The effectiveness of a virtual reality teaching module on advance care planning and advance decision for medical professionals.

BACKGROUND: The concepts of advance care planning (ACP) and advance decisions/directives (ADs) are widely recognized around the world. The Patient Right to Autonomy Act in Taiwan, the first of its kind in Asia, went into effect in 2019. However, a lack of knowledge and confidence regarding ACP and ADs is a barrier for medical professionals in discussing ACP and ADs with their patients. In addition, in Asian countries, physicians tend to make family-centered decisions, which influence how they can implement ADs. METHODS: Virtual reality (VR) is known for its immersive and interactive simulation experience and can upgrade medical education. We developed a VR teaching module to help medical professionals better understand ACP and ADs, with assessment tools integrated into the module. The participants were asked to answer seven knowledge items embedded in the module and fill out the surveys regarding attitudes toward ACP and ADs and confidence in implementing ADs before and after the module. They also reported behaviors related to ADs before and three months after the VR experience. RESULTS: From July 2020 to June 2022, 30 physicians and 59 nurses joined the study, and 78.7% of them had no prior experience in hospice care. After learning from the VR module, all 89 participants were able to answer all seven items correctly. The results showed a slightly more positive attitude toward ACP and ADs (scores: 32.29 ± 3.80 versus 33.06 ± 3.96, p < .05) and more confidence in implementing ADs (scores: 13.96 ± 2.68 versus 16.24 ± 2.67, p < .001) after the VR module. Changes in AD-related behaviors (scores: 11.23 ± 4.01 versus 13.87 ± 4.11, p < .001) were also noted three months after the VR experience. CONCLUSIONS: This study found that medical professionals may have better knowledge of ACP and ADs, slightly improved attitudes toward ACP and ADs, and greater confidence in implementing ADs after experiencing the VR module. Most importantly, the findings suggested that using a VR format may help motivate medical professionals to perform essential behaviors related to ADs, including introducing ADs to their patients and discussing ADs with their own family.

[Barriers perceived by advance care planning (ACP) facilitators in nursing and welfare professions in implementing ACP: An online survey].

AIM: This study aimed to elucidate the barriers perceived by Advance Care Planning (ACP) facilitators in nursing and welfare professions when implementing ACP in practice. METHODS: An online survey using Google Forms was conducted between December 2021 and January 2022. The survey targeted 220 individuals, including 82 who completed the Hiroshima Prefecture ACP Promotion Training in 2020 and 138 ACP Promotion Collaborators in Fukuyama City, Hiroshima Prefecture. In addition to the respondents' attributes, the survey asked about the importance of 37 items related to barriers to ACP implementation, using a 7-point scale. We compared two groups: nurses and physicians ("nurses/physicians") and other medical and nursing care professionals ("nursing care professionals, etc."). RESULTS: Responses were obtained from 67 participants (response rate: 34.4%). The barriers to ACP perceived by nursing care professionals were as follows: 1) lack of knowledge about ACP, 2) belief that other professions are more suitable for implementing ACP than themselves, and 3) difficulty in realizing intentions due to institutional and environmental factors. Nurses and physicians perceived lack of time as an important barrier. Measures such as 1) clarifying how different professions should be involved in ACP, 2) expanding educational opportunities tailored to each profession, 3) utilizing tools to support the decision-making process in ACP, and 4) establishing an information-sharing system infrastructure are considered to be effective in promoting the implementation of ACP by facilitators in the nursing and welfare professions. CONCLUSIONS: By implementing measures to address the barriers identified in this study, it is expected that the practice of ACP by facilitators in nursing and welfare professions will be promoted, and ACP will become more widespread in the community.

Exploring knowledge, attitude, and intention towards advance care planning, advance directive, and the patient self-determination act among hemodialysis patients.

