Advance care planning (also referred to as ‘anticipatory care planning’) engages patients in their own care decisions by helping them share personal wishes and goals for future care in case of serious illness and loss of capacity (Sudore et al, 2017). It encompasses discussing beliefs, values, feelings, and social circumstances to help them live and die the way they would like (Gold Standards Framework, 2018). In the UK, at least 86 000, and potentially up to 99 000, children and young people (CYP) with a life-limiting or life-threatening condition may benefit from advance care planning; this number has approximately doubled in under a decade (Fraser et al, 2020; Together for Short Lives, 2023).
Health professionals value advance care planning and attempt to engage relevant stakeholders in the discussion and documentation of care planning to understand the wishes of CYP and their parents (Fahner et al, 2021). Previous research (Hughes et al, 2018; Basu et al, 2021; Hughes et al, 2022) identified the potential for misperception of advance care planning by non-professionals and the important role of communication in the process. However, it is not known how far health professionals could influence this misperception, the support mechanisms and training opportunities they would like, or the range of different professionals involved in the care planning process.
Different studies have focused on advance care planning from the perspective of health professionals (Basu et al, 2021), parents and caregivers (Fried and O'Leary, 2008), patients (Wiener et al, 2022), and all three groups (Hughes et al, 2022). As health professionals often lead the advance care planning process (Knight et al, 2020), their role is pivotal in explaining the discussion and documentation of wishes. However, there remains a gap in fully understanding their influence when initiating the process, the range of barriers and facilitators to initiating and discussing advance care planning, and the involvement of professionals in the care planning process for CYP (Hein et al, 2020; Carr et al, 2021). This study aimed to understand advance care planning for CYP from a professional perspective to establish these facilitators and barriers and how to inform the professional role during the care planning process with CYP.
Research aim and objectives
The research question was: ‘What are the views of health professionals of the advance care planning process with children and young people?’ The objectives were to identify:
- What health professionals understand by advance care planning and how they use it
- The barriers and facilitators to implementing and using advance care planning with CYP and their families.
Methods
The study team created a Google Forms questionnaire and tested it with health professionals (n=28) to help shape the language and layout. The test group was recruited randomly from organisations of clinical members of the study team and comprised trainee paediatricians (n=17); paediatricians (n=6); specialist paediatricians (n=2); and regional lead nurse, hospice staff, consultant (n=1 each). The questionnaire comprised tick-box questions, multiple response questions, and free-text questions, and was expected to take about 10 minutes to complete (see Box 1).
Box 1.Elements of the survey questionnaire
- Demographic/professional role information
- What do you understand by the term ‘advance care plan’? (Free text response)
- What indicators do you think should trigger discussions about advance care planning? (Choose one or more options)
- What advance care planning documentation do you currently use? (Choose one or more options)
- Which different professions (job roles) do you know are currently involved in discussing/documenting advance care plans? (Free text answer)
- How confident do you feel using advance care plans? (Choose one option)
- Which different professions (job roles) do you think should be involved in discussing/documenting advance care plans? (Free text answer)
- What training around advance care planning is available to you (Choose one or more options)
- What helps you, or would help you, to complete an advance care plan? (Free text response)
- What makes it difficult, or would make it difficult, for you to complete an advance care plan? (Free text response)
The questionnaire was disseminated through a professional network across Northwest England as part of a self-selection, purposive, convenience sampling approach. This method was chosen to reach a wide range of participants over a large geographical area and was deemed suitable for the research topic, having been used to explore similar issues in health care (Ball et al, 2013; Hugelius et al, 2017). The inclusion criteria were that someone needed to be working with CYP who had a life-limiting or life-threatening condition and should either already being involved or could potentially be involved in the advance care planning process.
Data collection initially took place for 4 weeks in November 2021. A second period of data collection ran from mid-January until the end of February 2022 to increase responses. To avoid duplication, the questionnaire was redistributed with advice that previous respondents should not complete it a second time. Data were analysed thematically by hand by BH, who has a PhD and research experience in qualitative data collection and analysis. Data and findings were shared across the study team. Thematic analysis was used to help categorise data into themes in a systematic and rigorous way (Attride-Stirling, 2001; Silverman, 2014). Microsoft Excel and Word were used to store and organise data.
