Palliative Care Sector Research Articles

National Home Care Initiative in Jordan: A Demonstration Project

Background and context: The home healthcare market in Jordan is nascent with little service offered. It suffers from a highly fragmented and underregulated landscape. The limited access to qualified trustworthy home care services, lack of professional home care training, and lack of home health care insurance coverage have added to the heavy in-patient bed demand and delayed hospital discharges especially for disabled or terminally ill patients. Aim: To establish a comprehensive national home care program to improve the delivery of palliative and home care services in Jordan, and to conduct a situational analysis and generate policy recommendations. Strategy/Tactics: We used multiple strategies to reach our objectives. 1. Expansion of home care services at King Hussein Cancer Center (KHCC) to create a local demonstration project. 2. Building health care professional capacity by offering variety of educational programs. 3. Improving quality of service delivery by generating clinical practice guidelines, such as standards operating procedures and patient and family educational materials. 4. Use the pilot operational and financial data to generate an economic model to inform the development of similar home health care units in hospitals across Jordan. 5. National advocacy and building effective partnership with all related stakeholders to advance national policy. Program/Policy process: Between May 2016 and May 2017, 7818 home care visits were conducted by KHCC. For capacity building; 678 health care professionals were trained in palliative and home care, out of which 366 participants were females (54%). Palliative care was successfully recognized as a specialty by the Jordan Nursing Council and recognized as a subspecialty by the Jordan Medical Council. The palliative and home care standards of practice were included in the health care accreditation council. The analysis of economic evaluation data suggested that home care services decreased in-patient utilization and costs which is advantageous to a country with limited resources. As a result of the advocacy stream and a collaborative network, the national palliative and home care strategic framework was generated, and endorsed by the Ministry of Health. Outcomes: The NHCI resulted in a very successful pilot project and achieved specialty and subspecialty recognition. Furthermore, we were able to build the capacity of health care professionals and policy makers in the palliative and home care sector from public, private and academic institutions. In the advocacy and policy dimension, the Minister of Health officially approved and adapted the palliative and home care strategic framework that was developed by this initiative. What was learned: Cross-sector collaboration and effective partnership resulted in system change and policy advancement. Developing effective economic systems is essential in low resourced countries. The initiative was supported by a joint grant from the USAID and KHCC.

Access to palliative care by disease trajectory: a population-based cohort of Ontario decedents

ObjectivesTo examine access to palliative care between different disease trajectories and compare to other geographic areas.DesignA retrospective population-based decedent cohort study using linked administrative data.SettingOntario, Canada.ParticipantsOntario decedents between 1 April...

Communication disorders in palliative care: investigating the views, attitudes and beliefs of speech and language therapists.

Speech and language therapists (SLTs) provide intervention for communication and swallowing to patients with life-limiting conditions, such as dementia and head and neck cancer. The role of the SLT in palliative care is difficult to define. Much is known about the clinical aspects of this role; however, little is known about the core values, beliefs and expectations of SLTs working in this sector, particularly with regard to their role in supporting patients' communication. Through a series of semi-structured interviews and a follow-up focus group, this report aimed to form a picture of the experiences and views of SLTs about their communication role in palliative care. Results suggest that SLTs are forging a self-identity in a sector that is itself constantly evolving, which causes difficulties in defining their role. Participants report that other health professionals have a poor understanding of the SLT's role. SLTs may benefit from palliative care-specific guidelines and increased interprofessional awareness of their role in order to become better integrated into the palliative care sector.

The experience of providing end of life care at a children\u2019s hospice: a qualitative study

BackgroundMore attention is being paid to the wellbeing of staff working in stressful situations. However, little is known about staff experience of providing end-of-life care to children within a hospice setting. This study aims to explore the experiences of care team staff who provide end-of-life care within a children’s hospice.MethodsQualitative research incorporating interviews and a focus group. Data were analysed using thematic analysis. Purposeful sampling led to a total of 15 care team staff recruited from a children’s hospice offering palliative and specialist care to life-limited children and young people.ResultsThe hospice setting provides a model of excellence in supporting staff and mitigating challenging aspects of their role, which includes peer/organisational support, and regular ongoing training in key aspects of children’s palliative care. Key recommendations for improving their experience included advanced communication training and knowledge sharing with other children’s palliative care specialists within the acute setting.ConclusionsService and policy initiatives should encourage open, informal peer/organisational support among the wider children’s palliative care sector. Further research should focus on paediatric palliative care education, particularly in relation to symptom management and communication at end-of-life, harnessing the expertise and breadth of knowledge that could be shared between children’s hospices and hospital settings.

