Virtual care in end of life and palliative care: A rapid evidence check

Abstract

The purpose of this rapid evidence check was to identify virtual care modalities that are safe and effective in the delivery of end of life and palliative care. Thirty-three peer reviewed articles which were either review articles or interventional/evaluative studies presenting comparative data were identified through PubMed, Google, and Google Scholar searches. Extracted data was synthesized narratively and outcomes were categorised separately for patients, healthcare providers, caregivers and health system. Included studies reported on a wide range of virtual care modalities, including video consultation, mobile apps, videos, websites, telephone support, email and alert messages. Generally, studies reported similar or favourable quality of life outcomes to face-to-face palliative care, especially when virtual care was used as a supplement rather than a substitute for face-to-face care. Positive attitudes for perceived usefulness and helpfulness were reported by patients, caregivers and healthcare providers. Challenges identified related to technology limitations, trust, ethical concerns, administrative burden and evidence gaps. Overall, most studies found virtual care modalities to be safe and effective in end of life and palliative care with no detrimental adverse outcomes, when used as a supplement to face-to-face care.

Keywords

Telehealth virtual care end of life palliative care rapid review

Introduction

Virtual care, also known as telehealth, refers to the use of information and communication technologies either synchronously or asynchronously in facilitating patient-provider interactions in relation to diagnosis, assessment, monitoring and management.¹ While the use of virtual care has been steadily experimented and implemented in the past decades, the COVID-19 pandemic has rapidly necessitated and accelerated the adoption of it in healthcare settings.^1–3 This includes an expansion of virtual care in end of life and palliative care both in Australia and beyond. As with the larger trend, virtual care in end of life and palliative care has been increasingly recognised in policy and practice for its potential in helping to meet the growing demand for services, especially in geographically rural and resource limited areas,⁴ and during an ongoing pandemic.⁵

In New South Wales, Australia, in 2019, the Ministry of Health has identified telehealth as a key enabler to implementing the NSW End of Life and Palliative Care Framework 2019–24.⁶ However, there has been variation in the extent to which healthcare providers have adopted virtual care modalities into standard delivery of end of life and palliative care in NSW.⁶ There is inequitable access to end of life and palliative care for people living in regional, rural and remote areas due to workforce limitations in the context of increasing service demands.^7,8 While evidence in relation to provision of virtual care in end of life and palliative care within the context of COVID-19 is still emerging, the pandemic has certainly amplified the need for improved provision, access and utilisation of virtual care.

This rapid evidence check of virtual care in end of life and palliative care was conducted by the NSW Agency for Clinical Innovation's (ACI) Evidence Generation and Dissemination and Virtual Care (Palliative Care) Teams in 2021. This evidence check was carried out as part of a process to inform the optimisation and adoption of virtual care into end of life and palliative care services across NSW, in particular to improve access to care for people in regional, rural and remote areas. It aimed to assess the safety and effectiveness of virtual care in end of life and palliative care.

Methods

This evidence check used a simplified review method to provide a balanced assessment of what is already known about the topic. This expedited evidence synthesis method is chosen for its advantage in producing relevant evidence for health policy and systems decisions in a short timeframe.⁹ The stages were as follows: question refinement, defining inclusion criteria, search strategy and study selection, data screening and extraction and narrative synthesis.

Inclusion and exclusion criteria

The eligibility criteria were defined according to the participants, intervention, comparator, outcome and study design (PICOS) approach. The specific inclusion and exclusion criteria are listed in Table 1.

Table 1.

Inclusion and exclusion criteria.

Inclusion criteria

• Published in English.
• Published from 2010-current.
• Population: all people who have a life-limiting illness, or are identified as approaching the end of life, including:
○ neonates, infants and children
○ adolescents and young adults
○ adults.
This includes, but is not limited to people living with:
○ congenital disorders, conditions or disease
○ neurodegenerative or neuromuscular diseases
○ frailty, multiple comorbidities and/or dementia
○ a diagnosis of advanced cancer
○ end-stage chronic disease.
• Intervention: delivery of end of life and palliative care services using virtual modalities (including telephone, videoconference, remote monitoring, store and forward).
• Comparator: delivery of end of life and palliative care services face-to-face only.
• Outcome: patient, healthcare provider, caregiver reported outcomes; safety and others as identified in the literature.
• Study design: systematic and evidence reviews, experimental, feasibility and evaluation studies with comparative data.

