"Like not having an arm": a qualitative study of the impact of visitor restrictions on cancer care during the COVID-19 pandemic.

PURPOSE: Visitor restriction policies to prevent the spread of COVID-19 among patients and clinicians were widespread during the pandemic, resulting in the exclusion of caregivers at key points of cancer care and treatment decision-making. The aim of this study was to explore how visitor restrictions impacted cancer treatment decision-making and care from patient and physician perspectives. METHODS: Sixty-seven interviews, including 48 cancer patients and 19 cancer and palliative care physicians from four academic cancer centers in the USA between August 2020 and July 2021. RESULTS: Visitor restrictions that prevented caregivers from participating in clinic appointments and perioperative hospital care created challenges in cancer care that spanned three domains: practical, social, and informational. We identified eight themes that characterized challenges within the three domains across all three groups, and that these challenges had negative emotional and psychological consequences for both groups. Physicians perceived that patients' negative experiences due to lack of support through the physical presence of caregivers may have worsened patient outcomes. CONCLUSIONS: Our data demonstrate the tripartite structure of the therapeutic relationship in cancer care with caregivers providing critical support in the decision-making and care process to both patients and physicians. Caregiver absences led to practical, psychosocial, and informational burdens on both groups, and likely increased the risk of burnout among physicians. Our findings suggest that the quality of cancer care can be enhanced by engaging caregivers and promoting their physical presence during clinical encounters.

The Reviewer Academy of the Society of Critical Care Medicine: Key Principles and Strategic Plan.

The Society of Critical Care Medicine (SCCM) Reviewer Academy seeks to train and establish a community of trusted, reliable, and skilled peer reviewers with diverse backgrounds and interests to promote high-quality reviews for each of the SCCM journals. Goals of the Academy include building accessible resources to highlight qualities of excellent manuscript reviews; educating and mentoring a diverse group of healthcare professionals; and establishing and upholding standards for insightful and informative reviews. This manuscript will map the mission of the Reviewer Academy with a succinct summary of the importance of peer review, process of reviewing a manuscript, and the expected ethical standards of reviewers. We will equip readers to target concise, thoughtful feedback as peer reviewers, advance their understanding of the editorial process and inspire readers to integrate medical journalism into diverse professional careers.

Church leaders and parishioners speak out about the role of the church in advance care planning and end-of-life care.

OBJECTIVE: Despite the increased focus on improving advance care planning (ACP) in African Americans through community partnerships, little published research focused on the role of the African American church in this effort. This study examines parishioner perceptions and beliefs about the role of the church in ACP and end-of-life care (EOLC). METHOD: Qualitative interviews were completed with 25 church members (parishioners n = 15, church leader n = 10). The coding of data entailed a direct content analysis approach incorporating team experts for final themes. RESULTS: Seven themes emerged: (1) church role on end-of-life, (2) advocacy for health and well-being, (3) health literacy in EOLC, (4) lay health training on ACP and EOLC, (5) church recognized as a trusted source, (6) use of church ministries to sustain programs related to ACP and EOLC, and (7) community resources for EOLC needs. SIGNIFICANCE OF RESULTS: The church has a central role in the African American Community. These findings suggest that involving African American churches in ACP and EOLC training can have a positive effect on facilitating planning and care during illness, dying, and death for their congregants.

A review of paper-based advance care planning aids.

