Advance Care Planning Experiences Research Articles

Experiences with advance care planning in amyotrophic lateral sclerosis: Qualitative longitudinal study with people with amyotrophic lateral sclerosis and their family carers

Background: It is unclear when people with amyotrophic lateral sclerosis and their family carers think about their future, what they would prefer in terms of care, and how their ideas change over time. Aim: Understanding experiences with advance care planning of persons with amyotrophic lateral sclerosis and their family carers—and if, when, how, and why these experiences change over time. Design: A qualitative longitudinal interview study. Analysis involved content analysis, followed by a two-step timeline method to describe changes in advance care planning experiences within and across participants. Setting/participants: Nine persons with amyotrophic lateral sclerosis and nine family carers who were interviewed three times over a 9-month period. Results: All participants thought about future care, but few talked about it. Over time, advance care planning experiences were influenced by intertwined elements: (1) experienced physical decline and related future care needs; (2) how persons with amyotrophic lateral sclerosis identify themselves as patients; (3) obtaining information about diagnosis and prognosis; (4) professionals initiating conversations about medical aspects of end-of-life decisions; (5) balancing between hope to remain stable and worry about the future; and (6) protecting themselves and each other from worries about the future. Conclusion: This study emphasizes how factors such as coping with the disease and relational dynamics shape individuals’ thoughts about future care over time and how psychological, social, and medical factors are interwoven in advance care planning. The findings advocate for a process-oriented perspective, portraying advance care planning as an ongoing dialog, encompassing the needs, concerns, and emotions of both people with amyotrophic lateral sclerosis and their family carers.

A Mixed-Methods Comparison of Interventions to Increase Advance Care Planning.

Although interventions can increase advance care planning (ACP) engagement, it remains unclear which interventions to choose in primary care settings. This study compares a passive intervention (mailed materials) to an interactive intervention (group visits) on participant ACP engagement and experiences. We used mixed methods to examine ACP engagement at baseline and six months following two ACP interventions. Eligible patients were randomized to receive mailed materials or participate in two ACP group visits. We administered the 4-item ACP Engagement survey (n = 110) and conducted interviews (n = 23). We compared mean scores and percent change in ACP engagement, analyzed interviews with directed content analysis to understand participants' ACP experiences, and integrated the findings based on mailed materials or group visits intervention. All participants demonstrated increased ACP engagement scores. At six months, group visit participants reported higher percent change in mean overall score compared with mailed materials participants (+8% vs +3%, P < .0001). Group visits participants reported that being prompted to think about end-of-life preferences, gaining knowledge about ACP, and understanding the value of completing ACP documentation influenced their ACP readiness. While both interventions encouraged patients to start considering and refining their end-of-life preferences, group visits made patients feel more knowledgeable about ACP, highlighted the importance of completing ACP documentation early, and sparked further ACP discussions with others. While primary care patients may benefit from mailed ACP materials, patients reported increased readiness after ACP group visits. Group visits emphasized the value of upstream preparation, ongoing conversations, and increased knowledge about ACP.

Changes in care managers' positive attitudes toward dying patients compared to that of nurses by one-day online advance care planning communication training.

Culturally appropriate communication training programs for a wide range of professions that can be used during infection epidemics are crucial for advance care planning implementation. Starting in 2018, the Japanese Ministry of Health, Labour and Welfare made a major policy change, and doctors, nurses, and social workers, and care managers were identified in the guidelines as the professions that promote advance care planning. Motivated by the lack of online programs for Japanese care managers, we proposed a new one-day program. This study aimed to determine the changes in the positive attitude of care managers toward dying patients compared to that of nurses, which has been used in past literature as an outcome of advance care planning educational interventions, after administering the program in Japan. Before-after comparison study. Care managers were recruited through our website, ACP-Piece, http://plaza.umin.ac.jp/~acp-piece/piece.html. A questionnaire survey concerning positive attitudes toward dying patients was administered before and after the program on 28 August 2021. Sixty-six subjects participated in the training and 60 participants, including 14 care managers, consented to the study and completed the questionnaire surveys before and after the program. The Frommelt attitude toward care of the dying scores for care managers increased after the program (p-values, confidence intervals, and effect sizes: p < 0.001, -11.90 to -4.388, -1.252). After training, care managers had a significantly higher maximum score occurrence than nurses. Older care managers with advance care planning experience may have had a higher maximum score occurrence compared to younger, inexperienced participants. To our knowledge, this is the first to demonstrate the increased positive attitude scores toward dying patients after online communication training for Japanese care managers. The limitations of this study include the lack of evidence regarding reasons for score changes, long-term score changes, and effectiveness for patients and their families.

