Advance Care Planning Tool Research Articles

Advance Care Planning Bundle: Using Technical and Adaptive Solutions to Promote Goal Concordant Care

BackgroundAdvance Care Planning (ACP) is critical to achieve goal-aligned care for patients. However, optimal implementation requires complex coordination and alignment across a healthcare system. MeasuresA survey of rapid response providers assessed usefulness of the ACP quality improvement bundle and perceptions of use and adherence. InterventionWe implemented a bundle of advance care planning tools and interventions using the technical-adaptive framework. These included orders, documentation templates and processes, and standard education. OutcomesNinety-three rapid response providers completed the survey. 80.5% reported that overall, these quality improvement efforts have been very helpful or somewhat helpful in improving their ability to provide care consistent with the patient's goals. Conclusions/Lessons LearnedImplementation of technical and adaptive tools as a bundle for Advance Care Planning shows promise to improve and sustain goal-aligned care. Quality Improvement in ACP is a complex, iterative process involving both structural change and behavioral adaptation.

Feasibility of Nurse-Facilitated Advance Care Planning Among Older Veterans in a Dialysis Unit and an Oncology Infusion Center.

Many veterans with serious illnesses, such as end-stage kidney disease requiring dialysis and advanced cancer requiring treatment infusions, must make complex decisions about their current and future medical care. Advance care planning (ACP) is a process where individuals identify, express, and communicate their personal values, life goals, and preferences for care. ACP may be feasible in chemotherapy infusion centers or chronic dialysis centers during patient treatment. We assessed the feasibility of a licensed vocational nurse (LVN) facilitator to help veterans review the PREPARE for Your Care program (www.prepareforyourcare.org) and complete an advance directive (AD) in an outpatient hemodialysis unit or a chemotherapy infusion center. PREPARE For Your Care is an evidence-based online program with written pamphlets and ADs that prepares patients to participate with clinicians in making medical decisions. We measured the time to complete a session and the level of assistance required from LVNs via LVN self-report. Self-reported ease-of-use, comfort, and helpfulness were assessed on a 10-point Likert scale from 1 (not at all) to 10 (very). Twenty-eight patients were enrolled (mean age ± SD: 67 ± 11 years); all (100%) completed PREPARE and the AD within 1 session. The mean completion time was 100 (±40) minutes. Most of the patients required considerable assistance from the LVN. The mean scores were 8.0 of 10 for ease-of-use (±2.3), 7.7 of 10 (±2.8) for comfort, and 8.2 of 10 (±2.3) for helpfulness. This pilot study demonstrates that using PREPARE as an ACP tool for veterans may be feasible for patients during hemodialysis and chemotherapy infusion. Patients required considerable assistance from the LVN to complete PREPARE. Hemodialysis and chemotherapy infusion are opportunities when patients have time and space to consider ACP.

Evaluation of interactive web-based tools to stimulate reflection and communication about advance care planning with people with dementia and their family caregivers

BackgroundPeople with dementia and their family caregivers often encounter challenges in engaging in advance care planning (ACP), such as a lack of information and difficulties in engaging in ACP conversations. Using a user-centred design, we developed two interactive web-based tools as part of an ACP support website to stimulate ACP reflection and communication: (1) the ‘Thinking Now About Later’ tool, with open-ended questions about ‘what matters most’, and (2) a digital version of the ‘Life Wishes Cards’, a card tool with pre-formulated statements that prompt reflection about wishes for future care. This study aimed to evaluate the use of and experiences with two web-based tools by people with dementia and their family caregivers.MethodsDuring an eight-week period, people with dementia and family caregivers were invited to use the ACP support website in the way they preferred. The mixed-methods evaluation of the ACP tools involved capturing log data to assess website use and semi-structured qualitative interviews to capture experiences. Analyses included descriptive statistics of log data and framework analysis for qualitative data.ResultsOf 52 participants, 21 people had dementia and 31 were family caregivers. The ‘Thinking Now About Later’ tool and ‘Life Wishes Cards’ were accessed 136 and 91 times respectively, with an average session duration of 14 minutes (SD = 27.45 minutes). 22 participants actively engaged with the tools, with the majority using the tools once, and seven revisiting them. Those who used the tools valued the guidance it provided for ACP conversations between people with dementia and their family caregivers. Participants reported that people with dementia experienced barriers to using the tools on their own, hence family caregivers usually facilitated the use and participation of people with dementia. Some highlighted not knowing what next steps to take after completing the tools online.ConclusionsAlthough less than half the people used the ACP tools, those who used them found them helpful to facilitate communication between people with dementia and their family. Family caregivers of people with dementia played a crucial role in facilitating the use of the web-based tools.

