| This document forms part of the Seeking and Providing External Second Opinion in Paediatrics guidance. For the full guidance, see our landing page. |
Listening to the views of children and their families
Children and their families are not only beneficiaries of healthcare but also key stakeholders with invaluable insights and experiences. With support from the children’s charity, Together for Short Lives, the insights of families were sought to meaningfully inform and influence the development of this work.
For a family, having a child who is critically ill and making decisions about their care is an extremely difficult and distressing experience. Families told us the most important things for them were:
- Having a transparent process where they felt involved in decision making. Families said they would like there to be an accessible and transparent process in which they are empowered to be involved in decision making and kept informed throughout. They reported that this would build trust and provide reassurance that everyone is working for their child’s best interests. They also said that being told early on in their child’s treatment plan of the possibility of having a second opinion would have increased their confidence in the team treating their child.
Things should be transparent and accessible for parents - full information at all times and truly transparent so no misunderstanding from either side
- Clear and honest communication. Families told us that it was important to have clear, honest communication from the start between themselves, the healthcare team treating their child and other teams involved in their child’s care. They would value having a lead consultant as a central point of contact who could coordinate the ESO process. Families felt that honest communication around the possibility that treatment might not be effective would be useful early on, and they would like support to prepare and plan for this eventuality.
It’s so incredibly simple really. It is about communication and all the stuff we know should happen - communication between hospitals, between professionals, with parents, putting the child and family at the centre.
- Their child being seen as an individual and expert in their experience, as well as acknowledgement of families as the experts on their children. Families felt it was important that the doctor or team giving the ESO should consider information on the child’s quality of life and what is ‘normal’ for them, in order to gain a wider picture of their child as an individual. Young people should also be acknowledged as experts in their own care.
It was important for us that they could see the child behind the numbers.
- Everything possible has been done to give their child the best quality of life. Families said it was very important for them to have no regrets and feel that they and everyone else had done everything they could to give their child the best quality of life for as long as possible.
For us as parents the most important thing is that when our child does pass away, we know we’ve done absolutely everything to give them the best quality of life and for as long as possible.
- Independence of the external second opinion. Families told us they felt it was important for the clinician or healthcare team giving the second opinion to be independent of the team treating their child to avoid any perception of bias. It was also essential that they had all the information necessary to make an informed decision. This includes information from the family giving a wider picture of their child as an individual.
- Preferred routes to requesting an external second opinion. Families said that they would prefer to ask a professional body or other similar organisation for a recommendation as they are seen as being impartial and able to identify the most appropriate person or team.
The best interest of the child is paramount
The best interest of the child should be the primary consideration in all decision making. In cases of conflict, healthcare professionals, families and others can seek a court’s decision on whether what they wish to do is in the child’s best interests, including whether a decision to withdraw treatment is lawful.
In this case, the most important matter for the consideration of the court is the welfare of the child. Welfare is to be understood in its widest sense, including physical and emotional wellbeing, quality of life and the moral and religious welfare of the child. Courts consider this question from the point of view of the child and conduct a balancing exercise in which all the relevant factors are weighed.
For questions about the withdrawal of life sustaining care, there is a strong presumption in favour of a course of action that will prolong life, although in certain circumstances this may not always be the case.1
It is very important that getting a second opinion is a way of establishing what is best for a child, rather than shoring up one or other of two conflicting viewpoints
The principles of ‘reasonableness’
Where several different but justifiable evidence-based treatment options co-exist, each of which representing a respectable body of professional opinion on the appropriate treatment, there may be a legitimate difference of opinion about what is best for the child. We suggest in such situations that a reasonable approach should be taken in deciding on a course of action.
We describe a reasonable course of action as one that is likely to offer a child more benefit than any harm it may cause. This of course may change over time, and if new or different information is presented, then the course of action should be reviewed to make sure it is still reasonable.
Where every possible course of action will incur some form of harm it is necessary to balance the likelihood and significance of some harms over others (i.e. a balance of risks). All harms as well as benefits in that balance must be considered broadly; this includes subjective harms and benefits such as the enjoyment and meaning a child attributes to their life, as well as objective information such as research evidence and investigation results.
It is important to recognise that agreement between children, families and clinicians does not in itself ensure a reasonable course of action. Each decision needs to be carefully tested to confirm it is in the child’s best interests. This could be assisted through gaining advice from a senior clinician within the team.
Being collaborative and transparent
The process for requesting, providing and receiving second opinions should be collaborative and transparent; families should be at the heart of decisions made to the child’s care.
The overarching principle underpinning this collaborative work is that the best interest of the child is paramount.
Key terms and definitions
- List of key terms and definitions
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Child or children Babies, children and young people under the age of 18 across the UK. Critical friend A trusted professional, usually within the same organisation, who is requested to offer a critique of a colleague’s management of a challenging situation; for example, either to advise on treatment decisions or to help navigate circumstances where the child’s family and clinical team disagree on the correct course of action. Clinical Ethics Advisory Committee (CEAC) A group consisting of health and other relevant professionals who provide advice and support to clinicians and families on ethical issues that have arisen during clinical practice. Expert witness A healthcare professional, generally appointed by a solicitor, whose skills and experience qualify them to testify on a particular medical area in a court or tribunal setting. External second opinion (ESO) An external medical opinion on the patient’s proposed course of treatment from a second independent health professional/MDT within an appropriate specialty. The initial suggestion to get an ESO may come from a patient/family, or from the child’s health care team. This is for children facing significant life changing decisions, and the second opinion should come from a separate Trust or Health Board. Family Parent, carer or guardian identified as the person with parental responsibility of the child. This could include the local authority. Family advocate A named point of contact who can provide information to the family on the ESO process, and who can signpost to sources of support. See this section for more information. Health organisations NHS Trusts and NHS Health Boards across the UK. Healthcare professional A clinically qualified person who is working within the scope of practice as determined by their relevant professional body and who is registered with that body as competent to practice. Mediation An impartial service designed to support patients, families and NHS staff work together towards resolution of disagreements. Multidisciplinary team (MDT) A group of professionals from one or more clinical disciplines from hospital and community settings who together make decisions regarding recommended treatment of individual patients. Named consultant A named consultant taking on overall clinical responsibility for the child. National Advisory Panel A multidisciplinary team of experts organised at national level to support decision making around treatment options in complex and rare diseases. Such panels may enhance consistency and transparency around care pathways and aim to ultimately improve survival outcomes. Parallel planning Parallel planning offers an opportunity for children with life limiting conditions to live their lives to the full while plans are made for managing their ongoing care and end of life. Referral for second opinion The administration and paperwork that is required to support the process of requesting an external second opinion. Service planner Organisations responsible for planning, commissioning, or providing health services. Team around the child The professionals that contribute to the wider health and wellbeing of the child. This would include the child’s named consultant, the MDT, GP and any professional in an advocate role.
- 1 Portsmouth Hospitals NHS Trust v Wyatt [2005] EWCA Civ 1181.