Stumbling and Growing: A Bibliometric Study of Academic Publications of Palliative Care in Mainland China for 2010–2020

Background: Mainland China is facing increasing demand for palliative care and has launched related policies after 2010. Research and publications are important for sustainable development of palliative care, and should be encouraged by policy. Objectives: This study aimed to describe the development of palliative care-related publications in Mainland China in various aspects. Design: We searched Web of Science, Scopus, PubMed, Cumulative Index of Nursing and Allied Health Literature, Ovid MEDLINE, and China National Knowledge Infrastructure for publications from Mainland China for 2010–2020, with the topic words “hospice,” “palliative care,” “end-of-life care,” or “terminal care.” The publishing year, region, impacts, journals, publication types, and topics were analyzed. Results: A total of 3682 publications were identified, 754 of them (20.5%) published in Chinese core journals or international journals. The annual publication number and impact factor rose rapidly after 2016 and dropped again in 2020. There is no specialized palliative care journal in Mainland China. The publication numbers differed significantly between East and Western China and were closely linked to the economy ( R2 = 0.8120, P < .0001). The megacities Beijing and Shanghai comprised 2.6% of the total population of Mainland China but produced 22.6% of the publications. Palliative care in cancer patients was the most common topic (37.7% of the publications). Practical keywords such as “pain management” and “living will” gained popularity recently. Conclusions: Palliative care-related research and publication in Mainland China are growing in recent years. However, the early stage growth is unstable, with a conspicuous regional disparity. Policies should be designed, in an equitable manner, to encourage original research and publication of palliative care.

Population’s Potential Accessibility to Specialized Palliative Care Services: A Comparative Study in Three European Countries

Background: Palliative care is a priority for health systems worldwide, yet equity in access remains unknown. To shed light on this issue, this study compares populations’ driving time to specialized palliative care services in three countries: Ireland, Spain, and Switzerland. Methods: Network analysis of the population’s driving time to services according to geolocated palliative care services using Geographical Information System (GIS). Percentage of the population living within a 30-min driving time, between 30 and 60 minutes, and over 60 min were calculated. Results: The percentage of the population living less than thirty minutes away from the nearest palliative care provider varies among Ireland (84%), Spain (79%), and Switzerland (95%). Percentages of the population over an hour away from services were 1.87% in Spain, 0.58% in Ireland, and 0.51% in Switzerland. Conclusion: Inequities in access to specialized palliative care are noticeable amongst countries, with implications also at the sub-national level.

Palliative Care in Pediatric Pulmonology

Children with End Stage Lung Disease (ESLD) are part of the growing population of individuals with life-limiting conditions of childhood. These patients present with a diverse set of pulmonary, cardiovascular, neuromuscular, and developmental conditions. This paper first examines five cases of children with cystic fibrosis, bronchopulmonary dysplasia, neuromuscular disease, pulmonary hypertension, and lung transplantation from Texas Children’s Hospital. We discuss the expected clinical course of each condition, then review the integration of primary and specialized palliative care into the management of each diagnosis. This paper then reviews the management of two children with end staged lung disease at Hospital Civil de Guadalajara, providing an additional perspective for approaching palliative care in low-income countries.

Trends in specialized palliative care referrals at an oncology center from 2007 to 2019

Background Early referral to palliative care, at least 3 months before death, should be a standard of care in oncological practice. Real life data in this setting are invaluable since they provide a picture of everyday practice and serve as the basis for future improvements. Methods We conducted a retrospective cohort assessment of all patients referred to our specialized palliative care (SPC) services at the Institute of Oncology, Ljubljana, Slovenia. Our analysis includes patient referrals between 2007 and 2019. Results During the above-specified time period of 13 years, 3234 patients were referred for SPC services at our institution. The median age at SPC referral was 67 years. The majority of patients (63%) were assessed only once, while 31% of patients were seen on more than one occasion. Median time from SPC referral to death was 25 days for the whole group. 1693 patients (52.7%) were referred to SPC in the last 30 days before death, 785 (25.8%) patients between 31 and 90 days and 652 (21.4%) patients more than 3 months before death. Neither age nor sex correlated with the duration of referral time. However, there was a strong correlation between the year of referral to palliative care and the duration of palliative care service (ρ = 0.19, p < 0.001). The median referral to death interval for lymphoma patients and breast cancer patients were 15 and 18 days, respectively, and the median referral to death interval for colorectal cancer and lung tumor patients were 34 and 26 days before death, respectively. Conclusion Throughout the existence of our SPC services we have observed a positive trend in the number of referrals, a lengthening of time between referral and death, as well as an increase in the proportion of patients with an early referral to SPC (more than 3 months before death). Neither age nor sex correlated with the length of referral time.

