Exploring the challenges of implementing palliative ...

Exploring the challenges of implementing palliative care in China national viewpoint

S Wei Liu and Ping Guo look at palliative care in China and ask: can a

‘good death’ be achieved for Chinese patients with advanced illness?

msc mD

professor, Chief physician of oncology, Director 1 Ping Guo rn msc phD

project manager and research associate 2

Beijing Cancer hospital palliative Care Centre, Beijing, China 2 Cicely saunders institute, Department of palliative Care, policy and rehabilitation, King’s College london, UK 1

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alliative care, according to the WHO definition in 1990,1 is the active holistic care of patients with advanced progressive illness, including the management of pain and other symptoms, and the provision of psychological and social support. Its aim is to achieve the best quality of life for patients and their families. In 2002, WHO redefined palliative care as an approach that improves the quality of life of patients and their families facing problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, encompassing physical, psychosocial and spiritual elements.2

For several decades, palliative care services have been rapidly expanding globally, particularly in Europe, the USA and developed areas in Asia, but in China the situation is radically different. Resources, policy and cultural attitudes are at the root of the problem.

The evidence base

There is plenty of evidence that palliative care brings benefits.3,4 A study conducted in Massachusetts General Hospital in Boston, USA, for example, randomly assigned 151 patients with newly diagnosed metastatic non-small-cell lung cancer to receive either early palliative care integrated with standard oncologic care or standard oncologic care alone. The patients who received early palliative care had significant improvements in both quality of life and depressive European Journal of Palliative Care | 2017; 24(1)

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&Wei Liu

symptoms. Compared with the standard treatment group, patients in the early palliative care group had less aggressive care at the end of life but 2.7 months longer median survival (11.6 months versus 8.9 months, p=0.02).5 The patients also had a dignified ending of life – a ‘good death’. It is recognised that the integration of early palliative care into routine practice advances holistic assessment and care, providing patients and their families with improved quality of life and even a prolonged survival time. In the context of limited resources, evidence on the costs and cost-effectiveness of palliative care is increasingly important in order to facilitate appropriate resource allocation and adjust over-treatment. Smith et al conducted a comprehensive literature review of available international evidence on the costs and costeffectiveness of palliative care interventions in different settings, such as hospital, home and hospice. During the period 2002–2011, palliative care was most frequently found to be less costly relative to comparator groups, and in most cases, the difference in cost was statistically significant.4

China’s position in the global rankings

The UK ranks first in the 2015 Quality of Death Index, a measure of the quality of palliative care in 80 countries around the world published by the Economist Intelligence Unit.6 It shows that palliative care has developed rapidly worldwide in terms of availability and quality, and wealthy countries cluster at the top. Australia and New Zealand take second and third place, Taiwan sixth place, the US ninth, and Canada eleventh. Common characteristics among those leading countries with a high quality of death include: ● an effective and efficiently implemented national palliative care policy framework ● sufficient public spending on healthcare services ● extensive palliative care training resources for general and specialised medical workers ● wide access to opioid analgesics ● strong public awareness of palliative care. Compared with developed countries, China performs poorly, at position 71. The country faces its most pressing challenges from population ageing and the rising incidence of chronic conditions such as cardiovascular disease, which accounted for a third of all deaths in the country in 2012.6 Large geographical variations in healthcare make the quality of palliative care diverse. There is room to improve public awareness, government support and investment, multidisciplinary cooperation, training and clinical research in palliative care. This paper focuses on the development of palliative care for cancer patients.

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Development of palliative care in Mainland China

