Telehealth-facilitated palliative care enables more people to die at home: An analysis of clinical outcomes and service activity data

doi:10.21203/rs.3.rs-3998477/v1

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Research Article

Telehealth-facilitated palliative care enables more people to die at home: An analysis of clinical outcomes and service activity data

https://doi.org/10.21203/rs.3.rs-3998477/v1

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Background

Telehealth-facilitated models of palliative care are a patient-focused way to deliver specialist care in or closer to home for people with a life-limiting illness. Telehealth can increase access to palliative care and support people experiencing symptoms of advanced disease in their own home, reducing the discomfort of travel. This retrospective cohort study examines the activity and outcomes of a regional telehealth-facilitated palliative care service to i) describe which patients are most likely to use telehealth; and ii) determine the impact of telehealth on patient outcomes including place of death, timely access to care, responsiveness to urgent needs and pain management.

Methods

Analysis of service activity data (patient demographics, care modality, consultation frequency) and Palliative Care Outcomes Collaborative data registry (place of death, timely access to palliative care, responsiveness to urgent needs as measured by time in unstable phase, pain management) were undertaken. Outcomes were compared between patients who had no videoconsultations (n = 683) and those who had one or more videoconsultations (n = 524).

Results

Compared to people who had no videoconsultations, those who had at least one appointment via video were: more than twice as likely to die at home and spent a shorter amount of time in the unstable phase of palliation. Mixed results were found regarding timely access to palliative care. There was no significant difference in pain management between consultation modes.

Conclusion

Telehealth-facilitated palliative care has multiple benefits, including the increased likelihood of fulfilling someone’s wish to die at home, often their preferred place of death.

palliative care

telehealth

telemedicine

preferred place of death

telepalliative care

Telehealth-facilitated models of palliative care are a patient-focused way to facilitate specialist care in or closer to home for people with a life-limiting illness.^{1, 2} Telehealth can enable consultations with the palliative care team without the need for patients and their families to leave their place of residence or travel long distances. The impact of delivering such care cannot be understated for people experiencing symptoms of advanced disease, as it can reduce the discomfort of travel, and sitting in clinical waiting rooms.³ It also can reduce exposure to infectious diseases that are often in higher levels in clinical environments.^{4, 5} As well as improved access to palliative care, telehealth has the potential to: increase monitoring and support; prevent the escalation of symptoms and crises,⁵ improve patient outcomes; reduce the use of unnecessary clinical services (e.g. emergency departments, hospital admissions)⁶ and increase palliative care staff satisfaction.⁷

Given constrained palliative care resources and geographical difficulties may inhibit access to care for some people, better use of models of care using newer technologies is needed ⁸ but are currently underutilized.^{9, 10}

Recent research provides examples of telehealth-facilitated palliative care that has been rapidly implemented in response to the COVID-19 pandemic and need to control infection.^{5, 10} However, ambiguity about the role and effectiveness of telehealth demands a stronger evidence base ¹¹ with many services not undergoing evaluation.¹² A lack of routine application of telehealth, especially within palliative care services,^{10, 13} means that increased evidence is needed regarding the clinical and cost effectiveness, and acceptance of such services.¹¹ Clinician resistance to change and lower rates of acceptance of telehealth¹⁴ creates a need to establish evidence regarding the costs and benefits of a telehealth service.⁷ While some evidence regarding high levels of patient and caregiver satisfaction¹⁵ and clinical benefits of telehealth in palliative care exist,^{5, 16} there is still some ambiguity regarding patient outcomes^{5, 17} presenting the need for further evaluation of telehealth services.

A central tenet of palliative care philosophy is to empower people’s choices during end-of-life care to enable a “good death.”^{16, 18–20} For instance, palliative care aims to fulfill people’s wishes regarding where they wish to die. Many people wish to die in or close to home to enhance physical and psychological comfort.^{18, 19, 21} Yet, over half the deaths in Australia occur in a hospital setting.²² While there is some evidence demonstrating phone support as a way to facilitate preferred place of death,²³ further examination of the impact of telehealth (both video and phone) on place of death is needed. Another way to address people’s needs during end-of-life care is through early involvement of a specialist Palliative Care Team. It is well established that numerous psychosocial and clinical benefits are associated with early referral to Palliative Care,^24–26 which may be enhanced through telehealth.¹⁷

