JOURNAL OF PALLIATIVE MEDICINE Volume 17, Number 9, 2014 ª Mary Ann Liebert, Inc. DOI: 10.1089/jpm.2013.0374

Advance Care Planning: Challenges and Approaches for Pediatricians Emma Heckford, MBBS, MRCPCH, DipPallMed1 and Antonia Jane Beringer, PhD, MSc, BSc(Hons), RGN, RSCN 2


Background: There is increasing recognition of the value of advance care planning for children with lifelimiting conditions. It is important that we acknowledge and reflect on the challenges that this work presents in order to optimize practice. Objective: Our aim was to review advance care planning for children with life-threatening or life-limiting conditions (LTLLCs) in our local area. Methods: We conducted a retrospective case note review. Study subjects were from two National Health Service (NHS) Trusts in Bristol in the United Kingdom. Cases were identified from Child Death Overview Panel data. Forty-two sets of case notes were reviewed in relation to 20 children. Measurements included quantitative and qualitative review of advance care planning in relation to standards set by The Association for Children’s Palliative Care (ACT). Results: In 25% of cases there was no documented discussion with families about the approach to end of life (EOL). In 25% of cases there was no evidence of an advance care plan, and the content and accessibility of those that did exist was variable. Forty-five percent of families were not offered a choice with regard to location of care (LOC) in the last months of life and 50% were not offered a choice about location of death (LOD). Conclusions: We hope that acknowledgement of some of the challenges, alongside recognition of the clear benefits, of planning will help pediatricians to deliver this important area of care.



here is increasing emphasis on the value of advance care planning for children with life-threatening or lifelimiting conditions (LTLLCs).1–6 Indeed, The Association for Children’s Palliative Care (ACT; note that ACT has recently changed its name to Together for Short Lives [TfSL]), states that ‘‘Every child and family should be helped to decide on an end of life plan and should be provided with care and support to achieve this.’’7 In addition, it has been shown that facilitating discussions whereby families can identify realistic goals and make choices about end of life (EOL) care helps them to feel prepared,8–11 improves satisfaction with care,10,12,13 and improves bereavement outcomes.9,11,14 It is therefore of key importance that all pediatricians are equipped with the skills and support to confidently approach advance care planning. Methods

ACT advocates eight key goals to promoting optimal EOL planning (Table 1). Using these key goals as stan-

dards, we conducted a retrospective case note review of local practice. Cases were identified from Child Death Overview Panel data. Forty-two sets of case notes were reviewed in relation to 20 children (children may have had medical notes from two different NHS hospitals and/or community NHS notes from being seen in community clinics). Inclusion and exclusion criteria are shown in Table 2. Approval was obtained from the two NHS Trusts involved. Results

Demographic data are shown in Table 3. In line with 2005 Department of Health data,1 our data show the range of conditions from which children die span all areas of pediatrics and neonatology. Sixty-five percent of the children’s diagnoses were in ACT Groups III or IV, where treatment throughout life could be expected to involve palliative elements, and 75% of the children had diagnoses other than cancer.


Community Children’s Health Partnership, North Bristol Trust, Southmead Hospital, Bristol, United Kingdom. Faculty of Health and Life Sciences, University of the West of England, Bristol, United Kingdom. Accepted February 18, 2014.





Table 1. End of Life (EOL) Planning Key Goals, as Taken from Fifth ACT Standard (2007) Criteria 1 2 3

4 5 6 7

Professionals should be open and honest with families when the approach to EOL is recognized. Joint planning with families and relevant professionals should take place as soon as possible. A written plan of care should be agreed on including decisions about methods of resuscitation; emergency services should be informed. Care plans should be reviewed and altered to take account of changes. There should be 24-hour access to pain and symptom control including access to medication. Emotional and spiritual support should be available to the child and carers. Children and families should be supported in their choices and goals for quality of life to the end.

Only seven of the eight ‘‘key goals’’ are shown. The eighth goal is that ‘‘those managing control of symptoms should be suitably qualified and experienced,’’ but it was not felt realistic to identify this from the case notes.

