Hospice Palliative Care Services Research Articles

Clinical Experience of Nurses in a Consultative Hospice Palliative Care Service.

The purpose of this qualitative study was to employ Colaizzi's phenomenological research method to elucidate and understand the essence of practical experiences among consultative hospice palliative care nurses working in hospice institutions. The participants in the study were 15 consultative hospice palliative care nurses with over 1 year of work experience in institutions located in S City, I City, and K Province in South Korea. Data were collected from 23 in-depth interviews and analyzed using Colaizzi's phenomenological qualitative method. The practical experiences of consultative hospice palliative nurses were categorized into five categories, 10 theme clusters, and 25 themes. The five categories included "being aware of patients' situations at the time of transition to hospice palliative care," "empathizing with patients and their families by putting oneself in the other's shoes," "providing patient and family-centered end-of-life care," "experiencing difficulties in practical tasks," and "striving to improve hospice service quality." This study is significant in that it provides practical data for understanding the experiences of consultative hospice palliative care nurses caring for terminally ill patients. This could enhance our understanding of care solutions that effectively tackle the challenges consultative hospice palliative care nurses encounter while fulfilling their roles.

Palliative medicine Master Classes for primary care: an evaluation.

Introduction General practitioners (GP) are key in the delivery of primary palliative care in the community, so appropriate knowledge and skills are needed. Previous research has suggested there may be gaps in training opportunities. Aims To develop and evaluate a Master Class series presented by a hospice palliative care service to their local GPs and other health-care professionals. A secondary aim was to measure the lasting impacts of the educational intervention. Methods The study setting was the Canterbury region of Aotearoa New Zealand (NZ). GPs and other health-care professionals were surveyed using a research team-designed questionnaire rating self confidence in the nominated learning objectives before and after the Master Classes. The participants were also asked to self-rate the application of the knowledge to their practice 3 years after the Master Class sessions were attended. Results There were 56 sets of questionnaires completed. The participants tended to be experienced female GPs with a range of palliative care patients in their practice. There was significant improvement in most learning outcomes across the Master Classes series. The attendees reported the Master Classes were relevant and clear, with useful resources. The improvements in the learning outcomes were largely sustained over 3 years. Discussion The provision of palliative care education that aligns with clinical practice improves knowledge, skills and confidence in GPs who provide most of the end-of-life care in New Zealand.

Prognostic models of survival in patients with advanced incurable cancer: the PiPS2 observational study.

The Prognosis in Palliative care Study (PiPS) prognostic survival models predict survival in patients with incurable cancer. PiPS-A (Prognosis in Palliative care Study - All), which involved clinical observations only, and PiPS-B (Prognosis in Palliative care Study - Blood), which additionally required blood test results, consist of 14- and 56-day models that combine to create survival risk categories: 'days', 'weeks' and 'months+'. The primary objectives were to compare PIPS-B risk categories against agreed multiprofessional estimates of survival and to validate PiPS-A and PiPS-B. The secondary objectives were to validate other prognostic models, to assess the acceptability of the models to patients, carers and health-care professionals and to identify barriers to and facilitators of clinical use. This was a national, multicentre, prospective, observational, cohort study with a nested qualitative substudy using interviews with patients, carers and health-care professionals. Community, hospital and hospice palliative care services across England and Wales. For the validation study, the participants were adults with incurable cancer, with or without capacity to consent, who had been recently referred to palliative care services and had sufficient English language. For the qualitative substudy, a subset of participants in the validation study took part, along with informal carers, patients who declined to participate in the main study and health-care professionals. For the validation study, the primary outcomes were survival, clinical prediction of survival and PiPS-B risk category predictions. The secondary outcomes were predictions of PiPS-A and other prognostic models. For the qualitative substudy, the main outcomes were participants' views about prognostication and the use of prognostic models. For the validation study, 1833 participants were recruited. PiPS-B risk categories were as accurate as agreed multiprofessional estimates of survival (61%; p = 0.851). Discrimination of the PiPS-B 14-day model (c-statistic 0.837, 95% confidence interval 0.810 to 0.863) and the PiPS-B 56-day model (c-statistic 0.810, 95% confidence interval 0.788 to 0.832) was excellent. The PiPS-B 14-day model showed some overfitting (calibration in the large -0.202, 95% confidence interval -0.364 to -0.039; calibration slope 0.840, 95% confidence interval 0.730 to 0.950). The PiPS-B 56-day model was well-calibrated (calibration in the large 0.152, 95% confidence interval 0.030 to 0.273; calibration slope 0.914, 95% confidence interval 0.808 to 1.02). PiPS-A risk categories were less accurate than agreed multiprofessional estimates of survival (p < 0.001). The PiPS-A 14-day model (c-statistic 0.825, 95% confidence interval 0.803 to 0.848; calibration in the large -0.037, 95% confidence interval -0.168 to 0.095; calibration slope 0.981, 95% confidence interval 0.872 to 1.09) and the PiPS-A 56-day model (c-statistic 0.776, 95% confidence interval 0.755 to 0.797; calibration in the large 0.109, 95% confidence interval 0.002 to 0.215; calibration slope 0.946, 95% confidence interval 0.842 to 1.05) had excellent or reasonably good discrimination and calibration. Other prognostic models were also validated. Where comparisons were possible, the other prognostic models performed less well than PiPS-B. For the qualitative substudy, 32 health-care professionals, 29 patients and 20 carers were interviewed. The majority of patients and carers expressed a desire for prognostic information and said that PiPS could be helpful. Health-care professionals said that PiPS was user friendly and may be helpful for decision-making and care-planning. The need for a blood test for PiPS-B was considered a limitation. The results may not be generalisable to other populations. PiPS-B risk categories are as accurate as agreed multiprofessional estimates of survival. PiPS-A categories are less accurate. Patients, carers and health-care professionals regard PiPS as potentially helpful in clinical practice. A study to evaluate the impact of introducing PiPS into routine clinical practice is needed. Current Controlled Trials ISRCTN13688211. This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 25, No. 28. See the NIHR Journals Library website for further project information.

