Search

Objectives: To explore current practice and the role of UK care homes and Admiral Nurses in helping people living with dementia and their family carers prepare for end-of-life., Methods: We conducted an online survey with all UK Admiral Nurses (59% response rate) and a random sample of Gold Standards Framework accredited care homes in England and Wales (38% response rate). We used descriptive statistics to report survey findings., Results: While respondents commonly discussed the progressive nature of dementia with people living with dementia and family carers, they less frequently spoke to people with dementia or carers about the nature of dementia as life shortening, terminal, or a disease you can die from. Admiral Nurses highlighted that where service models reduced continuity of care, opportunities for ongoing discussion and developing relationships that supported these discussions were reduced. Admiral Nurses and care homes raised concerns about conversations being left too late, when the person with dementia no longer had capacity to engage. There was a high level of agreement with all European Association of Palliative Care and National Institute for Health and Care Excellence (NICE) statements presented regarding end-of-life care planning and discussions., Conclusions: Our survey of care homes and Admiral Nurses, combined with findings from our previous survey of UK memory services, increases our understanding of how services help people with dementia and family carers prepare for end-of-life. We found fragmentation across the service system, lack of continuity, and tensions regarding when these conversations should be initiated and by whom., (© 2020 John Wiley & Sons Ltd.)

Introduction: Despite preferences to the contrary, 53% of deaths in England occur in hospital. Difficulties in managing clinical uncertainty can result in delayed recognition that a person may be approaching the end of life, and a failure to address his/her preferences. Planning and shared decision-making for hospital patients need to improve where an underlying condition responds poorly to acute medical treatment and there is a risk of dying in the next 1-2 months. This paper suggests an approach to improve this care., Intervention: A care bundle (the AMBER care bundle) was designed by a multiprofessional development team, which included service users, utilising the model for improvement following an initial scoping exercise. The care bundle includes two identification questions, four subsequent time restricted actions and systematic daily follow-up., Clinical Impact: This paper describes the development and implementation of a care bundle. From August 2011 to July 2012, 638 patients received care supported by the AMBER care bundle. In total 42.8% died in hospital and a further 14.5% were readmitted as emergencies within 30 days of discharge. Clinical outcome measures are in development., Conclusions: It has been possible to develop a care bundle addressing a complex area of care which can be a lever for cultural change. The implementation of the AMBER care bundle has the potential to improve care of clinically uncertain hospital patients who may be approaching the end of life by supporting their recognition and prompting discussion of their preferences. Outcomes associated with its use are currently being formally evaluated., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.)

The Mental Capacity Act 2005, covering England and Wales, sets out formal tools to extend autonomy past the onset of incapacity that protect an individual's right to retain autonomy in decision-making. Despite policy drivers who encourage healthcare professionals to support advance decision-making for future care, very few individuals living with frailty engage in doing so. In this article, we interrogate these issues using data from a qualitative study of older people living with frailty, which engages with how those living and coping with varying degrees of frailty experience their situation day to day and their perceptions of planning for incapacity and decision-making. After critically evaluating the viewpoints of older people living with frailty and their carers, we assess the significance of their perceptions for the contemporary debates surrounding autonomy and how they align with the policy perspectives and the clinical practice of advance care planning. [ABSTRACT FROM AUTHOR]

Introduction: "Advance decision making" (ADM) refers to people planning for a future when they may lose the capacity to make decisions about treatment (decision making capacity for treatment or DMC-T). This can occur in a variety of physical and mental health scenarios. Statutory provision for ADM is likely to be introduced to mental health legislation in England and Wales, which will support planning for mental health crises. Conceptually, it may have particular utility for people with Bipolar Affective Disorder (bipolar) due to the pattern of rapid loss and then recovery of DMC-T during episodes of illness. Furthermore, ADM is recommended by clinical experts in bipolar. However, the empirical evidence base for ADM in bipolar is unclear. Therefore, a systematic review is required to collate available evidence and define future research directions. Methods: A PRISMA concordant systematic review of empirical literature on the use of ADM in bipolar. Results: We found 13 eligible articles which reported on 11 studies. Of the eligible studies 2 used a mixed methods design, 8 were quantitative descriptive studies and 1 was a randomised controlled trial. Outcomes of included studies fell into 4 categories: Interest in ADM, type of ADM preferred, barriers to completing ADM and impact of ADM. The available evidence suggests that people with bipolar are interested in engaging with ADM which is supported, collaborative and allows them to state treatment requests and refusals. Conclusions: Evidence in this area is limited. Clinicians should be aware that service users with bipolar are likely to value their support in creating ADM documents. In addition, it seems that people with bipolar may face fewer barriers and achieve greater success with ADM compared to those with other severe mental illnesses. Given the greater focus and likely demand for ADM following upcoming legal reform, further research is urgently needed to ensure available resources are most effectively targeted to achieve the best outcomes from ADM activities. This research should focus on clarifying: causal assumptions around ADM, the outcomes which are valued by key stakeholders, barriers to achieving these outcomes, stakeholder opinions on supporting 'self-binding' and the development and evaluation of models of ADM which are tailored for fluctuating DMC-T. [ABSTRACT FROM AUTHOR]

