Exploration of Patient and Clinician Experience of Video Consultations in Community Palliative Care.

CONTEXT: Telehealth video consultations (VCs) were implemented in the community palliative care team (CPCT) in a regional NSW health district, Australia, as a response to restrictions to the COVID-19 pandemic, using patient's device in the absence of a clinician. OBJECTIVES: To evaluate patient/carer and clinician satisfaction in using VCs for CPC consultations; to explore advantages and challenges of VCs. METHODS: Self-reported online questionnaires to community-dwelling patients under care of the CPCT; seeking patients/carers and clinician perspectives on the VCs from April to September 2020. RESULTS: Of 126 eSurveys completed, (85 clinicians; 41 patients/carers), 97% patient/carers and 97% clinicians indicated they were satisfied with VC. Overall, 93% clinicians agreed they provided same level of care compared to face-to-face review; 85% patients/carers agreed they received same level of care compared to face-to-face consultations and 98% agreed their issues were addressed. Of eSurvey responses 97% clinicians and 78% patients/carers indicated they would continue to use VCs in practice. Comments indicated dissatisfaction with lack of personal examination; some found technological issues to be barriers. Benefits discovered incidentally were empowering patient independence to live out their end-of-life desires while being treated/supported, improved service delivery, increased staff autonomy and upskilling staff. CONCLUSION: Users in this study perceived VCs to have a place in CPC consultations. Using patient device enabled patient freedom, improved timeliness of clinical assessment, and communication to complement face-to-face consults, while minimizing infection risk. Unexpected, but valuable benefits were revealed. Workable technology is paramount.

Factors Associated With Mode of Separation for People With Palliative Diagnoses With Preference for Home Death Receiving Care From a Nurse-Led End of Life (Palliative Extended and Care at Home) Program.

Palliative Extended and Care at Home (PEACH) is a rapid response nurse-led package of care mobilized for palliative care patients who have an expressed preference to die at home. This study aimed to identify the demographic and clinical predictors of home death for patients receiving the package. Deidentified data were used from administrative and clinical information systems. Univariate and multivariate analyses were conducted to assess association of sociodemographic factors with mode of separation. Furthermore, 1754 clients received the PEACH package during the study period. Mode of separation was home death (75.7%), hospital/palliative care unit admission (13.5%), and alive/discharged from the PEACH Program (10.8%). Of participants with clear preference to die at home, 79% met their wish. Multivariate analysis demonstrated cancer diagnosis, patients who wished to be admitted when death was imminent, and patients with undecided preference for location of death were associated with an increased likelihood of being admitted to the hospital. Compared with those with spousal caregivers, those cared for by their child/grandchild and other nonspouse caregivers were significantly associated with a decreased likelihood of being admitted to the hospital/palliative care unit. Our results show that opportunities to tailor home care based on referral characteristics to meet patient preference to die at home, at individual, system, and policy levels, exist.

Does Geography Play a Role in the Receipt of End-of-Life Care for Advanced Cancer Patients? Evidence from an Australian Local Health District Population-Based Study.

Objectives: To assess the influence of geographic remoteness on health care utilization at end of life (EOL) by people with advanced cancer in a geographically diverse Australian local health district, using two objective measures of rurality and travel-time estimations to health care facilities. Methods: This retrospective cohort study examined the association between rurality (using the Modified Monash Model) and travel-time estimation, and demographic and clinical factors, with the receipt of >1 inpatient and outpatient health service in the last year of life in multivariate models. The study cohort comprised of 3546 patients with cancer, aged ≥18 years, who died in a public hospital between 2015 and 2019. Results: Compared with decedents from metropolitan areas, decedents from some rural areas had higher rates of emergency department visits (small rural towns: aRR 1.29, 95% CI: 1.07-1.57) and ICU admissions (large rural towns: aRR 1.32, 95% CI: 1.03-1.69), but lower rates of acute hospital admissions (large rural towns: aRR 0.83, 95% CI: 0.76-0.90), inpatient palliative care (PC) (regional centers: aRR 0.85, 95% CI: 0.75-0.97), and inpatient radiotherapy (lowest in small rural towns: aRR 0.07, 95% CI: 0.03-0.18). Decedents from rural and regional centers had lower rates of outpatient chemotherapy and radiotherapy use, yet higher rates of outpatient cancer service utilization (p < 0.05). Shorter travel times (10-<30 minutes) were associated with higher rates of inpatient specialist PC (aRR 1.48, 95% CI: 1.09-1.98). Conclusions: Reporting on a series of inpatient and outpatient services used in the last year of life, measures of rurality and travel-time estimates can be useful tools to estimate geographic variation in EOL cancer care provision, with significant gaps uncovered in inpatient PC and outpatient service utilization in rural areas. Policies aimed at redistributing EOL resources in rural and regional communities to reduce travel times to health care facilities could help to reduce regional disparities and ensure equitable access to EOL care services.

