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Ethics and law

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G197 MANAGEMENT OF CONDITIONS DIAGNOSED ANTENATALLY WITH A POOR PROGNOSIS: PRE- AND POSTNATAL ETHICAL AND LEGAL DIFFICULTIES

P. de Halpert, B. Yuksel. Barnet and Chase Farm Hospitals NHS Trust, Department of Paediatrics, The Ridgeway, Enfield, London EN2 8JL

Introduction: Current standards of antenatal investigation allow a large range of foetal conditions to be diagnosed. Coupled with genetic testing from amniocentesis or chorionic villous sampling, accurate diagnoses and prognoses can be given to parents from an early gestation. We would like to present two children and their families who were diagnosed antenatally with serious congenital abnormalities.

Objective: To highlight the ethical and emotional problems faced by these families and by medical staff, and assess ways of helping parents make informed choices.

Methods: The cases of two children, who had antenatally diagnosed congenital abnormalities, and were admitted to the special care baby unit, are reviewed.

Patients: The first infant was antenatally diagnosed with holoprosencephaly and cleft lip and palate. His mother had had a previous pregnancy terminated for the same condition. She decided, after counselling, that she could not terminate this pregnancy. He was born in good condition at term and his mother, after initially refusing resuscitation or medical intervention, then wanted full medical intervention. However, she found it emotionally difficult to cope with him. The second infant was antenatally diagnosed with Roberts syndrome. The parents decided against termination for religious reasons. She was born in good condition and survived; however, the parents did not wish her to have any medical intervention including resuscitation.

Result: Two families were offered termination of pregnancy for congenital abnormalities, they both refused. One family wanted full intervention for the child, the other family wanted none. Both, understandably, found it emotionally difficult.

Conclusion: These cases illustrate the different ethical and emotional difficulties for the parents. Methods of supporting families faced with these difficult choices must be ensured to be in place.

G198 MEDICAL MANSLAUGHTER OR SYSTEMS FAILURE

A. C. Elias-Jones. University Hospitals of Leicester NHS Trust

Aim: To examine the increasing trend for doctors to be charged with manslaughter for fatal medical mistakes, highlighted by the recent conviction of a junior registrar working at the Queen’s Medical Centre, and the reasons for this, and an examination of relevant case law.

Index Case: Dr Feda Mulhem, a haematology registrar for 3 days, erroneously injected vincristine intrathecally into a 19 year old male with acute lymphoblastic leukaemia. The patient died as a result 4 weeks later. Fourteen previous identical mistakes have occurred.

Past Manslaughter Prosecutions: From 1867–1989, seven doctors were prosecuted. From 1990, 23 doctors were prosecuted. Ferner’s study1 showed that 15 of 21 doctors were from an ethnic origin, and had double the conviction rate.

Conclusions: Despite fatal mistakes occurring, the NHS repeatedly fails to learn to prevent the same mistakes. When a fatality occurs, the doctor is more likely to be prosecuted if from an ethnic origin, and is a junior grade.

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G199 PARENTS’ REACTION TO DISCUSSION OF WITHDRAWAL OF LIFE SUPPORT FOR SEVERELY ASPHYXIATED BABIES

R. J. Tozer1, N. Aladangady1,2. 1Neonatal Unit, Homerton University Hospital, London; 2Bart’s and The London Queen Mary’s School of Medicine, London

Introduction: Severe birth asphyxia is associated with poor neurodevelopmental outcome and withdrawal of intensive care is appropriate in certain situations. We report reactions of the parents’ of two severely asphyxiated infants to withdrawal of intensive care.

Case 1: A male infant born at 41 weeks gestation by emergency caesarean section because of fetal bradycardia. Uterine rupture was found at operation with the baby in the abdominal cavity. His condition was very poor at birth, APGAR scores 11, 35, 310; cord pH was 6.6. Heart rate improved rapidly with ventilation but he failed to develop spontaneous respiration. He was grossly hypotonic and developed seizures within 2 h, cerebral function monitoring showed a flat trace. Withdrawal was recommended but initially refused by his black, African, Catholic parents on religious grounds. After discussions with three neonatologists they agreed to withdrawal of intensive care at 1 week of age, as they felt that gave him a chance of recovery. He died shortly after extubation.

Case 2: A male infant was born by emergency caesarean section at term because of fetal bradycardia. His condition was very poor at birth, APGAR scores 01, 05, 010; the earliest pH was 6.7. He showed minimal respiratory effort and developed clinical seizures. Cerebral function monitoring was severely abnormal and electroencephalogram isoelectic. His white, British, Anglican parents asked that intensive care be withdrawn immediately to spare him any further suffering. He died shortly after extubation. Both infants received total body cooling as part of a randomised controlled trial (TOBY). Both sets of parents subsequently expressed gratitude to medical and nursing staff.

Conclusion: Parents’ opinions about withdrawal of intensive care are known to be influenced by many factors, including culture and religion. It may be appropriate to continue intensive care for some time to allow parents to accept the inevitability of death rather than pressuring them to agree or resorting to court action. A study is required to examine ways in which allowing parents control over some aspects of the process, including the timescale, may improve their lasting feelings about their loss.