Objective: The aim of the study was to identify the challenges experienced by clinical nurse specialists (CNSs) when facilitating advance care planning (ACP) conversations with terminally ill patients. This paper focuses on the factors that influence CNSs when they are deciding whether to open an ACP discussion. Methods: Semi-structured interviews were used to collect data from eight purposively selected palliative care CNSs working in two different community teams. The interviews were recorded, transcribed, and analysed to identify themes. Findings: ACP required the CNSs to 'walk a tightrope', balancing potential harm with purported benefit. The nurses identified that their decision to introduce an ACP discussion was influenced by three key factors: an assessment of the patient's readiness to discuss the topic, their physical condition, and the nurse's relationship with the patient and family. Conclusion: ACP involves risk-taking on the part of those initiating it, owing to the potential for unforeseen or negative consequences. Further research is required to identify the factors that facilitate nurses involving patients in ACP. [ABSTRACT FROM AUTHOR]

Background: Digital legacy refers to the online content available about someone following their death. This may include social media profiles, photos, blogs or gaming profiles. Some patients may find it comforting that their digital content remains online, and those bereaved may view it as a way to continue bonds with the deceased person. Despite its growing relevance, there is limited evidence worldwide around the experiences of palliative care professionals in supporting patients to manage their digital legacy. Aim: To identify palliative care healthcare professionals' experiences of supporting patients receiving palliative care in managing digital legacy as part of advance care planning discussions. Design: A constructivist grounded theory approach was used to understand healthcare professionals' experiences of managing digital legacy. Semi-structured interviews were carried out. Setting and participants: Participants were 10 palliative care healthcare professionals from across the multidisciplinary team working in a hospice in the North-West of England. Results: Four theoretical categories were found to revolve around an emergent theory 'understanding the impact of digital legacy' which describe the experiences of palliative care healthcare professionals managing digital legacy as part of advance care planning. These were ' accessing digital legacy '; ' becoming part of advance care planning '; ' impacting grief and bereavement '; and ' raising awareness of digital legacy '. Conclusions: The emerging theory ' understanding the impact of digital legacy ' offers insight into the knowledge and experiences of healthcare professionals working in a palliative care setting. Digital assets were viewed as being equally as important as physical assets and should be considered as part of advance care planning conversations. [ABSTRACT FROM AUTHOR]

Background: Although home non-invasive ventilation for patients with chronic obstructive pulmonary disease and persisting hypercapnia prolongs time to hospital readmission and prognosis, they retain a poor long-term prognosis. Requiring non-invasive ventilation in this population should trigger advance care planning, yet only 50% of patients are engaged in such discussions. Aim: This study aimed to explore the barriers and facilitators to advance care planning for patients with chronic obstructive pulmonary disease on home non-invasive ventilation and generate recommendations for improving practice. Study design: A cross-sectional interview study took place with 10 patients with chronic obstructive pulmonary disease on home non-invasive ventilation and 12 North East Assisted Ventilation Service healthcare professionals from the North East of England. Results: Three themes ('overlooked', 'disjointed care' and 'awareness and expertise') were identified. Patients with chronic obstructive pulmonary disease are a 'forgotten about' population, exacerbated by prejudice and unpredictable disease trajectories. Recognition as a distinct and underserved population may improve care and advance care planning. All participants recognised a lack of care continuity, including limited collaboration and communication between services, as a significant barrier to advanced care planning. Additionally, lacking understanding of the rationale and positive impacts of advance care planning, exacerbated by a lack of expertise in difficult conversations, was a barrier to advance care planning. Conclusions: Patients and healthcare professionals highlighted the need for individualised and ongoing advance care planning, particularly around prognosis and care preferences. Discussions should be initiated by familiar clinicians. Effective communication between services, clear agreements and protocols and upskilling healthcare professionals may ensure continuity of care. [ABSTRACT FROM AUTHOR]