BACKGROUND: Advance care planning (ACP) aids can help prepare patients, family members, and physicians for in-the-moment medical decision-making. We wished to describe the content and approach of paper-based ACP aids in order to characterize existing aids and inform the development of a new ACP aid. METHODS: Paper-based ACP aids were identified through an environmental scan and screened for eligibility. ACP conceptual frameworks and data were gathered via stakeholder engagement and used to inform the coding framework that two investigators used to independently code each aid. A directed content analysis was conducted on these eligible aids. Aids were categorized through a deliberative process with an investigator abstracting general information for each aid. RESULTS: Fifteen aids met the eligibility criteria. They ranged in length from 6 to 78 pages with the average aid written at an eighth-grade reading level. The content analysis revealed that many aids encouraged choosing a surrogate decision maker and informed users about legal medical documents. Fewer than half of the aids facilitated patient clarification of values regarding quality of life issues. The authors identified and termed the following three categories of aids: informative; semi-action oriented; and action-oriented. It was often unclear whether patients contributed to the development or testing of the ACP aids reviewed. CONCLUSIONS: Most existing paper-based ACP aids address legal matters such as completing an advance directive. Only a minority elicited patient values and it was unclear whether any were developed in partnership with patients. Future development of ACP aids should account for patient preferences with a goal of supporting in-the-moment medical decision-making.

Implementing Evidence-Based Palliative Care Programs and Policy for Cancer Patients: Epidemiologic and Policy Implications of the 2016 American Society of Clinical Oncology Clinical Practice Guideline Update.

The American Society of Clinical Oncology (ASCO) recently convened an Ad Hoc Palliative Care Expert Panel to update a 2012 provisional clinical opinion by conducting a systematic review of clinical trials in palliative care in oncology. The key takeaways from the updated ASCO clinical practice guidelines (CPGs) are that more people should be referred to interdisciplinary palliative care teams and that more palliative care specialists and palliative care-trained oncologists are needed to meet this demand. The following summary statement is based on multiple randomized clinical trials: "Inpatients and outpatients with advanced cancer should receive dedicated palliative care services, early in the disease course, concurrent with active treatment. Referral of patients to interdisciplinary palliative care teams is optimal, and services may complement existing programs" (J Clin Oncol. 2017;35(1):96). This paper addresses potential epidemiologic and policy interpretations and implications of the ASCO CPGs. Our review of the CPGs demonstrates that to have clinicians implement these guidelines, there is a need for support from stakeholders across the health-care continuum, health system and institutional change, and changes in health-care financing. Because of rising costs and the need to improve value, the need for coordinated care, and change in end-of-life care patterns, many of these changes are already underway.

Guidelines for Family-Centered Care in the Neonatal, Pediatric, and Adult ICU.

OBJECTIVE: To provide clinicians with evidence-based strategies to optimize the support of the family of critically ill patients in the ICU. METHODS: We used the Council of Medical Specialty Societies principles for the development of clinical guidelines as the framework for guideline development. We assembled an international multidisciplinary team of 29 members with expertise in guideline development, evidence analysis, and family-centered care to revise the 2007 Clinical Practice Guidelines for support of the family in the patient-centered ICU. We conducted a scoping review of qualitative research that explored family-centered care in the ICU. Thematic analyses were conducted to support Population, Intervention, Comparison, Outcome question development. Patients and families validated the importance of interventions and outcomes. We then conducted a systematic review using the Grading of Recommendations, Assessment, Development and Evaluations methodology to make recommendations for practice. Recommendations were subjected to electronic voting with pre-established voting thresholds. No industry funding was associated with the guideline development. RESULTS: The scoping review yielded 683 qualitative studies; 228 were used for thematic analysis and Population, Intervention, Comparison, Outcome question development. The systematic review search yielded 4,158 reports after deduplication and 76 additional studies were added from alerts and hand searches; 238 studies met inclusion criteria. We made 23 recommendations from moderate, low, and very low level of evidence on the topics of: communication with family members, family presence, family support, consultations and ICU team members, and operational and environmental issues. We provide recommendations for future research and work-tools to support translation of the recommendations into practice. CONCLUSIONS: These guidelines identify the evidence base for best practices for family-centered care in the ICU. All recommendations were weak, highlighting the relative nascency of this field of research and the importance of future research to identify the most effective interventions to improve this important aspect of ICU care.

Systematic review of patient-reported outcome measures in clinical vestibular research.

