CONTEXT: Few randomized controlled trials of advance care planning with a decision aid (DA) show an effect on patient preferences for end-of-life (EOL) care over time, especially in racial/ethnic settings outside the United States.
OBJECTIVES: The objective of this study was to examine the effect of a decision aid consisting of a video and an advance care planning (ACP) booklet for end-of-life (EOL) care preferences among patients with advanced cancer.
METHODS: Using a computer-generated sequence, we randomly assigned (1:1) advanced cancer patients to a group that received a video and workbook that both discussed either ACP (intervention group) or cancer pain control (control group). At baseline, immediately post-intervention, and at 7 weeks, we evaluated the subjects' preferences. The primary outcome was preference for EOL care (active treatment, life-prolonging treatment, or hospice care) on the assumption of a fatal disease diagnosis and the expectation of death 1) within 1 year, 2) within several months, and 3) within a few weeks. We used Bonferroni correction methods for multiple comparisons with an adjusted p level of 0.005.
RESULTS: From August 2017 to February 2018, we screened 287 eligible patients, of whom 204 were enrolled to the intervention (104 patients) or the control (100 patients). At post-intervention, the intervention group showed a significant increase in preference for active treatment, life-prolonging treatment, and hospice care on the assumption of a fatal disease diagnosis and the expectation of death within 1 year (p<0.005). Assuming a life expectancy of several months, the change in preferences was significant for active treatment and hospice care (p<0.005) but not for life-prolonging treatment. The intervention group showed a significant increase in preference for active treatment, life-prolonging treatment, and hospice care on the assumption of a fatal disease diagnosis and the expectation of death within a few weeks (p<0.005). From baseline to 7 weeks, the decrease in preference in the intervention group was not significant for active treatment, for life-prolonging treatment, and for hospice care in the intervention group in the subset expecting to die within 1 year, compared with the control group. Assuming a life expectancy of several months and a few weeks, the change in preferences was not significant for active treatment and for life-prolonging treatment, but was significantly greater for hospice care in the intervention group (p<0.005).
CONCLUSION: ACP interventions that included a video and an accompanying book improved preferences for EOL care.
Pour aborder les diverses formes que peut prendre la mort dans les jeux vidéo comme un phénomène unitaire que, faute de disposer comme en allemand du neutre (das Tode, « ce qui est mort ») ou de pouvoir inventer un terme spécifique, nous nommerons simplement : la mort, nous retenons trois lignes de force qui sont autant de pistes de lecture. Nous les donnons ci-après en ordre croissant d’importance. Il faut, disons-nous, préciser le rôle des jeux vidéo en tant que spectacles mettant en scène ce phénomène. Leur existence est certes encore trop récente et leur évolution trop rapide pour qu’il soit possible d’établir à leur sujet un bilan définitif. Tout ce qui va suivre n’a donc qu’un caractère provisoire, voire hypothétique.
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BACKGROUND: Medical robots are increasingly used for a variety of applications in healthcare. Robots have mainly been used to support surgical procedures, and for a variety of assistive uses in dementia and elderly care. To date, there has been limited debate about the potential opportunities and risks of robotics in other areas of palliative, supportive and end-of-life care.
AIM: The objective of this article is to examine the possible future impact of medical robotics on palliative, supportive care and end-of-life care. Specifically, we will discuss the strengths, weaknesses, opportunities and threats (SWOT) of this technology.
METHODS: A SWOT analysis to understand the strengths, weaknesses, opportunities and threats of robotic technology in palliative and supportive care.
RESULTS: The opportunities of robotics in palliative, supportive and end-of-life care include a number of assistive, therapeutic, social and educational uses. However, there are a number of technical, societal, economic and ethical factors which need to be considered to ensure meaningful use of this technology in palliative care.
CONCLUSION: Robotics could have a number of potential applications in palliative, supportive and end-of-life care. Future work should evaluate the health-related, economic, societal and ethical implications of using this technology. There is a need for collaborative research to establish use-cases and inform policy, to ensure the appropriate use (or non-use) of robots for people with serious illness.
Background: The lack of consumer knowledge and misconception of services could impede requests for and acceptance of palliative care. YouTube has been widely used for health information dissemination.
