Providing palliative and end-of-life care for children and young people provides many complexities for health professionals. There are unique legal and ethical aspects of caring for children in a palliative or end-of-life setting due to the altered capacity of children dependent on their age. There is a difference between law and ethics: laws are binding and instructive of decisions and actions whereas ethics comprise principles and guidelines that inform decisions and actions in health care.
Law
The United Nations Convention on the Rights of the Child (UNCRC) 1990 defines a child as anyone under 18 years of age. Until a child reaches 18 years of age, an adult (usually their parent—see the Children Act 1989) should have responsibility for this child and therefore the decisions about their care. However, the Mental Capacity Act 2005 states that everyone over the age of 16 has the presumption of capacity. This means that although parents (or whoever has parental responsibility) are still responsible for their children until the age of 18, children can make their own decisions on their care from the age of 16 years. Additionally, a legal precedent set in the UK in 1985 allows medical professionals to assess whether individual children under 16 years of age, have the necessary understanding to make their own medical decisions and are therefore ‘Gillick competent’ (NSPCC, 2020) (Figure 1).
All humans, regardless of age, benefit from all of the rights within the Human Rights Act 1998, but children under the age of 18 also benefit from additional legislation laid out in the Children Act 1989 and 2004 and the UNCRC 1990. In the provision of palliative or end-of-life care for children, it is important to note that the UNCRC 1990 (page 5) guides that ‘States Parties shall assure to the child who is capable of forming his or her own views the right to express those views freely in all matters affecting the child, the views of the child being given due weight in accordance with the age and maturity of the child’. This is supported by the UK legal precedent of Gillick competence, which allows children to begin to give consent as their capacities develop,
There are two key rights within the Human Rights Act 1998 pertaining to palliative and end-of-life care: that everyone has ‘the right to life’, as well as the ‘right to be free from inhuman or degrading treatment’. In the complex nature of palliative and end-of-life care of children, there are instances where it can be difficult to ascertain when one right should take precedence over another, and this is when ethical factors need to be taken into consideration.
Ethics
There are numerous ethical considerations when providing palliative care for children and this is an area that has sparked much debate in recent years (Marland and Davies, 2019). There is a need for nurses to ensure that all decisions are made following four major principles (Worthington, 2005):
The Royal College of Paediatrics and Child Health (RCPCH) offers principles to govern best practice in ethical decision-making in palliative care. These identify that ethical decision-making requires ‘open and timely communication between members of the healthcare team and the child and family; respecting the values and beliefs of those involved; and the application of fundamental ethical principles, including respect for human rights’ (Larcher et al, 2015: 12).
The role of the health professional
It is the role of the registrant to ‘act in the best interests of people at all times’ (Nursing and Midwifery Council (NMC), 2018) and this can sometimes be challenging in palliative care, when it is not always clear what is in a patient's best interests. When faced with clinical decisions in palliative care in children's nursing, Worthington (2005) identified the health professional's role: to use evidence-based practice regarding possible patient outcomes, to recognise the dying stage of life and act appropriately, to use appropriate communication skills and ensure effective processes to reach agreement.
‘Decisions between treatment options, including those of limitation, withholding or withdrawing treatment, should be freely made by those with the capacity or legal authority to do so, on the basis of sufficient information …
‘Parents have ethical and legal authority to decide on behalf of children who are unable, for whatever reason, to express preferences, unless they are clearly acting against the child's best interests. If they are unable, unwilling or persistently unavailable to make decisions on behalf of their child, the court's intervention should be sought.’
Therefore, it is the health professional's role to ensure that patients, parents/carers (or whomever has legal responsibility for the child's decision) have the necessary information to make decisions about their care and act as an advocate if needed (NMC, 2018). In order to deliver the high-quality palliative care required for children, health professionals should have access to support, including clinical supervision, appraisals, mentoring and psychological support (Together for Short Lives, 2018).
Difficult situations
There are several situations that may arise in palliative care of children in which decision making can be difficult. Examples of such situations are given here, but it is important to note that when difficult situations arise, health professionals should refer to appropriate guidance and seek advice if they are unsure of the correct course of action.
A child who is unable to make decisions for themselves due to age or capacity, but has no legal parent or guardian available
In this circumstance the RCPCH guides that ‘clinically appropriate treatment should be provided unless there are sufficient grounds to believe that it will be unsuccessful or will produce significant burdens for the child’ (Larcher et al, 2015:12)
The parents of a child wish to make a decision on behalf of their child that the health professionals feel would not be in the child's best interests
During the above situation the RCPCH guides that ‘resolution of disagreement should normally be achieved by discussion, consultation and consensus’ but also that:
‘Legal intervention should be considered when disputes between the healthcare team, child, parents and carers cannot be resolved by appropriate attempts to achieve consensus, for example, clinical ethics consultation, use of advocacy and liaison services, intercession by religious leaders and mediation.’
Article 8 of the Human Rights Act 1998 will also be important to consider in these legal discussions as all humans have the right to ‘respect for private and family life’.
A palliative child is in pain but has already been given the maximum safe amount of analgesic and any more could compromise the child's clinical condition
This is a common situation in palliative care, when children may require more medications than would usually be given safely. The RCPCH offers clear guidance:
‘It is ethically appropriate to … provide appropriate palliative treatments (including analgesia and sedation), even if it is reasonably foreseeable that the latter may hasten death. These steps are a desirable and acceptable part of contemporary end-of-life care and do not constitute euthanasia.’
Conclusion
There are many legal and ethical considerations to providing palliative care for children and the complications arising from these are known to be difficult for health professionals. Above all else, UK law and the RCPCH state that it is not permissible for health professionals ‘to take active steps that are intended to end the life of a child’ (Larcher et al, 2015: 13).
Difficulties can arise in many ways in palliative care of children, including situations where families must experience their child suffering or where families are reluctant to stop accept palliative care for their child. It is the duty of healthcare professionals in these situations to support the child and their family in order to ensure the best possible outcome for all.