Special Issue: Hospice Care
Palliative care is one of the effective means to protect the rights of good death and improve the quality of life in end-stage patients. Palliative care in Singapore is developing rapidly and a comprehensive palliative service system has been gradually established, ranking in the top of Asia in the latest national quality of death ranking. This paper proposes that the social awareness, education and training of palliative care should be strengthened, the power of charities and NGOs should be utilized, the existing palliative care carrying capacity should be improved, palliative care related system and legal protection should be established in China, by sorting out the current situation of hospice care, the practical experience in public education, personnel training, charitable support, related policies and legal protection in Singapore, in order to achieve the hospice needs of end-stage patients.
Community-based intervention is an important part of palliative care for advanced cancer patients. However, its role in the health management of advanced cancer patients remains to be supported by medical evidence.
To evaluate the efficacy of community-involved hospice care for patients with advanced cancer.
Wanfang Data Knowledge Service Platform, CNKI, VIP were searched by using Chinese keywords such as "community" "medical model" and "advanced cancer", Cochrane Library, PubMed and Web of Science were searched by using English keywords such as "Community-based" "Model of Palliative Care" "Advanced Cancer" "Quality of Life", to obtain randomized controlled trials (RCTs) related to the efficacy of community-involved hospice care from 2007-01-01 to 2022-05-10 by using Cochrane system evaluation method on 2022-05-22. The quality of RCTs meeting the inclusion criteria was evaluated, and the valid information was extracted for meta-analysis.
A total of 11 RCTs in English and 9 RCTs in Chinese were included in the study, involving 2 356 and 1 238 patients, respectively. Meta-analysis showed that compared with routine cancer care, community-involved hospice care could improve quality of life and symptom severity in patients with advanced cancer, demonstrated by increasing Functional Assessment of Chronic Illness Therapy-Palliative Care scale socre〔MD (95%CI) =3.77 (0.83, 6.71) , P=0.01〕and Quality of Life Instruments for Cancer Patients scale total score〔MD (95%CI) =12.53 (2.36, 22.69) , P=0.02〕, reducing Functional Assessment of Cancer Therapy scale total score〔MD (95%CI) =-2.61 (-3.53, -1.70) , P<0.01〕 and Edmonton Symptom Assessment System score〔MD (95%CI) =-2.45 (-4.70, -0.20) , P=0.03〕. However, the improvement of community-involved hospice care on depressive symptoms and overall survival rates of patients remains controversial, and its effect on economic indicators such as admission rates, hospitalization days/numbers needs to be further explored.
Community-involved hospice care can improve the quality of life and symptom severity of patients with advanced cancer, however, its improvement in hospice care in the depressive symptoms and overall survival rates of the patients remains controversial, and its improvement in economic indicators such as admission rate and hospital stay/inpatients admissions remains to be further explored.
In the initial promotion of pilot hospice care services (HCS) in China, there is an urgent need to evaluate the quality and effectiveness of HCS comprehensively in pilot institutions.
The purpose of this study was to establish a meso-level comprehensive assessment system of hospice care, and to provide a scientific measurement tool for assessing and comparing hospice care in various pilot institutions.
An item pool for establishing a comprehensive assessment system for HCS was constructed through a literature review and small-scale expert interviews from April to May 2021, then the items were rated using a 9-1 grading scheme (the highest grade is 9, while 1 is the lowest) in terms of three aspects (relevance, measurability and feasibility) during two rounds of expert consultation conducted using the RAND/UCLA modified Delphi panel method from June to July 2021.
The Comprehensive Assessment System of Hospice Care (CASHC) was established finally after the items were revised and improved according to the results of two rounds of expert consultation, which consists of 3 primary indicators (structure, process and outcome), 9 secondary indicators (policy guarantee, service provision, patient burden, etc.), 25 tertiary indicators (institutional system guarantee, number of services, per capita cost, etc.) and 81 quaternary indicators (inclusion of institutional development plan, number of hospital discharges and per capita medical cost, etc.). The first round of consultation achieved a response rate of 93.3%, an authority coefficient of 0.900, with values of Kendall's W for the quaternary indicators calculated as 0.194, 0.115, and 0.126, respectively. The second round of consultation achieved a response rate of 92.9% and an authority coefficient of 0.900, with values of Kendall's W for the quaternary indicators of 0.417, 0.241, and 0.322, respectively.
The CASHC consisting of four-level indicators established using the Donabedian's structure-process-outcome framework is an innovative and practical tool, which can be used to quantify and compare the quality and effectiveness of HCS among different pilot institutions or different regions, contributing to the promotion of the standardization and homogenization of HCS in pilot regions.
Community home-based hospice care service plays an important role in hospice care service. Focusing on community home-based hospice care is the future direction of hospice care service development. As the early countries to develop community home-based hospice care delivery, the United Kingdom and the United States have accumulated rich experience in patient admission standard, service team and content, and funding guarantee of community home-based hospice care delivery, a relatively sound community home-based hospice care delivery system has been established in these two countries. China can appropriately learn from the development experience of community home-based hospice care in the United Kingdom and the United States, in order to formulate the admission standards of community home-based hospice care, strengthen the construction of multidisciplinary hospice care teams, incorporate the non-drug therapy into the scope of community home-based hospice care, implement the payment method of per-diem, so that the patients can die peacefully and dignifiedly in a familiar environment with their hospice rights protected.
