China, People's Republic of : Improving Capacity for Home-Based Hospice Care of the Elderly in Beijing

Health / Health system development

Palliative care is an approach that improves the quality of life of patients and their families who are facing problems associated with life-threatening illness. It prevents and relieves suffering through the early identification, correct assessment, and treatment of pain and other problems, whether physical, psycho-social, or spiritual. Hospice care is a type of palliative care for people at the final stages of life. Each year, an estimated 40 million people need palliative care worldwide, and only 14% of them receive it. Adequate national policies and programs that ensure gender equality and socially inclusive approach, resources, and training on palliative care among health professionals are urgently needed to improve access. The global need for palliative care will continue to grow because of the aging of populations and the rising burden of diseases. In 2000, the PRC formally became an aging society, when its population aged 65 and above exceeded 7% of the total. In 2019, this ratio reached 14% (254 million) and is expected to reach 28% (402 million) in 2040. Mortality rates are expected to increase from 7.7 per 1,000 persons to 11.2 per 1,000 persons between 2020 and 2040.

The Government of the PRC has been responding to these challenges by developing national policies and programs, and investing in services and systems that support rapid adoption and development of hospice care. In 2017, the National Health Commission issued the Notice on Pilot of Hospice Care, which officially launched piloting of hospice care in the PRC; and, in 2019, it issued the Notice on the Second Batch of Pilot of Hospice Care and the Notice on Enhancing Geriatric Home-Based Medical Services. In 2017, the Beijing Municipal Health Commission (BMHC) launched the first 15 hospice care pilots in general hospitals, and established basic standards and service specifications for the pilot entities. Following the issuance of the national hospice care policies, Beijing, as the center of the leading government research and academic institutions, is ideally positioned to develop, promote, and set examples for replication in other parts of the PRC for quality hospice care standards and services that are inclusive and applicable in varying home-based care context by (i) developing and piloting the home-based hospice care service system and home-based hospice care referral criteria and practice guidelines; (ii) improving the service providers' capacity; and (iii) developing and piloting the training system, which could play an exemplary and leading role in the PRC to help improve the end-of-life care of the elderly in the country.

The results of the research and pilots will be shared and implemented in health care institutions throughout the entire country. In 2019, BMHC conducted surveys on hospice care status and needs, admission standards and specifications, and a list of services for hospice care at the community level. In 2020, BMHC issued the Notice on the Determining the Beijing Hospice Care Guidance Center and the First Batch of Hospice Care Demonstration Bases in Beijing. In 2021, BMHC started developing the model and mechanisms combining institutional, community, and home-based hospice care. BMHC also encouraged and guided community health service centers to pilot and provide community and home-based hospice care services. In 2022, BMHC issued the Notice on Printing and Distributing the Implementation Plan for Accelerating the Development of Hospice Care Services in Beijing, which aimed to further improve quality and supply capacity of hospice care services in institutions.

To gradually meet the hospice care needs of the elderly in health institutions, BMHC issued policies, enhanced the system, developed an inpatient hospice care model, and improved human resources capacity. In contrast, home-based hospice care for older people is still at the early stages of development. In line with the current geriatric care pattern in Beijing, about 90% of the elderly are expected to receive home-based elderly care, which reflects the substantial demand for home-based hospice care. Considering the substantial demand for home-based hospice care, the government has been paying attention to (i) the complexity of home-based services, which creates a challenge for the development of respective guidelines, and (ii) the variability of geriatric health status, which highlights the need for developing patient referral criteria. These factors present unprecedented challenges to the PRC hospice care service capacity because health care staff from other medical-related specialties need to be trained to provide hospice care. Therefore, it is critical to develop patient referral criteria, home-based hospice care guidelines, and training programs and courses to improve home-based hospice care with an emphasis to ensure home-based hospice care for geriatric patients.

The hospice education and training programs need to be improved by (i) developing early screening criteria, checklists and referral procedures, care needs assessment, and comprehensive education and training programs for palliative and hospice care tailored to gender-specific needs and behaviors; (ii) identifying prognostic factors of timely palliative care referral; and (iii) developing evidence-based and tailored palliative care and hospice services. The capacity of medical personnel to provide home-based hospice care is the most critical factor to improve quality of life of the elderly during their end-of-life phase. In addition, because of the lack of systematic hospice care training, both nursing theory and practical skills of medical personnel are insufficient to meet the demand of the patients and their families for hospice and palliative care.

A gender-responsive and socially inclusive approach is important in designing and implementing hospice care; such an approach relies on gender and social assessment of the service's context and stakeholders. Socioeconomic factors affect access to professional hospice care services, and gender-responsive design determines the quality of service for patients and caregivers, both of whom are often female members of a household. Research shows that at least 75% of primary caregivers are female household members, and the socioeconomic and psycho-social stress of the caregivers and children in the household can have grave, lasting negative effects that need policy attention. Female patients adopt more expressive coping strategies, have stronger needs for communication with and support of health care professionals, and activate an extended social network for support and decision-making. In contrast, male patients mostly rely on social support from partners and more frequently expect to be cared for at home. Therefore, hospice care needs to integrate gender-specific considerations into policy and program planning. Because primary caregivers in the household are mostly female, home-based hospice care services may continue to promote traditional gender roles and women's responsibilities as caregivers unless carefully designed with gender lenses. Socioeconomic factors often determine the ability to access quality home- or facility-based hospice care services. Therefore, the socioeconomic context and needs of families who choose home-based hospice care services must be investigated. Home-based hospice care services need to consider the psycho-emotional negative impact on household members. The design and implementation of hospice care should adopt an inclusive approach with respect to the scope of care when provided in home settings.

The TA will build on experiences and lessons from elderly care projects and hospice care pilots funded by ADB in the PRC that highlight the importance of focusing on community and home-based elderly care services; improving coordination and cooperation of agencies in charge of elderly care policies, systems, and services; promoting close cooperation between the social and health care institutions; and investing in developing human resources capacity and knowledge.

Access to home-based geriatric hospice care improved (National Plan for Actively Responding to Population Aging in the Medium and Long Term)

Management of gender-responsive and socially inclusive home-based geriatric hospice care system strengthened

Clinical guidelines and guidance notes for home-based geriatric hospice care developed

Health care staff capacity for inclusive home-based hospice care strengthened