Enquiries from children’s surgeons concerning clinical law in an English hospital

Parental responsibility

Enquiries: Who has parental responsibility at birth? Can a pregnant mother provide consent, in advance, for the surgical treatment of  her forthcoming child? What if she is incapacitated at birth? Can parental responsibility be shared? What if the baby’s mother is a child herself? Does birth registration confer parental responsibility? Who has parental responsibility for a baby born to a surrogate mother?

Whilst the foetus is in utero it has no legal personality; it is an indivisible part of the mother’s body. When the mother provides consent for antenatal treatment; she is consenting for herself, an entity which includes her foetus. Until the foetus is separated from the mother, since it has no legal personality, she cannot have parental responsibility for the unborn child, and as such cannot provide advance consent for treatment envisaged postnatally. Once the baby is born, now separate from the mother, she automatically has parental responsibility and can provide consent for the child’s treatment.

If at that stage mother is incapacitated, unable to provide consent, if the married father is available, he can provide consent for surgical treatment of the newborn. This is because by dint of being married to mother at the time of birth, he has automatically acquired parental responsibility for the baby. If father is not available, and mother is incapacitated, surgical treatment may and should be provided without consent, provided it is necessary to preserve life or limb.

In the circumstances of a mother and father married prior to the baby’s birth, both acquire parental responsibility at the birth…registration of the birth plays no part in that acquisition. But if the father is unmarried at the time of the birth, he does not automatically acquire PR at birth, and must register his name on the birth certificate to acquire parental responsibility for the child.

If the mother of a newborn is a child herself, this is likely to have been noted when she booked her pregnancy; depending on her age, liaison midwives may have contacted the local authority, and a safeguarding process is foreseeable. Irrespective of the chil-mother’s age, she will have parental responsibility for the newborn. However, it is very likely that the maternal grandmother will have been approached to share parental responsibility. Depending on the facts of the case, an order of the court may be put in place to protect the newborn (and in some circumstances the baby’s mother). Mother & baby fostering is not uncommon. If the newborn requires surgery, his mother’s competence to deal with the disclosure required prior to consent must be tested. If she is competent to make this particular decision, then she is entitled to do so; otherwise, the maternal grandmother is the next most likely person to provide consent, if she is sharing parental responsibility.

In the case of surrogacy, the woman who delivers the baby acquires parental responsibility at birth. Whether or not she transfers parental responsibility to the intended mother; or whether the intended mother fulfils her promise to take the baby, remains to be seen. The law surrounding who will eventually be registered as the surrogate child’s parents can be of ‘Byzantine complexity.’ Advice should be sought.

Refusing life-saving treatment

Enquiries: How should I deal with parents refusing blood transfusion for their child? What should be done when a competent child refuses treatment? What to do when a family is refusing definitive treatment for Hirschsprung’s disease in an infant?

Parents, often Jehovah’s Witnesses, may refuse blood either on behalf of an incompetent child, or in the support of an older, competent child. If the child is incompetent, then the issue is one primarily of parental responsibility, and assuming that the parents are steadfast in their refusal, a Family Court will be required to decide where the child’s interests lie. This is usually achieved on the basis of a Specific Issue Order, provided by the Children Act 1989, allowing the state to assume the fragment of parental responsibility which is sufficient to provide consent for transfusion; but nothing more.

In cases where the child’s life is threatened by refusal, and he or she  is competent, or old enough to be presumed capacitous, the legal process will scrutinise the child’s (or young person’s) competence or capacity, to refuse treatments and to endure the risks associated with refusal. In these circumstances, the views of those with parental responsibility are not the primary concern for the court. It is exceedingly rare to encounter a sick child refusing surgical treatment, (other than adjunctive blood transfusion). We have encountered a  case of a child refusing a fourth thoracotomy for the recurring metastases of osteosarcoma; a refusal that was not challenged.

