The experiences of palliative care health service provision for people with non-malignant respiratory disease and their caregivers: an all-Ireland study

Aim: To explore the perception of palliative care provision for people with non-malignant respiratory disease from the perspective of bereaved caregivers.

Background: It is recognized that the majority of patients diagnosed with a malignant disease will have access to palliative care provision. However, it is less clear if the same standards of palliative care are available to those with non-malignant respiratory disease in Northern Ireland and the Republic of Ireland.

Design: A qualitative study based on broad interpretivism.

Methods: This research is a PhD study funded by the Department of Education and Learning in Northern Ireland (awarded February 2011). Data collection will consist of two stages; interviews with 20 bereaved caregivers of people who have died 3–18 months previously with a diagnosis of non-malignant respiratory disease and four focus groups with healthcare professionals involved in the care of this client group. This study will be carried out at four healthcare sites across the Island of Ireland. The data will be analysed using thematic content analysis. Research Ethics committee approval was obtained (March 2012).

Discussion: This research will explore the experiences of patients with Chronic Obstructive Pulmonary Disease, Interstitial Lung Disease and Bronchiectasis and their caregivers from the perspective of the bereaved caregiver. The outcomes of this study will provide a critical first step in the development of more responsive palliative care for this client group and have important implications for future practice and policy in the palliative care provided to this client group.

Barriers to providing palliative care in long-term care facilities

OBJECTIVE: To assess challenges in providing palliative care in long-term care (LTC) facilities from the perspective of medical directors. DESIGN: Cross-sectional mailed survey. A questionnaire was developed, reviewed, pilot-tested, and sent to 450 medical directors representing 531 LTC facilities. Responses were rated on 2 different 5-point scales. Descriptive analyses were conducted on all responses. SETTING: All licensed LTC facilities in Ontario with designated medical directors. PARTICIPANTS: Medical directors in the facilities. MAIN OUTCOME MEASURES: Demographic and practice characteristics of physicians and facilities, importance of potential barriers to providing palliative care, strategies that could be helpful in providing palliative care, and the kind of training in palliative care respondents had received. RESULTS: Two hundred seventy-five medical directors (61%) representing 302 LTC facilities (57%) responded to the survey. Potential barriers to providing palliative care were clustered into 3 groups: facility staff's capacity to provide palliative care, education and support, and the need for external resources. Two thirds of respondents (67.1%) reported that inadequate staffing in their facilities was an important barrier to providing palliative care. Other barriers included inadequate financial reimbursement from the Ontario Health Insurance Program (58.5%), the heavy time commitment required (47.3%), and the lack of equipment in facilities (42.5%). No statistically significant relationship was found between geographic location or profit status of facilities and barriers to providing palliative care. Strategies respondents would use to improve provision of palliative care included continuing medical education (80.0%), protocols for assessing and monitoring pain (77.7%), finding ways to increase financial reimbursement for managing palliative care residents (72.1%), providing educational material for facility staff (70.7%), and providing practice guidelines related to assessing and managing palliative care patients (67.8%). CONCLUSION: Medical directors in our study reported that their LTC facilities were inadequately staffed and lacked equipment. The study also highlighted the specialized role of medical directors, who identified continuing medical education as a key strategy for improving provision of palliative care.

The spirit of palliative practice:A qualitative inquiry into the spiritual journey of palliative care physicians

Objective: Much is known about the important role of spirituality in the delivery of multidimensional care for patients at the end of life. Establishing a strong physician-patient relationship in a palliative context requires physicians to have the self-awareness essential to establishing shared meaning and relationships with their patients. However, little is known about this phenomenon and therefore, this study seeks a greater understanding of physician spirituality and how caring for the terminally ill influences this inner aspect. Method: A qualitative descriptive study was used involving face-to-face interviews with six practicing palliative care physicians. Results: Conceptualized as a separate entity from religion, spirituality was described by participants as a notion relating to meaning, personal discovery, self-reflection, support, connectedness, and guidance. Spirituality and the delivery of care for the terminally ill appeared to be interrelated in a dynamic relationship where a physician's spiritual growth occurred as a result of patient interaction and that spiritual growth, in turn, was essential for providing compassionate care for the palliative patient. Spirituality also served as an influential force for physicians to engage in self-care practices. Significance of results: With spirituality as a pervasive force not only in the lives of palliative care patients, but also in those of healthcare providers, it may prove to be beneficial to use this information to guide future practice in training and education for palliative physicians in both the spiritual care of patients and in practitioner self care. Copyright © Cambridge University Press 2010.