Intersectionality factors and equitable end-of-life experiences: rapid review

BackgroundEfforts to minimise inequity in palliative and end-of-life care (PEoLC) are well-researched. This is frequently explained by differences related to singular factors. The concept of intersectionality recognises that the combination of variables exacerbates disparities.ObjectiveTo identify and review what is known about intersectionality’s impact on experiences of PEoLC, including advance care planning (ACP).MethodsA rapid review with a narrative summary of peer-reviewed articles. Six electronic databases were searched for studies explicitly exploring the role of intersectionality in the experience of PEoLC and ACP for people with life-limiting or terminal illnesses, published in the last 10 years.ResultsIdentifying eligible papers was challenging. Of the 3738 papers found, only seven were eligible. Of the seven included papers, four explored the impact of intersectionality on access to and attitudes towards ACP. Two studies involved access to PEoLC and one considered quality of care received in the last year of life.ConclusionsUnderstanding intersectionality is crucial for delivering personalised approaches to care and support. The relationship between intersecting factors and end-of-life experiences is complex and there is currently a paucity of studies considering this. The majority of existing literature addresses a narrow range of variables. Additionally, the lack of guidance on the application of intersectionality in research, makes it difficult to compare and synthesise findings. Further diverse action-orientated research is necessary to produce impactful evidence to inform future policy with the aim of reducing inequity in PEoLC.

Experiences of dialogue in advance care planning educational programs.

Advance care planning (ACP) is a process in which adults engage in an ongoing dialogue about future medical treatment and care. Though ACP is recommended to improve the quality of end-of-life care, the details of the dialogue experience in ACP are unknown. To explore participants' experiences of dialogue in an ACP educational program that encouraged them to discuss the value of a way of life. This qualitative descriptive study used the focus group interview method. Data were analyzed using qualitative content analysis. A dialogue-based ACP educational program was conducted in four regions in Japan for local citizens to discuss the value of their way of life. A total of 66 individuals (mean age = 55.5 ± 17.2years; 50 women and 16 men) participated in focus group interviews. This study was approved by the Ethical Review Committee of Tokyo Women's Medical University (no. 4723) and Kyoto University (no. R2099). Five main themes were extracted: discussing one's thoughts with others in a considerate manner, reflecting on one's way of life through others, feeling a sense of connection with others through storytelling, realizing the difficulties of talking about "what if" topics, and turning one's eyes toward the future through the dialogue. These themes were interrelated and illustrated the complexity of the experience of discussing values. The results suggest that dialogue in ACP is useful in clarifying values. They also indicated the need for dealing with the ethical challenges of discussing value and the importance of caring for the interlocutor to have a safe dialogue. In the ACP process, safety in dialogue may improve readiness in ACP, and health practitioners who support ACP need to address the ethical challenges entailing dialogue about values.

Reliability and Validity of the Chinese Version of Advance Care Planning Self-efficacy Scale for Physicians.

Background: Chinese patients prefer physicians to initiate advance care planning (ACP) conversations, but there is no appropriate tool to evaluate physicians' ACP self-efficacy level in mainland China. This study aimed to translate the ACP self-efficacy scale into Chinese (ACP-SEc) and measure its psychometric properties among clinical physicians. Method: The original scale was translated by literal translation, synthesis, and reverse translation, according to Brislin's translation model. Seven experts were invited to further revise the scale and evaluate the content validity. 348 physicians were conveniently sampled to evaluate the reliability and validity of the scale from May to June 2021 in 7 tertiary hospitals. Results: The ACP-SEc contained 17 items, 1 dimension, with a total score of 17 to 85 points. In this study, the critical ratios of the items ranged from 12.533 to 23.306, the item-total correlation coefficients ranged from 0.619 to 0.839. The item-content validity index ranged from 0.86 to 1.00, and the average scale-level content validity index was 0.98. In total, 75.507% of the total variance was explained by 1 common factor. The results of confirmatory factor analysis showed that the fitting indices of the modified model were desirable. The ACP-SEc was moderately correlated with General Self-Efficacy Scale (r = 0.675, P < .001), and it differentiated between physician groups based on the knowledge level of ACP, palliative care or ACP-related training experience, attitude toward ACP, willingness to initiate ACP discussions with patients, and experience of discussing ACP with family and friends, willingness to initiate ACP discussions with family and friends (P <.05). The total Cronbach's α and test-retest reliability of the scale were .960 and .976, respectively. Conclusion: The ACP-SEc shows good reliability and validity, and it can be used to assess the ACP self-efficacy level of physicians.