BACKGROUND: Hemodialysis holds the highest incidence and prevalence rate in Taiwan globally. However, the implementation of advance care planning (ACP), advance directives (AD), and patient self-determination acts (PSDA) remains limited. Our objective was to examine the current status of ACP, AD and PSDA and potential opportunities for enhancement. METHODS: We developed a novel questionnaire to assess individuals' knowledge, attitudes, and intentions regarding ACP, AD, and PSDA. We also collected baseline characteristics and additional inquiries for correlation analysis to identify potential factors. Student's t-test and Analysis of Variance were employed to assess significance. RESULTS: Initially, a cohort of 241 patients was initially considered for inclusion in this study. Subsequently, 135 patients agreed to participate in the questionnaire study, resulting in 129 valid questionnaires. Among these respondents, 76 were male (59.9%), and 53 were female (41.1%). Only 13.2% had signed AD. A significant portion (85.3%) indicated that they had not discussed their dialysis prognosis with healthcare providers. Additionally, a mere 14% engaged in conversations about life-threatening decisions. Ninety percent believed that healthcare providers had not furnished information about ACP, and only 30% had discussed such choices with their families. The findings revealed that the average standardized score for ACP and AD goals was 84.97, while the attitude towards PSDA received a standardized score of 69.94. The intention score stood at 69.52 in standardized terms. Potential candidates for ACP initiation included individuals aged 50 to 64, possessing at least a college education, being unmarried, and having no history of diabetes. CONCLUSION: Patients undergoing hemodialysis exhibited a significant knowledge gap concerning ACP, AD, and the PSDA. Notably, a substantial number of dialytic patients had not received adequate information on these subjects. Nevertheless, they displayed a positive attitude, and a considerable proportion expressed a willingness to sign AD. It is imperative for nephrologists to take an active role in initiating ACP discussions with patients from the very beginning.

Challenges to Shared Decision Making About Treatment of Advanced CKD: A Qualitative Study of Patients and Clinicians.

RATIONALE & OBJECTIVE: Greater understanding of the challenges to shared decision making about treatment of advanced chronic kidney disease (CKD) is needed to support implementation of shared decision making in clinical practice. STUDY DESIGN: Qualitative study. SETTING & PARTICIPANTS: Patients aged≥65 years with advanced CKD and their clinicians recruited from 3 medical centers participated in semi-structured interviews. In-depth review of patients' electronic medical records was also performed. ANALYTICAL APPROACH: Interview transcripts and medical record notes were analyzed using inductive thematic analysis. RESULTS: Twenty-nine patients (age 73±6 years, 66% male, 59% White) and 10 of their clinicians (age 52±12 years, 30% male, 70% White) participated in interviews. Four themes emerged from qualitative analysis: (1) competing priorities-patients and their clinicians tended to differ on when to prioritize CKD and dialysis planning above other personal or medical problems; (2) focusing on present or future-patients were more focused on living well now while clinicians were more focused on preparing for dialysis and future adverse events; (3) standardized versus individualized approach to CKD-although clinicians tried to personalize care recommendations to their patients, the patients perceived their clinicians as taking a monolithic approach to CKD that was predicated on clinical practice guidelines and medical literature rather than the patients' lived experiences with CKD and personal values and goals; and (4) power dynamics-patients described cautiously navigating a power differential in their therapeutic relationship with their clinicians whereas clinicians seemed less attuned to these power dynamics. LIMITATIONS: Thematic saturation was based on patient interviews. Themes presented might incompletely reflect clinicians' perspectives. CONCLUSIONS: Efforts to improve shared decision making for treatment of advanced CKD will likely need to explicitly address differences between patients and their clinicians in approaches to decision making about treatment of advanced CKD and perceived power imbalances in the therapeutic relationship.

Advance Care Planning Coaching in CKD Clinics: A Pragmatic Randomized Clinical Trial.

