acute cardiomyopathy, despite her reasoned refusal, on the grounds that she did not understand the consequences for her family [53].
Thus English Courts have defined circumstances in which both parental and children's wishes may be overcome, although it is not clear what force these judgements might have in other jurisdictions.
Resuscitation
In the United Kingdom all establishments that face decisions about attempting resuscitation are required to have policies relating to these decisions. These should respect patients' rights, be understood by all relevant staff, and be accessible to those who need them [55]. Resuscitation is potentially life saving and there is a general presumption that it will be attempted unless specific agreement to the contrary exists in the form of a Do Not Attempt Resuscitation (DNAR) Order. The outcome of resuscitation attempts will depend upon the nature and severity of underlying disease process.
Attempts at resuscitation may not be in the child's best interests because
they are unlikely to be successful;
because there will be no material benefit in restarting the heart because of likely duration of survival or high risk of severe side effects;
any expected benefits are likely to be outweighed by burdens.
The issuing of DNAR orders may result in limitation, withdrawal or withholding of LST. Families may find it difficult to agree to a DNAR because they may have unrealistic expectations of the likely success of resuscitation, poor knowledge of complication rates, and poor perception of the processes involved. They may have difficulty in accepting withdrawal of treatment for cultural, psychological, and religious reasons. However, they may be able to accept some limitation of treatment [23].
There is considerable variation of practice as to how the decisions to issue DNAR orders are made with families. Such variability doubtless results from differing views as to whether such discussions are appropriate in the context of terminal illness [56]. The view that discussions should not take place is based on the paternalistic notion that discussions cause more pain and distress than likely benefit, and may reinforce false expectations and hopes in the likely outcome of resuscitation. The contrary view is that families are more likely to suffer harm and have less trust in their doctors if they do not have such discussions and, as unpleasant as they may be, they are essential for informed choice. Some support for the latter view comes from studies of bereaved parents in the United Kingdom, where the parents felt that they had made the decision to withdraw or withhold LST and they needed to feel that their decision in retrospect was the right one [57]. There seems no reason why children with LLI should not be sensitively involved in discussions provided they have sufficient maturity, understanding, and insight and provided they receive appropriate help and support to the extent they require it.
Euthanasia
The term euthanasia is most commonly reserved for the compassion-motivated deliberate rapid termination of the life of someone afflicted with an incurable and progressive disease [58]. It may be regarded as voluntary if the dying person requests it and involuntary if they do not or can not. Respecting autonomy of patients allows them to decide the timing and manner of their own death [59].
Treatment given with the intention to alleviate pain and suffering in children with LLI is clearly consistent with the moral purpose of medicine, even when it can be reasonably foreseen that such treatment will not prolong life and may even be associated with some shortening of life. If a literal meaning of euthanasia is a peaceful gentle death then the aim of palliative care is to achieve this.
In contrast, treatment given or omitted with the intention to shorten life is a criminal offence, even if a patient or parent of a child with LLI requests it. Clinicians have a duty not to kill their patients. Thus it could be argued that any omission, for example, by not providing LST, is a breach of that duty. The law in the United Kingdom and many other jurisdictions does not permit euthanasia or assisted suicide.
Arguments continue over the validity of accepting the intention of a clinician as a criterion for the moral and legal validity for an action or omission which may be followed by the death of a patient [60]. Those who accept intention as a valid argument consider that there are actual, experiential, conceptual, moral, and legal distinctions between foreseeing that an action will kill a patient and intending that it does so.
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This is consistent with the doctrine of double effect where the beneficent intention of an action outweighs its unintended but foreseeable adverse consequences. In the circumstances of LLI it is the consequences of the illness that is responsible for the death of the patient and not the action of the clinician. The counter argument runs that the moral validity of an action should be based on the best interests of patients rather than the moral character of clinicians. As we have seen there may be circumstances in which the provision of LST is no longer in the best interests of children with LLI. If this is the case then some would say an action which results in the death of the patient, even if intended, may be justified.
It has been argued that the effect of the recent series of judgements in UK Courts and professional guidance is ethically incoherent since passive euthanasia that is death produced by withholding, withdrawing, or limiting LST is permitted but active euthanasia (as defined above) is not. An alternative view is that Courts are prepared to grant a great deal of discretion to the intention and professional integrity of clinicians in these intensely personal, emotional, and spiritual matters while respecting the right to punish individuals who flout or abuse their moral responsibilities. In so doing Courts recognise the difficulties facing clinicians who wish to provide compassionate palliative care but who wish to do so without the threat of prosecution [61]. However, the issue of euthanasia is likely to remain a matter of moral indeterminacy and continuing debate in adults, let alone children with LLI.
Sex and sexuality
The acknowledgement of adults' sexuality and their freedom to express it are important aspects of personal autonomy which should be respected in so far as they do not cause harm to others [62]. When adults' capacity is impaired the focus of Law is to protect them from particularly abusive relationships [63].