Objective: To explore the availability and characteristics of palliative care educational videos on YouTube and determine how palliative care is portrayed in these videos.
Methods: Keyword search and snowball methods were used to identify palliative care videos on YouTube. A structured data collection protocol was developed to record characteristics of a video. Descriptive analysis was used to describe the video features; logistic regression was conducted to determine the association between video characteristics and number of views per day.
Results: A total of 833 videos were screened; 84 met criteria for analysis. The most prominent video styles were providing palliative care information (85%) and personal testimony (50%). One-third were uploaded by hospice/palliative care services or medical organizations, while another one-third by advocacy organizations. More than two-thirds mentioned “end-of-life” and 35% mentioned “hospice.” Physicians most frequently appeared and served as protagonists. Protagonists were primarily female (71.0%), aged 18–64 years (81.7%), and white (90.3%). Compared with videos uploaded by health care agencies, those uploaded by advocacy organizations had 6.41 times higher odds of having more than one view per day (p = 0.002).
Conclusion: Online videos may not provide accurate and appropriate information on palliative care. There is minimal ethnic diversity in terms of physician and family representation. More research is needed to determine the effectiveness of these videos in improving consumer knowledge of palliative care.
The field of telehealth is rapidly growing and evolving across medical specialties and health care settings. While additional data are needed, telepalliative care (the application of telehealth technologies to palliative care) may help address important challenges inherent to our specialty, such as geography and clinician staffing; the burden of traveling to brick-and-mortar clinics for patients who are symptomatic and/or functionally limited; and the timely assessment and management of symptoms. Telepalliative care can take many forms, including, but not limited to, video visits between clinicians and patients, smartphone applications to promote caregiver well-being, and remote patient symptom-monitoring programs. This article, created by experts in telehealth and palliative care, provides a review of the current evidence for telepalliative care and potential applications and practical tips for using the technology.
Background: There is extensive need for palliative care worldwide, but access to care remains inadequate, especially for non-cancer patients. Video consultations are a promising tool in the provision of home-based palliative care, but an overview of evidence solely on video consultations in palliative care is lacking.
Aim: To review and synthesize current evidence regarding the use of video consultations in general and specialized palliative care to various patient groups.
Design: A systematic integrative review with a narrative synthesis was undertaken in accordance with PRISMA (2009) guidelines. PROSPERO #: CRD42018095383
Data sources: PubMed, Embase, CINAHL, and PsychINFO were searched for primary research articles published between 2005 and 2018. In addition, reference lists of included articles were hand searched.
Results: The search resulted in 813 articles; 39 articles were included in the review, consisting of mixed methods (n = 14), qualitative (n = 10), quantitative (n = 10), and case studies (n = 5). The studies mainly focused on specialized palliative care to adult patients with cancer in high income countries. Through data analysis, six themes addressing advantages/disadvantages and facilitators/barriers were identified: (1) Redesign of care, (2) Communication, (3) User perceptions, (4) Technology, (5) Privacy issues, and (6) Economic implications.
Conclusion: Using video technology in palliative care has both advantages and disadvantages. However, evidence beyond the focus on specialized palliative care and patients with cancer is limited. Future research should focus on how and when video consultations might replace in-person specialized palliative care and video consultations in general palliative care, in low and middle income countries; and involve patients with a non-cancer diagnosis.
CONTEXT: Low utilization of palliative care services warrant the development and testing of new solutions to educate and engage patients around the benefits of palliative care.
OBJECTIVES: We sought out to develop and test a novel, mobile health solution to prepare patients for an upcoming outpatient palliative care appointment.
METHODS: After developing a web-based tool called PCforMe (Palliative Care for Me), we conducted a randomized, active-controlled, trial of PCforMe. The primary outcome was the score on the System Usability Scale (SUS). Secondary outcomes were patient self-efficacy (measured by PEPPI) and change in knowledge (measured by a questionnaire). We compared PCforMe to three common online resources for patients seeking information about specialty palliative care.
