|This document forms part of the Seeking and Providing External Second Opinion in Paediatrics guidance. For the full guidance, see our landing page.|
Principle of shared decision making
Requesting an external second opinion (ESO) must start with the principle of shared decision making to ensure that children and their families are supported to make decisions that are right for them. Starting with this principle can create and harness relationships between the child’s family and their health team that are based on collaboration.
The conversation brings together:
- the healthcare professionals’ expertise on treatment options, evidence, risks and benefits
- what the child and their family know best: their preferences, personal circumstances, goals and values.1
So much of this is about the trust and acknowledgement that I’m as much a part of the choice as they are.
The importance of active engagement and honest open communication as early as possible cannot be overstated.2 Healthcare professionals in paediatrics play a critical role in supporting shared decision making, explaining results of investigations and describing the proposed course of treatment.3
Where religious or cultural beliefs may influence decisions about a child’s care, it is recommended that families are supported to speak to religious leaders in their community for guidance and support. Healthcare professionals may also find it helpful to seek advice from religious leaders to better understand families’ beliefs, and religious leaders should have a dialogue with the healthcare team to gain background information.
The importance of 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. Parallel planning is everyone’s responsibility, and while in some cases it may fall to the palliative care teams and services to facilitate, it is the responsibility of the child’s named consultant and the team around the child to initiate these discussions.
Parallel planning is not a single conversation but should continue through the child’s disease course from diagnosis until end of life. Parallel planning complements discussions around treatment options as well as the ESO process.4 5 6
…we could have taken her out and done some nice things and made some nice memories rather than fighting every day to speak to other doctors.
The external second opinion process
This section covers:
- Providing clarity to families about the ESO process before an ESO is sought
- Developing the ESO request
- Collaborating with other groups
- Developing a framework of understanding using three scenarios
- The form and content of the ESO report
Providing clarity to families about the ESO process
When children begin their treatment, families should be made aware of the decision-making process within their related specialty. This should include the possibility of requesting an ESO. In explaining the ESO process it is important to recognise the following:
- Requesting an ESO is the responsibility of the named consultant in consultation with the treating MDT and family. The named consultant is the person responsible for coordinating and leading care.
- Requesting an ESO may take various forms. In some specialties ESOs are routinely sought through inter-hospital MDTs or national advisory panels, while less frequently, ESOs are sought from individual consultants. In each of these situations, children and families should be made aware at the outset that these processes are regarded as usual good practice.
- Transparency and the management of expectations is vital. The treating team should explain the limitations of the ESO process at the outset:
- Some treatment recommendations by the ESO provider will not be possible due to either resource limitations or a lack of evidence of the benefit of suggested novel therapies.
- It won’t always be possible to request an ESO if the treatment being explored is very new and experimental and there isn't enough evidence or information to enable an informed opinion to be made (see Unlicensed or experimental interventions). It may also be the case that there isn't a medical team who would be able to carry out that treatment.
- The ESO provider may recommend treatment options that the treating MDT or family do not agree with.
- It is hard to know how long an ESO will take and this will vary from child to child. It will take time to arrange for the healthcare professional providing the ESO to visit the child and write the report and each child will have different needs. This may mean decisions around treatment will be delayed.
- Any ESO will relate only to the specific question that is asked. Healthcare professionals providing ESOs will not be involved in ongoing decisions around day-to-day care.
Developing the ESO request
The following should be considered and agreed when the appropriate healthcare professional formulates a request for a second opinion:
- Understanding the views of the child and family. A family advocate and/or a faith leader may assist with this. If the child can consent to their treatment (i.e. they are Gillick competent) their views must be at the centre of plans when considering whether to request an ESO. GMC guidance states that young people who have the capacity to consent should be encouraged to involve their families in making important decisions.
Children and young people will feel listened to, valued and part of the solution if they can understand the information that is given to them.
- The referral letter. In all circumstances the referral letter should make mention of the family’s priorities. When an ESO is sought from an individual clinician in a different hospital the family might be involved in drafting the referral with their child’s consultant. This is less likely to occur in routine inter-hospital MDT/national advisory panel processes. It is good practice for the family, the child’s GP, and other relevant teams to be copied into correspondence in all referrals.
