Telemedicine Chapter 16: Telemedicine and Palliative Care

This chapter is part of Literature reviews carried out for the Heath Service Executive National Telehealth Steering Group April – July 2020

Systematic Reviews

Hancock, S et al (2019)[Systematic Review] Telehealth in Palliative Care Is Being Described but Not Evaluated: A Systematic Review[1]

Telehealth is growing and its application in palliative care is seen as a solution to pressures on palliative care services. A 2010 UK review reported growing awareness of telehealth in palliative care but a lack of evidencebased research to support its use. The primary aim of this review was to describe the current use of telehealth in palliative care in the UK and evaluate telehealth initiatives against a digital service standard. The secondary aim was to explore whether telehealth results in a reduction in emergency care access. The authors conclude that although there is growth of telehealth services, there remains a lack of evaluation and robust study design meaning conclusions regarding the clinical application of telehealth in palliative care cannot be drawn. There is insufficient evidence to appreciate any benefit of telehealth on access to emergency care. Future work is needed to evaluate the use of telehealth in palliative care and improve telehealth design in line with digital service standards.

Head, BA et al (2018)[Systematic Review] Telehealth in Palliative Care [2]

A systematic review was conducted to explore published quantitative and qualitative research describing patient-reported outcomes of palliative telehealth intervention studies. Multiple databases were searched for articles published between January 2006 and May 2016, which met study criteria. Methodological quality was assessed using Cochrane Collaboration’s tool for assessing risk of bias for quantitative articles. For studies reporting qualitative outcomes, a checklist was used to evaluate trustworthiness of the methodology. Of the 6 studies reporting quantitative outcomes, 3 studies were rated as having moderate study quality, and 3 studies were rated as having low study quality. Of the 6 studies reporting qualitative outcomes, 3 reported 5 different methods for ensuring trustworthiness, whereas 1 article reported 4 methods, 1 reported 3, and 1 article reported 2 methods. Studies were notably diverse in terms of patient population, technology used, outcomes measures, and methodology. Results across studies were also variable. Methodological factors were major limitations. Recruitment problems, participant attrition, and lack of standardized outcomes measures impacted outcome assessment. Overall, research support for positive patient outcomes in palliative telehealth interventions was weak. However, all studies but one found positive results to support the intervention.

Rogante, M et al (2016)[Systematic Review] Telemedicine in Palliative Care: A Review of Systematic Reviews[3]

An evaluation of the quality of systematic reviews on telemedicine applications in palliative care. The authors conclude that the results of this first attempt to appraise the evidence in the field of telemedicine applications in palliative care highlighted that there is still limited evidence related to this approach. Strengths and weaknesses that impact on the general quality of the reviews were identified and relevant points to be taken into account for future research were suggested.

Zhen, Y et al (2016)[Systematic Review] A Systematic Review of Telehealth in Palliative Care: Caregiver Outcomes[4]

Telehealth interventions have proven efficacy in healthcare, but little is known about the results of such interventions in palliative care. We conducted a systematic review to evaluate caregiver outcomes related to palliative telehealth interventions. This systematic review suggests there is evidence of overall satisfaction in caregivers who undergo a telehealth intervention, but outcomes reported were often not substantial. Methodological flaws and small sample sizes negatively affected study quality. More rigorous research to test and evaluate such palliative interventions is needed.

Jain, A et al (2015)[Systematic Review] Video Decision Aids to Assist With Advance Care Planning: A Systematic Review and Meta-Analysis[5]

The objective of this systematic review was to evaluate the impact of video decision aids on patients’ preferences regarding life-sustaining treatments. The authors conclude that video decision aids may improve some ACPrelated outcomes. Before recommending their use in clinical practice, more evidence is needed to confirm these findings and to evaluate the impact of video decision aids when integrated into patient care.

Randomised Controlled Trials

Dionne-Odom, JN et al (2020) [Randomised Controlled trial] Effects of a Telehealth Early Palliative Care Intervention for Family Caregivers of Persons With Advanced Heart Failure: The ENABLE CHF-PC Randomized Clinical Trial[6]

Family caregivers of persons with advanced heart failure perform numerous daily tasks to assist their relatives and are at high risk for distress and poor quality of life. The aim of this study was to determine the effect of a nurseled palliative care telehealth intervention Educate, Nurture, Advise, Before Life Ends Comprehensive Heart Failure for Patients and Caregivers (ENABLE CHF-PC)) on quality of life and mood of family caregivers of persons with New York Heart Association Class III/IV heart failure over 16 weeks. This 2- site randomized clinical trial of a telehealth intervention for family caregivers of patients with advanced heart failure, more than half of whom were African American and most of whom were not distressed at baseline, did not demonstrate clinically better quality of life, mood, or burden compared with usual care over 16 weeks. Future interventions should target distressed caregivers and assess caregiver effects on patient outcomes.

