Unmet needs of palliative home care patients and carers

This thesis focused on the unmet needs of patients, carers and nursing staff from a private palliative home care service in Victoria. Study results showed that participants were reluctant to disclose their unmet needs, despite having clearly identifiable problems in physical and psychosocial domains.

A shared care model pilot for palliative home care in a rural area:Impact on symptoms, distress, and place of death

Context: Shared care models integrating family physician services with interdisciplinary palliative care specialist teams are critical to improve access to quality palliative home care and address multiple domains of end-of-life issues and needs. Objectives: To examine the impact of a shared care pilot program on the primary outcomes of symptom severity and emotional distress (patient and family separately) over time and, secondarily, the concordance between patient preferences and place of death. Methods: An inception cohort of patients (n = 95) with advanced, progressive disease, expected to die within six months, were recruited from three rural family physician group practices (21 physicians) and followed prospectively until death or pilot end. Serial measurement of symptoms, emotional distress (patient and family), and preferences for place of death was performed, with analysis of changes in distress outcomes assessed using t-tests and general linear models. Results: Symptoms trended toward improvement, with a significant reduction in anxiety from baseline to 14 days noted. Symptom and emotional distress were maintained below high severity (7-10), and a high rate of home death compared with population norms was observed. Conclusion: Future controlled studies are needed to examine outcomes for shared care models with comparison groups. Shared care models build on family physician capacity and as such are promising in the development of palliative home care programs to improve access to quality palliative home care and foster health system integration. © 2011 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

Enhancing family physician capacity to deliver quality palliative home care:An end-of-life, shared-care model

PROBLEM BEING ADDRESSED: Family physicians face innumerable challenges to delivering quality palliative home care to meet the complex needs of end-of-life patients and their families. OBJECTIVE OF PROGRAM: To implement a model of shared care to enhance family physicians' ability to deliver quality palliative home care, particularly in a community-based setting. PROGRAM DESCRIPTION: Family physicians in 3 group practices (N = 21) in Ontario's Niagara West region collaborated with an interprofessional palliative care team (including a palliative care advanced practice nurse, a palliative medicine physician, a bereavement counselor, a psychosocial-spiritual advisor, and a case manager) in a shared-care partnership to provide comprehensive palliative home care. Key features of the program included systematic and timely identification of end-of-life patients, needs assessments, symptom and psychosocial support interventions, regular communication between team members, and coordinated care guided by outcome-based assessment in the home. In addition, educational initiatives were provided to enhance family physicians' knowledge and skills. CONCLUSION: Because of the program, participants reported improved communication, effective interprofessional collaboration, and the capacity to deliver palliative home care, 24 hours a day, 7 days a week, to end-of-life patients in the community.

Prevalence and risk factors of depressive symptoms in a Canadian palliative home care population: a cross-sectional study

Background: Depression in palliative care patients is important because of its intrinsic burden and association with elevated physical symptoms, reduced immunity and increased mortality risk. Identifying risk factors associated with depression can enable clinicians to more readily diagnose it, which is important since depression is treatable. The purpose of this cross-sectional study was to determine the prevalence of depressive symptoms and risk factors associated with them in a large sample of palliative home care patients.

Methods: The data come from interRAI Palliative Care assessments completed between 2006 and 2012. The sample (n = 5144) consists of adults residing in Ontario (Canada), receiving home care services, classified as palliative, and not experiencing significant cognitive impairment. Logistic regression identified the risk factors associated with depressive symptoms. The dependent variable was the Depression Rating Scale (DRS) and the independent variables were functional indicators from the interRAI assessment and other variables identified in the literature. We examined the results of the complete case and multiple imputation analyses, and found them to be similar.

Results: The prevalence of depressive symptoms was 9.8%. The risk factors associated with depressive symptoms were (pooled estimates, multiple imputation): low life satisfaction (OR = 3.01 [CI = 2.37-3.82]), severe and moderate sleep disorders (2.56 [2.05-3.19] and 1.56 [1.18-2.06]), health instability (2.12 [1.42-3.18]), caregiver distress 2.01 [1.62-2.51]), daily pain (1.73 [1.35-2.22]), cognitive impairment (1.45 [1.13-1.87]), being female (1.37 [1.11-1.68]), and gastrointestinal symptoms (1.27 [1.03-1.55]). Life satisfaction mediated the effect of prognostic awareness on depressive symptoms.

