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    Ethical issues in paediatric palliative care

    Bioethics involves the application of ethical principles to medical practice and research. It is 'a line of intellectual inquiry' which is said to 'begin where consensus ends'. A number of theories exist as frameworks for the consideration of ethical dilemmas but most require the consideration of four fundamental principles -

    • Autonomy - the right to self-determination
    • Non-maleficence - the need to avoid harm
    • Beneficence - the ability to do good
    • Justice
    • Each principle may take precedence over another depending on the circumstances and ethical theory employed.

    In the context of palliative care, most dilemmas relate to end-of-life care and decision-making. The child's inability to act autonomously and subsequent reliance on their parents as surrogate decision-makers complicates the resolution of these dilemmas in paediatric practice.

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    In order to act autonomously, one must act with intention and understanding and without controlling influences. In the medical context, respect for autonomy involves not only allowing the patient to make informed choices regarding their care but facilitation of this process by ensuring they are well-informed and free of conditions such as fear, pain and depression which may compromise their capacity to make truly autonomous decisions. To act autonomously, an individual must demonstrate an understanding of their situation and the implications of their decisions. They must also be able to communicate their decisions. Children represent a continuum in this regard form the non-verbal infant to the adolescent striving for self determination. A child's ability to make informed choices depends not only on their developmental level but on their life experience. For example, an eight year old child with a chronic illness may through their own experiences and those of their fellow patients be better positioned to participate in decision-making than an older child with no previous medical history.

    Children may be able to make some decisions about their medical care even where major decisions are made by others. They may for example, make choices regarding pain control and venipuncture sites. Empowering children in this way gives them a sense of control which impacts positively on their experience of care. Furthermore, even when a child is not deemed sufficiently competent to act autonomously, their preferences and insights may guide decision making by others and should be sought actively.

    Children progress through varying degrees of competence as they grow, develop and acquire life experience. Their involvement in decision-making is subject to their level of competence and this must be judged on an individual basis (see Competence). Age is not necessarily a good measure of capacity although an arbitrary distinction is drawn for legal purposes.

    Decision-making in the palliative care setting requires

    • The ability to understand one's illness in physiological terms and to conceptualise death as an irreversible phenomenon
    • The capacity to reason and consider future implications (formal operations stage of cognitive development)
    • The ability to act autonomously and not acquiesce to the authority of doctors and parents ®1

    The Royal College of Paediatrics and Child Health (UK) describes four levels of child involvement in decision-making;

    • 1/ being informed
    • 2/ being consulted
    • 3/ having views taken into account in decision-making
    • 4/ being respected as the main decision-maker ®2

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    Even young children have a right to be informed regarding decisions which affect their future. As children acquire increasing competence, involvement in decision-making progresses through the above levels. Both the Royal College of Paediatrics and Child Health and the American Academy of Paediatrics advocate strongly for the participation of children in decision-making to the extent their ability allows. Furthermore, it is important that a child's inability to communicate or participate does not mean that their suffering is excluded from benefits/burdens considerations.

    Competence is assessed according to:

    • Cognitive ability. This may be reflected in the young person's ability to provide a clinical history as well as their understanding of the condition, treatment options and the consequences of choosing one option over another. Other factors to consider include level of schooling, verbal skills and demonstrated capacity to make decisions.
    • Presence or absence of disturbed thinking (eg. in the setting of psychiatric disorder)

    If the patient is 18 years or older, and competent, decisions regarding treatment ultimately belong to him/her although most young people will involve their family in such matters. 'Mature minors' are legally able to consent to treatment if they are assessed as competent. They are not however able to consent to the withdrawal of life-sustaining treatment against their parents wishes.

    'The legal recognition of a competent minor's right to consent to medical treatment may not fully apply to a right to refuse all forms of medical treatment.' ®3

    In the majority of cases, young people and their parents will be in agreement about the most appropriate way forward. In cases of irreconcilable dispute however, the involvement of the Family Court may be required.

    Patients aged 16-18 years are generally assumed to be competent and in this way are 'mature minors'. Patients aged less than 14 years are generally assumed not to be competent. Patients aged 14-16 years require careful assessment.

    The outcome of an assessment of competence should be carefully documented including the grounds on which the patient is judged to be of sufficient maturity to make a decision.