Benefits, for patients with late stage chronic obstructive pulmonary disease, of being cared for in specialized palliative care compared to hospital. A nationwide register study

Background In early stage chronic obstructive pulmonary disease (COPD), dyspnea has been reported as the main symptom; but at the end of life, patients dying from COPD have a heavy symptom burden. Still, specialist palliative care is seldom offered to patients with COPD; they more often receive end of life care in hospitals. Furthermore, symptoms, symptom relief and care activities in the last week of life for COPD patients are rarely studied. The aim of this study was to compare patient and care characteristics in late stage COPD patients treated in specialized palliative care (SPC) versus hospital. Methods Two nationwide registers were merged, the Swedish National Airway Register (SNAR) and the Swedish Register of Palliative Care (SRPC). Patients with COPD and < 50% of predicted forced expiratory volume in 1 s (FEV1), who had died in inpatient or outpatient SPC (n = 159) or in hospital (n = 439), were identified. Clinical COPD characteristics were extracted from the SNAR, and end of life (EOL) care characteristics from the SRPC. Descriptive statistics were used to describe the sample and the registered care and treatments. Independent samples t-test, Mantel–Haenszel chi-square test and Fisher’s exact test was used to compare variables. To examine predictors of place of death, bivariate and multivariate logistic regression analyses were performed with a dependent variable with demographic and clinical variables used as independent variables. Results The patients in hospitals were older and more likely to have heart failure or hypertension. Pain was more frequently reported and relieved in SPC than in hospitals (p = 0.001). Rattle, anxiety, delirium and nausea were reported at similar frequencies between the settings; but rattle, anxiety, delirium, and dyspnea were more frequently relieved in SPC (all p < 0.001). Compared to hospital, SPC was more often the preferred place of care (p < 0.001). In SPC, EOL discussions with patients and families were more frequently held than in hospital (p < 0.001). Heart failure increased the probability of dying in hospital while lung cancer increased the probability of dying in SPC. Conclusion This study provides evidence for referring more COPD patients to SPC, which is more focused on symptom management and psychosocial and existential support.

Timely short-term specialized palliative care service intervention for older people with frailty and their family carers in primary care: Development and modelling of the frailty+ intervention using theory of change

Background: Palliative care is advocated for older people with frailty and multimorbidity in the community. However, how to best deliver it is unclear. Aim: To develop and model an intervention of short-term specialized palliative care that is initiated timely based on complex care needs and integrated with primary care for older people with frailty and their family, detailing the intervention components, outcomes and preconditions needed for implementation, using a novel theoretical approach. Design: Observational study informed by the UK MRC guidance for complex interventions integrated with a Theory of Change (i.e. hypothetical causal pathway to impact) approach. We synthesized evidence from a systematic review, semi-structured interviews, group discussions and Theory of Change workshops. Setting: Primary care in Flanders, Belgium. Results: We identified patient and family carer-related long-term outcomes and preconditions to achieve them for example, service providers are willing and able to deliver the intervention. The intervention components included implementation components, for example, training for service providers, and a core component, that is, provision of timely short-term specialized palliative care by a specialized palliative home care nurse. The latter includes: short-term service delivery; collaborative and integrative working within primary care; delivery of holistic needs- and capacity-based care; person-centred and family-focussed; and goal-oriented pro-active care. Conclusions: The Theory of Change approach allowed us to identify multiple intervention components targeting different stakeholders to achieve the desired outcomes. It also facilitated a detailed description of the intervention which aims to increase replicability and effective comparisons with other interventions.