RESULTS: 80 patients were randomized. There were no significant demographic differences. Mean SUS score for PCforMe was 78.2, significantly above the normative average SUS score of 68 (p-value<0.0001). Mean change in PEPPI score was -2.2 for PCforMe vs -1.7 for control group (p-value=0.72). Preparedness for an upcoming palliative care visit increased 50% in the intervention group versus 13.3% in the control group. Difference in the number of patients with improved knowledge regarding palliative care approached significance (p=0.06). Lastly, we found the no-show rate lower during Q1 2017 (during trial) versus Q1 2016 (before trial), at 11.7% versus 21% (p<0.05). Comparing the full calendar year 2016 versus 2017, we did not find a statistical difference (CY 2016 of 18.8% versus 15% in CY 2017; p=0.22).
CONCLUSION: PCforMe is a usable mobile health tool to educate and prepare patients for an upcoming palliative care appointment. Further research is needed to test effectiveness.
OBJECTIVES: To systematically search, evaluate and report the state of the science of electronic palliative care coordination systems (EPaCCS).
METHODS: We searched CINAHL, MEDLINE, Embase, the Cochrane Library and grey literature for articles evaluating or discussing electronic systems to facilitate sharing of information about advance care plans. Two independent review authors screened full-text articles for inclusion, assessed quality and extracted data.
RESULTS: In total, 30 articles and reports were included. Of the 26 articles, 14 were 'expert opinion' articles (editorials, discussion papers or commentaries), 9 were observational studies (cross-sectional, retrospective cohort studies or service evaluations), 2 were qualitative studies and 1 a mixed-methods study. No study had an experimental design. Quantitative studies described the proportion of people with EPaCCS dying in their preferred place, and associations between EPaCCS use and hospital utilisation. Qualitative, mixed-methods studies and reports described the burden of inputting data and difficulties with IT systems as main challenges of implementing EPaCCS.
CONCLUSIONS: Much of the current scientific literature on EPaCCS comprises expert opinion, and there is an absence of experimental studies evaluating the impact of EPaCCS on end-of-life outcomes. Given the current drive for national roll-out of EPaCCS by 2020, it is essential that rigorous evaluation of EPaCCS is prioritised.
To better understand the role of technology in later-life planning among older lesbian, gay, bisexual, and trans (LGBT) adults, we conducted focus groups to explore factors linked to diverse sexual orientations and gender identities. Twenty focus groups were facilitated across Canada with 93 participants aged 55 to 89. Constant comparative analysis yielded four categories: (a) fear, (b) individual benefits, (d) social elements, and (d) contextual elements. Fear related to technology and fear of end-of-life planning. Individual benefits referred to technology as a platform for developing LGBT identities and as a source of information for later-life planning. Social elements were establishment and maintenance of personal relationships and social support networks. Contextual elements referred to physical and situational barriers to technology use that limited access and usability. These findings can inform technological practice and services to enhance later-life planning.
BACKGROUND: Preoperative advance care planning (ACP) may benefit patients undergoing major surgery.
OBJECTIVE: To evaluate feasibility, safety, and early effectiveness of video-based ACP in a surgical population.
DESIGN: Randomized controlled trial with two study arms.
SETTING: Single, academic, inner-city tertiary care hospital.
SUBJECTS: Patients undergoing major cancer surgery were recruited from nine surgical clinics. Of 106 consecutive potential participants, 103 were eligible and 92 enrolled.
INTERVENTIONS: In the intervention arm, patients viewed an ACP video developed by patients, surgeons, palliative care clinicians, and other stakeholders. In the control arm, patients viewed an informational video about the hospital's surgical program.
MEASUREMENTS: Primary Outcomes-ACP content and patient-centeredness in patient-surgeon preoperative conversation. Secondary outcomes-patient Hospital Anxiety and Depression Scale (HADS) score; patient goals of care; patient and surgeon satisfaction; video helpfulness; and medical decision maker designation.
RESULTS: Ninety-two patients (target enrollment: 90) were enrolled. The ACP video was successfully integrated with no harm noted. Patient-centeredness was unchanged (incidence rate ratio [IRR] = 1.06, confidence interval [0.87–1.3], p = 0.545), although there were more ACP discussions in the intervention arm (23% intervention vs. 10% control, p = 0.18). While slightly underpowered, study results did not signal that further enrollment would have yielded statistical significance. There were no differences in secondary outcomes other than the intervention video was more helpful (p = 0.007).