G200 YOUNG ADULTS MASQUERADING AS CHILDREN: A FORM OF FACTITIOUS ILLNESS

V. Ho, L. Jones, V. F. Larcher. Departments of Child Health and Child and Adolescent Mental Health, Queen Elizabeth Children’s Services, Royal London Hospital, London E1 1BB

Introduction: False reporting or induction of illness by adults is well recognised but false reporting of age is rare. We report two young adults who masqueraded as adolescents and the difficulties their management posed.

Case 1: Admitted in an apparent post-ictal state. She claimed to be 14, epileptic, and spoke only German. Examination revealed an obese post-pubertal female with scars suggesting deliberate self harm. Investigations including toxicology were unremarkable except for presence of anti-convulsants. During admission she showed mood swings, child like behaviour, feigned fits, and intermittent hemiparesis, but refused further investigations. She was later found to understand three languages and had advanced computer skills. Her attempts to abscond and conduct complicated her management. Letters found by staff revealed her true identity as a 19 year old with longstanding history of personality disorder. She was escorted to Germany after >2 weeks’ admission.

Case 2: Admitted with pain and nausea having been found sleeping rough. Claimed to be 14 and subject of physical and sexual abuse by stepfather; police protection order obtained. Examination revealed a post-pubertal female with scars suggesting deliberate self harm and unexplained abdominal scar; all investigations normal but made multiple attempts to abscond threatened and attempted suicide on ward. Behaviour increasingly disturbed requiring specialist nursing and referral to child and adolescent mental health service unit. After admission found to be 19 and giving false identity.

Conclusion: It was difficult to establish true age, identity, or motive for deception in these patients. Behaviour of both required use of scarce resources and produced potential harm to others on children’s wards. We suggest the public interest in reporting these cases overrides issues of confidentiality.

G201 ANTENATAL AIDS AND CONGENITAL TUBERCULOSIS. DAD UNAWARE. HOW DO YOU COPE?

C. Abbatuan, J. Katumba-Lunyenya, P. Latham, V. Joss. Department of Paediatrics, NICU, Milton Keynes Hospital, Milton Keynes

We present a case of congenital tuberculosis associated with ethical problems. The mother was from sub-Saharan Africa. She tested HIV positive on booking at 23 weeks of gestation. Before investigation for antiretroviral therapy, she developed a fever at 24+4 weeks. She was started on antiretroviral therapy and antibiotics. All microbiological tests were negative. There was no evidence of tuberculosis. Her urine was examined and cultured for Mycobacteria and sent for PCR. She delivered vaginally at 25+4 weeks of gestation. She was empirically started on antituberculous therapy. The father was not aware of mother’s HIV status and she was not yet ready to tell him.

The female infant was in good condition except for severe bilateral intraventricular haemorrhages and a left haemorrhagic venous infarct. We started triple antiretroviral therapy and antibiotics. The situation, other than the HIV status, was discussed with her parents. Mother was persuaded to inform her husband. She weaned to nasal continuous positive airway pressure in air by 24 h but collapsed on day 6 due to a large duct needing reventilation. The duct closed medically and the infant extubated into air. At 18 days she became unwell and was reintubated. She started second line antibiotics and liposomal amphotericin for skin lesion Aspergillus fumigatus and urinary yeasts. She was pyrexial with rising C-reactive protein. Tracheal secretions were positive for Mycobacteria. Antituberculous therapy was commenced in vain. Intensive care was withdrawn after discussion with the family. Dad, who was now aware of mother’s HIV status, tested negative. Mother’s urine grew Mycobacteria days after the baby’s death.

How do you manage the family when only one parent is fully aware of the situation? How do you protect staff, patients, the family, and other parents from infection without revelation to Dad? What are the rights of the infant if an ill mother declines HIV testing. How do you manage the inevitable media interest?

G202 WHAT IS THE ETHICAL BASIS OF THE RELATIONSHIP BETWEEN THE DOCTOR AND THE PARENTS AND IS THERE A DUTY OF CARE OWED TO ANYONE OTHER THAN THE PATIENT?

B. Leigh.

The law, like medicine, has become increasingly perplexed in recent years by the paradox underlying the basis of a lot of paediatric treatment. In general the autonomy of the patient has become more emphatically recognised over the past 30 years and in paediatric practice this is reflected in the recognition of the Gillick competent child, but the neonate is no closer to practical autonomy and never will be.

Parental autonomy exists only for the purpose of advancing the wellbeing of the child and the more clearly society demands action from paediatricians confronted by evidence of non-accidental injury, emotional abuse, or factitious or induced illness, the more clear it is that the only person to whom a doctor owes an obligation is the child. These problems apply to the sharing of information because statutory restrictions have supplemented the old common law rules governing the sharing of information. Yet it is also clearer than ever that the doctor intervenes briefly in the life of the patient and if the intervention is to make sense it must complement the efforts of the long term carer.

This lecture will review recent developments in case law in which the courts have grappled with these problems.

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