Achieving goal-concordant care: Formal and informal advance care planning for White, Black, and Hispanic older adults.

Advance care planning (ACP) aims to ensure that patients receive goal-concordant care (GCC), which is especially important for racially or ethnically minoritized populations at greater risk of poor end-of-life outcomes. However, few studies have evaluated the impact of advance directives (i.e., formal ACP) or goals-of-care conversations (i.e., informal ACP) on such care. This study aimed to examine the relationship between each of formal and informal ACP and goal-concordant end-of-life care among older Americans and to determine whether their impact differed between individuals identified as White, Black, or Hispanic. We conducted a retrospective cohort study using 2012-2018 data from the biennial Health and Retirement Study. We examined the relationships of interest using two, separate multivariable logistic regression models. Model 1 regressed a proxy report of GCC on formal and informal ACP and sociodemographic and health-related covariates. Model 2 added interaction terms between race/ethnicity and the two types of ACP. Our sample included 2048 older adults. There were differences in the proportions of White, Black, and Hispanic decedents who received GCC (83.1%, 75.3%, and 71.3%, respectively, p < 0.001) and in the use of each type of ACP by racial/ethnic group. In model 1, informal compared with no informal ACP was associated with higher odds of GCC (adjusted odds ratio = 1.38 [95% confidence interval, 1.05-1.82]). In model 2, Black decedents who had formal ACP were more likely to receive GCC than those who did not, but there were no statistically significant differences between decedents of different racial/ethnic groups who had no ACP, informal ACP only, or both types of ACP. Our results build on previous work by indicating the importance of incorporating goals-of-care conversations into routine healthcare for older adults and encouraging ACP usage among racially and ethnically minoritized populations who use ACP tools at lower rates.

"It Gives Me Peace of Mind So I Can Focus on Healing": Views on Advance Care Planning for Older Surgical Patients.

Introduction: The period of time before an elective operation may be an opportune time to engage older adults in advance care planning (ACP). Past interventions have not been readily incorporated into surgical workflows leaving a need for ACP tools that are generalizable, easy to implement, and effective. Design: This is a qualitative study. Setting and Subjects: Older adults with a history of cancer and a recent major operation were recruited through their surgical oncologist at a tertiary medical center in the United States. Interviews were conducted to determine how to adapt the validated PrepareForYourCare.org ACP program with electronic health record prompts for the perioperative setting and openness to introducing ACP during a presurgical visit. We used qualitative content analysis to determine themes. Results: Eight themes were identified: (1) ACP as static and private, (2) people expected a prompt, (3) family trusted to do the "right" thing, (4) lack of relationship or comfort with providers, (5) a team-based approach can be helpful, (6) surgeon's expertise (e.g., prognosis and surgical risk), (7) ACP belongs on the surgical checklist, and (8) patients would welcome a conversation starter. Discussion: Older surgical patients are interested in engaging with ACP, particularly if prompted, and believe it has a place on the preoperative "checklist." Conclusions: To effectively engage patients with ACP, a combination of routine prompts by the health care team and patient-centered follow-up may be required.

Tools for tomorrow: a scoping review of patient-facing tools for advance care planning.

Advance care planning (ACP) supports individuals in aligning their medical care with personal values and preferences in the face of serious illness. The variety of ACP tools available reflects diverse strategies intended to facilitate these critical conversations, yet evaluations of their effectiveness often show mixed results. Following the Arskey and O'Malley framework, this scoping review aims to synthesize the range of ACP tools targeted at patients and families, highlighting their characteristics and delivery methods to better understand their impact and development over time. Studies included focused on patient-facing ACP tools across all settings and mediums. Exclusions were applied to studies solely targeting healthcare providers or those only aiming at completion of advance directives without broader ACP discussions. Searches were conducted across PubMed, Embase, CINAHL, The Cochrane Library, and Web of Science. Data were extracted using a predesigned spreadsheet, capturing study population, setting, intervention modality, and intervention theme. Tools were categorized by delivery method and further analyzed through a year-wise distribution to track trends and developments. We identified 99 unique patient-facing tools, with those focusing on counseling (31) and video technologies (21) being the most prevalent while others incorporated online platforms, print materials, games, or some combination of different delivery methods. Over half the tools were designed for specific patient groups, especially for various diseases and racial or ethnic communities. Recent years showed a surge in tool variety and innovation, including integrated patient portals and psychological techniques. The review demonstrates a broad array of innovative ACP tools that facilitate personalized and effective ACP. Our findings contribute to an enhanced understanding of their utilization and potential impacts, offering valuable insights for future tool development and policy making in ACP.