national viewpoint

The evolution of palliative care in the UK in the 1960s 7 influenced the development of various models of care in both developed and developing countries,8 and this was also the case in China. Some of the milestones along the way are: ● 1988 – establishment of the End of Life Care Research Centre at Tianjin Medical University, China’s first end-of-life care research institute ● 1989 – launch of the institute’s End of Life Care Ward, taking China into a new era in palliative and end-of-life care ● 1990 – government’s introduction of the WHO three-step analgesic ladder, which was driven by Professor Yan Sun and popularised nationally ● 1994 – founding of the Committee of Rehabilitation and Palliative Care (CRPC), under the leadership of the Chinese AntiCancer Association (CACA) ● 1998 – founding of the first hospice providing home-based and outpatient services, at the First Affiliated Hospital of Shantou University Medical College, sponsored by Li Ka Shing Foundation (LKSF) ● 2001 – number of hospices across China reaches 32; 9 they have a particular focus on providing palliative and hospice care to patients with advanced cancer and low socioeconomic status ● 2004 – establishment of the Palliative Care Centre in West China University of Medical Sciences, followed by the founding of departments of palliative care and rehabilitation in many provinces, cities and medical institutions 10 ● 2007 – founding of pain management departments and, since 2010, the inclusion of morphine in the directory of national essential medicine ● 2011 – Ministry of Health promoted the establishment of Good Pain Management Wards nationally ● 2015 – founding of the Palliative Care Centre of Beijing Cancer Hospital ● 2015 – establishment of the China International Exchange and Promotive Association for Medical and Health Care and Chinese Association for Humanistic and Palliative Care (CAHPC), chaired by Professor Wei Liu. This association offers a platform to discuss and spread new ideas in palliative care, to promote communication and cooperation, and to advance the development of palliative care and medical humanities in China. In 2016, the National Health and Family Planning Commission released a government notice of Enhancement on Standardised Cancer www.ejpc.eu.com | 13


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national viewpoint

Diagnosis and Treatment, which emphasised the optimisation of models of cancer treatment and care, palliative treatment and the importance of meeting the psychological and social needs of patients. Expert consensus has now been reached on the management of a range of symptoms in palliative care in cancer, with guidelines such as: ● Expert Consensus of Advanced Cancer Combined with Bowel Obstruction ● Guideline of Cancer Treatment-induced Nausea and Vomiting ● Expert Consensus of Anticancer Drug-related Liver Injury. In addition, a large number of studies have been carried out on the use of Traditional Chinese Medicine (TCM) in palliative care, including Expert Consensus of Chinese Herbal Medicine Use in Cancer Palliative Care, written by Professor Pingping Li from Beijing Cancer Hospital, which is a good guide for clinical practice.

Features of care and challenges

China is a huge, heavily populated country with severe income inequality, a large rural population and entrenched cultural attitudes, all factors that combine to make the speedier development of palliative care services highly challenging.

Vast territory leads to great regional disparity A disproportionate amount of healthcare resources have traditionally been allocated to larger – and particularly urban – hospitals. Only 20% of health expenditure is deployed in rural areas, even though they contain 70% of China’s population.11 In the top hospitals, cancer care still largely focuses on radical therapies, with limited room for palliative 14

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S Traditional Chinese

Medicine (TCM), shown left, plays an important role in cancer care in China. It may assist in supportive and palliative care by reducing the side effects of conventional treatment and improving quality of life. Herbal medicine is the most frequently applied TCM therapy. S Acupuncture, shown right, is often used to manage cancer-related symptoms such as pain and gastrointestinal dysfunction. It could be considered as a complementary form of palliative care among cancer patients, especially when conventional care options are limited.

care.12 The palliative care services that do exist are also distributed very unevenly, centring on major cities such as Beijing, Shanghai and Guangzhou.6

Medical attitudes Although there are more than 10,000 staff working in palliative care in Mainland China,13 the large population means that they are in severely short supply. In China, some medical staff are not confident when communicating with patients and families, particularly when bringing bad news. Moreover, many staff have an inadequate and incomplete understanding of the concepts underlying palliative care and its main components; palliative care is perceived by many medical staff as a ‘soft’ treatment’ that carries connotations of negativity and inactivity. Pain has long been considered as a major problem and concern of patients with advanced cancer, and pain management for these patients is key to meeting their needs. One commonly used measure of a health system’s ability to manage pain is a country’s consumption of opioid drugs for legal distribution. A 2016 paper published in The Lancet indicated that dosage of opioid analgesics per million people per day has increased from 29 g in the period of 2001–2003 to 91 g in 2011–2013, while the total amount distributed has increased from 13,208 kg in 2001–2003 to 44,683 kg in 2011–2013.14 Nevertheless, consumption of opioid analgesics in China is still very low compared to most other countries (see Figure 1, opposite). One of the factors that comes into play here is that doctors, restricted by lack of knowledge and traditional views, worry that patients will become addicted to opioids. European Journal of Palliative Care | 2017; 24(1)


national viewpoint

Social and political factors Even though palliative care has increasingly received attention in China, compared to other areas in healthcare, there is little support for palliative care from Chinese social structures and government, in terms of policy and financial support. For example, the costs of palliative care are not fully reimbursed in the health insurance system. While there are clinical guidelines regarding symptom control, there are only limited guidelines on palliative care for particular conditions.17 Medicines for palliative care are mostly stored in tertiary hospitals, meaning that patient access to these drugs is restricted, and very few hospitals have formed professional palliative care teams; there are also only limited communitybased or home-based palliative care services.