RATIONALE & OBJECTIVE: Although guidelines recommend more and earlier advance care planning (ACP) for patients with chronic kidney disease (CKD), scant evidence exists to guide incorporation of ACP into clinical practice for patients with stages of CKD prior to kidney failure. Involving nephrology team members in addition to primary care providers in this important patient-centered process may increase its accessibility. Our study examined the effect of coaching implemented in CKD clinics on patient engagement with ACP. STUDY DESIGN: Multicenter, pragmatic randomized controlled trial. SETTING & PARTICIPANTS: Three CKD clinics in different states participated: 273 patients consented to participate, 254 were included in analysis. Eligible patients were 55 years or older, had stage 3-5 CKD, and were English speaking. INTERVENTION: Nurses or social workers with experience in nephrology or palliative care delivered individualized in-person ACP sessions. The enhanced control group was given Make Your Wishes About You (MY WAY) education materials and was verbally encouraged to bring their completed advance directives to the clinic. OUTCOME: Primary outcome measures were scores on a 45-point ACP engagement scale at 14 weeks and a documented advance directive or portable medical order at 16 weeks after enrollment. RESULTS: Among 254 participants analyzed, 46.5% were 65-74 years of age, and 54% had CKD stage 3. The coached patients scored 1.9 points higher at 14 weeks on the ACP engagement scale (ß = 1.87 [95% CI, 0.13-3.64]) adjusted for baseline score and site. Overall, 32.8% of intervention patients (41 of 125) had an advance directive compared with 17.8% (23 of 129) of patients in the control group. In a site-adjusted multivariable model, coached patients were 79% more likely to have a documented advance directive or portable medical order (adjusted risk ratio, 1.79 [95% CI, 1.18-2.72]), with the impact principally evident at only 1 study site. LIMITATIONS: Small number of study sites and possible unrepresentativeness of the broader CKD population by study participants. CONCLUSIONS: Individualized coaching may be effective in enhancing ACP, but its impact may be influenced by the health care environment where it is delivered. FUNDING: The Patrick and Catherine Weldon Donaghue Medical Research Foundation, via the Greater Value Portfolio. TRIAL REGISTRATION: Registered at ClinicalTrials.gov with study number NCT03506087.

The explorations of the awareness, contemplation, self-Efficacy, and readiness of advance care planning, and its predictors in Taiwanese patients while receiving hemodialysis treatment.

BACKGROUND: End-stage renal disease (ESRD) is a major chronic illness worldwide, and Taiwan reports one of the highest incidence rates of ESRD with 529 cases per million population (pmp). A number of patients with ESRD patients might require lifelong hemodialysis (HD) or peritoneal dialyses (PD). Due to the progression of dialysis, patients are likely to experience other chronic comorbidities, anxiety and depression, frequent hospitalizations, and higher rates of mortality compared to patients with other types of chronic illnesses. As a result, dialysis patients are prone to experience advance care planning (ACP) needs, such as whether they withdraw from receiving dialysis while approaching their end-of-life (EOL). Yet, existing studies have shown that dialysis patients seldom receive timely consultation regarding ACP and there are limited studies examining ACP amongst Taiwan HD patients. PURPOSE: The purpose of this study was to examine ACP awareness, contemplation, self-efficacy and readiness; and factors influencing ACP readiness. DESIGN: This cross-sectional descriptive study with convenience sampling was conducted in the out-patient HD unit at a regional teaching hospital in southern Taiwan. A total of 143 ESRD patients undergoing HD treatments were recruited. A 55-item ACP engagement survey containing the subscales of awareness, contemplation, self-efficacy, and readiness was employed. The data were analyzed with t-tests, one-way ANOVAs, Pearson's correlations and multiple regressions. RESULTS: The results of our investigation revealed that approximately half of the participants (n = 67, 46.9%) were not informed of ACP. Although they reported considering their EOL, medical decisions and desired care, they demonstrated significantly low self-efficacy in discussing ACP (t= -5.272, p < 0.001). HD duration influenced all four ACP subscales; religious beliefs significantly influenced ACP-self-efficacy and readiness; and marital status, education, and primary decision-maker status significantly influenced ACP-readiness. The predictors of ACP-readiness were high self-efficacy and being the primary decision-maker (Adjusted R2 61%). CONCLUSION: Most of the HD patients in this study had low ACP-awareness, contemplation, self-efficacy, and readiness, and most had not completed any ACP-related advance directives (AD). Healthcare professionals should proactively provide HD patients with ACP-related information and answer patients' and medical decision-makers' questions in a timely manner, thereby improving the quality of EOL care.

A scoping review of nurse-led advance care planning.

BACKGROUND: Advance care planning (ACP) supports persons at any age or health status to determine their values, goals, and preferences regarding future medical care. The American Nurses Association endorses nurses to facilitate ACP to promote patient- and family-centered care. PURPOSE: This project reviewed and synthesized literature on nurse-led ACP training models. METHODS: A scoping review used the Arksey and O'Malley Framework to identify: (a) ACP training model type, (b) nurse-led ACP recipients, (c) ACP in special populations, (d) ACP outcomes. FINDINGS: Of 33 articles reviewed, 19 included 11 established models; however, the primary finding was lack of a clearly identified evidence-based nurse-led ACP training model. DISCUSSION: Nurses are integral team members, well positioned to be a bridge of communication between patients and care providers. This is a call to action for nurse leaders, researchers, educators to collaborate to identify and implement an evidence-based, effective nurse-led ACP training model.

