Abstract
In response to the challenges posed by an aging population, an increasing cancer incidence, and the growing demand for hospice care services, China has actively promoted the development of hospice and palliative care, achieving significant progress in the past five years. This article provides a retrospective analysis of the efforts and accomplishments in the field of hospice and palliative care in China, focusing on government policy support, quality standards and regulations, drug management, health provider training, and public education. Additionally, the study explores the current issues and challenges in the field.
Keywords: Hospice and palliative care, Oncology nursing, End-of-life care, Resource distribution, Quality improvement, Health education
Introduction
The aging population in China, coupled with the increasing number of cancer patients, has presented new demands and challenges for hospice and palliative care services. Hospice care, as a comprehensive supportive care approach provided by health care professionals and volunteers, addresses the medical, physical, psychological, social, and spiritual aspects of patients in the terminal stage and their families.1 Its goal is to help people who are dying have comfort, peace, and dignity. On the other hand, palliative care provides a holistic care approach for patients with life-threatening illnesses and their families, aiming to enhance the quality of life by preventing, assessing, and treating pain and other physical, psychological, and spiritual distress symptoms. Palliative care spans the entire disease process and is further reinforced during the end-of-life phase through hospice care.2
With the growing societal emphasis on the quality of end-of-life care, advancing hospice care has become a crucial step in refining overall life cycle management and promoting the construction of a Healthy China. The government has shown significant interest in the development of hospice care, evident in the issuance of the “Healthy China 2030 Outline,” which explicitly states the need to strengthen the construction of hospice care and other medical institutions to achieve comprehensive health services from fetuses to the end of life.3 Under the guidance and impetus of the government, hospice and palliative care in China have experienced accelerated development in institutional construction, drug supply, health provider training, and public education. A previous commentary I authored in 2018 provided an overview of the development of palliative and hospice care before that year and highlighted the challenges to be addressed in the future.4 This review will elaborate on the major achievements in this field over the past five years.
Work undertaken and achievements
Government policies and support guiding the systematic development of hospice care
The Chinese government has provided robust policy support to facilitate the organized advancement of hospice care. In February 2017, the National Health Commission of the People's Republic of China issued documents regarding the basic standards, management norms, and practice guidelines for constructing hospice care centers, offering clear policy guidance on the structure, facilities, environment, and service content of hospice care institutions.
In September of the same year, the National Health Commission released a “Notice on Conducting Pilot Hospice and Palliative Care Programs” designating Beijing's Haidian District, Shanghai's Putuo District, Changchun City in Jilin Province, Luoyang City in Henan Province, and Deyang City in Sichuan Province as the first pilot centers, aiming to develop a model of hospice care service that will serve as models across China.
The notice outlined the tasks in pilot centers, including conducting surveys, establishing service systems, specifying service content, establishing work mechanisms, exploring institutional guarantees, strengthening team building, formulating standards and norms, and enhancing public education, among other aspects. These pilot centers, after more than a year of effort, gradually constructed a multi-level service system and diverse service models, including hospital-based, community-based, and home-based hospice care services.5 In 2019 and 2023, the government initiated more pilot institutions for hospice and palliative care, covering multiple provinces and a total of 185 cities (districts).6,7 The government-led pilot plan not only promoted the development of hospice care in various provinces and cities but also effectively increased the accessibility of hospice and palliative care services to the Chinese population.
Guided by national policies, provinces and cities have formulated stage goals and tasks. As an example, the Beijing government released the “Implementation Plan for Accelerating the Development of Hospice Care Services in Beijing” in January 2022.8 The plan outlined quantitative goals for hospice care system standards, service quality, models, and more by 2025. It provided a path to achieve these goals from resource allocation, service supply, service norms, health care professionals’ training, economic policies, information system construction, and other perspectives. By 2025, each district in Beijing will establish at least one hospice care center with no fewer than 50 beds, providing comprehensive services for end-of-life patients requiring inpatient treatment. The total number of beds providing hospice care services across the city will be no fewer than 1800 beds.