Background: The accuracy of prognostication has important implications for patients, families, and health services since it may be linked to clinical decision-making, patient experience and outcomes and resource allocation. Study aim is to evaluate the accuracy of temporal predictions of survival in patients with cancer, dementia, heart, or respiratory disease. Methods: Accuracy of clinical prediction was evaluated using retrospective, observational cohort study of 98,187 individuals with a Coordinate My Care record, the Electronic Palliative Care Coordination System serving London, 2010–2020. The survival times of patients were summarised using median and interquartile ranges. Kaplan Meier survival curves were created to describe and compare survival across prognostic categories and disease trajectories. The extent of agreement between estimated and actual prognosis was quantified using linear weighted Kappa statistic. Results: Overall, 3% were predicted to live "days"; 13% "weeks"; 28% "months"; and 56% "year/years". The agreement between estimated and actual prognosis using linear weighted Kappa statistic was highest for patients with dementia/frailty (0.75) and cancer (0.73). Clinicians' estimates were able to discriminate (log-rank p < 0.001) between groups of patients with differing survival prospects. Across all disease groups, the accuracy of survival estimates was high for patients who were likely to live for fewer than 14 days (74% accuracy) or for more than one year (83% accuracy), but less accurate at predicting survival of "weeks" or "months" (32% accuracy). Conclusion: Clinicians are good at identifying individuals who will die imminently and those who will live for much longer. The accuracy of prognostication for these time frames differs across major disease categories, but remains acceptable even in non-cancer patients, including patients with dementia. Advance Care Planning and timely access to palliative care based on individual patient needs may be beneficial for those where there is significant prognostic uncertainty; those who are neither imminently dying nor expected to live for "years". [ABSTRACT FROM AUTHOR]

Background: Dementia leads to multiple issues including difficulty in communication and increased need for care and support. Discussions about the future often happen late or never, partly due to reluctance or fear. In a sample of people living with dementia and carers, we explored their views and perceptions of living with the condition and their future. Methods: Semi-structured interviews were conducted in 2018-19 with 11 people living with dementia and six family members in England. Interviews were audio-recorded, transcribed and analysed using reflexive thematic analysis. Results: Findings were explored critically within the theory of social death and three themes were developed: (1) loss of physical and cognitive functions, (2) loss of social identity, and (3) social connectedness. Most participants living with dementia and carers wanted to discuss the present, rather than the future, believing a healthy lifestyle would prevent the condition from worsening. Those with dementia wanted to maintain control of their lives and demonstrated this by illustrating their independence. Care homes were often associated with death and loss of social identity. Participants used a range of metaphors to describe their dementia and the impact on their relationships and social networks. Conclusion: Focusing on maintaining social identity and connectedness as part of living well with dementia may assist professionals in undertaking advance care planning discussions. [ABSTRACT FROM AUTHOR]

Background: Advance care planning has been identified as one of few modifiable factors that could reduce hospital transfers from care homes. Several types of documents may be used by patients and clinicians to record these plans. However, little is known about how plans are perceived and used by care home staff at the time of deterioration. Aim: To describe care home staff experiences and perceptions of using written plans during in-the-moment decision-making about potential resident hospital transfers. Design: Qualitative semi-structured interviews analysed using the Straussian approach to grounded theory. Setting/participants: Thirty staff across six care homes (with and without nursing) in the East and West Midlands of England. Results: Staff preferred (in principle) to keep deteriorating residents in the care home but feared that doing so could lead to negative repercussions for them as individuals, especially when there was perceived discordance with family carers' wishes. They felt that clinicians should be responsible for these plans but were happy to take a supporting role. At the time of deterioration, written plans legitimised the decision to care for the resident within the home; however, staff were wary of interpreting broad statements and wanted plans to be detailed, specific, unambiguous, technically 'correct', understood by families and regularly updated. Conclusions: Written plans provide reassurance for care home staff, reducing concerns about personal and professional risk. However, care home staff have limited discretion to interpret plans and transfers may occur if plans are not specific enough for care home staff to use confidently. [ABSTRACT FROM AUTHOR]