Advancing Palliative Care in Patients With CKD: From Ideas to Practice.

A palliative approach to care focuses on what matters most to patients with life-limiting illness, including chronic kidney disease (CKD). Despite recent publication of related clinical practice guidelines in nephrology, there is limited information about how to practically implement these recommendations. In this Perspective, we describe our experience integrating a palliative approach within routine care of patients with CKD glomerular filtration rate categories 4 and 5 (G4-G5) across a provincial kidney care network during the past 15 years. The effort was led by a multidisciplinary group, tasked with building capacity and developing tools and resources for practical integration within a provincial network structure. We used an evidence-based framework that includes recommendations for 4 pillars of palliative care to guide our work: (1) patient identification, (2) advance care planning, (3) symptom assessment and management, and (4) caring of the dying patient and bereavement. Activities within each pillar have been iteratively implemented across all kidney care programs using existing committees and organizational structures. Key quality indicators were used to guide strategic planning and improvement. We supported culture change through the use of multiple strategies simultaneously. Altogether, we established and integrated palliative care activities into routine CKD G4-G5 care across the continuum from nondialysis to dialysis populations.

The Knowledge and Attitude Towards Advance Care Planning Among Chinese Patients with Advanced Cancer.

To describe the knowledge and attitude of Chinese patients with advanced cancer towards advanced care planning (ACP), a convenience sample of 275 patients with advanced cancer was recruited from a tertiary cancer hospital in Beijing, China, between February and December 2017. The multi-item questionnaire focused on patients' demographics, disease characteristics and knowledge about and attitude towards ACP and was administered to eligible patients. Descriptive statistics were performed. Most patients had never heard about ACP (82.2%) and had never talked about ACP (83.0%), but only a few (18.3%) were not willing to talk about ACP. A total of 67.8% patients chose to refuse resuscitation attempts or life-sustaining medical interventions, and 70.8% of patients hoped to have surrogate decision makers when they became unconscious. By binary logistic regression analysis, patients who were of greater age, female and living in urban areas preferred to refuse resuscitation attempts or life-sustaining medical interventions (OR = 1.023, P = 0.042; OR = 2.011, P = 0.020; OR = 0.254, P < 0.01); patients who had very rich or rich family economic status preferred to involve surrogate decision makers compared with patients of very poor family economic status (OR = 0.250, P = 0.011). There is a large gap between the knowledge about ACP and the expectation of implementing ACP in Chinese patients with advanced cancer. To develop culturally appropriate and individualized programmes to promote knowledge and implementation in practice of ACP among Chinese patients with advanced cancer and their relatives is still a significant challenge.

Medical Record Documentation of Goals-of-Care Discussions Among Older Veterans With Incident Kidney Failure.

RATIONALE & OBJECTIVE: Elicitation and documentation of patient preferences is at the core of shared decision making and is particularly important among patients with high anticipated mortality. The extent to which older patients with incident kidney failure undertake such discussions with their providers is unknown and its characterization was the focus of this study. STUDY DESIGN: Retrospective cohort study. SETTING & PARTICIPANTS: A random sample of veterans 67 years and older with incident kidney failure receiving care from the US Veterans Health Administration between 2005 and 2010. EXPOSURES: Demographic and facility characteristics, as well as predicted 6-month mortality risk after dialysis initiation and documentation of resuscitation preferences. OUTCOMES: Documented discussions of dialysis treatment and supportive care. ANALYTICAL APPROACH: We reviewed medical records over the 2 years before incident kidney failure and up to 1 year afterward to ascertain the frequency and timing of documented discussions about dialysis treatment, supportive care, and resuscitation. Logistic regression was used to identify factors associated with these documented discussions. RESULTS: The cohort of 821 veterans had a mean age of 80.9±7.2 years, and 37.2% had a predicted 6-month mortality risk>20% with dialysis. Documented discussions addressing dialysis treatment and resuscitation were present in 55.6% and 77.1% of patients, respectively. Those addressing supportive care were present in 32.4%. The frequency of documentation varied by mortality risk and whether the patient ultimately started dialysis. In adjusted analyses, the frequency and pattern of documentation were more strongly associated with geographic location and receipt of outpatient nephrology care than with patient demographic or clinical characteristics. LIMITATIONS: Documentation may not fully reflect the quality and content of discussions, and generalizability to nonveteran patients is limited. CONCLUSIONS: Among older veterans with incident kidney failure, discussions of dialysis treatment are decoupled from other aspects of advance care planning and are suboptimally documented, even among patients at high risk for mortality.