In addition to government-led pilot medical institutions, hospice care programs for specific populations are gradually increasing. For example, the “Daisy Home” children's hospice care ward, initiated by Dr. Xuan Zhou, director of the Hematology Department at Beijing Children's Hospital, was established in 2017 with the support of the Beijing New Sunshine Charity Foundation's Children's Palliative Care Special Fund. As the first family-style children's hospice care ward in China, the project was officially launched at the Beijing Songtang Hospice Hospital.9 Currently, the project has established cooperative wards in Beijing, Cangzhou in Hebei Province, Guangzhou in Guangdong Province, and Enshi in Hubei Province. A multidisciplinary team comprising health care professionals, social workers, psychological counselors, music therapists, nutritionists, and volunteers provides support. The project has accompanied 900 little angels, allowing them to spend their final moments in a comfortable and peaceful atmosphere while providing companionship and support to their families during the most difficult time in life.
Progressive improvement in hospice care-related quality standards and norms
In October 2019, the National Health Commission issued “Guiding Opinions on Establishing a Comprehensive Elderly Health Service System,” covering various aspects of hospice care services, including service content, models, fees, multidisciplinary team construction, and public awareness.10
Throughout the country, there has been continuous exploration and improvement of relevant systems, processes, hospice care service norms, quality standards, and payment forms. For example, in May 2020, the Health Commission of Nanjing issued documents on the construction standards for hospice care guidance centers, institutional settings, and review standards for medical service institutions providing hospice care.11 In August of the same year, Shanghai released the “Service Specification for Hospice Care in Shanghai,” detailing specifications for hospice care service forms, personnel functions, and service processes. This document serves as a practical guide for enhancing the quality of hospice care.12 The Health Commission organizes experts to conduct regular assessments of pilot medical institutions' work quality, facilitating the achievement of stage goals and promoting mutual improvement among these institutions. Additionally, building on the pilot work, the national level has successively introduced a series of policies to guide, support, and ensure the pilot institutions.
The formulation of relevant regulations has also provided support and legal protection for hospice care. For instance, the “Regulations of the Shenzhen Special Economic Zone on Medical Care,” issued by Shenzhen, Guangdong Province, on June 30, 2022, stipulates that citizens can make advance directives under certain formal requirements. This document clearly outlines that patients have the right to make choices about medical measures in the terminal or end-of-life stages,13 which marks the first initiative on the Chinese mainland to promote Advance Care Planning (ACP) in the form of regulations.
Furthermore, expert consensus, practice guidelines, and professional books authored by experts in the field of hospice and palliative care have been compiled. Examples include the “Clinical Guidelines for Integrative Cancer Care–Hospice Care” by the Chinese Anti-Cancer Association.14 Edited by Yongyi Chen and others, the “Standard Operating Procedure Guide for Hospice Care Nursing” has been published.15 The Oncology Nursing Committee of the Beijing Nursing Society has also compiled useful books such as “Handbook for Oncology Nurses” and “Q&A on Cancer Pain Management.” These professional materials provide health care professionals with standardized guidelines and practice manuals for hospice and palliative care services (Fig. 1).
Fig. 1.
Books: practice manuals for hospice and palliative care services.
Some health care institutions have actively explored end-of-life care pathways and models. For example, the nursing team at Peking University Cancer Hospital has developed and implemented an evidence-based supportive care model for end-of-life care. This model, currently being extended to multiple hospitals nationwide, has significantly benefited numerous patients approaching the end of life and their families.16
Standardization of drug management for hospice and palliative care
Over the past five years, there has been a gradual standardization of drug management for hospice and palliative care in China. This process ensures a reliable supply of analgesic medications for cancer pain patients while preventing the illegal circulation and misuse of opioid drugs. The main measures focus on two aspects.
Firstly, through the formulation and guidance of policies, in recent years, the Chinese government has issued a series of regulations to further regulate the management of anesthetic analgesic drugs. For instance, in 2019 and 2023, hydrocodone compound preparations, tramadol compound preparations, tapentadol, and tilidine were respectively included in the second-class psychotropic drug catalog for management. Additionally, in 2020, the National Health Commission's General Office issued a notice on “Strengthening the Management of Anesthetic Drugs and Class I Psychotropic Drugs in Medical Institutions”,17 making relevant regulations from the perspective of drug management. The notice includes specifying the responsibilities of the department and personnel in charge of anesthetic drug management, strengthening the procurement, storage, distribution, use, and safety management of these drugs; regulating doctors' prescription authority and usage management for anesthetic drugs; meeting the reasonable demand for anesthetic drugs in clinical settings; standardizing treatment; improving the information management level of anesthetic drugs to achieve full traceability; and enhancing the training of medical personnel on relevant laws, regulations, and rational drug use knowledge.
