Flashcards in Child Health Deck (26)
Consent for 16 & 17 year olds?
Presumed to have capacity to consent for procedures (not to refuse Tx, 1969): if they have capacity, they can consent to treatment (in the absence of their parents)
If they refuse to consent, then those with parental responsibility or a court order can give consent to treatment in their best interests
Presumption does not include participation in research/interventions that do not provide direct health benefit to the individual concerned / organ donation (if later assessed competent they can consent for these activities)
If a parent consents and the young person does not make a clinical judgement to determine whether it is practical and in their best interests > avoid elective procedures until the dispute is resolved .
Consent for under 16s?
Presumed to lack capacity > Gillick test to assess whether they have capacity to provide independent consent
- If pt. refuses consent, then same as for 16-17 year olds
- Unlikely to have under 13 (but may for some treatments)
Criteria is not well specified: sufficient understanding and intelligence to enable them to understand what is proposed
Competent to consent for the proposed intervention if they can understand:
- That a choice exists
- The nature and purpose of the procedure
- Risks and side effects of the procedure
- Alternatives to the procedure
And is able to:
- Retain the information long enough
- To weigh the information
- Arrive at a decision
- And to be free from undue pressure
Gillick competence relies on intelligence, maturity and experience (not on age)
- Does not have the right to refuse treatment
During Gillick case an additional set of guidelines were suggested by Lord Fraser to assist with reproductive decision making (contraception only; under 16s)
• Understands professional’s advice
• Cannot be persuaded to inform their parents or allow the professional to contact them on their behalf
• Likely to begin, or continue having, SI with or without contraceptive treatment
• Unless the young person receives Tx, their physical or mental health, or both, is likely to suffer
• Young person’s best interests require them to receive contraceptive advice or treatment with or without parental consent
DOH guidance on children requesting contraception?
DOH 2004: when <16 requests contraception, should discuss the risks of pregnancy, STIs and pros and cons of various contraceptive options – can provide contraception (and sexual and reproductive health advice and Tx), provided: understands advice and implications, physical or mental health would be likely to suffer, therefore in best interests.
Encourage to confide in parents / adult, but confidentiality important as may discourage teens from getting sexual health advice.
- Young people age 16-18 cannot consent if sexual activity is with an adult in a position of trust, or a family member
- Children <13 cannot consent at all
- Reporting to statutory agency only if in BEST INTEREST OF THE CHILD – this is usually the case if <13, but if <16 and with similar age partner may not be
- No requirement for mandatory reporting but should always be discussed with child safeguarding lead.
If parents and doctors disagree about child’s best interest, what steps should be taken?
- No capacity: at least 1 person with PR should consent
- PR have legal responsibility to act in child’s best interests
- If all with PR refuse to consent and doctor thinks Tx in child’s best interests, courts should be involved
European Court of Human Rights (Glass vs UK 2004): failure to refer such cases to the courts is a breech of the child’s Article 8 rights.
- If there is an emergency and no time to involve the courts act to save the child from serious harm
Best interest: not about ‘medically best’
• Judge is only person who can override parental wishes (person with PR): unless emergency / life at risk – proceeded and then seek a court order)
• Child must be at risk of serious harm to even think about overriding PR. Lots of steps before a court order – people can make unwise decisions up to a point > second opinion, clinical ethics committees; but in emergency – act!
What does children's act say about parental disagreement?
Children Act (1989) Section 2(7):
"Where >1 person has PR for a child, each of them may act alone and without the other (or others) in meeting that responsibility; but nothing in this Part shall be taken to affect the operation of any enactment which requires the consent of more than one person in a matter affecting the child"
Small number of important decisions where a person caring for the child must either get the consent of everyone with PR, or get leave from the court:
- changing the child’s name
- immunisation of the child
- circumcision of the child
- sterilisation of the child
- taking the child outside the U.K in certain circumstances
Section 2(8) also makes clear that a person using their PR cannot act in a way which is incompatible with any court order, but in the end, any matter which parents cannot agree on must be resolved (if there is no other way of coming to an agreement) by one of the parents taking the matter to court.
