After reading this chapter you should be able to:
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apply legal rights of children and young people within the current UK legal framework
Ethics
Ethics are the principles by which we live our lives. They are defined by many factors including religion, law and custom. Ethical codes define our moral practice and aim to distinguish between right and wrong, good and evil or fair and unfair.
Medical ethics are the principles by which medicine is practiced and they are defined by the same factors as above plus the professional standards and expectations ascribed to medical practitioners. Professional bodies, nonprofessional groups (usually patient groups) and the general expectations of the public are responsible for developing these ‘principles of practice’.
The need for a code of conduct of practice has been long recognised. Even before the Hippocratic Oath, there were statements which defined important and agreed principles of medical care. The Hippocratic Oath was sworn by many doctors on qualification and updated versions are still used in many countries today.
The four ‘prima facie’ principles of medical ethics dictate that the clinician demonstrates and has a respect for autonomy, nonmaleficence, beneficence and justice although further principles have been proposed. The term ‘prima facie’ indicates that these four core principles should be followed unless they are in conflict with each other. In that situation it is necessary to make a choice between the conflicting principles—and paediatric practice provides many such conflicts!
The core principles are described as:
Autonomy
This is the recognition that a competent adult, with full capacity of understanding, is able to make decisions about their own lives and bodies—even where this may seem counter to their well-being and survival. Failure to respect this fundamental right may lead to the clinician being accused of assault.
Nonmaleficence
There is an understanding that any decision or treatment offered to a patient must not be harmful. The original Hippocratic Oath stated “I will use treatment to help the sick according to my ability and judgment, but never with a view to injury and wrong-doing”. Medical intervention, however beneficial to the patient, must balance the possible risk of harm to the patient. Where that risk is significant then intervention needs careful consideration and may even be inappropriate.
Beneficence
The aim and intention of the clinician is to act in the best interests of the patient and ensure that any advice or treatment provided is for the benefit of the patient.
Justice
This principle requires the clinician to be fair and honest in all dealings with their patient.
These four, often quoted, core principles, however, do present difficulties when applied to children and young people at all the stages of their emotional and intellectual development. In the intellectually competent young person, the principle of autonomy has a greater importance and the young person can agree to interventions without the permission of their parents or guardian. When, however, the competent young person refuses an intervention that is thought by others to be in their best interests, then ‘beneficence’ seems to take precedence and the opinion of the young person can be discounted.
When the child is considered to be ‘intellectually immature’, decisions will, understandably, be made by their parents or guardians. The principle of autonomy and nonmaleficence then becomes difficult to apply, but there would still be a place for understanding a child’s requests and concerns and an aim to respect these where possible. A young child will certainly object to a simple blood test but it would be argued that they are unable to understand the need for the test and the consequences of their objection. The young child is not allowed to make ‘unwise’ decisions and so it is the parents and clinicians who will agree that the intervention is in the child’s best interest—beneficence.
It can be argued that the principle of autonomy does not apply to children and young people. UK law supports this view as ‘…the child’s welfare shall be the court’s paramount consideration’ and so allows the court to make decisions on behalf of the child.
In practice, those attributes necessary to make informed decisions and act autonomously—to be able to understand the terms used in any information given, to process and rationalise that information and to understand the potential consequences of any decision—evolve over many years. The ability to act in an autonomous way will vary between individuals, between the issues under discussion and the range of potential outcomes for that decision, and this ability will mature over time. This was recognised by the UK courts:
“As a matter of Law, the parental right to determine whether or not their minor child below the age of sixteen will have medical treatment terminates if and when the child achieves sufficient understanding and intelligence to understand fully what is proposed.” —Lord Scarman (1985)
Confidentiality
The common law in the UK requires doctors to keep all personal information provided by patients as confidential and that an understanding of such an arrangement is essential to the maintenance of trust between the two parties. The General Medical Council, similarly, requires doctors to recognise that confidentiality is central to their interaction with patients. Ensuring patient confidentiality is, therefore, an ethical, professional and a legal requirement.
The principle, however, is not absolute and the doctor may share confidential information in certain circumstances. This would include situations where the patient agrees to the sharing of the information as in an individual with a medical problem asking for some details to be shared with a new employer, or when there is a court order to share the information such as a mental health assessment to place before a court which can then influence any sentence given. A more extreme example would be a need to share information that has a wider public interest such as when a patient makes a credible threat of violence to others.
