Dignity-related distress and recall among alert, non-delirious critically ill patients.

OBJECTIVES: Critical illness is associated with multiple undesired impacts, including residual psychological distress, frequently associated with recollections of critical illness. Dignity-related distress is highly prevalent among the one-fifth of critically ill patients who are alert. The distress may be associated with unpleasant recollections of care. We examined whether patients at risk for dignity-related distress had recall of their reported distress approximately 1 week after assessment and whether this recall differed from another high-risk group, specifically patients undergoing dialysis for end-stage renal disease. METHODS: The prospective cohort study included patients with critical illness and patients with end-stage renal disease enrolled from intensive care units (ICUs) and dialysis units at 1 academic center. Distress was assessed using the Patient Dignity Inventory (PDI). Participants received in-patient or telephonic follow-up 7-10 days after the initial interaction. Follow-up encounters focused on recollection of key aspects of the interpersonal interaction as well as the content of the PDI. RESULTS: A total of 32 critically ill patients participated in initial assessment and follow-up. In total, 26 dialysis patients participated in both phases. The groups' demographics differed. Fifty percent (n = 16) of critically ill patients and 58% (n = 15) of dialysis patients reported a mean score per item of >1.6, corresponding with severe distress on the PDI. Among the ICU patients, the 95% upper 2-sided confidence interval for the median level of recall was commensurate with the participant having had no recall of the initial interview beyond remembering that there was an interview. The end-stage renal disease group did not demonstrate significantly better recall. SIGNIFICANCE OF RESULTS: Dignity-related distress is high in both critically ill patients and those with end-stage renal disease; however, recollection of assessment is poor in both groups. Any intervention designed to mitigate dignity-related distress will need either to be immediately deployable or not to be reliant upon recollection for impact.

Language in Bioethics: Beyond the Representational View.

Though assumptions about language underlie all bioethical work, the field has rarely partaken of theories of language. This article encourages a more linguistically engaged bioethics. We describe the tacit conception of language that is frequently upheld in bioethics-what we call the representational view, which sees language essentially as a means of description. We examine how this view has routed the field's theories and interventions down certain paths. We present an alternative model of language-the pragmatic view-and explore how it expands and clarifies traditional bioethical concerns. To lend concreteness, we apply the pragmatic view to a pervasive concept in bioethics and adjacent fields: decision making. We suggest that problems of the decision-making approach to bioethical issues are grounded in adherence to the representational view. Drawing on empirical work in surgery and critical care, we show how the pragmatic view productively reframes bioethical questions about how medical treatments are pursued.

Ethical and Professional Issues Encountered by Fourth-Year Medical Students during a Critical Care Clerkship before and during the COVID-19 Pandemic.

OBJECTIVES: The objective of this study was to describe ethical and professional issues encountered and the ethical and professional values cited by medical students during their critical care clerkship, with a comparison of issues encountered before and during the coronavirus disease 2019 (COVID-19) pandemic. METHODS: In this single-center, retrospective mixed-methods study, two investigators at a midwestern US academic medical center performed qualitative content analysis on reflections written by fourth-year medical students about ethical and professional issues encountered during their critical care rotations between March 2016 and September 2021. We also analyzed the ethical/professional values mentioned in their reflections. Descriptive and inferential (χ2) statistics were performed to examine differences in issues and values cited before and during the pandemic. RESULTS: Respondents highlighted several key themes identified in prior studies, including decision making (64.1%), communication between clinicians and families (52.2%), and justice-related issues (32.1%), as well as interdisciplinary communication (25.7%) and issues related to the role of students in the intensive care unit (6.1%). Six novel subthemes were identified in this group, predominantly related to resource availability and end-of-life care. Of 343 reflections, 69% were written before the pandemic. Analysis of ethical and professional issues before and during COVID were notable for several significant differences, including increased discussion of inadequate tools/supplies/equipment (1.3% before vs 17.6% during, P = 0.005) and/or access to care (3.9% before vs 17.6% during, P = 0.03) and increased concerns about the tension between law and ethics (21.2% before vs 41.2% during, P = 0.028). Primacy of patient welfare (49.8% before vs 47.2% during, P = 0.659) and patient autonomy (51.1% before vs 38.9% during, P = 0.036) were the most commonly cited ethical principles in both time frames, often discussed concurrently and in tension. CONCLUSIONS: Although the COVID-19 pandemic was associated with increased reflection by medical students about resources in the intensive care unit, their perception of ethical issues arising in critical illness remained largely focused on enduring challenges in shared decision-making. These findings should be considered when developing ethics curricula for critical care rotations.

