Palliative care should extend across China and pay more attention to managing non-malignant disease – integrated within the country’s healthcare system and available to everyone who needs it, according to a new study.
Researchers have found that, with rapidly aging populations, there is an increasing need for palliative care across Greater China – Hong Kong, Macao, mainland China and Taiwan - to help improve quality of life, as well as reducing pain, anxiety and depression.
Experts at the University of Birmingham also called for more research to understand the causes of poor pain control for patients at the end of their lives – noting that low use of opioids may stem from widespread use of traditional Chinese medicine for pain control.
The researchers analysed all relevant existing studies in the field and, publishing their findings in the Journal of Pain and Symptom Management, noted that, in traditional Chinese culture, relatives’ views play an important role when making end-of-life care decisions. This created a major challenge for healthcare providers when patients’ family members views were at odds with professional recommendations.
For patients with dementia, they also called for a suite of policy initiatives including advance care planning, home-based palliative care and institutional care.
Report co-author Dr. Ping Guo, from the University of Birmingham, commented: “Evaluation of palliative care intervention demonstrated positive effects on improving patients’ quality-of-life, as well as reducing pain, anxiety and depression – cutting re-admission rates and cost. ”
“There are still gaps in our understanding, however, and further research is needed into the lack of rigorous randomised control trials, palliative care for patients with non-malignant diseases and identifying partnerships between specialist palliative care and community services. ”
“Policy support will be vital in establishing culturally appropriate palliative care services in the region and ensuring that palliative care is well integrated into the existing health system and available for all individuals and communities in need in Greater China.”
The researchers analysed studies relating to nine key themes:
Patients need for better pain control
69.9% of 2,185 patients with terminal cancer reported they usually had pain, with 47.4% of 1,370 terminal cancer patients reporting that they had unsatisfactory pain relief.
Patients’ need for reduced aggressive end-of-life care
Patients reported that they wished a peaceful and natural death, avoiding excessive treatment and dying with dignity.
Identifying and meeting preferred place of care and death
Home is the preferred place of death, but barriers to uptake of home-based hospice care made this difficult.
Patients need for truth telling
Families often concealed a prognosis from patients, believing that disclosure was inappropriate, but patients report negative emotional effects from not knowing their prognosis and being unable to make informed choices.
Patients need for physical, emotional, and spiritual support
Poor symptom relief is associated with worsening well-being among patients, who as a result, often suffer disturbed sleep, fatigue, drowsiness, delirium, and dyspnea.
Healthcare professionals need for training
Health care professionals who worked with dying patients with cancer in mainland China said they need to develop skills for end-of-life communication, psychological care, and dispelling patients’ myths and fears.
Informal caregivers need for end-of-life care education
Wives and husbands expressed a need for medical knowledge because they had to be active participants in cancer care.
Informal caregivers need for relieving care burden
Wives and husbands need help to alleviate their care burden as they balance between duties with care of their dying loved ones and other roles and duties to family and work.
Lack of national policy support
Oncology health care professionals acknowledge the needs of terminal patients and their families but find it difficult to implement measures because of the lack of relevant policy and legislation.
Palliative care is a human right, but a neglected dimension of global health. Projections suggest that serious health-related suffering in the last year of life is projected to increase by the year 2060 from 26 to 48 million people . Most of these people (83%) will live in low- and middle-income countries. In upper middle-income countries, such as mainland China, an 87% increase in serious health-related suffering at the end of life is expected .
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- ‘Palliative Care in the Greater China Region: A Systematic Review of Needs, Models, and Outcomes’ - Huei Chung, MSc, Richard Harding, PhD, and Ping Guo, PhD is published in the Journal of Pain and Symptom Management. The original research paper can be found at https://www.sciencedirect.com/science/article/pii/S0885392420307211?via%3Dihub