Children with LLI increasingly survive into adolescence and early adulthood. Although the Law defines the age at which they may enter into sexual relationships their desire to explore sexual feelings and discover their sexuality evolves before this. This is especially challenging for those with physical rather than cognitive disabilities who have the same rights as adults to protection, advice, and confidentiality. Specific concerns which need to be addressed are the voluntariness of sexual relationships, peer pressure, and vulnerability [64].
Sexual education
Children with LLI may be physically or emotionally vulnerable and as such their educational needs relating to sexual development may not be met. School curricula may cover biological aspects of sex education but omit to explore the moral tensions or develop the personal skills needed to cope with the emotional aspects and sexual experience of adolescence, especially when a child has cognitive and physical disabilities. Neither school nor parents may discuss issues such as masturbation and homosexuality. It is possible that the relationship of professionals with young people with LLI means that they are the most appropriate persons to broach them. However professionals may feel uneasy about this because of their own values and uncertainties and in the face of possible parental disapproval. But young people who are experimenting sexually may not practice safe sex and may not approach parents for advice. In these circumstances denying young people information about sex and sexuality also denies them the opportunity for protection against unwanted pregnancy and sexually transmitted diseases [65].
The scope of professional duty should be limited to education, counselling, and information sharing. This may pose problems in those adolescents who have physical disabilities and who may wish to express their sexuality, but who lack the physical ability to do so. To what extent should professionals assist them? Some form of professional assistance could be defended by appeal to the principles of beneficence and maximising respect for autonomy, for example, by helping them acquire sexually explicit videos. But it could be argued that some levels of involvement, for example, masturbation would be potentially harmful for the professional/patient relationship in that it extends it to a far more emotional level than many would feel comfortable with.
Contraception
Provision of contraception advice without parental knowledge can be given in England to those below the legal age of consent provided that they fulfil specific criteria and are able to understand fully the issues involved and the impact on their family [47]. Ethically, this satisfies the right of a competent child to make decisions and to have their confidentiality respected.
A young person with learning disabilities should be able to experience aspects of life from which they may formerly have been excluded, for example, romantic and sexual relationships. However, there is no justification for providing contraception especially if given by invasive means if the young person shows no interest in sexual activity. Provision of contraception is lawful if there is proxy consent or in the case of over 18 years old in England if it is in their best interests. The least invasive means to get the best possible results should be used and where dispute persists Court action should be taken [64].
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Abortion
If contraception fails or is not used the question of termination of pregnancy (TOP) may arise in young people with LLI. Such children may be competent to consent and TOP may be indicated on grounds of detriment to mental or physical health [64].
Confidentiality should be respected, but the young person needs to be aware of the potential emotional and psychological sequelae of abortion, and have access to counselling. Requests for confidentiality can be over-ridden if the young person is subject to a Court order or it there are good grounds to suspect exploitation or abuse [64, 66].
Conclusion
This chapter has sought to consider the ethical and legal principles that underpin end of life decision-making and the provision of palliative care in children with LLI. However, defining and applying principles cannot always relieve ethical uncertainty or perplexity. Clinicians, parents, and children will continue to disagree at times on what constitutes a child's best interests, who should determine them, and how they might be addressed [67, 68].
Differing personal, social, and religious values and beliefs between parties will fuel such disagreements. The latter include such issues as the sanctity of life, the ability of children to make decisions, the extent to which children might be forced to accede to adults' wishes, and the balance to be struck between competing rights of individuals.
Those who expect ethical analysis to provide definitive solutions to such disputes will be disappointed. However, focusing on what principles should be involved, in deciding what should be done, and the reasons for it optimises the rationality of the decision-making process [69]. Acknowledging that decision-making is hard, emotionally draining, and accepting that protagonists in the moral debate are all worthy of empathy and support, is procedurally important. In these circumstances transparency, rigour, and fairness of the decision-making process is, perhaps, ultimately more important that its outcome. It is important that the power imbalance between professionals and parents and children is minimised, as difficult as this may be for professionals. Fairness demands that due attention is paid to the narrative of the key participants and that the focus remains on the child. It is possible that Clinical Ethics Committees can provide an objective, independent forum for such discussion [49].
Perhaps the most important factor is the empathy, care, and concern of professionals in reaching out to families.
In adult medicine decisions to withdraw LST are normal in the palliative care setting and are commonly reached by mutual agreement between patients and clinicians. When a choice to withdraw LST is made, helping the patient to achieve a good death is a legitimate and ethically acceptable goal of health care [70]. From a patient's perspective the key considerations are adequate management of symptoms, avoidance of inappropriate prolongation of dying, achieving a sense of control and strengthening relationship with loved ones [71]. There is no ethical reason why similar principles should not apply to the management of children with LLI.
Whatever the outcome of the complex, often harrowing, emotionally draining, and sometimes contentious ethical and legal discussions which occur, clinicians have a fundamental duty to provide high quality, compassionate palliative care for children with LLI and their families. It is no less than they need and no more than they deserve.
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EAN: 2147483647
Pages: 47
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