“The purpose of medicine is to do away with the sufferings of the sick to lessen the violence of disease and to refuse to treat those who are overmastered by their disease.” Hippocrates.
In this chapter I review the ethical and professional context for end-of-life care decisions by clinicians, parents, and children. In particular, I will look at the UK medical guidance and legal framework that underpins the issues of futility and quality of life (QOL) judgments which often have to be faced in this area of clinical care. I will focus on the situation when the child or young person lacks the capacity to decide for themselves because of immaturity or illness.
Professional guidelines on withholding and withdrawing treatment
A variety of guidelines have been produced to help professionals faced with decisions about withholding or withdrawing LST, including decisions involving children. Guidance for UK paediatricians on end-of-life decision-making was produced by the Royal College of Paediatrics and Child Health (RCPCH) (2004).  Other relevant advice has been produced by the British Medical Association (BMA) (2007),  while the General Medical Council (GMC) recently updated useful general guidance on end-of-life care (GMC 2010). The GMC document provides a structured decision-making model if the patient lacks capacity to decide for themselves (paragraph 16). Further, there is a specific section in relation to neonates, children and young people (paragraphs 92-108).
All these professional bodies preface their guidance with reviews of the ethical and professional principles that must underpin such decision-making. A number of key themes are evident.
Respect for the sanctity of life principle
Based on the monotheistic Judeo-Christian-Islamic tradition, the sanctity of life principle is founded on the view is that life a precious gift from God, intrinsically valuable in its own right. Thus all human life has worth and we have a duty to preserve it. This principle has long been accepted in most civilised societies including our secular society, where the “right to life” is enshrined within Article 2 of the European Convention on Human Rights, included within Schedule 1 of the Human Rights Act (HRA) 1998. 
Reflecting this principle all the guidelines emphasise that, in general, there must be a presumption that doctors, in fulfilling their duty of care, will take all reasonable positive steps to prolong life where possible and clinically indicated.
Intentional killing is unlawful
All professional guidance emphasises that any action taken by doctors primarily motivated by a desire to bring about a patient’s death is unlawful,  a fundamental legal principle reflected in the prohibition of intentional killing and the common law basis of murder. 
However, it is accepted that it is not an appropriate goal of medicine to preserve life at all costs, irrespective of other considerations such as dignity, the burdens of treatment, the quality of the patient’s ongoing life, and the patient’s views if known, or that of those closest to them.  Thus withholding or withdrawing futile treatment or the use of sedative medication to relieve intolerable suffering in the last days of life, even if the process of dying is secondarily accelerated, are morally and professionally acceptable.
Decisions must be in the child’s best interests
All professional medical bodies emphasise that the fundamental basis of any decision by all involved is that it should be in the patient’s [child’s] best interests.  The GMC guidance notes that the term ‘best interests’ is widely accepted to include weighing up the benefits, burdens and risks of treatment for that individual child, and includes a determination of ‘overall benefit’. Best interests are not limited to clinical considerations, and other factors [unspecified] should be carefully taken into account (paragraph 92).
The RCPCH guidance states (para 22.214.171.124.):
[A]ll members of the health team, in partnership with the parents, have a duty to act in the best interests of the child. This includes sustaining life and restoring health to an acceptable standard. However, there are circumstances in which treatments that merely sustain ‘life’ neither restore health nor confer other benefit and hence are no longer in the child’s best interests.
The courts have also made clear that the child’s best interests are paramount. 
Factors to be considered in determining what is in a child’s best interests have been proposed by the Nuffield Council on Bioethics (2006, paras 9.30-9.34): 
The degree of pain, suffering and mental distress that treatment is likely to inflict, or is inflicting, on the child.
The likely future benefits the child might get from treatment. Will the child be able to survive independently of life support, be capable of establishing relationships with other people and be able to experience pleasure of any kind?
The extent to which treatment is likely to effect a significant prolongation of a child’s life (as opposed to simply prolonging the dying process).
The level of support likely to be available to assist in long-term care for the child.
The views and feelings of the parents as to the interests of the child.
Parents must be involved in end-of-life decision-making about their children
All guidance emphasises both the statutory and moral rights of parents to contribute to the decision-making process when their children are unable to decide for themselves (e.g. GMC 2010, paragraph 95).