A telehealth-facilitated service was implemented in the [deidentified for peer review] palliative care service in 2016, leading to gradual expansion of the service over time. The [deidentified for peer review] Palliative Care Service, is operated as part of a specialist palliative care service in a metropolitan tertiary hospital. The telehealth service was developed to complement existing in-person care and provide palliative care to people in an urban and regional setting in [deidentified for peer review], Australia. It aimed to improve patient outcomes in a range of ways: increase care to patients in their own home rather than in hospital to alleviate discomfort; increase the likelihood of people dying in their place of preference (often the home); reduce visits and demand on the emergency department; and increase timeliness of specialist palliative care provision. Reducing the need for staff to travel to a patient’s home, efficiency gains were realised with a 189% increase in consultations with the same staffing allowance. This meant that the time staff would normally spend commuting to residential settings, could now be spent on increased engagement with patients, online or otherwise.⁷

This current study will examine patient outcomes associated with the delivery of the telehealth-facilitated palliative care service. Specifically, this study aims to i) describe which patients are most likely to use a telehealth-facilitated model of palliative care; and ii) determine the impact of telehealth on patient outcomes including place of death, timely access to care, responsiveness to urgent needs, and pain management.

Setting

The telehealth service was introduced in February 2016 to support patients requiring end of life care in their own home. As discussed above, the service was established to reduce clinician travel and increase efficiency (time available to deliver patient care). [deidentified for peer review]. Palliative Care serves a large 2400km² area that hosts a growing population (around 600,000). There are increasing amounts of people moving into the area from other Australian regions, which results in reduced social support. The traditional model of care meant that consultants travelling to patients’ home were only seeing an average of three patients per day. Since its inception, the telehealth service has expanded so that community carers (e.g., from non-government nursing organisations) can use this mode of delivery to consult with palliative specialists, nurses, and allied health professionals.

Data collection

Two data sources representing information from February 2016 to July 2019 were utilised: the [deidentified] Palliative Care Service administrative data and the Palliative Care Outcomes Collaborative (PCOC; ²⁷ dataset. Combining the datasets enabled model of care information to be linked with patient outcomes. The datasets were linked via medical record number and date of birth. This merged data set was de-identified prior to analysis.

Telehealth Palliative Care administrative data. These data were drawn from the service's activity data collected via the Enterprise Scheduling Management system. This dataset captures patient demographics and information on the model of care provided (e.g., in-person, telephone, videoconference, age, postcode) and the frequency and number of consultations. Due to limited resources, there is varying eligibility criteria determining access to palliative care across Australia. The service in this study had a holistic needs-based prioritisation for those with life limiting illness. Patients are initially assessed and followed up according to their individual needs. That is, some patients are only seen once with others having numerous consultations. General Practitioners and community nurses provide the main support, with the specialist service supplementing where there was added benefit.

PCOC dataset. The PCOC dataset was established in 2005 by the University of Wollongong and funded by the Australian Government Department of Health. Palliative care programs from across Australia routinely upload data into the PCOC registry enabling standardisation of clinical data across services to support national reporting and quality improvement.²⁷ The PCOC dataset, which captures demographic, setting and clinical assessment information for Palliative Care patients across Australia, provides data regarding patient demographics, phases of palliation and episodes of care.²⁷ PCOC Phases refer to five phases of palliation comprised of: stable, unstable, deteriorating, terminal, bereavement/post-death support. An Episode in PCOC is defined as a continuous period of care for a patient in one setting (i.e., hospital, private residence, residential aged care facility etc.). An Episode End involves a transition from one setting to another (e.g., hospital to discharge) or death. Place of death is defined as home, residential age care facility, hospital or unknown.

Measures

Primary outcome

Place of death. Place of death was documented as a binary variable: i) home or ii) not home (including aged care facility, hospital and unknown).

Secondary outcomes

Timely access to palliative care: defined as the difference between data showing commencement of palliative care and the date the patient was ready for care.

Responsiveness to urgent needs

defined as the time from starting an unstable palliative phase until when it is addressed.

Pain management

captured as a binary variable (phases that ends with no or mild pain level vs phases that ends with moderate to severe pain level).