Education and research Palliative care is most likely to be an optional module for medical students in China, and it is still not an independent discipline. This has led to the long-term shortage of professional palliative care staff and has encouraged poor practice. In terms of research, there have been only 41 registered trials in palliative care in China.18 Three of these investigated early palliative care, cognitive behaviour interventions and the treatment of related symptoms, such as constipation. Studies that focused on palliative care for gastric cancer European Journal of Palliative Care | 2017; 24(1)

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Cultural attitudes Traditional Chinese culture plays a crucial role in the understanding of palliative care among Chinese people. For example, influenced by the traditional doctrines of Confucianism, Taoism and Buddhism, some Chinese people believe that a malignant tumour is a kind of karma. During treatment, such beliefs may lead patients to feel unduly pessimistic or guilty. Due to lack of knowledge of their diseases and conditions, patients and their families are usually overwhelmed by fear of death.15 Instead of being seen as the natural ending of a life cycle, in Chinese culture, death is always considered as the failure of medical treatment and care, and most Chinese people become frustrated when they hear about death and dying. It is strongly believed that ‘human beings can conquer the world at last’ in the process of treatment and care, which leads to a fixed thinking pattern that treatment and care must succeed and save lives, and that people should fight against disease until the very end.16 People find it difficult to perceive the benefits of palliative care beyond alleviating symptoms, such as psychosocial support, making it difficult to create trust between palliative care teams, patients and families.

Sources: International Narcotics Control Board; WHO population data; Pain & Policy Study Group, University of Wisconsin/WHO Collaborating Center, 2017

Figure 1. Total annual opioid consumption (morphine equivalence without methadone mg per capita) in selected countries, 2014. Medicines included are prescribed for the treatment of moderate to severe pain: fentanyl, hydromorphone, morphine, oxycodone and pethidine. Methadone is excluded because much, if not most, of it is prescribed as medication-assisted treatment of opioid dependence syndrome in many countries.

patients have shown the benefit of integrating early palliative care. Others have researched symptom management in cancer patients. However, evidence on palliative care is overall rather limited and the quality of the studies is generally poor. Compared with studies around the world, China needs more high-quality studies – qualitative, quantitative and mixed-method.

Actions needed

Palliative care in China is still in its infancy, which provides many opportunities for improvement in areas such as public awareness, research, policymaking, international cooperation and collaborations, education and training, and the development of palliative care models.

Advancing models of palliative care Exploring palliative care models that are specific to China will help to more closely meet the needs of Chinese patients and families. In pursuit of this aim, Beijing Cancer Hospital Palliative Care Centre carried out the WARM intervention for cancer patients, which incorporates aspects of Chinese culture. The acronym can be explained as follows: ● ‘W’ stands for ‘Whole’ – palliative care for cancer patients should run through the whole process, from an early point in the condition to the end of life – care should include a complete multidisciplinary team and be provided for patients and families as a whole ● ‘A’ stands for ‘Action’ and represents virtue and kindness in beneficial acts ● ‘R’ stands for ‘Re-evaluation’ and emphasises the importance of dynamic evaluation and feedback ● ‘M’ stands for ‘Manage’ and refers to the management of the patient’s symptoms and concerns by the palliative care team. www.ejpc.eu.com | 15


national viewpoint

This comprehensive palliative care model has achieved very positive outcomes in improving quality of life and symptom management in cancer patients. Such models can be taken a step further, by acknowledging local culture and traditions and incorporating them into practice. This would allow palliative care models to become more adaptable to the needs of local patients and families, which would pave the way to develop tailored and individualised models appropriate for different parts of Chinese society.13 In China, traditional Chinese medicine (TCM) has been widely applied in cancer care. A recent review by Li et al 19 of 2,964 controlled clinical studies published in China shows that the majority (72%) of studies applied different TCM therapies in combination with conventional cancer treatment. In a survey of patients and physicians on utilisation of and attitudes towards TCM therapies conducted in a Chinese cancer hospital, McQuade et al 20 found that that the use of TCM by Chinese cancer patients is exceptionally high, with 83% of patients using the traditional therapy at some point. TCM was also found to be much more commonly used than acupuncture, at 1.3%, and movement-based therapies such as qigong or tai chi, at 6.8%. Physicians are generally supportive of the use of TCM therapies but are also concerned about potential interaction with modern treatments, lack of evidence and safety. TCM therapies may also assist in supportive and palliative care by reducing 16