Palliative Care Utilization and Hospital Transfers in Veterans Treated in Telecritical Care-Supported Intensive Care Units Versus Non-Telecritical Care Intensive Care Units.

Background: Although telecritical care (TCC) implementation is associated with reduced mortality and interhospital transfer rates, its impact on goal-concordant care delivery in critical illness is unknown. We hypothesized that implementation of TCC across the Veterans' Health Administration system resulted in increased palliative care consultation and goals of care evaluation, yielding reduced transfer rates. Methods: We included veterans admitted to intensive care units between 2008 and 2022. We compared palliative care consultation and transfer rates before and after TCC implementation with rates in facilities that never implemented TCC. We used generalized linear mixed multivariable models to assess the associations between TCC initiation, palliative care consultation, and transfer and subsequently used mediation analysis to evaluate potential causality in this relationship. Results: Overall, 1,020,901 veterans met inclusion criteria. Demographic characteristics of patients were largely comparable across groups, although TCC facilities served more rural veterans. Palliative care consultation rates increased substantially in both ever-TCC and never-TCC hospitals during the study period (2.3%-4.3%, and 1.6%-4.7%, p < 0.01). Admissions post-TCC implementation were associated with an increased likelihood of palliative care consultation (odds ratio [OR] 1.08, 95% confidence interval [CI] 1.01-1.15). TCC implementation was also associated with a reduction in transfer rates (OR 0.90, 95% CI 0.84-0.95). Mediation analysis did not demonstrate a causal relationship between TCC implementation, palliative care consultation, and reductions in interhospital transfer rate. Conclusions: TCC is associated with increased palliative care engagement, while TCC and palliative care engagement are both independently related to reduced transfers.

Top Ten Tips Palliative Care Clinicians Should Know About Dignity-Conserving Practice.

The acknowledgment and promotion of dignity is commonly viewed as the cornerstone of person-centered care. Although the preservation of dignity is often highlighted as a key tenet of palliative care provision, the concept of dignity and its implications for practice remain nebulous to many clinicians. Dignity in care encompasses a series of theories describing different forms of dignity, the factors that impact them, and strategies to encourage dignity-conserving care. Different modalities and validated instruments of dignity in care have been shown to lessen existential distress at the end of life and promote patient-clinician understanding. It is essential that palliative care clinicians be aware of the impacts of dignity-related distress, how it manifests, and common solutions that can easily be adapted, applied, and integrated into practice settings. Dignity-based constructs can be learned as a component of postgraduate or continuing education. Implemented as a routine component of palliative care, they can provide a means of enhancing patient-clinician relationships, reducing bias, and reinforcing patient agency across the span of serious illness. Palliative care clinicians-often engaging patients, families, and communities in times of serious illness and end of life-wield significant influence on whether dignity is intentionally integrated into the experience of health care delivery. Thus, dignity can be a tangible, actionable, and measurable palliative care goal and outcome. This article, written by a team of palliative care specialists and dignity researchers, offers 10 tips to facilitate the implementation of dignity-centered care in serious illness.

Forecasting Caseload of Critically Ill Patients Who Are Alert and Without Delirium for at Least Two Consecutive Days for the Assessment of Their Psychological Distress.