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).

A proposed systems approach to the evaluation of integrated palliative care

Background. There is increasing global interest in regional palliative care networks (PCN) to integrate care, creating systems that are more cost-effective and responsive in multi-agency settings. Networks are particularly relevant where different professional skill sets are required to serve the broad spectrum of end-of-life needs. We propose a comprehensive framework for evaluating PCNs, focusing on the nature and extent of inter-professional collaboration, community readiness, and client-centred care. Methods. In the absence of an overarching structure for examining PCNs, a framework was developed based on previous models of health system evaluation, explicit theory, and the research literature relevant to PCN functioning. This research evidence was used to substantiate the choice of model factors. Results. The proposed framework takes a systems approach with system structure, process of care, and patient outcomes levels of consideration. Each factor represented makes an independent contribution to the description and assessment of the network. Conclusions. Realizing palliative patients' needs for complex packages of treatment and social support, in a seamless, cost-effective manner, are major drivers of the impetus for network-integrated care. The framework proposed is a first step to guide evaluation to inform the development of appropriate strategies to further promote collaboration within the PCN and, ultimately, optimal palliative care that meets patients' needs and expectations. © 2010 Bainbridge et al; licensee BioMed Central Ltd.

Nurses perceptions around providing palliative care for long-term care residents with dementia

Providing palliative care for residents with dementia in long-term care (LTC) settings is problematic due to their declining verbal abilities and related challenges. The goal of this study was to explore nurses' perceptions around providing palliative care for such residents. Using a qualitative descriptive design, data were gathered from focus groups at three LTC facilities. Participants represented all levels of nursing staff. Concepts that emerged from the data were labelled, categorized, and coded in an iterative manner. Nurses appraise residents' general deterioration as a main factor in deciding that a resident is palliative. Nurses often employ creative strategies using limited resources to facilitate care, but are challenged by environmental restrictions and insufficient educational preparation. However, nurses said they do not wish for residents to be transferred to a hospice setting, as they .wish to grieve with residents and their family members. Nurses aim to facilitate a "good death" for residents with dementia, while trying to manage multiple demands and deal with environmental issues. Supportive and educational initiatives are needed for nursing staff and families of dying residents. © 2007 Centre for Bioethics, IRCM.

Evaluating program integration and the rise in collaboration:Case study of a palliative care network

Introduction: There is increasing global interest in using regional palliative care networks (PCNs) to integrate care and create systems that are more costeffective and responsive. We examined a PCN that used a community development approach to build capacity for palliative care in each distinct community in a region of southern Ontario, Canada, with the goal of achieving a competent integrated system. Methods: Using a case study methodology, we examined a PCN at the structural level through a document review, a survey of 20 organizational administrators, and an interview with the network director. Results: The PCN identified 14 distinct communities at different stages of development within the region. Despite the lack of some key features that would facilitate efficient palliative care delivery across these communities, administrators largely viewed the network partnership as beneficial and collaborative. Conclusion: The PCN has attempted to recognize specific needs in each local area. Change Is gradual but participatory. There remain structural issues that may negatively affect the functioning of the PCN.