As a general rule, English courts have not accepted children’s refusal of life-saving treatment, although there have been exceptions when children undergoing palliative care were being considered. But if you do encounter a competent child who is refusing serious medical treatment, a swift referral to the Trust solicitors, and if needs be the Family Court, will crystallise both professional and family perspectives. In hindsight, this usually proves to be a positive and helpful step for all concerned.

 

Refusing mundane treatment

Enquiries: Is it true that whilst children agree with our plan, we accept their consent; but if they refuse, then we’ll overrule them? (i.e. “Yes” to “yes” but “no” to “no”);  Is it true that children must accept treatment if it is in their best interests?

It is rare for children (or their parents) to refuse lifesaving treatments, but common for children of any age to refuse to cooperate with the mundane. Toddlers are rarely keen to have an intravenous injection or device…but it is almost invariable that their accompanying parents will be anxious to see them comply, so either they or a clinical colleague will assist with the process. Equally, induction of anaesthesia in toddlers may cause alarm, but provided the treatment can be construed as being in their interests, benevolent compulsion is entirely acceptable; to do otherwise would not be consistent with the child’s welfare.

The older child who is competent to make clinical decisions is an entirely another matter. Consider the adolescent with a chronically inflamed ingrowing toenail, requiring (in your view) surgery. The child and his family, living sixty miles away, have arrived for treatment as a day case, and all parties are keen to resolve the toenail. Both parents have taken the day off work, used petrol for the journey, and feel somewhat desperate to bring their child’s symptoms to a conclusion. Mother and son both seek to sign the consent form…and progress joyfully towards the theatre waiting area. Together they enter the anaesthetic room, to be met by the anaesthetist; smiles all round. But at the first mention of an injection, the child seeks to leave . He is 130kg. And he will not listen to anyone. Are you planning on the ‘ten strong men’ approach? Presumably not. People and stuff could get broken…he may forever be disenfranchised from medical care if you try and hold him down. So you desist, they go back to the day ward. The now-infuriated parents tell him what they think…so he may yet change his mind and try again at the end of the list. If that fails, consider what awaits him during the drive home…he will probably be back in a few months.

So the notion of ‘no to no’ is mistaken. Competent children successfully refuse treatment (therapy which in principle would be in their best interests) every day in the NHS…but we play the longer game; they will return, chastened, if the need for treatment persists.

Competence & Capacity

Enquiries: Are competence & capacity the same thing? Can children be capacitous? What does ‘competence’ refer to? Can parents override the wishes of a competent/capacitous child?

Both competence and capacity refer to a person’s capability to make decisions…in the surgical context, either relating to medical treatment, or sharing personal information.

‘Competence’ describes the capability of a child under 16 years who is of sufficient maturity and intelligence to understand, and decide, concerning the matter in question. It can therefore be seen that the child under sixteen is presumed to be incompetent but is given the opportunity of proving their competence using the test of sufficient maturity and intelligence, and able to make a decision.

This  measure was provided by the common law in the case of Gillick, which related to defending confidentiality, rather than deciding on treatment. Children of 16 & 17 years, often described as ‘young people’, are presumed to be capacitous under the terms of the Mental Capacity Act 2005. If you have reason to doubt their capacity, the Act provides a two-stage test; firstly, are they able to understand, retain and weigh the information…and come to a decision. If they can do so, they have capacity. If not, then the second stage is engaged; have they a disorder of the mind or the brain? If there is such a disorder, then (in combination with an inability to ‘pass’ the first stage of the test) they lack capacity, and fall under the considerable protection of the MCA 2005. It can therefore be seen that whilst the possession of competence and capacity provide children of different ages with the ability to take decisions for themselves, they are intrinsically very different legal entities. It remains unclear (in October 2023) whether Gillick competence endures after the 16th birthday. For the moment, whilst it is obvious that capacity is presumed from that point, there is legal disagreement as to whether mental capacity and Gillick competence can co-exist. Please seek advice if needs be. However, there is no reason the ‘sufficient maturity and intelligence’ test should not be used as a clinical tool, if a 16- or 17-year-old is faced with a complex matter, and you find the test provided by the MCA 2005 too crude to help you determine whether the child can make the decision which faces them.