- The question.
- The context of why the opinion is being sought; clear terms of reference and discrete questions will greatly facilitate the work of the ESO provider and enhance the quality of the final report.
- The depth of analysis required by the ESO, whether face-to-face, virtual or case note review.
- The agreed time frame for production of the ESO report.
- Who to approach. The healthcare professional that is sought to provide the ESO should be decided though consensus between the family and the treating MDT and it is important for the named consultant to let the family know of any existing relationship between the treating team and the professional asked to provide the ESO. The selected professional should meet GMC or other relevant regulatory guidance.
- Whom to inform: Senior management within the health organisation caring for the child should be informed when an ESO from an individual clinician is sought from another organisation.
The family advocate
The family advocate is a named point of contact who can provide information to the family on the ESO process, and who can signpost them to sources of support. The family advocate should be identified through having a certain skill set rather than a defined professional background and this will vary depending on local circumstance. Advocates may come from the voluntary sector or the NHS.
The desired characteristics of the family advocate should include an individual who:
Collaborating with other groups
During the decision-making process, healthcare professionals and families may wish or need to involve other stakeholders; these may include the team around the child:
- Children’s community nursing (CCN) team. Many children with complex health needs are closely integrated with community children’s services. Even when a child has spent a prolonged period in hospital, it is very likely that the CCN team have kept closely in touch with the family. CCN teams have a unique health professional insight into the child as a family member and not just as a patient, which brings a greater understanding to the MDT.
- School. The child’s teacher provides valuable information on the child’s educational requirements, in addition to another viewpoint on their usual daily activities.
- Local hospital, palliative care, and hospice teams. The local hospital team will usually have had a longer relationship with the child and family than the tertiary service. Palliative care clinicians and hospice teams may offer advice and support to families and healthcare professionals relating to the care of children with complex conditions.
And other bodies:
- Clinical Ethics Advisory committee (CEAC). The CEAC can provide an opportunity for the family and/or healthcare team to gain an objective ethical view of the facts that can help evaluate and inform decisions around treatment.
- Integrated Care Systems / Health Boards. Local care systems serve an increasingly important role in health and social care provision for children with medical complexity. Early involvement of emerging ICS networks may advantageously facilitate a proactive approach to care planning.
Developing a framework of understanding
It is important for health professionals to clearly explain to the family the various outcomes that may be forthcoming from an ESO. These include:
- Outcome A: The treating MDT and family agree with the ESO
- Outcome B: The family does not agree with the ESO while the treating MDT does
- Outcome C: The family agree with the ESO while the treating MDT does not
All parties involved in the decision to obtain an ESO should be aware that the provision of an external opinion can bring clarity or add complexity. In all scenarios it is important to explain that the treating team will work with the family to get back to a process of shared decision-making. Resolution through mediation may be necessary or, on rare occasions, the court system may be necessary.
Expectations on how each outcome might be managed should be explored before the ESO is sought rather than wait until the second opinion is received. Further detail around this is set out below:
|Outcome A: The treating MDT and family agree with the ESO|
Suggested areas for action:
|Outcome B: The family does not agree with the ESO, while the treating MDT does|
Disagreements in decision making usually takes two forms. Either:
Suggested areas for action:
All opinions received should be considered in the context of the child’s best interests. If there continues to be disagreement around the best course of action, an application to the Courts should be made.
|Outcome C: The family agree with the ESO, while the treating MDT does not|
The treating MDT does not agree that the ESO recommendations are ‘reasonable’ or in the best interests of the child. Even when these appear to be met, the treating MDT may feel unable to deliver the ESO recommendations due to local moral discomfort. In such a scenario the MDT should explain to the family why they cannot accept the ESO’s recommendations and how they propose to move forward.
The next steps might include:
If no other service wishes to deliver the proposed course of treatment, then the question of what is in the child’s best interest needs to be re-explored. This could occur through a request of a third opinion along the same principles outlined in this document. Engagement of a third party may facilitate discussion; for example, a family advocate, palliative care team, a local clinical ethics advisory committee (if this has not already taken place), or an independent body such as an external mediation service.
If there continues to be disagreement around the best course of action, an application to the Courts should be made.
