BACKGROUND: In 2019, the Patient Autonomy Act went into effect, allowing Taiwanese citizens to establish legal advance decisions. In an effort to secure a more realistic and accurate perception of situations, a virtual reality video was developed by the palliative care team of Chi-Mei hospital in southern Taiwan for citizens to use before advance care planning. This study explores the change in participants' preference and certainty regarding end-of-life decisions after using this tool.
METHODS: Participants were at least 20 years old and capable of reading and understanding the information provided in the written handout with information about the legal process of making an advance decision. They completed pre-test questionnaires, viewed a six-minute 360-degree virtual reality video on a portable headset, and then completed a post-test questionnaire about their preference on the five medical options-CPR, life-sustaining treatments, antibiotics, blood transfusion, and artificial nutrition and hydration-followed by feedback on the helpfulness of the virtual reality. The control group included 40 participants who only read the handout and completed pre-test and post-test questionnaires.
RESULTS: After viewing the virtual reality video, preference for not using CPR, life-sustaining treatment, antibiotics, blood transfusion, and artificial nutrition and hydration increased significantly in the virtual reality intervention group. Uncertainty regarding the five medical options mentioned above significantly decreased. The intervention was generally recognized by participants for its help in making decisions.
DISCUSSION: The decrease in the number of participants who could not make decisions indicates that the virtual reality video may be helpful for users in making end-of-life decision. According to feedback, the virtual reality video helped equip users with better understanding of medical scenarios, and that it is a good decision tool for advance care planning.
CONCLUSION: This is the first study since the Patient Autonomy Act has been passed that explores the effectiveness of using a virtual reality video as a decision tool in advance care planning and reveals decreased preference of CPR, life sustaining treatment, antibiotics, blood transfusion, and artificial nutrition and hydration after intervention. This decision aid proved to be an effective tool for clarifying their end-of-life care preferences.
Importance: Despite requirements of informed consent, patients with advanced cancer often receive palliative chemotherapy (PC) without understanding that the likelihood of cure is remote.
Objective: To determine whether a PC educational video and booklet at treatment initiation could improve patients’ understanding of its benefits and risks.
Interventions: Regimen-specific PC videos and booklets presenting information about logistics, potential benefits, life expectancy (optional), adverse effects, and alternatives. Videos featured authentic patients sharing diverse experiences. After receiving treatment recommendations, research assistants distributed materials to patients for independent review.
Design, Setting, and Participants: Multicenter randomized clinical trial of patients with advanced colorectal or pancreatic cancer starting first-line or second-line PC in 5 US cancer centers with enrollment from June 2015 to September 2017 and follow-up to December 2019.
Main Outcomes and Measures: The primary outcome was accurate expectations of chemotherapy benefits at 3 months, defined as responding “not at all likely” to “What is your understanding of how likely the chemotherapy is to cure your cancer?” (from the Cancer Care Outcomes Research and Surveillance study). Secondary outcomes included understanding of adverse effects, decisional conflict (SURE test), regret (Decisional Regret Scale), and distress (Functional Assessment of Cancer Therapy–General emotional well-being subscale).
Results: Among 186 patients with advanced colorectal or pancreatic cancer who were starting first-line or second-line PC (94 randomized to usual care, 92 to intervention; mean [SD] age, 59.3 [12.6] [range, 28-86] years; 107 [58%] male; 118 [63.4%] colorectal and 68 [36.6%] pancreatic cancer), most patients wanted “a lot” of information or “as much information as possible” about adverse effects (149, 80.1%), likelihood of cure (148, 79.6%), and prognosis (148, 79.6%). Among the intervention arm, 59 (78%) reviewed the booklet and 30 (40%) reviewed the video within 2 weeks. The primary outcome did not differ between intervention and control arms (52.6%; 95% CI, 40.3%-65.0%; vs 55.5%; 95% CI, 45.1%-66.0%). Accurate adverse effect understanding was more common among intervention than control patients (56.0%; 95% CI, 44.3%-67.7%; vs 40.2%; 95% CI, 29.5%-50.9%; P = .05), although this did not meet the threshold for statistical significance. The intervention did not increase distress, despite frank prognostic information. Other secondary outcomes were similar.
