Defining the Time-limited Trial for Patients with Critical Illness: An Official American Thoracic Society Workshop Report.

In critical care, the specific, structured approach to patient care known as a "time-limited trial" has been promoted in the literature to help patients, surrogate decision makers, and clinicians navigate consequential decisions about life-sustaining therapy in the face of uncertainty. Despite promotion of the time-limited trial approach, a lack of consensus about its definition and essential elements prevents optimal clinical use and rigorous evaluation of its impact. The objectives of this American Thoracic Society Workshop Committee were to establish a consensus definition of a time-limited trial in critical care, identify the essential elements for conducting a time-limited trial, and prioritize directions for future work. We achieved these objectives through a structured search of the literature, a modified Delphi process with 100 interdisciplinary and interprofessional stakeholders, and iterative committee discussions. We conclude that a time-limited trial for patients with critical illness is a collaborative plan among clinicians and a patient and/or their surrogate decision makers to use life-sustaining therapy for a defined duration, after which the patient's response to therapy informs the decision to continue care directed toward recovery, transition to care focused exclusively on comfort, or extend the trial's duration. The plan's 16 essential elements follow four sequential phases: consider, plan, support, and reassess. We acknowledge considerable gaps in evidence about the impact of time-limited trials and highlight a concern that if inadequately implemented, time-limited trials may perpetuate unintended harm. Future work is needed to better implement this defined, specific approach to care in practice through a person-centered equity lens and to evaluate its impact on patients, surrogates, and clinicians.

Beyond translation: Transcreation of a clinicians' guide to structure discussions about health-related values with Latinx patients throughout cancer.

OBJECTIVE: This study aimed to ensure accurate translation and cultural appropriateness of a guide designed to help oncology clinicians provide person-centered care to Spanish-speaking Latinx patients with cancer. METHODS: Initial translation of a clinician-patient values discussion guide in open-ended question format ("Guide") was pretested in interviews with 27 Spanish-speaking individuals, followed by national expert panel review. At three sites, semi-structured, in-depth, audio-recorded interviews in the participant's preferred language (Spanish/English) were then conducted with Latinx patients receiving systemic treatment for a solid tumor malignancy and family joining them at clinic. RESULTS: Interviews of 43 patient/family participants representing diverse Latinx communities addressed the Guide's understandability, acceptability, relevance and responsiveness. Rapid analysis of interviews contributed to cultural adaptation/transcreation of the Guide for a pilot interventional trial. CONCLUSION: Moving beyond translation to transcreation can help promote inclusion, equity, and cultural sensitivity in oncologic care/communication. PRACTICE IMPLICATIONS: Clinicians now have a linguistically- and culturally-adapted guide including questions and prompts to help structure discussions in Spanish or English of health-related values with Latinx patients receiving oncologic care.

Patient and Clinician Stakeholder Perspectives on a Patient Portal Questionnaire Eliciting Illness and Treatment Understanding and Core Health-Related Values.

Introduction: Person-centered communication is foundational to cancer care. In pilot research, a questionnaire eliciting patients' illness and treatment understanding (ITU) and core health-related values (HRV) through the electronic patient portal demonstrated feasibility, acceptability, and efficacy. The aim of this study was to elicit stakeholder feedback to refine the design of the portal-based intervention, remain end-user centered, and optimize future system-wide integration. Methods: Between April and June 2023, we purposively sampled patients and clinicians from a previous pilot study to participate in a 20-30-minute semistructured interview about their opinions of and experiences with the portal questionnaire on ITU and HRV. An interdisciplinary coding team used a two-phase rapid analysis to identify themes, subthemes, and illustrative participant quotations. Results: Fourteen patients (mean age = 68 years) and 12 clinicians participated (total n = 26). Colorectal cancer was the commonest malignancy (64%) among patients. Clinicians were mostly physicians (50%), nurse practitioners (33%), and registered nurses (17%), with two-thirds having >15 years of experience in their specialty. Analysis generated four themes: (1) clinical utility of questionnaire, (2) barriers to questionnaire implementation, (3) considerations and strategies for modifying the questionnaire, and (4) considerations and strategies for questionnaire implementation. Themes captured key information about incorporating this questionnaire into clinical practice. Conclusion: Patients with cancer and their clinicians found a portal-based ITU and HRV questionnaire clinically useful to improve multiple aspects of person-centered communication. Participant recommendations about questionnaire timing and sharing of questionnaire responses with the clinical team will inform future questionnaire implementation and scaling in clinical settings.