Background: Due to the uncertain disease trajectory and variable rate of progression in chronic obstructive pulmonary disease (COPD), health care professionals (HCPs) are challenged in explaining what the future may hold for patients compared to those with lung cancer (LC). Support and communication of timely information can significantly improve health outcomes.Objective: This study sought to identify factors that impact communication and support and recommend ways to improve patients' understanding of living with life-threatening illness.Methods: Semi-structured interviews with patients with LC (n = 22) and advanced COPD (n = 18), their informal carers (21 LC and 18 COPD) and HCPs (n = 51). Patients were recruited from primary and secondary care in the East of England, UK, during 2010-12.Results: Directness and clarity characterized communication in LC, whereas uncertainty and limited explanations predominated in COPD. Discussions on how the disease might impact on decisions and preferences to be made in the future were less common in COPD. Information for LC patients was mainly from hospital clinicians and any information for COPD patients mainly from primary care clinicians.Conclusions: The experience of COPD patients could be improved by professionals soon after diagnosis explaining to them the typical pattern of decline in COPD, highlighting the inherent uncertainties about when exacerbations and death may occur. This conversation should lead to planning for the different challenges that the patient and informal carer recognize as most important to them. This contrasts with the 'breaking bad news' conversation that oncologists are highly trained to deliver. [ABSTRACT FROM AUTHOR]

Background: Although heart failure has a worse prognosis than some cancers, patients often have restricted access to well-developed end of life (EoL) models of care. Studies show that patients with advanced heart failure may have a poor understanding of their condition and its outcome and, therefore, miss opportunities to discuss their wishes for EoL care and preferred place of death. We aimed to explore the perceptions and experiences of health care professionals (HCPs) working with patients with heart failure around EoL care. Methods: A qualitative in-depth interview study nested in a wider ethnographic study of unplanned admissions in patients with heart failure (HoldFAST). We interviewed 24 HCPs across primary, secondary and community care in three locations in England, UK -- the Midlands, South Central and South West. Results: The study revealed three issues impacting on EoL care for heart failure patients. Firstly, HCPs discussed approaches to communicating with patients about death and highlighted the challenges involved. HCPs would like to have conversations with patients and families about death and dying but are aware that patient preferences are not easy to predict. Secondly, professionals acknowledged difficulties recognising when patients have reached the end of their life. Lack of communication between patients and professionals can result in situations where inappropriate treatment takes place at the end of patients' lives. Thirdly, HCPs discussed the struggle to find alternatives to hospital admission for patients at the end of their life. Patients may be hospitalised because of a lack of planning which would enable them to die at home, if they so wished. Conclusions: The HCPs regarded opportunities for patients with heart failure to have ongoing discussions about their EoL care with clinicians they know as essential. These key professionals can help co-ordinate care and support in the terminal phase of the condition. Links between heart failure teams and specialist palliative care services appear to benefit patients, and further sharing of expertise between teams is recommended. Further research is needed to develop prognostic models to indicate when a transition to palliation is required and to evaluate specialist palliative care services where heart failure patients are included. [ABSTRACT FROM AUTHOR]

The community matron (CM) is often the key worker caring for patients with chronic, life-limiting, long-term conditions, but these patients are not always recognised as palliative cases. This study explored the experiences of CMs with regard to advance care planning (ACP) and ‘do not attempt cardiopulmonary resuscitation’ (DNACPR) decision-making to understand whether or not they felt adequately prepared for this aspect of their role, and why. Qualitative data were generated from six CMs using a broad interpretive phenomenological approach. Face-to-face recorded interviews were analysed using template analysis. The study found that although participants faced complex ethical situations around ACP and DNACPR almost on a daily basis, none had received any formal training despite the emphasis on training in national and local guidelines. Participants often struggled to get their patients accepted on to the Gold Standards Framework. The research found variability and complexity of cases to be the main barriers to clear identification of the palliative phase. [ABSTRACT FROM AUTHOR]

The article presents a study which investigates the perception of general practitioners in relation with making and communicating Do Not Attempt Cardiopulmonary Resuscitation decisions for patients dying in the community in Southern England. Topics discussed include success of a resuscitation attempt, how general practitioners guide patients and families in decision-making, and confidence and support in end-of-life decisions.