Thailand's experience in Advance Care Planning

In 2007, Thailand enacted the National Health Act, which contains the Advance Directive (Section 12). Even though the Act was enacted nearly sixteen years ago, physicians have not fully adopted it, limiting the number of patients who can benefit from the Advance Directive. Thai culture values the role of extended family in end-of-life planning, which is frequently marked by a conspiracy of silence (inability to discuss end-of-life issues), so patients may have limited opportunities to participate in decision-making and care planning. Thailand introduced a Palliative Care Policy in 2014. The inclusion of palliative care in the health service plan is the most crucial factor for palliative care provision. Through health inspections, the Ministry of Public Health supervises, monitors, and evaluates the management of the National Palliative Care Program. Advance Care Planning (ACP) and three other major KPIs were to be included in health inspections by 2020. In 2021, the Office of the National Health Commission implemented ACP, including the formation of (a) a committee to create a national ACP form and standard operating procedures and (b) a steering committee to oversee the nationwide implementation of ACP.

A study of end-of-life care communication and decision-making in China by exploring filial piety and medical information concealment

Abstract Objectives This paper examines end-of-life care communication and decision-making in mainland China by exploring their connection with filial piety and the concealment of medical information from patients by their families. Methods A textual analysis was performed by utilizing descriptive information from 349 semi-structured interviews with family and professional caregivers between 2021 and 2023 in 15 Chinese provinces. In addition to a word search for filial piety and the concealment of medical information from patients by their families, this study features seven personal accounts. Results Of all the interviews, 26.9 % (303 mentions) and 11.7 % (86 mentions) contain statements about filial piety and the concealment of medical information, respectively. The interviews suggest that the autonomy of elderly patients is suspended when disclosure of medical information and decisions for end-of-life care are controlled by family members – in particular, adult children out of a strong sense of filial piety. Conclusions The authors recommend advance care planning (ACP) as a structured approach to discussing the patient’s care preferences near the end of life. In China, relational autonomy is a key to such approach, with culturally sensitive dialogues toward building a consensus among patients, relatives, and medical staff. Only then could end-of-life care place individual agency on par with family responsibility motivated by filial piety. China can look to other Asian countries and territories for family-centered ACP experiences in embracing the inseparable role of family in end-of-life care decisions to guide its implementation of the recent Shenzhen legislation and more patient-oriented practices going forward.

How can advance care planning support hope in patients with advanced cancer and their families: A qualitative study as part of the international ACTION trial.

Clinicians' fears of taking away patients' hope is one of the barriers to advance care planning (ACP). Research on how ACP supports hope is scarce. We have taken up the challenge to specify ways in which ACP conversations may potentially support hope. In an international qualitative study, we explored ACP experiences of patients with advanced cancer and their personal representatives (PRs) within the cluster-randomised control ACTION trial. Using deductive analysis of data obtained in interviews following the ACP conversations, this substudy reports on a theme of hope. A latent thematic analysis was performed on segments of text relevant to answer the research question. Twenty patients with advanced cancer and 17 PRs from Italy, the Netherlands, Slovenia, and the United Kingdom were participating in post-ACP interviews. Three themes reflecting elements that provide grounds for hope were constructed. ACP potentially supports hope by being (I) a meaningful activity that embraces uncertainties and difficulties; (II) an action towards an aware and empowered position; (III) an act of mutual care anchored in commitments. Our findings on various potentially hope supporting elements of ACP conversations provide a constructive way of thinking about hope in relation to ACP that could inform practice.

