Withholding consent to lifesaving treatment: three cases

CASE OF A

Although the refusal of Jehovah's Witnesses to agree to the use of blood products in treatment is not a new issue, it is interesting to note the legal process that we used in the case of A. A was a 10 month old baby at the time of referral. She had suddenly developed acute lymphoblastic leukaemia, for which she was immediately admitted. Because of her serious state she needed a transfusion of blood products within the first two days. A's parents, however, were Jehovah's Witnesses and could not consent to the transfusion because of their religious beliefs. A's condition was so serious that the doctors gave her the necessary treatment, without parental consent, using their responsibility and right as doctors to give lifesaving treatment in a crisis without the consent of the patient (or her parents). A's parents were willing for doctors to continue in this way, but the medical team was not prepared to do so because that would have meant that A would have to become ill to a life threatening degree each time before blood products could be given, and that would have greatly jeopardised the chance of the overall programme of treatment being successful. It was clear that no other concerns existed about the quality of care given by A's parents; they were devoted to A and inevitably extremely distressed by the dilemma they were in, but they were firm in their religious belief. Their lack of consent, however, would certainly have put A at risk of appreciable harm.

Legally, application for a care order (or interim care order) may be made if a child is thought to be at risk of appreciable harm (usually because of the care given), and indeed a care order may be made only if this ground is proved. Because no other concerns existed about the parenting care of A, we decided after consulting the social work department to apply for a specific issues order under section 8 of the Children Act. A specific issues order may be applied for when a specific question has arisen about the welfare of the child; it is not necessary to prove that appreciable harm would occur without such an order. While in this case it would clearly have been possible to prove that appreciable harm would have occurred without such an order, the only issue to be resolved was how to gain consent to treatment. Applying for a care order seemed inappropriate since it would have implied a failure of parenting. In addition, a care order would have resulted in the local authority sharing parental responsibility with the parents for the duration of the order. This seemed to us an unjustified and inappropriate intrusion into the family's life.

The applicant for the specific issues order was the local authority—that is, the social services department of the hospital's local authority. The social services department of the child's home authority was kept fully informed throughout the legal process. Since the matter was complex the case was heard in the High Court, with the parents being represented. The case was heard in May 1993.

CASE OF B

B was a 12 year old girl who had severe problems in walking and was wheelchair bound. She was admitted to the psychiatric unit of our hospital during an illness which had already lasted more than a year; she had previously spent several months in a psychiatric unit near her home. During her illness she had had many medical investigations for an organic cause of her symptoms. The shared professional view was that she had a conversion disorder. Although no history of specific trauma was discovered, complicated relationships existed in her family. B's natural parents, stepfather, and maternal grandmother all participated in her care and in her treatment. Although B showed anxiety and distress at times, she did not present as clincially depressed.

As is common in such cases, B was strongly resistant to the view that the cause of her illness was psychological, and her parents also had difficulty in accepting this diagnosis initially. The team treating B believed that it was important to have a neurological opinion to help the family not to fear the diagnosis and to reassure both the family and itself that no underlying organic disease existed. On examination the neurologist agreed that no evidence of an organic disease existed. However, the family asked for a second neurological opinion. When the second neurologist tried to examine B she was non-compliant, and he was unable to give a definitive opinion without her having magnetic resonance imaging. Her parents and the team agreed that this should be done, but B refused consent. She consistently expressed several fears about the imaging procedure and anxieties about its outcome and sequelae, regardless of whether it found an organic cause. Efforts (of family members as well as professionals) over time to help her to accept the investigation proved unsuccessful. On three occasions appointments were booked for the imaging scan, with attempts to meet all B's conditions, but on each occasion B refused the investigation.

This presented a dilemma to the team. The investigation was not medically urgent, and, indeed, the team members held conflicting views about the need for B to have it. The doctors believed that the investigation was most unlikely to show an underlying organic disease; but confirmation of the absence of such disease might help B and her family to accept with more commitment that the cause was psychological. On the other hand, if the scan did show an organic disease, the disease would be of a serious nature.

