i

Ethics in paediatric intensive care

Mark Harvey

Mark Harvey RGN, RSCN, Staff Nurse, Paediatric Intensive Care Unit, Addenbrookes Hospital. Cambridge CB2 2QQ, UK

(Reprint requests to MH) Manuscript accepted 25 November1994

Although many nurses may not consciously acknowledge the fact, ethical considerations are a vital part of nursing practice. The concept and definition of ethics, and how these may be applied to Paediatric Intensive Care in particular are considered here. Suggested frameworks for addressing ethical dilemmas are examined, as well as the possible conflict between ethics and the law.

V i i ! i ~ ! i ! i ~liii ®

INTRODUCTION

Ethics has long been a topic explored in rela- tion to medicine and research, but appears to have developed more recently in its application to nursing. The majority of nurses did not con- sciously examine the ethical implications of their work until these were highlighted by the Standards o f Care Project, initiated by the Royal College of Nursing, and the production of the first code o f Professional Conduct by the United Kingdom Central Council for Nursing, Midwifery and Health Visiting (UKCC), both in the early 1980s (Burr 1988).

E T H I C S - D E F I N I T I O N A N D P R I N C I P L E S

One definition of ethics is:

The systematic study of the nature of value concepts .. . . and the general principles which justify in applying them to anything; also called 'Moral philosophy'. (Encyclopedia Britannica 1967)

Although rather dry and applicable to what is called philosophical ethics, this definition introduces value concepts, or judgements, an area that will be explored throughout this paper; and also equates ethics with morals. The word ethic, from the Greek 'ethos' for

character, and morals, from the Latin 'mores' for customs, are used with much the same meaning.

Philosophical ethics, by nature broken up into various schools of thought, is often of little help in the solving of day-to-day problems. The everyday task of making moral decisions is referred to as ' common sense ethics', which derives from comparative ethics - defining right and wrong, good and evil; examining the rules and ideals o f society.

Brykczyhska (1989) observes that moral decision-making within a society is influenced by a variety o f philosophies o f both religious (theological) and ethical (deontological) base, however little knowledge of their actual origin or reasoning we have. She believes that, if explored, each nurse's decisions will show com- mitment to a particular philosophy, however modified, with moral reasoning based upon this.

Many a nurse will say at this point that she is not consciously aware of having any partic- ular philosophy.., however, with a bit of help ... most individuals can identify the major source o f their moral reasoning. (Brykcz'Cnska 1989 p. 2)

Obviously ethics is being looked at from a nursing perspective here, but the term 'nurse' could be replaced with 'individual' for general application. Brykczyhska further observes that a mix o f philosophies is no bad thing, and gener- ally the aim of all is the achievement o f 'that which is good'.

Ethics is recognised to have four principles - those of beneficence, non-maleficence, auton- omy and justice (Luce 1992, Davis 1984, Grundstein-Amado 1992).

Beneficence is the principle that the patient/child/person will be positively helped, non-maleficence the principle that causing harm will be avoided. These are the two fore- most doctrines of most guidelines concerning both medical ethics, such as the Hippocratic Oath and nursing ethical codes such as the Code of Professional Conduct (UKCC).

Autonomy is personal freedom, 'right of self-government'. It is the right of the patients to have a say in their treatment, to determine its course and to voice their opinions. This prin- ciple is of particular interest in paediatric nurs- ing where children may be deemed by lack of maturity, age group or, in intensive care partic- ularly, degree of illness, to be unable to com- prehend their situation fully and so unable to make an informed choice regarding their care. Therefore the field of advocacy is relevant, where someone considered more able to make such decisions - usually the parents - acts on behalf o f the child. Obviously the nurse has an

Intensive and Critical Care Nursing (1995) I, 36-39 © 1995 Pearson Professional Ltd

Ethics in paecliatric intensive care 37

ethical duty to act as the child's advocate where appropriate.