Patient Portals to Elicit Essential Patient-Reported Elements of Communication Supporting Person-Centered Oncologic Care: A Pilot Study of the PERSON Approach.

PURPOSE: Patient portal technology offers important new opportunities to support person-centered clinician-patient communication. METHODS: Questionnaires relating to understanding of illness and treatment intent were sent quarterly via portal to all patients scheduled for follow-up in GI medical oncology clinics. For patients in selected clinics, items eliciting health-related values were added. Patient responses were available to all oncology team members in the electronic health record. Workflow and content of clinician-patient discussions about illness, treatment, and care goals stayed within clinicians' discretion. Feasibility (patient response rate), patient understanding, acceptability (three-item patient questionnaire), and efficacy (quality of clinician communication) were evaluated. RESULTS: From May 2021 through December 2022, a total of 12,233 questionnaires about illness/treatment understanding were sent to 6,325 patients (one to six per patient), with 97% response, including 9,358 with both open- and closed-ended responses. Fewer than 0.1% of patients indicated distress related to the questionnaire/process. Open-ended responses complemented closed-ended answers by revealing prognostic awareness and illness concerns. Of 48 patients approached to complete the full questionnaire including values items via portal, 15 first received and completed them in clinic (5 on iPad, 10 on paper), while 33 received and 27 (82%) completed the portal questionnaire. Patients found the portal process acceptable, and ratings of clinician communication were higher after clinic visits informed by patients' questionnaire responses (average prescore 6.8 v 5.9 post; P = .03). CONCLUSION: Almost all patients in this large GI cancer cohort responded via the portal about their understanding of illness and treatment goals. Eliciting their personal values by portal was also feasible, accepted by patients, and improved patient ratings of clinicians' communication. Portals represent a promising tool for scaling assessment of essential patient-reported elements of person-centered communication.

Exploring the Relationship Between Health-Illness Transition Experiences and Distress Among Patients With Pancreatic Cancer.

OBJECTIVES: To explore the correlation between health-illness transition (HIT) experiences and distress among patients with pancreatic cancer. SAMPLE & SETTING: 55 patients with a diagnosis of pancreatic cancer receiving chemotherapy at a tertiary cancer center in New York. METHODS & VARIABLES: A prospective correlational study was performed to explore the frequency, extent, and management of HITs. HITs were evaluated using the Measurement of Transitions in Cancer Scale, and distress was measured with the National Comprehensive Cancer Network Distress Thermometer. RESULTS: All patients experienced at least one HIT. The extent of HITs decreased over time. Patients reported that they managed HITs moderately well. There was a significant correlation between unmanaged HITs and distress. As distress increased, the extent of the physical and emotional HITs increased and management worsened. IMPLICATIONS FOR NURSING: HITs are ubiquitous among patients diagnosed with pancreatic cancer. Associated distress inhibits management. Nurses are well suited to assess for potential HITs and to support self-management of HITs.

The Third Annual US Celebration of World Hospice and Palliative Care Day: A virtual coming together to unify the global palliative care community.

OBJECTIVES: On 3-4 October 2022, the Memorial Sloan Kettering Cancer Center Supportive Care Service and Department of Psychiatry and Behavioral Sciences hosted the Third Annual United States (US) Celebration of World Hospice and Palliative Care Day (WHPCD). The purpose of this article is to reflect on the event within the broader context of the international WHPCD theme: "healing hearts and communities." We describe lessons learned in anticipation of the fourth annual conference to be held on 3-4 October 2023. METHODS: Description of the third annual event, conference planning team reflection, and attendee evaluation responses. RESULTS: The Worldwide Hospice Palliative Care Alliance launched WHPCD in 2005 as an annual unified day of action to celebrate and support hospice and palliative care globally. Since 2020, the conference has attracted an increasing number of attendees from around the world. Two primary aims continue to guide the event: community building and wisdom sharing. Fifty-two interprofessional palliative care experts, advocates, patients, and caregivers provided 13 unique interactive sessions. Four hundred and fifty-eight multidisciplinary registrants from at least 17 countries joined the program. Free registration for colleagues in low- and middle-income countries, students and trainees, and individuals experiencing financial hardship remains a cornerstone of inclusion and equitable access to the event. SIGNIFICANCE OF RESULTS: The US WHPCD celebration provides a virtual platform that offers opportunities for scientific dissemination and collective reflection on hospice and palliative care delivery amid significant local and global changes in clinical practice, research, policy and advocacy, and population health. We remain committed to ensuring an internationally relevant, culturally diverse, and multidisciplinary agenda that will continue to draw increased participation worldwide during future annual events.