After much deliberation—including meetings with the neurologists and the community agencies from B's home authority and consultation with the legal departments of the hospital, the home local authority, and the local authority in which the hospital is situated—the team decided that the imaging investigation could not be done without an application to the courts. The team had been advised that as the merits of B having the investigation were not clearly medically overwhelming it would not be appropriate to force B to undergo it against her will without recourse to the courts. That advice was based both on the concern about the psychological effects on a young person forced to undergo such an investigation against her will and on concern about hospital staff being accused of committing an assault by forcing her to have the investigation. The team's general view was that B was Gillick competent and that her judgment was not impaired cognitively or by any serious psychiatric disturbance; rather, her judgment was affected by her anxieties about the imaging investigation and its possible results. None the less, the team was uncertain how the courts would define Gillick competence.

CASE OF C

C was a 16 year old young woman with chronic pain, especially in her abdominal area. Like B, she had had symptoms for over a year, with the onset following an appendicectomy. In 1991 depression had been diagnosed and she was admitted to her local adolescent unit for two months, but she had made no apparent improvement. In the summer of 1992 she was admitted to our psychiatric unit. Although she had a serious eating disorder, anorexia nervosa was not diagnosed; she was, however, assessed as clinically depressed, and she received psychotropic drugs and psychotherapy. No organic cause had been found for her chronic pain. Although neither she nor her parents had given any history of specific trauma, indicators in C's presentation led the team to decide that she had probably experienced some kind of trauma, although probably not in her immediate family.

She was treated with various drugs and psychotherapy and took part in several therapeutic groups and activities on the ward. During the first few months she showed some improvement, but during a prolonged Christmas break at home she deteriorated; on her return to the unit nasogastric feeding was started to increase her weight. Because of C's age and the length of her stay at the unit it was becoming clear that she would have to move to a longer stay unit for adolescents. C then refused to eat at all and said that she wished to die. The team thought that these actions were triggered by her proposed departure from the unit. Her refusal to eat and drink would probably lead to her being appreciably harmed and was indeed potentially life threatening. C's parents understandably were desperately anxious and wanted their daughter to be fed and treated.

The team had meetings with the social services department and local health professionals from C's home area. It was clear that C could be fed only by force, with a nasogastric tube. Nursing staff would have to hold her hands down as otherwise she would remove the tube; doing this without C's consent, however, could constitute an assault unless the issue was addressed in court. The team discussed which kind of court order to seek. Because of C's age and because she seemed to be Gillick competent it did not seem appropriate simply to override her refusal, despite the judgment of Re W.3 Some psychiatrists in other hospitals believed that an order should have been made under the Mental Health Act—in other words, C should have been sectioned. The hospital's social work department, however, believed that the Children Act should be used since this would probably lead to fewer long term disadvantageous sequelae for C than would an order under the Mental Health Act. Consequently, in April 1993 the hospital applied to the High Court under the inherent jurisdiction for consent to treat C against her will. Although the hospital made the application, in other similar situations it may be more appropriate for the local authority to do so as a minor would probably be appreciably harmed if an order was not made.

IMPLICATIONS OF CASE OF A

Through her judgment in the case of A—namely, that a child's right to lifesaving treatment is paramount and must be considered before the religious beliefs of his or her parents—Mrs Justice Booth indicated the legal route that professionals should take in such cases. She said that such cases should, whenever possible, be determined by a High Court judge. In view of the likely urgency, however, a district judge could always give necessary directions for a speedy hearing. The Children Act obviously allows a far better route for achieving this than did the previous legislation, which required either a care order or wardship, both of which could substantially affect the parents' responsibility and which could be perceived by the parents as questioning their parenting in a more general way—even when that was not the intention or view of the professionals or the courts. The judgment that a specific issues order is the most appropriate way to deal with situations in which the withholding of consent is the sole point of disagreement between a family and professionals is satisfactory to all concerned, including Jehovah's Witnesses.