There is little point in the common or statutory law if a child’s competent or capacitous decision can be overruled by their parents. After all, one purpose of possessing competence or capacity is to defend one’s own decisions, including to sign a consent form for surgery.

Equally, surgeons should not be offering children treatments that are contrary to their welfare, so a parent seeking to overrule their childs consent will arguably be acting against his or her’s interests. This enquiry was made only once, by a surgeon who was offering amputation in unusual circumstances, and the parents were trying to dissuade their child from undergoing the procedure. If faced with that dilemma, it is recommended you seek advice from a regulated lawyer. It is interesting to note that the Code of Practice of the Mental Health Act 1983 advises against practitioners relying on parental consent to admit a competent or capacitous child for informal treatment under that Act, in circumstances where that child is refusing treatment. This reflects the unwillingness of the law to undermine the autonomy of a capable child….although plainly the MHA 1983, and the courts, provide authority for compulsory admission, if needs be.

Consent for treatment

Enquiries: Why is consent necessary? Must I mention all the alternative treatments? What purpose does consent serve? Can I take consent on the same day as surgery? Should I take consent from both mother and child? Should I take consent for the interventional radiologists? How long does consent last for? Should my boss take consent for cases she won’t let me do? Must I use the hospital consent form? Can I do consent over the ‘phone?

Consent causes anxiety, so it seems.

‘Taking consent’ is truly, simply, deeply…the wrong proposition. The purpose of consent for surgery is to put the patient or parent or both in the same position of knowledge, related to this particular procedure, as you are. The process by which this is achieved is called disclosure. Much better if we all described this process as ‘Providing disclosure for…’

There is no earthly reason why the parent in front of you should be able to anticipate the risks, or alternatives, of dealing with an asymptomatic toddler with a patent processus vaginalis associated with a hydrocoele. After all, they have never been to medical school, and have no grasp of physiology, anatomy, nor a copy of Netter’s Atlas. So how can they possibly know that the vas and vessels and nerves are at risk…and that if they wait long enough, the hydrocoele may resolve spontaneously…so for them, there is an alternative to do nothing at all. If that principle is followed, the mantra of disclosing the benefits, risks, and alternatives (including the option of doing nothing at all) makes more sense.

In what may be the most relevant common law decision relating to disclosure, a woman who sought cosmetic surgery for the scarred sclera in one eye. Although she asked the surgeon whether it was conceivable that the sight in her contralateral eye might be affected, he denied that possibility, although he knew of the existence of sympathetic ophthalmia. She underwent the surgery, and was pleased with the cosmetic result, although she was now blind in the contralateral eye, due to sympathetic vasoconstriction of the vessels to the optic nerve. If she had been told of that risk, she would have declined surgery. Disclosure of the risk of sympathetic opthalmia was not provided  in her case, and it should have been; the GMC demands that we disclose risks, including any risks that the patient enquires about.

English courts have held that disclosure should be provided prior to the day of surgery; it is plainly good practice to provide disclosure during outpatient consultations, recited in the clinic letter that confirms surgical plans. Hospitals are striving to record the provision of disclosure electronically,  but in the meantime a paper form requires a signature. No harm is done by filling in this form on the day of surgery, as long as the process of disclosure commenced on the day the decision was made in clinic to operate. Which in elective surgery, will impose a period for the family to reflect on the information disclosed to them.

If the child is competent or capacitous, they may elect to confirm their consent by signing a form, by deferring to their accompanying parent, or both. Our duty is to offer the choice, so it seems when considering a recent judgement.

