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.
Cet article est le compte-rendu d'un travail d'évaluation d'un cours de SESAME (Enjeux Sociaux et Ethique de la Santé et de la Médecine) réalisé par quatre étudiants en médecine sur le sujet de l'annonce d'un diagnostic difficile au patient. Ils ont réalisé un DVD interactif pour les professionnels de santé sur ce problème délicat. Leur film présente une situation clinique : celui d'une patiente de 45 ans dont on découvre tardivement qu'elle souffre d'un cancer des poumons. Il est constitué de cinq vignettes cliniques comparant à chaque fois une bonne et une mauvaise attitude et réunissant des "repères" importants. Ces seize points de repères sont listés à la fin de l'article.
Le Life Tape Project (LTP) , Projet Enregistrer la Vie, a été conçu pour favoriser la communication entre les patients atteints de cancer et leurs familles. Il s'agit d'une interview enregistrée à domicile ou dans un cadre hospitalier avec le patient, sa famille et/ou une personne qui lui est chère. Devant la caméra et sous l'égide d'un interviewer expérimenté, sont évoqués le vécu de la maladie, les souffrances, les craintes,...mais aussi l'histoire familiale du patient et les questions existentielles sur la vie. Le support d'enregistrement, VHS ou DVD peut ensuite être transmis à la famille y compris la famille élargie et les amis pour faciliter la communication. Il peut aussi avoir valeur d'héritage pour l'entourage.
Présentation d'un document pédagogique audiovisuel destiné aux soignants et aux étudiants montrant l'intérêt de cette position de 3/4 pour effectuer des soins à des personnes grabataires ou en fin de vie,
En 1997, un projet de multimédia interactif en soins palliatifs a étudié les avantages d'utiliser les technologies de la communication audio-visuelle dans différents secteurs. Il est noté l'intérêt de la vidéo-conférence sur les coûts et la possibilité d'établir des liens entre les équipes de soins palliatifs dans le monde entier. Cette technique a servi également pour soutenir des patients à domicile, relier d'autres malades à des membres de leur famille et à former des médecins en milieu rural. Un centre oncologique japonais utilise régulièrement ce moyen de communication.
Catalogue et filmographie extrêmement complets des documents audiovisuels concernant la mort et ses sujets annexes, qui ont été projetés lors d'un festival au Forum des Halles de Paris le premier trimestre 2001.
Dans un premier temps, l'auteur présente le développement et l'attitude de l'enfant face à la mort. Puis sont exposées des considérations générales sur l'art et la mort (définition de l'imaginaire et influence artistique dans nos sociétés). Enfin, l'auteur établit le cadrage de son projet et envisage la méthodologie et la mise en oeuvre du documentaire pour la réalisation du court-métrage.