Conclusions and Relevance: Provision of an educational video and booklet did not alter patients’ expectation of cure from PC. Alternative delivery strategies, such as integration with nurse teaching, could be explored in future studies.
INTRODUCTION: Advance care planning (ACP) is associated with improved health outcomes for patients with cancer, and its absence is associated with unfavourable outcomes for patients and their caregivers. However, older adults do not complete ACP at expected rates due to patient and clinician barriers. We present the original design, methods and rationale for a trial aimed at improving ACP for older patients with advanced cancer and the modified protocol in response to changes brought by the COVID-19 pandemic.
METHODS AND ANALYSIS: The Advance Care Planning: Promoting Effective and Aligned Communication in the Elderly study is a pragmatic, stepped-wedge cluster randomised trial examining a Comprehensive ACP Program. The programme combines two complementary evidence-based interventions: clinician communication skills training (VitalTalk) and patient video decision aids (ACP Decisions). We will implement the programme at 36 oncology clinics across three unique US health systems. Our primary outcome is the proportion of eligible patients with ACP documentation completed in the electronic health record. Our secondary outcomes include resuscitation preferences, palliative care consultations, death, hospice use and final cancer-directed therapy. From a subset of our patient population, we will collect surveys and video-based declarations of goals and preferences. We estimate 11 000 patients from the three sites will be enrolled in the study.
ETHICS AND DISSEMINATION: Regulatory and ethical aspects of this trial include Institutional Review Board (IRB) approval via single IRB of record mechanism at Dana-Farber Cancer Institute, Data Use Agreements among partners and a Data Safety and Monitoring Board. We plan to present findings at national meetings and publish the results.
OBJECTIVE: Hospice family caregivers are seeking additional information related to patient care, pain and symptom management, and self-care. This study interviewed hospice staff about the potential dissemination of bilingual telenovelas to address these caregiver needs.
METHODS: Qualitative structured phone interviews were conducted with 22 hospice professionals from 17 different hospice organizations in 3 different Midwest states. The interviews were conducted from October to December 2019. Hospice staff volunteers were recruited from conferences, then individual interviews were audio-recorded, transcribed, and thematic analysis was conducted to gain an in-depth understanding of how to best implement telenovela video education into hospice care.
RESULTS: Most participants were hospice nurses (36%) located primarily in Missouri (91%), with a mean of 9 years of experience. Three discrete themes emerged, the educational resources currently provided to patient/families, perceptions of the usefulness of telenovelas for education, and practical suggestions regarding the dissemination of telenovelas. The development of 4 telenovela videos covering different topics is described.
CONCLUSION: Hospice staff responded favorably to the concept of telenovelas and identified important keys for dissemination.
Background: Patients with advanced cancer and their caregivers have substantial misperceptions regarding hospice, which contributes to its underuse.
Methods: The authors conducted a single-site randomized trial of a video educational tool versus a verbal description of hospice in 150 hospitalized patients with advanced cancer and their caregivers. Patients without a caregiver were eligible. Intervention participants (75 patients and 18 caregivers) viewed a 6-minute video depicting hospice. Control participants (75 patients and 26 caregivers) received a verbal description identical to the video narrative. The primary outcome was patient preference for hospice. Secondary outcomes included patient and/or caregiver knowledge and perceptions of hospice, and hospice use.
Results: Between February 2017 and January 2019, approximately 55.7% of eligible patients (150 of 269 eligible patients) and 44 caregivers were enrolled. After the intervention, there was no difference noted with regard to patients' preferences for hospice (86.7% vs 82.7%; P = .651). Patients in the video group reported greater knowledge regarding hospice (9.0 vs 8.4; P = .049) and were less likely to endorse that hospice is only about death (6.7% vs 21.6%; P = .010). Among deceased patients, those assigned to the intervention were more likely to have used hospice (85.2% vs 63.6%; P = .01) and to have had a longer hospice length of stay (median, 12 days vs 3 days; P < .001). After the intervention, caregivers assigned to view the video were more likely to prefer hospice for their loved ones (94.4% vs 65.4%; P = .031), reported greater knowledge concerning hospice (9.7% vs 8.0%; P = .001), and were less likely to endorse that hospice is only about death (0.0% vs 23.1%; P = .066).
