End-of-Life care and e-Health

End-of-Life care and e-Health

These articles highlight how telehealth can be used in palliative care and in providing care at the end-of-life.

Bakitas MA, Elk R, Astin M, Ceronsky L, Clifford KN, Dionne-Odom JN, et al. Systematic Review of Palliative Care in the Rural Setting. Cancer Control. 2015 Oct;22(4):450-64. 
This systematic review investigated the access and dissemination of the advances taking place in the field of palliative care to patients living in rural areas as this has been identified as being limited. This study synthesized the current state of rural palliative care research and practice to identify important gaps for future research. Studies were conducted in the United States, Australia, Canada, Africa, Sweden, and India. Two randomized control trials were identified, both of which used telehealth approaches and had positive survival outcomes with 1 study demonstrating positive patient quality of life and depression outcomes. Approaches to telehealth, community-academic partnerships, and training rural health care professionals show promise, but more research is needed to determine best practices for providing palliative care to patients living in rural settings.


Bender JL, Yue RY, To MJ, Deacken L, Jadad AR. A lot of action, but not in the right direction: systematic review and content analysis of smartphone applications for the prevention, detection, and management of cancer. J Med Internet Res. Dec 2013; 15(12): e287. (free full text journal article)
Mobile phones have become nearly ubiquitous, offering a promising means to deliver health interventions. However, little is known about smartphone applications (apps) for cancer. The purpose of this study was to characterize the purpose and content of cancer-focused smartphone apps available for use by the general public and the evidence on their utility or effectiveness. This was complemented by a systematic review of literature from MEDLINE, Embase, and the Cochrane library to identify evaluations of cancer-related smartphone apps. The study found that there are hundreds of cancer-focused apps with the potential to enhance efforts to promote behaviour change, to monitor a host of symptoms and physiological indicators of disease, and to provide real-time supportive interventions, conveniently and at low cost. However, there is a lack of evidence on their utility, effectiveness and safety.

Capurro D, Ganzinger M, Perez-Lu J, Knaup P. Effectiveness of eHealth interventions and information needs in palliative care: a systematic literature review. J Med Internet Res. 2014 Mar 7;16(3):e72. (free full text journal article)
The aim of this study was to systematically identify studies and analyse the effectiveness of eHealth interventions in palliative care and the information needs of people involved in the palliative care process. A systematic literature search using PubMed, Embase, and LILACS according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines was conducted. The most common types of interventions and outcome assessments reported included improvement in quality of care, documentation effort, cost, and communications. The most frequently reported information need concerned pain management.

Chi NC, Demiris G. A systematic review of telehealth tools and interventions to support family caregivers. J Telemed Telecare. 2015 Jan;21(1):37-44. (free full text journal article)
A systematic review was conducted of studies employing telehealth interventions which focused on family caregivers' outcomes. Databases included Embase, CINHAL, Cochrane and PubMed were searched and the review found that there was 6 main categories of interventions were delivered via technology: education, consultation (including decision support), psychosocial/cognitive behavioural therapy (including problem solving training), social support, data collection and monitoring, and clinical care delivery. More than 95% of the studies reported significant improvements in the caregivers' outcomes and that caregivers were satisfied and comfortable with telehealth. The review showed that telehealth can positively affect chronic disease care, home and hospice care.

Chung J, Demiris G, Thompson HJ. Ethical Considerations Regarding the Use of Smart Home Technologies for Older Adults: An Integrative Review. Annu Rev Nurs Res. 2016;34:155-81. 
The purpose of this review is to provide an overview of ethical considerations and the evidence on these ethical issues based on an integrative literature review with regard to the utilization of smart home technologies by older adults and their family members. Through an integrative literature review of the scientific literature from indexed databases based on an established framework guiding this review is derived from previous work on ethical considerations related to telehealth use for older adults and smart homes for palliative care. This review found that when smart home technology is used appropriately, it has the potential to improve quality of life and maintain safety among older adults, ultimately supporting the desire of older adults for aging in place.