The aim of the study was to describe the expectations and experiences of end-of-life care of older people resident in care homes, and how care home staff and the healthcare practitioners who visited the care home interpreted their role. A mixed-method design was used. The everyday experience of 121 residents from six care homes in the East of England were tracked; 63 residents, 30 care home staff with assorted roles and 19 National Health Service staff from different disciplines were interviewed. The review of care home notes demonstrated that residents had a wide range of healthcare problems. Length of time in the care homes, functional ability or episodes of ill-health were not necessarily meaningful indicators to staff that a resident was about to die. General Practitioner and district nursing services provided a frequent but episodic service to individual residents. There were two recurring themes that affected how staff engaged with the process of advance care planning with residents; 'talking about dying' and 'integrating living and dying'. All participants stated that they were committed to providing end-of-life care and supporting residents to die in the care home, if wanted. However, the process was complicated by an ongoing lack of clarity about roles and responsibilities in providing end-of-life care, doubts from care home and primary healthcare staff about their capacity to work together when residents' trajectories to death were unclear. The findings suggest that to support this population, there is a need for a pattern of working between health and care staff that can encourage review and discussion between multiple participants over sustained periods of time. [ABSTRACT FROM AUTHOR]

Background: In the UK, implementation of the Gold Standards Framework in Care Homes (GSFCH) programme is being promoted to develop the quality of end-of-life care for frail older people living and dying in care homes. Advance care planning (ACP) discussions are an integral part of this. This study explored experiences of initiating and completing these discussions in homes undertaking the GSFCH. Methods: A qualitative descriptive study was carried out in three nursing care homes implementing the GSFCH programme. Following an ACP discussion, 28 semi-structured interviews were conducted with the resident, a family member, and the staff member who undertook the ACP. Content analysis was then conducted. Findings: Three main categories of findings emerged: understanding ACP, undertaking ACP discussions, and impact of and reactions to ACP discussions. Staff understanding of ACP varied, affecting the depth of their discussions. Documentation was either a useful prompt or limited the discussion, blocking opportunistic cues and encouraging a 'tick-box' exercise. Residents were open to ACP, although the way it was introduced could affect the results. Families were comforted that the resident's future care had been considered. Education was identified as being important, and role modelling ACP enabled a member of staff to develop their skills and confidence in it. Conclusions: Care home staff need to develop the knowledge, skills, and confidence to engage in discussions around end-of-life care. The assistance of a trained facilitator who role-models this process should be explored. [ABSTRACT FROM AUTHOR]

The article discusses a qualitative study to evaluate professionals' experiences on the implementation of advance care planning (ACP) in two areas of clinical care, dementia and palliative care. Participants included Ninety-five participants from one Primary Care Trust, two acute National Health Service Hospital Trusts, one Ambulance Trust, one Local Authority and voluntary organization and the legal sector. The study found that professional, organizational and legal factors influenced ACP.

Increasing emphasis is being placed on the need for advanced care planning (ACP) at the end of life. The Preferred Priorities for Care (PPC) document is a patient-held record promoted by the End of Life Care Strategy as an ACP tool to promote discussion and communication amongst patients, family and health care providers. However, little research exists into evaluating its effectiveness or exploring patient and carer views, particularly in non-malignant disease. Because the majority of patients with Motor Neurone Disease (MND) lose verbal communication, early discussion of patients’ wishes and preferences, a central aspect of ACP, is vital. This study examined MND patients’ bereaved relatives’ experiences of using the PPC document and their perceptions about its impact on end-of-life care using qualitative methods. Key findings adding to existing literature were that the PPC document was felt to have little impact on end-of-life care amongst this patient group and that there was a perceived lack of awareness of the document amongst health care professionals (HCPs), in particular hospital staff. This was felt to limit the effectiveness of the document. This has obvious implications for practice, looking at awareness amongst HCPs and ways to improve this situation, particularly in light of the current pressures to meet patient preferences at the end of life. [ABSTRACT FROM PUBLISHER]

The English Department of Health's 2008 End of Life Care Strategy reported that 17% of deaths in England occur in care homes, with the majority of these in the 85 years and over age group. Given this, the ageing population, and the projected increase in the number of people dying, it is evident that the number of deaths in care homes is likely to increase. The research presented here seeks to consider the factors that support residents to remain in care homes towards the end of life. This study is based on four case studies of care homes in England and on interviews with external health and social care professionals who interact with these care homes. The findings indicate that three core features are fundamental to the delivery of high-quality end-of-life care in care homes: advance care planning, multidisciplinary communication and working, and provision of dignified and compassionate care. Previous research has uncovered some of these issues; this study suggests that it is the combination of these factors that makes them fundamental to meeting residents' care preferences and ensuring high-quality care. [ABSTRACT FROM AUTHOR]