End-of-Life Preference Lists as an Advance Care Planning Tool for Japanese People.

Advance care planning (ACP) is important to determine the wishes of patients before they lose decision-making capacity. However, Japanese people are often reluctant to have end-of-life discussions. This study aims to develop and categorize an end-of-life preference list in the Japanese context to encourage dialog about ACP for healthcare providers and patients. A questionnaire was developed with end-of-life choices prioritized by a sample of Japanese subjects. Data were collected either in person or by mail. The list of Japanese preferences was compiled and categorized into four domains: medical care, life and care, relationships, and values, with 11-12 items in each domain. The highest-ranking items chosen by >70% of participants were in the relationships and values domains. Subjects with two cohabitants tended to be biased toward the "with others" group, focused on spending time with others, whereas those with older age and higher clinical frailty scale scores tended to be biased toward the "how to live" group.

Primary Care Physicians' and Hospitalists' Experience with Advance Care Planning with South Asian Canadian Older Adults before and during COVID-19.

Few older adults discuss their end-of-life care wishes with their physician, and even fewer minorities do this. We explored physicians' experience with advance care planning (ACP) including the barriers/facilitating factors encountered when initiating/conducting ACP discussions with South Asians (SA), one of Canada's largest minorities. Eleven primary care physicians (PC) and 11 hospitalists with ≥ 15 per cent SA patients ≥ 55 years of age were interviewed: 10 in 2020, 12 in 2021. Thematic analysis of transcripts indicated that cultural and communication barriers, physician's specialization, SA older adults' lack of ACP awareness, and decision-making deference to family and physicians were barriers to ACP discussions. Although the COVID-19 pandemic impacted physicians' practices, contrary to our hypothesis most reported no change in frequency of ACP discussions. Although ACP discussions were viewed as best conducted by PC physicians, only 55 per cent had ACP training and only 64 per cent had used ACP tools. Training in ACP facilitation, concerning ACP tool usage, and training in patient-physician communication are recommended.

Feasibility and Efficacy of the LEAD Dementia Advance Care Planning Intervention

AbstractBackgroundUsing our dementia‐focused advance care planning tool (ACP), known as the LEAD Guide (Life‐Planning in Early Alzheimer’s and Other Dementias),1‐3 we implemented a 9‐month NIH Stage‐14 behavioral intervention to promote ACP concordance in community‐based ADRD dyads. Dyads consisted of care recipients (persons concerned about dementia or those with a diagnosis of preclinical or early‐stage dementia) and their care partner. The goal of this study was to assess the feasibility and initial efficacy of the intervention.MethodFeasibility was assessed by examining the percent of enrollment of eligible participants, retention rate, and completion of data collection across study timepoints through the post intervention assessment. To explore the initial efficacy of the LEAD Intervention on study outcomes (ACP completion and dissemination, relationship quality, decision‐making self‐efficacy), we utilized longitudinal survey‐based measures to assess dyadic constructs that illustrate how the dyad functioned over time. Baseline to post changes were examined utilizing mixed effects models.ResultsWe screened 73 dyads, 58 dyads were eligible and 51 dyads participated in the study (see Figure 1 and Table 1). There were 34 dyads (67.7% retention) that completed baseline through the post‐intervention assessments. Table 2 shows results of changes in self‐report measures between baseline and post. Scores on the Decision‐Making Self‐Efficacy Scale5 revealed improved efficacy in both the care recipient and care partner at post intervention compared to baseline. Analysis showed no significant improvement in the positive domain of the Dyadic Relationship Scale6 in either care recipient or care partner, however, relationship strain domain significantly declined following the intervention in both the care recipient and care partner. Of the 51 starting dyads, 27 care recipients had already completed an advanced directive. By post, an addition 7 had completed an advanced directive, 9 were planning on completing, and 33 had shared ACP documents with others.ConclusionThe web‐based, self‐administered LEAD Intervention is a feasible and effective platform to promote ACP planning in community‐based ADRD dyads. Participation in ACP conversations and documentation can help reduce relationship strain and improve decision‐making self‐efficacy, thus promoting future care decisions that align with the care recipient’s values and preferences.