Advance Care Planning Experiences Among Sexual and Gender Minority People

Advance care planning (ACP) can promote patient-centered end-of-life (EOL) care and is intended to ensure that medical treatments are aligned with patient's values. Sexual and gender minority (SGM) people face greater discrimination in health care settings compared with heterosexual, cisgender people, but it is unknown whether such discrimination occurs in ACP and how it might affect the ACP experiences of SGM people. To increase understanding of barriers and facilitators of ACP facing SGM individuals. This mixed-methods national study of ACP included a telephone survey of self-identified SGM and non-SGM participants in a nationally representative sample drawn from a larger omnibus national panel by SSRS. Qualitative interviews were conducted with a subset of survey participants who identified as SGM. Data were collected from October 2020 to March 2021. Self-identified SGM. The survey included 4 items from the validated ACP Engagement Survey, adapted to capture experiences of discrimination. Interviews asked about participants' experiences with ACP, including the appointment of medical decision-makers, sharing preferences, and experiences within the health care system more broadly. A total of 603 adults participated in the survey, with 201 SGM individuals (mean [SD] age, 45.7 [18.7] years; 101 [50.2%] female; 22 [10.9%] Black, 37 [18.4%] Hispanic, and 140 [69.7%] White individuals) and 402 non-SGM individuals (mean [SD] age, 53.7 [19.2] years; 199 [49.5%] female; 35 [8.7%] Black, 41 [10.2%] Hispanic, and 324 [80.6%] White individuals). Regarding reasons for not completing ACP, SGM respondents, compared with non-SGM respondents, were more likely to say "I don't see the need" (72 [73.5%] vs 131 [57.2%], P = .006) and "I feel discriminated against by others" (12 [12.2%] vs 6 [2.6%], P < .001). Of 25 completed interviews among SGM participants, 3 main themes were identified: how fear and experiences of discrimination affect selection of clinicians and whether to disclose SGM identity; concerns about whether EOL preferences and medical decision-makers would be supported; and a preference to discuss EOL decisions and values outside of clinical settings. This study found that fear of disclosing sexual orientation or gender identity information and discrimination are important barriers to ACP for SGM in clinical settings, but discussions of preferences and values still occur between many SGM people and medical decision-makers. More SGM-specific patient-centered care might better support these discussions within the health care system. Furthermore, health systems can facilitate improved engagement by supporting clinician sensitivity training, including guidance on documentation and requirements.

Is This ACP? A Focus Group Study of Patient Experiences of Advance Care Planning.

To date, most research on patients' experiences with advance care planning (ACP) focuses on motivations to engage in discussions and how patients prepare. Gaps remain in understanding how non-critically ill Medicare patients perceive ACP encounters, including how they characterize positive and negative experiences with ACP. Understanding these patients' perceptions is imperative as Medicare has sought to incentivize provision of ACP services via two billing codes in 2016. Qualitative focus group study. Thematic analysis was performed to assess participants ACP experience. Medicare beneficiaries who had engaged in or were billed for ACP. Seven focus groups were conducted with 34 Medicare beneficiaries who had engaged in ACP across 5 US health systems. Participants described a spectrum of perceptions regarding ACP, and a range of delivery approaches, including group ACP, discussions with specialists during serious illness, and ACP in primary care settings during wellness visits. Despite being billed for ACP or having ACP services noted in their medical record, many did not recognize that they had engaged in ACP, expressed lack of clarity over the term "ACP," and were unaware of the Medicare billing codes. Among participants who described quality patient-centered ACP experiences, three additional themes were identified: trusted and established patient/clinician relationships, transparent communication and documentation, and an understanding that ACP is revisable. Participants offered recommendations for clinicians and health systems to improve the patient ACP experience. Findings include actionable steps to promote patient-centered ACP experiences, including clinician training to support improved communication and facilitating shared decision-making, allocating sufficient clinical time for discussions, and ensuring that documentation of preferences is clear and accessible. Other approaches such as group ACP and ACP navigators may help to support patient interests within clinical constraints and need to be further explored.

How Acculturation Influences Attitudes about Advance Care Planning and End-of-Life Care among Chinese Living in Taiwan, Hong Kong, Singapore, and Australia

Background: Understanding attitudes towards life and death issues in different cultures is critical in end-of-life care and the uptake of advance care planning (ACP) in different countries. However, existing research suffers from a lack of cross-cultural comparisons among countries. By conducting this comparative study, we hope to achieve a clear understanding of the linkages and differences among healthcare cultures in different Chinese societies, which may serve as a reference for promoting ACP by considering cultural differences. Methods: Our researchers recruited Chinese adults who could communicate in Mandarin and lived in metropolitan areas in Taiwan, Hong Kong, Singapore, and Australia. Focus group interviews were conducted, and the interview contents were recorded and subjected to thematic analysis. Results: Between June and July 2017, 14 focus groups with 111 participants were conducted in four regions. With traditional Chinese attitudes towards death as a taboo, many participants felt it would be challenging to discuss ACP with elderly family members. Most participants also desire to avoid suffering for the self and family members. Although the four regions’ participants shared a similar Chinese cultural context, significant regional differences were found in the occasions at which participants would engage in end-of-life discussions and select settings for end-of-life care. By contrast, participants from Singapore and Australia exhibited more open attitudes. Most participants from Taiwan and Hong Kong showed a preference for end-of-life care at a hospital. Conclusions: The developmental experiences of ACP in Western countries, which place a strong emphasis on individual autonomy, cannot be directly applied to family-centric Asian ones. Healthcare professionals in Asian societies should make continuous efforts to communicate patient status to patients and their family members to ensure family involvement in decision-making processes.