Exclusion criteria

• Not virtual care or end of life or palliative care related.
• Letters, comments, editorials, study protocols, conference abstracts.
• Studies without a comparison group.
• Review articles without systematic search strategy and methods.

Search strategy and study selection

The PICOS criteria was used to guide the development of PubMed search strategy (see Table 2). The initial PubMed and Google searches were run in December 2020 and re-run in February and March 2021 respectively for additional studies.

Table 2.

Search strategy.

PubMed search strategy

(“telemedicine"[MeSH Terms] OR “remote consultation"[MeSH Terms] OR “telemedicine"[Title/Abstract] OR “telehealth"[Title/Abstract] OR “virtual care"[Title/Abstract] OR “tele"[Title] OR “telecommunicat*"[Title/Abstract] OR “video conferenc*"[Title/Abstract] OR “teleconferenc*"[Title/Abstract] OR “telemonitor*”[Title/Abstract] OR “teletherap*”[Title/Abstract] OR “mhealth”[Title/Abstract] OR “m-health”[Title/Abstract] or “digital health”[Title/Abstract] OR “remote monitoring"[Title/Abstract] OR “teleconsult*"[Title/Abstract] OR “e-health"[Title/Abstract]) AND (“palliative care"[MeSH Terms] OR “palliat*"[Title/Abstract] OR “hospices"[MeSH Terms] OR “terminally ill"[Text Word] OR “Terminal Care"[MeSH Terms] OR “Terminal Care"[Text Word] OR “end of life"[Title/Abstract]) AND 2010/01/01:3000/12/31[Date - Publication]

Google/Google Scholar search terms (first five pages only)

(End of life OR palliative care) AND (telemedicine OR telemonitor OR telehealth OR eHealth OR mHealth)

Data screening and extraction

The studies yielded from PubMed and Google search were imported into Covidence online tool¹⁰ for title/abstract and full text screening. Data from eligible studies were extracted in a Microsoft Word document in table format and key information extracted included study type, participants, intervention characteristics, key outcomes/findings, and conclusions.

Data synthesis

Data was synthesised narratively¹¹ by exploring common themes and patterns across included studies and using textual description, categorisation and tabulation methods.

Results

Characteristics of included studies

A total of 33 studies, including 19 review articles and 14 interventional/evaluative studies, were included (see Figure 1 for PRISMA flow diagram). A wide range of virtual care (or otherwise described as telehealth, digital health or m-Health) modalities used by patients, caregivers or healthcare providers were reported in the included studies.

Figure 1.

PRISMA flow diagram.

Virtual care modalities

The two main types of modalities reported were video consultation (via videophones, computers with external webcam, tablet or mobile devices or other videoconferencing equipment) and mobile apps.^12–14 Video consultation was commonly used to supplement existing face-to-face palliative care (most common);¹⁵ substitute face-to-face palliative care;¹⁵ for symptom management;¹⁶ clinical assessment;¹⁵ modifications to management options;¹⁶ provision of emotional support to patients and caregivers;¹⁶ to provide information;¹⁷ and have interactive consultation and case discussions.^15,18 Mobile apps (other than videoconferencing apps), which were either research-based or commercially available through app stores on mobile devices, were most commonly used for symptom and functional needs assessment and tracking;^14,19,20 as well as electronic alerts;¹⁹ information provision, education and coaching;^14,19 resource finding;¹⁹ bereavement support;²⁰ and the correct use of drugs.¹⁴

Other modalities described in the included studies include websites, telephone, email, SMS, alert messages, digital questionnaire, digital pen, online education, and electronic patient records.^{4,12,17,21–24} These are commonly used for symptom and functional needs assessment, management and tracking;^17,21 information provision and education;¹⁷ decision support;¹⁷ psychological support for caregivers;²⁵ out-of-hours telephone support;¹⁸ and promotion of advanced care planning.¹⁷

Outcomes of virtual care interventions in end of life and palliative care

Patient outcomes

Quality of life: Similar or favourable quality of life outcomes to face-to-face palliative care were reported across studies, especially when virtual care is used as a supplement, rather than a substitute, to regular face-to-face care.^{15,16,22,23,26} Quality of life outcomes of patients were generally not measured by studies with paediatric patient cohorts.²⁷

Participation in care planning: In one systematic review, video consults demonstrated efficacy as a decision support tool in advanced care planning.¹⁷ In another systematic review, six studies reported that teleconferencing enabled patient participation in interdisciplinary hospice team meetings.¹⁵