Conclusions: The prevalence of depressive symptoms in our study was close to the median of 10-20% reported in the palliative care literature, suggesting they are present but by no means inevitable in palliative patients. Most of the factors associated with depressive symptoms in our study are amenable to clinical intervention and often targeted in palliative care programs. Designing interventions to address them can be challenging, however, requiring careful attention to patient preferences, the spectrum of comorbid conditions they face, and their social supports. Life satisfaction was one of the strongest factors associated with depressive symptoms in our study, and is likely to be among the most challenging to address.

Home care service utilization in British Columbia: Substitute or complement to acute care?

The desire to promote efficient allocation of health resources and effective patient care has focused attention on home care as an alternative to acute hospital service. in particular, clinical home care is suggested as a substitute for the final days of hospital stay. This dissertation evaluates the relationship between hospital and home care services for residents of British Columbia, Canada beginning in 1993/94 using data from the British Columbia Linked Health database. ^ Lengths of stay for patients referred to home care following hospital discharge are compared to those for patients not referred to home care. Ordinary least squares regression analysis adjusts for age, gender, admission severity, comorbidity, complications, income, and other patient, physician, and hospital characteristics. Home care clients tend to have longer stays in hospital than patients not referred to home care (β = 2.54, p = 0.0001). Longer hospital stays are evident for all home care client groups as well as both older and younger patients. Sensitivity analysis for referral time to direct care and extreme lengths of stay are consistent with these findings. Two stage regression analysis indicates that selection bias is not significant.^ Patients referred to clinical home care also have different health service utilization following discharge compared to patients not referred to home care. Home care nursing clients use more medical services to complement home care. Rehabilitation clients initially substitute home care for physiotherapy services but later are more likely to be admitted to residential care. All home care clients are more likely to be readmitted to hospital during the one year follow-up period. There is also a strong complementary association between direct care referral and homemaker support. Rehabilitation clients have a greater risk of dying during the year following discharge. ^ These results suggest that home care is currently used as a complement rather than a substitute for some acute health services. Organizational and resource issues may contribute to the longer stays by home care clients. Program planning and policies are required if home care is to provide an effective substitute for acute hospital days. ^

Paediatric palliative home care with Internet-based video-phones: lessons learnt

We have designed and tested an Internet-based video-phone suitable for use in the homes of families in need of paediatric palliative care services. The equipment uses an ordinary telephone line and includes a PC, Web camera and modem housed in a custom-made box. In initial field testing, six clinical consultations were conducted in a one-month trial of the videophone with a family in receipt of palliative care services who were living in the outer suburbs of Brisbane. Problems with variability in call quality-namely audio and video freezing, and audio break-up-prompted further laboratory testing. We completed a programme of over 250 test calls. Fixing modem connection parameters to use the V.34 modulation protocol at a set bandwidth of 24 kbit/s improved connection stability and the reliability of the video-phone. In subsequent field testing 47 of 50 calls (94%) connected without problems. The freezes that did occur were brief (with greatly reduced packet loss) and had little effect on the ability to communicate, unlike the problems arising in the home testing. The low-bandwidth Internet-based video-phone we have developed provides a feasible means of doing telemedicine in the home.

Emerging of human factor in risk analysis of home care service

Risk management in healthcare represents a group of various complex actions, implemented to improve the quality of healthcare services and guarantee the patients safety. Risks cannot be eliminated, but it can be controlled with different risk assessment methods derived from industrial applications and among these the Failure Mode Effect and Criticality Analysis (FMECA) is a largely used methodology. The main purpose of this work is the analysis of failure modes of the Home Care (HC) service provided by local healthcare unit of Naples (ASL NA1) to focus attention on human and non human factors according to the organization framework selected by WHO. © Springer International Publishing Switzerland 2014.