Gustafson, DH et al (2018) [Randomised Controlled Trial] Reducing Symptom Distress in Patients With Advanced Cancer Using an e-Alert System for Caregivers: Pooled Analysis of Two Randomized Clinical Trials[7]

The aim of this paper was to assess the effects on cancer patient symptom distress of an eHealth system that alerts clinicians to significant changes in the patient’s symptoms, as reported by a family caregiver. A pooled analysis from two randomized clinical trials compared outcomes at 12 months for two unblinded groups: a control group (Comprehensive Health Enhancement Support System [CHESS]-Only)that gave caregivers access to CHESS, an online support system, and an experimental group (CHESS+CR [Clinician Report]), which also had CHESS but with a CR that automatically alerted clinicians if symptoms exceeded a predetermined threshold of severity. Participants were dyads (n=235) of patients with advanced lung, breast, or prostate cancer and their respective family caregivers from 5 oncology clinics in the United States of America. The proportion of improved patient threshold symptoms was compared between groups using area-under-thecurve analysis and binomial proportion tests. The proportion of threshold symptoms out of all reported symptoms was also examined. This study suggests that an eHealth system designed for caregivers that alerts clinicians to worrisome changes in patient health status may lead to reduced patient distress.

Hoek, PD et al (2017) [Randomised Controlled Trial] The Effect of Weekly Specialist Palliative Care Teleconsultations in Patients With Advanced Cancer -A Randomized Clinical Trial[8]

Teleconsultation seems to be a promising intervention for providing palliative care to home-dwelling patients; however, its effect on clinically relevant outcome measures remains largely unexplored. Therefore, the purpose of this study was to determine whether weekly teleconsultations from a hospital-based specialist palliative care consultation team (SPCT) improved patient-experienced symptom burden compared to “care as usual”. Secondary objectives were to determine the effects of these teleconsultations on unmet palliative care needs, continuity of care, hospital admissions, satisfaction with teleconsultations, and the burden experienced by informal caregivers. Seventy-four home-dwelling patients diagnosed with advanced cancer were recruited from outpatient clinics of a tertiary university hospital and from regional home care organizations between May 2011 and January 2015. Participants were randomized to receive weekly, prescheduled teleconsultations with an SPCT-member [intervention group], or to receive “care as usual” [control group], for a period of 12 weeks. The primary outcome of this study was: patient-experienced symptom burden indicated by the following: 1. Total Distress Score, defined as the sum of all nine sub-scales of the Edmonton Symptom Assessment System; and 2. the Hospital Anxiety and Depression Scale. Mixed models were used to test for differences between the two groups. Adding weekly teleconsultations to usual palliative care leads to worse reported symptom scores among home-dwelling patients with advanced cancer. Possible explanations for these findings include excess attention on symptoms and potential suffering, the supply-driven care model for teleconsultations used in this trial, and the already high level of specialist palliative care provided to the control group in this study.

Miscellaneous

Carlton, Bet al(2020) [Comment] Telemedicine in the Time of Coronavirus[9]

COVID-19 has transformed our practice of palliative care and clinical medicine as we know it. Telemedicine has emerged as a critical technology to bring medical care to patients while attempting to reduce the transmission of COVID-19 among patients, families, and clinicians. It is also increasingly necessary to preserve scarce resources such as personal protective equipment. In this article, we share just-in-time tips to support palliative care clinicians and program leaders in providing the best care possible by telemedicine. These quick, practical tips cover telemedicine setup, patient considerations, and clinician considerations. Next steps include ensuring equitable access to affordable telemedicine technology for vulnerable populations through creative solutions and financing, and dedicated attention to telemedicine evaluation and quality improvement.

Dickman Portz, J et al(2020)“We’re Taking Something So Human and Trying to Digitize”: Provider Recommendations for mHealth in Palliative Care[10]

Background: Mobile health is a promising tool for improving health outcomes. However, the benefits of using mHealth in palliative care are under studied. This research explored provider perspectives regarding the utility of mHealth in palliative care. Results: Thematic analysis resulted in five provider recommendations regarding the utility and design of palliative care-specific mHealth, including:1.thoughtfulness to language, context, and delivery when assessing palliative care needs; 2. include tools for prognosis and advance care planning; 3.tailor health and quality-of-life goals; 4. emphasize supports for family and caregivers; and 5. consider technology abilities of older adults. Conclusions: Palliative care providers are enthusiastic about the use of mHealth to improve care coordination, facilitate communication, enhance symptom monitoring, and improve patient-family support. However, providers have reservations about mobile functionality and depersonalized assessment and care. Providers stress the utility of mHealth to facilitate palliative care rather than replace important multidisciplinary services