OBJECTIVE: To identify the most commonly used patient-reported outcome (PRO) measures in clinical vestibular research, and to assess their test characteristics and applicability to the study of age-related vestibular loss in clinical trials. DATA SOURCES: We performed a systematic review of the PubMed, Cumulative Index to Nursing and Allied Health Literature, and PsycINFO databases from 1950 to August 13, 2013. STUDY SELECTION: PRO measures were defined as outcomes that capture the subjective experience of the patient (eg, symptoms, functional status, health perceptions, quality of life). Two independent reviewers selected studies that used PRO measures in clinical vestibular research. Disparities were resolved with consensus between the reviewers. Of 2260 articles initially found in the literature search, 255 full-text articles were retrieved for assessment. Of these, 104 met inclusion criteria for data collection. DATA EXTRACTION: PRO measures were identified by 2 independent reviewers. The 4 most commonly used PROs were evaluated for their applicability to the condition of age-related vestibular loss. Specifically, for these 4 PROs, data were collected pertaining to instrument test-retest reliability, item domains, and target population of the instrument. DATA SYNTHESIS: A total of 50 PRO instruments were identified. The 4 most frequently used PROs were the Dizziness Handicap Inventory, Activities-specific Balance Confidence scale, Vertigo Symptom Scale-short form, and visual analog scale. Of these 4 PROs, 3 were validated for use in patients with vestibular disease and 1 was validated in community-dwelling older individuals with balance impairments. Items across the 4 PROs were categorized into 3 domains based on the International Classification of Functioning, Disability and Health: activity, participation, and body functions and structures. CONCLUSIONS: None of the most commonly used PRO instruments were validated for use in community-dwelling older adults with age-related vestibular loss. Nevertheless, the 3 common domains of items identified across these 4 PRO instruments may be generalizable to older adults and provide a basis for developing a PRO instrument designed to evaluate the effectiveness of interventions targeted toward age-related vestibular loss.

The changing role of palliative care in the ICU.

OBJECTIVES: Palliative care is an interprofessional specialty as well as an approach to care by all clinicians caring for patients with serious and complex illness. Unlike hospice, palliative care is based not on prognosis but on need and is an essential component of comprehensive care for critically ill patients from the time of ICU admission. In this clinically focused article, we review evidence of opportunities to improve palliative care for critically ill adults, summarize strategies for ICU palliative care improvement, and identify resources to support implementation. DATA SOURCES: We searched the MEDLINE database from inception through January 2014. We also searched the Reference Library of The Improving Palliative Care in the ICU Project website sponsored by the National Institutes of Health and the Center to Advance Palliative Care, which is updated monthly. We hand-searched reference lists and author files. STUDY SELECTION: Selected studies included all English-language articles concerning adult patients using the search terms 'intensive care' or 'critical care' with 'palliative care,' 'supportive care,' 'end-of-life care,' or 'ethics.' DATA EXTRACTION: : After examination of peer-reviewed original scientific articles, consensus statements, guidelines, and reviews resulting from our literature search, we made final selections based on author consensus. DATA SYNTHESIS: Existing evidence is organized to address: 1) opportunities to alleviate physical and emotional symptoms, improve communication, and provide support for patients and families; 2) models and specific interventions for improving ICU palliative care; 3) available resources for ICU palliative care improvement; and 4) ongoing challenges and targets for future research. Key domains of ICU palliative care have been defined and operationalized as measures of quality. There is increasing recognition that effective integration of palliative care during acute and chronic critical illness may help patients and families face challenges after discharge from intensive care. CONCLUSIONS: Palliative care is increasingly accepted as an essential component of comprehensive care for critically ill patients, regardless of diagnosis or prognosis. A variety of strategies to improve ICU palliative care appear to be effective, and resources including technical assistance and tools are available to support improvement efforts. As the longer-term impact of intensive care on those surviving acute critical illness is increasingly documented, palliative care can help prepare and support patients and families for challenges after ICU discharge. Further research is needed to inform efforts to integrate palliative care with intensive care more effectively and efficiently in and after the ICU and to document improvement using valid and responsive outcome measures.