Advance Care Planning Needs in Idiopathic Pulmonary Fibrosis: A Qualitative Study.

Introduction:Advance care planning is recommended in chronic respiratory diseases, including Idiopathic Pulmonary Fibrosis. In practice, uptake remains low due to patient, physician and system-related factors, including lack of time, training and guidance on timing, components and content of conversations. Our aim was to explore perspectives, experiences and needs to inform a framework.Methods:We conducted a qualitative study in western Canada, using semi-structured interviews and inductive analysis. Patient, caregiver and health care professional participants described advance care planning experiences with Idiopathic Pulmonary Fibrosis.Results:Twenty participants were interviewed individually: 5 patients, 5 caregivers, 5 home care and 5 acute care health care professionals. Two categories, perceptions and recommendations, were identified with themes and subthemes. Participant perceptions were insufficient information and conversations occur late. Recommendations were: have earlier conversations; have open conversations; provide detailed information; and plan for end-of-life. Patients and caregivers wanted honesty, openness and clarity. Professionals related delayed timing to poor end-of-life care and distressing deaths. Home care professionals described comfort with and an engaged approach to advance care planning. Acute care professionals perceived lack of clarity of roles and described personal, patient and caregiver distress.Interpretation:Analysis of diverse experiences provided further understanding of advance care planning in Idiopathic Pulmonary Fibrosis. Advance care planning is desired by patients and caregivers early in their illness experience. Health care professionals described a need to clarify role, scope and responsibility. Practical guidance and training must be available to care providers to improve competency and confidence in these conversations.

A Limited Opportunity: COVID-19 and Promotion of Advance Care Planning.

Background: Little is known about how COVID-19 has influenced the role of family caregivers in advance care planning (ACP).Objectives: To explore the experiences of family caregivers and ACP in the United States during the COVID-19 pandemic.Design: Exploratory sequential mixed-methods design of caregiver characteristics and pandemic response to ACP.Settings/Subjects: Family caregivers of care recipients with varied caregiving needs (dementia, mental illness, etc.).Measurements: Quantitative survey was done of fixed-choice questions of 82 caregivers. Semistructured qualitative telephone interviews were performed of a subsample of participants (n = 28).Results: Some (19%) of family caregivers revisited or updated advance directives of care recipients and/or had some type of contingency plan (33%) if they were to become ill. We identified three barriers caregivers faced during the pandemic that may have limited their engagement with ACP.Conclusions: Family caregivers need education regarding ACP and specific resources that can guide and support them through the process of ACP, for both themselves and care recipients.

Deficits in Advance Care Planning for Patients With Decompensated Cirrhosis at Liver Transplant Centers

The burden of end-of-life care for patients with cirrhosis is increasing in the US, and most of these patients, many of whom are not candidates for liver transplant, die in institutions receiving aggressive care. Advance care planning (ACP) has been associated with improved end-of-life outcomes for patients with other chronic illnesses, but it has not been well-characterized in patients with decompensated cirrhosis. To describe the experience of ACP in patients with decompensated cirrhosis at liver transplant centers. For this multicenter qualitative study, face-to-face semistructured interviews were conducted between July 1, 2017, and May 30, 2018, with clinicians and patients with decompensated cirrhosis at 3 high-volume transplant centers in California. Patient participants were adults and had a diagnosis of cirrhosis, at least 1 portal hypertension-related complication, and current or previous Model for End-Stage Liver Disease with sodium score of 15 or higher. Clinician participants were health care professionals who provided care during the illness trajectory. Experiences with ACP reported by patients and clinicians. Participants were asked about the context, behaviors, thoughts, and decisions concerning elements of ACP, such as prognosis, health care preferences, values and goals, surrogate decision-making, and documentation. The study included 42 patients (mean [SD] age, 58.2 [11.2] years; 28 men [67%]) and 46 clinicians (13 hepatologists [28%], 11 transplant coordinators [24%], 9 hepatobiliary surgeons [20%], 6 social workers [13%], 5 hepatology nurse practitioners [11%], and 2 critical care physicians [4%]). Five themes that represent the experiences of ACP were identified: (1) most patient consideration of values, goals, and preferences occurred outside outpatient visits; (2) optimistic attitudes from transplant teams hindered the discussions about dying; (3) clinicians primarily discussed death as a strategy for encouraging behavioral change; (4) transplant teams avoided discussing nonaggressive treatment options with patients; and (5) surrogate decision makers were unprepared for end-of-life decision-making. This study found that, despite a guarded prognosis, patients with decompensated cirrhosis had inadequate ACP throughout the trajectory of illness until the end of life. This finding may explain excessively aggressive life-sustaining treatment that patients receive at the end of life.