Experiences of US Nephrologists in the Delivery of Conservative Care to Patients With Advanced Kidney Disease: A National Qualitative Study.

RATIONALE & OBJECTIVE: It is relatively unusual for US patients with advanced chronic kidney disease (CKD) to forgo initiation of maintenance dialysis. Our objective was to describe practice approaches of US nephrologists who have provided conservative care for members of this population. STUDY DESIGN: Qualitative study using semi-structured interviews. SETTING & PARTICIPANTS: A national sample of 21 nephrologists experienced in caring for patients with advanced CKD who decided not to start dialysis. ANALYTICAL APPROACH: Grounded theory methods to identify dominant themes reflecting nephrologists' experiences with and approaches to conservative care for patients with advanced CKD. RESULTS: Nephrologists who participated in this study were primarily from academic practices (n=14) and urban areas (n=15). Two prominent themes emerged from qualitative analysis reflecting nephrologists' experiences with and approaches to conservative care: (1) person-centered practices, which described a holistic approach to care that included basing treatment decisions on what mattered most to individual patients, framing dialysis as an explicit choice, being mindful of sources of bias in medical decision making, and being flexible to the changing needs, values, and preferences of patients; and (2) improvising a care infrastructure, which described the challenges of managing patients conservatively within health systems that are not optimally configured to support their needs. Participating nephrologists described cobbling together resources, assuming a range of different health care roles, preparing patients to navigate health systems in which initiation of dialysis served as a powerful default, and championing the principles of conservative care among their colleagues. LIMITATIONS: The themes identified likely are not generalizable to most US nephrologists. CONCLUSIONS: Insights from a select group of US nephrologists who are early adopters of conservative care signal the need for a stronger cultural and health system commitment to building care models capable of supporting patients who choose to forgo dialysis.

The exploration of the knowledge, attitudes and practice behaviors of advanced care planning and its related predictors among Taiwanese nurses.

BACKGROUND: Despite the documented and well known patient benefits of ACP, the completion of ACP, only a minority of patients, during the advanced or EOL stage of their illnesses, receive such care. The misconceptions about ACP for healthcare providers, such as nurses, might become potential barriers to the effective implication of ACP. Also, from the transcultural perspective, it is evident essential to explore Taiwanese nurses' attitudes, knowledge, and actions of ACP. The purposes of this study were to explore the implication of ACP or hospice care for nurses caring for non-cancer chronic illness patients at a regional teaching hospital in Taiwan; and, to identify predictors of those nurses' knowledge, attitudes, and actions toward ACP. METHODS: This cross-sectional study with a purposive sample of 218 nurses was conducted at a teaching hospital in southern Taiwan. Structured questionnaires were employed and data were analyzed with descriptive statistics, t-test, one-way ANOVAs, Pearson's correlation and multiple regressions. RESULTS: 16.1% of Taiwanese physicians actively initiated ACP issues or conversations with patients or their family members. Nurses' attitudes toward ACP were fairly positive but their knowledge about ACP was insufficient and actions of ACP were not positively executed. The predictors of ACP-Knowledge (ACP-K) included position title, education hours and lacking of educational training. The predictors of ACP-Attitude (ACP-A) included ACP-K and "fear of patient or family member not accepting", whereas ACP-A, position title, "patients do not feel necessary" and "not sure physician's concern" were the predictors of ACP-Act. CONCLUSION: Continuous education and training for nurses regarding ACP needs to be improved by taking those predictors found in this current study into account, and more studies on the nurse's role in ACP also should be further examined. TRIAL REGISTRATION: KAFGH 106-012. Date of registration 1 May 2017.

Do older adults with Alzheimer's disease engage in estate planning and advance care planning preparation?