Creating an advance-care-planning decision aid for high-risk surgery: a qualitative study.

BACKGROUND: High-risk surgery patients may lose decision-making capacity as a result of surgical complications. Advance care planning prior to surgery may be beneficial, but remains controversial and is hindered by a lack of appropriate decision aids. This study sought to examine stakeholders' views on the appropriateness of using decision aids, in general, to support advance care planning among high-risk surgery populations and the design of such a decision aid. METHODS: Key informants were recruited through purposive and snowball sampling. Semi-structured interviews were conducted by phone until data collected reached theoretical saturation. Key informants were asked to discuss their thoughts about advance care planning and interventions to support advance care planning, particularly for this population. Researchers took de-identified notes that were analyzed for emerging concordant, discordant, and recurrent themes using interpretative phenomenological analysis. RESULTS: Key informants described the importance of initiating advance care planning preoperatively, despite potential challenges present in surgical settings. In general, decision aids were viewed as an appropriate approach to support advance care planning for this population. A recipe emerged from the data that outlines tools, ingredients, and tips for success that are needed to design an advance care planning decision aid for high-risk surgical settings. CONCLUSIONS: Stakeholders supported incorporating advance care planning in high-risk surgical settings and endorsed the appropriateness of using decision aids to do so. Findings will inform the next stages of developing the first advance care planning decision aid for high-risk surgery patients.

Patient Experiences of Specialty Palliative Care in the Perioperative Period for Cancer Surgery.

CONTEXT: Though patients undergoing treatment for upper gastrointestinal (GI) cancers frequently experience a range of sequelae and disease recurrence, patients often do not receive specialty palliative care soon after diagnosis and it is unknown in what ways they may benefit. OBJECTIVES: To understand patient experiences of specialty palliative care in the perioperative period for patients seeking curative intent upper GI oncologic surgery. METHODS: As part of a randomized controlled trial, we conducted in-depth interviews between November 2019 and July 2021 with 23 patients in the intervention arm who were undergoing curative intent treatment for upper GI cancers and who were also followed by the specialty palliative care team. RESULTS: We found five themes that characterized patient experiences and perceptions of specialty palliative care. Patients typically had limited prior awareness of palliative care (theme 1), but during the study, came to understand it as a "talking" intervention (theme 2). Patients whose concerns aligned with palliative care described it as being impactful on their care (theme 3). However, most patients expressed a focus on cure from their cancer and less perceived relevance for integration of palliative care (theme 4). Integrating specialist palliative care practitioners with surgical teams made it difficult for some patients to identify how palliative care practitioners differed from other members of their care team (theme 5). CONCLUSION: While receipt of specialty palliative care in the perioperative period was generally perceived positively and patients appreciated palliative care visits, they did not describe many needs typically met by palliative care practitioners. TRIAL REGISTRATION: clinicaltrials.gov registration: NCT03611309.

Top Ten Tips Palliative Care Clinicians Should Know Before Their Patient Undergoes Surgery?

Many seriously ill patients undergo surgical interventions. Palliative care clinicians may not be familiar with the nuances involved in perioperative care, however they can play a valuable role in enabling the delivery of patient-centered and goal-concordant perioperative care. The interval of time surrounding a surgical intervention is fraught with medical, psychosocial, and relational risks, many of which palliative care clinicians may be well-positioned to navigate. A perioperative palliative care consult may involve exploring gaps between clinician and patient expectations, facilitating continuity of symptom management or helping patients to designate a surrogate decision-maker before undergoing anesthesia. Palliative care clinicians may also be called upon to direct discussions around perioperative management of modified code status orders and to engage around the goal-concordance of proposed interventions. This article, written by a team of surgeons and anesthesiologists, many with subspecialty training in palliative medicine and/or ethics, offers ten tips to support palliative care clinicians and facilitate comprehensive discussion as they engage with patients and clinicians considering surgical interventions.