Resource utilisation and costs of palliative cancer care in an interdisciplinary health care model

This paper presents a detailed description of health care resource utilisation and costs of a pilot interdisciplinary health care model of palliative home care in Ontario, Canada. The descriptive evaluation entailed examining the use of services and costs of the pilot program: patient demographics, length of stay broken down by disposition (discharged, alive, death), access to services/resources, use of family physician and specialist services, and drug use. There were 434 patients included in the pilot program. Total costs were approximately CAN$2.4 million, and the cost per person amounted to approximately CAN$5586.33 with average length of stay equal to over 2 months (64.22 days). One may assume that length of stay would be influenced by the amount of service and support available. Future research might investigate whether in-home palliative home care is the most cost effective and suitable care setting for those patients requiring home care services for expected periods of time. © 2009 SAGE Publications.

Resource utilization and cost analyses of home-based palliative care service provision:The Niagara West End-of-Life Shared-Care Project

Background: Increasing emphasis is being placed on the economics of health care service delivery - including home-based palliative care. Aim: This paper analyzes resource utilization and costs of a shared-care demonstration project in rural Ontario (Canada) from the public health care system's perspective. Design: To provide enhanced end-of-life care, the shared-care approach ensured exchange of expertise and knowledge and coordination of services in line with the understood goals of care. Resource utilization and costs were tracked over the 15 month study period from January 2005 to March 2006. Results: Of the 95 study participants (average age 71 years), 83 had a cancer diagnosis (87%); the non-cancer diagnoses (12 patients, 13%) included mainly advanced heart diseases and COPD. Community Care Access Centre and Enhanced Palliative Care Team-based homemaking and specialized nursing services were the most frequented offerings, followed by equipment/transportation services and palliative care consults for pain and symptom management. Total costs for all patient-related services (in 2007 CAN) were 1,625,658.07 - or 17,112.19 per patient/117.95 per patient day. Conclusion: While higher than expenditures previously reported for a cancer-only population in an urban Ontario setting, the costs were still within the parameters of the US Medicare Hospice Benefits, on a par with the per diem funding assigned for long-term care homes and lower than both average alternate level of care and hospital costs within the Province of Ontario. The study results may assist service planners in the appropriate allocation of resources and service packaging to meet the complex needs of palliative care populations. © 2012 The Author(s).

Using videotelephony to support paediatric oncology-related palliative care in the home : from abandoned RCT to acceptability study

Videotelephony (real-time audio-visual communication) has been used successfully in adult palliative home care. This paper describes two attempts to complete an RCT (both of which were abandoned following difficulties with family recruitment), designed to investigate the use of videotelephony with families receiving palliative care from a tertiary paediatric oncology service in Brisbane, Australia. To investigate whether providing videotelephone-based support was acceptable to these families, a 12-month non-randomised acceptability trial was completed. Seventeen palliative care families were offered access to a videotelephone support service in addition to the 24 hours ‘on-call’ service already offered. A 92% participation rate in this study provided some reassurance that the use of videotelephones themselves was not a factor in poor RCT participation rates. The next phase of research is to investigate the integration of videotelephone-based support from the time of diagnosis, through outpatient care and support, and for palliative care rather than for palliative care in isolation

Improving national hospice/palliative care service symptom outcomes systematically through point-of-care data collection, structured feedback and benchmarking

PURPOSE Every health care sector including hospice/palliative care needs to systematically improve services using patient-defined outcomes. Data from the national Australian Palliative Care Outcomes Collaboration aims to define whether hospice/palliative care patients' outcomes and the consistency of these outcomes have improved in the last 3 years. METHODS Data were analysed by clinical phase (stable, unstable, deteriorating, terminal). Patient-level data included the Symptom Assessment Scale and the Palliative Care Problem Severity Score. Nationally collected point-of-care data were anchored for the period July-December 2008 and subsequently compared to this baseline in six 6-month reporting cycles for all services that submitted data in every time period (n = 30) using individual longitudinal multi-level random coefficient models. RESULTS Data were analysed for 19,747 patients (46 % female; 85 % cancer; 27,928 episodes of care; 65,463 phases). There were significant improvements across all domains (symptom control, family care, psychological and spiritual care) except pain. Simultaneously, the interquartile ranges decreased, jointly indicating that better and more consistent patient outcomes were being achieved. CONCLUSION These are the first national hospice/palliative care symptom control performance data to demonstrate improvements in clinical outcomes at a service level as a result of routine data collection and systematic feedback.