Conclusions: A hospice video did not significantly impact patients' preferences for hospice care. Patients with advanced cancer and their caregivers who were assigned to view the video were more informed regarding hospice and reported more favorable perceptions of hospice. Patients were more likely to use hospice and to have a longer hospice length of stay.
Objective: To test the effectiveness of theoretically driven role model video stories in improving knowledge of palliative care among a diverse sample of older adults.
Method: We developed three 3–4 min long theoretically driven role model video stories. We then recruited cognitively intact, English-speaking adults aged 50 and older from senior centers, assisted living, and other community-based sites in the greater Los Angeles area. Using a pretest–posttest study design, we surveyed participants using the 13-item Palliative Care Knowledge Scale (PaCKS) and also asked participants about their intentions to enroll in palliative care should the need arise. Participants first completed the pretest, viewed the three videos, then completed the posttest comprised of the same set of questions.
Results: PaCKS score improved from an average of 4.5 at baseline to 10.0 following video screening (t(126) = 12.0, p < 0.001). Intentions to enroll oneself or a family member in palliative care rose by 103% ( 2 = 7.8, p < 0.01) and 110% ( 2 = 7.5, p < 0.01), respectively. Regression analysis revealed that participants who believed the role models are real people (ß = 2.6, SE = 1.2, p < 0.05) significantly predicted higher change in PaCKS score. Conversely, participants with prior knowledge of, or experience with, palliative care (ß = -5.9, SE = 0.8, p < 0.001), non-whites (ß = -3.6, SE = 0.9, p < 0.001), and widows (ß = -2.9, SE = 1.1, p < 0.01) significantly predicted lower changes in PaCKS score.
Significance of results: This study suggests that theoretically driven role model video stories may be an effective strategy to improve palliative care knowledge. Role model video stories of diverse palliative care patients provide one way to mitigate health literacy barriers to palliative care knowledge.
During the Covid-19 pandemic, a strategy to minimise face-to-face (FtF) visits and limit viral spread is essential. Video consultations offer clinical assessment despite restricted movement of people.
We undertook a rapid literature review to identify the highest currently available level of evidence to inform this major change in clinical practice. We present a narrative synthesis of the one international and one national guideline and two systematic reviews—all published within the last 18 months.
The global evidence appears to support video consultations as an effective, accessible, acceptable and cost-effective method of service delivery. Organisations must ensure software is simple, effective, reliable and safe, with the highest level of security for confidentiality.
Although video consultations cannot fully replace FtF, they can radically reduce the need for FtF and the risk of Covid-19 spread in our communities while maintaining high standards of care. For patient safety, it will be critical to follow the WHO guidance regarding: a standard operating procedure; clinical protocols for when video consultations can (and cannot) be used; policies to ensure equity of access in disadvantaged populations; adequate staff training; and administrative support to coordinate appointments.
The complexities surrounding the dying process may distort rational decision-making and impact care at the end of life. Advance care planning, which focuses on identifying the individual's definition of quality of life, holds great potential to provide clarity at the end of life. Currently, young adults are not the intended audience for advance care planning. A quality improvement project engaged 36 college-age adults in structured group advance care planning discussions and evaluated the perceived value of a self-recorded advance directive. Findings from a pre- and postintervention survey suggested that young adults welcomed a conversation about end-of-life care; they wished for more information and expressed that a video-recorded advance directive stimulated thoughts about their own definition of quality of life. Participants' improved self-perception of comfort, confidence, certainty, and knowledge regarding the advance care planning process and end-of-life care indicated young adults may be a willing and eager population for the expansion of advance care planning. In addition to directing advance care planning to a younger audience, a personal video-recorded advance directive may complement the current advance care planning process and aid individuals in defining their quality of life.
Context: Advance care planning (ACP) in a healthy general population could improve the quality of care when a health problem arises.
Objectives: The purpose of this study was to evaluate the efficacy of video decision-support aid in increasing the intention to document ACP in the general, healthy population.