The Importance of a Multidisciplinary Clinical Evaluation in Palliative Care: Two Clinical Cases with Bone Fracture

Background: Palliative and oncology units should work in a multidisciplinary organization, this being the best clinical practice actually known. Multidisciplinary osteo oncology units specialized in oncologic and palliative care with the capacity for taking critical decisions is really something new in our clinical practice. Nevertheless, the oncologic patient’s approach, under palliative strategy and with a bone fracture is not always straightforward, as it requires complex decision-making that demand a multidisciplinary engagement. Case study: We present different clinical cases where we explain how we are working in taking critical decisions in palliative care breast patients with bone fracture. In the last decades, in Portugal, there has been a change of the paradigm, in which medical oncology is concerned. It has been taking over a role each time more predominant in the clinical dynamics, serving as a connecting link among the different fields. The integration of palliative care in medical oncology practice, contributes to an improvement of the patients’ quality of life and survival. Nonetheless, it should be based upon the medical evidence. The critical decision in palliative care imposes a profound reflection as it has a real impact, which cannot be underestimated. Therefore, it is important its discussion within the team, taking into consideration the patient’s global vision and the real knowledge of the technical capacities in the hospital where the patient sought treatment. We still consider that the maintenance of the patient’s contact with the hospital, physicians and medical oncology assistants, assumes a fundamental character, which reinforces its importance in the palliative care sector. Conclusion: The different therapeutic options provided for the patients want to fulfill the purpose of improving their quality of life and survival. However, they only became achievable through the multidisciplinary evaluation carried out in a clinical context, which forces us to emphasize its crucial character, not only in the clinical approach of the oncological patients as well as those who are selected for palliative care.

Analysis of Palliative Care Process through SAP-LAP Inquiry: Case Study on Palliative Care and Training Centre

‘Palliative care’, a branch of medicine, aims to alleviate pain and enhance quality of life in the patient suffering from life-threatening illnesses. In addition to regular curative treatment for the patient, it also provides bereavement support to the family thereafter. Search for exhaustive literature on palliative care initiatives and current status in India confirms a dearth for nationwide awareness as well as published literature concerning the performance of palliative care units. While only few institutions are involved in disseminating palliative care initiatives, the services are quite limited, demanding a need to consider this topic holistically. Conclusively, palliative care should address every aspect of health care and support to the ailing patient and their family members. The purpose of this paper is to analyse the palliative care process adopted by the case institution, i.e. a renowned Palliative Care and Training Centre (PCTC-1) in India, to discuss the palliative care initiatives and their performance outcomes. A situation–actor–process and learning–action–performance (SAP-LAP) model of inquiry has been applied for the case study (PCTC-1). It considers the present operations of the centre and actors as participants influencing the situation through different processes. Several pertinent issues leading to actions have been analysed, which have considerable impact on the delivery of palliative care services. Responses elicited through in-depth interviews with the actors form the basis of primary data along with the published secondary sources. PCTC-1 has undertaken numerous initiatives such as ‘care beyond cure’, ‘wearing smiles’ and rendering health care at the centre as well as homes. Issues related to spreading awareness and holistic services on palliative care demands priority. The government national healthcare system needs to include palliative care as a core programme for people inclusion. Presently, palliative care services in India are negligible, and people lack awareness about it. This study uses SAP-LAP inquiry as a novel approach, which attempts to analyse and synthesise the processes holistically in a single study on the performance of palliative care services rendered only by the case organisation (PCTC-1). The findings of this study could be widely used for managerial problem-solving experienced by other palliative care centres. Further empirical tests can be undertaken in the palliative care sector for deriving deeper linkages in the model.

Does the Culture of Modern Day Palliative Care Social Work Leave Room for Leadership?

This paper describes research undertaken as part of an MA study in leadership. It draws on interviews with six high profile leaders at the fore front of end of life care sector in the UK. Its findings and emerging themes offer insights about the opportunities for social work leaders in palliative care in the future and how the profession and palliative care sector address current barriers to taking advantage of such opportunity. The main focus of this paper is leadership related to palliative care social work. However, it relates to much broader themes including the history, politics and culture of this profession and the requirements for leadership on the part of social work in the broader contexts of health and social care.