Statistical methods

We identified phases from the PCOC dataset that had at least one corresponding matched contact in the hospital service administrative dataset by comparing the phases and contacts identifiers and dates. Then data of phases (from PCOC dataset) and contacts (from service activity dataset) were merged to form the main dataset for this study (See Fig. 1 for data merging procedure). Descriptive statistics were used to summarise and compare different patient characteristics. Mean (standard deviation; SD) values were used for continuous variables, and frequencies (percentage) for categorical variables. Differences between telehealth and no telehealth were tested using the Student’s t-test (continuous variables) and Pearson’s χ2 (categorical variables) in different levels of data. Logistic regression for binary outcomes (i.e., place of death and pain management) and zero-inflated count models for time-to-event outcomes (i.e., time to access palliative care and time in unstable phase) were fitted to estimate the effect of telehealth. We used a zero-inflated model as there was an excess of zeros²⁸ in the responsiveness to urgent need and timely access (indicating numerous same day access to service events). In each zero-inflated count model, the zero-inflated part was modelled by a logistic regression and count part was modelled by a Poisson regression. All analyses were performed by R version 4.0.2 and p < 0.05 was considered significant.

INSERT FIGURE 1 HERE

Figure 1. Data merging process

During a 40-month period from March 2016 – July 2019, retrospective data showed 12,195 unique occasions of service or contacts shown in the hospital service administrative data and 10,827 phases in the PCOC database. Unique patient identification numbers were matched across the two datasets. The total merged dataset consisted of 4751 contacts from 2015 phases clustered in 1544 episodes from 1207 patients. See Fig. 1.

Demographics

Table 1 presents demographic data showing the proportion of different cohorts who did and did not use telehealth. Telehealth was used more with a slightly older cohort (median 75 years vs. 70 years). There were limited differences in the type of cancer and the use of telehealth. There was no significant difference in gender between those who did and did not use telehealth. Of the 1207 patients, all except 5 lived in a metropolitan area (MMM1) as determined by postcode and the Modified Monash Model classification.²⁹

Table 1

Sociodemographic and clinical characteristics of GCHHS Palliative Care patients as a function of modality of care
	No video (n = 683)
Gender
Male	382 (56.0%)	270 (51.5%)	652 (54.0%)
Age
Median (Q1-Q3)	71.0 (61.0–80.0)	75.1 (64.0–83.0)	72.6 (62.5–81.0)
Diagnosis
Missing	1	0	1
Cancer
Lung	128 (18.8%)	102 (19.5%)	230 (19.1%)
Colorectal/ gastrointestinal	196 (28.8%)	112 (21.4%)	308 (25.5%)
Breast	45 (6.6%)	24 (4.6%)	69 (5.7%)
Head & neck	36 (5.3%)	27 (5.2%)	63 (5.2%)
Haematological	28 (4.1%)	34 (6.5%)	62 (5.1%)
Other cancer (e.g., bone, CNS, urology)	186 (27.3%)	142 (27%)	328 (27.1%)
Cardiovascular
Cardiovascular disease	5 (0.7%)	11 (2.1%)	16 (1.3%)
Stroke & neurological conditions
e.g., stroke, dementia, motor neuron disease	19 (2.7%)	22 (4.3%)	41 (3.3%)
Organ failure
e.g., respiratory, liver, renal, sepsis	29 (4.2%)	48 (9.1%)	77 (6.4%)
Other non-malignancy
Other non-malignancy	10 (1.5%)	2 (0.4%)	12 (1.0%)

Main outcomes

Table 2 shows the primary and secondary outcomes, comparing models of care with at least one videoconsultation compared with no videoconsultations. Outcomes of people’s place of death, pain management, timely access to palliative care and time in an unstable phase have been examined as a function of whether or not someone had at least one appointment via videoconsultation.

Place of death. As shown in Table 2, patients with at least one telehealth appointment were more than twice as likely to die at home (OR: 2.37; 95%CI: 1.79–3.15; p < 0.001).

Timely access to Palliative Care. Same-day commencement (initial palliative care assessment occurring on the same day as the patient is ready to receive care) of the service was 54% less often in those episodes with at least one telehealth contact as compared to those without telehealth contact (OR: 0.46; 95%CI (0.36–0.59); p < 0.001). However, among episodes without same day commencement, phases with at least one telehealth consultation tended to receive their palliative service sooner as compared to phases without telehealth contact (IRR: 0.71 (0.62–0.81); p < 0.001).

Responsiveness to urgent needs. There was no difference in frequency of unstable phases among phases with and without at least one telehealth consultation (OR: 1.35; 95%CI (0.56–3.24); p = 0.503). However, among unstable phases, phases with at least one telehealth consultation tended to end earlier as compared to phases without telehealth contact (IRR: 0.73 (0.56–0.95); p = 0.019).