Methods: In this randomized controlled trial, we enrolled 250 members of the general population (aged =20 years and determined to be healthy), stratified by age and sex. The intervention was a video that provided information about ACP and end-of-life care options such as CPR and palliative care. An attention-control arm was given a booklet about advance directives. Primary outcome was a change in intention to document ACP. Secondary outcomes included the intention to refuse CPR at terminal status, CPR and palliative care knowledge score, and the Hospital Anxiety and Depression Scale (HADS).
Results: 250 participants were randomly assigned, half to the video-assisted intervention group and half to the attention-control group. Within 1 week post-intervention, the intention to document ACP was significantly higher in the video-assisted intervention arm (68.0% vs 39.2%; p < 0.001) and changes in the intention to document ACP were significantly greater in the video group than in the brochure group (p = 0.008; = 14.4%). Palliative care knowledge score was also significantly increased in the video group (p = 0.036).
Conclusion: A well-constructed, video decision support intervention can increase the intention to document ACP in the general population that presumably had little opportunity to discuss ACP with physicians.
Objectives: A randomized control trial (RCT) to estimate the effect of an interventional video on improving palliative care knowledge, acceptability and attendance to outpatient services in gynecologic oncology patients.
Methods: Women receiving treatment for gynecologic malignancy recruited at an academic tertiary care center were randomized to: palliative care educational video or non-directive cancer center video. The primary outcome was referral to palliative care. Function and knowledge were assessed using the Functional Assessment of Cancer Therapy and the Palliative Care Knowledge Scale. Data analyses were performed using t-tests, Wilcoxon rank sum or Fisher's exact tests with significance level of a = 0.05.
Results: 111 women were enrolled. Demographic characteristics were equally distributed between groups with respect to age, race, cancer, and stage. There was no statistical difference in knowledge scores or in referral to palliative care between the patients that watched the educational versus control video (29% vs. 27%; p = .79). Secondary analysis showed a statistically significant increase in utilization of palliative care services compared to historic institutional data (8.8% to 31.5%; p =.001). Further, those referred had significantly worse baseline functional scores.
Conclusions: Use of a palliative care educational video did not increase knowledge or acceptability of palliative services within this RCT. However, the rate of patients referred to palliative care tripled compared to historic rates. Further studies should investigate whether discussion regarding palliative care services alone may increase desire for referral, and if use of Fact-G scores may identify patients in greatest need of services.
OBJECTIVE: Interventions are needed to improve mental health (i.e., depression, anxiety) and palliative care (i.e., symptoms, goals of care, and advance care planning) outcomes in Latino/as with advanced cancer.
METHODS: An interprofessional study team used the Ecological Validity Model and a participatory approach to adapt an evidence-based counseling intervention for Latino/as and integrate the counseling intervention with an evidence-based patient navigator intervention. Next, a small pilot study was conducted to understand and improve the feasibility of the integrated Puente para Cuidar intervention.
RESULTS: Adaptations were made to language, literacy, and content of the counseling intervention, and video vignettes of the counseling case studies were produced on the recommendation of Latino/a stakeholders. Bicultural, bilingual patient navigators were used as "cultural brokers" between Latino/a patients and the counselor. The pilot study of Puente para Cuidar demonstrated feasibility based on participant perception of helpfulness and acceptability and nearing goal visit completion rates.
CONCLUSIONS: A culturally adapted intervention to address mental health and palliative care needs in Latino/as with advanced cancer was developed from prior evidenced-based interventions using a cultural adaptation model and a participatory approach. The intervention is ready for effectiveness testing.
This study expanded upon previous scholarship by examining end-of-life (EOL) depictions and messages of death within Disney and Pixar animated films. We argue Disney and Pixar depictions of EOL and death can provide critical opportunities for discussing death and dying processes with children and adults alike. A content analysis of 57 movies resulted in a total of 71 character deaths. These instances of death became the discourse used for analysis. The EOL discourse was coded based on five categories (character status, depiction of death, death status, emotional reaction, and causality). After quantitative analysis, the films were qualitatively analyzed. Four themes emerged from analysis, unrealistic moments, managing EOL, intentions to kill, and transformation and spiritual connection. Discussion of results, limitations, and directions for future research are included.