The Prognosis in Palliative care Study II (PiPS2): A prospective observational validation study of a prognostic tool with an embedded qualitative evaluation.

BackgroundPrognosis in Palliative care Study (PiPS) models predict survival probabilities in advanced cancer. PiPS-A (clinical observations only) and PiPS-B (additionally requiring blood results) consist of 14- and 56-day models (PiPS-A14; PiPS-A56; PiPS-B14; PiPS-B56) to create survival risk categories: days, weeks, months. The primary aim was to compare PIPS-B risk categories against agreed multi-professional estimates of survival (AMPES) and to validate PiPS-A and PiPS-B. Secondary aims were to assess acceptability of PiPS to patients, caregivers and health professionals (HPs).Methods and findingsA national, multi-centre, prospective, observational, cohort study with nested qualitative sub-study using interviews with patients, caregivers and HPs. Validation study participants were adults with incurable cancer; with or without capacity; recently referred to community, hospital and hospice palliative care services across England and Wales. Sub-study participants were patients, caregivers and HPs. 1833 participants were recruited. PiPS-B risk categories were as accurate as AMPES [PiPS-B accuracy (910/1484; 61%); AMPES (914/1484; 61%); p = 0.851]. PiPS-B14 discrimination (C-statistic 0.837) and PiPS-B56 (0.810) were excellent. PiPS-B14 predictions were too high in the 57–74% risk group (Calibration-in-the-large [CiL] -0.202; Calibration slope [CS] 0.840). PiPS-B56 was well-calibrated (CiL 0.152; CS 0.914). PiPS-A risk categories were less accurate than AMPES (p<0.001). PiPS-A14 (C-statistic 0.825; CiL -0.037; CS 0.981) and PiPS-A56 (C-statistic 0.776; CiL 0.109; CS 0.946) had excellent or reasonably good discrimination and calibration. Interviewed patients (n = 29) and caregivers (n = 20) wanted prognostic information and considered that PiPS may aid communication. HPs (n = 32) found PiPS user-friendly and considered risk categories potentially helpful for decision-making. The need for a blood test for PiPS-B was considered a limitation.ConclusionsPiPS-B risk categories are as accurate as AMPES made by experienced doctors and nurses. PiPS-A categories are less accurate. Patients, carers and HPs regard PiPS as potentially helpful in clinical practice.Study registrationISRCTN13688211.

Comparison of The Hospice Palliative Care Delivery Systems in Iran and Selected Countries

Background: There is an increasing demand for Hospice Palliative Care (HPC) due to the aging population, increased incidence of cancer, and other chronic diseases, as well as recent advances in care and treatment. Objectives: The present study was conducted to examine the nature and structure of HPC services and to describe and compare them in the United Kingdom (UK), Canada, Australia, Japan, India, Jordan, and Iran to extract general conclusions and suggestions for developing HPC systems in Iran. Methods: In the current descriptive-comparative study, from 2018 to 2019, HPC delivery systems in the selected countries and Iran were reviewed based on the World Health Organization (WHO) guideline, and the similarities and differences among them were explained. Results: Developing the National HPC Program and its integration into the health system are important activities. The most common source of financing is donation. The services are mainly provided to patients with cancer. Human resource development includes curriculum reform, creating specialty, subspecialty disciplines, and holding training courses. Other activities include designing national guidelines, the free access to opioids, research development, the establishment of the national information network, and the quality control programs. Iran lacks any formal structure and program of HPC services and they are provided in a scattered and very limited manner as part of general palliative services. Conclusions: HPC services are in a mediate and low level in developed countries and Iran, respectively. Before the establishment of the HPC delivery system, a complicated range of economic, social, cultural, and political factors must be considered.