"At the End I Have a Say": Engaging the Chinese Community in Advance Care Planning.

Despite the association of advance care planning (ACP) with improved patient and caregiver outcomes, Chinese American elders have low rates of ACP. Assess ACP facilitators/barriers in the San Francisco (SF) Chinese community and codesign, implement, and test community-based ACP-promoting pilot events. A Chinese Community Committee (N=19 community-based organization leaders, health system representatives, community members) conducted focus groups in Cantonese and English with Chinese older adults (age ≥55), caregivers, and community leaders. The Committee designed and implemented pilot events in-person and online. We analyzed focus group data using thematic analysis; assessed pre-to-post-event readiness to engage in ACP (validated survey; 14 scale, 4=most ready); and assessed event acceptability. A total of 34 people participated in six focus groups. Themes described Chinese community-specific importance of ACP (e.g., reduces family burden), barriers (e.g., younger generations lack tools to discuss ACP with elders and vice versa), and facilitators (e.g., intergenerational events, culturally/linguistically appropriate materials). Based on focus groups findings, the Committee developed a novel ACP tool and designed intergenerational events. A total of 195 participants attended 10 events; 95% were Chinese, 90% spoke Chinese languages, 80% were women. ACP readiness increased significantly (1.66 [SD 0.84] vs. 2.03 [SD 0.85]; P < 0.001); 94% of participants were comfortable attending and 96% would recommend events. Community-developed intergenerational events that highlight the value of ACP and address barriers are acceptable and increase ACP engagement in the Chinese community.

Advance care planning to patients with chronic kidney disease and their families: An intervention development study.

To develop an advance care planning intervention based on the needs of patients with chronic kidney disease, families and healthcare professionals. Patients with chronic kidney disease and their families request early advance care planning that continues throughout their illness trajectory. Healthcare professionals experience barriers to initiating advance care planning. Involvement of stakeholders in development of health interventions is important, to identify priorities, understand the problem and find solutions. The development was inspired by the Medical Research Council's framework, and codesign was applied. One future workshop and one design workshop were conducted with the consumers. The process was iterative, and data were analysed using the action research spiral. The Guidance for reporting intervention development studies in healthcare (GUIDED) was used. Five areas were considered significant to an advance care planning intervention; a biopsychosocial approach, early palliative care, a family-focused approach, early and continuous advance care planning and a consumer-centred approach. Based on these, a conversation process with healthcare professionals was designed to give patients and families the opportunity to share values, preferences and wishes for treatment and their family and everyday life. Codesign facilitated a collaborative process that allowed the consumers to have a significant impact on the design of an advance care planning intervention. A conversation process concerning everyday life, illness and treatment was designed for patients and families. The intervention included an advance care planning tool to guide the healthcare professionals. The intervention has the intention to improve the communication between healthcare professionals, patients and families. The study provides important knowledge about the significance of giving the patients and their families support in sharing their values, preferences and wishes for treatment and everyday life, thus, to improve care and treatment in their illness trajectory. What problem did the study address Patients with chronic kidney disease and their families strongly request early initiation of advance care planning that continues throughout the illness trajectory. Healthcare professionals experience barriers to the initiation of the advance care planning and request a more systematic approach. What were the main findings Development of a conversation process about everyday life, illness and treatment for patients diagnosed with chronic kidney disease and families, including an advance care planning tool to guide the healthcare professionals. Where and on whom will the research have an impact The study contributes an advance care planning intervention to patients in the early stages of chronic kidney disease and their families. We believe that the intervention could be included during consultations with healthcare professionals in other stages of chronic kidney disease as well as other chronic disease. To strengthen the reporting of the development of the advance care planning intervention, we used the Guidance for reporting intervention development studies in healthcare (GUIDED). The development of the intervention in this study was a collaborative process between patients, families, healthcare professionals and representatives from the Danish Kidney Association, the department's user council and the research team.

