Ethical and legal
A child’s right to die: who should decide? Peter Ellis, Guy’s Hospital, London When deciding whether to treat children, quality of life is as important as quantity of life. There is some confusion over who has the right to make these treatment decisions. Healthcare professionals are often not the most appropriate decision makers.
Mr Ellis is a Staff Nurse in the Renal Unit at Guy’s Hospital, London
406
T .
here is nothing more likely to pro mote lively and emotional debate than the death, or potential death, of a child. When considering this it seems tragic for that life to be cut so short. However, the unhappi ness or misery that continued life might mean for that child is often not taken into account as much as it is in care of the elderly. Recently the press reported the story of 4-year-old Daniel Stoneman who has a brain tumour (Rayment and Fowler, 1992). His mother, Angela Stoneman, has decided that since there is only a 30% chance of a cure, she does not want him to have radio therapy treatment. Daniel has already had four courses of chemotherapy and these have made him frail — frail enough to ask to be allowed to die because of his endless pain. The doctors in this case have queried whether Angela Stoneman was depressed when she made this decision as ‘one could be justified in overruling a decision that was formerly defective’ (Hackler cited in Smith, 1984), i.e. a decision made by someone who was in no state of mind to make one. Des pite being assured that in fact Angela was not depressed the doctors have sought to override her decision.
acquires sufficient understanding to make his own decisions’ (Her Majesty’s Sta tionery Office, 1989). This leaves us asking when does the child reach this stage and who has the greatest right to make a deci sion on behalf of a child — the professional or the parent?’ When presiding in the case of Baby J — a child with an immense physical handicap and a very poor quality of life — Lord Donaldson and Lord Justice Taylor intro duced a test previously unknown in mod ern law: the test of ‘substituted judgment’ (Grubb, 1991). This ensures that any judg ment must be made from the viewpoint of the child. In philosophical thought this view is call ed being ‘participant’. This is difficult with children as they have never been competent and thus will never have expressed a mean ingful view on which such judgments can be based. Therefore, any application of sub stituted judgment can only be a matter of speculation. However, it docs provide a good guide for decision-makers to follow. After all, the child is a unique human being with feelings that must be taken into ac count. Benjamin and Curtis (1986) identify two types of decisions that may be taken in the clinical field (Table 1).
Decision-making for the infant
Ethical approaches
Any decision made for a child will be non voluntary as it is impossible to obtain genu ine, informed consent from children as they are not ‘competent’ adults. Wringe (1981) states two reasons why children are not competent to give their informed consent in situations concerning their own health. First, they cannot be expected to under stand the concept of consent and therefore cannot exercise it. Second, children are not really capable of weighing up the pros and cons of the various courses of action that may be taken. It is true to say that a child is capable of giving assent to a decision and that ‘com mon law has never regarded that the child cannot give consent’ (Young, 1991). In deed, the 1989 Children’s Act states: ‘Pa rental responsibility diminishes as the child
There are many ethical approaches to situ ations like this one. Aesthetics (i.e. the eth ics of ‘pleasing appearances’) would suggest that as Daniel is Mrs Stoneman’s child the decision should therefore be made by him and her together. However, it is difficult to decide whether treatment or non-treatment is the correct option as both are aes thetically undesirable; the former because it means overruling a parental decision and will cause a decline in Daniel’s quality of life, the latter because it means nothing has been done to stop his certain death. Where then can we turn for guidance in this case? The consequentialist school of ethical thought decrees that an ethical action should prove beneficial, or at least cause no harm. Non-consequentialists believe that only actions that are in themselves good British Journal of Nursing, 1992, Vol I , No ft
Downloaded from magonlinelibrary.com by 129.215.017.190 on January 15, 2019.
A child’s right to die: who should decide?
Table I. Tw o types of decisions in the clinical field Medical decisions in the technical sense
These concern drug regimes, surgical procedures, etc. Doctors are the people best placed to undertake these types of decisions by virtue of their training and specialist knowledge. Medical decisions in the contextual sense
These decisions concern personal feelings, values, principles and opinions; they do not require medical knowledge. However, this may affect the decision made. It is with these more subjective decisions that nurses and patients should be involved. It is this type of decision that is being made for Daniel, and this is why Mrs Stoneman’s and Daniel’s opinions are of as much, if not more, importance than that of the doctor’s in this case.