The form and content of the ESO report
The child’s named consultant (and their family advocate) should share and discuss the ESO report with the family. The report should avoid abbreviations and be written in plain English, and/or contain an accompanying lay summary. The ESO report becomes part of the child’s case record.
If there are any remaining ethical questions which arise from the ESO, then ethical advice should be sought as soon as possible from the health organisation’s clinical ethics advisory committee.
Providing an external second opinion
This section covers:
- Who should provide ESOs
- The ESO request
- Competencies of the opinion giver
- Duties of the opinion giver
- The ESO report
In paediatrics, the healthcare professional giving the ESO has a duty to respect the child’s welfare as paramount and to act in the child’s best interests.7 Importantly, the duties and expectations of a healthcare professional (or MDT/national advisory panel) who provides an external second opinion are the same as the primary care giver and are clearly set out in General Medical Council professional guidance. Those who give ESOs will routinely support the principle of shared decision making that underpins good medical practice.
Who should provide ESOs
As noted in the clinical context section of this guidance, ESOs occur on a regular basis within paediatric specialties in a variety of ways. Specialty MDTs across tertiary centres consult each other on the clinical management of children with complex needs, and national expert advisory panels advise on rare conditions. Both inform usual practice.
On a less frequent basis, the child’s treating MDT will request an ESO from an individual healthcare professional. The same governance considerations exist for an ESO provided by an inter-hospital MDT/national advisory panel as for that provided by an individual healthcare professional.
One of the challenges for individual healthcare professionals who provide ESOs is the concern that they may not be independent from the team requesting the opinion. This view was clearly expressed when listening to the views of families. Given the limited pool of available healthcare professionals able to support this work, it would be prudent to remain pragmatic with assuring independence. In such circumstances, an ESO provided via an inter-hospital MDT or national advisory panel process may in part address challenges of bias since the review of a case by a group of peers may likely provide a more dispassionate and objective view of the facts than a review provided by an individual acting alone.
Healthcare professionals providing an ESO have a duty to support transparent communication with families and to maintain a neutral position in the decision-making process. Further specific recommendations related to the responsibilities of other bodies (including professional bodies and paediatric subspecialty groups) to provide a pool of professionals able to undertake such work are described in the recommendations.
The ESO request
An example of an ESO request template can be downloaded below for local interpretation. It is very important that there is complete clarity in terms of:
- The question that is being asked: Clear terms of reference and well-defined questions will improve the quality of the final report. The time frame in which the report is required should also be set out.
- Who is requesting it: There should be a clear point of contact to facilitate transfer of information and arrangement of meetings with the family and the team around the child, where necessary. This will usually be the child’s named consultant.
- The understanding and expectations of the patient and/or family of the ESO process: the request for an ESO should always describe what discussion has occurred with the child, if they have capacity, and the family. Ideal practice is that the request for the ESO from an individual clinician comes jointly from the family and the child’s consultant.
Competencies of the opinion giver
As well as fulfilling the standards and competencies described by the GMC (see section covering regulatory professional framework), healthcare professionals providing ESOs should:
- Possess relevant knowledge and training to advise on the case in question.
- How to assess: current GMC or equivalent (if specialist opinion can only be provided from overseas) registration, including annual appraisal and five-yearly revalidation; review of up-to-date curriculum vitae that demonstrates qualifications, professional training, scientific publications, current employment; membership of a professional body; subspeciality experience relating to case in question.
- Possess experience as demonstrated by active engagement in relevant clinical practice.
- How to assess: review of number of years of relevant clinical appointment in up-to-date curriculum vitae (with a minimum of five to 10 years dependent on speciality and circumstances); membership of a professional body.
- Possess relevant other skills e.g. timekeeping, report writing, awareness of regulatory responsibilities/ judicial process/ best-interest decision making.
- How to assess: review of previous ESO/expert witness work and courses attended in up-to-date curriculum vitae; membership of a professional body.
- Be transparent from the outset in terms of declarations and possible (potential or actual) conflict of interests. For example, remuneration, issues of probity, current investigations.
- Be independent of family and primary opinion giver. This may be challenging in paediatric subspecialty practice. It is inevitable that in smaller specialties consultant colleagues may know each other and indeed some familiarity in the way teams operate might be regarded as beneficial. Transparency is the key.