GMC Guidance on non-therapeutic procedures for children?
GMC 0-18 (2007): ‘Well-being includes treating children and young people as individuals and respecting their views, as well as considering their physical and emotional welfare” – for cosmetic procedures, medical and non-medical benefits and disadvantages considered in child’s best interest; not NHS funded but may be appropriate to consider referral where needs of patient can be evaluated?
Ethics of childhood immunisation?
Level of immunity to eliminate measles is 94-96%, in US immunisation is required for children entering public schools, and compulsory immunisation laws exist in Eastern Europe / South America.
Consent given by person with PR in UK.
Side effects: fever, rash, local soreness, rarely febrile convulsion.
If child is to benefit from herd immunity to what extent should parents be at liberty to decline immunisation because they do not consider it in child’s best interests? Balance of state interference in decisions that may cause harm vs harms of coercion
Dare: argues mass immunisation programs can tolerate small numbers of parents who refuse them as there is no significant reduction in overall benefit so no real harm ensures from respecting autonomy.
Low uptake MMR UK – increased incidence of measles – may rarely cause death. Referred to court if parents disagree, judge considers best interest – MMR generally considered best interest of child due to medical benefits.
GMC Guidance about acting on safeguarding concerns?
"You should follow up your concerns and take them to the next level of authority if you believe that the person or agency you told about your concerns has not acted on them appropriately and a child or young person is still at risk of, or suffering from, abuse or neglect’
- If still suspect abuse – positive obligation to disclose info; after contacting social services on phone, written referral needed in 48 hours, if no reply within 3 working days should contact again.
- Honest approach by keeping parents informed and discussing concerns and processes involved with them is good medical practice and may help prevent outcomes – should be attempted as far as compatible with welfare of child
- When speaking to child don’t ask leading questions or attempt to investigate alleged abuse as may be detrimental to prosecution; all hospital will have protocol
Laws on FGM?
Illegal in UK: dangerous tradition, horrific medical consequences, primarily performed on girls who cannot consent (4-13), misogynistic in patriarchal societies to repress female sexuality.
UK and other countries legislation – crime to ‘excise, infibulate or otherwise mutilate the whole or any part of the labia majora or labia minora or clitoris of another person’ – Female Genital Mutilation Act 2003; Section 1
However, genital cosmetic surgery as piercings or labioplasty is rarely criticised and has not resulted in prosecution.
1985; Prohibition of Female Circumcision Act introduced – criminal offense to circumcise any girl or woman living in UK no matter what nationality, religion or culture.
In 2003, Act repealed by FGM Act 2003: prevented British inhabitants taking children away on ‘holidays’ to be circumcised – unusual step since crimes usually committed abroad not liable to prosecution under British penal system.
- Section 6 of the act: no distinction can be made between FGM performed on minors or competent adults and prosecution can occur no matter which country FGM is performed. Specifically forbids mutilation ‘required as a matter of custom or ritual’ even if not performing it may have adverse mental health consequences. The Act also extended the prison sentence from 5 to 14 years.
- Serious Crime Act 2015 imposes a duty on healthcare professionals, teachers and social care workers to notify the police when in the course of their work they discover an act of female genital mutilation appears to have been carried out on girl under 18. This was not breach any duty of confidence or other restriction on disclosure of information. A court can make a protection order to protect girl against commission of FGM.
- Obligation to safeguard girls at risk of FGM and report cases to child protection team. Refugees, asylum seekers and migrants need to be given info about their health and UK legal and child protection issues regarding FGM. Aim to work in partnership with parents and families to protect children through parent’s awareness of the harm caused to the child.
o Older girls in family have had procedure
o 7-10 most at risk
o Intervention more likely to succeed if involved workers from or with detailed knowledge of the community concerned
o Girl who has already had procedure should not normally be registered on child protection register unless additional protection concerns exist but should be offered counselling and medical help. Consideration given to any female siblings at risk.
Ethical issues surrounding FGM laws?
Multicultural environment: respect others religious and cultural beliefs and values – cultural vs individual rights.
Some human rights are fundamental and supersede differences in cultural morality?