Examining the Cultural Appropriateness of Advance Care Planning Tools for Adolescents and Young Adults With Cancer: An Example of Cross-Cultural Adaptation of the Voicing My CHOiCES Tool

Advance care planning (ACP) is crucial in supporting optimal, patient-centered care for adolescents and young adults (AYAs) with life-limiting illnesses and can reduce unwanted outcomes at end-of-life. While several ACP tools and interventions have been designed for AYAs, most of these were developed in the United States of America (USA). This paper describes a study designed to adapt the AYA ACP tool, Voicing My CHOiCES (VMC), for the Australian population. A 2-stage mixed methods approach was used. Stage 1 involved a multiperspective interview to determine changes for the new Australian VMC. Participants were AYAs between the ages of 15 to 25, healthcare professionals, and parents. For each section, participants responded to questions targeting the helpfulness and usefulness of the items as well as open-ended questions about any suggested content or formatting changes. Stage 2 used think-aloud interviews asking AYA cancer patients and survivors aged between 15 and 39 years to respond to proposed changes for the Australian VMC. Stage 1 participants suggested changes to all pages of VMC, with proposed changes being based around language, content, and format. Stage 2 participants qualitatively confirmed the acceptability of these changes. Our data suggests that even between similar Western cultures, significant adaptations can be made to make ACP tools more culturally appropriate. More research is needed to further adapt ACP tools like VMC for culturally and linguistically diverse groups and to ensure these tools can be accessed by all AYAs with life-limiting illness.

Health Disparities in Advance Care Planning: Development of a Spanish-Language LEAD Guide (Life-Planning in Early Alzheimer's and Other Dementias).

The LEAD (Life-Planning in Early Alzheimer's and Other Dementias) Guide is an advance care planning (ACP) tool for use within the context of dementia. To meet the needs of diverse communities, we sought to create a culturally sensitive and translated Latin American Spanish version of the guide. First, the guide was translated into Spanish. Second, we conducted forward and backward translations. Third, focus groups with Spanish-speaking Latino adults were held (healthy adults and current or previous dementia caregivers). Descriptive analysis revealed three domains regarding the Latin American Spanish version of the LEAD Guide (LA LEAD Guide): (1) Family Dynamics (e.g., preventing family conflict), (2) Cultural Expectations (e.g., familial caregiving responsibility), and (3) Health Literacy (e.g., lack of knowledge about ACP). This process created the Latin American LEAD Guide as a culturally and linguistically appropriate and acceptable ACP tool for older Latino adults. The availability of culturally sensitive and Spanish ACP resources could facilitate greater health care access and research participation among Latino Americans by diminishing the linguistic and health literacy barriers for those not comfortably proficient in English.

Advance care plans for vulnerable and disadvantaged adults: systematic review and narrative synthesis

BackgroundEvidence suggests that there is a gap in advance care planning (ACP) completion between vulnerable and disadvantaged populations compared with the general population. This review seeks to identify tools, guidelines...

Advance care planning for frail elderly: are we missing a golden opportunity? A mixed-method systematic review and meta-analysis

ObjectiveThe aim is to integrate quantitative and qualitative evidence to understand the effectiveness and experience of advance care planning (ACP) for frail elderly.DesignA mixed-methods systematic review and meta-analysis was conducted....

The care planning umbrella: The evolution of advance care planning.

The care planning umbrella: The evolution of advance care planning.

Promoting Advance Care Planning for Persons with Dementia: Study Protocol for the LEAD (Life-Planning in Early Alzheimer's and Other Dementias) Clinical Trial.

Due to the insidious progression of Alzheimer's disease and related dementias (ADRD), surrogate decision-makers typically make medical and long-term-care decisions for a care recipient, most often a family care partner. Unfortunately, many care recipient/care partner dyads have failed to engage in advance care planning or have lost the opportunity to do so due to the cognitive decline of the care recipient. To address this need, our team created a validated dementia-focused advance care planning tool known as the LEAD Guide (Life-Planning in Early Alzheimer's and Other Dementias). With funding from the National Alzheimer's Association and in consultation with our community advisory board, we developed a preliminary web-based intervention. This intervention integrates the LEAD Guide with self-paced educational modules that lead dyads through conversations and dementia-focused advance care planning processes. In this concept paper, we describe the aims of our funded R01 clinical trial (National Institute on Aging), where we aim to refine our preliminary web-based platform for use in a 5-month mixed-method NIH Stage-1 behavioral intervention. Using a sample of diverse community-based ADRD dyads (n = 60), we aim to: 1) describe the acceptability, usability, and feasibility of the intervention, 2) assess the initial efficacy of the intervention on the primary outcome (decision-making self-efficacy), and secondary outcomes (relationship quality, subjective well-being, anxiety) as perceived by both the care recipient and the care partner, and 3) examine advance care planning congruence as a mechanism of action. The LEAD clinical trial addresses public health challenges by guiding and supporting families through challenging advance care planning conversations, facilitating the transfer of knowledge regarding care preferences and values from the care recipient to the care partner, with the ultimate goal of improving the quality of life for both individuals with ADRD and their care partners.