OBJECTIVES: This study investigated the estate planning and advance care planning (ACP) of older adults diagnosed with Alzheimer's disease (AD) for the presence of (1) a valid will, (2) a durable power of attorney for health care, and (3) a living will. METHOD: We analyzed 10,273 adults aged 65 and older from the 2012 Health and Retirement Study (HRS) using multilevel logistic regression. RESULTS: We found that a diagnosis of AD was significantly associated with the ACP variables. Older adults with AD were more likely to assign a durable power of attorney for health care and have a written living will than older adults without an AD diagnosis. However, we found no significant association between a diagnosis of AD and having a valid will. These findings were robust when adjusting for demographic and socioeconomic variables. Other factors decreased engagement in estate planning and ACP, including lower socioeconomic status, being male, and being a minority. CONCLUSION: Our findings suggest that a diagnosis of AD is associated with more engagement in ACP for individuals and their families, but important barriers exist for people with fewer resources.

An Interview Study of Patient and Caregiver Perspectives on Advance Care Planning in ESRD.

BACKGROUND: Advance care planning (ACP) empowers patients to consider and communicate their current and future treatment goals. However, it can be an emotionally charged process for patients with kidney disease and their caregivers. This study aimed to describe the perspectives and attitudes of patients with end-stage renal disease (ESRD) and their caregivers toward ACP. STUDY DESIGN: Qualitative study. SETTING & PARTICIPANTS: Patients with ESRD (n=24) and their caregivers (n=15) aged 36 to 91 years at various stages of ACP ("not commenced," "in progress," or "completed") from 3 renal services. METHODOLOGY: Semistructured interviews. ANALYTICAL APPROACH: Transcripts were analyzed using thematic analysis. RESULTS: 5 major themes were identified: articulating core values (avoiding futile and undignified treatment, reevaluating terms of dialysis, framing a life worth living, and refusing to be a burden), confronting conversations (signifying death and defeat, accepting inevitable death, and alleviating existential tension), negotiating mutual understanding (broaching taboos and assisting conflicted caregivers), challenging patient autonomy (family pressures to continue dialysis, grief diminishing caregivers' capacity, and leveraging support), and decisional disempowerment (lacking medical transparency and disappointment with clinical disinterest). LIMITATIONS: Only English-speaking patients/caregivers participated in the interview. CONCLUSIONS: ACP provides patients with ESRD and their caregivers a conduit for accepting and planning for impending death and to express treatment preferences based on self-dignity and value of living. However, ACP can be considered taboo, may require caregivers to overcome personal and decisional conflict, and may be complex if patients and caregivers are unable to accept the reality of the patient's illness. We suggest that ACP facilitators and clinicians make ACP more acceptable and less confrontational to patients and caregivers and that strategies be put in place to support caregivers who may be experiencing overwhelming grief or who have conflicting goals, particularly when they are called on to make end-of-life decisions.

[The consciousness survey and the effect of educational intervention of Advance Care Planning (ACP) including post-mortem to elderly residents living in old New Town of big city].

AIM: Awareness reform aims to enable survival in an aging society, and ultimately, improve healthcare. An ideal way to achieve this is by implementing Advance directive (Ad) and Advance Care Planning (ACP), which do not usually include postmortem events. This study aims to create opportunities for Ad and ACP to include the postmortem period as a trigger for this awareness reform. METHODS: We conducted an Ad/ACP enlightenment lecture, and a questionnaire survey pre- and post-lecture for the elderly in old New Town, which is known for its aging society. The questionnaire comprised 38 multiple-choice questions covering 6 themes assuming an advanced state of dementia. RESULTS: There were 35 participants (7 men and 22 women) aged 40-89 years. Several people left during the lecture, making it difficult to capture the precise transformation effect with regard to changing of mind. However, the effect of enlightenment was identified as a result of the consciousness survey. A statistically significant change in consciousness occurred in response to social contribution after death. Furthermore, notably more people wanted emergency transportation compared to those wanting resuscitation and extension of life. CONCLUSIONS: The medical treatment desired might vary over time. Even the desire for life extension may differ significantly among individuals. This survey indicated a divergent view between the general public and medical staff, regarding a series of medical actions. We must persistently promote opportunities for enlightenment in cooperation with the general public (i.e., the communities and families we serve).