Guzman, D. (2020)[Retrospective Chart Review] Enhancing Palliative Care Patient Access to Psychological Counselling Through Outreach Telehealth Services[11]

Palliative care encompasses an interdisciplinary team, including mental health care professionals, to address psychological distress of cancer patients. An outreach counselling program via videoconferencing or telephone was implemented to patients receiving care in an outpatient palliative care clinic and to compare patients using this service to those who only received psychological counselling in our outpatient clinic. A retrospective chart review was carried out and the authors conclude that outreach telehealth counselling services enhance palliative care patient access to psychological counselling. These services represent an additional modality for providing continuous psychological care.

Humphreys, J et al (2020) [Comment] Rapid Implementation of Inpatient Telepalliative Medicine Consultations During COVID-19 Pandemic [12]

As coronavirus disease 2019 cases increase throughout the country and health care systems grapple with the need to decrease provider exposure and minimize personal protective equipment use while maintaining high-quality patient care, our specialty is called on to consider new methods of delivering inpatient palliative care (PC). Telepalliative medicine has been used to great effect in outpatient and home-based PC but has had fewer applications in the inpatient setting. As we plan for decreased provider availability because of quarantine and redeployment and seek to reach increasingly isolated hospitalized patients in the face of coronavirus disease 2019, the need for telepalliative medicine in the inpatient setting is now clear. We describe our rapid and ongoing implementation of telepalliative medicine consultation for our inpatient PC teams and discuss lessons learned and recommendations for programs considering similar care models.

Slavin-Stewart, C et al (2020) [Feasibility Study] A Feasibility Study of Home-Based Palliative Care Telemedicine in Rural Nova Scotia[13]

This study evaluated the use of the FaceTime application on an Apple iPad to improve timely access to physician consultation for home-based palliative care patients living in rural Nova Scotia. Patients enrolled with the Hants Community Palliative Care Program who consented to participate (n = 15) received regular home-based visits from a palliative care nurse who used the FaceTime application to connect with the palliative care physician in Halifax. Participants were then asked to complete a questionnaire evaluating their experience. Results indicated that using FaceTime through cellular data networks is feasible in rural areas of Nova Scotia. All participants reported that both the audio and visual quality allowed them to communicate easily with the doctor, and no consultations were terminated due to network instability. Patients also found the FaceTime encounter highly acceptable with 86% reporting they were satisfied or very satisfied; 100% stated that their medical concerns were addressed and 100% were willing to use FaceTime again. The results add to the limited literature exploring the application of telehealth in palliative care and demonstrating the utility of low-cost commonly used technology to improve access to palliative care in underserviced areas.

Calton, B. et al (2019)[Review] Top Ten Tips Palliative Care Clinicians Should Know About Telepalliative Care [14]

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-andmortar 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 wellbeing, 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.

Doolittle, GC et al (2019) [Case Study] TeleHospice: A Community-Engaged Model for Utilizing Mobile Tablets to Enhance Rural Hospice Care [15]

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. 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. 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.

Funderskov, KF et al (2019)Telemedicine in Specialised Palliative Care: Healthcare Professionals’ and Their Perspectives on Video consultationsA Qualitative Study [16]

The aim of this study was to explore the advantages and disadvantages of using video consultations, as experienced by specialised palliative care healthcare professionals, who are involved in palliative care at home. The study carried out in Denmark involved eight participants (n = 8); five community nurses; and three specialised palliative care team members-a head physician, a physiotherapist and a nurse-participated in the study. The healthcare professionals’ knowledge was based on n = 82 video consultations with 11 patients. The range of video consultations was 3-18 per patient. The use of tablets in video consultations facilitated direct palliative care and led the community nurses and the specialised palliative care team nurse to co-operate. Potential barriers against using video consultations are the discussions about personal, and private issues regarding the illness, while family members are present. The authors conclusions are that video consultations in specialised palliative home care are feasible, and the technology can facilitate multidisciplinary participation and co-operation among healthcare professionals. The continuous use of video consultations over time may increase the quality of specialised palliative home care.

Funderskov, KF et al (2019)Experiences With Video Consultations in Specialized Palliative Home-Care: Qualitative Study ofPatient and Relative Perspectives [17]

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. 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. 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. The authors conclude that Video consultations in SPC for home-based patients are feasible and facilitate a strengthened involvement and communication between patients, relatives, and SPC team members.