Secondly, strengthening supervision and inspection of drug management in medical institutions. Government departments regularly organize expert groups to supervise and inspect medical institutions, urging improvements on identified issues. For example, the Beijing Municipal Health Commission periodically conducts special inspections on the management of anesthetic drugs. Inspection contents include whether medical institutions have established an anesthesia management system, whether the content is consistent with current laws and regulations, and whether there are clear regulations for personnel, drugs, equipment, accounts, and prescriptions throughout the entire process. The inspection also covers the use and management of electronic imprints in the drug repository, whether the use of anesthetic drugs aligns with the hospital's relevant diagnostic and treatment departments, and whether the information in the “imprint card” is truthful. Checks are conducted on procurement, storage, issuance, prescriptions, etc., to ensure compliance and rational usage, thereby further enhancing the management of anesthetic drugs and class I psychotropic drugs in medical institutions.
Increase in training for hospice and palliative care professionals
The development of hospice and palliative care relies on the training of professionals. Over the past five years, China has conducted various forms of training activities nationwide, cultivating a large number of professionals in hospice and palliative care. The organizing institutions for training include government health administrative departments, medical institutions, academic organizations, and medical schools. The training targets various professionals, such as doctors, nurses, social workers, and volunteers. The content of the training includes courses focusing on the comprehensive needs of end-of-life patients and their families and the core competencies of hospice and palliative care. The training methods vary and include classroom lectures, workshops, group discussions, scenario simulations, case studies, and clinical practices.
The National Health Commission explicitly stated in the “National Nursing Career Development Plan (2016–2020)” the need to strengthen the capacity building of hospice and palliative care, accelerate the training of nursing talents in this field, and gradually improve relevant mechanisms to enhance the service capabilities of hospice and palliative care.18 Hospice care has also been included in the national “14th Five-Year Plan” for nursing undergraduate textbooks, becoming a fundamental course in nursing education to promote the sustainable development of hospice and palliative care nursing.19 According to information displayed on the China Graduate Enrollment Information Network in 2024, there are currently three universities ennrolling master's students in the field of hospice and palliative care.20 Many universities have set up professional courses related to palliative and hospice care, such as geriatric nursing and humanities nursing.
Guided by policies, in September 2019, the Chinese Nursing Association organized the compilation of training materials and subsequently launched the first training class for nurses to provide specialty certification in hospice and palliative care (Fig. 2).21 The training includes four weeks of course training and four weeks of clinical practice, and up to date, five sessions have been held, cultivating 1443 nurses in hospice and palliative care across the country.19 Credentialing through certifications will help nurses be well-positioned in the team to provide integrated care, education, and research related to the care of the dying and their families. In addition, the Chinese Nursing Association holds a national conference on hospice and palliative care annually, with over a thousand nursing nurses participating. The conference invites interdisciplinary experts in the field of hospice and palliative care to share and exchange advanced knowledge and skills in hospice care, promoting the professional role of nurses in the area.
Fig. 2.
Photo of the 2019 Chinese Nursing Association specialist nurse training class in hospice and palliative care.
Many academic organizations also conduct training courses in hospice and palliative care. For example, the Beijing Advance Care Planning Association (LWPA) introduced the end-of-life care education program, Quality End of Life Care for All (QELCA© TtT), developed by St. Christopher's Hospice from the UK to China. This program has been held 10 times nationwide.
The CARES tool for the care of the dying was initially proposed by Bonnie Freeman in 2013.22 Subsequently, Yuhan Lu and her team translated the CARES tool into Chinese in 2019.23 They not only translated the tool but also developed an educational program based on the CARES tool, conducting training courses and academic conferences. Over 1000 oncology nurses have been trained through these initiatives, which have played a positive role in enhancing the attitudes and behaviors of oncology nurses in providing care for dying patients.