Accuracy of curability expectations in patients with gastrointestinal cancers.

BACKGROUND: Assessment of illness and treatment understanding among cancer patients has largely focused on those with advanced disease. Less is known about patient expectations at earlier stages of cancer and potential modifiers of accurate understanding. METHODS: We assessed accuracy of cure expectations in patients across all stages with gastrointestinal (GI) cancers. Accuracy was determined by independent reviews of patient health records by oncologists on the investigative team. Impact on cure accuracy of selected clinical variables and health-information preferences was analyzed. RESULTS: Hundred and thirty five patients were included for analysis, with 100% interrater agreement for accuracy between oncologist reviewers. Sixety five patients (48%) had accurate cure expectations from their cancer treatment. Accuracy was lower in Stage IV versus Stage I-III disease (35% vs. 63%, p < 0.01), lower in unresectable versus resectable disease (35% vs. 67%, p < 0.01), and higher in patients with early-stage disease who received adjuvant chemotherapy versus those who did not (78% vs. 53%, p = 0.04). Accuracy did not differ by health-information preferences and remained stable over time. Of 63 patients who died, baseline accuracy differed by location of death (p = 0.03), with greater accuracy in those who died with home hospice (56%). Accuracy was lower in those who were hospitalized in the last 30 days of life versus those who were not (25% vs. 59%, p = 0.01). CONCLUSIONS: Inaccurate cure expectations are prevalent across all stages of GI cancers, but particularly among those with metastatic or unresectable disease. High-quality, iterative communication strategies may facilitate patient illness and treatment understanding throughout the disease course.

The Acknowledge-Normalize-Partner (ANP) Framework: A novel empathic communication tool for oncology nurses.

OBJECTIVE: To describe the development and implementation of a novel tool designed to enhance nurse-patient communication in a major academic cancer center, which nurses can learn quickly, incorporate into their primary palliative care practice, and broadly disseminate in order to improve the patient experience. METHOD: An evidence-based empathic communication tool and educational program were designed to provide essential skills to oncology nurses in having discussions with patients about their personal values. Evaluation included nurse focus groups, pre- and post-course evaluations and interviews, and patient questionnaires. RESULTS: Nurses were satisfied with the educational program and found the communication tool effective in a variety of clinical situations including discussions about personal values. Patients reported increased occurrences of these discussions when nurses utilized the framework (97% vs. 58%, p < 0.0001) and a higher quality of clinician communication (mean [SD] from 0 = very worst to 10 = very best: 7.18 [2.3] vs. 5.04 [2.9], p = 0.001). SIGNIFICANCE OF RESULTS: Skilled, empathic communication is an essential component of high-quality primary palliative care. Oncology nurses are well suited to lead communication and provide this care as part of an interprofessional team. The training and tool described here are targeted and efficient, and prepare nurses to respond skillfully to emotion while facilitating important discussions about patient values.

Palliative Care Early in the Care Continuum among Patients with Serious Respiratory Illness: An Official ATS/AAHPM/HPNA/SWHPN Policy Statement.