INTRODUCTION: One-quarter of alert, non-delirious patients in critical care units report significant psychological distress. Treatment of this distress depends upon identifying these high-risk patients. Our aim was to characterize how many critical care patients remain alert and without delirium for at least two consecutive days and could thus predictably undergo evaluation for distress. METHODS: This retrospective cohort study used data from a large teaching hospital in the United States of America, from October 2014 to March 2022. Patients were included if they were admitted to one of three intensive care units, and for >48 hours all delirium and sedation screenings were negative (Riker sedation-agitation scale four, calm and cooperative, and no delirium based on all Confusion Assessment Method for the Intensive Care Unit scores negative and all Delirium Observation Screening Scale less than three). Means and standard deviations of means for counts and percentages are reported among the most recent six quarters. Means and standard deviations of means for lengths of stay were calculated among all N=30 quarters. The Clopper-Pearson method was used to calculate the lower 99% confidence limit for the percentages of patients who would have had at most one assessment of dignity-related distress before intensive care unit discharge or change in mental status. RESULTS: An average of 3.6 (standard deviation 0.2) new patients met the criteria daily. The percentages of all critical care patients (20%, standard deviation 2%) and hours (18%, standard deviation 2%) meeting criteria decreased slightly over the 7.5 years. Patients spent a mean of 3.8 (standard deviation 0.1) days awake in critical care before their condition or site changed. In the context of assessing distress and potentially treating it before the date of change of condition (e.g., transfer), 66% (6818/10314) of patients would have zero or one assessment, lower 99% confidence limit of 65%. CONCLUSIONS: Approximately one-fifth of critically ill patients are alert and without delirium and thus could be evaluated for distress during their intensive care unit stay, mostly during a single visit. These estimates can be used to guide workforce planning.

Logistic Regression and Machine Learning Models for Predicting Whether Intensive Care Patients Who Are Alert and Without Delirium Remain As Such for at Least Two More Days.

Background Some intensive care unit patients are alert and without delirium for at least two consecutive days. These patients, like other critically ill individuals, are at risk for dignity-related distress. An interval of at least two days would provide for a palliative care multidisciplinary team to be consulted in the late morning or afternoon of day one and visit the next day. An assessment would include the administration of the validated Patient Dignity Inventory in a reflective manner. To determine whether dignity-related distress can be identified and treated during patients' intensive care unit stay, we evaluated whether a substantive fraction of such patients (≥5%) have a substantial (>90%) probability of remaining alert and without delirium in the intensive care unit for at least four consecutive days. Methods The retrospective cohort study used data from one large teaching hospital in the United States of America, from 2012 to June 2022. The inclusion criteria were: a) adults, b) present in an intensive care unit at 12 PM one day and continually so for the next 48 hours, c) during those two days had every Riker sedation-agitation scale score "4, calm and cooperative," and d) during those two days had all Confusion Assessment Method for the Intensive Care Unit (CAM-ICU) scores negative (i.e., no delirium) and all Delirium Observation Screening Scale (DOS) scores less than three (i.e., no delirium). Results Among the 10,314 patients alert and without delirium in an intensive care unit over two-day periods that included three successive 12 PMs, 3,826 (37%) maintained this status for at least two successive 12 PMs. Six patient characteristics (e.g., hemodynamic infusion or ventilatory support) had value in predicting those 37% of patients. However, logistic regression and classification models each predicted a few (≈0.2%) patients with >90% probability of maintaining these criteria. Forecasts were inaccurate for nearly all patients remaining alert and without delirium in the intensive care unit (≈37%) because the models predicted no patient alert, without delirium, and in the intensive care unit for two days would remain so for at least four days. That ≈63% accuracy was improved upon by random forest machine learning, but only with ≈3% improvement. Conclusion Although many intensive care unit patients remain alert and without delirium for several consecutive days, each patient has a high daily probability of intensive care unit discharge or deterioration in medical condition. Therefore, the results of our prediction modeling show that care models for the assessment and treatment of patients with intensive care unit-associated dignity-related distress should not rely solely on the intensive care unit team but instead should be taken from the perspective of the entire hospitalization.

Lack of Useful Predictors of Dignity-Related Distress Among the Critically Ill as Assessed With the Patient Dignity Inventory.