Increasing Trend in Hospital Deaths Consistent among Older Decedents in Korea: A Population-based Study Using Death Registration Database, 2001\u20132014

BackgroundWith improvement in hospice palliative care services and long-term care, Republic of Korea (hereafter South Korea) has recorded significant changes in places of death (e.g., hospital, home), especially among older adults. Over the last few decades, the most common places of death in South Korea were hospitals. However, Koreans, especially older adults, reportedly prefer to receive terminal care and eventually die at home. This study was conducted to investigate trends in places of death among older Korean adults and factors associated therewith.MethodsData were obtained from the Korean Death Registration Database maintained by the National Statistical Office. Decedents who died after the age of 65 years from 2001 to 2014 were included in the analysis. For descriptive analysis, proportions of places of death were analyzed and were used to plot graphs for visualizing trends during 13-year period. Logistic regression model was used to evaluate factors associated with places of death (hospital versus home).ResultsTwo million three hundred fifty eight thousand two hundred eleven older adult decedents were included in final analysis. Hospitals were the most common places of death (57.82%), followed by homes (32.12%). Dying at social welfare facilities was rare (2.61%). A gradual increase in hospital deaths (31.38% in 2001 to 75.30% in 2014) and a subsequent decrease in home deaths (60.44% to 15.95% over the same period) were noted. Hospital deaths were more likely for younger patients (ORs 1.28, 95% CI 1.27-1.29), females (ORs 1.28, 95% CI 1.27-1.29), and single/divorced or widowed individuals (ORs 1.77, 1.49 and 1.03 respectively). A higher education level and living in urban areas were strongly associated with a higher likelihood of dying in a hospital.ConclusionOver the study period, there was a consistent increasing trend in hospital deaths in South Korea. Trends in place of death and factors associated therewith should be more intensely investigated and monitored. Resources and facilities should be increased to fulfill end-of-life care preferences and the needs of an increasingly older population in South Korea.

Hospice Palliative Care in South Korea: Past, Present, and Future

Hospice palliative care (HPC) in Korea has developed steadily since its introduction in 1965. Currently, HPC in Korea is targeted only towards terminal cancer patients and their families, and the national health insurance scheme covers only inpatient hospice care for said patients. In recent years, healthcare professionals and policy makers began to recognize the need for HPC services in diverse settings including outside hospital boundaries, and for all terminally-ill patients. A law on HPC passed in January 2016 allows terminally-ill patients to refuse life-sustaining treatments, and will likely facilitate further development of HPC services. It is critical for the government and all interested parties in the medical, academic and social sectors to collaborate to ensure its success once it takes effect in 2017. This article will briefly review the half-century history of HPC in Korea, and discuss how to prepare for and cope with death and, thereby, improve the quality of death.

Mapping Levels of Palliative Care Development: A Global Update

Our purpose is to categorize palliative care development, country by country, throughout the world, showing changes over time. We adopt a multi-method approach. Development is categorized using a six-part typology: Group 1 (no known hospice-palliative care activity) and Group 2 (capacity-building activity) are the same as developed during a previous study (2006), but Groups 3 and 4 have been subdivided to produce two additional levels of categorization: 3a) Isolated palliative care provision, 3b) Generalized palliative care provision, 4a) Countries where hospice-palliative care services are at a stage of preliminary integration into mainstream service provision, and 4b) Countries where hospice-palliative care services are at a stage of advanced integration into mainstream service provision. In 2011, 136 of the world's 234 countries (58%) had at least one palliative care service—an increase of 21 (+9%) from 2006, with the most significant gains having been made in Africa. Advanced integration of palliative care has been achieved in only 20 countries (8.5%). Total countries in each category are as follows: Group 1, 75 (32%); Group 2, 23 (10%); Group 3a, 74 (31.6%); Group 3b, 17 (7.3%); Group 4a, 25 (10.7%); and Group 4b, 20 (8.5%). Ratio of services to population among Group 4a/4b countries ranges from 1:34,000 (in Austria) to 1:8.5 million (in China); among Group 3a/3b countries, from 1:1000 (in Niue) to 1:90 million (in Pakistan). Although more than half of the world's countries have a palliative care service, many countries still have no provision, and major increases are needed before palliative care is generally accessible worldwide.

Cultural Competency and Diversity Among Hospice Palliative Care Volunteers

This case study examines the current state of cultural competence in hospice and palliative care in the Greater Toronto Area (GTA). Because of changing demographic trends and ethnic minorities underutilizing hospice palliative care services, this research examined the current state of culturally competent care in a hospice setting, and the challenges to providing culturally competent care in a hospice in the GTA. A case study was conducted with a hospice and included in-depth interviews with 14 hospice volunteers. The findings reveal that volunteers encountered cultural clashes when their level of cultural competency was weak. Second, volunteers revealed there was a lack of adequate cultural competency training with their hospice, and finally, there was a lack of ethnic, cultural, and linguistic diversity among the hospice volunteers.