(i.e. moral) are undertaken (Beauchamp and Childress, 1983). However, what is differ ent in this case is that the doctors are not sure that the course of treatment they are offering will in fact save Daniel’s life — un like the classic case of a child of a Jehovah’s witness where it is known that a blood transfusion will save the child’s life. The quality of the life that Daniel will be left with is difficult to predict. Daniel’s mother is reported as saying that ‘his head will not grow, part of his brain will be damaged and he will have to be fed by tube for the rest of his life’ (Rayment and Fowler, 1992). Grubb (1991) reports Lord Justice Balcombe as saying: ‘To preserve life at all costs, whatever the quality of the life to be preserved, and however distressing to the ward, i.e. the child ... , may not be in the interests of the ward.’
Conclusion
He did in fact agree with the parents in this case (Baby J) who wanted to stop all treat ment for their baby who had an infinitely poor quality of life. What Lord Justice Balcombe means is that sometimes treat ment is not always the best policy and sometimes the most humane thing to do is to allow the child to die. However, as Barnard (1985) points out: ‘many people believe that “where there is life there is hope” . . . I know this is not true . . . but doctors do not like let ting people die’. This is an understandable viewpoint es pecially when considering the Hippocratic oath. However, it may not always be the best option for the patient involved. It is uncertain whether treating Daniel will provide the best overall outcome, i.e. whether the end will justify the means. From a consequentialist’s viewpoint it is impossible to decide which of the two part ies is correct. Overriding the decision of Mrs Stoneman would be thought of as British Journal of Nursing, 1992, Voi l.N o N
wrong because whatever the outcome, it is she who will have to live more closely with the result, not the doctors. Therefore, she is entitled to take the decisions that are going to affect her life. The non-consequentialist school of thought pays scant regard to the outcome and relies heavily for guidance on principles and duties. It prescribes that only actions that are good in themselves should be undertaken. Kant states: ‘so act that you can wish your action to be a universal rule for all’ (Sontag, 1984). What is interesting about duties is that one man’s duty is another man’s right. When a person chooses to exercise a right which does not correspond with other people’s interpretation of their duty, then a dilemma is created. Because Mrs Stoneman chooses to exercise her right of autonomy by allowing her son to die, this conflicts with the doctors’ duty to preserve life at all costs. If Mrs Stoncman and Daniel decided to go ahead with the treatment, thereby exercising Daniel’s right to life, or if the doctors decided to allow her to make the decision (for Daniel not to continue treatment) unhindered, exercising the prin ciple of respect for personal autonomy, then there would be no dilemma. As with the consequentalist view, it is difficult to justify either stance as neither the act of allowing the child to die, nor the act of challenging autonomy are in them selves good. The only conclusion that one can come to in a case like this is that there is no right answer. The focus of the problem is that Daniel is not seen as being capable of mak ing a non-treatment decision entirely by himself by virtue of the fact that he is a young child. It is unlikely that in his short life he has developed an adequate grasp of the differentiation between quality and quantity of life and therefore will not be able to weigh up whether it is worth his while undertaking treatment on the offchance that his life span will be increased. The onus is therefore on those who are charged with his care to make this decision for him, i.e. his mother and the doctors concerned with the case. As Grubh (1991) states, ‘what the incompetent would do if she or he could make the choice is simply a matter of speculation.’ This is because they have never been of an age to express an opinion on such matters and therefore all one can do is to make a decision with which one is comfortable. As Thoreau says, ‘the only obligation which I have a right to assume is to do at any time what 1 think right’ (Singer, 1990). In cases like Daniel’s this is perhaps the best guidance.
407 Downloaded from magonlinelibrary.com by 129.215.017.190 on January 15, 2019.
A child’s right to die: who should decide?
Wright (1988) asks a pertinent question: ‘In a culture of “freedom of choice” for the individual, can we choose death as wilfully as we might anything else? And if not able ourselves, should others not have the right to choose for us?’ I would suggest that Daniel and his mother should be the primary decision-makers, as long as they are fully informed of all poss ible outcomes. After all, Mrs Stoneman is the child’s mother and there can be no stronger motivation than love for making a right decision. Whether you agree with the above inter-
KEY POINTS • Sometimes the professional is not the best person to make a non-treatment decision. • Quality of life must be taken into account when deciding whether to treat or not to treat a child. • Preservation of life is not always in the patient’s best interests. • The best ethical actions will, on balance, provide the greatest overall benefit for all concerned. • Nurses should formulate their own ethical opinions and act on them.
pretation or not, nurses ‘should possess their own set of personal ethics and act on them’ (Ellis, 1992). For some nurses this may mean advocating on behalf of the mother’s right to make such a decision. For others, it may mean advocating that the child be given every chance to live, no mat ter how slim. Whatever the nurse’s opinion, he/she must act upon it and not allow others to take the moral lead.