Table 3. Demographic Data Diagnosis Metabolic 4 Oncologic 5 Complications of prematurity 2 Neurological 3 Cardiac 1 Syndromic/chromosomal 5 ACT group Group I (n = 7)

Life-threatening conditions for which curative treatment may be feasible but can fail, where access to palliative care services may be necessary when treatment fails (e.g., cancer, irreversible organ failure)

Group II (n = 0)

Conditions where premature death is inevitable, where there may be long periods of intensive treatment aimed at prolonging life and allowing participation in normal activities (e.g., cystic fibrosis)

Group III (n = 10)

Progressive conditions without curative treatment options, where treatment is exclusively palliative and may commonly extend over many years (e.g. Batten disease, mucopolysaccharidoses, muscular dystrophy)

Group IV (n = 3)

Irreversible but nonprogressive conditions causing severe disability leading to susceptibility to health complications and likelihood of premature death (e.g., severe cerebral palsy)

Open and honest discussions with families

Although it was clear from the notes that medical staff recognized that the child was approaching EOL, for 25% of children there was no evidence of a discussion about advance care planning with the family. Where there were outstanding investigations, ongoing elements of curative management (e.g., chemotherapy, bone marrow transplant, awaiting cardiac surgery), or prognostic uncertainty (rare/undiagnosed conditions, premature neonates) the clear likelihood that the child would not survive tended not to be discussed until a late stage (i.e., moments or hours before death).15 Written plans of care

Written advance care plans were seen in 75% of cases. Eighty-six percent of these were written among the medical records and 14% were on dedicated documentation. Where plans existed, 75% detailed resuscitation plans, 65% detailed plans for the child becoming more unwell, 25% included wishes during life, and 25% included wishes for after death. Fifteen percent of families initially requested full active treatment and

Table 2. Inclusion and Exclusion Criteria Inclusion criteria Age 0–18 Diagnosed with LTLLC condition prior to death Majority of medical care provided by local tertiary children’s hospital Death between October 2008 and March 2010 Home postcode local

Exclusion criteria Child not previously recognized to have LTLLC Child had LTLLC but died of entirely unexpected cause Majority of medical care carried out in another geographical area

LTLLC, life-threatening or life-limiting condition.

Age at diagnosis Antenatal 3 Birth–1 week 6 1 week–1 year 5 1 year–5 years 2 5 years–10 years 2 10 years–18 years 1 Not known 1 Age at death Birth–1 week 2 1 week–1 year 8 1 year–5 years 2 5 years–10 years 4 10 years–18 years 4 Time between diagnosis and death (Range 1 day–15 years) 9/20 < 6 month Cause of death Respiratory 7 Progressive disease/underlying diagnosis 11 then later moved to a more palliative approach, indicating the importance of reviewing families’ wishes over time. Supporting the choices and goals of children and families

Forty-five percent of families were not offered a choice about preferred location of care (LOC) during life. Where


given a choice about preferred LOC, most had no preference or chose the hospital (Fig. 1). Fifty percent of families were not offered a choice about preferred location of death (LOD). Where given a choice about preferred LOD, all except one family chose home or hospice in preference to the hospital (Fig. 1). Analysis of actual LOD showed that, where choices were made, it was possible to achieve them in 70% of cases. The exceptions were one family that changed their mind and two families where the reasons for not reaching the preferred LOD were unavoidable. Of those who were not offered a choice about LOD, 100% died in the hospital (90% in intensive care environments). We did not see evidence of specific discussions with children (50% were < 1 year old at the time of death). Communicating with children who are expected to die is clearly an important but separate topic.

FIG. 1.



Overall, standards of advance care planning were variable. There were some examples of exemplary planning but more often there was room for improvement. We outline some of the challenges below and suggest ways in which they may be overcome, so that families have the opportunity to be involved in choices about EOL care if they wish. Timely initiation of discussions with families

In pediatrics, timely recognition of the approach to EOL can be challenging for a number of reasons. Precise estimates of time remaining have been shown to be inaccurate and thus unhelpful, whereas a focus on predictions expressed in ‘‘days to weeks’’/‘‘weeks to months’’/‘‘months to years’’ may be more constructive.8 Additional uncertainty is created by the

Family preferences with regard to location of care (LOC) and location of death (LOD).