Ethics
The questionnaire was not intended to identify personally sensitive issues or concerns or raise any strong emotions. Participants had to give their consent prior to completing the questionnaire and the participant information sheet stated that responses would be anonymised. Data were handled, processed, and stored in compliance with the Data Protection Act 1998 and the General Data Protection Guidelines (GDPR) 2018. Approval for the study was gained from the main author's University ethics committee on 1 July 2021.
Findings
A total of 122 questionnaires were completed and included in the study. See Table 1 for demographic details of participants.
Table 1. Participant demographic details
| Demographics | Number of participants (%) |
|---|---|
| Age range (years) | |
| 20–29 | 16 (13.1%) |
| 30–39 | 43 (35.2%) |
| 40–49 | 34 (27.9%) |
| 50–59 | 23 (18.9%) |
| 60+ | 5 (4.1%) |
| Prefer not to say | 1 (0.8%) |
| Gender | |
| Female | 99 (81.1%) |
| Male | 20 (16.4%) |
| Non-binary | 1 (0.8%) |
| Prefer not to say | 2 (1.6%) |
| Ethnicity | |
| African | 2 (1.6%) |
| Any other Asian background | 5 (4.1%) |
| Any other White background | 7 (5.7%) |
| Arab | 5 (4.1%) |
| Caribbean | 1 (0.8%) |
| Indian | 2 (1.6%) |
| Pakistani | 1 (0.8%) |
| White and Black Caribbean | 2 (1.6%) |
| White British | 92 (75.4%) |
| White Irish | 2 (1.6%) |
| Prefer not to say | 3 (2.5%) |
| Organisation | |
| Hospice | 10 (8.2%) |
| NHS | 111 (91.0%) |
| Other charitable organisation | 1 (0.8%) |
| Job role | |
| Nurse | 62 (50.8%) |
| Trainee | 24 (19.7%) |
| Consultant | 8 (6.6%) |
| Hospice staff | 5 (4.1%) |
| Paediatrician | 13 (10.7%) |
| Healthcare assistant | 4 (3.3%) |
| Advanced clinical practitioner | 1 (0.8%) |
| Allied health professional | 1 (0.8%) |
| Junior clinical fellow | 1 (0.8%) |
| GP | 1 (0.8%) |
| Play and wellbeing worker | 1 (0.8%) |
| Transition worker | 1 (0.8%) |
Five themes were constructed by grouping together similar responses to individual questions.
Theme 1: Understanding of advance care planning
This question allowed for multiple responses and generated nearly 300 individual answers, suggesting health professionals identified advance care planning as having various elements (see Table 2).
Table 2. Themes of advance care planning identified by professionals
| Elements of advance care planning | The number of health professionals who reported this |
|---|---|
| Wishes/plan/decisions/preferences/preparation | 59 |
| End-of-life care/palliative care | 39 |
| A caring element/care plan | 28 |
| Treatment/intervention | 27 |
| Parallel planning | 19 |
| Involves/is for children and young people | 16 |
| Involves/is for adults/parents/family | 16 |
| Involves/is for professionals | 14 |
| Legal/compulsory element | 10 |
| Support | 7 |
| Communication | 4 |
| No answer/answer lacks clarity | 2 |
The most popular terms used to define advance care planning included an element of planning, providing care, and discussion of wishes. However, nearly a third (n=39; 32.0%) of health professionals felt that advance care planning focused on end-of-life care. Furthermore, although most health professionals recognised advance care planning as not legally binding, a relatively small number (n=10; 8.2%) mentioned a legal basis to advance care planning or believed it had a compulsory element to it:
‘[An advance care plan is a] legal document that states patient's wishes.’
Participant 56
Some definitions included that advance care planning was part of the parallel planning process whereby patients and their family could record wishes for life as well as death. These health professionals recognised the intricacies around care planning:
‘[An advance care plan is a] document that includes the complexity of their situation to prevent them having to retell their story … [but] allowing them [patients and family, to] concentrate on making the most of living time.’
Participant 94
Over a third (n=44; 36.1%) of health professionals felt the process should involve key stakeholders: CYP (n=16; 13.1%), their family (n=16; 13.1%), or health professionals (n=14; 11.5%). Yet there was no consensus that care planning should involve all these individuals. Indeed, most of the people who responded to this question on the questionnaire mentioned only one of these groups and did not identify that advance care planning can benefit more than one of them. As a whole, health professionals showed some understanding that an advance care plan was a ‘complete’ plan, which recognises the comprehensive nature of care planning. However, there were mixed views of what this plan should include and who would be the main beneficiaries.