ADVANCE CARE PLANNING FOR SPANISH-LANGUAGE SPEAKERS: PATIENT, FAMILY, AND INTERPRETER PERSPECTIVES

Abstract Language access is a challenge to advance care planning (ACP). Spanish-language speakers are the largest non-English speaking population in the US. While ACP tools have been translated into Spanish, it is unclear how heterogeneity in country of origin may affect the generalizability of translations across diverse US Spanish-speaking populations. The study objective is to describe challenges and facilitators to ACP for diverse populations of Spanish-language speakers. We conducted 3 focus groups with a total of 29 participants from members of Spanish-language speaking communities whose countries of origin were predominantly from the Caribbean, Central, and South America. Eligibility included being 18 years or older, being a native Spanish-speaker, and having direct experience with ACP as a patient, caregiver, or medical interpreter. We conducted thematic analysis with axial coding. Themes include: 1. Linguistic Challenges with Current ACP Translations; 2. Effect of Country of Origin and Culture on ACP Understanding; 3. Impact of Local Healthcare System Cultural on ACP; and 4. Need for ACP to be Normalized into the Local Community. ACP is both a cultural practice and a clinical practice. Recommendations for improving ACP completion for non-English speakers extend far beyond translation, since simply translating ACP tools without a cultural context is neither equitable nor inclusive. A key step is normalizing ACP into the local community. Understanding the intersection of local healthcare systems of ACP practice with the patient’s and family’s cultures of origin will facilitate introducing ACP in a culturally sensitive manner.

Benefits of Structured Advance Care Plan in end-of-Life Care Planning among Older Oncology Patients: A Retrospective Pilot Study.

Objectives: Studies suggest that advance care planning (ACP) results in improved quality of life and reduced healthcare consumption. We assessed how the use of a structured advance care planning tool (ACPT) in oncology patients relates to their healthcare consumption before death, and to the match between preferred and actual place of death. Methods: We performed a pilot study at a teaching hospital in the Netherlands. Endpoints were 1) healthcare consumption at three and one month(s) before death, and 2) the match between preferred and actual place of death. Results: The study included 75 patients without an ACPT (group 1) and 59 patients with an ACPT (group 2) of whom the preferred place of care or death were documented at least three months before death in 15 patients (subgroup 2b). Compared to group 1, patients in group 2 had significantly more healthcare consumption. However, compared to group 1, patients in subgroup 2b underwent significantly less diagnostic (33.3% (n = 5) versus 69.3% (n = 52), p < 0.05) and laboratory tests (33.3% (n = 5) versus 62.7% (n = 47), p < 0.05) one month before death. Patients in subgroup 2b died at their preferred place more often (76.9%, n = 10) compared to patients in group 1 (58.3%, n = 7) (NS), which meant more deaths at home and less in-hospital-deaths. Conclusions: The results suggest that timely documentation of the preferred place of care or death in a structured ACPT may result in less healthcare consumption and a better match between the preferred and actual place of death.

How can advance care planning tools help young people's voices be heard?

The integration of the child or young person (CYP) in conversations around advance care planning (ACP) is an important area of paediatric practice. These discussions provide CYP with the opportunity to voice their values, goals and preferences, enabling health-care professionals to ensure they are aligned with their planned course of treatment. This process, often undertaken within the context of the child's family, empowers children to participate in decisions and experience the dignity of self-determination. It also facilitates an increased understanding between the CYP and those involved in their care. The objectives of this paper are to highlight the importance of these conversations for paediatricians and identify barriers, both real and perceived, that may prevent them from engaging with a CYP about their preferences for future care including focusing more on discussion with the parents, and concern about or not having the skills to engage the child in such sensitive conversations. Triggers that can prompt clinicians to undertake ACP are also discussed. A further complexity is that after seeking their perspective, it may become apparent that the CYP may hold different views and perspectives to their parents and/or clinician. This review article will especially examine elements of end-of-life conversations that are critical to support the important goal of listening to the voice of the CYP. This includes considerations around timing, legal aspects, ethical tensions that arise when amplifying a child's voice, clinician/team-member roles, clinical process considerations, and the use of specific interventions and ACP tools to facilitate these conversations with CYP.