Confidentiality requires further consideration in paediatric practice. Children and young people are entitled to the same standards of confidentiality as other patients, but their rights are not absolute and can be overridden when there is a clear justification, such as the risk of significant harm. There are situations where a mature, competent teenager would expect their medical information to remain confidential, including keeping that information from their parents. In such a situation, this would include denying parents the right to automatically view the medical records of the young person. If the medical practitioner felt that there was an exceptional reason that justified disclosure without consent, then the young person should be told of the need to break their confidentiality and the reasons fully explained. In the absence of any such reason justifying disclosure, they should be encouraged, but not forced, to share their health information with their parents.
The sharing of information about a child with the parents would, in most situations, be expected practice, but where there is a concern about the welfare of the child then some aspects of the care may be withheld—for example, if a carer is suspected of poisoning a young child—until more information is obtained.
Where there are safeguarding concerns then the paediatrician must share information with other members of the multidisciplinary team involved in child protection—social services and police. It would, however, be considered good practice to advise the parents that this was the intended action.
The four core principles have, however, been expanded and developed by various declarations over many years. Some, such as Declaration of Geneva, Declaration of Human Rights and the UN Rights of the Child, have all contributed to the establishment of codes of practice for the clinician.
A boy of 14 years was admitted to hospital with difficulty in breathing. Initial imaging had indicated that he had a thoracic lymphoma and he would require a biopsy, insertion of a central venous line and administration of chemotherapy. His prognosis was very good.
His parents asked that he was not told of the underlying diagnosis and that the word ‘cancer’ was not used as his grandfather had died of ‘cancer’ some 2 months earlier. They felt that they were acting in his best interests.
The consultant explained that their wish to protect him from the diagnosis was understandable and that it was clear that the parents were acting in his best interests. It was, however, important to consider what was in the best interest [beneficence] of the young man and for all the team members to be truthful and honest [justice].
The consultant explained that it was likely that the patient would work out the diagnosis even if he was not given the full diagnosis or the word ‘cancer’ not used (he was, after all, to be treated on a paediatric oncology ward). It was then pointed out that when he did find out that he had cancer he would be angry that those around him had not been truthful. If that did happen then it would undermine his trust in his parents and clinical team members and he then may not believe any future explanations provided. Furthermore, there was always the prospect that someone—friend, relative, team member—might inadvertently reveal the diagnosis.
It was suggested that by giving him the words and the understanding of his diagnosis that his fears and concerns may be reduced and such knowledge would allow him to participate fully in conversations about his illness.
After some further thought, both parents agreed to a full and honest discussion. It was agreed that the discussion would include the patient, the parents and members of the medical and nursing staff. The patient understood the information given and had confidence to progress through treatment. When last seen, he was at university and enjoying his life some 7 years after diagnosis.
The General Medical Council of the UK sets expected standards of medical care and training and has produced a series of booklets which outline important issues for the clinician.
GMC Professional Standards requires the doctor to:
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be honest
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be open
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respect confidentiality
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treat patients with respect
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ensure patient safety
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maintain up-to-date clinical knowledge
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ensure good verbal communication
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ensure good recordkeeping
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ensure robust teamwork
The GMC also produces specific standards of best practice for all doctors who have any contact with children and young people under the age of 18 years.
GMC Professional Standards for doctors working with children
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protect children from abuse or neglect
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communicate appropriately with children and YP
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respect their confidentiality
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treat patients with respect
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ensure patient safety
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maintain up-to-date clinical knowledge
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share relevant information with other agencies
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ensure good recordkeeping
Research ethics
Research is a fundamental basis for good clinical practice. It is the bedrock of improved understanding, improved treatment programmes and improved care and support for patients.
“Nothing is more terrible than to see ignorance in action”. —Van Goethe
It is incumbent on any good doctor to support research projects wherever possible, to access research findings whenever available and to implement research findings whenever feasible.
Research may be funded by the government (in the UK—National Institute for Health Research), commercial drug companies, university departments, health organisations and charities.
Medical research in the UK involving NHS patients or adult social care, any of the data or samples from these individuals and, in some cases, their carer, must submit their study to the National Research Ethics Service (NRES). No research on these individuals or data can be undertaken without full approval from an NRES ethics committee.
Research involving children requires the submission of the full protocol to a specific Research Ethics Committee designated to review studies in those under 18 years. Clarification of the process of age-appropriate explanations and the method of obtaining consent and assent will be examined before approval given.
Trials involving medicinal products in children (‘drug trials’) must go to a committee registered to review both paediatric and medicinal products studies. Such trials must be compliant with the EU Clinical Trials Directive of 2001 which requires written parental consent of any individual under the age of 16 years.
Law
The UK law recognises that children are individuals within a family and that parents have prime responsibility for the care and protection of their children. The laws aim to ensure children can grow and develop with the support of their wider family and reach their full potential.