The principle of justice, or social justice, is that of fairness, equality and non-discrimination. Luce (1992) equates this with the allocation of services to patients most likely to benefit from them, especially where there is a shortage of these services. He illustrates this with the exam- ple o f withholding and withdrawal of life sup- port from patients in intensive care units in the USA. Darbyshire (1989) brings it down to a more personal level, where nurses are faced with decisions of how and where to make best use o f the resources of nursing time.

Ethics in nursing

Nurses make ethical decisions every day as they prioritise their time, make patients assignments, and interact with other health care professionals, parents and families. (Meidema 1991 p. 20)

As Brykczyhska (1989, p. 8) points out; 'some nurses see very few ethical problems and some see their whole practice effectively based on ethical principles'. This latter view would appear to be held by Curtin (1978) who states that 'nursing is vitally concerned with ethics because nursing is essentially a moral art', meaning that the principles of ethics are the basis o f nursing; that its primary aim is the achievement of that which is good.

Codes, standards and nursing philosophies all offer assistance to nurses in dealing with eth- ical decisions, used in tandem with their own method of moral reasoning. To go against many of these guidelines would be also to go against natural law, i.e. widely held concepts o f right and wrong, o f human rights.

So how can nurses apply the principles o f ethics to their practice? Beneficence equates with good practice and a high standard of care. It is the essential principle, in that to abide by it necessitates abiding by the other principles. Non-maleficence suggests that where there is apparent conflict, e.g. correct and effective treatment o f an ill child dictates that it under- goes an unpleasant and painful procedure, this is minimised to the greatest degree possible with thorough preparation and assessment.

Autonomy poses some particular problems for paediatric nurses, especially in the care of older children and adolescents. These children have the same basic human rights as an adult, and to impose treatment upon them without their consent would be unpleasant. Yet legally their ability to give consent is not recognised until they reach 16 years of age, and their par- ents may argue that they have the right to con- sent on their child's behalf (Charles-Edwards

199l). The legal precedent that is applicable in such a situation is the Gillick case (1985), when the House of Lords decreed that the Court should ascertain the wishes and feelings of the child concerned (considered in the light of his age and understanding), so it is accepted that it is correct to consider the patient's wishes, yet it still remains to determine whether or not he/ she can be considered competent to give or withhold consent. Charles-Edwards (1991) believes that:

... someone with an understanding of the nature, purpose and consequences of treat- ment is competent.

Competence is obviously difficult to define, and there are only guiding principles to help. For example, the President's Commission in the USA (1983) suggested three points which demonstrate the ability to make decisions:

Possession of a set of values and goals; the ability to communicate and understand information; the ability to deliberate and reason about one's choices.

If the patient's views are discounted, or con- fidentiality not respected, the patient is denied autonomy. There is rarely an easy answer, as all parties involved have a personal perspective, and as Atkinson (1989, p. 48) emphasises:

... decisions must never be made unilaterally by those who do not have to live with the consequences.

Parents can normally be expected to have their child's best interests at heart, and also pos- sess certain moral and legal rights. Nurses' duties must include honouring those rights, for example by involving parents in their child's care as much as possible and keeping them fully informed of the situation. However, as Lord Fraser pointed out in the Gillick Case:

Parental rights to control a child do not exist for the benef t of the parents. They exist for the benefit of the child...

Ideally, possible conflicts would be thor- oughly discussed between all concerned parties and resolved as amicably as possible. If, how'- ever, this is not achievable then at least the child/adolescent involved has a recognised right to have the case heard in court and, if deemed competent, to have his/her decision supported by law.

The final ethical principle is that of justice, which as previously stated, is usually spoken of in relation to available resources. These resources may be bed spaces in a specialist unit; equipment and facilities to provide fully for a child's care and developmental needs; or suit- ably trained nurses, for example. The principle

38 Intensive and Critical Care Nursing

is that each individual is entitled to the best care available, without discrimination.