Barnard C (1985) Good Life, Good Death: A Doctor’s Case for Euthanasia and Suicide. Peter Owen, London Beauchamp TL, Childress JF (1983) Principles of Biomedial Ethics. Oxford University Press, Ox ford Benjamin M, Curtis J (1986) Ethics in Nursing, 2nd edn. Oxford University Press, Oxford Ellis P (1992) Role of the nurse advocate. Br J Nurs 1(1): 40-3 Grubb A (1991) Treating handicapped babies. Dis patches (Newsletter of the Centre of Medical Law and Ethics, King’s College, London) 1(3): 6-7 Her Majesty’s Stationery Office (1989) An Introduc tion to the Children’s Act 1989. HMSO, London Rayment T, Fowler R (1992) Let Daniel die in peace: a mother’s tragedy. Doctors consider court action to keep boy alive. The Sunday Times, May 17th: Singer P (1990) Practical Ethics. Cambridge University Press, Cambridge Smith D, ed (1984) Respect and Care in Medical Ethics. University Press of America, London Sontag F (1984) Elements o f Philosophy. Charles Scribner and Sons, New York Wright S (1988) The power over death. Nurs Standard
2(11): 22
• Nurses should not take a ‘backseat’ when ethical decisions are being made.
Wringe C (1981) Children’s Rights: A Philosophical Study. Routledge & Kegan Paul, London Young A (1991) Law ana Professional Conduct in Nursing. Scutari Press, London
MAKE SURE OF YOUR COPIES OF BJN If you are having trouble obtaining a copy of British Journal of Nursing from your local newsagent then please get in touch with us immediately and we will ensure that your copy of BJN keeps on coming. Now post this form to: The Publisher BJN, Croxted Mews, 288 Croxted Road, London SE24 9DA. (Tel: 081-671 7521). NAME................................................................................................................................................................................. ADDRESS............................................................................................................................................................................
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A child’s right to die: who should decide? Peter Ellis, Guy’s Hospital, London When deciding whether to treat children, quality of life is as important as quantity of life. There is some confusion over who has the right to make these treatment decisions. Healthcare professionals are often not the most appropriate decision makers.
Mr Ellis is a Staff Nurse in the Renal Unit at Guy’s Hospital, London
406
T .
here is nothing more likely to pro mote lively and emotional debate than the death, or potential death, of a child. When considering this it seems tragic for that life to be cut so short. However, the unhappi ness or misery that continued life might mean for that child is often not taken into account as much as it is in care of the elderly. Recently the press reported the story of 4-year-old Daniel Stoneman who has a brain tumour (Rayment and Fowler, 1992). His mother, Angela Stoneman, has decided that since there is only a 30% chance of a cure, she does not want him to have radio therapy treatment. Daniel has already had four courses of chemotherapy and these have made him frail — frail enough to ask to be allowed to die because of his endless pain. The doctors in this case have queried whether Angela Stoneman was depressed when she made this decision as ‘one could be justified in overruling a decision that was formerly defective’ (Hackler cited in Smith, 1984), i.e. a decision made by someone who was in no state of mind to make one. Des pite being assured that in fact Angela was not depressed the doctors have sought to override her decision.
acquires sufficient understanding to make his own decisions’ (Her Majesty’s Sta tionery Office, 1989). This leaves us asking when does the child reach this stage and who has the greatest right to make a deci sion on behalf of a child — the professional or the parent?’ When presiding in the case of Baby J — a child with an immense physical handicap and a very poor quality of life — Lord Donaldson and Lord Justice Taylor intro duced a test previously unknown in mod ern law: the test of ‘substituted judgment’ (Grubb, 1991). This ensures that any judg ment must be made from the viewpoint of the child. In philosophical thought this view is call ed being ‘participant’. This is difficult with children as they have never been competent and thus will never have expressed a mean ingful view on which such judgments can be based. Therefore, any application of sub stituted judgment can only be a matter of speculation. However, it docs provide a good guide for decision-makers to follow. After all, the child is a unique human being with feelings that must be taken into ac count. Benjamin and Curtis (1986) identify two types of decisions that may be taken in the clinical field (Table 1).