Counterargument: different moral codes are applied by different cultures and these should not be criticised by people who do not have an intimate understanding of that culture (cultural relativism).
Relativism: there are no absolute truths or morals – existence of diverse moral values, changed greatly over time and culture – morals are merely socially approved habits, and moral code that one culture follows does not have to be the same as that of another and should not be subjected to criticism from the subjective view of an outsider. Encourages diverse cultural expression and harmonious living in pluralistic societies because it fosters attitude of acceptance of other cultures.
Non-therapeutic circumcision issues?
BMA: male circumcision is generally assumed to be lawful, both parents must give valid consent. Child’s parents have to demonstrate non-therapeutic circumcision is in child’s best interests and this requires consideration of the harms and benefits for the child.
Fox & Thompson ‘infant male circumcision is characterised by an acceptance of levels of risk unimaginable in other health care contexts’.
- No convincing evidence of medical benefits, WHO does not recommend routine circumcision in developed nations to prevent UTI/HIV/STIs.
- Not pain free, potential risks (physical and psychological); bleeding and infection most common problems but also urethral damage, septicaemia. Psychological impact and altered sensation with neonatal circumcision is conflicting and indeterminate; inadequate pain relief at least transient suffering, risks if GA used. Complications rates low but can be severe. Irreversible therefore limits child’s future autonomy?
Benefits child by connection to a religion and adherence to norms? May be engendered through involvement with worship and therefore development of a sense of belonging to a religious faith or cultural group. If parents are non-practicing and child would be brought up in a secular community then this benefit of circumcision would not be made out.
- Lawful if child will be brought up in adherence with religious views that promote it
- Unless both parents agree, court decides if in best interest
GMC Confidentiality 0-18?
- Respecting confidentiality is an essential part of good care (applies when pt is a child/young person/adult) in order to build trust so they will seek medical advice/ tell you the facts needed to provide good care
- Same duties of confidentiality applies when using, sharing or disclosing information about children/young people as it does to adults
a. Disclose information that identifies the pt only if this is necessary to achieve the purpose of the disclosure- anonymise in all other cases
b. Inform patient about the possible uses of their information, including how to could be used to provide their care and for clinical audit
c. Ask for the patients consent before disclosing information that could identify them, if the information is needed for any other purpose, other than in the exceptional circumstances described in this guidance
d. Keep disclosure to the minimum necessary
Pros of sharing info about child with their consent?
- Sharing with the right people can help protect children/young people from harm & ensure they get help they need
- Can reduce the number of times they are asked the same questions by different professionals
- By asking you are showing respect and involving them in decisions about their care
- Explain why you need to share the information, and ask their consent (if they are able to take part in their decision making)
When to share info about child without consent?
a. overriding PUBLIC INTEREST in the disclosure
b. judge the disclosure is in the BEST INTEREST of the child/young person who does NOT have the maturity or UNDERSTANDING to make a decision about disclosure
c. When disclosure is required by the LAW (and when directed to do so by a court)
- Public interest if the benefits which are likely to arise from the release of information outweighs:
> the child/young person’s interest in keeping information confidential
> society’s interest in maintaining trust between doctors and patients
A judgement must be made on a case by case basis weighing up interests involved
Actions when considering a disclosure:
• Tell the child/young person what you propose to disclose and why (unless it undermines the purpose or places the child/young person at an increased risk of harm)
• Ask for consent to disclosure, if you judge the young person to competent to make the decision (unless it is not practical to do so)
• Always consider the possible benefits and harms that may arise from disclosure
• Consider the views given by the child/young person but disclose if it is necessary to protect them or someone else for risk of death or serious harm
- risk of neglect or sexual, physical or emotional abuse
- info. would help in the prevention, detection or prosecution of serious crime (usually against the young person)
- involved in behaviour that might put them or others at risk of serious harm e.g. serious addition, self-harm or joy-riding
- disclose promptly to an appropriate person/authority and record discussions + reasons
- if judge disclosure not appropriate, record your reasons for not disclosing
Disclosures when a child lacks capacity to consent
- try to persuade the child to involve a parent
- If they refuse and it is necessary in the child’s best interests for the information to be shared you can disclose to the appropriate authorities
- Record discussions and reasons for sharing information
When to WITHOLD info from a child?