Theme 2: Advance care planning in practice
Health professionals felt multiple triggers should initiate the care planning process: the most popular (n=489 total responses) were a change or deterioration in the illness/condition of the patient (n=120); when the patient initiates the conversation (n=102); the diagnosis or an illness/condition (n=99); a change in the patient's personal circumstances, such as the hospitalisation or death of a relative/friend (n=80); or the routine review of the patient (n=75).
Few health professionals identified taking a cue from the family (n=2); any appropriate time (n=1); or if it has never previously been discussed (n=1). Two health professionals recognised a pre-emptive element to advance care planning by indicating it should be initiated prior to the birth of the child if there is a new diagnosis or if the child is likely to die soon after being born:
‘[Advance care planning should be discussed when] a baby [is] born who has a condition not compatible with life.’
Participant 26
A variety of documentation was reportedly used across the region. The most popular paperwork was the CYPACP and/or ReSPECT forms (n=64). The Child and Young Person's Advance Care Plan (CYPACP) documentation was devised in the UK to provide a child-centred, easy-to-use, standardised, and consistent format for recording wishes (Child and Young Person's Advance Care Plan Collaboration, 2023). This document is supported by the ReSPECT form (Recommended Summary Plan for Emergency Care and Treatment), which summarises personalised recommendations for someone's clinical care in a future emergency in which they do not have capacity to communicate their choices (Resuscitation Council UK, 2023).
Other documentation used included the organisation's own paperwork (n=1), symptom management care plans (n=1), a local pathway (n=1); the ones in the EMIS clinical software system (n=1); CYPADM (Children and Young People Acute Deterioration Management plan) (n=1); and NWNODN (Northwest Neonatal Operational Delivery Network palliative care plans and guidelines) (n=1). However, an important finding was that a significant proportion of health professionals (n=49; 40.1%) did not know what advance care planning paperwork was used in their organisation.
Findings also revealed the low confidence of health professionals when using advance care planning with CYP (see Figure 1). On a scale of 1 to 5, where 1 was the least confident and 5 was the most confident, 40.2% of health professionals felt confident (scores 4 and 5) about using advance care planning but 27.9% did not feel confident (scores 1 and 2).
Theme 3: Professionals involved in advance care planning
When asked which professionals were involved in discussing and documenting advance care planning, a total of 330 responses were provided. The most identified professional job roles were consultants (n=66), nurses (n=36), doctors (n=24), hospice staff (n=21), community nurses/nursing team (n=19), the hospice/community palliative care team (n=19), the specialist nurses/nursing team (n=16), and paediatricians (n=16). Some health professionals recognised advance care planning can begin prior to birth, with neonatal teams (n=2) and midwives (n=2) being part of the care planning process. Other responses identified the importance of allied health professionals, such as dietitians, (n=1) and staff involved with complex care packages (n=1). Professionals without clinical training were also recognised as important for advance care planning: social services/social worker (n=7); education (n=3); social care/care staff/care agencies (n=4); careers (n=1); the NHS Trust Inclusion Service (n=1); and religious leaders (n=1). Consequently, health professionals recognised advance care planning as a multidisciplinary process, although only six responses explicitly mentioned this (Table 3).
Table 3. Number of health professionals currently identified as being involved in advance care planning
| Number identified as being involved in the advance care planning process | How many health professionals stated this |
|---|---|
| 1 | 24 |
| 2 | 28 |
| 3 | 24 |
| 4 | 16 |
| 5 | 12 |
| 6 | 2 |
| 7 | 1 |
| 8 | 1 |
| 9 | 0 |
| 10 | 0 |
| 11 | 1 |
| 12 | 1 |
| Multidisciplinary team | 6 |
| No answer/don't know | 6 |
There was also a feeling the multidisciplinary team (MDT) could be wider than it is currently, with the following professions suggested as important additions: ambulance service, pharmacists, mental health services, registrars, school nurse, fetal medicine specialists/teams, and obstetricians.
Theme 4: Training
Health professionals indicated a range of training was available to them (Table 4). However, 72 participants (59%) said there was either no training available for them or they did not know what training existed.
