Telehealth in palliative care is being described but not evaluated: a systematic review

Historically focussed on cancer care, there is a growing expectation that palliative care services should provide care to patients with any life limiting condition [1]. This, along with an ageing population with a growing burden of comorbidities has led to increasing strain on palliative care services. Several studies have shown the benefit of palliative care to patient quality of life [2, 3]. Despite this, work completed by Marie Curie highlights the inequalities in service provision for palliative care patients, with particular reference to patients with non-cancer diagnoses and out of hours care [1]. The provision of palliative care across rural communities should also be highlighted as a challenge for the specialist palliative care service [4].

Supporting patients with palliative care needs to access services and avoid hospital admission requires increasing support by community general and specialist palliative care services [5]. Several studies in the UK have indicated that the majority of patients wish to die at home [2], and a systematic review by Cochrane demonstrated that home-based end of life care increased the likelihood of dying at home [6].

Telehealth is a new and growing industry which comprises healthcare services, information technology and mobile technology. The World Health Organisation (WHO) state “Telehealth involves the use of telecommunications and virtual technology to deliver health care outside of traditional health-care facilities” [7]. The Health Resources and Service Administration expand on this description in their definition to include education; “the use of electronic information and telecommunications technologies to support and promote long-distance clinical health care, patient and professional health-related education, public health and health administration” [8].

The use of telehealth in a variety of chronic health conditions, such as heart failure and chronic obstructive pulmonary disease (COPD), has been studied [9, 10] and there is a growing body of research into its application in palliative medicine. Although there have been some large-scale notable uses of telehealth; for example, the use of electronic patient record systems in the UK [11], the importance of telehealth in providing quality healthcare has only recently become more widely accepted. Used to its full potential, telehealth technology could be particularly vital in improving access to healthcare over geographical distance and outside of normal working hours [12]. Telehealth has also been postulated as a solution to reduce acute hospital admissions which currently account for around 65% of hospital bed days in England [13].

The potential for telehealth to be utilised in the provision of palliative care services has already been identified in national publications. NHS Scotland identified ‘providing telehealth and telecare support’ as one of their actions as part of the ‘Living and Dying Well’ action plan [14] and the National Palliative Care and End of Life Care Partnership also identified the use of technology in their ‘ambitions’ for 2015–2020 [15]. In 2017, the UK government published its Digital Service Strategy which outline the ambitions to grow digital services across a variety of sectors [16]. This includes a service manual which explains how teams can build a good digital service. As a part of this work, the government also developed a Digital Service Standard [17]. This standard is a list of criteria to help create and run good digital services. The criteria include detailed information on why each element is important and what it means when designing and delivering a service. Some of the criteria include understanding user needs, making a service simple to use and protects user data. The digital service standard will be discussed further in the results section.

A review undertaken in the use of telehealth in palliative care in the UK was published in 2010 [18]. This paper examined the use of telehealth in palliative care settings in the UK between 1999 and 2009. The paper showed that telehealth was becoming increasingly accepted as useable by patients and healthcare professionals in this field; however there was an identified lack of clear evidence-based research to support the use of telehealth in palliative care in the UK [18].

Telehealth may provide a solution to meeting the growing demands of palliative care services across geographical regions with limited resources. Ready access to general and specialist palliative care services for patients with a variety of life-limiting conditions may prove beneficial in reducing the need for emergency services. This review will examine the current status of telehealth in palliative care in the UK and any evidence to suggest an effect on access to emergency or unscheduled care. In light of the recent UK government publications on digital services, the review will also examine to what extent current initiatives meet these standards. The issues described are not unique to the UK- studies in Australia [19, 20], the USA [21] and Europe [22] demonstrate a global interest in the potential of telehealth for meeting the needs of the palliative care population. Although this review focusses on UK studies, the results are undoubtedly transferable to an international audience.

The protocol for this systematic review was registered with PROSPERO and can be found at http://​www.​crd.​york.​ac.​uk/​PROSPERO/​display_​record.​php?​ID=​CRD42017080038.

The aim of this systematic review is to describe and evaluate the current use of telehealth technology in the provision of generalist and specialist palliative care in the UK. The authors examined the UK specifically in line with the 2010 review and also due to the unique way healthcare services- specifically, palliative care- are structured and funded via the National Health Service (NHS), meaning direct comparison with other countries would not be possible. The NHS is a government funded health and medical service which is free at the point of access to all UK residents [23]. Although a proportion of palliative care services are commissioned and funded by the NHS, much of palliative and end of life care is provided by hospices based in the voluntary sector [24]. To this end, the systematic review will answer the following question:

In addition to the primary objective of describing telehealth use in palliative care, the review will also address the evaluation of these services. The secondary questions to be answered are:

The authors used similar methods to those in the 2010 review paper in terms of selected electronic databases and grey literature searches. The search terms used for this review included those in the 2010 review however additional terms were added (adapted from previous Cochrane reviews [25, 26]) to maximise identification of suitable literature. Additionally, the authors opted not to include ‘United Kingdom’ and other synonyms in the search terms as it was felt this may result in missing relevant literature which referenced specific UK locations such as towns or regions.