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    Decision-making regarding life-sustaining treatment

    The modern medical practitioner has at his or her disposal a plethora of life-sustaining interventions. These should be used for the benefits they can provide to individual patients. However, there are times when the best interests of the patient are served by not implementing these interventions. The Royal College of Paediatrics and Child Health (United Kingdom) outlines five circumstances under which withholding or withdrawing curative medical treatment may be considered;

    • The child has been diagnosed as brain dead according to standard criteria
    • Permanent vegetative state. These children have 'a permanent and irreversible lack of awareness of themselves and their surroundings and no ability to interact at any level with those around them' ®4
    • 'No chance situation': life-sustaining treatment simply delays death without providing other benefits in terms of relief of suffering
    • 'No purpose' situation: the child may be able to survive with treatment but the degree of mental or physical impairment would be so great that it would be unreasonable to ask the child to bear it.
    • The 'unbearable' situation. In the face of progressive, irreversible illness, the burden of further treatment is more than can be borne.®2

    Decisions are made on the grounds of benefits/burdens proportionality. In order to justify a particular intervention, the expected benefits of that intervention must outweigh the burdens. Burdens might include intractable pain, disability, emotional suffering or other factors which seriously compromise the child's quality of life. Obviously questions about the choice of an intervention alter with time and disease progression. Thus, treatments considered reasonable in the early stages of illness when the child is enjoying a good quality of life may be seen as unreasonable later in the illness. Furthermore, each intervention should be individually subjected to this consideration. For example, a child who is not expected to benefit from ventilation may be helped symptomatically by the administration of oxygen. Importantly, the withholding or withdrawal of life-sustaining interventions should never mean the withdrawal of care. Adequate symptom control and emotional and spiritual support for the child and family must be ensured.

    'Whether or not the child can be restored to health there is an absolute duty to comfort and to cherish the child and to prevent pain and suffering' ®2

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    A Practical Approach to Decision-Making

    The following questions should be considered by all of those involved in decision-making;

    Is this intervention going to cure the disease?
    Is this intervention going to prevent progression of the disease?
    What impact will the intervention have on the child's quality of life?
    Will the intervention improve the child's symptoms?
    Will the intervention make the child feel worse?
    How long will the child feel worse for?
    What will happen without the intervention?
    How will the intervention change the outcome?

    The Question of Certainty

    It is not necessary to have absolute certainty in order to make a decision.
    '&it is enough to have a reasonable belief that something is the case - we cannot have and do not need to have absolute certainty' ®2

    As in so many areas of medicine, absolute certainty may not exist in settings where major decisions need to be made and judgement will be required to determine the appropriate way forward. There may be times when there is doubt about the potential benefits of a particular intervention. In such circumstance, it may be reasonable to conduct the treatment over a well-defined and pre-negotiated trial period. If, at the end of that time, no benefit is demonstrated or the burdens of treatment outweigh the benefits, the treatment should be withdrawn.

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    Is Withholding of Life-Sustaining Treatment Different to Withdrawal?

    Much energy has been expended debating whether there is an ethical difference between withholding and withdrawing life-sustaining treatment. The act of withdrawing an intervention such as ventilation is certainly more disconcerting for the family and health professionals involved, given the immediacy of the consequences. Ethically and legally however, there is no difference between withdrawal and withholding of an intervention. ®2 This is important as therapies may not be implemented for fear of not being able to justify their withdrawal later on. However, any intervention which may be ethically withheld may also be withdrawn. Thus, as outlined above, it may be reasonable in some circumstances to begin treatment with a view to ceasing it later on if no benefits are seen.

    Making Decisions

    'Doctors, children and informed parents share the decision; with doctors taking the lead in judging the clinical factors and parents the lead in determining best interests more generally.' British Medical Association ® 4

    End-of-life decision-making is a collaborative process. It should involve the child (where possible), the family, and all the health professionals involved in providing care to the child. An important underlying principle of the process is open communication between staff and families.

    • Children should be at least consulted and their views solicited. An assessment of competency should be made. Even when the child is very young and unable to express a view, members of the team are encouraged to consider what views the child might express if they were able. Obviously, it is impossible to be certain and this is done symbolically as a way of reflecting on the child's best interests.
    • Parents bring a detailed understanding of their child's hopes, wishes and preferences. They therefore have a key role in considerations regarding the best interests of their child. There may also be important members of the wider family who need to be included. Grandparents for example may feel distressed and concerned about decisions that are made if they have not had an opportunity to hear first hand medical information.
    • The medical consultant is ultimately responsible for subjecting treatment options to benefits/burdens proportionality. His or her expertise lies in advising the family what medical treatment is in the best interests of the child. Other members of the health care team should be consulted as each staff member brings a unique understanding of the child and family's wishes. Nursing staff often spend long periods with the family and may bring important information to the decision-making process. The participation of the General Practitioner or community paediatrician may also be beneficial. While it is unreasonable to expect consensus in all cases, staff should at least feel their views have been heard. It is also worth remembering that decisions are often implemented by nursing and junior medical staff who need to feel included in and supported by the process.