Table 4. Advance care planning training currently available
| Training health professionals identified as available to them | Number of health professionals who identified this |
|---|---|
| Online | 31 |
| Face-to-face | 17 |
| Training related to a specific illness/condition | 11 |
| Training delivered by someone I know | 10 |
| Training delivered close to where I work | 10 |
| Training can be arranged with other professionals if needed | 5 |
| Training delivered by someone I don't know | 5 |
| Training delivered a distance from where I work | 4 |
| Had training on a course/teaching session | 3 |
| Training which is affordable | 3 |
| Training which is expensive | 3 |
| Never completed training | 2 |
| CYPACP website | 1 |
| Online training is available for adults but not paediatrics | 1 |
| Currently rolling out a training programme across the Northwest for neonatal units | 1 |
| Don't know/no training available | 72 |
Professionals indicated they would like a choice of training delivery options. The most widely requested were face-to-face (n=97; 80.0% of participants), online (n=80; 66.0%), delivered close to where they worked (n=64; 52.5%), affordable (n=57; 46.7%), and related to a specific illness/condition (n=37; 30.3%).
Participants felt training should include examples of completed forms and what should, or should not, be included in specific sections of documentation to help them understand the process and record wishes:
‘Seeing consultants fill in [advanced care plans]/having discussions with regards to it more readily will help me gain confidence in doing it. Currently, I find that it is done only when patient is very unwell and therefore most often done in inpatient settings.’
Participant 65
Some health professionals suggested mentoring and training from experienced colleagues could form part of this training and indicated the value of colleagues who know how to use advance care plans. Others stated further information about the child's condition would inform discussions with patients and their family:
‘[I would like] training and understanding of the exact meaning of what is written [on advance care plans].’
Participant 59
The feeling of not knowing where to access relevant training led to difficulties in initiating conversations around care wishes or how to take the conversations forward towards documentation:
‘[There is a complete] lack of training and therefore competence/confidence in this area.’
Participant 10
Therefore, training was felt to be a clear potential facilitator to initiating and using advance care planning but was frequently more of a barrier for health professionals.
Theme 5: Facilitators and barriers to initiating and using advance care planning
Professionals reported almost as many barriers (n=165) as facilitators (n=177) to initiating and using advance care planning (see Table 5 for a summary of these).
Table 5. Facilitators and barriers to completing an advance care plan
| Facilitators | Barriers |
|---|---|
| Support/collaborative working | Communication and support/collaborative working |
| Skills development/personal qualities | Skills development/personal qualities/experience |
| Knowledge/understanding/information | Knowledge/understanding/information |
| Professional/organisational issues | Professional/organisational issues |
| Relationships | Patient/family-related |
| Training | Training |
Professionals felt clear and up-to-date information and knowledge about advance care planning and patients would help facilitate discussions and record wishes:
‘[I would like] information [that is] clear and concise [and] easy to access.’
Participant 70
Organisational and work-related issues, such as available information about existing services, were identified as barriers to being involved in advance care planning. The most frequent response (n=10) was the lack of resources or time available, either in terms of incorporating it with other demands of the job or ensuring advance care planning is completed quickly enough:
‘[There is rarely] sufficient time to complete [advance care plans] before deterioration [of the patient] has happened.’
Participant 94
Additional barriers included conflicting professional relationships or unavailability of colleagues:
‘[It would be useful to have] support around building relationships to have the difficult conversations and an awareness of what support is available to have meaningful discussions.’
Participant 35
Similarly, health professionals identified the importance of having the professional skills and personal qualities to engage colleagues, CYP, and families in advance care planning discussions:
‘[A particular challenge of advance care planning is] the highly emotional level of the discussion [and] the lack of knowledge in the approach.’
Participant 25
These factors, combined with a perceived low level of support from colleagues, meant some health professionals lacked familiarity with advance care planning. This was compounded by a feeling of being excluded from the process by late referrals and mixed messages from colleagues, which impacted relationships with families:
‘[Advance care planning is difficult] when you are brought in at the last moment and you haven't been involved in any of the discussions etc.’
Participant 24
Generally, health professionals felt information, knowledge, and understanding of the advance care planning process and patients and their families were important facilitators of the process. Similarly, professional and organisational cultures can facilitate advance care planning or create unnecessary barriers.