Middlton-Green, L et al (2019)‘A Friend in the Corner’: Supporting People at Home in the Last Year of Life via Telephone and Video Consultation-An Evaluation[18]

An evaluation of a 24/7, nurse-led telephone and video-consultation support service for patients thought to be in the last year of life in Bradford, Airedale, Wharfedale and Craven. Data on the time and nature of all calls between 1 April 2014 and 30 March 2015 were obtained from the patient Electronic Records. Interviews with 13 participants captured patients and carers perspectives. The authors conclude that a nurse-led, 24/7 telephone and video consultation service can provide valuable support for patients identified to be in the last year of life and for their carers. The line enabled them to feel supported and remain in their place of residence, hence reducing the pressure for avoidable hospital admissions and use of other services. Providing this service may encourage healthcare professionals to identify more patients approaching the last year of life, widening support offered to this group of patients beyond those known to specialist palliative care services.

Read Paul, L et al (2019) Web-Based Videoconferencing for Rural
Palliative Care Consultation With Elderly Patients at Home[19]

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. 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. 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.

Schoppee, TM et al (2019) Patients and Caregivers Rate the PAINReportIt Wireless Internet-Enabled Tablet as a Method for Reporting Pain During End-of-Life Cancer Care [20]

In several studies, investigators have successfully used an Internet-enabled PAINReportIt tablet to allow patients to report their pain to clinicians in realtime, but it is unknown how acceptable this technology is to patients and caregivers when used in their homes. The aims of this study were to examine computer use acceptability scores of patients with end-stage cancer in hospice and their caregivers and to compare the scores for differences by age, gender, race, and computer use experience. Immediately after using the tablet, 234 hospice patients and 231 caregivers independently completed the Computer Acceptability Scale. This technology was highly acceptable to patients and caregivers for reporting pain in real time to their hospice nurses. Findings provide encouraging results that are worthy of serious consideration for patients who are in end stages of illness, including older persons and those with minimal computer experience. Increasing availability of technology can provide innovative methods for improving care provided to patients facing significant cancer-related pain even at the end of life.

Tasneem, S et al (2019) Telemedicine Video Visits for Patients Receiving Palliative Care: A Qualitative Study[21]

In this needs assessment, gathered patient perceptions on how telemedicine video visits might influence their care. Patients in this study (n = 13) were all diagnosed with end-stage cancer and were receiving palliative care at an urban academic medical center. Interview themes addressed: 1. impact on patient’s health management; 2. user experience; 3. technical issues; and 4. cost and time. Ultimately, despite concerns over truncated physical exams and prescription limits, the majority of patients favored having the opportunity for telemedicine video visits, felt that the doctor-patient relationship would not suffer, had confidence in their or their surrogate’s technical abilities to navigate the video visit, had privacy concerns on par with other technologies, had few cost concerns, and believed a video alternative to an in-person visit might increase access, save time as well as increase comfort and safety by avoiding a trip to the office. These results suggest potential for acceptance of video-based telemedicine by an urban population of oncology patients receiving palliative care.

Vitacca, M et al (2019) [Feasibility Study] Tele-Assisted Palliative Homecare for Advanced Chronic Obstructive Pulmonary Disease: A Feasibility Study[22]

Despite real needs, very few chronic obstructive pulmonary disease (COPD) patients with life-limiting disease receive a well-organized support for palliative care (PC). To test the feasibility of, and patient satisfaction with, an advanced care plan for severe COPD patients followed by tele-assistance at home for six months that focused on monitoring patient’s palliative topics through a dedicated checklist. Ten hospitalized patients with severe COPD [<1-year life expectancy] received a 60 minutes PC talk by a specialist to define an advanced care plan in the case of very severe respiratory insufficiency, based on three options: 1. endotracheal intubation (EI); 2. noninvasive ventilation; or 3. no mechanical aid, oxygen and drugs. After the talk, patients expressed their personal choice. Following discharge home, patients received structured monthly telephone monitoring from specialized tutor nurses for six months on palliative topics. Patient’s anxiety before and after talk, depression, quality of life, specialist’s quality of communication, and customer satisfaction were evaluated. Tele-assisted PC is feasible and well accepted. According to these observations, a suitable supportive program can be the goal of a future study.

Bonsignore, L et al (2018) [Feasibility Study] Evaluating the Feasibility and Acceptability of a Telehealth Program in a Rural Palliative Care Population: TapCloud for Palliative Care[23]

The impact of telehealth and remote patient monitoring has not been well established in palliative care populations in rural communities. The objectives of this study were to:1. describe a telehealth palliative care program using the TapCloud remote patient monitoring application and videoconferencing; 2. evaluate the feasibility, usability, and acceptability of a telehealth system in palliative care; and 3. use a quality data assessment collection tool in addition to TapCloud ratings of symptom burden and hospice transitions. A mixed-methods approach was used to assess feasibility, usability, and acceptability. Quantitative assessments included patient symptom burden and improvement, hospice transitions, and advanced directives. Qualitative semistructured interviews on a subpopulation of telehealth patients, caregivers, and providers were performed to learn about their experiences using TapCloud. The authors describe a telehealth palliative care program and demonstrate acceptability, feasibility, and usability as well as describe symptom outcomes and hospice transitions.