BACKGROUND: Many intensive care unit patients are awake (ie, alert and engaging in conversation), actively experiencing many facets of their critical care. The Patient Dignity Inventory can be used to elicit sources of distress in these patients. We examined the administrative question as to which awake intensive care unit patients should be evaluated and potentially treated (eg, through palliative care consultation) for distress. Should the decision to screen for distress be based on patient demographics or treatment conditions? METHODS: This was a retrospective cohort study of 155 adult patients from 5 intensive care units of one hospital from 2019 to 2020. Each patient had ≥48 hours without delirium, dementia, or sedation. The Patient Dignity Inventory has 25 items to which patients responded on a 1 (not a problem) to 5 (an overwhelming problem) scale. Multiple complete, stepwise forward, and stepwise backward logistic regression models were created among patient and treatment variables for predicting thresholds of the mean among the 25 items. RESULTS: There were 50% (78/155; 95% confidence interval [CI], 42-58) of patients with significant dignity-related distress (mean score ≥1.60). There were 34% (52/155; CI, 26-42) of patients with severe dignity-related distress (mean score ≥1.92; previously associated with often feeling like wanting to die). Models including combinations of vasopressor medication (protective of distress), tracheostomy (greater risk of distress), and female gender (greater risk of distress) had some predictive value. However, all combinations of potential predictors had misclassification rates significantly >20%. CONCLUSIONS: Identification of subsets of patients with little potential benefit to screening for dignity-related distress would have a reduced workload of palliative care team members (eg, nurses or social workers). Our results show that this is impractical. Given that approximately one-third of critical care patients who are alert and without delirium demonstrate severe dignity-related distress, all such patients with prolonged intensive care unit length of stay should probably be evaluated for distress.

"It Took Away and Stripped a Part of Myself": Clinician Distress and Recommendations for Future Telepalliative Care Delivery in the Cancer Context.

BACKGROUND: The COVID-19 pandemic has led to the rapid expansion of telehealth service delivery. We explored the experiences of a multidisciplinary palliative care team delivering telepalliative care for oncology inpatients during a 10-weeks COVID-19 surge in New York City. METHODS/PARTICIPANTS: We conducted semi-structured qualitative interviews with a targeted sample, employing a phenomenological approach with applied thematic text analysis. An interdisciplinary coding team iteratively coded data using a mix of a priori and inductive codes. Team members first independently reviewed each category, then met to reach consensus on recurring themes. The sample (n = 11) included a chaplain (n = 1), social worker (n = 1), pharmacist (n = 1), physicians (n = 3), physician assistant (n = 1), and nurse practitioners (n = 4). RESULTS: Participants described multidimensional clinician distress as a primary experience in delivering telepalliative care during the COVD-19 surge, characterized by competing loyalties (e.g., institutional obligations, ethical obligations to patients, resentment and distrust of leadership) and feelings of disempowerment (e.g., guilt in providing subpar support, decisional regret, loss of identity as a provider). Participants provided explicit recommendations to improve telepalliative care delivery for acute oncology inpatients in the future. CONCLUSION: Palliative care clinicians experienced personal and professional distress providing inpatient telepalliative care during this COVID-19 surge. Clinician strain providing telehealth services must be explored further as the pandemic and utilization of telehealth evolves. Telepalliative care planning must include attention to clinician wellbeing to sustain the workforce and promote team cohesion, and a focus on infrastructure needed to deliver high-quality, holistic care for oncology patients and their families when in-person consultation is impossible.

Escalation and Withdrawal of Treatment for Patients on Extracorporeal Membrane Oxygenation: A Qualitative Study.

OBJECTIVE: The aim of this study was to describe decisions about the escalation and withdrawal of treatment for patients on extracorporeal membrane oxygenation (ECMO). SUMMARY BACKGROUND DATA: Interventions premised on facilitating patient autonomy have proven problematic in guiding treatment decisions in intensive care units (ICUs). Calls have thus been made to better understand how decisions are made in critical care. ECMO is an important form of cardiac and respiratory support, but care on ECMO is characterized by prognostic uncertainty, varying time course, and high resource use. It remains unclear how decisions about treatment escalation and withdrawal should be made for patients on ECMO and what role families should play in these decisions. METHODS: We performed a focused ethnography in 2 cardiothoracic ICUs in 2 US academic hospitals. We conducted 380 hours of observation, 34 weekly interviews with families of 20 ECMO patients, and 13 interviews with unit clinicians from January to September 2018. Qualitative analysis used an iterative coding process. RESULTS: Following ECMO initiation, treatment was escalated as complications mounted until the patient either could be decannulated or interventional options were exhausted. Families were well-informed about treatment and prognosis but played minimal roles in shaping the trajectory of care. CONCLUSIONS: Discussion between clinicians and families about prognosis and goals was frequent but did not occasion decision-making moments. This study helps explain why communication interventions intended to maintain patient autonomy through facilitating surrogate participation in decisions have had limited impact. A more comprehensive understanding of upstream factors that predispose courses of critical care is needed.

