Article Text
Abstract
A growing number of children with life-limiting conditions (LLCs) are being cared for in paediatric critical care (PCC) settings. Children with LLCs admitted to PCC are at a high risk of developing complications and many die after prolonged admissions. Relatively few of these patients and their parents or carers have had documented discussions about their wishes for care in the event of a serious clinical deterioration before admission to PCC. There is a need for improved understanding of (1) how parents arrive at decisions regarding what is best for their child at times of critical illness and (2) the role of parallel planning and advance care plans in that process. This review examines the complexities of decision-making in children with LLCs who are admitted to PCC settings.
- intensive care
- multidisciplinary team-care
- palliative care
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What is already known?
Children with life-limiting conditions (LLCs) may benefit from the initiation of iterative parallel planning conversations from the point of diagnosis.
While there is an evident need to ‘hear the voice’ of our patients with LLCs, the consequences of parallel planning and advance care plans in children with LLCs are not fully understood.
What this study adds?
This review provides a detailed discussion of parallel planning in the context of children with LLCs admitted to paediatric critical care.
This review advocates for more children with LLCs being offered parallel planning prior to admission to paediatric critical care.
Introduction
The crude mortality rate of patients admitted to paediatric critical care (PCC) in the UK and Ireland has fallen progressively to 3.4% per annum in 2016,1 while the length of stay for patients who survive to discharge has remained the same.2 However, the prevalence of children with LLCs in the UK continues to increase,3 4 and children with LLCs who would have previously died early in their admission to PCC are now surviving much longer.2 4 Moreover, those who survive their PCC admission often have multiple future admissions that may also be prolonged and may ultimately result in death while receiving critical care.
Although parallel planning is regarded as the gold standard for children and young people with LLCs, there is currently very little evidence exploring the process of decision-making for parents and determining whether a documented advance care plan (ACP) adds benefit to clinical care. Some professionals express concerns that while an ACP invariably informs decision-making, it can also potentially become a source of conflict between children, families and their clinical teams. Little data exist on the numbers of children admitted to PCC who have taken part in parallel planning conversations or have an existing ACP in place.
This article explores the challenges and potential benefits of parallel planning and ACPs in managing children with LLCs admitted to PCC and suggests strategies for their improved utilisation in the future. Box 1 describes some of the key concepts discussed.
Glossary of key concepts
Life-limiting conditions (LLCs): Conditions for which there is no reasonable hope of cure and from which children or young people will die. Life-threatening conditions are those for which curative treatment may be feasible but can fail, such as cancer.22
Parallel planning: A term that describes an approach to discussing a range of potential outcome options for care when prognostication is uncertain. Parallel planning for potential survival, while also considering plans if deterioration or death occurs, can enable open discussion about wishes for care. It can allow the mobilisation of services and professionals to accommodate variable outcomes.22 It is important to state that this process is not solely centred on decisions about limitation of treatment.
Advanced care plan (ACP): A document that records a summary of the wishes of a child or young person and/or those with parental responsibility for them. An ACP will include options for treatment and care. It may also record whether the child’s resuscitation status has been discussed, and the outcome of that discussion. The document can cover recommendations about both specific treatments (such as clinically assisted nutrition) and approaches to care (such as whether or not a person would want to be taken to hospital in an emergency). The decisions made as part of this process are not legally binding.
Parallel planning: planning for the worst, hoping for the best
Paediatric parallel planning identifies potential social and healthcare related issues in the context of the individual needs of a young person with a LLC, with the aim of planning responses in anticipation of future events.5 It is an iterative process. In the context of paediatric practice, it involves a process of open discussion between patients, families and healthcare professionals regarding their wishes for future care in the event of a deterioration in health. As consensus is reached, the wishes of a child or young person and their family, as well as those of the multidisciplinary team (MDT), are recorded either in the medical notes or in a structured form, either as a template for detailed notes6 or as a summary document. The use of such forms remains inconsistent across PCC departments although the Recommended Summary Plan for Emergency Care and Treatment (ReSPECT)7 document is now widely adopted in many centres across the UK. One national survey of lead clinicians in UK PCC departments found that just over half had formal documents related to parallel planning in use within their Trust, while others were working towards developing documentation at the time of the survey.8
The parallel planning process should begin at diagnosis of an LLC. Discussions about likely illness trajectory (including clinical scenarios that may precipitate a change in baseline) ideally should not be deferred to when the child is admitted to a critical care setting.9 10 Improving parental understanding and knowledge of the condition in terms of what might be expected (deterioration, reversibility and recovery vs deterioration, ongoing decline and death) and explanation of the concept of parallel planning can facilitate decision-making in anticipation of critical points in the child’s disease progression.