A systematic review of communication quality improvement interventions for patients with advanced and serious illness.

BACKGROUND: Effective communication is an interaction between two or more people that produces a desired effect and is a key element of quality of care for patients with advanced and serious illness and their family members. Suboptimal provider-patient/family communication is common, with negative effects on patient/family-centered outcomes. OBJECTIVES: To systematically review the evidence for effectiveness of communication-related quality improvement interventions for patients with advanced and serious illness and to explore the effectiveness of consultative and integrative interventions. DATA SOURCES: MEDLINE, CINAHL, PsycINFO, Cochrane, and DARE from 2000 through December 2011 and reference list of eligible articles and reviews. STUDY ELIGIBILITY CRITERIA, PARTICIPANTS AND INTERVENTIONS: Prospective, controlled quality improvement studies in populations with life-limiting or severe life-threatening illness with a primary intervention focus of improving communication with patients and/or families. STUDY APPRAISAL AND SYNTHESIS METHODS: Two investigators independently screened and abstracted data on patient/family-centered outcomes. RESULTS: We included 20 studies; 13 (65 %) were in intensive care. We found four intervention types: (1) family meetings with the usual team (11 studies, 77 % found improvement in healthcare utilization), (2) palliative care teams (5 studies, 50 % found improvement in healthcare utilization), (3) ethics consultation (2 studies, 100 % found improvement in healthcare utilization), and (4) physician-patient communication (2 studies, no significant improvement in healthcare utilization). Among studies addressing the outcomes of patient/family satisfaction, 22 % found improvement; among studies addressing healthcare utilization (e.g., length of stay), 73 % found improvement. Results suggest that consultative interventions, as opposed to integrative ones, may be more effective, but more research is needed. LIMITATIONS: Study heterogeneity did not allow quantitative synthesis. CONCLUSIONS AND IMPLICATIONS OF KEY FINDINGS: Communication in the care of patients with advanced and serious illness can be improved using quality improvement interventions, particularly for healthcare utilization as an outcome. Interventions may be more effective using a consultative approach.

Assessing the impact of palliative care in the intensive care unit through the lens of patient-centered outcomes research.

PURPOSE OF REVIEW: Professional organizations, consensus groups, and stakeholders are calling for better palliative care in acute care settings, particularly in ICUs. Our ability to deliver that care is dependent on the outcomes associated with palliative care in the ICU. This review provides a conceptual framework for these outcomes, discusses current and future challenges for work in this field, and advocates for better use of patient-centered outcomes in future studies. RECENT FINDINGS: Previous studies of palliative care interventions in the ICU have used heterogeneous outcomes, conceptualized as: systems-related, content-related, clinician-related, or patient/family-related. Few outcomes were used in multiple studies and many studies had insufficient power and questionable generalizability and impact. Although nearly all previous studies incorporated family-related outcomes, not one incorporated patient-centered outcomes, such as health-related quality of life, patient symptom score, or consensus between patient goals and care provided. SUMMARY: Delivery of palliative care in the ICU will be hampered until studies incorporate outcomes that are: responsive to and reflective of variations in care, and multi-faceted (with patient-centered components) to reflect the multi-dimensional nature of palliative care and the varied needs of different stakeholders.

Patient Characteristics Associated With Occurrence of Preoperative Goals-of-Care Conversations.