Phongtankeul, V et al (2018) Mobile Health Technology Is Here-But Are Hospice Informal Caregivers Receptive?[24]

In home hospice, informal caregivers play an essential role in attending to the day-to-day needs of their terminally ill loved ones. Using mHealth apps by caregivers in this setting could potentially improve the support provided to both patients and caregivers at the end of life (EoL). The objectives of this study was to explore informal caregivers’ receptivity and concerns in using mHealth apps along with app features, caregivers perceived to be most useful in home hospice care. Eighty semistructured phone interviews were conducted with informal caregivers who received care from a nonprofit hospice organization. Study data were analyzed using content analysis, coding for themes of receptivity and interest. A substantial majority of informal caregivers voiced receptivity to using mHealth apps and expressed interest in features that enhance communication and provide information to improve patient care. Although more research is needed to examine how to incorporate this technology into existing home hospice care, our study suggests that informal caregivers are likely to use this technology they feel will help enhance home-based EoL care delivery.

Phongtankeul, V et al (2018) [Comment] Mobile Health Technology and Home Hospice Care: Promise and Pitfalls[25]

With the increasing use of mobile devices in our everyday lives, people have the ability to communicate and share information faster than ever before. This has led to the development of promising applications aimed at improving health and healthcare delivery for those with limited access. Hospice care, which is commonly provided at home, may particularly benefit from the use of this technology platform. This commentary outlines several potential benefits and pitfalls of incorporating mobile health applications into existing home hospice care while highlighting some of the relevant telemedicine work being done in the palliative and End-of-Life care fields.

Pinto, S et al (2017)[Literature Review] e-Health in Palliative Care: Review of Literature, Google Play and App Store[26]

Literature review to analyse the use of e-Health technologies and mobile apps in palliative care (PC). Twenty-five papers and forty mobile apps were analysed. Teleconsultation is the principal e-Health technology. Mobile apps focus on communication, drugs, tools/clinical guidelines, hospice, symptom management and PC information. e-Health is an emergent topic in PC. Teleconsultation enhances communication among patients, families and PC teams, reinforces partnership and decreases the burden on families and use of the emergency services.

Taylor, S et al (2017) Identifying Professionals’ Needs in Integrating Electronic Pain Monitoring in Community Palliative Care Services: An Interview Study[27]

The aim of this study was to inform the development and implementation strategy of an electronic pain monitoring system, PainCheck, by understanding palliative care professionals’ needs when integrating PainCheck into routine clinical practice. Health professionals have reservations about how PainCheck would work in practice. For optimal use, PainCheck needs embedding within existing electronic health records. Electronic pain monitoring systems have the potential to enable professionals to support patients’ pain management more effectively but only when barriers to implementation are appropriately identified and addressed.

Worster, B, Swartz, K (2017) [Review] Telemedicine and Palliative Care: An Increasing Role in Supportive Oncology[28]

This review looks at the use of telemedicine to expand access to palliative care as well as provide better care for patients and families where travel is difficult, if not impossible. When telemedicine has been used, often in Europe, for palliative care, the results show improvements in symptom management, comfort with care as well as patient and family satisfaction. One barrier to use of telemedicine is the concerns with technology and technology-related complications in population that is often elderly, frail and not always comfortable with non-face-to-face physician care. There remain significant opportunities to explore this intersection of supportive care and telemedicine.

Collier, A et al (2016) Implementation of a Pilot Telehealth Programme in Community Palliative Care: A Qualitative Study of Clinicians’ Perspectives[29]

The objectives of the study were to explore clinicians’ perspectives on and experiences of the utilisation of a pilot telehealth model and its integration into a specialist community palliative care programme. The study was conducted in a metropolitan specialist palliative care service in South Australia. Participants (n = 10) were clinicians involved in the delivery of community specialist palliative care and the piloting of a telehealth programme. Implementation of a pilot telehealth programme in a specialist palliative community team needs to involve clinical staff in service redesign from the outset. Reliable IT infrastructure and technical support is critical for telehealth models to be effective and will aid uptake.