    The American Academy of Pediatrics states that
    '&physicians should do more than offer a 'menu' of choices - they should recommend what they believe is the best option for the patient under the circumstances and give any reasons, based on medical, experiential, or moral factors, for such judgements.' ®6

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    Society invests parents with the responsibility of acting on behalf of their children. There are occasions however, where parents insist on what staff may view as inappropriate treatment. Conversely, parents may refuse treatment that is of potential benefit to the child. It is important that the best interests of the child are advocated for and that decision-making is shared between the family and the health care team.

    'for desperate parents to expose fatally ill children to all manner of painful, unproven or essentially futile treatments breaches the child's right to be free from intrusion. The doctor's first duty is to the patient&Family pressure to provide aggressive intervention of dubious clinical value should be resisted.' ®7

    'Parents or surrogates may not compel a physician to provide any treatment that, in the professional judgement of that physician, is unlikely to benefit the patient' American Academy of Pediatrics ®6

    Most disagreements can usually be resolved by open and honest communication. Decision-making should be viewed as a process not an event. Families often need time to absorb and process difficult information. Where conflict can not be resolved, it may be helpful to request a second opinion from an independent practitioner. It may also be beneficial to include other family members or cultural and religious leaders from the local community. In extreme circumstances where agreement can not be reached despite the above interventions, it may be necessary to seek legal judgement.

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    Advance Directives

    Where children have an existing condition, gradual or sudden deterioration may be anticipated. It is helpful for health professionals to assist families in planning for crises so that interventions considered unhelpful to the child are not initiated. Written documentation in the medical record as well as a letter for the family to have with them is required. This should detail:

    • What has been discussed
    • Who was present
    • What decisions were made
    • What the child and family's wishes are regarding various interventions
    • Who should be called in case of crisis

    At the Royal Children's Hospital, an ALERT may be placed on the Emergency Department system informing staff of the existence of a letter or entry in the medical record as well as the appropriate consultant to call at the time of presentation.

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    This forum does not permit an extensive review of the euthanasia debate and the reader is referred to leading bioethics texts for a more detailed exploration of the subject. Most discussion in paediatric palliative care centres around passive non-voluntary euthanasia or 'selective non-treatment' in which 'death is deliberately produced by withholding or withdrawing the ordinary means of nutrition or treatment of the subject's condition'. ®8 It is important to draw a distinction here between good medical care and euthanasia. Good medical care involves making a judgement based on whether a given intervention is in the best interests of the patient. If it is not (based on benefits/burdens proportionality) then it should be withdrawn or withheld. The medical practitioner may predict that death will result but this is not the intention. Euthanasia (be it passive or active) centres on the intention to bring about the death of the patient. Health professionals do not wish to actively end patients' lives. On the other hand, they do not wish to contribute to suffering by continuing therapies which are unlikely to benefit the patient. The Royal College of Paediatrics and Child Health draws a clear distinction between palliative care and euthanasia.

    'When a dying patient is receiving palliative care, the underlying cause of death is the disease process. In euthanasia, the cause of death is the intended lethal action' ®2

    Most major medical bodies specifically reject the concept of active euthanasia.

    A practical issue which often arises in the context of palliative care is concern over whether the management of symptoms with opioids hastens death. There is currently no evidence that death is hastened when opioids and anxiolytic agents are used correctly (that is titrated upward according to patient tolerance and symptom severity) ®9
    'the knowledge and skills built up over some 30 years of palliative care practice have shown that opioids and sedative drugs can be used quite safely for symptom control without bringing causation into question if the parameters of accepted practice are followed.' ®10

    Adequate symptom control and relief of suffering should be a priority of care. In a report of the Special Senate Committee on Euthanasia and Assisted Suicide, ®11 the Chief Coroner of Ontario outlined the following principles underlying palliative care interventions;

    • Care must be intended solely to relieve suffering
    • Care must be provided in response to suffering
    • Care must be commensurate with the degree of suffering
    • Care must not be deliberate attempt to cause death

    It is worth noting that there are occasions when it may not be possible to preserve full consciousness in the presence of severe pain and distress. This is not a common scenario but the priority should always be adequate symptom control even if this renders the child drowsy or sleepy.