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S Originally

developed as a martial art many centuries ago, tai chi today is a traditional Chinese method of exercise that is practised all over the world. In China, it provides a gentle and safe way for patients with chronic disease to engage in physical exercise. Tai chi may improve patients’ functional capacity and quality of life.

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the side effects of conventional treatments and improving quality of life.21 Exploring and advancing the construction of Chinese palliative care models will ensure the integrity and uniformity of the palliative care system. Creating an all-embracing and seamless palliative care system requires the establishment of palliative care wards, community-based and home-based palliative care services, with a particular attention on psychosocial care, family support, respite care and bereavement support.

Policy and financial support Promoting palliative care as a public health strategy requires financial and policy support from government. The voices of front-line staff in palliative care, and of patients and families, should be listened to and acted upon. Areas that can be improved through such support include: ● enabling access to adequate analgesics ● enhancing training and education ● providing services according to needs ● engaging the public in advocacy initiatives ● encouraging medical insurance reforms.

Deepening international collaboration Using the platforms of CRPC and CAHPC, palliative care staff in China need to take measures that will allow them to work together with colleagues worldwide. This can be done by building up multitiered education and research collaborations, such as: European Journal of Palliative Care | 2017; 24(1)


national viewpoint ● initiating visiting scholar exchange programmes ● participating and cooperating in international multicentre clinical studies to fill the gaps in big data and high-quality studies in palliative care ● hosting and participating in international palliative care conferences ● developing a long-term partnership with bodies such as the world’s first purpose-built institute of palliative care – the Cicely Saunders Institute ● implementing outcome measures such as the Integrated Palliative care Outcome Scale (IPOS) in routine clinical practice and research, to comprehensively capture needs, problems and concerns of patients and families 22 ● introducing measures to evaluate the experience of palliative care among patients and families ● learning from other countries about their experience of the integration of early palliative care into routine anticancer treatment and care.

Promoting palliative care as a discipline There is an urgent need for China to develop palliative care as an independent discipline across all levels of education including professional training and undergraduate, master and PhD programmes. Specific skills in and knowledge of palliative care need to be learned in these settings, including: ● the aims and scope of palliative care ● attitudes toward end-stage diseases ● the treatment principles in cancer-related pain and other symptoms ● holistic assessment and care ● communication skills. Palliative care in China currently focuses primarily on cancer patients. However, palliative care worldwide is increasingly offered to noncancer patients and their families, and care for these patients should be incorporated into the scope of educational courses.

Conclusion

Can a ‘good death’ be achieved for patients with advanced disease in China? Palliative care attracts more and more public focus with the increasing incidence of advanced cancer and chronic noncancer conditions, and it is a basic human right.23 However, there is a long way to go in China in promoting and furthering the implementation of palliative care for every patient with advanced illness and their families. Great efforts are needed to further the development of innovative models of palliative care that are specifically designed for Chinese society and address issues of equality and accessibility. The first steps, perhaps, should be in staff training and raising public awareness of palliative care, death and dying n

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Declaration of interest the authors declare that there is no conflict of interest.

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Key points

S Uneven allocation of health resources, medical and cultural attitudes, and social and political factors make the speedier development of palliative care services in China highly challenging.

S Palliative care in China is still in its infancy, which provides opportunities for developing innovative models of palliative care, obtaining policy and financial support, deepening global collaborations and promoting palliative care as an independent discipline. S Professional training and more high-quality research in palliative care are needed in China.

S There is still a long way to go in China in promoting and furthering the implementation of palliative care for every patient and family in need. The first steps, perhaps, should be in staff training and raising public awareness of palliative care, death and dying. www.ejpc.eu.com | 17
