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: 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.
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.
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 â€œgo to a memorable placeâ€ or â€œreturn home.â€ 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 â€œconservativeâ€ 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.
Documentation of code status and advance directives for end-of-life (EOL) care improves care and quality of life, decreases cost of care, and increases the likelihood of an experience desired by the patient and his/her family. However, the use of advance directives and code status remains low and only a few organizations maintain code status in electronic form. Members of the American Medical Informatics Association's Ethics Committee identified a need for a patient's EOL care wishes to be documented correctly and communicated easily through the electronic health record (EHR) using a minimum data set for the storage and exchange of code status information. After conducting an environmental scan that produced multiple resources, Ethics Committee members used multiple conference calls and a shared document to arrive at consensus on the proposed minimum data set. Ethics Committee members developed a minimum required data set with links to the HL7 C_CDA Advance Directives Module. Data categories include information on the organization obtaining the code status information, the patient, any supporting documentation, and finally the desired code status information including mandatory, optional, and conditional elements. The "minimum set of attributes" to exchange advance directive / code status data described in this manuscript enables communication of patient wishes across multiple providers and health care settings. The data elements described serve as a starting point for a dialog among informatics professionals, physicians experienced in EOL care, and EHR vendors, with the goal of developing standards for incorporating this functionality into the EHR systems.
The definition of death was clearer one hundred years ago than it is today. People were declared dead if diagnosed with permanent cessation of both cardio-circulatory function and respiratory function. But the definition has been muddled by the development of new technologies and interventions-first by cardiopulmonary resuscitation and ventilators, which were introduced in the mid-twentieth century, and now by extracorporeal membrane oxygenation, which creates the ability to keep oxygenated blood circulating, with or without a beating heart or functioning lungs. In Defining Death: The Case for Choice, Robert Veatch and I argue that the definition of death should focus on "what change in a human being is so fundamental that we can say the individual is no longer with us as a member of the human community bearing rights such as the right not to be killed." We assert that this decision is a normative issue about which different stakeholders may believe that different changes are fundamental, and we therefore propose that the optimal policy solution may be to allow stakeholders to choose their own definition within a reasonable range of options. There are three caveats that need to be highlighted regarding this approach.
BACKGROUND: Mobile health (mHealth) technology holds promise for promoting health education and reducing health disparities and inequalities in underserved populations. However, little research has been done to develop mHealth interventions for family caregivers of people with dementia, particularly those in rural Hispanic communities, who often serve as surrogate decision makers for their relatives with dementia.
OBJECTIVE: As part of a larger project to develop and test a novel, affordable, and easy-to-use mHealth intervention to deliver individually tailored materials in rural Hispanic communities, in this pilot study, we aimed to examine (1) characteristics of people with dementia and their family caregivers in rural Hispanic communities, (2) caregivers' preferences for types and amounts of health information and participation in surrogate decision making, and (3) caregivers' mobile device usage and their desire for receiving information via mobile devices.
METHODS: This was a cross-sectional survey. A convenience sample of 50 caregivers of people with dementia was recruited from rural health care facilities in Southwest Texas during 3 weeks of April 2017 to May 2017 via word-of-mouth and flyers posted at the facilities.
RESULTS: More women than men were in the patient group ( 21=17.2, P<.001) and in the caregiver group ( 21=22.2, P<.001). More patients were on Medicare and Medicaid; more caregivers had private insurance (P<.001 in all cases). Overall, 42% of patients did not have a power of attorney for their health care; 40% did not have a living will or advance directive. Caregivers were interested in receiving all types of information and participating in all types of decisions, although on subscales for diagnosis, treatment, laboratory tests, self-care, and complementary and alternative medicine, their levels of interest for decision-making participation were significantly lower than those for receiving information. On the psychosocial subscale, caregiversâ€™ desire was greater for surrogate decision-making participation than for information. Caregivers did not differ in their interests in information and participation in decision making on the health care provider subscale. All but 1 caregiver (98%) owned a mobile phone and 84% had a smartphone. Two-thirds wanted to receive at least a little dementia-related information via a smartphone or tablet. The amount of dementia-related information caregivers wanted to receive via a mobile device was significantly greater for women than for men (U=84.50, P=.029). Caregivers who owned a tablet were more likely to want to receive dementia-related information via a mobile device than those who did not own a tablet (U=152.0, P=.006).
CONCLUSIONS: Caregivers in rural Hispanic communities were interested in receiving a wide range of information as well as participating in making decisions for their relatives with dementia. There is much need for effective mHealth interventions that can provide information tailored to the needs and preferences of these caregivers.
Mobile devices frequently used in other specialties can find great utility in palliative care. For healthcare professionals, the use of mobile technology not only can bring additional resources to the care, but it can actually radically change the cancer remote care practices. The Brazilian National Cancer Institute (INCA) has developed the largest cancer home care program in Latin America, which currently benefits more than 500 patients. The purpose of this paper is to show the development of an ICT environment of mobile applications developed to support the palliative cancer care program at INCA.
OBJECTIVE: To explore the demographic factors and the level of knowledge related to information and communication technologies of potential users of a palliative care information system.
METHODS: The Task, User, Representation, Functionality (TURF) framework was applied to characterize potential users (patients and caregivers) of an information system for palliative care in a private clinic in Medellin, Colombia, through a survey.
RESULTS: We analyzed 35 patients and 39 caregivers. The majority were women, that lived in urban area and belonged to middle-income socioeconomic stratum. Caregivers, in contrast to patients, are common users of information and communication technologies.
CONCLUSION: An information system should focus on the needs of caregivers, and it would be targeted to subjects facing challenges related to technology adoption; information and communication technologies are interesting and important tools for the improvement of health team.
Family caregivers (FCs) are fundamental for quality of life (QoL) optimization and well-being of cancer patients, contributing to the quality of palliative care services. The present study aimed to evaluate the QoL of FCs caring for oncological patients admitted to the Palliative Care Service of the Portuguese Oncology Institute of Porto. It was also intended to identify multidimensional problems that could guide strategies to provide support to FCs. Two measurement instruments, translated and validated for the Portuguese population, were administered to FCs (n=150): World Health Organization Quality Life - WHOQOL-BREF and WHOQOL-SRPB questionnaires. The Platform for QoL Assessment in Oncology (OpQoL) was used for data collection. Most FCs were female (n=97, 64.7%), catholic (n=137; 91,3%), married (n =106; 70,7%), 7%), professionally active (n=147; 98,0%), having a daily care of less than 6 hours (n=88; 58,7%) and for less than 6 months (n = 87; 58,0%). The most frequent schooling years was between 8 and 11 (n =67; 44,7%) and the most common affective relationship with the patient was being son/daughter (n =63; 42,0%). FCs education and age influenced QoL results, with the worst impacts occurring in all dimensions evaluated in the age ranges 18-30 and 46-60 years. Women score worse in physical, psychological, social, and total domains of the WHOQOL-BREF. FCs from patients with 3 and 4 level on the ECOG scale have a greater negative overall and social impact. Worst results were observed in FCs who take care more than 6 hours/day. QoL systematic assessment is decisive for FCs QoL optimization in cancer palliative care. Technology support contributes to overcome technical, methodological and logistical constraints, allowing the use of QoL results on the shortest time. This study identifies FCs needs and signal affected domains – it provides guidance to the implementation of strategies that can optimize QoL.