Most children with serious acute life-threatening illnesses are unable to decide for themselves or even contribute to that decision – often they do not have the developmental capacity or are too ill (and thus are incompetent from a legal standpoint). In such situations, it is accepted in English law (Children Act 1989) that the parents have the authority to make healthcare decisions on their behalf, including the right to give consent to or refuse medical treatment. 
There is a longstanding assumption that parents act in the best interests of their children. While biological parenthood is no guarantee of good parenting, this is founded on an assumption that their love and commitment to their child’s welfare and the social, cultural and family setting in which they live make them best placed to make such decisions on their behalf.
It can be argued that a reasonable parent would not want to discontinue treatment that provides a good chance for the child of long term benefit over short term harm (Doyal & Larcher 2000). Similarly a reasonable parent would not want treatment that is medically futile or that prolongs an unbearable life. However, some parents may feel that by at least trying, their child was given every chance; they only accept the futility of such treatment after it has been initiated (Balfour-Lynn & Tasker 1996). This reflects some of the difficulties parents face in making such decisions.
While the views of parents carry great weight, GMC guidance makes it clear that doctors must decide whether a particular treatment should be given or withheld:
If you are…in charge of a patient’s care, it is your responsibility [my italics] to make the decision about whether to withhold or withdraw a life-prolonging treatment, taking account of the views of the patient or those close to the patient (paragraph 32).
The RCPCH’s five circumstances for withholding or withdrawal of LST
The RCPCH has produced a guidance document to inform and support paediatricians faced with deciding whether or not withdrawal of LST is appropriate for their particular patient (RCPCH 2004). This is described as offering a “framework [that] is not a prescriptive formula…but an attempt to guide management in individual cases with the fundamental aim to consider and serve the best interests of the child” (page 8).
Within this framework, the guidance proposes five situations where it may be ethical and legal to consider withholding or withdrawing LST (pages 10-11):
The brain dead child.
The permanent vegetative state: Those who are reliant on others for all care and do not react or relate with the outside world.
The ‘No chance’ situation: A child who has such severe disease that life-sustaining treatment simply delays death without significant alleviation of suffering.
The ‘No purpose’ situation: A patient who may be able to survive with treatment but in whom the degree of physical or mental impairment will be so great that it is unreasonable to expect them to bear it.
The ‘Unbearable’ situation: Where the child and/or family feel that in the face of progressive and irreversible illness further treatment is more than can be borne.
However, while the RCPCH guidelines deal with the ethical and legal aspects of treatment withdrawal and offer general guidance, they cannot offer specific advice in relation to individual children (Wellesley & Jenkins 2009).
The RCPCH guidelines seem to have proved extremely influential (Elliman 2009) and have been repeatedly referred to in court judgments.  As Sir Mark Potter P observed in Re K, the RCPCH guidelines are “not authoritative as to the law”, but “…provide a framework on which to construct a reasoned and compassionate approach to withholding or withdrawing treatment from patients.” 
In Re K, Sir Mark Potter P held that categories 3 and 4 of the guideline applied. K was a five-month-old who suffered from inevitably fatal congenital myotonic dystrophy. Here, treatment would delay inevitable death but would neither improve her quality of life nor her potential (the ‘no chance’ situation) and she had already developed such a degree of irreversible impairment that it would be unreasonable to expect her to bear further treatment (the ‘no purpose’ situation). Court directions had previously been obtained to withhold future mechanical ventilation, and the further decision here was to agree discontinuation of intravenous feeding, with death expected within a few days.  Of note, her parents fully supported the doctors’ advice, but since she was a ward of court, a referral for a judicial ruling was mandatory.
In re OT a similar judgment of both a ‘no chance’ and ‘no purpose’ situation was made. The latter is described in the RCPCH document to be where:
“[c]ontinuing treatment might leave the child in a worse condition than already exists with the likelihood of further deterioration leading to an ‘impossibly poor life’…If it is likely that future life will be ‘impossibly poor’ then treatment may be reasonably withheld” (paragraph 3.1.3; page 29).
What exactly is judged to represent an ‘impossibly poor’ life raises the issue of assessing a child’s future QOL, for despite the problems associated with this, QOL considerations are unavoidable when discussing use or withdrawal of LST, and the courts have specifically emphasised (see later) that QOL is an appropriate factor to consider when making treatment decisions.
Quality of Life judgments and withholding or withdrawing LST
As noted above, QOL assessment is a fundamental element that should inform medical (and judicial) decision-making in this context, but it is a broad and indeterminate concept comprised of several “qualities” whose relative importance is uncertain (Hendrick 2000).