"Doing palliative care with my hands tied behind my back": telepalliative care delivery for oncology inpatients during a COVID-19 surge.

New York City was a "global COVID-19 hotspot" in spring 2020. Many health teams rapidly transitioned to telehealth platforms. Little is known about the experiences of inpatient palliative care services who delivered telehealth services during the pandemic. This study was aimed to explore the experiences of an interdisciplinary palliative care team in meeting the holistic needs of oncology inpatients via telehealth over a 10-week period during the first COVID-19 surge. A targeted sample of interdisciplinary palliative specialists at an urban comprehensive cancer center participated in in-depth interviews that explored participants' experiences delivering physical, psychosocial, and spiritual care via telehealth. An interdisciplinary coding team followed a rigorous thematic text analysis approach and met regularly to reach consensus on emerging themes. Eleven palliative specialists from six disciplines (chaplaincy, medicine, nursing, pharmacy, physician assistant, and social work) participated. Seventy-three percent reported not receiving telehealth training prior to COVID-19 and 64% were "not at all" or "somewhat comfortable" delivering telepalliative care. Several themes were identified, including the barriers related to telehealth, the impact of telehealth on the quality of relationships with patients, their families, and coworkers, and the changes in perceived self-efficacy of fulfilling job responsibilities. Telehealth use has increased significantly during COVID-19, requiring further evaluation of its utility. Participants reported both positive and negative inpatient telepalliative care experiences associated with various domains of professional functioning, such as communication, relationships with key stakeholders, and self-efficacy. Enhanced telehealth training and support must be improved to sustain the palliative workforce and promote high-quality patient and family care in the future.

In spring 2020, New York City was a COVID-19 global hotspot. The palliative care team at a major cancer center rapidly transitioned to a "virtual service" (i.e., telehealth) without any physical contact with oncology inpatients for a 10-week period. No infrastructure for inpatient telehealth had been established prior to the transition. We wanted to explore how effective the interdisciplinary palliative care team felt in meeting the psychosocial, spiritual, and physical needs of patients and their families via telehealth. The palliative care team consisted of advanced practice providers, physicians, a chaplain, pharmacist, and social worker. Through participant interviews, our research team identified common themes related to the barriers and facilitators of telehealth; various effects on the quality of relationships with patients, their families, and coworkers; and diverse experiences related to the team's perceived effectiveness in delivering telepalliative care. There are several implications to consider. Inpatient practice settings must design telehealth infrastructures to ensure both patient and provider protections when in-person care is not possible. Multilevel policies must direct investments in telehealth training for health professionals to support high-quality care during future public health crises. Research should be directed toward developing and measuring enhanced telehealth interventions to support effective and holistic virtual palliative care delivery for inpatient settings.

Effect of Insufficient Interaction on the Evaluation of Anesthesiologists' Quality of Clinical Supervision by Anesthesiology Residents and Fellows.