Importance: Communication about patients' goals and planned and potential treatment is central to advance care planning. Undertaking or confirming advance care plans is also essential to preoperative preparation, particularly among patients who are frail or will undergo high-risk surgery. Objective: To evaluate the association between patient risk of hospitalization or death and goals-of-care conversations documented with a completed Life-Sustaining Treatment (LST) Decisions Initiative note among veterans undergoing surgery. Design, Setting, and Participants: This retrospective cross-sectional study included 190 040 veterans who underwent operations between January 1, 2017, and February 28, 2020. Statistical analysis took place from November 1, 2021, to November 17, 2022. Exposure: Patient risk of hospitalization or death, evaluated with a Care Assessment Need (CAN) score (range, 0-99, with a higher score representing a greater risk of hospitalization or death), dichotomized as less than 80 or 80 or more. Main Outcomes and Measures: Preoperative LST note completion (30 days before or on the day of surgery) or no LST note completion within the 30-day preoperative period prior to or on the day of the index operation. Results: Of 190 040 veterans (90.8% men; mean [SD] age, 65.2 [11.9] years), 3.8% completed an LST note before surgery, and 96.2% did not complete an LST note. In the groups with and without LST note completion before surgery, most were aged between 65 and 84 years (62.1% vs 56.7%), male (94.3% vs 90.7%), and White (82.2% vs 78.3%). Compared with patients who completed an LST note before surgery, patients who did not complete an LST note before surgery tended to be female (9.3% vs 5.7%), Black (19.2% vs 15.7%), married (50.2% vs 46.5%), and in better health (Charlson Comorbidity Index score of 0, 25.9% vs 15.2%); to have a lower risk of hospitalization or death (CAN score <80, 98.3% vs 96.9%); or to undergo neurosurgical (9.8% vs 6.2%) or urologic surgical procedures (5.9% vs 2.0%). Over the 3-year interval, unadjusted rates of LST note completion before surgery increased from 0.1% to 9.6%. Covariate-adjusted estimates of LST note completion indicated that veterans at a relatively elevated risk of hospitalization or death (CAN score ≥80) had higher odds of completing an LST note before surgery (odds ratio [OR], 1.29; 95% CI, 1.09-1.53) compared with those with CAN scores less than 80. High-risk surgery was not associated with increased LST note completion before surgery (OR, 0.93; 95% CI, 0.86-1.01). Veterans who underwent cardiothoracic surgery had the highest likelihood of LST note completion before surgery (OR, 1.35; 95% CI, 1.24-1.47). Conclusions and Relevance: Despite increasing LST note implementation, a minority of veterans completed an LST note preoperatively. Although doing so was more common among veterans with an elevated risk compared with those at lower risk, improving proactive communication and documentation of goals, particularly among higher-risk veterans, is needed. Doing so may promote goal-concordant surgical care and outcomes.

Strategies to Improve Perioperative Palliative Care Integration for Seriously Ill Veterans.

CONTEXT: Seriously ill patients are at higher risk for adverse surgical outcomes. Palliative care (PC) interventions for seriously ill surgical patients are associated with improved quality of patient care and patient-centered outcomes, yet, they are underutilized perioperatively. OBJECTIVES: To identify strategies for improving perioperative PC integration for seriously ill Veterans from the perspectives of PC providers and surgeons. METHODS: We conducted semistructured, in-depth individual and group interviews with Veteran Health Administration PC team members and surgeons between July 2020 and April 2021. Participants were purposively sampled from high- and low-collaboration sites based on the proportion of received perioperative palliative consults. We performed a team-based thematic analysis with dual coding (inter-rater reliability above 0.8). RESULTS: Interviews with 20 interdisciplinary PC providers and 13 surgeons at geographically distributed Veteran Affairs sites converged on four strategies for improving palliative care integration and goals of care conversations in the perioperative period: 1) develop and maintain collaborative, trusting relationships between palliative care providers and surgeons; 2) establish risk assessment processes to identify patients who may benefit from a PC consult; 3) involve both PC providers and surgeons at the appropriate time in the perioperative workflow; 4) provide sufficient resources to allow for an interdisciplinary sharing of care. CONCLUSION: The study demonstrates that individual, programmatic, and organizational efforts could facilitate interservice collaboration between PC clinicians and surgeons.