The essence of parallel planning lies in the shared acknowledgement and management of hope and uncertainty. Those initiating parallel planning discussions should emphasise the importance that all eventualities are considered, perhaps best explained by ‘planning for the worst, while hoping for the best’. Parents report that maintaining hope is core to their role as carers for children with LLCs and acknowledgement of this is vital to assure families that the best interests of their loved ones are central to all considerations.11
While parallel planning is purported to assist decision-making, it is acknowledged there is much we are yet to fully understand about its impact on the family, and the outcomes of the process on the child’s healthcare.
Challenges that parallel planning presents for clinicians
National guidance on end-of-life care for infants, children and young people with LLCs by the National Institute for Health and Care Excellence in 201612 highlights parallel planning as a core element of palliative care. Planning in advance of critical illness, when the child is clinically stable, is difficult when there are choices to be made about whether or not to start or continue certain medical treatments. Such discussions are always sensitive and are reliant on detailed situational knowledge of the individual child and their family. Healthcare professionals principally strive to ‘do no harm’ in all patients, offering dignified and appropriate holistic care, while at the same time recognising death as a potential outcome in serious illness and progressive disease, and balancing the risks and benefits of each intervention. In the UK, a clear framework exists to guide clinicians in clinically and ethically complex situations when considering limitation of treatment.13
Common challenges faced by clinicians during the parallel planning process include the following: the complexity of the patient’s clinical condition, the significant time commitment required to properly meet the needs of the family, a misunderstanding of the role of paediatric palliative care services, a misplaced view that ACPs are purely linked to ‘do not attempt resuscitation’ decisions, and a lack of clarity about who should lead the discussion in children who are cared for by a large MDT group involving many clinical and allied health teams.14–16 Clinicians should not ‘hold an agenda’ entering parallel planning discussions. Preparation, consistent ‘messaging’, awareness of the family’s priorities and the use of plain language pays dividends in helping to avoid conflict and facilitating a productive meeting.
Initiating parallel planning and end-of-life conversations with patients and families of children with LLCs may be daunting for even the most experienced members of staff. Such conversations should be undertaken with empathy by committed, trusted professionals who have the motivation, time and emotional capacity to lead such discussions, as well as some expertise in both the active management of the child’s medical condition and the practicalities of palliation. Consequently, identifying the right person or team to initiate parallel planning conversations can sometimes be challenging. Subspecialty teams may see a child only once or twice a year and paediatricians in the local hospital may feel that they lack the disease-specific expertise to answer the parents’ questions. For the PCC team, conversations about future limitation of treatment can seem at odds with the prevailing narrative of active treatment.17 Simulation and advanced communications training may help the MDT develop the necessary skills to become more proficient in such conversations,18 but perhaps the most effective learning is gained through watching, listening and then reflecting on how an experienced colleague or mentor facilitates the conversation.
Challenges that parallel planning presents for families
The more clinicians understand the motivation for parents to engage in parallel planning, the better able they will be to support children with LLCs and their families in forming realistic goals of care. It should be acknowledged that parents’ and clinician’s views on the right way forward may not necessarily align.
Diagnosis of a LLC in one’s child impacts on the life of the whole family and many parents ‘push back’ against what they regard to be an assault on their lives.19 Parents may wish to exhaust all possible options for ‘treatment’ before feeling able to engage with thoughts about parallel planning. One qualitative study of children and young people with LLCs found that in families where ACP discussions were initiated early the majority wanted all options for care to be kept open, while essential decisions were often only made late in the young person’s illness.20 This study also found families were variably predisposed to engage in the parallel planning process, with many young people choosing not to be involved, preferring clinicians to provide clear recommendations. In another study, families who have experienced parallel planning reported that maintaining hope and optimising quality of life were their priorities, with a clear preference for an individualised, iterative approach to discussions.21 However, the lack of evidence surrounding the experience of parallel planning discussions and the use of ACPs by children with LLCs and their families means that there is much we are yet to truly understand about their positive and negative impacts on all involved. Decision-making is based on multiple factors: previous experiences, modes of communication, trust in care provider expertise, expectations, faith and culture to name but a few. It remains unclear from the limited literature that exists how such factors interplay, and whether families find these anticipatory discussions timely, helpful, threatening or empowering.
Parallel planning and PCC
It should be recognised that PCC units represent a unique setting for parallel planning conversations in that the patient population in question generally lacks decision-making and/or mental capacity due to their young age, severe cognitive impairment, or the obvious impediment to communication posed by intubation, ventilation and sedative drugs. PCC teams therefore usually have to have such discussions with those holding parental responsibility for the child or young person. However, the PCC environment may lack privacy and parents or carers, in their distraught state, may also not have capacity to make objective decisions that serve the best interests of their child.