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    Provision of Hydration and Nutrition

    Food and fluid should always be offered if the child is able to take it by mouth. Discussion here focuses on the provision of hydration and nutrition by artificial means (ie. via nasogastric, intravenous, gastrostomy). Most authors consider the provision of nutrition and hydration by artificial means to be a medical intervention subject to the same benefits/burdens assessment as any other. The insertion of tubes into the gastrointestinal tract carries with it the burdens of discomfort and the potential for complications and therefore needs to be justified on the grounds of the benefits it may provide to the patient. Some argue however that the provision of food and fluid constitutes a basic component of humane care and can never be withdrawn or withheld. In the paediatric setting, this concept is extended by the centrality of feeding to the parental role and the vulnerability of infants and small children. Children in the terminal phase of illness will naturally cease eating and drinking as their requirements decrease and it is not necessary in these circumstances to provide fluid and nutrition by artificial means. ®12 Parents may find it extremely difficult not to provide sustenance for their child and will require the support of staff. Some parents find their decision is questioned by members of the extended family and friends who are not privy to all the relevant information.

    The effect of the provision or omission of artificial hydration and nutrition on the timing of death is uncertain. ®13 Likewise, the impact of this intervention on patient comfort in terminal illness is poorly understood although emerging data indicates that hydration status and thirst are not related in a predictable way ®14,15. It is worth noting that dehydration may contribute to opioid toxicity, delirium and constipation and may require correction to alleviate these distressing clinical predicaments.

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    Medical Ethics in different cultures

    It is important to understand the limitations of Western ethics. The beliefs, values and conceptual frameworks used by other cultures must be considered when making decisions with families. The most appropriate source of information is the family itself as there will be considerable variability within cultural groups. There is some benefit however in understanding how ethical principles are applied in different cultural settings. The following articles may be of interest. More reference material will be added to this section over time.

    Gatrad AR, Sheikh A. Medical ethics and Islam: principles and practice. Arch Dis Child 2001; 84: 72-75

    Da Costa DE, Ghazal H, Al Khusaiby S. Do Not Resuscitate orders and ethical decisions in a neonatal intensive care unit in a Muslim community. Arch Dis Child (Fetal and Neonatal Edition) 2002; 86: F115-119.


    The authors would like to acknowledge the kind assistance of Dr.Lyn Gillam in reviewing the manuscript.

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    1/ Leikin S. A proposal concerning decisions to forgo life-sustaining treatment for young people. J Pediatrics 1989; 115: 17-22.
    2/ Royal College of Paediatrics and Child Health. Withholding or Withdrawing Life
    Saving Treatment in Children. London, 1997.
    3/ Young People and Informed Consent Project. Joint publication of the Australian Medical Association and Medical Practitioners Board of Victoria.(In Press) Victoria 2002.
    4/ British Medical Association. Withholding and Withdrawing Life Prolonging Medical
    Treatment. Guidance for Decision Making. British Medical Journal Books. London 2001.
    5/ Frager G. Palliative care and terminal care of children. Child Adolescent Psychiatr Clin North Am 1997; 6: 889-909.
    6/ American Academy of Paediatrics. Guidelines on forgoing life-sustaining medical treatment. Pediatrics 1994; 93: 532-536.
    7/ British Medical Association. Medical Ethics Today: Its Practice and Philosophy. London; BMA, 1993: 76.
    8/ Wilkinson J. The ethics of euthanasia. Palliat Med 1990; 4: 81-86.
    9/ Ashby M, Stoffell B. Therapeutic ratio and defined phases: proposal of ethical framework for palliative care. Br Med J 1991; 302: 1324-6.
    10/ Ashby M. On causing death. Med J Aust 2001; 175: 517-8.
    11 Minister of Supply and Services. Of life and death: Report of the Special Senate
    Committee on Euthanasia and Assisted Suicide. Ottawa: Canada 1995; 26:27.
    12/ Nelson LJ, Rushton CH, Cranford RE, et al. Forgoing medically provided nutrition
    and hydration in pediatric patients. J Law Med Ethics 1995; 23: 33-46.
    13/ Ashby M, Stoffel B. Artificial hydration and alimentation at the end of life: a reply to
    Craig. J Med Ethics 1995;21:135-140.
    14/ Brody H, Campbell ML, Faber-Langandoen K, Ogle KS. Withdrawing intensive life-
    sustaining treatment-recommendations for compassionate clinical management. New Engl J med 1997: 336: 652-656.
    15/ Printz LA. Is withholding hydration a valid comfort measure in the terminally ill? Geriatrics 1988: 43: 84-87.

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