Palliative Care Home Support Packages (PEACH): a carer cross-sectional survey.

BACKGROUND: In December 2013, a partnership between five local health districts and a non-governmental organisation implemented the Palliative Care Home Support Packages (PEACH) Program. The PEACH Program aims to support palliative care clients in their last days of life at their own home. This study sought to evaluate the quality of care delivered by the service from the perspective of clients' primary carers. METHODS: A letter was sent to carers of clients 6-10 weeks after the client's death, inviting them to participate in an anonymous survey. The survey measured the level of satisfaction on various aspects of the service using FAMCARE and Likert scales, and invited for comments about the care received and suggestions for improvement. RESULTS: Out of 17 aspects of care provided by the PEACH Program, 13 were scored with 'exceptional' or 'acceptable performance'. The highest satisfaction was observed in meeting clients' physical needs and providing pain relief. The most dissatisfaction was observed in addressing spiritual matters, family conferences and information about treatment side effects. Ninety-five per cent of responses were either 'satisfied' or 'very satisfied' with the overall care provided at home during the last week of the client's life. CONCLUSION: The results of this research provide further evidence to the field of what constitutes a good home death and the support mechanisms required to enable this. The results also have strong implications on how local services provided by the PEACH Program are delivered in the future.

Who needs, receives and misses out on palliative and end-of-life care? A population-based study to identify needs and gaps in a regional health service.

Objective The aim of this study was to assess the unmet need for palliative and other end-of-life care, as well as the sociodemographic and diagnostic factors associated with suboptimal access, among residents in an Australian region. Methods A cross-sectional descriptive and analytical study was performed using non-identifiable linked data from four administrative and two clinical datasets. The study population comprised 3175 patients aged ≥15 years who died in hospital in 2016 and 2017. The main outcome measures were the proportion of decedents potentially benefitting from end-of-life care and receiving end-of-life care. Results An estimated 74.8% of decedents needed palliative or other end-of-life care in the year before death. Approximately 13.3% did not receive any end-of-life care despite its potential benefit. The highest proportions with 'unmet need' were decedents with chronic obstructive pulmonary disease (31.0%) and heart failure (26.3%). Adjusting for sociodemographic and diagnostic factors, access was lowest among those aged <65 years (adjusted odds ratio (aOR) 0.44; 95% confidence interval (CI) 0.31-0.64) and those with heart failure (aOR 0.58; 95% CI 0.47-0.72). Conclusions Estimates of need and access provide a sound basis for planning local palliative and end-of-life care services. These methods can be used on an ongoing basis to monitor service delivery. What is known about this topic? There is a small but expanding literature on estimating the need for palliative care at a population level. There is a lack of data regarding access to palliative and other end-of-life care across multiple settings (e.g. home, specialist palliative care unit, hospital) and patient groups (e.g. defined by sociodemographics and diagnostics). What does this paper add? The study builds on previously used methods for estimating the need for palliative care, with some refinements, including the addition of 'other clinical indications' and the use of weights to derive more realistic estimates. The estimates of need are consistent with recent estimates from Australia and overseas, whereas the estimates of access are similar to a recent Australian estimate, but higher than estimates from overseas. The gaps in access are highest among those with the major types of chronic organ failure, particularly heart and respiratory. What are the implications for practitioners? The study demonstrates how routinely collected data at a regional level can be used to estimate need and access to palliative and end-of-life care, in the hospital and in the community. These methods of estimating need and unmet need can be used to inform the planning and development of services, as well as to monitor progress with implementation of changes in service provision.

Dexmedetomidine for hyperactive delirium at the end of life: An open-label single arm pilot study with dose escalation in adult patients admitted to an inpatient palliative care unit.

