Regulating doctors, ensuring good medical practice

End of life care: Considering the benefits, burdens and risks of treatment

  1. 92. Decisions about treatment for children and young people must always be in their best interests.29  This means weighing the benefits, burdens and risks of treatment for the individual child. A child’s best interests are not always limited to clinical considerations and, as the treating doctor, you should be careful to take account of any other factors relevant to the circumstances of each child.

  2. 93. Identifying the best interests of children or young people who may be approaching the end of life can be challenging. This is particularly the case when there are uncertainties about the long-term outcomes of treatment, when emergencies arise, and in the case of extremely premature neonates whose prospects for survival are known to be very poor.xxii Complex and emotionally demanding decisions may have to be made; for example, about whether to resuscitate and admit a neonate to intensive care, and whether to continue invasive intensive care or replace it with palliative care. It can be very difficult to judge when the burdens and risks, including the degree of suffering caused by treatment, outweigh the benefits of the treatment to the patient.

  3. 94. You must take account of up-to-date, authoritative clinical guidancexxiii when considering what treatment might be in a child or young person’s best interests. If there are uncertainties about the range of options for managing their condition, or the likely outcomes, you should seek advice or a second opinion as early as possible from a colleague with relevant expertise (who may be from another specialty, such as palliative care, or another discipline, such as nursing).

  4. 95. Parents30 play an important role in assessing their child’s best interests, and you should work in partnership with them when considering decisions about their child’s treatment. You should support parents, and must share with them the information they want or need, in a way that they can understand, about their child’s condition and options for care (subject to considerations of confidentiality). You must take account of their views when identifying options that are clinically appropriate and likely to be in the child’s best interests.xxiv

  5. 96. You must be able to explain and justify the factors that you judge should be taken into account when considering decisions about what treatment might be in the best interests of a child or young person. You must not rely on your personal values when making best interests decisions. You must be careful not to make judgements based on poorly informed or unfounded assumptions about the impact of a disability on a child or young person’s quality of life.

 

Footnotes

29 ‘Best interests’ is used here as the term is widely accepted and used across the UK in relation to decisions involving children and young people. It involves weighing the benefits, burdens and risks of treatment, as do decisions about ‘overall benefit’ in the case of adults who lack capacity to decide.

30 ‘Parent’ means anyone holding ‘parental authority’. For details of who can hold parental authority refer to 0-18 years: guidance for all doctors.

 

References

xxii There are many sources of advice, and examples of national guidelines include: The Management of Babies born extremely preterm at less than 26 weeks of gestation. A framework for clinical practice at the time of birth (Oct 2008) British Association of Perinatal Medicine; Nuffield Council on Bioethics Critical care decisions in fetal and neonatal medicine: ethical issues (November 2006).

xiii Examples of national guidelines on end of life treatment and care for children and young people include: Withholding and withdrawing life-sustaining treatment in children. A framework for practice (2nd edition 2004 – currently under review). Royal College of Paediatrics and Child Health. BMA (3rd edition 2007) Withholding and withdrawing life-prolonging medical treatment: guidance for decision making. See Part 7: Decision making by young people with capacity (pp 83-95) and Part 8: Decision making for children and young people who lack capacity (pp 96-108). See also the NHS Toolkit for high quality neonatal services (2009).

xxiv Parent support organisations such as Bliss, Tiny Life and Cerebra publish leaflets and give telephone support. See for example the Bliss leaflet Helping you with intensive care decisions for your baby (2010).



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