Davis MM, Freeman M, Kaye J, Vuckovic N, Buckley DI. A systematic review of clinician and staff views on the acceptability of incorporating remote monitoring technology into primary care. Telemed J E Health. 2014 May;20(5):428-38. (free full text journal article)
A systematic review was completed exploring the acceptability and feasibility of Remote Monitoring Technology (RMT) use in routine adult patient care, from the perspectives of primary care clinicians, administrators, and clinic staff. This review reported that for RMTs to be adopted in primary care, researchers and developers must ensure clinical relevance, support adequate infrastructure, streamline data transmission into electronic health record systems, attend to changing care patterns and professional roles, and clarify response protocols. This review also identified a critical need to engage end-users in the development and implementation of RMT.

Johnston B. UK telehealth initiatives in palliative care: A review. Int J Palliat Nurs. 2011 Jun;17(6):301-8.
This review paper explores the use of telehealth in relation to palliative care in the UK. Information technology (IT) developments are being harnessed throughout society, and there is growing interest in the ways in which they can be used to meet and support patients' health needs in the community. The aim of the literature review was to scope the information available from published and unpublished research, with particular reference to older people. The evidence suggests that, despite the challenges, there are numerous examples of good practice in relation to telehealth, palliative and end-of-life care, and older people. Developments in technology that have increased the capacity to improve care, through reaching greater numbers of people of all age groups, mean that telehealth has much to offer people living with and dying from advanced illness.

Jones JJ. Using skype to support palliative care surveillance. Nurs Older People. 2014 Feb;26(1):16-19. (freely accessible 749kb pdf)
The aim of this article is to demonstrate how a novel yet important tool can facilitate family involvement in person-centred care, despite geographical distance. The author presents a case study as an in-depth example of the use of Skype in the context of palliative care at home. Skype enhanced family surveillance and symptom management, augmented shared decision making, provided a space for virtual bedside vigil, and ultimately provided the rapport necessary for optimal end-of-life care.

Kidd L, Cayless S, Johnston B, Wengstrom Y. Telehealth in palliative care in the UK: A review of the evidence. J Telemed Telecare. 2010;16(7):394-402. Epub 2010 Sep 2.
A review of telehealth applications which were being used in palliative care settings in the UK was completed where electronic database searches (Medline, CINAHL, PsychInfo and Embase), searches of the grey literature and cited author searches were conducted. Telehealth was being used by a range of health professionals in oncology care settings that included specialist palliative care, hospices, primary care settings, nursing homes and hospitals as well as patients and carers. The most common applications were: out-of-hours telephone support, advice services for palliative care patients, carers and health professionals, videoconferencing for interactive case discussions, consultations and assessments, and training and education of palliative care and other health-care staff. The review suggests that current technology is usable and acceptable to patients and health professionals in palliative care settings. However, there are several challenges in integrating telehealth into routine practice.

Mitchell GK. End-of-life care for patients with cancer. Aust Family Phys. 2014 Aug;43(8):514-9. (free full text journal article)
The aim of this article is to provide an overview of end-of-life care for patients with cancer, including evidence supporting the involvement of general practitioners. Care planning is predicated on understanding the patient’s wishes about how care should be conducted and ensuring the plan conforms to these wishes. Not all GPs are willing to undertake palliative care, often because of a sense of inadequate knowledge, confidence and support. Therefore, starting to treat end-of-life patients early in a GP’s career is important, and making use of the considerable resources available will assist in building knowledge and confidence. Systematically caring for carers might be a way of introducing GPs to the care of patients with cancer at the end-of-life.

Nasi G, Cucciniello M, Guerrazzi C. The role of mobile technologies in health care processes: the case of cancer supportive care. J Med Internet Res, 2015 17(2): e26. (free full text journal article)
This paper aims to review existing studies on the actual role and use of mobile technology during the different stages of care processes, with particular reference to cancer supportive care. A review of literature was conducted with the aim of identifying studies related to the use of mHealth in cancer care and cancer supportive care. The review found that mHealth is mainly used for self-management activities carried out by patients with the main tools being used were mobile devices like mobile phones and tablets - remote monitoring devices also playing an important role. Text messaging technologies (short message service, SMS) have a minor role, with the exception of middle income countries where text messaging plays a major role. Telehealth technologies are still rarely used in cancer care processes. This under-utilization may depend on many issues, including the need for it to be embedded into broader information systems. If the purpose of introducing mHealth is to promote the adoption of integrated care models, using mHealth should not be limited to some activities or to some phases of the health care process.