It could be argued that a ‘best-case’ scenario would be that the parents of vulnerable children and young people with LLCs admitted to PCC would have taken part in parallel planning conversations supporting parental decision-making prior to escalation of care. Such conversations are more appropriately held in a place of the family’s choice, with a professional who has up-to-date knowledge of the implications of a PCC admission in the context of the child’s underlying condition. These discussions should aim to inform parents about the various trajectories and consequences of a potential PCC admission including the merits and burdens of predictable interventions, such as mechanical ventilation and circulatory support. Explaining the rationale for medical decision-making regarding limitations of treatment should their child become critically unwell can offer an important opportunity for parents or carers to ask questions and clarify their own understanding. While such discussions may or may not result in an ACP document, they should ideally lead to clearly articulated recommendations that inform the actions to be taken by the PCC team in the event of life-threatening illness.
For these reasons, PCC teams are well placed to be informed partners in parallel planning discussions and ACP development. They identify patients with LLCs and can recognise and explain the hazards that repeated admissions may bring to the quality of life of the child. When a child with an LLC is admitted to PCC without an ACP, the PCC team often leads on conversations with the family and the MDT to rapidly agree a workable understanding of expectations and best interests. The PCC team also has a responsibility to share the decisions made in those conversations at the time of discharge from PCC and ensure this is reflected in follow-up arrangements. Discharge paperwork should be comprehensive and record the outcome of significant conversations, and if no ACP is in place, include onward referral to the appropriate team for the consideration of ongoing parallel planning conversations. The PCC team might go further in making direct referrals, identifying a lead practitioner and arranging an MDT meeting (at which they may or may not be present), where the parallel planning process can be discussed more formally. In some cases, PCC teams develop close relationships with families over a number of years and in such circumstances the PCC team themselves may also contribute significantly to parallel planning discussions when the child has left the PCC.
Lastly, PCC teams recognise that in all cases the MDT must consider each case individually and act in the patient’s best interests, and that a previously agreed ACP may be revoked by the child or their family at a time of critical illness. In the final analysis though, it is often the PCC team who initiate limitation of treatment and negotiate a dignified death for patients with LLCs in a wide range of difficult situations.
Towards solutions: best practice
Early identification of patients who may benefit from parallel planning discussions that results in an ACP is important. Together for Short Lives have defined four categories of LLCs22 that help clinicians identify children with LLCs who may benefit from parallel planning conversations (figure 1).
In the context of an increasing population of patients with LLCs, we advocate that education relating to parallel planning discussions should be introduced into the undergraduate and postgraduate curricula. At present, despite recognition that palliative care input can support parents in their decision-making, referrals to paediatric palliative care teams are often still made late in the illness trajectory.23 Parallel planning should be considered routinely across the spectrum of healthcare providers supporting any individual child or young person: PCC, community, general and specialist paediatric MDTs, as well as primary care teams. Such practice might address the dichotomy between increasing numbers of patients with LLCs and the inadequate initiation and recording of discussions and decisions regarding wishes and expectations for future care. Cross-specialty liaison is crucial in achieving consistency of information for parents and a clinical consensus to guide management. Those who know the young person and family best and have the required skills and training in complex communication are ideally placed to initiate such conversations and capture the wishes for care in a document that will have validity and meaning for the patient and their family. Discussions are best led, over time and often multiple episodes, by a professional who knows the child and family well and with whom they have a relationship of trust.
Conclusions
Parents want to be supported in being the ultimate decision-makers for their child and for professional opinions to be given clearly and respectfully.24 Introductory parallel planning conversations may centre solely on generic information about possible patterns of deterioration. These conversations may lead to the development of an ACP although it is not uncommon for the first iteration of an ACP to omit mention of emergency management. Such detail should evolve over subsequent iterations as time and the illness trajectory progresses.24 The most meaningful ACPs truly describe the wishes of the patient and their family and are those developed by a clinician who knows their child well and whom the family trusts. It is important to recognise that the ACP is distinct from a ‘do not attempt resuscitation’ document and that if approached incorrectly, ACP conversations can be harmful and can erode trust between children, families and their clinical teams.
PCC teams are well placed to influence practice through their knowledge of the relative merits and burdens of intervention. They aim to work more closely with colleagues across the scope of paediatric practice to identify children with LLCs who may benefit from parallel planning conversations prior to subsequent episodes of critical illness requiring PCC admission.
An increasing awareness of parallel planning will ultimately enable more families to not only be informed about the healthcare scenarios they may face but also allow them to ‘have their voices heard’. Parallel planning should ideally be initiated before critical illness or medical instability occurs, perhaps even at diagnosis for some conditions. Such timely practice will provide all who routinely care for children with LLCs in critical care settings with opportunities to meet the needs of these vulnerable patients and their families.
References
Footnotes
Contributors PS initiated and wrote the first draft. All authors contributed to and edited subsequent drafts. The finalised text was agreed by all authors.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Patient consent Not required.
Provenance and peer review Not commissioned; externally peer reviewed.