CONCLUSIONS: The ACP video was successfully integrated into surgical care without harm and was thought to be helpful, although video content did not significantly change the ACP content or patient-surgeon communication. Future studies could increase the ACP dose through modifying video content and/or who presents ACP.
TRIAL REGISTRATION: clinicaltrials.gov Identifier NCT02489799.
BACKGROUND: In rural communities, providing hospice care can be a challenge. Hospice personnel sometimes travel great distances to reach patients, resulting in difficulty maintaining access, quality, cost-effectiveness, and safety. In 1998, the University of Kansas Medical Center piloted the country's first TeleHospice (TH) service. At that time, challenges with broad adoption due to cost and attitudes regarding technology were noted. A second TH project was launched in early 2017 using newer technology; this article updates that ongoing implementation.
METHODS: The Organizational Change Manager was followed for the guided selection of the hospice partner. The University of Kansas Medical Center partnered with Hospice Services, Inc. (HSI), a leader in rural hospice care, providing services to 16 Kansas counties. Along with mobile tablets, a secure cloud-based videoconferencing solution was chosen for ease of use.
RESULTS: From August 2017 through January 2018, 218 TH videoconferencing encounters including 917 attendees occurred. Calls were made for direct patient care, family support, and administrative purposes. These TH calls have been shown to save HSI money, and initial reports suggest they may strengthen the communication and relationships between staff, patients, and the patient's family.
CONCLUSION: Finding innovative, cost-effective, and community-driven approaches such as TH are needed to continually advance hospice care. TeleHospice's potential to supplement and improve hospice services while reducing costs is significant, but continued research is needed to understand best fit within frontier hospices, to inform future urban applications, and to address reimbursement.
BACKGROUND: Patient portals can offer patients an opportunity to engage in the advance care planning (ACP) process outside of clinical visits.
OBJECTIVE: To describe patient perspectives on use of patient portal-based ACP tools.
DESIGN: Interviews with patients who used portal-based ACP tools. The tools included an electronic Medical Durable Power of Attorney (MDPOA) form to designate a medical decision maker, a patient-centered educational web page, online messaging, and patient access to completed advance directives stored in the electronic health record (EHR).
SETTING: Regional health-care system with a common EHR.
MEASUREMENTS: Semistructured interviews with purposefully sampled patients who used the ACP tools. Questions explored motivations for using the tools and perceptions about how the tools fit into ACP. Analysis followed a grounded hermeneutic editing approach.
RESULTS: From 46 patients (mean age: 49, 63% female), 4 key themes emerged: (1) individualized explorations of the ACP tools, (2) personal initiation and engagement with ACP tools through the portal, (3) value of connecting ACP portal tools to clinical care, and (4) practicality of the ACP tools. Patients described benefits of communicating with health-care team members who referred them to online ACP tools, as well as having the electronic MDPOA form connected to clinical care.
CONCLUSIONS: Patients considered the portal-based ACP tools to be practical and feasible to use within the scope of their own ACP experiences. Further study is needed to understand whether portal-based ACP tools increase the quality and quantity of ACP conversations and documentation that is available to inform medical decision-making.
Advanced care planning (ACP) and end-of-life discussions are especially difficult among persons living with human immunodeficiency virus (HIV)/acquired immunodeficiency syndrome (AIDS) as a result of patients' lack of trust in family and providers, HIV-related stigma, misunderstood spirituality concerns, social isolation, and other factors. Previous research has demonstrated that relatively few persons living with HIV/AIDS engage in ACP, yet developing culturally sensitive methods of ACP is imperative. One such method is digital storytelling, a video narrative that can be used to share ideas or aspects of a life story. The aim of this study was to examine perspectives from providers and persons living with HIV/AIDS about the acceptability, benefits, and technological challenges of and barriers to using digital storytelling for ACP. A qualitative descriptive design was employed using focus groups of 21 participants in South Central Appalachia. Transcribed data were analyzed using qualitative content analysis. Findings revealed patient and provider ideas about ACP, factors related to digital story acceptability, stigma against persons living with HIV/AIDS, and concern for the legality of ACPs expressed in digital story format. Future research should focus on the process of creating digital stories as an intervention to improve ACP in this unique aggregate.
BACKGROUND: Virtual reality (VR) immersive environments have been shown to be effective in medical teaching. Our university hospital received funding from our deanery, Health Education in Wales, to film teaching videos with a 360-degree camera.