The experience of the "Program of palliative care in an outpatient setting in the Dnipro City for 2018-2021" implementation: the problems and prospects

Background. Many Ukrainian authors noted that an innovative System of Palliative and Hospice Care (PHC) and Social Services for Palliative Care (SSPC) the creation and implementation are the most important medical and social tasks of the Government and society in Ukraine today which appreciate the civilization and humanity of our state and society. PHC are a modern patient-family-oriented humanitarian approach that contributes to the preservation of the human dignity of palliative care patients (PCP) and can ensure the proper quality of life of PCP and their relatives. According to the WHO and the Council of Europe Committee of Ministers Recommendations, palliative care should be one of the priorities of the Health Care Government Policy in the European region. The purpose of the study: the "Program of palliative care in an outpatient setting in Dnipro City for 2018-2021" the implementation analysis. Materials and methods. The work used national and international legal documents and literature sources, data from medical statistics, methods of systemic and structural-functional analysis, bibliosemantic and statistical research methods. Results. The international and national legal documents and scientific literature a content analysis showed that in accordance with modern approaches and standards, PHC is provided taking into account the PCP and its family members needs, wishes and consent, depending on medical, demographic, socio-economic and cultural ethnic features of the region. A comparative analysis of the PHC state in Ukraine and Dnipro City showed some regional features, in particular, the significant need to provide PHC and SSPC to patients at home and the need and ensure a mechanism of cooperation between primary health care physicians, inpatient health care and social care institutions to develop. In 2017, the “Program of outpatient palliative care in Dnipro City for 2018–2021” (hereinafter - the Program) was developed and approved at the City Council session, which allowed the PHC and SSPC multidisciplinary and interagency approaches implementation, effective interdepartmental coordination, cooperation and the continuity of PHC and SSPC to ensure. The Multidisciplinary Mobil Specialized Palliative Care Team has been working in close contact with family doctors and social workers in the city since June 2019. As part of the Program, PCP are provided with medicines, technical and other means of care and rehabilitation free of charge or on preferential terms. In addition, the Palliative Care Team provides PCP, if indicated, oxygen concentrators and anti-decubitus mattresses. The Program creates points for renting medical care for PCP (wheelchairs, walkers, anti-decubitus mattresses, crutches, etc.), as well as providing patients with medical care at home (urine and feces, diapers, etc.). In 2020, UAH 300,000 was allocated from the Program budget for the Palliative Care Team with medical equipment, medicines and rehabilitation technical means complete set. In total, it is planned to allocate over UAH 40 million from the Dnipro City Budget for the Program implementation. Conclusions. 1. Thus, today in Dnipro City the Comprehensive Palliative Care System at home is implemented due to co-financing from the State Budget and due to the "Program of palliative care in outpatient conditions in Dnipro City for 2018-2021", approved by the Dnipro City Council the deputies. 2. An important condition for comprehensive provision of the Dnipro City population needs in PHC and SSPC is the Dnipro City Council support to create a modern accessible, high-quality and efficient PHC and SSPC service, which an effective interagency coordination, continuity and cooperation between health care providers and social care institutions provides, Multidisciplinary Mobil Specialized Palliative Care Team creation and development of in each the city district, the coordination and continuity of inpatient PHC in the city health provides. 3. There is both the Government support and municipal or regional budgets support for PHC Programs in many developed countries. The international PHC standards and experience implementation can significantly the provision of needs and the quality of life of both PCP and their families improve.

Appropriate Referral Timing To Specialized Palliative Care Service: Survey of Bereaved Families of Cancer Patients Who Died in Palliative Care Units

Few studies have investigated appropriate referral timing of specialized palliative care (SPC) from the perspective of cancer patients’ and families’ experiences. We aimed to clarify appropriate SPC referral timing for patients with advanced cancer and their families. We used data from a nationwide bereaved family survey in Japan. We sent a questionnaire to 999 bereaved families of cancer patients who died in 164 palliative care units (PCUs) and analyzed the first SPC referral timing and how patients evaluated it. We defined SPC as outpatient or inpatient palliative care service comprising certified palliative care physicians, advanced-practice nurses, and multidisciplinary practitioners. Finally, 51.6% (n = 515) of all responses were analyzed. The SPC referral timing was evaluated as appropriate (26.1%), late or too late (20.2%), early or too early (1.2%), and none of these (52.5%). Of these, 32.3% reported that they were referred to an SPC when diagnosed with advanced or incurable cancer or during anti-cancer treatment, and 62.6% reported they were referred after anti-cancer treatment. Patient-perceived appropriateness of SPC referral timing was associated with their good death process. After excluding “none of these” responses, a significantly higher proportion of respondents who reported being referred to SPC at diagnosis and during anti-cancer treatment evaluated the response timing as appropriate, compared to those who reported being referred after anti-cancer treatment. Appropriate timing for SPC referrals relates to quality of death; findings suggest that appropriate timing is at the time of diagnosis or during anti-cancer treatment.