Outcomes from applying a Palliative Care Satisfaction Survey Instrument in Victoria, Australia

Background: Attempts to develop tools to measure client satisfaction in the palliative care sector have identified a number of challenges, including the lack of common definition of ‘satisfaction’. This paper reports on the utilization of the Victorian Palliative Care Satisfaction Instrument (VPCSI) in three Victoria-wide surveys over three years, of patient and carer satisfaction with palliative care provision.Aim: The VPCSI aimed to both meet the Australian Government performance indicator reporting and facilitate quality improvement for palliative care services.Setting/participants: All palliative services receiving funding from the Victorian Department of Health were invited to participate. Feedback via survey was captured from adult patients, carers, and bereaved carers in both inpatient and community palliative care settings.Results: Overall state-wide response rates averaged 26% over the three-year trial period. Satisfaction state-wide rated very high, ranging from 66% for patients to 74% for bereaved carers. Top five items given priority to improve varied across respondent type but overall included opportunities to talk to other carers; activities to pass the time; minimizing financial burden and training for carers to perform specific care tasks. The top five rated items overall were level of respect shown as an individual; nurse responses; expertise of staff; overall palliative care team performance; and support for physical care.Conclusion: These data demonstrate that the VPCSI is an important tool for the collection of consumer satisfaction data in the palliative care sector across a wide range of service providers.

Toward a systematic approach to assessment and care planning in palliative care: A practical review of clinical tools.

Ensuring a consistent and systematic approach to the delivery of care for people with advanced disease is a priority for palliative care services worldwide. Many clinical tools are available to aid in this process; however, they are often used sporadically, and implementation of a routine set of clinical tools to guide care planning in the specialist palliative care sector in Australia has not been achieved. This study sought to recommend key clinical tools that may assist with the assessment and care planning of specialist palliative care provision for patients and family caregivers admitted to specialist palliative care settings (home, hospital, and hospice). A mixed-methods sequential approach over four phases was employed, involving: (1) a palliative care sector survey, (2) a systematic literature review, (3) an appraisal of identified clinical tools, and (4) a focus group with an expert panel who critiqued and endorsed a final suite of clinical tools recommended for specialist palliative care. Twelve tools with practical relevance were recommended for use across settings of care. Palliative services should review current practices and seek to implement this recommended suite of tools to enhance assessment and guide care delivery across care settings. Subsequent evaluation should also occur.

A Clinical Scholarship Program to improve capacity among palliative care health professionals in Victoria, Australia

Over the past two decades in Australia, there has been significant change in the palliative care sector, the profile of the workforce and its educational requirements. This is reflective of worldwide developments, where educational aspects of palliative care have been integral to the development of service models. This paper describes a project undertaken by the Department of Health in Victoria Australia, to redirect its educational funding towards clinical scholarships to enable clinicians to undertake postgraduate academic studies. The aim of this project was to assess the impact of the Clinical Scholarship Program funding for recipients who undertook postgraduate studies in palliative care. As part of quality assurance, an online survey was distributed to Scholarship recipients across 2 cohorts spanning the years 2008–2010. Recipients were surveyed for the impact and outcomes of their participation in the program. Twenty one-year scholarships for each year (2008–2010), were available to medical, nursing, and allied health professionals currently working in Victoria's public palliative care service system, undertaking postgraduate study in approved courses. Analysis of the data indicated that of most significance was the benefit to the individual, in terms of the impact of study on their professional and personal life and the low rates of employment turnover. Participants also indicated their improved capacity to provide high-quality palliative care services. For the Department of Health this small investment has demonstrated great benefit; and for the palliative care sector it achieved a significant impact enabling an increase in educational opportunities to enhance capacity and capability of the workforce.

Distributed agency and emergence of an organizational field

We draw on an in-depth qualitative study of the palliative care sector in Kerala, India in order to develop a model of field emergence that links situated, everyday activities of individuals to mac...

