Child Health Flashcards
What is the law on consent in minors?
Minors = under 18
Increasing autonomy is recognised with increasing age and maturity.
Do not allow minors to come to serious harm on grounds that a minor and/or parents refuse consent for necessary or urgent Tx.
Difference in consent between <16 and >16 year olds?
16 and 17 year olds
Presumed to have capacity to consent for medical procedures (not to refuse treatment) 1969
If they have capacity, can consent to Tx (in the absence of their parents). If they refuse to consent, then those with PR or a court order can give consent to Tx in their best interests.
Presumption does not include participation in research/interventions that do not provide direct health benefit to the individual concerned (If 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.
What is Gillick competence?
Under 16 presumed to lack capacity
Gillick test used to assess whether they have capacity to provide independent consent
Criteria is not well specified: sufficient understanding and intelligence to enable them to understand what is proposed.
If the pt. refuses consent, then same as for 16-17 year olds.
Unlikely to have under 13 (but may for some treatments).
If parents and doctors disagree about what is in a child’s best interest, what steps should be taken?
No capacity
- At least one person with PR should give consent
- Those with PR have a legal responsibility to act in the child’s best interests
- If all with PR refuse to consent and doctor thinks treatment is in the child’s best interests, courts should be involved
- If there is an emergency and no time to involve the courts, act to save the child from serious harm
Outline tests for capacity in children?
A child is 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
- Competence relies on intelligence, maturity and experience (not on age)
- Does not have the right to refuse treatment
Fraser guidelines:
- During the Gillick case an additional set of guidelines were suggested by Lord Fraser to assist with reproductive decision making
What is PR and who has it?
When a baby is born to a surrogate mother, does the intended mother have automatic parental responsibility? If the surrogate mother is married, does her husband have parental responsibility?
Automatically belongs to child’s mother (who gave birth to the baby, not necessarily the egg from which they were conceived - (surrogate mother).
Lasts until 18th birthday
> 1 parent may have PR but only one person with PR usually needed to give consent on behalf of the child (except exceptional circumstances e.g. non-therapeutic circumcisions)
Once a person has PR for a child, not easily transferred or given up (e.g. getting a divorce and/or not being the primary carer of the child does not mean that PR is relinquished)
PR is accorded:
- To the biological mother (birth mother not egg mother!)
- To the father of the child if he is married to mother at the time of birth
- Unmarried fathers who are registered on the birth certificate (since 11.12.2003)
- Other (unmarried) fathers can acquired PR by various means: (marrying the mother, PR agreement, by a court order).
- Civil partner can also acquire PR.
5.Others can acquire PR e.g the local authority or people who adopt a child (biological parents relinquish their PR)
How does PR work for same sex parents?
Law differs in Scotland vs. England and Wales.
Same sex partners will have PR if they were civil partners at the treatment (e.g. donor insertion or fertility treatment)
Non-civil partners- 2nd parent can get parental responsibility by either:
applying for parental responsibility (if a parental agreement is made
Becoming a civil partner of the other parent and making PR agreement jointly registering the birth
Confidentiality (GMC guidelines 0-18)
Principles of confidentiality?
- Respecting confidentiality is an essential part of good care (applies when the 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 info that identifies the pt only if this is necessary to achieve the purpose of the disclosure- anonymise in all other cases
b. Inform the pt 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 pt consent before disclosing information that could identify them, if the info is needed for any other purpose, other than in the exceptional circumstances described in this guidance
d. Keep disclosure to the minimum necessary
Confidentiality (GMC guidelines 0-18)
Sharing information with the consent of child or young person?
- 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).
Confidentiality (GMC guidelines 0-18)
Sharing information without the consent of child or young person?
If a child/young person doesn’t agree to the disclosure, there are circumstance in which you should disclose information:
- Overriding public interest in the disclosure
- When you judge the disclosure is in the best interests of the child/young person who does not have the maturity or understanding to make a decision about disclosure
- When disclosure is required by the law (and when directed to do so by a court)
Public interest
- A disclosure is in the 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
Confidentiality (GMC guidelines 0-18)
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
Examples:
- child/young person is at risk of neglect or sexual, physical or emotional abuse
- The info. would help in the prevention, detection or prosecution of serious crime (usually against the young person)
- child or young person is involved in behaviour that might put them or others at risk of serious harm e.g. serious addiction, self-harm or joy-riding
- disclose the information promptly to an appropriate person/authority and record your discussions and reasons
If you judge disclosure is not appropriate record your reasons for not disclosing
Confidentiality (GMC guidelines 0-18)
Disclosures when a child lacks capacity to consent ?
- If a child lacks capacity to consent and doesn’t want their parents to be informed, 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
Confidentiality (GMC guidelines 0-18)
Disclosures when a child lacks capacity to consent ?
Outcomes in prematurity:
- The EPIcure study is one of the studies clinicians use to counsel parents about the likely prognosis for their babies
- EPICure 2 (2006) looked at 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.
(Bear in mind that this study is now ten years old)
The main conclusions from results:
• The number of babies being admitted for care between 22 and 25 weeks of gestation has 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 and 25 weeks. Although survival of babies born before 23 weeks remains very rare
• The 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 of babies leaving neonatal units with abnormalities on their brain ultrasound scans, and with lung, bowel and eye problems are very similar to what we found in 1995.
• 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.
End of life issues in children
Best interests and limiting treatment
- The framework from the Royal College of Paediatrics and Child Health (RCPCH) provides three circumstances when limiting treatment can be considered because it is no longer in the child’s best interest to continue:
1. When life is limited in quantity – if treatment is unlikely to prolong life significantly it may not be in the child’s best interests to provide it
2. When life is limited in quality – this includes situations where treatment may be able to prolong life significantly but will not alleviate the burdens associated with illness or treatment itself
3. Informed competent refusal of treatment – An older child with extensive experience of illness may repeatedly and 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.
Nuffield council on Bioethics
- Any decision made in respect of the child must carefully consider the interests of all potentially affected persons, most usually other family members, old or young, who will live with the child or are dependent upon the immediate family in other ways.
- However, the best interests of the baby should be the central consideration and carry the greatest weight
Questions to consider when making a decision to not implement, withhold or withdraw treatment from a baby after birth:
- What degree of pain, suffering and mental distress will the treatment 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?
NICU cost (BBC News 2012):
- £1,500 per day, average stay is ~ 3 months
- Creates a huge burden on the NHS
- Additionally there are long-term costs of providing specialist treatment to children
- 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)