Healthcare services are often out of sync with cultural, spiritual and religious perspectives on health, death, and grieving. This dissonance affects attitudes and behaviours in seeking and utilizing end-of-life health services and can lead to poor clinical communication, misunderstanding, and anxiety as patients, families and health providers interact during a serious illness. To address a gap in cultural-specific information Canadian Virtual Hospice launched LivingMyCulture.ca-an evidence-informed collection of videos of immigrants, refugees, and Indigenous people sharing their stories about the intersection of culture, spirituality, and religion with their experiences of advanced illness, palliative care, and grief. The video repository includes over 650 video clips, available in 11 different languages. These narratives empower and educate patients and their families by raising their awareness about accessing, advocating, and receiving culturally safe and inclusive care as they navigate the Canadian healthcare system. LivingMyCulture.ca also promotes culturally sensitive care among health providers to enhance their knowledge and skills in providing culturally safe and inclusive care in order to improve care outcomes. This presentation will introduce LivingMyCulture.ca, provide strategies for incorporating the tool into practice to support patient and family care and share summative evaluation results. A Somali-Canadian journalist and community leader will share her unique Muslim and Somali perspective about the way illness, dying and grief is approached and the impact of LivingMyCulture.ca in the community. Overviews of other culture groups' video resources will also be shared, reflecting Canada's rich cultural tapestry. This workshop will provide an overview of LivingMyCulture.ca, share video clips from the 11 cultures in the series and include a discussion with a Somali-Canadian journalist and community leader about the way people in her culture approach illness, dying and grief and the overall impact of LivingMyCulture.ca.
Me & My Wishes are facilitated, resident-centered video-recorded conversations to communicate current and end-of-life care preferences. We describe the video production process of two prototypes in the long-term care (LTC) setting and discuss lessons learned around developing this type of intervention. Partnering with an LTC community allowed us to create videos on-site, document staff time, handle any barriers with video production, and evaluate the process. In this article, we will describe the process of two residents creating Me & My Wishes videos. Both residents responded positively to viewing their edited video (about 20 min), saying the videos would be "good for family or staff to hear feelings about preferences." Staff members also responded positively to the videos. We discuss two key issues to consider: the possibility that resident preferences may change and the resources to produce and view videos.
BACKGROUND/OBJECTIVES: This study aims to identify resident characteristics associated with being offered and subsequently shown an advance care planning (ACP) video in the Pragmatic Trial of Video Education in Nursing Homes (PROVEN) and if differences are driven by within- and/or between-facility differences.
DESIGN: Cross-sectional study, from March 1, 2016, to May 31, 2018.
SETTING: A total of 119 PROVEN intervention nursing homes (NHs).
PARTICIPANTS: A total of 43 303 new NH admissions.
MEASUREMENTS: Data came from the Minimum Data Set and an electronic record documenting whether a video was offered and shown to residents. We conduct both naïve logistic regression models and hierarchical logistic models, controlling for NH fixed effects, to examine the overall differences in offer and show rate by resident characteristics.
RESULTS: In naïve regression models, compared to white residents, black residents are 7.8 percentage point (pp) (95% confidence interval [CI] = -9.1 to -6.5 pp) less likely to be offered the video. These differences decrease to 1.3 pp (95% CI = -2.61 to -0.02 pp) when accounting for NH fixed effects. In fully adjusted models, black residents compared to white residents were 2.1 pp more likely to watch the video contingent on being offered (95% CI = 0.4-3.7 pp). Residents with cognitive impairment were less likely to be offered and shown the video.
CONCLUSIONS: After controlling for NH fixed effects, there were smaller racial differences in being offered the video, but once offered, black residents were more likely to watch the video. This suggests that black residents are receptive to this type of ACP intervention but need to be given an opportunity to be exposed.
CONTEXT: Advanced cancer patients have unrecognized gaps in their understanding about palliative radiation therapy (PRT).
OBJECTIVES: To build a video decision aid for hospitalized patients with advanced cancer referred for PRT and prospectively test its efficacy in reducing decisional uncertainty, improving knowledge, increasing treatment readiness and readiness for palliative care consultation, and its acceptability among patients.
