Palliative care to be more inclusive in China
Palliative care is a medical caregiving approach aimed at optimizing quality of life and mitigating suffering among people with serious, complex illness. Photo: CFP
While modern biomedicine has extended people’s lives, another issue remains unsolved: how do we best fulfill patients’ physiological, mental, and social demands when they face the end of their lives?
Palliative care in China
Between active treatment and ending medical treatment, there is actually a third approach: palliative care—a care service which allows patients to die with dignity. Palliative care refers to the mental and physical care services provided to patients in the terminal stages of illness, or elderly patients approaching the end of their lives. This care service is rendered in a compassionate way to ease pain and uncomfortable symptoms, increase patients’ life quality, and it allows people pass away in a comfortable and peaceful way with dignity. In an aging society such as China’s, demand for palliative care has grown increasingly.
According to the Blue Book on the Development of Palliative Care in China (2019-2020), released in 2020, 184 million people nationwide suffered from chronic diseases in old age in 2016, with 7.32 million elderly patients in need of palliative care.
Since the establishment of China’s first hospice in Nanhui, Shanghai, in October 1988, palliative care in China has developed progressively throughout the past 30 years. In January 2017, the National Health Commission issued the Basic Standards for Hospice Centers, Management Specifications (for Trial Implementation) and Guidelines for Palliative Care Practice (for Trial Implementation) and brought forth two rounds of trial hospices in 2017 and 2019, respectively. The Law of People’s Republic of China on Promotion of Basic Medical and Health Care, passed at the end of 2019, includes palliative care in their all-round and full-cycle medical and health services.
According to data from the National Health Commission, palliative care served a total of 283,000 patients nationwide in 2018, and 61 facilities that could provide palliative care services nationwide by the end of 2019, with a large increase in the number of beds and practicing healthcare professionals. However, by the end of 2019, the number of elderly people, aged 60 and above, had reached 254 million nationwide, accounting for 18.1% of the total population, indicating that there is still a huge unmet demand for palliative care in China. Therefore, it is necessary to promote the establishment of an inclusive palliative care system under socialism with Chinese characteristics.
More inclusive care
Palliative care should be inclusive. Inclusivity means the care should be accessible to all, have balanced regional resources, and that service quality should be high. As a service that can save social resources and meet the public’s basic needs, palliative care is presently one of the most relevant inclusive livelihood improvements. An inclusive hospice system emphasizes fair service and the welfare of the social security system, while also accounting for sustainable service provisions. Under the current domestic policy environment, palliative care supplements basic livelihood policies concerning the right to “die with dignity,” showcasing humanistic ethics’ value under socialism with Chinese characteristics.
In order to build an inclusive hospice system under socialism with Chinese characteristics and guarantee that people’s lives and health are structurally supported at all times, it is necessary to achieve breakthroughs and innovations in the following five areas of governance: responsive coordination among three levels of administrative sectors; social welfare; collaborative cooperation; service standardization; and multidimensional evaluation.
Room for improvement
First, we need to improve service modes that involve hospitals, communities, and households. To make the palliative care system more inclusive among all population groups, we need to establish an effective linkage mechanism that connects hospitals, communities, and households. This mechanism should increase palliative care coverage by fully engaging not only hospitals’ technological resources, but also community-based nursing and supporting organizations’ resources, as well as individual family’s daily care for ill and elderly patients. It is essential to take a targeted approach when distributing and integrating medical and social resources.
Palliative care can be found mostly in tertiary hospitals. However, under the existing system, tertiary hospitals find it difficult to accommodate the sheer number of patients in need of palliative care. Therefore, it is necessary for communities and patients’ family members to provide beds and daily nursing care themselves, under professional guidance. Meanwhile, a big data platform should be established to monitor and control the entire care system, while also managing data and allocating resources. Hospitals, communities, and patients’ families should shoulder different degrees of responsibilities based on different scenarios.
Second, we need to build a social welfare system to accompany palliative care. To ensure the sustainability of palliative care, it is essential to help palliative service providers financially. Therefore, a social welfare system with a clear operating mechanism for palliative care’s payment structure must be established, and integrated with social security. Many scholars have recommended including palliative care in basic medical security plans, while also specifying the ratio of government spending to medical insurance spending regarding palliative care. To establish and improve the social security system for palliative care, it is also necessary to design a social assistance pathway for socially disadvantaged groups such as elderly patients with disabilities or dementia.
Third, we need to explore a cooperation model that creates a synergy between different sectors, institutions, and industries. Building an inclusive palliative care system involves complex social systems engineering, since it will take joint forces from healthcare administration departments, civil administration departments, and social security organizations.
Specifically, policymakers must break institutional barriers between medical treatment facilities and civil administration. In China, palliative care services are mainly provided for the elderly. Therefore palliative care usually concerns two different systems: aged care and traditional medical treatment. The civil administration system and medical system need to carry out improvements together. It is necessary to fit palliative care into China’s elderly care system, one that features home-based aged care and is supported by local communities, and supplemented by institutions. Meanwhile, we need to explore the best ways to integrate institutions which combine medical care with elderly care—such as old people’s homes and nursing homes—into the palliative care system. There should also be referential policies for palliative care in insurance and subsidy systems offered by civil affairs, such as incorporating palliative care into long-term care insurance coverage. What’s more, we should also attract social capital by using policy dividends to encourage the establishment of, and investment in, hospices. It is also important to include privately-owned medical institutions into the palliative care system, and to explore the transfer of treatment and cooperative mechanisms among different types of medical facilities.
Fourth, we need to create norms and technical manuals for palliative care services, which are aimed at providing holistic care for terminal patients that covers their mental, physical, social, and spiritual well-being. To build an inclusive palliative care system, we need to use team spirit to adopt a multidisciplinary approach to providing care services. We need to change the traditional mindset of treating symptoms, while taking into consideration the patient’s physical, mental, and social condition. Doctors, nurses, social workers, and volunteers need to work together as a basic service team, and play an essential part in accompanying patients and their family members, managing individual cases, offering grief counseling, life education, and integrating resources.
The roles and status of social workers in the current medical, elderly care, and social welfare systems need to be further clarified. Therefore, it is necessary to specify the responsibilities of different service providers, and create an elaborate and scientific technical guidance program that specifies service content. These norms and manuals will also help with studies regarding cost calculations and payment mechanisms for palliative care.
Fifth, we should design and implement a multi-dimensional assessment framework for palliative care. Palliative care services should be inclusive to truly benefit the people. To increase coverage, we need to adopt the right assessment framework at the same time as we increase service provision. To facilitate a comprehensive and scientific assessment, scholars should not only evaluate the economic feasibility of service structures, but also look at the big picture to ensure the best outcome, including potential ethical, legal, and social issues.
To popularize palliative care in a huge country like China, we need to take into account the different development levels and social conditions throughout the country, and prepare for any potential problems.
Cheng Yu and Fu Longwen are from the Medical Humanities Department of the Seventh Affiliated Hospital of Sun Yat-sen University.
Edited by WENG RONG