Tieman, JL et al (2016)[Prospective Cohort Study]Using Telehealth to Support End of Life Care in the Community: A Feasibility Study [30]

Telehealth is being used increasingly in providing care to patients in the community setting. Telehealth enhanced service delivery could offer new ways of managing load and care prioritisation for palliative care patients living in the community. The study assesses the feasibility of a telehealthbased model of service provision for community based palliative care patients, carers and clinicians. This study was a prospective cohort study of a telehealth-based intervention for community based patients of a specialist palliative care service living in Southern Adelaide, South Australia. Participants were 43 community living patients enrolled in the Southern Adelaide Palliative Service. To be eligible patients needed to be over 18 years and have an Australian modified Karnofksy Performance Score > 40. Exclusion criteria included a demonstrated inability to manage the hardware or technology (unless living with a carer who could manage the technology) or non-English speaking without a suitable carer/proxy. Participants received video-based conferences between service staff and the patient/carer; virtual case conferences with the patient/carer, service staff and patient’s general practitioner (GP); self-report assessment tools for patient and carer; and remote activity monitoring. The trial showed that patients and carers could manage the technology and provide data that would otherwise not have been available to the palliative care service.

Van Gurp, J et al (2016) Teleconsultation for Integrated Palliative Care at Home: A Qualitative Study[31]

Interprofessional consultation contributes to symptom control for home-based palliative care patients and improves advance care planning. Distance and travel time, however, complicate the integration of primary care and specialist palliative care. Expert online audiovisual teleconsultations could be a method for integrating palliative care services. This study aims to describe:1. whether and how teleconsultation supports the integration of primary care, specialist palliative care, and patient perspectives and services; and 2. how patients and (in)formal caregivers experience collaboration in a teleconsultation approach. Specialist palliative care team teleconsultation with home-based patients leads to collaboration between primary care physicians and hospital-based palliative care specialists. Due to cultural reasons, most collaboration was of a multidisciplinary character, strongly relying on organized backstage work. Interdisciplinary teleconsultations with real-time contact between patient and both professionals were less common but stimulated patient-centered care dialogues.

Hennemann-Krause, L et al (2015) The Assessment of Telemedicine to Support Outpatient Palliative Care in Advanced Cancer[32]

This study examined telemedicine as a form of home and additional support for traditional outpatient care as a way to remotely monitor and manage the symptoms of patients with advanced cancer. In total, 12 patients were monitored through monthly consultations with a multidisciplinary healthcare team and weekly web conferences. To evaluate and treat pain and other symptoms, the Edmonton Symptom Assessment System (ESAS) was applied during all remote or in-person interviews. Telemedicine allowed greater access to the healthcare system, reduced the need to employ emergency services, improved assessment/control of symptoms, and provided greater orientation and confidence in the care given by family members through early and proactive interventions. Web conferencing proved to be a good adjuvant to home monitoring of symptoms, complementing in-person assistance.

Van Gurp, J et al (2015) How Outpatient Palliative Care Teleconsultation Facilitates Empathic Patient-Professional Relationships: A Qualitative Study[33]

The problems and needs of advanced cancer patients and proxies normally increase as the disease progresses. Home-based advanced cancer patients and their proxies benefit from collaborations between primary care physicians and hospital-based palliative care specialists when confronted with complex problems in the last phase of life. Telemedicine might facilitate direct, patient-centered communication between patients and proxies, primary care physicians, and specialist palliative care teams (SPCTs). This study focuses on the impact of teleconsultation technologies on the relationships between home-based palliative care patients and hospitalbased palliative care specialists. This work consists of a qualitative study among patients, family members, and caregivers that utilizes long-term direct observations, semi-structured interviews, and open interviews following the observations. Teleconsultation fits the practice of home-based palliative care. Teleconsultation can, if well applied, facilitate computermediated but empathic patient-palliative care specialist relationships, which enable professional care attuned to the patient’s context as well as patient involvement. This article proposes a teleconsultation implementation guide for optimal use of teleconsultation in daily palliative care practice.