Patient reported outcomes: Positive perceived usefulness and helpfulness were reported across systematic reviews and individual studies.^13,28,29 The ability to be able to connect to their healthcare providers via video was found to be useful by patients in a scoping review.¹³ The online webinars were noted for their lack of interpersonal communication and visual cues.¹³ In a controlled pilot trial, a mobile tool which aimed to educate patients using short video vignettes and short activities significantly improved patient preparedness for an upcoming palliative care visit.³⁰

Anxiety and depression: Mixed findings were reported across studies, with majority reporting improvement^15,23 or non-significant effect when compared with usual care.²⁶ In paediatric palliative care, two systematic reviews reported favourable outcomes or no detrimental effect of home telehealth on mental health across included studies.^27,29 One randomised control trial (RCT) reported significantly higher distress and anxiety scores; and non-significantly different depression scores in the intervention group receiving care via telehealth.³¹

Time to follow-up: A retrospective chart review found patients receiving outreach telehealth services had significantly more counselling encounters and a shorter median time from initial consultation to follow-up.³²

Patient symptoms and/or functional status: One systematic review found improved or non-significant difference in patient symptoms.²³ One RCT study reported significantly more improvements in pain intensity scores and pain interference scores in patients receiving weekly nurse-led telephone coaching sessions following face-to-face consultation.²⁵ A pooled analysis of two unblinded RCT studies found that, compared with an intervention that only provided caregivers with access to an online support system, an additional e-alert system that sends an automatic alert to the clinician significantly improved patient symptoms.²⁴ A retrospective chart review study found children with hypoplastic left heart syndrome, who received telemedicine home monitoring with a designated cardiology team, had significantly lower complications after stage II and significantly higher weight-for-age score.³³

Healthcare provider outcomes

Healthcare provider reported outcomes: Positive attitudes for perceived usefulness and feasibility were reported across systematic reviews.^{4,15,22,27,28} Improved communication, including improved contact with caregivers and patients, was also reported across systematic reviews.^14,15,17,22

Best practice care delivery: In one systematic review, telemedicine consultations were found to be just as effective as face-to-face consultations in delivering key principle components of paediatric palliative care consultations.³⁴

Caregiver outcomes

Quality of life: No significant difference was found in one systematic review³⁵ and an RCT.²⁵

Anxiety and depression: Mixed findings were found across studies. One systematic review found decreased levels of anxiety (2 out of 3 studies) or no significant difference (1 out of 3 studies).³⁵

Caregiver-reported outcomes: Overall satisfaction and positive perceived usefulness and helpfulness with the telehealth programs were reported across systematic reviews and individual studies.^15,16,28,35

Caregiving burden: In one systematic review, one study found decreased burden, and another found no significant difference.³⁵ One RCT study found no significant effect.²⁵

Health system outcomes

Use of emergency services: Mixed findings were reported across studies. The majority of studies included in review studies reported favourable (i.e. reduction in emergency visits, hospital admissions and stay) or non-significantly different outcomes compared to face-to-face only models of care.^4,14,22 One RCT study in a systematic review found no difference in emergency department visits, while other non-RCT studies found a reduction.⁴

Hospital admissions: Mixed findings across studies, with the majority of studies reporting a favourable outcome (i.e. a reduction in hospital admissions) or no difference.^4,5

Home visits: A decrease in home visits were reported in one review study.¹⁴ One RCT study found an increase in home visits in patients with respiratory failure and using telemonitoring.^4,36

Cost effectiveness: Virtual care was found to be cost-effective across systematic reviews and individual studies. It resulted in cost-savings associated with hospital admissions and hospital care, travel and time attending home visits for providers and attending appointments for patients and carers.^{15,23,28,29,37,38}

Other: One quality improvement study consisted of twice-daily scheduled telephone calls to hospice patients by specially trained customer service staff or nurses. This resulted in a lower mean (per 1000 patient days) of on-call urgent visits, unscheduled routine visits, routine nursing visits, physician visits, phone calls directly related to patient care, phone calls indirectly related to patient care, and after-hours incoming calls.³⁸