Decision-making for the infant
Ethical approaches
Any decision made for a child will be non voluntary as it is impossible to obtain genu ine, informed consent from children as they are not ‘competent’ adults. Wringe (1981) states two reasons why children are not competent to give their informed consent in situations concerning their own health. First, they cannot be expected to under stand the concept of consent and therefore cannot exercise it. Second, children are not really capable of weighing up the pros and cons of the various courses of action that may be taken. It is true to say that a child is capable of giving assent to a decision and that ‘com mon law has never regarded that the child cannot give consent’ (Young, 1991). In deed, the 1989 Children’s Act states: ‘Pa rental responsibility diminishes as the child
There are many ethical approaches to situ ations like this one. Aesthetics (i.e. the eth ics of ‘pleasing appearances’) would suggest that as Daniel is Mrs Stoneman’s child the decision should therefore be made by him and her together. However, it is difficult to decide whether treatment or non-treatment is the correct option as both are aes thetically undesirable; the former because it means overruling a parental decision and will cause a decline in Daniel’s quality of life, the latter because it means nothing has been done to stop his certain death. Where then can we turn for guidance in this case? The consequentialist school of ethical thought decrees that an ethical action should prove beneficial, or at least cause no harm. Non-consequentialists believe that only actions that are in themselves good British Journal of Nursing, 1992, Vol I , No ft
Downloaded from magonlinelibrary.com by 129.215.017.190 on January 15, 2019.
A child’s right to die: who should decide?
Table I. Tw o types of decisions in the clinical field Medical decisions in the technical sense
These concern drug regimes, surgical procedures, etc. Doctors are the people best placed to undertake these types of decisions by virtue of their training and specialist knowledge. Medical decisions in the contextual sense
These decisions concern personal feelings, values, principles and opinions; they do not require medical knowledge. However, this may affect the decision made. It is with these more subjective decisions that nurses and patients should be involved. It is this type of decision that is being made for Daniel, and this is why Mrs Stoneman’s and Daniel’s opinions are of as much, if not more, importance than that of the doctor’s in this case.
(i.e. moral) are undertaken (Beauchamp and Childress, 1983). However, what is differ ent in this case is that the doctors are not sure that the course of treatment they are offering will in fact save Daniel’s life — un like the classic case of a child of a Jehovah’s witness where it is known that a blood transfusion will save the child’s life. The quality of the life that Daniel will be left with is difficult to predict. Daniel’s mother is reported as saying that ‘his head will not grow, part of his brain will be damaged and he will have to be fed by tube for the rest of his life’ (Rayment and Fowler, 1992). Grubb (1991) reports Lord Justice Balcombe as saying: ‘To preserve life at all costs, whatever the quality of the life to be preserved, and however distressing to the ward, i.e. the child ... , may not be in the interests of the ward.’
Conclusion
He did in fact agree with the parents in this case (Baby J) who wanted to stop all treat ment for their baby who had an infinitely poor quality of life. What Lord Justice Balcombe means is that sometimes treat ment is not always the best policy and sometimes the most humane thing to do is to allow the child to die. However, as Barnard (1985) points out: ‘many people believe that “where there is life there is hope” . . . I know this is not true . . . but doctors do not like let ting people die’. This is an understandable viewpoint es pecially when considering the Hippocratic oath. However, it may not always be the best option for the patient involved. It is uncertain whether treating Daniel will provide the best overall outcome, i.e. whether the end will justify the means. From a consequentialist’s viewpoint it is impossible to decide which of the two part ies is correct. Overriding the decision of Mrs Stoneman would be thought of as British Journal of Nursing, 1992, Voi l.N o N
wrong because whatever the outcome, it is she who will have to live more closely with the result, not the doctors. Therefore, she is entitled to take the decisions that are going to affect her life. The non-consequentialist school of thought pays scant regard to the outcome and relies heavily for guidance on principles and duties. It prescribes that only actions that are good in themselves should be undertaken. Kant states: ‘so act that you can wish your action to be a universal rule for all’ (Sontag, 1984). What is interesting about duties is that one man’s duty is another man’s right. When a person chooses to exercise a right which does not correspond with other people’s interpretation of their duty, then a dilemma is created. Because Mrs Stoneman chooses to exercise her right of autonomy by allowing her son to die, this conflicts with the doctors’ duty to preserve life at all costs. If Mrs Stoncman and Daniel decided to go ahead with the treatment, thereby exercising Daniel’s right to life, or if the doctors decided to allow her to make the decision (for Daniel not to continue treatment) unhindered, exercising the prin ciple of respect for personal autonomy, then there would be no dilemma. As with the consequentalist view, it is difficult to justify either stance as neither the act of allowing the child to die, nor the act of challenging autonomy are in them selves good. The only conclusion that one can come to in a case like this is that there is no right answer. The focus of the problem is that Daniel is not seen as being capable of mak ing a non-treatment decision entirely by himself by virtue of the fact that he is a young child. It is unlikely that in his short life he has developed an adequate grasp of the differentiation between quality and quantity of life and therefore will not be able to weigh up whether it is worth his while undertaking treatment on the offchance that his life span will be increased. The onus is therefore on those who are charged with his care to make this decision for him, i.e. his mother and the doctors concerned with the case. As Grubh (1991) states, ‘what the incompetent would do if she or he could make the choice is simply a matter of speculation.’ This is because they have never been of an age to express an opinion on such matters and therefore all one can do is to make a decision with which one is comfortable. As Thoreau says, ‘the only obligation which I have a right to assume is to do at any time what 1 think right’ (Singer, 1990). In cases like Daniel’s this is perhaps the best guidance.