Background: Patients with serious respiratory illness and their caregivers suffer considerable burdens, and palliative care is a fundamental right for anyone who needs it. However, the overwhelming majority of patients do not receive timely palliative care before the end of life, despite robust evidence for improved outcomes. Goals: This policy statement by the American Thoracic Society (ATS) and partnering societies advocates for improved integration of high-quality palliative care early in the care continuum for patients with serious respiratory illness and their caregivers and provides clinicians and policymakers with a framework to accomplish this. Methods: An international and interprofessional expert committee, including patients and caregivers, achieved consensus across a diverse working group representing pulmonary-critical care, palliative care, bioethics, health law and policy, geriatrics, nursing, physiotherapy, social work, pharmacy, patient advocacy, psychology, and sociology. Results: The committee developed fundamental values, principles, and policy recommendations for integrating palliative care in serious respiratory illness care across seven domains: 1) delivery models, 2) comprehensive symptom assessment and management, 3) advance care planning and goals of care discussions, 4) caregiver support, 5) health disparities, 6) mass casualty events and emergency preparedness, and 7) research priorities. The recommendations encourage timely integration of palliative care, promote innovative primary and secondary or specialist palliative care delivery models, and advocate for research and policy initiatives to improve the availability and quality of palliative care for patients and their caregivers. Conclusions: This multisociety policy statement establishes a framework for early palliative care in serious respiratory illness and provides guidance for pulmonary-critical care clinicians and policymakers for its proactive integration.

Goals of care documentation by medical oncologists and oncology patient end-of-life care outcomes.

BACKGROUND: Goals of care (GOC) documentation is important but underused. We aimed to improve oncologist GOC documentation and end-of-life (EOL) care. METHODS: In April 2020, our cancer center launched a GOC note template, including optional fields for documenting discussion with the patient about: cancer natural history, goals, and/or EOL (resuscitation preferences, hospice receptivity). Associations between GOC notes and EOL care were evaluated. RESULTS: Among 1721 patients dying between June 1, 2020 and June 30, 2021, median days from first GOC note (± with documentation of EOL discussion) to death was 92, whereas a GOC note including EOL discussion ("GOC EOL note"), specifically, was 31. Patients with a first GOC note >60 days before death spent fewer days inpatient (6.7 vs 10.6 days, p < .001). Among patients with GOC EOL notes, those with such documentation >30 days before death had fewer inpatient (5 vs 11, p < .001) and intensive care unit days (0.5 vs 1.5, p < .001), more hospice referrals (57% vs 44%, p = .003), and less chemotherapy ≤14 days before death (6% vs 11%, p = .010). Of 925 admissions of patients dying within ≤30 days, those with GOC EOL notes were shorter (7 vs 9 days, p = .013) but not associated with more hospice discharge (30% vs 25%, p = .163). Oncologist (vs nononcologist) GOC documentation and earlier documentation of EOL discussion were associated in subset analyses with less inpatient care and more hospice referrals. CONCLUSIONS: Documentation of GOC, including EOL discussions, is associated with favorable performance on accepted indicators of quality EOL care.

Beyond 9 to 5: Expansion of an Inpatient Specialist Palliative Care Service to 24/7 Onsite Presence.

For seriously ill hospitalized patients with a diagnosis of cancer, there exists a need for specialist palliative care, 24 hours a day, 7 days a week. This article describes the expansion of a palliative care consult service in a metropolitan, dedicated cancer hospital to provide 24/7 specialist palliative care including onsite overnight presence by advanced practice registered nurses and to evaluate the impact of this change on nighttime utilization of the consult service. Inpatient management encounters and outpatient calls were compared before and after the expansion. The onsite availability of a palliative care specialist between midnight and 8 am increased from less than 10% of the time in 2019 to 100% of the time in 2021. The number of inpatient overnight calls and pages increased from a median of 4 to 16, and the number of follow-up visits evaluated increased from a median of 0 to 6. However, the number of overnight palliative care consults and outpatient calls evaluated did not change significantly. Expansion of a hospital-based palliative care service to include 24/7 onsite overnight presence increased patient, family, and night staff access to high-quality palliative care, prompt symptom management, and staff coaching on primary palliative care skills.

Posttraumatic Stress Disorder Symptom Clusters in Surrogate Decision Makers of Patients Experiencing Chronic Critical Illness.