Discussion
Definitions of advance care planning were mixed but generally corresponded to those in policy and included key elements of planning, providing care, and embracing the wishes of CYP and families (National Institute for Health and Care Excellence (NICE), 2017; 2019). Some health professionals felt advance care planning focused on end-of-life care or palliative care. This finding expands previous research (Hughes et al, 2022), which highlighted a misperception of advance care planning among CYP and families, to understand that misperception is also present among health professionals. Misperceptions can impact the meaning and emphasis professionals attribute to the advance care planning process. Misperceptions about a legal basis to advance care plans also raise important ethical issues about their completion, implementation, and the consequences of not following them (McGlade et al, 2017; Martina et al, 2021).
Findings from this study correspond with previous research, which highlighted the variety of documentation as a potential barrier to advance care planning (Care Quality Commission (CQC), 2021; Hughes et al, 2022). A new finding from this study is that nearly half the participants were unsure what documentation was used in their organisation and how to complete it correctly. Some health professionals also lack information about the patient, their family, and available services to inform the planning process. These findings can impact on the effectiveness of communication between health professionals and their levels of confidence using advance care planning (Basu et al, 2021; CQC, 2021).
The advance care planning process can be facilitated with better training for health professionals (CQC, 2021; Warner et al, 2021; Carr et al, 2022) to develop knowledge and understanding and the sharing of information about CYP and families. Although training has improved recently (Martin and Beringer, 2019), a key finding from this study is the need for a range of relevant, affordable, and accessible training options to underpin professional knowledge and competence. Developing lines of communication and effective relationships (NICE, 2017; 2019; CQC, 2021; Hughes et al, 2022) within a larger and broader MDT can also facilitate advance care planning.
Strengths and limitations
The strengths of the study include the online questionnaire, which allowed ease of distribution and completion. The self-selection method of recruiting participants was subject to coverage and selection bias, which undermines the validity and interpretation of findings, but convenience and purposeful sampling was useful to reach relevant professionals. Participant anonymity provided reassurance they could be honest about their perceptions. These factors combined to generate a good sample size of participants.
There are several limitations to this study. Many health professionals were concentrated in job roles that may have provided a biased perception of advance care planning and could limit generalisation of findings. Similarly, the limited scope of professional job roles may have provided generalised findings, although participants were able to combine roles provided on the questionnaire or add their own job in a free text box. These roles on the questionnaire were provided by clinical colleagues and informed by the testing of the questionnaire but the researchers recognise the crossover of job roles and vagueness attached to roles may limit the precision of the findings. The small number of participants for some of the identified job roles may also limit overall findings. Nevertheless, this study shows a useful broad picture of professional views and provides a basis for further research to explore different job roles and grades within those jobs. The varied nature of responses can make it difficult to identify themes and synthesise information but this was minimised by careful sorting and coding of data and presentation of initial themes to colleagues.
Conclusion
Advance care planning is a complex and iterative process. Health professionals would benefit from additional training to minimise misperceptions of advance care planning and instil greater confidence in discussing and documenting wishes. More work is needed to provide a variety of training options at different levels of understanding and for different budgets. Standardised documentation would help reduce misunderstandings, increase confidence, and aid sharing of plans. A more flexible, innovative, and inclusive approach to advance care planning, will recognise the value of all professional roles in a larger MDT and ensure wishes are included and recorded effectively.
Further research is needed to understand training needs of different professionals who could be involved in advance care planning. An evaluation of existing training will also help consider how a competence-based framework can be used to guide future training and engage a more comprehensive MDT.
KEY POINTS
- Misperceptions of advance care planning are shared by health professionals and non-professionals
- An imprecise understanding of advance care planning by some health professionals might reflect their variety of views and experiences of the process, which could have implications the information for, and care of, children and young people, and their families
- The main facilitators for health professionals initiating and using advance care planning include access to a range of training opportunities; clear and consistent documentation that can be easily completed, understood, and shared; and a larger and more cohesive multidisciplinary team
- The main barriers to initiating and using advance care planning include time and resources, clarity of communication, and access to training
CPD reflective questions
- What is advance care planning? What information is needed to discuss and document advance care plans?
- What support and training are available for professionals in the area where you work around advance care planning?
- Consider communication between professionals and the impact on children, young people, and their families. What elements do you think are important for effective working relationships?
- What steps could you take to be more effective in initiating, discussing, and documenting advance care plans?