Since 2017, Project HOPE, in collaboration with the Hubei Provincial Nursing Quality Control Center, has implemented a hospice care training program for nurses in Hubei. The program employs the Training of Trainers (TOT) approach to extend its reach to more health service providers (Fig. 3). Aligned with the core curriculum of the End-of-Life Nursing Education Consortium (ELNEC) and the Hospice Care Practice Guidelines issued by the Chinese National Health Commission, a comprehensive training curriculum was established. Following the TOT training, trainees were required to submit quarterly reports for ongoing monitoring and evaluation, covering areas such as peer education, patient education and service, and success stories. Annual reunion meetings were organized to update knowledge and facilitate the sharing of experiences and achievements. From 2017 to 2023, the program conducted six TOT training sessions, training 181 trainers. These trainers, in turn, reached 18,104 health care professionals through peer education, providing care to 28,412 patients and their family members. This extensive outreach not only improved public awareness of hospice care but also ensured that the quality of hospice care was enhanced in hospitals where trained nurses worked, thanks to the structured training curricula and ongoing support and follow-up.
Fig. 3.
Hospice care training class for instructors in Hubei Province.
Volunteers play a crucial role in the entire palliative care team, contributing by providing end-of-life care and psychological and emotional support to those in the terminal stage. These volunteers mainly come from various sectors of society and medical schools.24 Volunteer teams across the country play a significant role in improving the quality of end-of-life care. For example, the volunteer team at Peking Union Medical College Hospital, the “Seven-Colored Leaf Volunteers” of the Advance Care Planning Association, the “Benevolence Life Care Team” of Benevolence Charity Foundation, the Rongji Fund Volunteers, and the volunteers of the Chunmiao Foundation's Guiyuan Palliative Care Special Fund. These volunteers have received training in end-of-life care, the roles of volunteers, communication skills, physical care and emotional support for the terminally ill, as well as care for the bereaved, relevant laws and regulations, and ethical considerations, among other aspects.
Patient education and public advocacy
With growing societal concern for the quality of life for those approaching the end of life, organizations, institutions, and professionals related to hospice care use various media platforms to convey the principles and services of hospice care to the public.25 Every October, on World Hospice and Palliative Care Day, academic organizations such as the China Anti-Cancer Association, provincial and municipal anti-cancer associations, the Chinese Life Care Association, and the Hospice Care Committee of the Chinese Nursing Association, among others, engage in nationwide educational activities in classrooms, communities, and nursing homes. These activities cover concepts of hospice care, symptom management, death education, and home-based hospice care. They play a positive role in changing people's perceptions of hospice care and enhancing engagement.
Establishing advance care plans can help individuals receive end-of-life care in accordance with their wishes. ACP involves the process of communication to create advance directives while individuals are still competent, providing guidance for medical decisions. Numerous academic and philanthropic organizations actively promote advanced care planning. For instance, the Beijing Living Will Promotion Association, established in 2013, advocates for death with dignity by promoting living wills. These organizations have made significant efforts in advancing public education for hospice care through websites, journals, activities, training courses, and other means. In 2019, the Chinese Health Law Society, the Chinese Geriatrics and Gerontology Society Hospice Care Branch, and the Chinese Medical Doctor Association-Peking University Patient Safety and Doctor–Patient Relationship Research Center jointly initiated and formulated the “Model Expert Consensus on Medical Directives and Medical Proxy Authorization Documents (First Edition, 2019).” This initiative aims to facilitate the transformation of public awareness and the practice of hospice care principles.26
Furthermore, health care professionals actively engage in death education, guiding patients through life reviews to contemplate the meaning of life, discover life's value, and alleviate emotional distress.27
Issues and challenges
Achieving quality end-of-life care requires the attention and collective efforts of our society. Over the past five years, with the government's high-level attention and correct guidance, China's hospice care has experienced rapid development and achieved significant accomplishments. However, we must recognize that there is still a long way to go. The primary problems and challenges currently faced are as follows:
Uneven distribution of resources
With a large population and vast geographical expanse, there remains a gap between the resources for hospice care services for terminal patients and the demand for end-of-life care in China. Despite the gradual increase in hospice care institutions nationwide, which has alleviated the pressure on large hospitals by receiving late-stage cancer patients, further efforts are needed to achieve a balanced distribution of resources.