Introduction In this study, we tested whether raters' (residents and fellows) decisions to evaluate (or not) critical care anesthesiologists were significantly associated with clinical interactions documented from electronic health record progress notes and whether that influenced the reliability of supervision scores. We used the de Oliveira Filho clinical supervision scale for the evaluation of faculty anesthesiologists. Email requests were sent to raters who worked one hour or longer with the anesthesiologist the preceding day in an operating room. In contrast, potential raters were requested to evaluate all critical care anesthesiologists scheduled in intensive care units during the preceding week. Methods Over 7.6 years, raters (N=172) received a total of 7764 requests to evaluate 21 critical care anesthesiologists. Each rater received a median/mode of three evaluation requests, one per anesthesiologist on service that week. In this retrospective cohort study, we related responses (2970 selections of "insufficient interaction" to evaluate the faculty, and 3127 completed supervision scores) to progress notes (N=25,469) electronically co-signed by the rater and anesthesiologist combination during that week. Results Raters with few jointly signed notes were more likely to select insufficient interaction for evaluation (P < 0.0001): 62% when no joint notes versus 1% with at least 20 joint notes during the week. Still, rater-anesthesiologist combinations with no co-authored notes accounted not only for most (78%) of the evaluation requests but also most (56%) of the completed evaluations (both P < 0.0001). Among rater and anesthesiologist combinations with each anesthesiologist receiving evaluations from multiple (at least nine) raters and each rater evaluating multiple anesthesiologists, most (72%) rater-anesthesiologist combinations were among raters who had no co-authored notes with the anesthesiologist (P < 0.0001). Conclusions Regular use of the supervision scale should be practiced with raters who were selected not only from their scheduled clinical site but also using electronic health record data verifying joint workload with the anesthesiologist.

Frequency of Follow-Up Assessment for Post-Intensive Care Syndrome Among Alert and Non-Delirious Critically Ill Patients.

INTRODUCTION: Many patients surviving critical illness develop post-intensive care syndrome, a constellation of psychological, physical, and cognitive symptoms which can have long-term consequences. Physicians and nurses at our large rural teaching hospital treat many of the critically ill patients in the state. Our focus has been the subset of these critically ill patients who were alert and not delirious for multiple consecutive days. The goal of our retrospective cohort study was to estimate the percentage of the patients with multiple intensive care unit days alert and not delirious who had follow-up assessments for post-intensive care syndrome within 15 months. METHODS: The inclusion criteria for the case series of randomly selected patients were: adults defined as patients aged >17 years on the date of hospital admission between October 2014 and December 2020, present in a critical care unit at noon one day and continually so for another 48 hours, and for that interval, ≥≥48 hours had every Riker sedation-agitation scale "4, calm and cooperative," as well as either all Confusion Assessment Method for the Intensive Care Unit scores negative (i.e., no delirium) or Delirium Observation Screening Scale <3 (i.e., no delirium). Each patient was then categorized as having a full one-year follow-up if there was an encounter at our hospital between 12 and 15 months after the last date meeting study inclusion criteria. All follow-up appointments completed within 15 months of the index intensive care unit stay were screened for systematic assessment for psychological and cognitive sequelae of critical illness. RESULTS: From a manual chart review of 366 records, 73 patients were found with follow-up ≥≥12 months. There were 21% (15/73) of the patients assessed for post-intensive care syndrome sequelae (99% confidence interval 10%-35%). CONCLUSIONS: The fact that far fewer than half the patients had documented assessments suggests that retrospective studies should not be used to judge the incidence of post-intensive care syndrome at our hospital. Prospective observational studies would be needed to judge outcomes among critically ill patients with multiple consecutive days of alert and without delirium.

The Patient Dignity Inventory and Dignity-Related Distress among the Critically Ill.

CONTEXT: Critical illness confers a significant risk of psychological distress, both during and after intensive care unit (ICU) admission. The Patient Dignity Inventory is a 25-item instrument initially designed to measure psychosocial, existential and symptom-related distress in terminally ill patients. OBJECTIVES: This study was conducted to validate the inventory as a means of identifying distress in inpatient critical care settings. METHODS: Single-center prospective cohort study of adult patients admitted to one of five ICUs within the University of Pennsylvania Health System for greater than 48 hours from January 2019 to February 2020. Patients completed the inventory in addition to the Patient Health Questionnaire-9 and the Generalized Anxiety Disorder-seven questionnaires. RESULTS: The tool's internal structure was assessed via principal components analysis. 155 participants consented, completed the surveys and were included for analysis. Scores on the inventory showed evidence of internal consistency when used in critical care settings (Cronbach's α=0.95). Moreover, principal components analysis elucidated four themes prevalent in critically-ill patients: Illness-related Concerns, Interactions with Others, Peace of Mind and Dependency. Construct validity was assessed through correlational analysis with depression and anxiety questionnaires. Scores on the inventory appear to be valid for assessing dignity-related psychological concerns in the critical care setting although there is overlap among components and with anxiety and depression scores. CONCLUSIONS: This study demonstrates that the inventory can be used to assess patient distress in critical care settings. Further research may elucidate the role of dignity-based interventions in treating and preventing post-intensive care psychological symptoms.

