Angelo E. Volandes

The COVID-19 pandemic has resulted in more than 800 000 deaths in the US, 77% of which were among people 65 years or older and 33% among African American and Hispanic individuals.¹ Many of these patients faced emergency decisions about the use of life-sustaining treatments, an eventuality for which they and their families were often unprepared.² Advance care planning (ACP) seeks to help patients receive care that reflects what matters most to them.³ This process anchors on educating patients about the medical care they may receive and elucidating their informed preferences through iterative conversations and discussions.^3,4 In addition, ACP often includes choosing and preparing another trusted person to make medical decisions in the event that an individual no longer can do so themselves.^3-5

Background Patients with end-stage liver disease (ESLD) experience frequent readmissions; however, studies focused on patients’ and caregivers’ perceptions of their transitional care experiences to identify root causes of burdensome transitions of care are lacking. Aim To explore the transitional care experiences of patients with ESLD and their caregivers in order to identify their supportive care needs. Methods We conducted interviews with 15 patients with ESLD and 14 informal caregivers. We used semi-structured interview guides to explore their experiences since the diagnosis of ESLD including their care transitions. Two raters coded interviews independently (κ = 0.95) using template analysis. Results Participants reported feeling unprepared to manage their informational, psychosocial, and practical care needs as they transitioned from hospital to home after the diagnosis of ESLD. Delay in the timely receipt of supportive care services addressing these care needs resulted in hospital readmissions, emotional distress, caregiver burnout, reduced work capacity, and financial hardship. Participants shared the following resources that they perceived would improve their quality of care: (1) discharge checklist, (2) online resources, (3) mental health support, (4) caregiver support and training, and (5) financial navigation. Conclusion Transitional care models that attend to the informational, psychosocial, and practical domains of care are needed to better support patients with ESLD and their caregivers at the time of diagnosis and beyond. Without attending to the multidimensional care needs of newly diagnosed patients with ESLD and their caregivers, they are at risk of burdensome transitions of care, high healthcare utilization, and poor health-related quality of life.

9 Background: We developed and validated the values questions for the Person-Centered Oncologic Care and Choices (P-COCC) ACP intervention, which combines an informational care goals video with a patient values interview. Herein, we studied (primarily) the acceptability of P-COCC, and (secondarily) its effects on wellbeing and decisional conflict. Methods: Patients (pts): English-speaking with GI cancer, ≤ monthly followup in MSK medical oncology clinics and believed by their oncologist able to complete study measures and survive 1-12 months. Consented pts randomized 2:2:1 to P-COCC vs. video alone (V) vs. usual care (UC). Questionnaires: administered baseline and at next follow-up visit on validated measures of wellbeing, and on follow-up only, decisional conflict. P-COCC arm pts also completed 3 Likert scales (was the intervention helpful, comfortable and recommended to others?); a positive score on ≥1 of 3 indicated acceptability for that pt. Results: During screening from 9/2014-11/2016, 202 pts were approached. 51 (25%) declined participation (most common reason, N = 31 = not wanting to discuss the topic). 151 consented and were randomized; 99 (66% of the 151) completed study measures (most common attrition reason, N = 34 = disease progression or death). Of the 99, 63% male; mean age 61 years; mean ECOG PS 1; most common cancers colorectal, gastroesophageal, and pancreatic. The primary aim was met: Among 33 pts, 32 (97%, 95%CI: 0.84-0.99, p < 0.001) rated P-COCC acceptable. Mean distress scores (0-10) increased (0.43) in the P-COCC arm but decreased in the V (-0.04) and UC (-0.21) arms (p = 0.03 and 0.04, P-COCC vs V and UC, respectively). There were no significant pre-post change scores on other measures of wellbeing (anxiety, depression, stress, acceptance, QOL), or intergroup differences in decisional conflict. Qualitatively, P-COCC interviews revealed pt concerns, and desires for support and QOL. Conclusions: Our values-based ACP paradigm is acceptable but may increase distress in GI cancer outpatients. Further studies are investigating underpinnings and follow-up duration of these results, and ways to best support cancer patients (with any cancers, and regardless of prognosis) in ACP. Clinical trial information: NCT01912131.