Clinicians' Perspectives on Advance Care Planning for Patients With CKD in Australia: An Interview Study.

BACKGROUND: Advance care planning (ACP) empowers patients to consider and communicate their current and future treatment goals. However, ACP is not widely implemented in chronic kidney disease (CKD) care settings. This study aims to describe clinicians' beliefs, challenges, and perspectives of ACP in patients with CKD. STUDY DESIGN: Qualitative study. SETTING & PARTICIPANTS: Nephrologists (n=20), nurses (n=7), and social workers (n=4) with a range of experience in facilitating ACP for patients with CKD across Australia. METHODOLOGY: Semistructured interviews were digitally recorded and transcribed verbatim. ANALYTICAL APPROACH: Transcripts were analyzed using thematic analysis. RESULTS: 5 major themes were identified: facilitating informed decision making (avoiding preconceptions, conveying complete truths, focusing on supportive care, and synchronizing with evolving priorities), negotiating moral boundaries (contending with medical futility and respecting patient vs family autonomy), navigating vulnerable conversations (jeopardizing the therapeutic relationship, compromising professional confidence, emotionally invested, and enriching experiences), professional disempowerment (unsupportive culture, doubting logistical feasibility, and making uncertain judgments), and clarifying responsibilities (governing facilitation, managing tensions, and transforming multidisciplinary relationships). LIMITATIONS: Some findings may be specific to the Australian context. CONCLUSIONS: The tensions among themes reflect that ACP is paradoxically rewarding for clinicians because ACP empowers patients yet can expose personal and professional vulnerabilities. Clinicians believe that a more collaborative approach is needed, with increased efforts to identify the evolving and individualized needs and goals of patients with CKD. Models of ACP that address clinicians' personal and professional vulnerabilities when initiating ACP may foster greater confidence and cultural acceptance of ACP in the CKD setting.

Advance care planning and end-of-life decision making in dialysis: a randomized controlled trial targeting patients and their surrogates.

BACKGROUND: Few trials have examined long-term outcomes of advance care planning (ACP) interventions. We examined the efficacy of an ACP intervention on preparation for end-of-life decision making for dialysis patients and surrogates and for surrogates' bereavement outcomes. STUDY DESIGN: A randomized trial compared an ACP intervention (Sharing Patient's Illness Representations to Increase Trust [SPIRIT]) to usual care alone, with blinded outcome assessments. SETTING & PARTICIPANTS: 420 participants (210 dyads of prevalent dialysis patients and their surrogates) from 20 dialysis centers. INTERVENTION: Every dyad received usual care. Those randomly assigned to SPIRIT had an in-depth ACP discussion at the center and a follow-up session at home 2 weeks later. PRIMARY OUTCOMES: preparation for end-of-life decision making, assessed for 12 months, included dyad congruence on goals of care at end of life, patient decisional conflict, surrogate decision-making confidence, and a composite of congruence and surrogate decision-making confidence. SECONDARY OUTCOMES: bereavement outcomes, assessed for 6 months, included anxiety, depression, and posttraumatic distress symptoms completed by surrogates after patient death. PRIMARY OUTCOMES: adjusting for time and baseline values, dyad congruence (OR, 1.89; 95% CI, 1.1-3.3), surrogate decision-making confidence (ß=0.13; 95% CI, 0.01-0.24), and the composite (OR, 1.82; 95% CI, 1.0-3.2) were better in SPIRIT than controls, but patient decisional conflict did not differ between groups (ß=-0.01; 95% CI, -0.12 to 0.10). SECONDARY OUTCOMES: 45 patients died during the study. Surrogates in SPIRIT had less anxiety (ß=-1.13; 95% CI, -2.23 to -0.03), depression (ß=-2.54; 95% CI, -4.34 to -0.74), and posttraumatic distress (ß=-5.75; 95% CI, -10.9 to -0.64) than controls. LIMITATIONS: Study was conducted in a single US region. CONCLUSIONS: SPIRIT was associated with improvements in dyad preparation for end-of-life decision making and surrogate bereavement outcomes.

Talking about sensitive topics during the advance care planning discussion: A peek into the black box.