Symptoms of posttraumatic stress disorder (PTSD) are common among surrogate decision makers of patients with chronic critical illness (CCI). PTSD symptoms can be categorized into clusters including intrusion, avoidance, and hyperarousal, each of which has been associated with distinct outcomes and treatment responses. Our objective was to determine which symptom cluster was predominant among surrogates of patients with CCI. DESIGN: Secondary analysis of data from a clinical trial of a communication intervention. SETTING: The original trial was conducted in medical intensive care units at three tertiary-care centers and one community hospital. PATIENTS: Patients with CCI (≥7 d of mechanical ventilation and not expected to die or to be weaned from the ventilator in the subsequent 72 hr) and their surrogates. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Surrogate PTSD symptoms were measured 90 days after onset of patient CCI using the Impact of Events Scale-Revised (IES-R). The IES-R includes a total score (range, 0-88, higher scores indicate severe symptoms) as well as three subscales that assess intrusion, avoidance, and hyperarousal (range of intrusion and avoidance scores 0-32 and range of hyperarousal score 0-24). Intrusion symptoms were most severe (mean score, 10.3; 95% CI, 9.3-11.2), followed by avoidance (mean score, 8.0; 95% CI, 7.2-8.8). Hyperarousal symptoms were lowest (mean score, 5.1; 95% CI, 4.5-5.7). In a multivariable linear regression model, we found that surrogates of patients who died had higher odds of intrusion (ß, 5.52; p < 0.0001) and avoidance (ß, 3.29; p = 0.001) symptoms than surrogates of patients who lived, even after adjusting for baseline symptoms of anxiety and depression. Patient death was not associated with hyperarousal symptoms. CONCLUSIONS: Intrusive thoughts are the most severe PTSD symptom in surrogates of patients experiencing CCI, with intensified symptoms among surrogates of patients who died. These results have the potential to inform tailored treatment strategies to reduce PTSD symptoms in this population.

The 2nd Annual US Celebration of World Hospice and Palliative Care Day: A virtual coming together to support equity in palliative care access.

OBJECTIVE: On October 5-6, 2021, the Memorial Sloan Kettering Cancer Center Supportive Care Service and Department of Psychiatry and Behavioral Sciences hosted the 2nd Annual United States (US) Celebration of World Hospice and Palliative Care Day (WHPCD). The purpose of this article is to describe the event within the broader context of the international WHPCD theme: "Leave No One Behind - Equity in Access to Palliative Care." We reflect on lessons learned in anticipation of the 3rd annual conference to be held October 3-4, 2022. METHODS: Description of the 2nd annual event, conference planning team reflection, and attendee evaluation responses. RESULTS: The Worldwide Hospice Palliative Care Alliance launched WHPCD in 2005 as an annual unified day of action to celebrate and support hospice and palliative care around the world. The 2021 US-based innovative virtual conference featured 37 interprofessional hospice and palliative care specialists and patient and family caregiver speakers across 11 diverse sessions with a focus on health equity and COVID-19 considerations. Two primary aims continue to guide the event: community building and wisdom sharing at the intersection of art and science. 278 registrants from at least 14 countries and 21 different states across the US joined the program, which served as a global debriefing for hospice and palliative care workers from diverse settings, contexts, and disciplines. SIGNIFICANCE OF RESULTS: The US WHPCD Celebration creates a virtual coming together for collective reflection on hospice and palliative care delivery amid vast changes in clinical practice, research, and policy, both locally and globally. In addition, our goal to ensure an internationally relevant, culturally inclusive, and multidisciplinary agenda will continue to draw increased participation worldwide during future annual events.

Navigating a newly diagnosed cancer through clinician-facilitated discussions of health-related patient values: a qualitative analysis.