Despite the judgment in A's case, we have reservations about using a specific issues order in cases in which we believe that the child should be independently represented. Making a specific issue order does not need the involvement of the official solicitor or independent representation of the child. In A's case we did not think these factors mattered. A was certainly not capable of instructing a solicitor. Recently a similar issue seemed likely to arise about the possible need for blood products after surgery in a 13 year old boy. The boy was a Jehovah's Witness and held strong views on transfusion. Had a legal process been necessary we would certainly have wanted the official solicitor to represent the boy and would also have considered his having legal representation independently of his parents, whether the application had been for a specific issue order or for the inherent jurisdiction of the High Court. In the event no application to the courts was necessary as the doctor treating the boy found a way of treating him that precluded the need for a transfusion of blood products.

Although it would certainly be possible in cases such as A's for the health authority to apply for an order, we believe that it is most appropriate for the local authority to do so since the child would probably be appreciably harmed if treatment was not given. Moreover, the local authority has the statutory responsibility for investigating and acting in cases in which a child may be suspected of being at risk of appreciable harm. In the case of A we decided that the hospital's local authority should start the proceedings because of the urgent need for action (delays were possible if professionals from the child's home authority had to be briefed).

IMPLICATIONS OF CASE OF B

In the initial hearing in April 1993 much of the discussion in court hinged on whether B was competent or not competent. The disagreement among the psychiatrists giving opinions about whether she was Gillick competent may reflect an uncertainty about how to define Gillick competence—it may indeed need to be interpreted legally rather than clinically. Both the hospital and the official solicitor hoped that the judge would give guidance on how to deal with future cases that were medically non-urgent and in which a minor was neither Gillick competent nor a ward of court. In particular, they hoped that they might be guided on how to avoid seeking the leave of the court to proceed with the treatment. However, Sir Stephen Brown did not do this; he said that in future cases application to the courts should be made so that each case could be decided on its merits. His decision on whether B was competent seemed to be based on the same grounds as Lord Donaldson had used in Re W3 and which Devereux et al have argued are illogical6—that is, disagreement denotes that the child is incompetent, and agreement denotes that he or she is not competent.

We do not know whether courts will continue to judge that minors who withhold consent to investigations or treatment that is agreed by their parents and advocated by professionals are not Gillick competent. If they do, the implication is that a minor can be Gillick competent only if he or she gives consent, not if he or she refuses it, even in non-urgent situations. This interpretation is in line with the judgments already made by Lord Donaldson in Re R (a minor) in2 and in Re W (a minor)3 and in the judgment in South Glamorgan (County Council v Ward B).4 In the case of Re R the minor was judged to be not Gillick competent because of her psychiatric illness and so could not give a valid refusal. in the case of Re W the girl had anorexia nervosa and was refusing treatment, and her condition was life threatening; Lord Donaldson judged that consent to treatment by anyone with the right to give it, either the minor or those with parental responsibility, outweighed refusal by any other person. In the South Glamorgan case a 15 year old girl who was living in an extremely reclusive manner but was assessed as not suffering from a psychiatric, psychotic, or personality disorder was made the subject of an interim care order, with directions under section 38(6) for her to receive inpatient psychiatric assessment and treatment. As she still refused consent her wishes were eventually overruled by powers under the inherent jurisdiction of the High Court.

Other judgments have overruled the views of adults who were refusing consent to treatment in situations in which a likely or certain risk to life existed if treatment was not given.9 In one case a pregnant woman refused consent to a caesarean section; the High Court authorised the section to be done. In another case a 20 year old woman refused a blood transfusion after a road traffic accident; the judge held that her refusal was not properly informed because of her fluctuating medical condition and that she was unduly influenced by her mother, who was a Jehovah's Witness. While the first case was brought to court under the Children Act, the second was not.

IMPLICATIONS OF CASE OF C

The judgment in the case of C followed the judgments made in the cases of Re R2 and Re W3; treatment and feeding or hydrating, or both, should occur even if C opposed it. The courts, therefore, will apparently not permit a minor to bring about his or her own death by refusing treatment. At C's final hearing the hospital's request for C to be made a ward of court was also granted, with care and control given to her parents.