Challenges of using virtual care to deliver end of life and palliative care

Included studies described a number of challenges, such as technology limitations, ethical concerns, trust and administrative barriers, in delivering virtual care in end of life and palliative care. Unfamiliarity with the technology, small font size or screen size, lack of portability or suitability for certain patient groups were noted for technological limitations.¹³ Issues relating to privacy, security and confidentiality of patient data and patient conversations; informed consent; equal access; the medicalisation of the home environment; and lack of human-touch were raised as ethical concerns.²¹ The need for trust and confidence in care providers were highlighted.^14,15 Administrative challenges included time-consuming administration; ad-hoc consults disrupting work routine; inadequate resources; lack of consensus on criteria for referrals; technical challenges, such as limited training/computer skills of some health professionals; resistance from the ‘gate keeper’ clinicians; concerns/avoided discussions of sensitive topics due to limits of communication medium.^15,29

Studies also noted lack of high-quality studies, including large-scale effectiveness and quantitative evaluative research and RCTs,^{4,12,22,27,29,39} and high risk of bias in the currently available primary studies due to ethical and logical concerns.^27,39

Discussion

This rapid evidence check used a narrative synthesis method to provide an overview of the outcomes of virtual care interventions and associated challenges in end of life and palliative care. Overall, studies reported similar or favourable quality of life and other relevant outcomes to face-to-face palliative care, especially when virtual care is used as a supplement rather than a substitute for face-to-face care. Most studies found virtual care modalities to be safe and effective in end of life and palliative care with no detrimental adverse outcomes.

The findings from the evidence check are similar to findings from other review articles. A recent rapid review on delivery of palliative care to remote communities found telehealth to be feasible and effective despite some challenges which are similar to those identified in this current evidence check.⁴⁰ A systematic review and meta-analysis of telehealth interventions on quality of life of cancer survivors concluded that these supplementary interventions significantly improved the quality of life compared with face-to-face usual care.⁴¹ Another systematic review found telehealth significantly improved family caregiver outcomes and satisfaction in chronic disease and hospice care.⁴² A recent feasibility study from Australia found that integrated telehealth-assisted home-based specialist palliative care had favourable outcomes compared to standard care in terms of slower functional decline and fewer healthcare visits and hospital admissions.⁴³

The evidence check identified challenges associated with virtual care including technology limitations, ethical concerns and administrative barriers. These types of challenges can be addressed through involving and continually incorporating input from both the patients, healthcare providers and caregivers in designing and delivering virtual care services. There is currently a lack of effectiveness/evaluative studies in this specific area of research, which is partly attributable to the ethical and logical concerns relating to equal access, participant recruitment, consent and retention.^27,39 Most available studies do not address the after-hours aspect of the virtual care interventions. Therefore, more research is needed to address the evidence gap in evaluating the effectiveness of virtual care interventions across various disease conditions, age groups and delivery modalities using robust study designs such as RCTs or cohort comparisons. Future research should also investigate what other interventions and modalities are being used in other closely relevant disciplines such as oncology to identify new directions for end of life and palliative care.

Given the fast-tracked nature of this evidence check, the following limitations should be noted. The search was not exhaustive. The data was screened by one author only and therefore there is a possibility of false exclusion of potentially eligible studies due to an individual error. There was no formal quality appraisal of included studies, which is a common practice and a known ‘short-cut’ among rapid reviews.⁴⁴ However, these methodological limitations should be considered in light of the advantages brought by this method and other factors that have strengthened the quality of this work. The methodological approach used in this rapid evidence check aligns with the consistent approaches outlined in existing protocols for rapid reviews.⁴⁵ This work was produced in a relatively short period of time (two months part time). This is as opposed to an average of 6–12 month timeline and 1000–2000 person-hours of staff time per review for a full systematic review.⁹ A study which compared the findings of rapid reviews versus systematic reviews on the same topic found that the conclusions from these two types of reviews may not necessarily fundamentally different from each other.⁴⁴ Despite not having formal quality assessment, only review studies and cohort studies with comparative data, which are considered to be of higher quality and have lower risk of bias compared to cross-sectional or case reports, were included. This work was reviewed and produced with the involvement from experts, clinicians, policy makers and other stakeholders throughout, strengthening its relevance to emerging discussions and developments in this subject area.

The evidence presented in this rapid evidence check suggest that virtual care in end of life and palliative care has the potential to function as an effective model of care delivery to supplement face-to-face care.

Footnotes

Acknowledgements

We acknowledge members of the NSW Virtual Care in End of Life and Palliative Care Steering Committee who discussed and sense checked the findings of the review.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship and/or publication of this article.

ORCID iD

Catherine Eggett

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