However, there are situations when a patient’s QOL must be judged by others, when patients are incompetent to consider it for themselves. Here a key factor often considered in QOL assessments is the patient’s awareness of his or her own environment and ability to interact with it, shown by being able to socially interact with others, awareness of his/her own existence, and having an ability to take pleasure in the fact of existence (BMA 1999).
However, when such judgments must be made by others on a patient’s behalf, there are clearly significant risks that individuals will impose their own values and goals. Thus, doctors and others may include a subjective value judgment in such situations (Gampel 2006).
How are such judgments about quality of life in children to be made?
Most studies that have examined QOL as a decision-making factor have involved adult patients. Some consider that no-one can make a QOL for another, especially for an infant or a child who has had no opportunity to experience life. 
Quality of life cannot be measured like blood pressure or temperature. There are no units involved in quality of life –only vague guesswork and assumption. There is often an assumption about children who are unconscious but how do we know that that child is suffering a poor quality of life? The concept of quality of life is disgustingly sloppy thinking. It allows the doctor to pick and choose. 
In the non-adult age group, most published studies have involved newborns, since most deaths are in this age-group and there are only a small number of studies examining the decision-making factors in the withdrawal of LST in older children (Street et al. 2000). They confirm that, as in all age groups, poor prognosis and imminent death are the most important factors in decisions to withdraw care, and it is evident that physicians seem reluctant to use QOL judgments in decision making regarding children, compared to neonates and adults (Levetown et al. 1994; Mink & Pollack 1992; Randolph et al. 1997).
Perhaps this is because such judgments can be inconsistent, with a significant lack of agreement reported among paediatric specialists, particularly in a PICU setting, about the most appropriate level of care to offer the same child (Randolph et al. 1999). It is also clear that it is very difficult to predict the QOL in children who survive critical illness (Allport et al. 2008), and so decisions to withdraw therapy must be made with great caution.
This at least raises significant questions about how effectively individual clinicians make significant decisions based on QOL considerations when, except for neonatal intensive care specialists, paediatricians will be involved in making such decisions relatively infrequently.
QOL assessment in children
Christine Eiser has worked extensively on children’s QOL measures (Eiser 1997), usually focussed on chronic illness rather than specifically linked to end-of-life decision-making. She notes that there is a consensus that QOL is a multidimensional measure; it is not restricted to either physical or psychological effects of treatment. A variety of QOL assessment tools are available, primarily used in research for specific conditions or narrow circumstances. They do not provide a useful mechanism to of assessing QOL as part of a best interests judgment (BMA 2007, para 6.1, page 10).
Children differ from adults in their views about their QOL. For the elderly, for example, an ability to live independently is a key positive indicator, while for young children QOL may be about having very shiny hair, lots of friends, or running fast; it is not about achievement of basic functional tasks (Millstein & Irwin 1987).
Children and their parents often perceive things differently from their doctor. When children and families are asked about their perception of the child’s QOL, their views often correlates poorly with their doctor’s opinion, or with traditional physiological measures of severity (Knowles et al. 2007). Outside a PICU setting, there is evidence that doctors’ ability to assess their patients’ perceptions of their QOL is often poor, while parents and physicians may look differently at the impact of the disease on children (Janse et al. 2005).
This suggests doctors’ judgments about a child’s QOL and how that should link to decisions about withholding or starting LST must be treated very cautiously.
While it seems straightforward to recognise that intractable pain and distress are burdens that have a major impact on QOL assessments and decisions to continue LST, can a child’s life be judged not worth living in the absence of pain and distress?
According to the Nuffield Council Report Critical care decisions in fetal and neonatal medicine: ethical issues (2006), some infants’ likely future QOL is so poor as to be intolerable, and giving treatments to keep them alive even if the therapy is not particularly burdensome is inappropriate (para 2.13) – imposing an unacceptable burden on them by keeping them alive.
This concept of an ‘intolerable life’ seems to chime with the ‘impossibly poor’ life of the RCPCH document. Further, we will see in the next chapter on the case law underpinning judicial consideration of such cases that the concept of ‘intolerability’ is a major decision-making element that has informed such judgments.
In the vast majority of cases where these difficult and emotionally challenging decisions must be made, an agreement is reached between the treating doctors, the extended healthcare team, and the child’s parents about the most appropriate course of action.
Rarely, however, an agreement cannot be reached between these parties and in such circumstances there is no option but to seek a judicial ruling on the case.