Issues such as over-zealous or inappropriate care aside, there are ethical decisions involved in the allocation of funds and resources at all levels, from Central Government through to the point at which care is delivered•

ETHICS IN PAEDIATRIC I N T E N S I V E CARE

Curtin (1978) believes that the intensity of moral commitment is 'directly derivative of the degree of vulnerability o f the patient' . Atkinson (1989) states that ethical dilemmas are 'often highlighted' in intensive care. Presumably this highlighting comes about as a result of Curtin's principle - that is to say the dilemmas are gen- erally the same as those in other areas, although there are certain unique ones, but may become more obvious in a 'life and death' situation.

Nurses must be expected to be able to par- ticipate in the decision-making process in intensive care, so it is reasonable to expect them to be prepared for this in the same way as it is reasonable to expect them to be competent in the specialist practical skills required•

The essence o f critical care nursing lies not in special environments or amid special equipment but in the nurses decision-mak- ing process and willingness to act on deci- sions made. (Hudak et al 1986, p. 3)

A subject frequently brought up in relation to intensive care is the use o f high technology in life support, and the issue of the discontinu- ation of artificial ventilation. Davis (1984) believes that such 'life support ' in children should involve:

... restoration of the normal dynamic of growth and development towards maturity

- not the prolongation of a Peter Pan exis- tence!

This would appear to be an aim with a sound ethical base.

The death of a patient is a stressful situation and this may be compounded by unresolved ethical dilemmas over prolonging life (Atkinson 1989). Whyte (1989) questions whether every effort be made to save every human life. Obviously the answer is that each situation should be judged on individual merit.

Organ donation and transplantation have raised ethical issues which have also entered the public arena more than most. There has become, at times, an emotive debate which has centred on the definition of brain-stem death and the situation in which a patient diagnosed

as such is supported technologically prior to surgery. Unfortunately, the issue is sometimes clouded in the media by the introduction of the separate topic of prolonged life support in comatose patients. Brain stem death is defined by very precise and exacting criteria. The ethi- cal dilemma often centres on the approach to the parents for consent to donation, coming as it often does before the relationship between staff and parents has had time to develop. What is important is that each case is treated individu- ally, there is communication and continuity of information between staff, and that the nurse involved has an unambiguous philosophy on the issue - meaning that her method of moral reasoning applied in such situations is consis- tent, not that she necessarily views all transplan- tation as right or wrong.

Critical care nursing is accepted as having its particular stressors, and much research has investigated phenomena such as 'burn out ' amongst nurses in these areas. Research in the USA has demonstrated that critical care nurses may be emotionally detached in comparison with their peers in other areas; and it has been suggested that this is a coping mechanism to buffer against the 'perceptual bombardment ' they experience (Hudar 1986). This detach- ment may affect the ethical decision-making o f the nurses, which may not be detrimental i f it helps them to view the situation objectively, but gives cause for concern if it hinders the for- mation of a relationship with a child and its parents. It is also worth bearing in mind Carty's (1982, p.115) premise that 'professional nurs- ing . . , is seen by this author as the most signifi- cant variable in the care of children in the intensive care unit'•

THE ETHICAL D E C I S I O N - M A K I N G PROCESS

The process by which a decision is reached on an ethical issue is basically that which is applied to any problem - analysis of available choices followed by selection of the most beneficial or

desirable. Pellegrino (1981) suggested a model for

decision-making in clinical ethics in which three questions are asked in sequence:

• What is the problem? • What can be done? • What should be done?

Taking a slightly different approach, Bryk- czyhska (1989, p.8) defines the steps in the eth-

ical process as:

1. Gathering information.

Ethics in paediatric i n t e n s i v e care 39

2. Iden t i fy ing the central characters ( 'e thical

agents ' ) and ob t a in ing the i r input .

3. D r a w i n g up a list o f opt ions .

4. D e c i d i n g o n a course o f ac t ion (bear ing in

m i n d legal aspects, local pol icy etc).

5. I m p l e m e n t i n g the decision.

As M i e d e m a (1991, p.20) observes, this fits

easily in to the f r amework o f the nurs ing process:

1. Iden t i fy ing the p rob l em.

2. Assessment - ob t a in ing the facts

(medical and social)

- ident i fy ing the

pa t i en t s / advoca tes

wishes.