Advance Care Planning in Patients with Decompensated Cirrhosis at Liver Transplant Centers: A Qualitative Study (SCI944)

1.Describe the experience of advance care planning at liver transplant centers from the perspectives of patients.2.Describe the experience of advance care planning at liver transplant centers from the perspectives of providers. In the United States, patients with decompensated cirrhosis (DC) receive burdensome, costly care at the end of life that may not be consistent with their wishes. Advance care planning (ACP) is a process that supports adults in understanding and sharing their values, goals, and preferences regarding future medical care, but little is known about how ACP occurs in patients with DC. Our aim was to explore the experience of ACP in patients with DC at liver transplant (LT) centers. We conducted semi-structured interviews with 42 patients with DC and 46 LT providers across three LT centers in Los Angeles between July 2017 and May 2018. Audio-files were professionally transcribed. Two qualitative researchers developed a codebook corresponding to three major domains of ACP (prognosis; discussing values, goals and preferences; and surrogate decision makers [SDM]) and assigned codes to all transcripts. Data were imported to NVivo 12. “Pile-sorting” was used to generate themes. Providers frequently expressed prognosis to patients in terms of their chances of receiving a transplant but delayed conversations about death until the end of life (EOL). Patients often contemplated death, but seldom discussed these concerns with providers. Many patients engaged in discussions with family members about their values, goals, and preferences for EOL care. However, discussions were not initiated by LT providers, who found discussing limits to aggressive care was inconsistent with LT. Most patients reported having designated an SDM though only 5 (12%) had an available advance directive in their medical record. Providers engaged in discussions about SDMs when patients were hospitalized, whereas social workers discussed this routinely in all venues (Figure 1). Please contact first author for figure. Patients with DC performed components of ACP independently of providers. Providers rarely initiated conversations until patients were dying.

Advance Care Planning Among Older Adults of Turkish Origin in Belgium: Exploratory Interview Study

ContextAlthough conversations about future medical treatment and end-of-life care are considered to be important, ethnic minorities are much less engaged in advance care planning (ACP). ObjectivesTo explore ACP knowledge, experiences, views, facilitators, and barriers among older adults of Turkish origin in Belgium. MethodsThis qualitative study was based on constant comparative analysis of semistructured interview content. Participants were 33 older adults (aged 65–84 years; mean, 71.7 years; median, 74.5 years) of Turkish origin living in Belgium. ResultsDespite unfamiliarity with the term ACP in this sample, several participants had engaged in some ACP behaviors. Respondents considered ACP to be useful and were ready to engage in conversations about it. The most commonly mentioned facilitator was the provision of tailored information about ACP. Other facilitators included concerns about future care needs, increasing awareness among respondents' children about the advantages of ACP, and respondents' desire to avoid “burdening” their children. The most commonly mentioned barrier was respondents' lack of knowledge about ACP. Other barriers were language issues, a lack of urgency about ACP discussion, reliance on familial support, and older adults’ fear of triggering negative emotions in themselves and their children. ConclusionsThe provision of tailored information about ACP to older adults of Turkish origin in Belgium and the promotion of awareness about the importance of ACP among their children (when patients desire), as well as the use of professional interpreters, could facilitate ACP engagement in this population.