METHODS: Forty patients with advanced cancer hospitalized at Memorial Sloan Kettering Cancer Center watched a video decision aid about PRT and palliative care. Patients' conceptual and logistical knowledge of PRT, decisional uncertainty, treatment readiness, and readiness for palliative care consultation were assessed before and after watching the video with a 6-item knowledge survey, the decisional uncertainty subscale of the Decisional Conflict Scale, and Likert instruments to assess readiness to accept radiation treatment and/or palliative care consultation, respectively. A post-video survey assessed the video's acceptability among patients.
RESULTS: After watching the video, decisional uncertainty was reduced (28.3 vs. 21.7, p=0.02); knowledge of PRT improved (60.4 vs. 88.3, p<0.001); and PRT readiness increased (2.0 vs. 1.3, p=0.04). Readiness for palliative care consultation was unchanged (p=0.58). Patients felt very comfortable (70%) watching the video and would highly recommend it (75%) to others.
CONCLUSION: Among hospitalized patients with advanced cancer, a video decision aid reduced decisional uncertainty, improved knowledge of PRT, increased readiness for PRT, and was well-received by patient viewers.
OBJECTIVE: To investigate the effect of a newly developed telenovela, or video soap opera, on healthcare professionals (HCP)' awareness of caregivers' stress and patients' cultural approaches to end-of-life (EOL) care decisions.
METHODS: A multi-center cross-sectional study among three communities in New York, Miami and Missouri. Participants from a convenience sample of multidisciplinary HCP were randomly assigned to view power point presentation with either a control-video or an intervention-telenovela about caregiving as part of a one- hour audiovisual seminar and completed a pre-posttest questionnaire to evaluate reaction and learning.
RESULTS: Participants (N-142) were mostly female (80%) nurses (54%) with a mean age of 44.5±12.4 years, and from Non-Hispanic white (41%) or Hispanics (37%) ethnicity. In both control and intervention groups post-test responses demonstrated a high level (87%) of satisfaction with seminar, and an increase in openness to discuss EOL issues with culturally diverse patients (p<.001). While both groups reported post-test improvement in awareness of health literacy, cultural competency skills, cultural differences about EOL attitudes, family caregiver stress and possible interventions, this improvement was significantly higher in the intervention group (p<.05) as compared to the control group. CONCLUSION: The telenovela was effective in increasing healthcare workers' awareness of caregivers stress and cultural approach to EOL decisions. There is need for ongoing efforts to educate HCP on cultural sensitivity in order to help ethnically diverse caregivers and their patients benefit from EOL care.
Ce mémoire est l'aboutissement de 3 mois de stage au Centre De Ressources National soins palliatifs François-Xavier Bagnoud, au service Information et Documentation. La valorisation du fonds audiovisuel a été menée à bien à travers différentes phases. La première a consisté à analyser et faire un état des lieux des vidéos présentes dans la vidéothèque. Pour cela, un inventaire a été mis à jour. La deuxième étape a consisté à analyser les publics utilisateurs du fonds et à déterminer leurs besoins face à celui-ci. Les formateurs du CDRN FXB sont incontestablement le public qui utilise le plus ces documents. Pour déterminer leurs attentes, un questionnaire a été mis en place. Enfin, la dernière étape a consisté à prendre en compte les besoins des utilisateurs et à mettre en place des outils documentaires adaptés pour les formateurs.
Cet article traite tout d'abord de la question de la détermination de l'intensité des soins en donnant une définition de cette notion, un aperçu des situations cliniques qui y sont liées et une analyse des repères juridiques, cliniques et éthiques qui l'encadrent. Il en découle une exigence d'inclure et de faciliter une communication en temps opportun des volontés de l'individu relatives à cette intensité des soins. C'est pourquoi, dans un deuxième temps, est présenté un projet de sensibilisation des patients à la communication sous forme de documentaire vidéographique (support DVD) de quinze minutes intitulé : "Traitements prolongeant la vie : j'y pense, j'en parle" contenant des témoignages de patients et de soignants. Ce projet est une action du Comité de bioéthique.