[1] Hancock S, Preston N, Jones H, Gadoud A. Telehealth in palliative care is being described but not evaluated: a systematic
review.BMC Palliat Care. 2019;181.:114. Published 2019 Dec 13. doi:10.1186/s12904-019-0495-5 [Accessed 1 May 2020] [2] Head BA, Schapmire TJ, Yongqiang Zheng. Telehealth in Palliative Care.JournalofHospiceandPalliativeNursing.
2017;192.:130-139. doi:10.1097/NJH.0000000000000319. [Accessed 1 May 2020] [3] Rogante M, Giacomozzi C, Grigioni M, Kairy D. Telemedicine in palliative care: a review of systematic reviews.Ann Ist Super Sanita. 2016;523.:434‐442. doi:10.4415/ANN_16_03_16 [Accessed 1 May 2020] [4] Zheng Y, Head BA, Schapmire TJ. A Systematic Review of Telehealth in Palliative Care: Caregiver Outcomes.Telemed J E Health. 2016;224.:288‐294. doi:10.1089/tmj.2015.0090 [Accessed 1 May 2020] [5] Jain A, Corriveau S, Quinn K, Gardhouse A, Vegas DB, You JJ. Video decision aids to assist with advance care planning: a systematic review and meta-analysis.BMJ Open. 2015;56.:e007491. Published 2015 Jun 24. doi:10.1136/bmjopen-2014-007491 [Accessed 1 May 2020] [6] Dionne-Odom JN, Ejem DB, Wells R et al Effects of a Telehealth Early Palliative Care Intervention for Family Caregivers of Persons With Advanced Heart Failure: The ENABLE CHF-PC Randomized Clinical Trial.JAMA Netw Open. 2020;34.:e202583. Published 2020 Apr 1. doi:10.1001/jamanetworkopen.2020.2583 [Accessed 1 May 2020] [7] Gustafson DH, DuBenske LL, Atwood AK et al Reducing Symptom Distress in Patients With Advanced Cancer Using an e-Alert System for Caregivers: Pooled Analysis of Two Randomized Clinical Trials.J Med Internet Res. 2017;19(11):e354. doi:10.2196/jmir.7466 [Accessed 1 May 2020] [8] Hoek PD, Schers HJ, Bronkhorst EM, Vissers KCP, Hasselaar JGJ. The effect of weekly specialist palliative care teleconsultations in patients with advanced cancer -a randomized clinical trial.BMC Med. 2017;151.:119. Published 2017 Jun 19. doi:10.1186/s12916-017-0866-9 [Accessed 1 May 2020] [9] Calton B, Abedini N, Fratkin M. Telemedicine in the Time of Coronavirus [published online ahead of print, 2020 Mar 31].J Pain Symptom Manage. 2020;S0885-3924(20)30170-6. doi:10.1016/j.jpainsymman.2020.03.019 [Accessed 1 May 2020] [10] Dickman Portz J, Ford K, Bekelman DB et al “We’re Taking Something So Humanand Trying to Digitize”: Provider Recommendations for mHealth in Palliative Care.J Palliat Med. 2020;232.:240‐247. doi:10.1089/jpm.2019.0216 [Accessed 1 May 2020] [11] Guzman D, Ann-Yi S, Bruera E et al Enhancing palliative care patient access to psychological counseling through outreach telehealth services. Psychooncology. 2020;291.:132‐138. doi:10.1002/pon.5270 [Accessed 1 May 2020] [12] Humphreys J, Schoenherr L, Elia G et al Rapid Implementation of Inpatient Telepalliative Medicine Consultations During COVID-19 Pandemic [published online ahead of print, 2020 Apr 10].J Pain Symptom Manage. 2020;S0885-3924(20)30195-0. doi:10.1016/j.jpainsymman.2020.04.001 [Accessed 1 May 2020] [13] Slavin-Stewart C, Phillips A, Horton R. A Feasibility Study of Home-Based Palliative Care Telemedicine in Rural Nova Scotia.J Palliat Med. 2020;234.:548‐551. doi:10.1089/jpm.2019.0173 [Accessed 1 May 2020] [14] Calton BA, Rabow MW, Branagan L et al Top Ten Tips Palliative Care Clinicians Should Know About Telepalliative Care.J Palliat Med. 2019;228.:981‐985. doi:10.1089/jpm.2019.0278 [Accessed 1 May 2020] [15] Doolittle GC, Nelson EL, Spaulding AO et al TeleHospice: A Community-Engaged Model for Utilizing Mobile Tablets to Enhance Rural Hospice Care.Am J Hosp Palliat Care. 2019;36(9):795‐800. doi:10.1177/1049909119829458 [Accessed 1 May 2020] [16] Funderskov KF, Boe Danbjørg D, Jess M, Munk L, Olsen Zwisler AD, Dieperink KB. Telemedicine in specialised palliative care: Healthcare professionals’ and their perspectives on video consultations-A qualitative study.J Clin Nurs. 2019;28(21-22):3966‐3976.doi:10.1111/jocn.15004 [Accessed 1 May 2019] [17] Funderskov KF, Raunkiær M, Danbjørg DB et al Experiences With Video Consultations in Specialized Palliative Home-Care: Qualitative Study of Patient andRelative Perspectives.J Med Internet Res. 2019;213.:e10208. Published 2019 Mar 21. doi:10.2196/10208 [Accessed 1 May 2020] [18] Middleton-Green L, Gadoud A, Norris B et al ‘A Friend in the Corner’: supporting people at home in the last year of life via telephone and video consultation-an evaluation.BMJ Support Palliat Care. 2019;94.:e26. doi:10.1136/bmjspcare-2015-001016 [Accessed 1 May 2020] [19] Read Paul L, Salmon C, Sinnarajah A, Spice R. web-based videoconferencing for rural palliative care consultation with elderly patients at home.Support Care Cancer. 