Need for improvement in end-of-life care quality
Due to the unique characteristics of cancer patients' illnesses, complex physical, psychological, and spiritual symptoms may arise in the terminal stage, posing challenges for effective management. Currently, many newly established and transformed hospice care institutions lack health care professionals who have undergone specialized training, including standardized treatment of symptoms, comfort care, end-of-life communication, and bereavement support. As a result, these institutions still lag behind specialized hospitals, such as cancer and geriatric hospitals, in providing quality care for patients in the end-of-life stage. Addressing how to enhance the content and quality of hospice care services at the grassroots level and promoting the delivery of high-quality end-of-life care for cancer patients is an urgent issue that needs attention.
Difficulty in transfer time of accepting hospice care
Many cancer patients, even at the stage when curative treatment is no longer effective, can't accept their current disease condition. Many treatments and tests are still being done that are not meaningful to reverse their disease. These measures not only fail to improve the quality of life of patients but also waste lots of medical resources. On the other hand, patients, unable to accept their disease condition, often fail to receive timely professional support for hospice care. Therefore, it is crucial to educate health care professionals in medical institutions to embrace the principles of hospice care, possess effective communication skills, timely recognize the appropriate timing for hospice care, guide patients to face and accept their disease condition, and facilitate the timely acceptance of hospice care.
Implications for oncology nursing
The rapid development of hospice care in China presents both opportunities and challenges for oncology nurses, whether in general hospitals or specialized hospice centers. Nurses should contemplate how to provide high-quality care for patients in the terminal stage.
While numerous hospice care institutions have been established nationwide, relieving the pressure on limited beds in large hospitals for end-of-life care, many cancer patients still spend their final moments in hospitals. End-of-life care is an integral part of comprehensive care for cancer patients, requiring oncology nurses to continually learn and master knowledge and skills related to symptom management, communication, psychological and emotional support, bereavement counseling, and more. Regardless of where patients spend their final moments, they should receive continuous and appropriate care.
The gradually established regional hospice care service network based on tertiary hospitals across the country provides new opportunities for oncology nurses. Terminally ill patients can be referred from tertiary hospitals to primary hospitals for basic hospice care, with the expertise of the hospice and palliative care teams from tertiary hospitals providing technical support, consultation, and advisory services to primary hospitals. Oncology nurses of tertiary hospital teams need to take on the responsibility of providing outpatient extended care to ensure cancer patients feel at ease at home. In recent years, many hospitals have developed the “Internet + Nursing” approach, offering convenient services through online appointments and specialized nurses providing home care, particularly in comfort care, malignant wound dressing changes, pain management, and other areas. These experiences are worth learning and spreading.
Given the complexity of symptoms in the terminal stage of cancer patients, nurses in primary hospitals and hospice care centers may have limited capabilities. Therefore, oncology nurses should actively utilize the practical and research resources of tertiary hospitals to explore hospice care service models and care pathways. They should also develop educational and training resources and programs, providing practical and educational guidance for nurses in grassroots hospitals and hospice care centers to become leaders in quality improvement.
In oncology nursing, health education is a crucial responsibility. Nurses have always been the primary drivers of patient and public education. They should actively develop and implement health education programs, including life education, ACP, home-based palliative care, family support, etc. to assist in navigating life's most challenging journey of the terminally ill and their families.
CRediT authorship contribution statement
Yuhan Lu: Conceptualization, Review of literature, Writing – Original and revised draft preparation. Wenhua Yu: Review of literature, Writing – Original draft preparation, Submission. Jie Zhang: Review of literature, Writing – Original draft preparation. Ran Li: Review of literature, Writing – Original draft preparation. All authors had full access to all the data in the study, and the corresponding author had final responsibility for the decision to submit for publication. The corresponding author attests that all listed authors meet authorship criteria and that no others meeting the criteria have been omitted.
Declaration of competing interest
All authors have no conflicts of interest to declare. The corresponding author, Professor Yuhan Lu, is a member of the editorial board of the Asia-Pacific Journal of Oncology Nursing. The article underwent the journal's standard review procedures, with peer review conducted independently of Professor Lu and their research groups.
Funding
This study received no external funding.
Ethics statement
Not required.
Data availability statement
Data availability is not applicable to this article as no new data were created or analyzed in this study.
Declaration of Generative AI and AI-assisted technologies in the writing process
No AI tools or services were used during the preparation of this work.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Data Availability Statement
Data availability is not applicable to this article as no new data were created or analyzed in this study.