BACKGROUND: Advance care planning, the process through which patient values and goals are explored and documented, is a core quality indicator in cancer care. However, patient values are predominantly elicited at the end of life; patient values earlier in serious illness are not clearly delineated. The objective of this analysis is to assess the content of patient-verified summaries of health-related values among newly diagnosed cancer outpatients in order to develop a theoretical framework to guide future values discussions and optimize person-centered oncologic care. METHODS: Values summaries among patients with gastrointestinal (GI) cancers or myelodysplastic syndrome (MDS) were extracted from the medical record. Modified grounded theory analysis included interdisciplinary team coding of values summaries to identify key domains; code categorization; and identification of thematic constructs during successive consensus meetings. A final round of coding stratified themes by disease type. RESULTS: Analysis of 128 patient values summary documents from 67 patients (gastrointestinal [GI] cancers, n = 49; myelodysplastic syndrome [MDS], n = 18) generated 115 codes across 12 categories. Resultant themes demonstrated patients' focus on retaining agency, personhood and interpersonal connection amidst practical and existential disruption caused by cancer. Themes coalesced into a theoretical framework with 5 sequenced constructs beginning with the cancer diagnosis, leading to 3 nesting constructs of individual identity (character), interpersonal (communication) preferences and needs, and social identity (connection), signifying sources of meaning and fulfillment. Values differences between GI cancer and MDS patients-including greater focus on normalcy, prognosis, and maintaining professional life among GI patients-reflected the distinct therapeutic options and prognoses across these disease groups. CONCLUSIONS: Patient values reflect goals of meaning-making and fulfillment through individual agency and interpersonal supports in the setting of a newly diagnosed cancer. Early, nurse-led values discussions provide important and patient-specific data that are informative and likely actionable by clinicians in the delivery of person-centered care. Values can also facilitate discussions between patients and families and clarify patient preferences.

Recognizing spiritual injury in cancer: A case study.

BACKGROUND: Spiritual distress is a common symptom among patients with cancer. Spiritual injury (SI), a type of spiritual distress, occurs when there is a breakdown in the relationship between the individual and their higher power. Patients who experience spiritual injury may have poor health outcomes. METHODS: A case report of a woman with stage IV non-small cell lung cancer who had experienced a SI. RESULTS: The palliative care team, in collaboration with the palliative care chaplain, was able to recognize that the patient had experienced a SI. They were able to help the patient to process and reflect upon this experience and ultimately treat her suffering. SIGNIFICANCE OF RESULTS: All palliative care providers should assess their patients' spiritual health and monitor for the existence of SI.

Top Ten Tips Palliative Care Clinicians Should Know About Caring for Patients with Cutaneous T Cell Lymphoma.

Cutaneous T cell lymphoma and its subtypes, mycosis fungoides (MF) and Sézary syndrome (SS), comprise a spectrum of chronic lymphoproliferative disorders in which neoplastic T cells accumulate within the skin and visceral organs. This process is frequently characterized by severe pain, nonpain symptoms, and physical disfigurement. Significant emotional, spiritual, and existential distress is also felt by many of these patients as they experience a chronic, often incurable disease. Patients suffering from these diseases, though not commonly encountered, can benefit greatly from palliative care support. In this article, a team of palliative care clinicians, critical care physicians, and an oncologist specializing in lymphoma offer 10 tips to help palliative care teams to support these vulnerable and often-distressed patients and their caregivers.

The Hardest Weeks of My Life: A Qualitative Study of Experiences, Practice Changes, and Emotional Burden of New York City Oncology Physicians During the COVID-19 Surge in 2020.

PURPOSE: The COVID-19 pandemic surge in New York City in Spring 2020 resulted in an unprecedented constraint on health care resources. This study aimed to explore the experiences of doctors providing care to oncology patients during this time. METHODS: Hospitalists and medical oncologists from two large inpatient services at a dedicated cancer center participated in virtual in-depth interviews exploring how the pandemic affected their practice and to what extent it may have affected decisions for urgent evaluation or hospital admission, interventions, or goals-of-care discussions. Interviews also explored how the pandemic affected each individual physician's psychologic well-being. Transcripts were analyzed by three independent coders in Atlas.ti v. 7.5, using a thematic analysis approach. RESULTS: Eighteen physicians were interviewed (n = 6 GI medical oncologists, n = 6 gynecologic medical oncologists, and n = 6 hospitalists). Analysis identified five major themes related to fear and distress: (1) perceived patient fears of the hospital during COVID-19, leading to avoidance and delay of acute care needs before admission, (2) physicians' fear and distress delivering oncology care during COVID-19, (3) physician distress resulting from ambiguity in decision making, (4) distress and anxiety balancing the need for patient contact with the need to minimize infection risk, and (5) distress regarding impact of uncertainty and acuity of COVID-19 on goals-of-care discussions. CONCLUSION: Insight into the experiences of physicians providing cancer care during a COVID-19 surge underscores the need for strategies mitigate short-term distress and long-term psychologic impacts. Findings can also inform practitioner training and preparedness for future pandemics in the oncology setting.