Aim:To develop and evaluate an education programme to help older people find out about treatment and care choices at the end of life. Design: An action research approach was used to develop an education booklet about end-of-life care. A programme of qualitative evaluation ran alongside the project. It comprised a combination of methods, including face-to-face and telephone interviews and questionnaires with those who took part in the small group discussions. Sample: The research team consisted of five academic researchers and eight people recruited from voluntary groups representing older adults to act as community advisors in developing the programme. The booklet was tested in small group discussions with members of the general public. Five community advisors volunteered to act as `peer educators' and helped to lead the small group discussions after receiving a 3-day training course to prepare them for their role. The project took place in Sheffield. Results: The education discussions and the related booklet were perceived as acceptable in providing information about a sensitive issue. Peer educators felt that the training course prepared them well. Community advisors felt that they were treated as equal members of the research team. This project has served as a useful pilot study of the education programme that has now been extended to other areas of the UK. [ABSTRACT FROM AUTHOR]

Background: Studies have shown that more than half of patients with advanced progressive diseases approaching the end-of-life report pain and that pain relief for these patients is poorest at home compared to other care settings such as acute care facilities and hospice. Although home is the most common preferred place of death, the majority of deaths occur outside the home. Specialist palliative care is associated with improved quality of life, but systematic reviews of RCTs have failed to show a consistent association with better pain relief. The aim of this study was to examine the factors associated with good pain relief at home in the last 3 months of life for people with advanced progressive disease.Methods: Data were obtained from the National Bereavement Survey in England, a cross-sectional post-bereavement survey of a stratified random sample of 246,763 deaths which were registered in England from 2011 to 2015. From 110,311 completed surveys (45% response rate), the analysis was based on individual-level data from 43,509 decedents who were cared for at home before death.Results: Decedents who experienced good pain relief at home before death were significantly more likely to have received specialist palliative care (adjusted OR = 2.67; 95% CI, 2.62 to 2.72) and to have a recorded preferred place of death (adjusted OR = 1.87; 95% CI, 1.84 to 1.90) compared to those who did not. Good pain relief was more likely to be reported by a spouse or partner of the decedents compared to reports from their son or daughter (adjusted OR = 1.50, 95% CI, 1.47 to 1.53).Conclusion: This study indicates that patients at home who are approaching the end-of-life experience substantially better pain relief if they receive specialist palliative care and their preferred place of death is recorded regardless of their disease aetiology. [ABSTRACT FROM AUTHOR]

Background: Good end-of-life care planning is vital to ensure optimal care is provided for patients and their families. Two key factors are open and honest advance care planning conversations between the patient (where possible), family, and health care professionals, focusing on exploring what their future wishes are; and the development of an advance care plan document. However, in paediatric and neonatal settings, there has been little research to demonstrate how advance care planning conversations take place. This study explored health care professionals' views and experiences of paediatric advance care planning in hospitals, community settings and hospices. Methods: A qualitative methodology was employed using purposive sampling of health care professionals involved in the end-of-life care for children aged 0–18 years known to the hospital palliative care team, and had died at least three months before, but less than 18 months prior to the study. Ethics committee approval was obtained for the study. Located in the North of England, the study involved three hospitals, a children's hospice, and community services. Data were collected using semi-structured, digitally recorded, telephone interviews. All interviews were transcribed verbatim and subjected to thematic analysis. Results: Twenty-one health care professionals participated, including generalist paediatric staff as well as specialist palliative care staff. Two themes were generated from the study: The timing of planning conversations, including waiting for the relationship with the family to form; the introduction of parallel planning; avoiding a crisis situation. Secondly, supporting effective conversations around advance care planning, including where to have the conversation; introducing the conversation; and how to approach the topic encompassing the value of advance care planning and documentation for families. Conclusion: The timing of when to start the advance care planning conversations remains an issue for health care professionals. The value of doing it in stages and considering the environment where the conversations are held was noted. Timely planning was seen as vital to avoid difficult conversations at a crisis point and for co-ordination of care. Good advance care planning is to provide the best person-centred care for the child and experience for the family. [ABSTRACT FROM AUTHOR]