Providing disclosure on behalf of another operator is not ideal, unless you are independently able to perform the procedure. This is because if you are unfamiliar with the planned operation, you may not be  in the position to answer questions that may relate to the risks, benefits, and alternatives…including the alternative to do nothing at all. It is recommended that if you are placed in this unenviable position, you should seek the advice of the person who ‘owns’ the list. If the ‘owner’ is your boss, you’re in an awkward and unenviable position. A convresation wih a trustworthy neutral colleague should be your first step.

Local rules abound, when considering the record of consent. There is no legal guidance as to duration; the consent form itself is not a mandatory legal creature. Whilst Trusts seek to protect themselves by the possession of a signed consent form, courts take little or no notice of its existence. The court is interested in evidence of the process of disclosure, so it is worthwhile recording in your clinic letters how you put the benefits, risks, alternatives…including the alternative of doing nothing…to the parents (and child, if appropriate). Your provision of disclosure really does matter. Provide disclosure over the ‘phone, if you must. But as a means of human communication, it is pretty shallow… no opportunity to draw a diagram or view the anxiety on a parent’s face that can be allayed with a smile and a clearer explanation. If you are determined not to meet the patient, ensure you make a careful note of what you disclosed, and how you responded to questions relevant to the disclosure process.

Duty of Candour

Enquiries: Can I be punished for not being candid? If there is neither fault not harm, must I provide the duty of candour? What is the point of candour? What harm comes from not being candid?

Since the advent of the ‘duty of candour’, two distinct entities exist.

There is a statutory duty, engaged by the occurrence of at least moderate harm. The hospital is obliged to fulfil that duty, usually through the employment of it’s patient  safety structure, which ensures that the patient or her family are fully appraised of what went wrong. Recently, substantial fines have been applied to hospital trusts failing to meet this obligation.

Unhelpfully , there is another, professional, duty of candour; it can be seen how these two (very different) duties are easily confused with each other. The professional duty is to be candid when ‘something goes wrong’. No harm needs to have been caused…no substandard care can be imputed into the threshold…simply that something has ‘gone wrong’. In more serious cases, where harm has occurred, it is almost inevitable that both the statutory and professional duties must be fulfilled in parallel, by the Trust and the clinician involved. The professional duty is applicable to all ten regulated professions.

An early English case, long before the statutory or professional duties were conceived, was that of Mrs Fenech. Unbeknownst to her, the obstetrician who closed her episiotomy left half of a broken no. 1 needle in her perineum; he failed to alert her to this fact. Oblivious to the retained needle, Mrs Fenech suffered severe, debilitating, perineal pain for more than 30years, arguably ruining her career and her marriage. Her general practitioner viewed her persistent complaints of pain as a waste of his time. On his death, his replacement was thoughtful, and in pursuit of referred hip pain ordered an XRay, revealing the needle. If the obstetrician had exercised the modern duty of candour, and told this young mother she had a large needle in her perineum, fully accounting for her pain, her life might have been rather different.

Considering Mrs Fenech’s story, there was neither fault nor immediate harm in breaking that needle…that was a commonplace event in the 1960’s, so I’m told. But her story reveals the purpose of the professional duty of candour, and the harm which comes from not being candid.

It seems likely that the GMC would regard failure to fulfil the duty would consider that to be care which falls below the reasonable standard expected of a paediatric surgeon, of any seniority.

Robert Wheeler

BAPS Ethics Committee Chair

Resources:

Clinical Law for Clinical Practice, CRC Press, 2021 ISBN 978-0-367-33559-5

Clinical Law: What do clinicians want to know? The demography of clinical law. Journal of Medical Ethics 2023 49 (4) 229-234.

Don’t equate competence with capacity 2020 Archives Dis Childhood

Does parental influence survive the teenage to young adult transition? 2023 Archives Dis Childhood

Consent: Selecting reasonable alternatives for your patient. Bull. RCSE 2023

How do patients benefit from consent. Bull. RCSE 2022

https://www.uhs.nhs.uk/health-professionals/clinical-law-updates/