Thematic synthesis was used to examine the results of the review [27].

A total of 30 articles met the inclusion criteria and were included in the synthesis. The search results are shown as a PRISMA flowchart in Fig. 1.

A table of the included studies [22‐49] can be found below [29, 30] (Table 2). Studies are grouped according to the predominant outcomes; quantitative, qualitative, protocols and mixed methods.

Similar to the review published by Kidd et al. in 2010 [18], this paper provides a useful overview and description of how telehealth initiatives are being used in palliative care in the UK. It is notable that despite a growth in the use of technology, the numbers of papers eligible for inclusion have not increased as expected. During the search, the authors noted a lack of conversion of abstracts to full publication; 12 interesting and potentially eligible abstracts were identified during the grey literature search which had not been converted to full publication. In keeping with these observations, Hanchanale et al. report that just over half of palliative care conference abstracts subsequently go on to full publication [59]. Although a Cochrane review in 2007 demonstrated a similar publication rate across all specialties [60], the article by Walshe in 2017 highlights the trend for observational rather than interventional research and a low publication rate of trials in palliative care [61]. This may account for the relatively low numbers of studies.

Despite this, we have found a number of papers which describe the varying uses of telehealth. Although telephone advice lines and the use of telehealth in providing patient or professional education continue to feature in this review, there was a notable increase in the number of home telemonitoring initiatives implemented compared to the 2010 review. This may be due to the improvement in these technologies. It was interesting to note that all of the home telemonitoring studies were undertaken in participants with specific diagnoses (for example, heart failure) rather than a general palliative care population. This may be appropriate given different diagnoses may result in different symptoms but may also be a barrier when thinking about the number and variety of telehealth applications needed to meet the demands of the palliative care population as a whole.

Where telehealth is described, the detail included in the paper was often insufficient for the authors to judge the initiative against the digital service standard. The majority of the papers which could be judged against this standard did not meet the criteria. This may reflect how recent this digital service standard was published (some papers included were published prior to the standard) but may also corroborate with the overall lack of robust study design noted across the review. Given this standard is now widely available, it may be that future telehealth initiatives align with the criteria more closely. It is worth noting that the criteria were adapted by the authors. For example, the requirement to ‘test with the minister’ was felt to be inappropriate for this review. The digital service standard was updated in July 2019 after completion of this review and the new criteria seem to reflect some of the challenges identified, including removal of the aforementioned point [62].

Kidd et al. [18] comment that telehealth is reported to advantage patient care by improving the patient and carer experience, however there is little known about the clinical benefits and feasibility of providing telehealth services. This review includes papers which comment on clinical benefits and reduced need for emergency care but there are limitations to these findings. Purdy et al. find a reduction in hospital admission, emergency department attendances and deaths in hospital, however their intervention was multi-faceted and they acknowledge that their ‘coordination centres’ which organise care and equipment for patients seemed to provide the most benefit, rather than the telehealth aspects. Although Dey et al. [44] report that admissions were avoided, the sample size for the study was small and it is unclear how the authors have reached this conclusion. Dierckx et al. [46] report a reduction in all-cause mortality, however this was a retrospective observational study where patients were offered telemonitoring rather than allocated. If patients opting to engage with telemonitoring are in general more engaged with healthcare, this may account for some of their findings. The study design in the paper by Middleton-Green [40] was insufficient to demonstrate that patients remaining in their usual place of residence was as a direct result of their telehealth initiative.

Although there is an increase in the use of home telemonitoring, and a growing appreciation for the use of telehealth in palliative care (as evidenced by the qualitative nature of some of these studies) there remains a lack of evaluation of telehealth interventions. Where evaluation was undertaken, it was difficult to attribute the results to telehealth as many studies implemented a multi-faceted intervention (for example, telephone advice line with a face-to-face support element). Most of the literature continues to be purely descriptive and without robust study design. Without this, it is not possible to clearly demonstrate a clinical benefit of telehealth in palliative care in this review.

This review demonstrates that a variety of UK palliative care telehealth initiatives continue to be described in the published literature. Since the 2010 review there particularly appears to have been an increase in the number of home telemonitoring interventions, perhaps because of an improvement in this technology. However, where sufficient detail of the telehealth initiative allowed review against a standard, the majority of interventions did not meet the requirements of a UK digital service. Despite the description of telehealth development and implementation, there remains a lack of robust study design and evaluation of these interventions meaning that clear conclusions around the benefit of telehealth in palliative care cannot be drawn; there is insufficient high quality evidence to comment on any influence on access to emergency or unscheduled care. Further work to evaluate the use of telehealth in palliative care, and to specifically examine its use in out of hours specialist palliative care provision is recommended.