Collaborative lymphoedema management: developing a clinical protocol

Lymphoedema is a very distressing chronic condition prevalent in some metastatic cancers. Conservative treatment of lymphoedema in palliative care involves complete/complex decongestive therapy (CDT) using manual lymphatic drainage (MLD), compression therapy (bandaging and/or garments), skincare, and remedial exercises, adapted to the needs of the patient. The aim of this service development project was to identify current practice in a hospice palliative care service, develop new assessment tools, and implement a collaborative clinical protocol to improve access to lymphoedema management for patients in the hospice. Two audits provided new evidence about patient profiles, patient assessment, and treatment outcomes for cancer- and non-cancer-related lymphoedema. This project had a quality-improvement effect on service delivery and developed an effective partnership approach to lymphoedema management between local district nursing services and the specialist lymphoedema physiotherapist.

Hospice Palliative Care Volunteers: A Unique Care Link

In this research, we endeavoured to gain a clearer understanding of what impact hospice palliative care (HPC) volunteers have on family caregivers and the underlying factors that contribute to this. We conducted ten face-to-face interviews with bereaved women who had previously provided care for their spouses and who used HPC volunteers. We checked our interpretation through a feedback focus group. Using a methodological hermeneutic approach, we came to understand the unique position HPC volunteers occupy within the formal health care system. Our constitutive organizing theme was manifest throughout the women's stories in seven thematic areas that explicate the dimensions of the overarching theme: the Unique Care Link. We identified seven themes that exemplify specific ways in which HPC volunteers have a positive impact on the lives of spousal caregivers. This knowledge can be incorporated into the further development of training and support programs for HPC volunteers, and to increase the quality of volunteer HPC services provided to family members.

A generative response to palliative service capacity in Canada

This paper situates a large-scale learning and service development capacity-building initiative for hospice palliative care services within the current Canadian policy context for use by international readers. In 2000 a national initiative using action research as its design was crafted to support continuing professional development and knowledge management in primary-health care environments. The Canadian health policy context is complex and requires innovative solutions to achieve desired changes in response to emerging population health demands for quality end-of-life care. Employment of educational and social science constructs, including complexity theory, communities of practice, transformative learning theory, and workplace learning methods, has proven helpful in supporting the creation of national capacity for hospice palliative care. There is a significant contribution for social scientists to make in aiding a better understanding of the complexity in health systems. At the same time, an aging population in industrial countries demands more active engagement of legal and bioethical scholars in a range of emerging policy and legislative questions about quality end-of-life care. Educational research is also required to understand better and reform curricula to prepare an emerging generation of health science practitioners for the demands of an aging population. Changing health service delivery environments demand rethinking of the knowledge and skills leaders require to influence desired change. A broader understanding of where and how learning takes place is essential for enhancing the quality of patient care. The Pallium Project represents a generative response to facilitating learning and building longer-term system capacity. The journey of project development to date illustrates some important lessons that can be adopted from hospice palliative care to inform other primary-health care initiatives, including, potentially, mental health, cardiology, diabetes, geriatrics, where productive change can result from productively linking specialists and primary-care colleagues.

Standards and Guidelines: Do They Matter?

Journal of Palliative MedicineVol. 7, No. 6 Guest EditorialStandards and Guidelines: Do They Matter?Frank D. FerrisFrank D. FerrisSearch for more papers by this authorPublished Online:28 Dec 2004https://doi.org/10.1089/jpm.2004.7.750AboutSectionsPDF/EPUB Permissions & CitationsPermissionsDownload CitationsTrack CitationsAdd to favorites Back To Publication ShareShare onFacebookTwitterLinked InRedditEmail FiguresReferencesRelatedDetailsCited byHome hospice palliative care service in Korea: Based on focus group interviewJournal of the Korean Data and Information Science Society, Vol. 25, No. 1Palliative Care Benchmarks from Academic Medical Centers Martha L. Twaddle, Terri L. Maxwell, J. Brian Cassel, Solomon Liao, Patrick J. Coyne, Barbara M. Usher, Alpesh Amin, and Joanne Cuny13 February 2007 | Journal of Palliative Medicine, Vol. 10, No. 1 Volume 7Issue 6Dec 2004 InformationCopyright 2004, Mary Ann Liebert, Inc.To cite this article:Frank D. Ferris.Standards and Guidelines: Do They Matter?.Journal of Palliative Medicine.Dec 2004.750-752.http://doi.org/10.1089/jpm.2004.7.750Published in Volume: 7 Issue 6: December 28, 2004PDF download