Palliative care nursing in rural and urban community settings:A comparative analysis

Nurses have key roles in the coordination and delivery of community-based palliative care. The purpose of this study was to examine the differences between rural and urban community nurses' delivery of palliative care services. A survey was distributed to 277 nurses employed by a community agency in Ontario, Canada, and a 60% response rate was obtained. Nurses reported spending 27% of their time providing palliative care. Rural and urban nurses had similar roles in palliative care but rural nurses spent more time travelling and were more confident in their ability to provide palliative care. Both groups of nurses reported moderate job satisfaction and moderate satisfaction with the level of interdisciplinary collaboration in their practice. Several barriers to and facilitators of optimal palliative care provision were identified. The study results provide information about the needs of nurses that practise in these settings and may provide a basis for the development of strategies to address these needs.

Managing palliative care for adults with advanced heart failure

The purpose of this study was to explore the care processes experienced by community-dwelling adults dying from advanced heart failure, their family caregivers, and their health-care providers. A descriptive qualitative design was used to guide data collection, analysis, and interpretation. The sample comprised 8 patients, 10 informal caregivers, 11 nurses, 3 physicians, and 3 pharmacists. Data analysis revealed that palliative care was influenced by unique contextual factors (i.e., cancer model of palliative care, limited access to resources, prognostication challenges). Patients described choosing interventions and living with fatigue, pain, shortness of breath, and functional decline. Family caregivers described surviving caregiver burden and drawing on their faith. Health professionals described their role as trying to coordinate care, building expertise, managing medications, and optimizing interprofessional collaboration. Participants strove towards 3 outcomes: effective symptom management, satisfaction with care, and a peaceful death. © McGill University School of Nursing.

Optimizing Research on End-of-Life Care for Seniors:The Collective New Emerging Team on End of Life Care for Seniors University of Ottawa, Institute of Palliative Care

Background: End-of-life care for seniors is an important and neglected area of research. The University of Ottawa Institute of Palliative Care has expanded its research capacity by developing a Canadian Institutes of Health Research (CIHR) funded new emerging team on end-of-life care for seniors. This initiative brings together an interdisciplinary team of researchers from palliative care and geriatrics to develop a comprehensive program of research. Methods: 1) A variety of investigators from the fields of palliative care and geriatrics and disciplines of epidemiology, medicine, nursing, psychology and social work will collaborate on the development of a research agenda focussed on end-of-life care for seniors. 2) The conceptual model for the research program consists of 4 broad interrelated domains that are congruent with the CIHR themes of health services, clinical issues, population health and psychosocial, cultural, spiritual and ethical issues; this framework will guide the research program and all studies emanating from the program. 3) Research studies will focus on 5 areas of inquiry that are central to end-of-life care for seniors: palliative end-of-life care for rural seniors, care settings, burden, role of volunteers, and delirium. Results: This new team has the potential to obtain peer-reviewed funding, recruit and train a new generation of researchers, and build a network of concerned researchers. Conclusions: The new team should ultimately contribute to an improved quality of care for seniors who are approaching death.

The palliative care link nurse role in nursing homes: barriers and facilitators

Aim. This paper is a report of a study to explore link nurses' views and experiences regarding the development, barriers and facilitators to the implementation of the role in palliative care in the nursing home.
Background. The delivery of palliative care in nursing homes is widely advocated; one approach is to develop the link nurse role to cascade good practice and training to nurses and other care staff to enhance patient care.
Method. A descriptive qualitative study was conducted with a purposive sample of 14 link nurses from 10 nursing homes in Northern Ireland during 2006. Three focus groups, composed of all Registered Nurses currently acting as link nurses in their nursing homes participated, and the data were audio recorded, fully transcribed and content analysed.
Findings. The link nurse system shows potential to enhance palliative care within nursing homes. However, link nurses experienced a number of difficulties in implementing education programmes. Facilitators of the role included external support, monthly meetings, access to a resource file and peer support among link nurses themselves. Lack of management support, a transient workforce and lack of adequate preparation for link nurses were barriers to fulfilling this role.
Conclusion. Whilst palliative care link nurses can improve care for residents in nursing homes, consideration must be given to overcome the types of barriers identified in order to enable the link nurse system to function effectively. © 2008 The Authors.