AIMS: To evaluate whether VR is an effective and acceptable teaching environment. VR headsets were set up for medical students who rotated through Velindre Cancer Hospital's Palliative Care department.
METHODS: Students were asked to put on a VR headset and experience a pre-recorded 27 min presentation on nausea and vomiting in palliative care settings. They subsequently viewed a radiotherapy treatment experience from a patient's point of view.
RESULTS: Of the 72 medical students who participated, 70 found the experience comfortable, with two students stating they felt the experience uncomfortable (1=too tight; 1=blurry visuals). Numerical scoring on ability to concentrate in VR from 0 to 10 (0=worst, 10=best) scored an average of 8.44 (range, 7-10). Asked whether this format suited their learning style, average score was 8.31 (range 6-10). 97.2 % (n=70) students stated that they would recommend this form of learning to a colleague, with one student saying he/she would not recommend and another stating he/she was unsure. Students left anonymous free-text feedback comments which helped frame future needs in this emerging area.
DISCUSSION: This study suggests that there is room for exploring new ways of delivering teaching and expanding it more widely in palliative care and oncology, but also provides feedback on areas that need further careful attention. Comments from students included: "Might have been the novelty factor but I learnt more from this 20 min VR thing than I have from many lectures".
SUMMARY: The project has proved sufficiently popular in medical student feedback, that the VR experience is now available on YouTube and has been permanently introduced into routine teaching. Further 360-degree teaching environments have been filmed. Of note is that our 360-degree videos have been viewed in Africa, so this format of teaching could prove valuable due to its global reach.
BACKGROUND: The work of specialized palliative care (SPC) teams is often challenged by substantial amounts of time spent driving to and from patients' homes and long distances between the patients and the hospitals.
OBJECTIVE: Video consultations may be a solution for real-time SPC at home. The aim of this study was to explore the use of video consultations, experienced by patients and their relatives, as part of SPC at home.
METHODS: This explorative and qualitative study included palliative care patients in different stages and relatives to use video consultations as a part of their SPC between October 2016 and March 2017. Data collection took place in the patients' homes and consisted of participant observations followed by semistructured interviews. Inclusion criteria consisted of patients with the need for SPC, aged more than 18 years, who agreed to participate, and relatives wanting to participate in the video consultations. Data were analyzed with Giorgi's descriptive phenomenological methodology.
RESULTS: A number of patients (n=11) and relatives (n=3) were included and, in total, 86 video consultations were conducted. Patients participating varied in time from 1 month to 6 months, and the number of video consultations per patient varied from 3 to 18. The use of video consultations led to a situation where patients, despite life-threatening illnesses and technical difficulties, took an active role. In addition, relatives were able to join on equal terms, which increased active involvement. The patients had different opinions on when to initiate the use of video consultations in SPC; it was experienced as optional at the initiating stage as well as the final stage of illness. If the video consultations included multiple participants from the SPC team, the use of video consultations could be difficult to complete without interruptions.
CONCLUSIONS: Video consultations in SPC for home-based patients are feasible and facilitate a strengthened involvement and communication between patients, relatives, and SPC team members.
Aim: To examine the effect of a video-supported nurse-led advance care planning to frail geriatric patients on end-of-life decision-making outcomes in patients and their carers.
Design: This is a double-blinded randomized controlled trial with parallel arms.
Methods: The protocol was approved by the Institutional Review Board of the participating hospital on 1 August 2018. Frail elders and their carer if any are enrolled during hospitalization, and undergo randomization after discharged. The intervention group receives a 2-week video-supported nurse-led advance care planning programme (N = 149) while the control group receives a 2-week health education program at home (N = 149). Follow-up surveys via telephone at 1 and 6 months measure outcomes regarding end-of-life decision-making from both the patients and the carers.
Conclusion: Advance care planning discussion is to understand patient's values, preferences and treatment for care on their anticipation of future deterioration. Treatment options for end-of-life care may not be well-received especially elders because in the discussion process, technical medical terms are presented in an abstract, hypothetical way that are hard to understand. The present study aims to evaluate the effect of a nurse-led advance care planning supplementing with a video showing end-of-life treatment options to promote end-of-life care decision-making among frail geriatric patients.