E21571 Background: We developed and validated the values questions for the Person-Centered Oncologic Care and Choices (P-COCC) ACP intervention, which combines an informational care goals video with a brief patient values interview. Herein, we studied (primarily) the acceptability of P-COCC, and (secondarily) its effects on wellbeing and decisional conflict. Methods: Patients (pts): English-speaking with GI cancer, ≤ monthly followup in MSK medical oncology clinics and believed by their oncologist able to complete study measures and to survive 1-12 months. Consented pts randomized 2:2:1 to P-COCC vs. video alone (V) vs. usual care (UC). Questionnaires: administered baseline and at next follow-up visit on validated measures of wellbeing, and on follow-up only, decisional conflict. P-COCC arm pts also completed 3 Likert scales (was the intervention helpful, comfortable and recommended to others?); a positive score on ≥1 of 3 indicated acceptability for that pt. Results: During screening from 9/2014-11/2016, 202 potentially eligible pts were approached. 51 (25%) declined participation (most common reason, N = 31 = not wanting to discuss the topic). 151 consented and were randomized; 99 (66% of the 151) completed study measures (most common attrition reason, N = 34 = disease progression or death). Of the 99, 63% male; mean age 61 years; mean ECOG PS 1; most common cancer types colorectal, gastroesophageal, and pancreatic; most white race, Christian religion and married. The primary aim was met: Among 33 pts, 32 (97%, 95%CI: 0.84-0.99, p < 0.001) rated P-COCC acceptable. Mean distress scores (0-10) increased (0.43) in the P-COCC arm but decreased in the V (-0.04) and UC (-0.21) arms (p = 0.03 and 0.04, P-COCC vs V and UC, respectively). There were no significant pre-post change scores on other measures of wellbeing (anxiety, depression, stress, acceptance, QOL), or intergroup differences in decisional conflict. Conclusions: Our values-based ACP paradigm is acceptable but may increase distress in GI cancer outpatients. Further studies will investigate underpinnings and follow-up duration of these observations, and ways to best support cancer patients (with any cancers, and regardless of prognosis) in ACP. Clinical trial information: NCT01912131.

7 Background: Discussing CPR preferences with patients with advanced cancer who are hospitalized is a critical component of end-of-life decision making. However, these discussions are challenging and often avoided by clinicians. We examined the impact of a CPR video decision tool on patients’ choices and knowledge about CPR, and their comfort with watching the video. Methods: We conducted a multi-center randomized controlled trial of 116 patients with advanced cancer hospitalized at two academic oncology centers. We randomized patients to either a 3-minute video describing CPR (n = 52) or standard-oncology care (n = 64). The primary outcome was participants’ preferences for CPR (immediately after viewing the video in the intervention arm). Secondary outcomes included patients’ knowledge (using 5-item questionnaire with higher score reflects greater knowledge), and intervention participants’ comfort with watching the video. Results: The mean age was 66 years (SD = 12); 50% were women, 84% were white, and 48% had lung or gastrointestinal cancer. Only 47% of study participants reported having a discussion about their CPR preferences at the time of admission to the hospital. At baseline, there were no differences in patients’ preferences for not wanting CPR between the intervention and control arms (63% vs. 58%, P = 0.79). After the intervention, participants randomized to the video were more likely not to want CPR (81% vs. 58%, P = 0.03) and were more knowledgeable (mean knowledge score 4.3 vs. 3.2, P < 0.0001) versus control participants. In the intervention arm, 81% of participants found the video helpful, and 94% felt comfortable watching it and would recommend it to others. Conclusions: Seriously ill hospitalized patients with advanced cancer who watched a CPR video decision support tool were more likely not to want CPR and were better informed about their options. Participants reported feeling comfortable watching the video and would recommend it to others facing similar decisions. Video decision support tools can facilitate end-of-life decision-making for hospitalized patients with advanced cancer. Clinical trial information: NCT01527331.

Purpose: Decision making regarding cardiopulmonary resuscitation (CPR) is challenging. This study examined the effect of a video decision support tool on CPR preferences among patients with advanced cancer.Patients and Methods: We performed a randomized controlled trial of 150 patients with advanced cancer from four oncology centers. Participants in the control arm (n = 80) listened to a verbal narrative describing CPR and the likelihood of successful resuscitation. Participants in the intervention arm (n = 70) listened to the identical narrative and viewed a 3-minute video depicting a patient on a ventilator and CPR being performed on a simulated patient. The primary outcome was participants' preference for or against CPR measured immediately after exposure to either modality. Secondary outcomes were participants' knowledge of CPR (score range of 0 to 4, with higher score indicating more knowledge) and comfort with video.Results: The mean age of participants was 62 years (standard deviation, 11 years); 49% were women, 44% were African American or Latino, and 47% had lung or colon cancer. After the verbal narrative, in the control arm, 38 participants (48%) wanted CPR, 41 (51%) wanted no CPR, and one (1%) was uncertain. In contrast, in the intervention arm, 14 participants (20%) wanted CPR, 55 (79%) wanted no CPR, and 1 (1%) was uncertain (unadjusted odds ratio, 3.5; 95% CI, 1.7 to 7.2; P < .001). Mean knowledge scores were higher in the intervention arm than in the control arm (3.3 ± 1.0 v 2.6 ± 1.3, respectively; P < .001), and 65 participants (93%) in the intervention arm were comfortable watching the video.Conclusion: Participants with advanced cancer who viewed a video of CPR were less likely to opt for CPR than those who listened to a verbal narrative.