The importance of robust children's palliative care: now and the future

Together for Short Lives is committed to collecting information from its members in order to support the development of services across the sector to meet the needs of children and young people with life-limiting conditions. Since 2009, Durham University Mapping Team has collaborated with Children9s Hospices UK (Formerly ACT and Children9s Hospices UK) in developing more efficient ways of collecting data. Aims To increase national information about young people with life limiting conditions ▶Identify the types and gaps in service provision ▶Identify the number of young people with life limiting conditions and the number of deaths in children9s hospices ▶Provide interactive geographical data maps to visually represent the services. Methods Durham University Mapping Team developed an online data collection system for reporting children9s services in 2002 and a feasibility data collection was carried out in 2009/10 for children9s hospices. The evaluation informed the 2010/11 data collection. The 2010/11 data collection involved each hospice registering with Durham University. Each hospice completed a questionnaire. Online reports were completed, summarising key data. Results In 2010-2011, information was submitted by all 35 children9s hospice providers in the UK (Total=46 services). These included: ▶45 services supported 7,101 young people with life-limited conditions; ▶28 services provided information using ACT diagnostic categories: (N= 4,458 children and young people).40% were reported in category 4;33% in category 3;14% in category 1;12% in category 2. ▶40 services (N=6,203) provided a breakdown of children and young people supported by age and gender. 35% of the young people were age 5-11 years. Males represented 57% ▶40% of 729 deaths happened in hospital (N= 45 services). Conclusion There is a recognised need for consistent data across the children9s palliative care sector. Together for Short Lives (Formerly ACT and Children9s Hospices UK) with Durham University will continue to collect data in 2011/12 using ICD 10 codes to: ▶Identify gaps in services across the children9s palliative care sector ▶Inform the Independent Funding Review Pilot work and service planning nationally. See figure 1 Geo map: Hospice services provided on a 24/7 basis Other interactive maps available include: ▶Children, families and siblings supported; ▶Hospice services provided in hospice settings; ▶Hospice services provided in hospital settings; ▶Hospice services provided in home settings; ▶Bereavement support for parents; ▶Bereavement support for siblings; ▶Bereavement support for the extended family. The map below shows the services that reported they provided at least one type of service on a 24/7 basis.

Current Funding and Financing Issues in the Australian Hospice and Palliative Care Sector

This article overviews current funding and financing issues in the Australian hospice and palliative care sector. Within Australia, the major responsibilities for managing the health care system are shared between two levels of government. Funding arrangements vary according to the type of care. The delivery of palliative care services is a State/Territory responsibility. Recently, almost all States/Territories have developed overarching frameworks to guide the development of palliative care policies, including funding and service delivery structures. Palliative care services in Australia comprise a mix of specialist providers, generalist providers, and support services in the public, nongovernment, and private sectors. The National Palliative Care Strategy is a joint strategy of the Commonwealth and States that commenced in 2002 and includes a number of major issues. Following a national study in 1996, the Australian National Subacute and Nonacute Patient (AN-SNAP) system was endorsed as the national casemix classification for subacute and nonacute care. Funding for palliative care services varies depending on the type of service and the setting in which it is provided. There is no national model for funding inpatient or community services, which is a State/Territory responsibility. A summary of funding arrangements is provided in this article. Palliative care continues to evolve at a rapid rate in Australia. Increasingly flexible evidence-based models of care delivery are emerging. This article argues that it will be critical for equally flexible funding and financing models to be developed. Furthermore, it is critical that palliative care patients can be identified, classified, and costed. Casemix classifications such as AN-SNAP represent an important starting point but further work is required.

A means to an end: a web-based client management system in palliative care

Home-based palliative care (hospice) services require comprehensive and fully integrated information systems to develop and manage the various aspects of their business, incorporating client data and management information. These systems assist in maintaining the quality of client care as well as improved management efficiencies. This article reports on a large not-for-profit home-based palliative care service in Australia, which embarked on a project to develop an electronic data management system specifically designed to meet the needs of the palliative care sector. This web-based client information management system represents a joint venture between the organization and a commercial company and has been a very successful project.

Improving generalist end of life care: national consultation with practitioners, commissioners, academics, and service user groups

Objective To identify major concerns of national and local importance in the provision, commissioning, research, and use of generalist end of life care.Design A national consultation and prioritising exercise using...

The dying child: how is care different?

Of children needing palliative care, less than half have a malignancy. Most families will elect to care for their child at home if this is offered as a realistic option. The often protracted and unpredictable nature of the many illness trajectories encountered in paediatric palliative care requires an approach that integrates palliative care with curative care. Children bring added dimensions to the physical, psychosocial and ethical aspects of palliative care. Health professionals from both paediatric and palliative care sectors have skills and knowledge to bring to palliative care of the child.