Consequentialist perspective: maximise beneficence + non-maleficence
Evidence that children who are terminally ill are aware of this fact and are upset if feel this is being hidden from them.
- Find out accidentally – lose trust in parents and team
- Deontological perspective: veracity fundamental duty of doctor, basis of trust between doctors and patients
GMC guidance 0-18 years (2007): ‘honest and open’ with children as with adults, but also state that ‘young people should not be given access to information that would cause them serious harm’ – parents arguably know child best therefore good judge of what would constitute serious harm
- 12: there is potential to be competent to consent, even if not he is being asked to assent without basic understanding
- Doctors and parents may agree that further Tx in best interests but child not able to express opinion, autonomy ignored – will this make any material difference to the outcome, given his age would courts uphold his right or be more likely to deem him competent?
Currently no legal precedent where this has been tested with reference to a 12 year old!
What factors may enhance or compromise autonomy of child making decision about their care?
- Prior experience of illness and medical treatment(s), likely to be more informed and implications of Tx/non-Tx better understood
- Generally age and greater life experience enhance decision making abilities
- Adolescents tend to engage in risky behaviour due to neurocognitive development, may be under pressure from peers to do so, however some argue adolescents just as able to make rational decisions as adults
- Understandable information within supportive and therapeutic relationship will enhance decision-making capabilities
- Wishes of a young person should be taken into account as part of their Article 8 ECHR.
- Article 2: right to life; to take preventative measures to protect an individual who’s life is at risk
Note: it is not the case that ANY refusal can be overridden, interference with competent decision making of a young person is limited to circumstances where a refusal of treatment would probably > death or severe permanent injury
Court would not authorize Tx of a distressing nature which offered only small hope of preserving life
2010: Case 15 year old refused transfusion and died – should refusal for religious regions be given greater respect than other reasons?
o Benefit of life saved not accorded as much weight when life to be lived would conflict with patients values, beliefs and principles?
Dealing with poor engagement with treatment in an adolescent?
- Respecting autonomy and bodily integrity vs duty of care that no unnecessary harm occurs on journey to adulthood
- How can we argue we are respecting wishes of a competent, mature adolescent if remove their right to take responsibility for their own healthcare? What a 15 year old may consider best interests very related to ‘here and now’ and can lack maturity to conceive future best interests.
- An intellectual understanding may be very different to an emotive understanding about impact of non-adherence
- Imposing Tx on unwilling pt much more difficult if long term treatment / assessments
- COMMUNICATION – why not complying, misunderstanding, social issues etc – on-judgmental in depth rapport
- Agreed management plan widely demonstrated to improve pt concordance and long-term outcomes.
When to consider limiting treatment in children?
Best interests and limiting treatment; framework from the RC of Paediatrics and Child Health (RCPCH); 3 circumstances when limiting treatment can be considered because no longer in the child’s best interest to continue:
1. When life is limited in QUANTITY (death imminent or brainstem death confirmed) – if Tx unlikely to prolong life significantly, may not be in child’s best interests
2. When life is limited in QUALITY –includes situations where Tx may be able to prolong life significantly but will not alleviate the burdens associated with illness or Tx itself
3. Informed COMPETENT REFUSAL of treatment – older child with extensive experience of illness may repeatedly & competently consent to the withdrawal or withholding of LST. If they are support by their parents and the clinical team, there is no ethical obligation to provide LST.
If disagreement between parents and team: aim for consensus through clear and sensitive discussion > second opinion from independent clinical team > clinical Ethics Committee > chaplain / religious leader + mediation.
Nuffield Council on Bioethics?
Withdrawing life-support from babies?
Any decision made in respect of the child must carefully consider interests of all potentially affected persons, usually other family members (old or young) who will live with child or are dependent upon the immediate family in other ways.
However, best interests of the baby should be the central consideration and carry the greatest weight
Questions when deciding to not implement, withhold or withdraw Tx from baby after birth:
- What degree of pain, suffering and mental distress will the Tx inflict on the child?