2019;27(9):3321‐3330. doi:10.1007/s00520-018-4580-8 [Accessed 1 May 2020] [20] Schoppee TM, Dyal BW, Scarton L et al Patients and Caregivers Rate the PAINReportIt Wireless Internet-Enabled Tablet as a Method for Reporting Pain During End-of-Life Cancer Care [published online ahead of print, 2019 Sep 27].Cancer Nurs. 2019;10.1097/NCC.0000000000000743. doi:10.1097/NCC.0000000000000743 [Accessed 1 May 2020] [21] Tasneem S, Kim A, Bagheri A, Lebret J. Telemedicine Video Visits for patients receiving palliative care: A qualitative study.Am J Hosp Palliat Care. 2019;36(9):789‐794. doi:10.1177/1049909119846843 [Accessed 1 May 2020] [22] Vitacca M, Comini L, Tabaglio E, Platto B, Gazzi L. Tele-Assisted Palliative Homecare for Advanced Chronic Obstructive Pulmonary Disease: A Feasibility Study.J Palliat Med. 2019;222.:173‐178. doi:10.1089/jpm.2018.0321 [Accessed 1 May 2020] [23] Bonsignore L, Bloom N, Steinhauser K et al Evaluating the Feasibility and Acceptability of a Telehealth Program in a Rural Palliative Care Population: TapCloud for Palliative Care.J Pain Symptom Manage. 2018;561.:7‐14. doi:10.1016/j.jpainsymman.2018.03.013 [Accessed 1 May 2020] [24] Phongtankuel V, Shalev A, Adelman RD et al Mobile Health TechnologyIs Here-But Are Hospice Informal Caregivers Receptive?.Am J Hosp Palliat Care. 2018;35(12):1547‐1552. doi:10.1177/1049909118779018 [Accessed 1 May 2020] [25] Phongtankuel V, Adelman RD, Reid MC. Mobile health technology and home hospice care: promise and pitfalls.Prog Palliat Care. 2018;263.:137‐141. doi:10.1080/09699260.2018.1467109 [Accessed 1 May 2020] [26] Pinto S, Caldeira S, Martins JC. e-Health in palliative care: review of literature, Google Play and App Store.Int J Palliat Nurs. 2017;238.:394‐401. doi:10.12968/ijpn.2017.23.8.394 [Accessed 1 May 2020] [27] Taylor S, Allsop MJ, Bekker HL, Bennett MI, Bewick BM. Identifying professionals’ needs in integrating electronic pain monitoring in community palliative care services: An interview study.Palliat Med. 2017;317.:661‐670. doi:10.1177/0269216316677470 [Accessed 1 May 2020] [28] Worster B, Swartz K. Telemedicine and Palliative Care: an Increasing Role in Supportive Oncology.Curr Oncol Rep. 2017;196.:37. doi:10.1007/s11912-017-0600-y [Accessed 1 May 2020] [29] Collier A, Morgan DD, Swetenham K, To TH, Currow DC, Tieman JJ. Implementation of a pilot telehealth programme in community palliative care: A qualitative study of clinicians’ perspectives.Palliat Med. 2016;304.:409‐417. doi:10.1177/0269216315600113 [Accessed 1 May 2020] [30] Tieman JJ, Swetenham K, Morgan DD, To TH, Currow DC. Using telehealth to support end of life care in the community: a feasibility study.BMC Palliat Care. 2016;151.:94. Published 2016 Nov 17. doi:10.1186/s12904-016-0167-7 [Accessed 1 May2020] [31] van Gurp J, van Selm M, van Leeuwen E, Vissers K, Hasselaar J. Teleconsultation for integrated palliative care at home: A qualitative study.Palliat Med. 2016;303.:257‐269. doi:10.1177/0269216315598068 [Accessed 1 May 2020] [32] Hennemann-Krause L, Lopes AJ, Araújo JA, Petersen EM, Nunes RA. The assessment of telemedicine to support outpatient palliative care in advanced cancer.Palliat Support Care. 2015;134.:1025‐1030. doi:10.1017/S147895151400100X [Accessed 1 May 2020] [33] van Gurp J, van Selm M, Vissers K, van Leeuwen E, Hasselaar J. How outpatient palliative care teleconsultation facilitates empathic patient-professional relationships: a qualitative study.PLoS One. 2015;104.:e0124387. Published 2015 Apr 22. doi:10.1371/journal.pone.0124387 [Accessed 1 May 2020]