It also understands that children and young people are potentially vulnerable and need protection from adults immaterial of whether they be the parents, relatives or unknown individuals.
There are some differences in the law relating to children between the four countries making up the UK, but in general they all have a similar approach to the legal issues relating to children and young people. The AKP exam will not test a knowledge of the differences in legal practice between the four nations of the UK. In clinical placements, however, it is imperative that all clinicians are aware of the legal directives for the geographical area in which they work.
Definition of a child
The UN Convention on the Rights of the Child defines a child as everyone under 18 unless “under the law applicable to the child, majority is attained earlier” and this definition was incorporated in UK law. This defined age recognises that the vulnerability of a young person persists into later teenage years and there is an ongoing need to protect young people from possible abuse and exploitation. The UK Children Act (1989 and 2004 along with subsequent amendments) applies to all children and young people up to their 18 th birthday.
Children in the family
The Children Act (1989 and 2004 along with subsequent amendments) established organisational structures and working arrangements for all those professionals closely involved with children and young people. These professional groups include:
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local authority services
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social services
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health care
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police
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education
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probation services
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young offenders’ institutions
The working arrangements between these groups was aimed at supporting the child within the family wherever possible and this was an important goal for any review of a child when welfare concerns had been raised. Those organisations, however, must work together to promote and protect the welfare of all children in situations where it was felt that the normal family arrangements had broken down.
The Act provided a legal framework for protecting children from abuse and required the compulsory intervention in family life for the best interests of a child. Consequently, all those who have contact with children and young people as part of their working practice have a legal obligation to report to the appropriate authorities—either social services or police—any concerns about the welfare and safety of a young person. When abuse is suspected, there is a primary duty of all investigative agencies to cooperate and share relevant information pertaining to their concerns about wider welfare of the child or young person. The doctor has a legal responsibility to assist in this process.
It is now mandatory for all social care staff, health care professionals and teachers in England to report female genital mutilation (FGM) in under 18s to the police.
Welfare of the child is paramount
All paediatricians must act in the best interest of the child, first and foremost. In most situations the intentions of the parents and clinician would be in agreement, but where there is conflict, the clinician must weigh up the implications of both decisions on the welfare of the child or young person. When a serious illness has major implications on the future health of the child, and there is a conflict between parents and clinicians, then the opinion of other senior colleagues should be sought and ultimately the involvement of the law courts.
Parental responsibility
A ‘parent’ is recognised as the biological or adoptive mother or father to the child. The biological mother has full parental rights and responsibilities and is recognised as the prime carer of the child. The biological father will have equal rights and responsibilities as the biological mother if he was married to the mother at the time of the birth or his name is recorded on the birth certificate of the child. Adoptive parents are given the rights and responsibilities during the legal adoption process.
Both legal parents retain their responsibility throughout any changes to their own circumstances such as major illness, criminal investigations or even imprisonment. A court order may remove that responsibility from either parent and transfer it to other individuals such as another family member or a local authority. The mother or father may also voluntarily surrender their responsibility and transfer it to another individual but again this must be done formally via a court order if it is to be recognised.
Consent
The law on consent for those under 18 years is understandably complex. It recognises that young people do not always have the capacity to absorb and understand complex information. That capacity to understand such information will change over time as the child and young person moves towards adulthood at their 18th birthday. During that time the law looks to the adult with parental responsibility to provide understanding on behalf of the young person. Current acts of Parliament identify those individuals with parental responsibility and directs that they provide the necessary informed consent.
The biological mother must always be approached for consent to any intervention on a young person or child. The biological father can only provide consent if he meets the criteria that gives him full parental responsibility and that responsibility is not lost following a divorce from the mother.
The biological father who was not married to the mother at the time of the birth or whose name is not recorded on the birth certificate may also be able to give consent if there is a formal court-approved agreement between the biological mother and biological father or a court-approved directive that transfers that responsibility to the biological father (for example, if the biological mother had incapacitating mental illness).
Both biological parents retain parental responsibility even if they are under investigation for issues of safeguarding related to the child. The parents still have to give consent for interviewing the child or the taking of images. If they refuse permission for any interaction that is considered important, then a court order would be obtained.
Those who can give consent for a child or a noncompetent young person:
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biological mother
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biological father married to mother at time of birth
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biological father named on birth certificate
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same-sex partner—only if adopted and through a court order
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nonbiological father—only through a formal court order
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adoptive parents—only through a formal court order
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social worker for child in care—through a court order
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medical practitioner—technically does not give consent but acts in the child’s best interest in extreme circumstances when parent not available
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