- What benefits will the future child get from the treatment? Will they be:
> Able to survive independently of life support?
> Capable of establishing relationships with other people
> Able to experience pleasure of any kind
- What support is likely to be available to provide the optimum care for this child?
- What are the views and feeling of the parents as to the interests of the baby?
- How much longer is the baby likely to be able to survive if life-sustaining treatment is continued?
Ending life of a newborn?
“Taking intentional measures to end the life of a newborn commonly regarded as a violation of the duty to protect the life of the pt. Applies even when that baby’s condition is intolerable, with no prospect of survival or improvement. Professional obligation of doctors is to preserve life where they can. To permit doctors actively to end the lives of seriously ill newborn babies would compromise in a negative way the relationship between parents + doctors. Parents may lose trust in the impartiality of the advice from doctors, which is central to decision-making process."
Very difficult to identify an upper age limit beyond which actively ending life would not be allowed. If the law were to permit the killing of a newborn baby on the grounds that this was in the baby’s best interests, we have to ask why it would not be permissible to kill an incompetent adult on the same grounds.
We conclude: the active ending of life of newborn babies should not be allowed, no matter how serious their condition
Relieving pain and causing death: sedatives and pain relievers can have effect of hastening death, particularly if given at higher doses. Death may therefore occur in cases where doctors provide such treatments to reduce pain and suffering. This would not be unlawful as long as the doctor does not intend to cause death and is guided by the best interests of the patient. Doctors may fear that their motives in providing pain relief could be misinterpreted, but the BMA advises that “if the intention is clearly to relieve pain and distress and the dosage provided is commensurate with that aim, the action will not be unlawful”.
We conclude: provided the Tx is guided by the best interests of the baby, and has been agreed as a joint decision, potentially life-shortening but pain-relieving treatments are morally acceptable.
- Parents are generally considered to have the moral authority to make decisions in their child’s best interests in all the circumstances of life, though not as if they owned them. They are often best placed to know what is in the interests of their child because they share a special bond that begins during pregnancy and develops over time.
- Doctors have a responsibility to promote the best interests of the newborn baby and will be able to give a prediction of the outcome for the baby based on their knowledge and experience. Others, such as family members, religious advisers or healthcare specialists may contribute advice. Nurses: great deal of time with the parents and their baby and therefore well placed to provide additional insights into best interests of both child and family.
- UK: No legal distinction between withholding and withdrawing Tx, but law does not permit active neonatal euthanasia (Netherland’s Groningen Protocol offers defence to doctors who administer medication to end life suffering unbearably if strict criteria filled and parents agree)
- Court judgements on case by case basis focused on pain, suffering, mental distress, capacity for independent survival, pleasure and relationships with others. Without regard for parental or religious beliefs.
- Difficult to balance 2 potentially incommensurable factors e.g. pleasure severely disabled child derives from their relationship with their parents vs pain of invasive medical procedures, even more difficult in neonate who has no indication of preferences. Although parental views are considered, judiciary have stopped short of forcing doctors to provide continued treatment they believe is futile
Wiki: Futile medical care is the continued provision of medical care or treatment to a patient when there is no reasonable hope of a cure or benefit. Some proponents of evidence-based medicine suggest discontinuing the use of any treatment that has not been shown to provide a measurable benefit. Futile care is distinct from euthanasia because euthanasia involves active intervention to end life, while withholding futile medical care does not encourage or hasten the natural onset of death.
- No definitive way of determining when treatment is futile
- Slippery slope: voluntary passive euthanasia > involuntary passive euthanasia
Cost of NICU?
(BBC News 2012):
- £1,500 per day, average stay is ~ 3 months , huge burden on the NHS
- Long-term costs of providing specialist treatment to children
o 1/5 have a life-long serious disability
Specialist care cost (NICE 2008-2009): national average daily unit cost for special care is £476, high-dependency care is £759 , intensive care is £1081 (in 2008-09).
Outline the resuscitation guidance for prematurity?