Palliative Medicine in Myelodysplastic Syndromes: Patients and Caregivers - A Qualitative Study.

OBJECTIVES: Evidence-based guidelines call for integration of palliative care within oncology from diagnosis. Misperceptions about palliative care have impeded implementation. Prior research has not examined perceptions about 'palliative care' versus 'supportive care' among patients and caregivers to whom this care is introduced routinely as part of comprehensive cancer care. We conducted a qualitative study of patients with myelodysplastic syndromes (MDS) and their informal caregivers to elicit perceptions of 'palliative care' and 'supportive care' before and after they received integrated primary/specialist palliative care from diagnosis. METHODS: Patients with newly diagnosed MDS and caregivers were interviewed about their understanding of 'palliative care' and 'supportive care' at diagnosis and follow-up. Interviews were audio-recorded, transcribed, and analysed by an interdisciplinary team. RESULTS: Forty-eight interviews were conducted in total, including with 21 patients and 13 caregivers at diagnosis, and 10 patients and 4 caregivers at follow-up. Initially, 28/34 participants (82%) associated 'palliative care' with death or fear/alarm. At follow-up, 11/14 participants (79%) recognised that 'palliative care' is not only for terminally ill patients, yet 13/14 participants (93%) still felt apprehensive about the term. Initially, 24/34 participants (71%) felt 'supportive care' sounded 'positive' and 12/14 participants (86%) reported this at follow-up. No participant associated 'supportive care' with death or fear/alarm at either time point. Among participants who had a preference, 'supportive care' was the preferred term initially and at follow-up. CONCLUSIONS: Patients with MDS and caregivers receiving integrated primary/specialist palliative care from diagnosis responded more favourably to and felt less apprehensive about 'supportive care', initially and at follow-up.

The Association between Patient Health Status and Surrogate Decision Maker Post-Traumatic Stress Disorder Symptoms in Chronic Critical Illness.

Rationale: Surrogate decision-makers of patients with chronic critical illness (CCI) are at high risk for symptoms of post-traumatic stress disorder (PTSD). Whether patient health status after hospital discharge is a risk factor for surrogate PTSD symptoms is not known. Objectives: To determine the association between patient health status 90 days after the onset of CCI and surrogate symptoms of PTSD. Methods: We performed a secondary analysis of the data from a multicenter randomized trial of a communication intervention for adult patients with CCI and their surrogate decision-makers. Results: Surrogate PTSD symptoms were measured at 90 days using the Impact of Events Scale-Revised. For patients who were alive at 90 days, location was used as a marker of health status and included the following categories: 1) home (relatively good health and low acuity), 2) acute rehabilitation (moderate care needs and impairments, generally expected to improve), 3) skilled nursing facility (moderate care needs and impairments, generally not expected to improve significantly or quickly), 4) long-term acute care facility (persistently high acute care needs and functional impairment), and 5) readmission to an acute care hospital (suggesting the highest acuity of illness and care needs of the cohort). Patients who died before 90 days were categorized as deceased. In the analyses, 365 surrogates and 256 patients were included. Among patients, 49% were female, and the mean age was 59 years. Among surrogates, 71% were female, and the mean age was 51 years. A directed acyclic graph was constructed to identify covariates to be included in the model. Compared with symptoms seen among surrogates of patients living at home, heightened PTSD symptoms were seen among surrogates of patients who were readmitted to an acute care hospital (ß coefficient, 15.9; 95% confidence interval [CI], 4.5 to 27.3) or had died (ß coefficient, 14.8; 95% CI, 8.8 to 20.9) at 90 days. Conclusions: Surrogates of patients with CCI who have died or have been readmitted to an acute care hospital at 90 days experience increased PTSD symptoms as compared with surrogates of patients who are living at home. These patients and surrogates represent a readily identifiable group who may benefit from enhanced emotional support.