Pain management. There was no difference in pain management in phases with at least one telehealth consultation and those without telehealth consultation (OR: 0.94; 95%CI: 0.74–1.20; p = 0.623).

Table 2

Impact of telehealth on place of death, timely access to palliative care after patient readiness for care, pain management and responsiveness to urgent need (unstable phase)
	Logistic regressions
Dependent variable	Odds Ratios	CI	p value
Place of death	2.37	1.79–3.15	< 0.001
Observations 1030
Pain management Observations 1333	0.94	0.74–1.20	0.623
Zero-Inflated models
Responsiveness to urgent needs	Incidence rate ratio
Count model	0.73	0.56–0.95	0.019
Zero-Inflated model	1.35	0.56–3.24	0.503
Observations 1207
Timely access	Incidence rate ratio
Count model	0.71	0.62–0.81	< 0.001
Zero-Inflated model	0.46	0.36–0.59	< 0.001
Observations 1522

Results showed that patients who accessed the tele-palliative care service (had at least one videoconsultation) were significantly more likely to die at home and had a reduced amount of time in an unstable phase where symptoms were not controlled. There was no difference between telehealth and the traditional model of care in terms of the number of unstable episodes a patient had and pain management. There were mixed results regarding the impact of telehealth on timely access to care. Demographic results showed which cohorts accessed videoconsultations in the palliative care service. Older patients were more likely to have had videoconsultations compared to a slightly younger cohort.

Increased ability to choose one’s place of death

Results showing that those patients who have at least one videoconsultation were twice as likely to die at home is of utmost importance. This result makes sense, when evidence shows that access to specialist palliative care increases the likelihood of someone dying in their preferred place of death, often the home,³⁰ and videoconsultations are a virtual means of delivering palliative care with greater flexibility, predominantly into the home. There is much research indicating the benefits for people who have their wishes fulfilled regarding where they die and can lead to a “good death”.^{16, 20, 21} Indeed, not only is there potentially more peace for the person dying, if they die at home or in their preferred place of death³¹ but there can also be positive impacts on the bereaved family. When a person dies in their preferred place of death, it can lessen the intensity of bereavement for family and caregivers.^{31, 32} Such positive impacts cannot be understated as bereaved family share death stories of loved ones over the years, as part of a health grieving process.³³

Timely access to care

The results regarding timely access to palliative care were mixed. In-person care resulted in more ‘same-day’ consultations - as in an initial palliative care assessment occurred on the same day as the referral to the [deidentified] Palliative Care team. However, if the patients were not started in Palliative Care on the same day, telehealth resulted in faster access to care. The modality of each appointment (e.g., home visit, videoconsultation, clinic-based) is determined on a case-by-case basis and takes into consideration factors such as the clinical urgency, clinician availability, travel distance and the requirements of other personnel to be present at the appointment (e.g., community nurses and family members). Our data reflects this complexity. Same-day care was more likely to be provided in-person. However, for the cohort that were unable to receive same-day care (potentially those who lived further from the facility, were less urgent, or required additional scheduling complexities) telehealth resulted in more timely access.

Evidence is mixed with regard to the impact of referral to Palliative Care and inpatient admissions. Supporting our results above, Scibetta and colleagues³⁴ found that the earlier a person was referred to Palliative Care the lower rates of inpatient and emergency department use occurred in the last month of life. However, contrary to our findings, other research indicates that earlier referral to the palliative care service meant earlier admission to the hospice, but less aggressive end-of-life care.³⁵ Overall, however, the importance of early referral to palliative care for quality of life and optimal care is evident across a range of illnesses.^{36, 37}

Responsiveness to urgent need

As discussed in the results section, responsiveness to urgent need was assessed by examining the number of unstable phases patients experienced, and the length of time in those unstable phases. For instance, an unstable phase may be stabilised or ended through death. There was no difference between the two models of care (telehealth and in person care) in relation to time in terms of how many unstable phases occurred. Yet, patients who had used telehealth spent less time in an unstable phase compared with those who did not access videoconsultations. A reduction in time spent in the unstable phase aligns with Benchmark 2 of the Australian Palliative Care outcomes and benchmarking program.³⁸