3. P l a n n i n g - d e t e r m i n i n g goals o f

t r e a t m e n t

- ident i fy ing decis ion

makers

- l isting opt ions.

4. Imp lemen ta t ion - Dec id ing o n a course o f

act ion and carrying it out.

5. Eva lua t ion - O n g o i n g .

Perhaps the d i scomfor t felt by some nurses

at tackl ing ethical issues cou ld be eased by v i e w -

ing the d e c i s i o n - m a k i n g process w i t h this

familiar f r a m e w o r k in mind .

NURSING A N D MEDICAL ETHICS A N D THE LAW

T h e legal impl ica t ions o f a cons idered course o f

ac t ion mus t be t aken in to account , as mus t

policies w h i c h g o v e r n pract ice locally. Ethical

m o t i v a t i o n is no t acceptable jus t i f ica t ion for

illegal behav iour , h o w e v e r wel l r easoned it

m ay be.

Law and ethics m ay confl ict w i t h one

a n o t h e r w h e r e i n t e r v e n t i o n by law overr ides

the consen t or w i t h h o l d i n g o f consen t o f a

pa t i en t or the advoca t e /gua rd i an , for example

the g iv ing o f a b l o o d t ransfusion to the chi ld o f

a J e h o v a h ' s Witness , or a l lowing a chi ld to c o n -

sent to t r e a t m e n t against its parents ' wishes.

Such si tuations mus t always appear, f r om an

ethical po in t o f v iew, to have a partly unsatis-

factory ending . T h e law is, h o w e v e r , based o n

the gu id ing pr inciple tha t the child 's best in te r -

ests are p a r a m o u n t .

C O N C L U S I O N

Ethical cons idera t ions are an integral par t o f

nursing. T h e n e e d to h e i g h t e n nurses ' aware-

ness o f the subject and the part it plays in the i r

practices has b e e n emphasised. Suggested m e t h -

ods o f d e c i s i o n - m a k i n g may ease the process,

bu t n o t necessarily p rov ide any answers.

REFERENCES

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Brykczyfiska G M (ed) 1989 Ethics in Paediatric Nursing, Chapman and Hall, London

Burr S 1988 Foreword. In: Brykcz%ska G M (ed) 1989. Ethics in Paediatric Nursing, Chapman and Hall, London

Carnevale F A 1991 as cited by Noble 1991 Carry R M 1982 High technology and humanity in

nursing intensive care. Finding a balance. Intensive Care Nursing 7:23-27

Charles-Edwards I 1991 Who decides? Paediatric Nursing 3 (10): 6-8

Curtin L L 1989 Nursing ethics: theories and pragmatics. Nursing Forum 17 (1): 4-11, cited in: Brykczyflska G M (ed) 1989

Darbyshire P 1989 Ethical issues in the care of t h e

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Meadow R (ed) Recent advances in paediatrics No. 7. Churchill Livingstone, Edinburgh

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Miedema F 1991 A practical approach to ethical decisions. American Journal of Nursing 91 (2): 20-25

Noble M A (ed) 1991 The ICU environment - directions for nursing. Reston, Virginia

Pefligrino E D, Thomasma D C 1981 A philosophical basis of medical practice: toward a philosophy and ethic of the healing professions. Oxford University Press, New York. Cited in: Carnevale F A 1991 High technology and humanity in intensive care. Finding a balance. Intensive Care Nursing 7:23-27

Presidents; Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioural Research 1983 Deciding to forego life-sustaining treatment. The Commission, Washington

Royal College of Nursing of the United Kingdom 1990 Standards of care for paediatric nursing. 8cutari, Harrow

United Kingdom Central Council for Nursing, Midwifery and Health Visiting 1992 Code of Professional Conduct 3rd ed, London

Whyte D A 1989 Ethics in neonatal nursing. In: Brykczyhska G M 1989. Ethics in Paediatric Nursing. Chapman and Hall, London