Impact: The results will help identify effective elements of advance care planning and inform the development of an evidence?based structured advance care planning intervention in response to the need for quality end-of-life care.
Background: Some terminal cancer patients wish to “go to a memorable place” or “return home.” However, owing to various symptom burdens and physical dysfunction, these wishes are difficult for them to realize.
Objective: The aim of the study is to verify whether simulated travel using virtual reality (VR travel) is efficacious in improving symptoms in terminal cancer patients.
Design: This is a prospective, multicenter, single-arm study.
Setting/Subjects: Twenty participants with terminal cancer were recruited from two palliative care wards; data were collected from November 2017 to April 2018.
Measurements: The VR software Google Earth VR® was used. The primary endpoint was the change in the Edmonton Symptom Assessment System scores for each symptom before and after VR travel.
Results: The average age of the participants was 72.3 (standard deviation [SD] = 11.9) years. Significant improvements were observed for pain (2.35, SD = 2.25 vs. 1.15, SD = 2.03, p = 0.005), tiredness (2.90, SD = 2.71 vs. 1.35, SD = 1.90, p = 0.004), drowsiness (2.70, SD = 2.87 vs. 1.35, SD = 2.30, p = 0.012), shortness of breath (1.74, SD = 2.73 vs. 0.35, SD = 0.99, p = 0.022), depression (2.45, SD = 2.63 vs. 0.40, SD = 0.82, p = 0.001), anxiety (2.60, SD = 2.64 vs. 0.80, SD = 1.51, p < 0.001), and well-being (4.50, SD = 2.78 vs. 2.20, SD = 1.99, p < 0.001; pre- vs. post-VR travel score, respectively). No participants complained of serious side effects.
Conclusions: This preliminary study suggests that VR travel can be efficacious and safe for terminal cancer patients for improving symptom burden.
A growing number of companies are offering digital products and services for use in funerals. Drawing on interdisciplinary research in Australia, the United Kingdom and the United States, we explore how funeral directors operate as intermediaries for these digital products and services. We critically examine the popular framing of the funeral industry as a “conservative” business and examine how funeral directors actively mediate between their clients and the companies offering innovative products and services. This study provides an account of current developments in the funeral economy as well as a broader narrative about how funeral industry professionals have engaged with technology.
PURPOSE: Providing specialized palliative care support to elderly patients in rural areas can be challenging. The purpose of this study was to gain a preliminary understanding of the experience of using mobile web-based videoconferencing (WBVC) for conducting in-home palliative care consults with elderly rural patients with life-limiting illness.
METHODS: This was a descriptive, exploratory, proof-of-concept study with a convenience sample of 10 WBVC visits. A palliative care clinical nurse specialist (PC-CNS), in the home with the patient/family and home care nurse (HC-N), used a laptop computer with webcam and speakerphone to connect to a distant palliative care physician consultant (PC-MD) over a secure Internet connection. Data was collected using questionnaires, interviews, and focus groups.
RESULTS: Analysis of qualitative data revealed four themes: communication, logistics, technical issues, and trust. Participants reported they were comfortable discussing concerns by WBVC and felt it was an acceptable and convenient way to address needs. Audiovisual quality was not ideal but was adequate for communication. Use of WBVC improved access and saved time and travel. Fears were expressed about lack of security of information transmitted over the Internet.
CONCLUSIONS: Using WBVC for in-home palliative care consults could be an acceptable, effective, feasible, and efficient way to provide timely support to elderly rural patients and their families. Having a health care provider in the home during the WBVC is beneficial. WBVC visits have advantages over telephone calls, but limitations compared to in-person visits, suggesting they be an alternative but not replacement for in-person consultations.
Domestic Buddhist altars have long provided symbolically and materially rich media for venerating the dead in Japan. However, as Japanese household structures and funerary rites are unsettled in the contemporary era, Buddhist altars (butsudan) are rapidly being reinvented and digitalized. In this article, we describe the new technologies harnessed in butsudan production, the sensory experiences they offer, and their abilities to both reform and reinforce traditional networks of ancestral obligation. Despite promising death rituals that are more personal, secular, and affordable, the development of digitally enhanced material memorialization is still very much a work in progress in Japan.