Therefore, having discussed the professional and ethical framework that underpins decisions about whether or not to use LST in children, I now turn to the legal basis on which judicial rulings in such cases are founded.
Chapter 2 References:
Allport, T., Read, L., Nadel, S. & Levin, M. 2008, “Critical Illness and Amputation in Meningococcal Septicemia: Is Life Worth Saving?”, Pediatrics, vol. 122, no. 3, pp. 629-632.
Balfour-Lynn, I.M. & Tasker, R.C. 1996, “At the coalface–medical ethics in practice. Futility and death in paediatric medical intensive care”, J.Med.Ethics, vol. 22, no. 5, pp. 279-281.
British Medical Association 2007, Withholding and Withdrawing Life-prolonging Medical Treatment: Guidance for decision making, 3rd edn, Wiley-Blackwell, Oxford.
British Medical Association 1999, Withholding and withdrawing life-prolonging medical treatment: Guidance for decision making, BMJ Books, London.
Doyal, L. & Larcher, V.F. 2000, “Drafting guidelines for the withholding or withdrawing of life sustaining treatment in critically ill children and neonates”, Archives of Disease in Childhood – Fetal and Neonatal Edition, vol. 83, no. 1, pp. F60-F63.
Eiser, C. 1997, “Children’s quality of life measures”, Archives of Disease in Childhood, vol. 77, no. 4, pp. 350-354.
Elliman, S. 2009, “An intolerable situation”, Solicitors Journal, [Online], vol. 153, no. 36, pp. 5 July 2010. Available from: http://www.withyking.co.uk/cms/document/Simon_Elliman_for_Solicitors_Journal.pdf.
Gampel, E. 2006, “Does professional autonomy protect medical futility judgments?”, Bioethics, vol. 20, no. 2, pp. 92-104.
General Medical Council 2010, Treatment and care towards the end of life: good practice in decision making, General Medical Council, London.
Hendrick, J. 2000, Law and Ethics in Nursing and Health Care, Stanley Thornes, Cheltenham, UK.
Janse, A.J., Sinnema, G., Uiterwaal, C.S.P.M., Kimpen, J.L.L. & Gemke, R.J.B.J. 2005, “Quality of life in chronic illness: perceptions of parents and paediatricians”, Archives of Disease in Childhood, vol. 90, no. 5, pp. 486-491.
Knowles, R.L., Griebsch, I., Bull, C., Brown, J., Wren, C. & Dezateux, C. 2007, “Quality of life and congenital heart defects: comparing parent and professional values”, Archives of Disease in Childhood, vol. 92, no. 5, pp. 388-393.
Levetown, M., Pollack, M.M., Cuerdon, T.T., Ruttimann, U.E. & Glover, J.J. 1994, “Limitations and withdrawals of medical intervention in pediatric critical care”, JAMA, vol. 272, no. 16, pp. 1271-1275.
Millstein, S.G. & Irwin, C.E.,Jr 1987, “Concepts of health and illness: different constructs or variations on a theme?”, Health Psychology, vol. 6, no. 6, pp. 515-524.
Mink, R.B. & Pollack, M.M. 1992, “Resuscitation and Withdrawal of Therapy in Pediatric Intensive Care”, Pediatrics, vol. 89, no. 5, pp. 961-963.
Nuffield Council on Bioethics 2006, Critical Care Decisions in Fetal and Neonatal Medicine: Ethical Issues, Nuffield Council on Bioethics, London.
Randolph, A.G., Zollo, M.B., Wigton, R.S. & Yeh, T.S. 1997, “Factors explaining variability among caregivers in the intent to restrict life-support interventions in a pediatric intensive care unit”, Critical care medicine, vol. 25, no. 3, pp. 435-439.
Randolph, A.G., Zollo, M.B., Egger, M.J., Guyatt, G.H., Nelson, R.M. & Stidham, G.L. 1999, “Variability in Physician Opinion on Limiting Pediatric Life Support”, Pediatrics, vol. 103, no. 4, pp. e46.
Royal College of Paediatrics and Child Health 2004, Withholding or withdrawing life sustaining treatment in children: a framework for practice. 2nd edn, RCPCH, London.
Wellesley, H. & Jenkins, I.A. 2009, “Withholding and withdrawing life-sustaining treatment in children”, Pediatric Anesthesia, vol. 19, no. 10, pp. 972-978.
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