BACKGROUND: Terminal delirium, specifically the hyperactive delirium subtype at the end of life, is common in palliative care patients. Standard care often involves sedation to alleviate distress. The alpha2-adrenoreceptor agonist dexmedetomidine may have promise in terminal delirium, due to its properties of decreasing delirium and permitting rousable sedation. AIM: This study aimed to describe the effect of dexmedetomidine on delirium and sedation, when delivered via continuous subcutaneous infusion (CSCI) in patients with terminal delirium. DESIGN: The trial was prospectively registered in the ANZCTR database (ACTRN12618000658213) and conducted in accordance with CONSORT (pilot study extension). Twenty-two adult patients were treated with a CSCI of dexmedetomidine with a two-tier dose schedule, low and high dose. Delirium severity was measured by the Memorial Delirium Assessment Scale (MDAS, target <13), and sedation by the Richmond Agitation-Sedation Scale, Palliative Version (RASS-PAL, target -1 to -3). RESULTS: All patients had a response to dexmedetomidine as measured by decrease in MDAS after initiation; 59% required escalation to high dose to maintain control of delirium. All responses to high dose were sustained. RASS-PAL scores showed significant variability, however mean scores remained within target range on both doses, and the majority of patients were rousable. Fifty percent of patients treated crossed over to standard care; no patients who crossed over were experiencing moderate-severe delirium. Predominant reason for crossover was family request for deeper sedation. CONCLUSION: Dexmedetomidine shows potential for the management of terminal delirium with improved interactivity. Further research is needed to determine efficacy compared to current standard care.

Breakthrough Medication in Unresponsive Palliative Care Patients: Indications, Practice, and Efficacy.

CONTEXT: An unresponsive patient's need and their response to breakthrough medication is determined by clinical assessment and/or observational measures. How closely these methods match the patient's experience is unknown. OBJECTIVES: Determine the efficacy and effectiveness of breakthrough medication in unresponsive patients and the perception of patient comfort made by nurses and family. METHODS: A prospective study of breakthrough medication in unresponsive patients. The Richmond Agitation-Sedation Scale (RASS) and Patient Comfort Score (PCS) were compared with time-matched Bispectral Index (BIS) Scores. The effects of opioid vs. opioid + benzodiazepine breakthroughs and the relation between synchronous nurse and family measurements of the PCS were evaluated. Analysis of variance and paired t-tests were used for BIS analyses and nonparametric Mann-Whitney tests for RASS and PCS. RESULTS: Significant reductions at 30 and 60 minutes after breakthrough medication were noted for BIS (P < 0.0004), RASS (P = 0.043 and 0.004, respectively), and PCS (P < 0.0004). A direct comparison of the effect of opioid breakthrough medication vs. opioid plus benzodiazepine revealed no significant difference (BIS, P = 0.512; RASS, P = 0.195; PCS, P = 0.119). Of the 157 synchronous nurse and family measures of patient comfort, families rated patient discomfort significantly higher than nurses (P < 0.0004). CONCLUSION: This study provides additional evidence for the efficacy and effectiveness of breakthrough medication and the merit of observational measures in determining a patient's response. The onset of action is evident at 30 minutes after injection. Family assessment of patient comfort may be more nuanced than that of nurses, and they not uncommonly rate patient discomfort higher than nurses.

Correlation Between Observational Scales of Sedation and Comfort and Bispectral Index Scores.

CONTEXT: When palliative care patients enter the phase of unconsciousness preceding death, it is standard practice to initiate or continue a subcutaneous infusion of an opioid plus or minus a sedative. The doses are determined somewhat empirically and adjustments are based on clinical assessment and observational measures of sedation and comfort. Following reports that these observational measures could be misleading, this study assesses their validity by comparing them with an objective measure of sedation, the Bispectral Index Score (BIS). OBJECTIVE: The objective of this study was to determine the validity of the Richmond Agitation and Sedation Scale (RASS) and the Patient Comfort Score (PCS) in assessing sedation and comfort in unconscious patients. METHODS: Forty eligible and consenting patients were monitored from the onset of unconsciousness (unresponsiveness) until death. Measures of sedation (RASS) and comfort (PCS) were made by the attending nurse every four hours. Correlation coefficients examined the relationship between fourth hourly RASS and PCS and time-matched BISs. RESULTS: A significant correlation was found between RASS and BIS and PCS and BIS. Sedation and comfort scores were concentrated at the lower end of the respective scales, whereas time-matched BISs were widely scattered with scores ranging from near full awareness to deep sedation. CONCLUSIONS: Compared with BIS, both RASS and PCS appear to be relatively blunt instruments at the lower end of their respective scales. Due caution should be taken interpreting and making clinical decisions based solely on the RASS and PCS and, by extension, other observational measures of patient comfort and sedation.