407 Downloaded from magonlinelibrary.com by 129.215.017.190 on January 15, 2019.
A child’s right to die: who should decide?
Wright (1988) asks a pertinent question: ‘In a culture of “freedom of choice” for the individual, can we choose death as wilfully as we might anything else? And if not able ourselves, should others not have the right to choose for us?’ I would suggest that Daniel and his mother should be the primary decision-makers, as long as they are fully informed of all poss ible outcomes. After all, Mrs Stoneman is the child’s mother and there can be no stronger motivation than love for making a right decision. Whether you agree with the above inter-
KEY POINTS • Sometimes the professional is not the best person to make a non-treatment decision. • Quality of life must be taken into account when deciding whether to treat or not to treat a child. • Preservation of life is not always in the patient’s best interests. • The best ethical actions will, on balance, provide the greatest overall benefit for all concerned. • Nurses should formulate their own ethical opinions and act on them.
pretation or not, nurses ‘should possess their own set of personal ethics and act on them’ (Ellis, 1992). For some nurses this may mean advocating on behalf of the mother’s right to make such a decision. For others, it may mean advocating that the child be given every chance to live, no mat ter how slim. Whatever the nurse’s opinion, he/she must act upon it and not allow others to take the moral lead.
Barnard C (1985) Good Life, Good Death: A Doctor’s Case for Euthanasia and Suicide. Peter Owen, London Beauchamp TL, Childress JF (1983) Principles of Biomedial Ethics. Oxford University Press, Ox ford Benjamin M, Curtis J (1986) Ethics in Nursing, 2nd edn. Oxford University Press, Oxford Ellis P (1992) Role of the nurse advocate. Br J Nurs 1(1): 40-3 Grubb A (1991) Treating handicapped babies. Dis patches (Newsletter of the Centre of Medical Law and Ethics, King’s College, London) 1(3): 6-7 Her Majesty’s Stationery Office (1989) An Introduc tion to the Children’s Act 1989. HMSO, London Rayment T, Fowler R (1992) Let Daniel die in peace: a mother’s tragedy. Doctors consider court action to keep boy alive. The Sunday Times, May 17th: Singer P (1990) Practical Ethics. Cambridge University Press, Cambridge Smith D, ed (1984) Respect and Care in Medical Ethics. University Press of America, London Sontag F (1984) Elements o f Philosophy. Charles Scribner and Sons, New York Wright S (1988) The power over death. Nurs Standard
2(11): 22
• Nurses should not take a ‘backseat’ when ethical decisions are being made.
Wringe C (1981) Children’s Rights: A Philosophical Study. Routledge & Kegan Paul, London Young A (1991) Law ana Professional Conduct in Nursing. Scutari Press, London
MAKE SURE OF YOUR COPIES OF BJN If you are having trouble obtaining a copy of British Journal of Nursing from your local newsagent then please get in touch with us immediately and we will ensure that your copy of BJN keeps on coming. Now post this form to: The Publisher BJN, Croxted Mews, 288 Croxted Road, London SE24 9DA. (Tel: 081-671 7521). NAME................................................................................................................................................................................. ADDRESS............................................................................................................................................................................
SPECIALTY......................................................................... TEL No NAME AND ADDRESS OF LOCAL NEWSAGENT.......................
408
British Journal of Nursing, 1992,Vol l,N o 8
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