Table 4. Prompts for Initiation of End of Life (EOL) Planning, as Taken from Child and Family Wishes Advance Care Plan17,23 

Would you be surprised if this child died prematurely due to a life-limiting illness?  Would you be surprised if this child died within a year?  Would you be surprised if this child died during this episode of care?  Do you know what the child’s and family’s wishes are for the EOL? fact that some children have repeated episodes of clinical deterioration in which they look unwell enough that they might die. It is important to recognize that we do not need certainty to make plans and that families are able to appreciate the limitations of our ability to make predictions. The introduction of palliative care can seem daunting for parents and professionals. It can be helpful to acknowledge the difficult feelings for oneself and for the family, but also the importance of the conversation and what one hopes to gain from it. It is key to explain to parents that the primary goal of palliative care is to focus on the best interests of the child and his or her quality of life, and that curative and palliative approaches are not necessarily mutually exclusive.16 Suggested prompts for professionals to consider in initiating EOL discussions are shown in Table 4. It is sometimes possible to use parental cues, such as a comment that the child seems less well, as a stepping stone on which to build a conversation about plans for the future. Alternatively, at an appropriate time, EOL planning may be gently introduced by saying something along the lines of, ‘‘I can see that you are hoping for the best, but I wonder if you’ve had any thoughts about how you would like [name] cared for if he/she were to become more unwell.’’ Professionals may be held back by fear of upsetting families, making things worse or ‘‘getting it wrong.’’ We can be re-assured that families tell us that there is little that can be mentioned to them that they have not already considered and worried about, there is little that will upset them more than they have already been upset, and that discussing and sharing uncertainty, together with the opportunity to have some of their fears allayed, is usually a difficult but positive experience for them.18 Communication skills are key and honesty and sensitivity go a long way in helping parents to feel well supported.10–14 Ensuring plans are comprehensive and easily recognizable

Across the United Kingdom, guidelines and tools have been developed to aid advance care planning for children. Although the forms used to document these discussions vary by location, the key concepts are similar. These tools act as a prompt and a prop to the initiation of discussions. They are designed to facilitate discussions whereby families can identify realistic goals and priorities and make choices about EOL care. Key advantages to formalizing discussions in this way include ensuring that the outcomes of these discussions are easily identifiable in a standardized form, as well as updated and disseminated in a timely and appropriate way. The format of these templates encourages careful evaluation of the child’s best interests and reassurance about


ongoing care. They are highly individual and they help the family to know what to expect, how to deal with it, and whom they can call. They are not legally binding documents and their content can evolve over time as necessary. Such discussions have been shown to be helpful for both parents and staff. Even where families find discussions about appropriate levels of care difficult, it has been shown that they understand the need for this and almost all report feeling glad that they have undertaken them.19,20 Supporting the choices and goals of children and families

There is a real need to focus on ensuring that families are offered realistic choices, particularly in relation to LOD. Interestingly, it has been shown that it is the opportunity to discuss and plan LOD that families value most. Whether or not the ultimate LOD matches their previous choice is less important.9 Parents who plan and make choices are more likely to feel a sense of control, to feel prepared for the EOL stage, and to have less decisional regret in relation to LOD, regardless of whether the child died at home or not.10,21 Making plans has also been shown to be associated with fewer hospital admissions, fewer intubations, and fewer deaths in intensive care units.9 Conclusions

It is estimated that the numbers of children living with LTLLCs are higher than previously thought.22 It is also recognized that advancing technologies mean it is possible to sustain life in ways that were previously impossible. Consequently, it is especially important that decisions about EOL care are carefully thought through, with the best interests of the child at the forefront of this decision-making process. We hope that consideration of some of the issues and dynamics that arise when considering EOL planning, alongside recognition of the clear benefits of planning, will support pediatricians in their efforts to carry out sensitive, timely, and honest discussions so that the wishes of families can be facilitated at the end of their child’s life. Acknowledgments

EH and AB were responsible for the conception and design of the study; EH collected the data; EH and AB wrote the manuscript. This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors. EH research input was supported by an Early Career Researcher Grant from UWF Bristol. Author Disclosure Statement

No competing financial interests exist. References

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Address correspondence to: Emma Heckford, MBBS, MRCPCH, DipPallMed Community Children’s Health Partnership North Bristol Trust Westgate House Southmead Hospital Bristol BS10 5NB United Kingdom E-mail: [email protected]

Advance care planning: challenges and approaches for pediatricians.

There is increasing recognition of the value of advance care planning for children with life-limiting conditions. It is important that we acknowledge ...
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