OBJECTIVE: Advance care planning (ACP) discussions are emphasized as a valuable way of improving communication about end-of-life care. Yet we have very little knowledge of what goes on during actual ACP discussions. The aim of our study was to explore how the sensitive topics of end-of-life decisions are addressed in concrete ACP discussions, with special focus on doctor-patient interactions. METHOD: Following a discourse-analysis approach, the study uses the concept of doctor and patient "voices" to analyze 10 directly observed and audiotaped ACP discussions among patients, relatives, and a physician, carried out in connection with a pilot study conducted in Denmark. RESULTS: Previous studies of directly observed patient-physician discussions about end-of-life care show largely ineffective communication, where end-of-life issues are toned down by healthcare professionals, who also tend to dominate the discussions. In contrast, the observed ACP discussions in our study were successful in terms of addressing such sensitive issues as resuscitation and life-prolonging treatment. Our analysis shows that patients and relatives were encouraged to take the stage, to reflect, and to make informed choices. Patients actively explored different topics and asked questions about their current situation, but some also challenged the concept of ACP, especially the thought of being able to take control of end-of-life issues in advance. SIGNIFICANCE OF RESULTS: Our analysis indicates that during discussions about sensitive end-of-life issues the healthcare professional will be able to pose and explore sensitive ACP questions in a straightforward manner, if the voices that express empathy and seek to empower the patient in different ways are emphasized.

Advance care planning for adults with CKD: a systematic integrative review.

BACKGROUND: Recent clinical practice guidelines have highlighted the importance of advance care planning (ACP) for improving end-of-life care for people with chronic kidney disease (CKD). STUDY DESIGN: We conducted a systematic integrative review of the literature to inform future ACP practice and research in CKD, searching electronic databases in April 2013. Synthesis used narrative methods. SETTING & POPULATION: We focused on adults with a primary diagnosis of CKD in any setting. SELECTION CRITERIA FOR STUDIES: We included studies of any design, quantitative or qualitative. INTERVENTIONS: ACP was defined as any formal means taken to ensure that health professionals and family members are aware of patients' wishes for care in the event they become too unwell to speak for themselves. OUTCOMES: Measures of all kinds were considered of interest. RESULTS: 55 articles met criteria reporting on 51 discrete samples. All patient samples included people with CKD stage 5; 2 also included patients with stage 4. Seven interventions were tested; all were narrowly focused and none was evaluated by comparing wishes for end-of-life care with care received. One intervention demonstrated effects on patient and family outcomes in the form of improved well-being and anxiety following sessions with a peer mentor. Insights from qualitative studies that have not been used to inform interventions include the importance of instilling patient confidence that their advance directives will be enacted and discussing decisions about (dis)continuing dialysis therapy separately from "aggressive" life-sustaining treatments (eg, ventilation). LIMITATIONS: Although quantitative and qualitative findings were integrated according to best practice, methods for this are in their infancy. CONCLUSIONS: Research on ACP in patients with CKD is limited, especially intervention studies. Interventions in CKD should attend to barriers and facilitators at the levels of patient, caregiver, health professional, and system. Intervention studies should measure impact on compliance with patient wishes for end-of-life care.

Palliative care in kidney transplant recipients with graft failure.

Kidney transplantation is the best renal replacement therapy for patients with end stage kidney disease. It provides longer patient survival and better quality of life than dialysis. The clinical course after kidney transplantation could be complex and variable. Patients may develop various complications or even kidney graft failure. Symptom burden related to uraemia in patients with graft failure, and the side-effects of immunosuppression, cause psychological distress and adversely affect the quality of life of patients. Treatment decisions in patients with graft failure can be challenging to patients and their caregivers. Renal palliative care is an emerging field, but its adoption remains relatively low among kidney transplant recipients with progressive graft failure. In this context, timely consideration and referral for palliative care can improve symptom burden, reduce stress in patients and their caregivers, and facilitate treatment goal setting and advanced care planning. Common barriers to bring palliative care to suitable patients include: (I) misconception in patients, caregivers and healthcare providers that palliative care means abandonment of life sustaining treatment; (II) over-optimistic prognostic assessment and over-aggressive management approach; (III) insufficient awareness and training in palliative care of healthcare professionals; (IV) inadequate access to and insufficient resources in palliative care. Enhanced training and awareness, and further studies, would be needed to optimize the decision process and delineate the benefit of palliative care, and to guide evidence-based practice in the transplant population.