Nwosu AC, Mason S. Palliative medicine and smartphones: an opportunity for innovation? BMJ Support Palliat Care. 2012 Mar;2(1):75-7.
The use of smartphones and their software applications (apps) provides health professionals with opportunities to integrate technology into clinical practice. Increasing numbers of work-related apps are available to health professionals, especially in certain specialties such as orthopaedics. However, so far the availability of apps specific to palliative medicine is limited. To review all smartphone apps targeted at health professionals within palliative medicine and available for the five most popular operating systems (iPhone, Blackberry, Android, Palm and Windows). After reviewing the available apps, the study found that there is a lack of palliative medicine specific resources for smartphones and no studies have been published which examine the potential benefits of mobile technology for learning, clinical practice and professional development. 

Ostherr K, Killoran P, Shegog R, Bruera E. Death in the Digital Age: A Systematic Review of Information and Communication Technologies in End-of-Life Care. J Palliat Med. 2016 Apr;19(4):408-20.
Summary: The objectives of this study was to identify, then compare the effectiveness of different the ICTs being used in EOL communication by conducting a systematic review of articles between 1997-2013. This review identified the need to adapt older, analog technologies to digital and many of the interventions discussed do not take full advantage of the affordances of mobile, connected health ICTs.

Ray RA, Fried O, Lindsay D. Palliative care professional education via video conference builds confidence to deliver palliative care in rural and remote locations. BMC Health Serv Res. 2014 Jun 19;14:272. (free full text journal article)
A program of multidisciplinary palliative care video conferences was presented to health practitioners across part of northern Australia in an effort to address the disadvantages of people living in rural and remote locations accessing palliative care. The provision of professional education about palliative care issues via multidisciplinary video conferencing increased confidence among rural health practitioners, by meeting their identified need for topic and context specific education. This technology also enhanced the networking opportunities between practitioners, providing an avenue of ongoing professional support necessary for maintaining the health workforce in rural and remote areas.

Rosser BA, Eccleston C. Smartphone applications for pain management. J Telemed Telecare. 2011;17(6):308-12. Epub 2011 Aug 15. 
Smartphone applications (or apps) are becoming increasingly popular. The lack of regulation or guidance for health-related apps means that the validity and reliability of their content is unknown. The review of available apps relating to the generic condition of pain through the five major smartphone platforms were searched and were included if they reported a focus on pain education, management or relief, and were not solely aimed at health-care professionals (HCPs). Despite an increasing number of apps being released, the frequency of HCP involvement is not increasing. Pain apps appear to be able to promise pain relief without any concern for the effectiveness of the product, or for possible adverse effects of product use. In a population often desperate for a solution to distressing and debilitating pain conditions, there is considerable risk of individuals being misled.

Stern A, Valaitis R, Weir R, Jadad AR. Use of home telehealth in palliative cancer care: A case study. J Telemed Telecare. 2012 Jul;18(5):297-300.
We conducted a mixed-methods case study to explore the perceptions of family caregivers and palliative cancer patients of home telehealth, and their experience with it. The intervention in the randomized controlled trial from which study participants were selected consisted of specialist nurses available 24 hours per day who communicated with patients and families using videophones, with optional remote monitoring. During the study there were 255 contacts, including videophone, telephone or face-to-face visits, between tele-nurses and families. Overall the patients, family caregivers and tele-nurses felt that home telehealth enabled family caregiving, citing increased access to care, and patient and family caregiver reassurance. Pain management was the most common reason for initiating contact with the nurse, followed by emotional support. Concerns included lack of integration of services, inappropriate timing of the intervention and technical problems.