Pain management

Given that there was no difference in pain management between the two models of care, the results also demonstrated that telehealth was no less effective than in person models of care in treating pain in palliative patients. Although it can be context-dependent there is strong evidence across medical specialties that videoconsultations can be as effective as in person consultations and bring varying benefits.⁵ Evidence shows a perception that videoconsultations offers advantages over telephone consultations, leading to the delivery of higher quality care.^{39, 40}

Limitations

This study is based on PCOC data and therefore reliant on the quality of the data. PCOC data is input by a range of clinicians and some decision-making regarding which phase a patient has a level of subjectivity.⁴¹ This issue, especially when determining the unstable phase, has been raised previously, but considering the clinicians inputting the current data are all Palliative Care trained less error is expected.⁴¹

Further, we did not have data indicating preferred place of death or whether patients lived alone. As such, we drew upon evidence that suggests most palliated individuals wish to die in their own homes,^{16, 42} with some estimates as high as 70% of people preferring to die at home.¹⁹ However, we also acknowledge that someone’s preferred place of death is what they regard as their ‘safe place, which may not necessarily be home.¹⁸

Future directions

Although this research aligns with evidence showing the benefits of care closer to home, it is important to consider the quality of care at home. Our research indicated that the [deidentified for blind review] Telehealth Palliative Care Service was not inferior regarding pain management, but further research is needed using the PCOC Symptom Assessment Scale, to ensure that all symptoms are being managed effectively in the home. Regardless, the main outcomes of this research indicates the benefits that can be gained across other palliative care services wherein a hybrid model of care (telehealth and in-person) can provide increased quality and patient-centred care.

This study showed that people, regardless of a range of demographic characteristics, can access palliative care through the use of telehealth. Of importance, bringing palliative care into the home by videoconsultation can more than double the likelihood of someone dying at home, often the preferred place to die, and reduce periods of unstable or acute symptoms. However, there were mixed results regarding the impact of telehealth on the timeliness of care access, which need further investigation. Pain management via videoconference was not inferior to in-person. The impact of increasing access to palliative care within one’s home, through telehealth has multiple benefits. This research highlights a major benefit of telehealth in increasing the likelihood of fulfilling someone’s preference to die at home, should they wish to do so.

Ethics approval and consent to participate: Ethics approval to use this service activity and patient data was provided by the [deidentified health service] Human Research Ethics Committee (HREC; HREC/2019/QGC/51879) and additionally ratified by the University HREC (ID: 2019002355). (name withheld for blind review)

Consent for publication: Not applicable.

Availability of data and materials: The datasets generated and/or analysed during the current study are not publicly available due to patient confidentiality and human research ethics agreements, but are available from the corresponding author on reasonable request.

Competing interests: Although the evaluation that led to this manuscript was carried out independently through University [deidentified for peer review], authors AB and JB are employees of the [deidentified for peer review] palliative care service.

Funding: Supportive and Specialist Palliative Care; Gold Coast Health, Queensland Health provided funding for an evaluation of the telehealth supported palliative care service.

Authors’ contributions: HH was the research lead and oversaw the project. ML designed and completed the statistical analysis, with additional statistical advice provided by CS and data analysis support from ET. AB was the clinical lead and helped coordinate the project and give advice on data matters. JB was responsible for data collection and transfer to the university staff. AS and LC provided research methods advice and LC, HH, ET wrote the main manuscript text. All authors contributed in part to writing and editing the manuscript, and all authors read and approved the final manuscript.

Acknowledgements: Thank you to the staff at the University of Wollongong, Australia, for their advice during the analysis of the Palliative Care Outcomes Collaboration data.

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Competing interest reported. Although the evaluation that led to this manuscript was carried out independently through The University of Queensland research team members, authors AB and JB are employees of the palliative care service.

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08 Mar, 2024
First submitted to journal
28 Feb, 2024

You are reading this latest preprint version

Telehealth-facilitated palliative care enables more people to die at home: An analysis of clinical outcomes and service activity data

Status:

Version 1

Abstract

Background

Methods

Results

Conclusion

Figures

Background

Methods

Setting

Data collection

Measures

Primary outcome

Secondary outcomes

Statistical methods

Results

Demographics

Main outcomes

Discussion

Increased ability to choose one’s place of death

Timely access to care

Responsiveness to urgent need

Pain management

Limitations

Future directions

Conclusion

Declarations

References

Additional Declarations

Status:

Version 1