Objective: Effective communication between intensive care unit (ICU) providers and families is crucial given the complexity of decisions made regarding goals of therapy. Using video images to supplement medical discussions is an innovative process to standardize and improve communication. In this six-month, quasi-experimental, pre-post intervention study we investigated the impact of a cardiopulmonary resuscitation (CPR) video decision support tool upon knowledge about CPR among surrogate decision makers for critically ill adults. Methods: We interviewed surrogate decision makers for patients aged 50 and over, using a structured questionnaire that included a four-question CPR knowledge assessment similar to those used in previous studies. Surrogates in the post-intervention arm viewed a three-minute video decision support tool about CPR before completing the knowledge assessment and completed questions about perceived value of the video. Results: We recruited 23 surrogates during the first three months (pre-intervention arm) and 27 surrogates during the latter three months of the study (post-intervention arm). Surrogates viewing the video had more knowledge about CPR ( p =0.008); average scores were 2.0 (SD 1.1) and 2.9 (SD 1.2) (out of a total of 4) in pre-intervention and post-intervention arms. Surrogates who viewed the video were comfortable with its content (81% very) and 81% would recommend the video. CPR preferences for patients at the time of ICU discharge/death were distributed as follows: pre-intervention: full code 78%, DNR 22%; post-intervention: full code 59%, DNR 41% ( p =0.23).

Objective: To determine the impact of a video on preferences for the primary goal of care. Design, subjects, and intervention: Consecutive subjects 65 years of age or older (n=101) admitted to two skilled nursing facilities (SNFs) were randomized to a verbal narrative (control) or a video (intervention) describing goals-of-care options. Options included: life-prolonging (i.e., cardiopulmonary resuscitation), limited (i.e., hospitalization but no cardiopulmonary resuscitation), or comfort care (i.e., symptom relief). Main measures: Primary outcome was patients' preferences for comfort versus other options. Concordance of preferences with documentation in the medical record was also examined. Results: Fifty-one subjects were randomized to the verbal arm and 50 to the video arm. In the verbal arm, preferences were: comfort, n=29 (57%); limited, n=4 (8%); life-prolonging, n=17 (33%); and uncertain, n=1 (2%). In the video arm, preferences were: comfort, n=40 (80%); limited, n=4 (8%); and life-prolonging, n=6 (12%). Randomization to the video was associated with greater likelihood of opting for comfort (unadjusted rate ratio, 1.4; 95% confidence interval [CI], 1.1–1.9, p=0.02). Among subjects in the verbal arm who chose comfort, 29% had a do-not-resuscitate (DNR) order (κ statistic 0.18; 95% CI–0.02 to 0.37); 33% of subjects in the video arm choosing comfort had a DNR order (κ statistic 0.06; 95% CI–0.09 to 0.22). Conclusion: Subjects admitted to SNFs who viewed a video were more likely than those exposed to a verbal narrative to opt for comfort. Concordance between a preference for comfort and a DNR order was low. These findings suggest a need to improve ascertainment of patients' preferences. Trial Registration: Clinicaltrials.gov Identifier: NCT01233973.

BACKGROUND: The authors tested whether an educational video on the goals of care in advanced cancer (life‐prolonging care, basic care, or comfort care) helped patients understand these goals and had an impact on their preferences for resuscitation.METHODS: A survey of 80 patients with advanced cancer was conducted before and after they viewed an educational video. The outcomes of interest included changes in goals of care preference and knowledge and consistency of preferences with code status.RESULTS: Before viewing the video, 10 patients (13%) preferred life‐prolonging care, 24 patients (30%) preferred basic care, 29 patients (36%) preferred comfort care, and 17 patients (21%) were unsure. Preferences did not change after the video, when 9 patients (11%) chose life‐prolonging care, 28 patients (35%) chose basic care, 29 patients (36%) chose comfort care, and, 14 patients (18%) were unsure (P = .28). Compared with baseline, after the video presentation, more patients did not want cardiopulmonary resuscitation (CPR) (71% vs 62%; P = .03) or ventilation (80% vs 67%; P = .008). Knowledge about goals of care and likelihood of resuscitation increased after the video (P < .001). Of the patients who did not want CPR or ventilation after the video augmentation, only 4 patients (5%) had a documented do‐not‐resuscitate order in their medical record (kappa statistic, −0.01; 95% confidence interval, −0.06 to 0.04). Acceptability of the video was high.CONCLUSIONS: Patients with advanced cancer did not change care preferences after viewing the video, but fewer wanted CPR or ventilation. Documented code status was inconsistent with patient preferences. Patients were more knowledgeable after the video, reported that the video was acceptable, and said they would recommend it to others. The current results indicated that this type of video may enable patients to visualize “goals of care,” enriching patient understanding of worsening health states and better informing decision making. Cancer 2012. © 2012 American Cancer Society.