Identifying barriers and facilitators to implementing advance care planning in prisons: a rapid literature review

BackgroundLimited information is available describing advance care planning (ACP) within correctional facilities, despite its increasing relevance due to the ageing population in prisons and the high rates of complex medical comorbidities. In Western countries, self-determination with respect to making future medical decisions is a human right that prisoners do not lose when they are remanded into custody. ACP enables individuals to plan for their health and personal care so their values, beliefs and preferences are made known to inform future decision-making, for a time when they can no longer communicate their decisions. This paper examines the limited academic literature relating to ACP within prisons to identify barriers and facilitators that influence the uptake of ACP and advance care directive (ACD) documentation. Common themes related to ACP in a correctional setting were extracted and synthesised to produce a high-level analysis of barriers and facilitators influencing ACP uptake for prisoners within a correctional setting.ResultsSix articles met the selection criteria and reported on the experience of ACP and ACDs in prisons; five from the United States of America and one from Switzerland. Three dominant themes were identified, with related subthemes: system-level factors, attitudes and perceptions, and ACP knowledge and comprehension. Barriers to ACP and ACD implementation were more prominent in articles than facilitators.ConclusionsLimited academic literature regarding the implementation and experience of ACP in prisons is available. The dominance of barriers identified in studies highlights key challenges for improving ACP uptake in correctional settings. Further research is required to understand the barriers, enablers, and attitudes to ACP in prisons.

Assessment of Bereaved Caregiver Experiences of Advance Care Planning for Children With Medical Complexity

Advance care planning (ACP) is the process of discussing values and preferences for care to help inform medical decision-making. Children with medical complexity (CMC) often have a shortened life span with an unpredictable clinical course and timing of death; however, there is a paucity of literature that describes the experience of ACP from the perspective of bereaved family caregivers of CMC. To explore the experiences of bereaved family caregivers with ACP for CMC. This qualitative study included 12 interviews with 13 bereaved family caregivers of CMC whose deaths had occurred in the 5 years before study commencement (2013-2018). Participants were recruited at a single tertiary care pediatric center; CMC were treated by the Complex Care or Long-term Ventilation clinic in Toronto, Ontario, Canada. Data were collected from July to October 2018. Thematic analysis with an inductive approach was used. Qualitative interviews were conducted using purposive sampling of bereaved family caregivers using semistructured interviews that were recorded and transcribed. Interviews were conducted until saturation was reached. Transcripts were analyzed to create themes that characterized caregiver experiences with ACP. A total of 13 family caregivers were interviewed in 12 interviews, all of whom were parents (12 [92%] women, 1 [8%] man) of a deceased child (aged 7 months to 12 years). Themes were divided in the 3 following categories, which align with the Donabedian model for health service quality: (1) structure of care, (2) ACP process, and (3) end-of-life experience. Notable subthemes for this population included the importance of accounting for parental expertise in the child's care, recurrent experiences with life-threatening events, relative shock of the timing of death, and the multiple losses that caregivers experienced. In this study, parental experiences revealed that there are key aspects of the structure of the child's care, process around ACP, and end-of-life care experiences that provide important reflections on ACP that warrant future study.

Toward an Understanding of Advance Care Planning in Children With Medical Complexity.

Children with medical complexity (CMC) often have multiple life-limiting conditions with no unifying diagnosis and an unclear prognosis and are at high risk for morbidity and mortality. Advance care planning (ACP) conversations need to be uniquely tailored to this population. Our primary objective for this study was to develop an in-depth understanding of the ACP experiences from the perspectives of both parents and health care providers (HCPs) of CMC. We conducted 25 semistructured interviews with parents of CMC and HCPs of various disciplines from a tertiary pediatric hospital. Interview guide questions were focused on ACP, including understanding of the definition, positive and negative experiences, and suggestions for improvement. Interviews were conducted until thematic saturation was reached. Interviews were audio recorded, transcribed verbatim, coded, and analyzed using content analysis. Fourteen mothers and 11 HCPs participated in individual interviews. Interviews revealed 4 major themes and several associated subthemes (in parentheses): (1) holistic mind-set, (2) discussion content (beliefs and values, hopes and goals, and quality of life), (3) communication enhancers (partnerships in shared decision-making, supportive setting, early and ongoing conversations, consistent language and practice, family readiness, provider expertise in ACP discussions, and provider comfort in ACP discussions), and (4) the ACP definition. Family and HCP perspectives revealed a need for family-centered ACP for CMC and their families. Our results aided the development of a family-centered framework to enhance the delivery of ACP through a holistic mind-set, thoughtful discussion content, and promoting of conversation enhancers.