- How to address: use of inter-hospital MDTs/ national advisory panel processes, empowering healthcare professionals to make declarations of conflict of interest.
The responsibility to ensure that the second opinion giver is competent to give that opinion is jointly held by the organisation requesting the ESO and the organisation employing the ESO provider.
These principles apply in the contexts of an MDT-based and national advisory panel-based ESO. Responsibility falls to the chairperson of that meeting to ensure that the group has an appropriate governance framework to provide an ESO.
Duties of the opinion giver
In carrying out their duties the healthcare professional providing the ESO should consider:
- Reading and reviewing all relevant clinical documents (patient records, investigation results, imaging).
- Determining the views of those close to the child. This might include the team around the child, the child themselves, and the family. Any approach to the child and their family should be planned with the treating team and take place in a suitable private setting. Seeking the views of those close to the child might entail:
- identification of key family members
- finding out the child and family’s understanding of the key issues
- awareness of pre-existing documented wishes
- exploring the family’s main concerns
- considering the family’s cultural and religious needs.
- Personally examining the child (if appropriate to the clinical situation). For example, in the context of an ESO being sought to advise on limitations of treatment or life sustaining treatment, it would be expected that the healthcare professional giving the ESO would:
- liaise closely with the primary medical team
- examine the child
- speak to the child’s family.
The above would not generally be expected for routinely sought ESOs through inter-hospital or national MDT consultations.
The ESO report
ESO reports should follow a standardised format dictated by the terms of reference of the advice sought. An ESO from an individual healthcare professional should be clearly dated, state the name of the professional, their professional background, and relevant training and experience to the case.
The opinion provider should also consider the following:
- The report’s sole purpose is to answer the question that is posed. The provided advice should be objective, unbiased, and the assumptions on which it is based stated and, where possible, referenced. It should contain sufficient detail to explain and justify the conclusions drawn.
- The ESO report should not express the author’s personal political, religious, or moral beliefs.
- Advice contained within an ESO report should give consideration regarding what is reasonable. For example, treatment recommendations should consider resource constraints such as funding restrictions or lack of availability of intensive care beds/community resources. Decisions about what treatment can be offered should be based on agreed local and/or national policy, and NICE guidance.8
- The ESO report becomes part of the patient’s case record. Therefore authors should be mindful that their report (along with ESOs from other professionals) might appear as material evidence in subsequent judicial settings, their identity might be made public, and that they, in exceptional circumstances, might be asked to act as witnesses themselves should court proceedings advance.
- ESO reports should always comply with UK Data Protection legislation (which is currently the General Data Protection Regulation (GDPR) and the Data Protection Act 2018), information governance principles and the NHS Code of Confidentiality.
- ESO reports should be written in plain English with any abbreviations or medical terminology explained so that the family understands. They should address the specific questions posed in the request, and if possible any concerns raised by the child and family. Ideally the family should be invited to discuss the report in a meeting where any questions or points of clarification could be explored.
Key terms and definitions
- List of key terms and definitions
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 above table for more details 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 www.england.nhs.uk/shared-decision-making/
- 2 adc.bmj.com/content/104/5/413
- 3 www.ncbi.nlm.nih.gov/pmc/articles/PMC3401948/
- 4 www.togetherforshortlives.org.uk/resource/a-guide-to-childrens-palliative-care/
- 5 Sidgwick P, Fraser J, Fortune P, et al. Parallel planning and the paediatric critical care patient. Archives of Disease in Childhood 2019;104:994-997.
- 6 www.chelwest.nhs.uk/services/childrens-services/neonatal-services/links/Practical-guidance-for-the-management-of-palliative-care-on-neonatal-units-Feb-2014.pdf
- 7 Larcher V, Craig F, Bhogal K, et al. Royal College of Paediatrics and Child Health. Making decisions to limit treatment in life-limiting and life-threatening conditions in children: a framework for practice. Arch Dis Child 2015; 100 (suppl):s2-3
- 8 www.gmc-uk.org/ethical-guidance/ethical-guidance-for-doctors/treatment-and-care-towards-the-end-of-life/decision-making-models