Tasmanian Government Department of Health and Human Services Palliative Care / Grosvenor Management Consulting. An evaluation of the Living Well Dying Well pilot program and the Cradle Coast Connected Care Electronic Health Record system (3.52MB pdf). Final Report, 2 December 2014. (freely accessible online report)
The 4CEHR system was developed to pilot an electronic health record which would facilitate advance care planning. The 4CEHR system was piloted in conjunction with the LWDW project. Specifically, this system was designed to support the development and communication of advance care planning information between health care settings.

Taylor A, Morris G, Pech J, Rechter S, Carati C, Kidd, MR. Home Telehealth Video Conferencing: Perceptions and Performance. JMIR Mhealth Uhealth. 2015 Sep 17;3(3):e90. (free full text journal article)
The aims of this study are to identify which technical factors influence the quality of video conferencing in the home setting and to assess the impact of these factors on the clinical perceptions and acceptance of video conferencing for health care delivery into the home through the Flinders Telehealth in the Home trial (FTH trial) conducted in South Australia. An action research process developed several quantitative and qualitative procedures to investigate technology performance and users perceptions of the technology including measurements of signal power, data transmission throughput, objective assessment of user perception. The experimental field tests indicated that video conferencing audio and video quality was worse when using mobile data services compared with fiber to the home services and statistically significant associations were found between audio/video quality and patient comfort with the technology as well as the clinician ratings for effectiveness of telehealth.

Tieman JJ, Morgan DD, Swetenham K, To TH, Currow DC. Designing clinically valuable telehealth resources: processes to develop a community-based palliative care prototype. JMIR Res Protoc 2014; 3(3):e41.
This study examined the processes involved in developing a prototype telehealth intervention to support palliative care patients involved with a palliative care service living in the community.  The project activities to develop the prototype were specifically mapped against a conceptual model detailing  multidisciplinary project management, contextual inquiry, value specification, and design. The model provided a mechanism that facilitated “better” solutions in the development of the palliative care prototype by addressing the inherent but potentially unrecognized differences in values and beliefs of participants.

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 Nov 17;15:94
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 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.

Wallace LS, Dhingra LK.  A systematic review of smartphone applications for chronic pain available for download in the United States. J Opioid Manag. 2014 Jan-Feb;10(1):63-8.
Smartphone apps could be useful in aiding patients in self-monitoring and self-managing their chronic pain-related symptoms. The purpose of this study was to systematically review English-language pain-related Smartphone apps available for download in the United States. Of the 220 apps analysed, the cost for downloading each app ranged from US $0.00 to 89.99;the majority were ≤US $4.99. There was no evidence of HCP involvement in the development of the majority of apps (65.0%). Chronic, nonspecific pain was the focus of half (50.5%) of the apps, followed by back and/or neck pain (25.9%). Overall, most of the pain-related apps included within our review not only lacked evidence of HCP input regarding development but also contained few evidence-based pain management features.

Watanabe SM, Fairchild A, Pituskin E, Borgersen P, Hanson J, Fassbender K. Improving access to specialist multidisciplinary palliative care consultation for rural cancer patients by videoconferencing: Report of a pilot project. Support Care Cancer. 2013 Apr;21(4):1201-7.
Palliative care (PC) and palliative radiotherapy (RT) consultation are integral to the care of patients with advanced cancer. These services are not universally available in rural areas, and travel to urban centers to access them can be burdensome for patients and families. The objectives of our study were to assess the feasibility of using videoconferencing to provide specialist multidisciplinary PC and palliative RT consultation to cancer patients in rural areas and to explore symptom, cost, and satisfaction outcomes. The study found that the delivery of specialist multidisciplinary PC consultation by videoconferencing is feasible, may improve symptoms, results in cost savings to patients and families, and is satisfactory to users.

Zheng Y, Head BA, Schapmire TJ. A Systematic Review of Telehealth in Palliative Care: Caregiver Outcomes. Telemed J E Health. 2016 Apr;22(4):288-94. 
A systematic review was conducted to evaluate caregiver outcomes related to palliative telehealth interventions in multiple databases for articles published between January 2003 and January 2015 related to telehealth in palliative care. This systematic review suggests there is evidence of overall satisfaction in caregivers who undergo a telehealth intervention, but outcomes reported were often not substantial.

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Page updated 13 May 2017