Extreme Prematurity (<26 weeks)
o 25-26: admit unless severe abnormality incompatible with significant survival period
o 24-24+6: full intensive care; unless parent + clinician agreed condition means not in best interest to start this
o 23-23+6: very difficult to predict future outcome, prioritise parental wishes – however, if condition indicates will not survive for long clinicians not obliged to proceed with treatment if wholly contrary to their clinical judgement
o 22-22+6: standard practice is not to resuscitate – only if parents request and reiterate this request after thorough discussion with experience paediatricians and if clinicians agree that it is in baby’s best interest
o <22: experimental only – must have research ethics committee approval and informed parental consent
Ethical issues surrounding care for extreme preterm?
Can you even be sure of gestational age to 24 hour accuracy?
More likely to be comfort care if born in DGH e.g. Dorchester, Jersey
“The Cinderella effect” – most important in tertiary type care: the idea that resuscitation is more permissible from one day to the next (stroke of midnight). In a large multi-centre study in the US (Rysavy et al. 2014), there were significant increments in the rates of active resuscitation in the last day and the first day of an estimated gestational age week – suggesting that completed gestational weeks do influence clinical management.
Podcast: Moral Distress in Neonatal PICU
- Moral distress: nurses involved in day to day care, doctors make decisions; may be left in distress over decisions made
- Moral dilemma: doctors trying to come to a single decision
Parents now have the most power: parents driving decisions to carry on Tx in face of recommendations that not in child’s interest; nurses and doctors may be in moral distress coping with parents decision
- In the past (80s); treating children with Down’s syndrome (?) but now dilemmas with T13/18.
Some evidence to suggest that prem babies who survive into adulthood report QoL much higher than doctors would predict.
Neonatal brain constantly developing – difficult to predict the consequences?
Justice: allocation of resources for prolonged and potentially futile Tx in NICU depriving patients of timely treatment – used in allocating resources at national level (NICE) but should not be used to guide decision about withdrawal of care for individual patients.
Nuffield Guidance; clinicians to ‘continue to do the best possible for the pt in front of them’ – debate continuous over whether scarce resources to offer ICU for extremely preterm babies is just.
- Neonates have same status as older children; Article 2 right to life – does not impose positive obligation for continuation of medical Tx where it is no longer in patient’s best interest!
- John Harris argued should have same moral status as fetus as neither have ‘personhood’ i.e. entities which value existence, take an interest in their own futures, and take a view about how important it is for them to experience whatever future existence may be available. A person in persistent vegetative state (PVS) may not have these attributes, still accord value to their existence.
Outline Epicure study?
EPIcure (1995): clinicians use to counsel parents about likely prognosis. EPICure 2 (2006): survival after birth at extremely low gestational ages (22 to 26 weeks of gestation) and described what happened to the babies when they were first in hospital (now 10 years old!)
• Number of babies being admitted for care 22-25 weeks risen by 44% - nearly half as many again – between the two studies (first study was in 1995)
• Survival has improved for these babies by 13% (from 40% to 53%) and more so at 24 + 25 weeks. Although survival of babies born before 23 weeks remains very rare.
• Care that mothers who are likely to deliver prematurely and that their babies receive has improved- we are using more new treatments that have been shown to help babies
• Despite these improvements, the number leaving neonatal units with abnormalities on their brain ultrasound scans, and with lung, bowel and eye problems very similar to 1995 findings.
• In contrast to the 1995 study where we saw few differences between babies born at 23, 24 or 25 weeks, we can now see slightly better outcomes for babies born at 24 and 25 weeks
• Overall (esp. birth after 24 and 25 weeks gestation) has seen significantly more babies who do not have problems at follow up
> overall the proportion has risen by 11%, from 23% to 34%
> developmental scores appear to have increased meaning proportionately fewer children may developmental problems as pre-schoolers
The proportion of babies who have the most serious problems is similar in in both studies.
The number of babies receiving care has risen which means that the number of children with problems related to their prematurity also has risen.
Lots of different outcome measures are used to assess morbidity in the epicure studies, including lung function, retinopathy and physical disability. Physical disability is very difficult to measure.