The Act on Decisions on Life-sustaining Treatment for Patients in Hospice and Palliative Care or at the End of Life (hereinafter referred to as the Hospice Care Act) enacted by South Korea in 2016, clearly defines the definition of hospice care and the premise of implementing hospice care, stipulates the hospice care responsibilities and liabilities for the country's government, and sets up the framework of the hospice care system, which is of great significance to promote the development of hospice care and to protect the rights and interests of passing away peacefully in end-of-life patients in South Korea. We introduced the main contents of the Hospice Care Act, and the achievements obtained in South Korea since its implementation, aiming at providing insights into the promotion of hospice care legislation in China. To provide an all-round and refined legal protection for hospice care reform, innovation and high-quality development in China to support healthy dying in end-of-life patients, we put forward the following recommendations: clarifying the rights for hospice care patients, enacting specific regulations on hospice care when conditions are ripe, building a government-led hospice care system, affirming the concept of ineffective medical treatment, and stipulating the process of utilization of hospice care.
Establishing and improving the hospice care system is an integrant part of healthy ageing. Currently, hospice care has been a part of the national healthcare services, and models of provision of hospice care using multi-agent approaches have been formed in China. Furthermore, the inpatient-outpatient-home-based hospice care model has begun to take shape. And some regions have also explored the guidance center-demonstration base-professional institutions-based system for promoting hospice care. However, many problems have been revealed during the development of the hospice care system, such as low coverage of hospice care, uneven distribution of hospice care resources, imperfect mechanisms for eligibility approval, performance assessment and ineligibility exit targeting hospice care provision institutions, and the absence of an integrated hospice care model. In view of this, we put forward the following recommendations: legally defining hospice care belonging to essential healthcare services in essence, improving the inpatient-outpatient-home-based hospice care model, building an integrated hospice care system focusing on home-based hospice care in communities, and establishing a national center-regional center-professional institutions-based hospice care promotion system.
In the 21st century, Japan has carried out hospice care services, and developed a sound home-based hospice care system to address the social issues of "fewer children, more older people". And the development of the system is also a key part of Japan's healthcare provision system reform. We introduced Japan's home-based hospice care in terms of concept and ideas, provision institutions, providers and service profile, as well as laws ensuring corresponding imbursement, and put forward the following recommendations for the development of home-based hospice care and for the protection of rights and interests of older people to pass away at home via a sound system design in China: improving the laws about hospice care under appropriate conditions, stably developing home-based hospice care during the implementation of the current healthcare provision system, establishing and improving a collaborative mechanism in providing hospice care, and providing essential financial support for the development of home-based hospice care.
Survival assessment, psychological counseling and other services included in the comprehensive hospice care program conform to the hospice care philosophy, and may be independently delivered to patients to satisfy their needs in a pioneering approach by some health institutions, but the expenses of them could not be reimbursed by health insurance due to lack of an official basis for charging, which may be a bottleneck restricting the development of hospice care.
To systematically assess the hospice care services whose expenses are ineligible for reimbursement by health insurance independently provided by community health centers (CHCs) in a pioneering approach, offering a basis for improving the services and price system of hospice care.
From July to October 2020, by use of typical sampling, one or two CHCs with relatively heavy workload of hospice care were selected from each district of Shanghai, then from which 30 were selected to attend a survey for understanding the implementation status of hospice care using a self-developed questionnaire named Pilot Hospice Care Services Pioneered by Shanghai Community Health Centers, involving inpatient and home hospice care (35 services belonging to five types) . Individuals in charge of hospice care delivery completed the questionnaire according to the status of hospice care implemented in their CHCs in the past year.
The survey obtained a response rate of 96.7% (29/30) . Among the respondent 29 CHCs, 28 (96.6%) delivered inpatient palliative care services, and the median number of services available was 27 (15) ; 25 (86.2%) provided home hospice care services, with 25 (15) as the median number of services available. There was no significant difference in the number of services belonging to five types delivered for inpatients and at home (P>0.05) . There were also no significant differences in the number of inpatient and home hospice care services delivered by CHCs in central urban, suburban, and exurban districts (P>0.05) . Among the hospice care services delivered for inpatients, the average proportions of five types of services, namely assessment services, comfort care, appropriate technology of hospice care, psychological support and humanistic care were 85.7%, 78.6%, 48.6%, 88.4% and 67.5%, respectively. Among the hospice care services delivered at home, the average proportions of above-mentioned five types of services were 86.3%, 60.0%, 42.0%, 84.0% and 62.0%, respectively.
Hospice care services have been widely implemented in Shanghai's CHCs with good availability and insignificant inter-district differences. To incentivize the CHCs and medical workers to provide hospice care, there is an urgent need to further standardize the hospice care services, develop relevant quality criteria, improve the price system, and reform the payment method.