"I'd Have to Basically Be on My Deathbed": Heart Failure Patients' Perceptions of and Preferences for Palliative Care.

Objectives: To identify patient perceptions of how and when palliative care (PC) could complement usual heart failure (HF) management. Background: Despite guidelines calling for the integration of PC into the management of HF, PC services remain underutilized by this population. Patient preferences regarding delivery of and triggers for PC are unknown. Setting/subjects: Individuals with New York Heart Association Class II-IV disease were recruited from inpatient and outpatient settings at an academic quaternary care hospital. Measurements: Participants completed semistructured interviews discussing perceptions, knowledge, and preferences regarding PC. They also addressed barriers and facilitators to PC delivery. Two investigators independently analyzed data using template analysis. Results: We interviewed 27 adults with HF (mean age 63, 85% white, 63% male, 30% Class II, 48% Class III, and 22% Class IV). Participants frequently conflated PC with hospice; once corrected, they expressed variable preferences for primary versus specialist services. Proponents of primary PC cited continuity in care, HF-specific expertise, convenience, and cost, whereas advocates for specialist care highlighted expertise in symptom management and caregiver support, reduced time constraints, and a comprehensive approach to care. Triggers for specialist PC focused on late-stage manifestations of disease such as loss of independence and absence of disease-directed therapies. Conclusions: Patients with HF demonstrated variable conceptions of PC and its relevance to their disease management. Although preferences for delivery model were based on a variety of logistical and relational factors, triggers for initiation remained focused on late-stage disease, suggesting that patients with HF may misconceive PC is an option of last resort.

"Why Would I Choose Death?": A Qualitative Study of Patient Understanding of the Role and Limitations of Cardiac Devices.

BACKGROUND: Although cardiology organizations recommend early introduction of palliative care for patients with heart failure (HF), integration has remained challenging, particularly in patients with cardiac devices such as cardiac implantable electronic devices and left ventricular assist devices. Study authors suggest that patients often have limited and erroneous understanding of these devices and their implications for future care. OBJECTIVE: The aim of this study was to assess perceptions of cardiac devices in patients with HF and how these perceptions impacted advance care planning and future expectations. METHODS: This study used qualitative semistructured interviews with 18 community-dwelling patients with New York Heart Association stage II to IV HF. RESULTS: We interviewed 18 patients (mean ejection fraction, 38%; mean age, 64 years; 33% female; 83% white; 39% New York Heart Association class II, 39% class III, and 22% class IV). All had a cardiac implantable electronic device (6% permanent pacemaker, 56% implantable cardioverter-defibrillator, 28% biventricular implantable cardioverter-defibrillator); 11% had left ventricular assist devices. Patients with devices frequently misunderstood the impact of their device on cardiac function. A majority expressed the belief that the device would forestall further deterioration, regardless of whether this was the case. This anticipation of stability was often accompanied by the expectation that emerging technologies would continue to preempt decline. Citing this faith in technology, these patients frequently saw limited value in advance care planning. CONCLUSIONS: In our sample, patients with cardiac devices overestimated the impact of their devices on preventing disease progression and death and deprioritized advance care planning as a result.

Palliative Care for Patients With Advanced Heart Disease.

Over the past 2 decades, the discipline of palliative care has evolved and expanded such that it is now the standard of care for a variety of acute and chronic processes. Although there are recommendations encouraging incorporation of palliative care into the routine management of patients with chronic cardiac processes, such as congestive heart failure, implementation has been challenging, and nowhere more so than in the cardiac surgical population. However, as the boundaries of surgical care have expanded to include progressively more complex cases, increasing attention has been given to the integration of palliative care into their management. In this review article, the authors describe the existing evidence for palliative care team involvement in patients with non-operative and surgical cardiac diseases and examine future directions for growth in this field.