Dying with Dignity

A combination of an underdeveloped palliative care system, lawsuit fears and limited resources means China’s terminally ill patients are largely being left to a slow, often painful end to their suffering. Chen Xiaolu and Luo Diandian, children of celebrated senior Communist Party members Chen Yi and Luo Ruiqing, watched their parents die in unnecessary pain, due to political norms decreeing the officials were to be kept alive as long as possible. In recent years, they have led the first awareness movements for the concept of dying with dignity, founding the Beijing Living Will Promotion Association in 2013 to advocate palliative care. Palliative care is a variation of end-of-life care that focuses on providing relief from symptoms and helping families cope through the illness and bereavement process. Palliative care is only just debuting in China. Unlike the U.S., where use of palliative sedatives like morphine has been given guidelines, published by the U.S.-based National Comprehensive Cancer Network, doctors in China do not have access to such guidelines. In light of the already tense doctor-patient relationships, many doctors would not dare to promote the remedy due to fear of the potential legal and professional consequences. Resources for community health care or in-home hospice care are even scarcer. Patients who cannot undergo further surgery, chemotherapy or radiotherapy are often unable to stay in large hospitals but a 2013 hospice care study in Shanghai found the city’s hospitals are only equipped to provide alternative hospice care to 0.28 percent of cancer patients per year – 234 patients out of hundreds of thousands. Beijing’s Desheng Community Health Care Service Center is the only community health center in Beijing that provides palliative care and its organisational and funding difficulties encapsulate the lack of structural support. Only two full time doctors provide in-home and in-patient care for 300 patients, primarily with untreatable, advanced-stage cancer and other chronic diseases. The Beijing government disregards hospice care services in official doctor assessments, meaning the exhausting workload is almost never adequately compensated, thus reducing incentive for more doctors to contribute. The center charges the Beijing government’s standard 40 yuan for house calls but in-home pain assessments, grief counselling and other services are provided for free by trained volunteers because there is no government-mandated fee standard. However, Lu Qi, one of the doctors at Desheng, says they are in dire need of support and that their current expenditure is quickly becoming unsustainable. Government support for hospice care at a community level could also reduce strain on hospital resources, resulting in economic benefits. The average 3,100 yuan for in-patient daily fees at smaller Beijing hospitals are priced at about 250 yuan at the Dasheng center, for the same services. According to researchers at Shanghai’s Fudan University, China is expected to have over 400 million senior citizens by 2050, the world’s largest ratio of seniors to the overall population. The need to re-evaluate the care given to those struggling towards the end grows more dire, as the population continues to age and health demands rise. For Caixin Online, this is Christina Guo. 在中国，高官的悼词中，往往有一句“经积极抢救医治无效”。临终时动用一切生命维持器械，似乎代表着惟一正确而有尊严的死法。 然而一些目睹父辈历经痛苦抢救过程的“红二代”们，却有另一种感受。 “我们能不能让患者在临终的时候享受缓和医疗，按照自己的意愿，更加舒服而有尊严地离世？”开国将帅罗瑞卿的女儿罗点点和陈毅之子陈小鲁，从组建一个圈内的“不插管俱乐部”开始，成立生前预嘱推广协会，建立“选择与尊严”网站，推动缓和医疗，力图阐释一种新的“生死观”。 至今，已有2万多人在网上签署“生前预嘱”，交代自己在不可治愈的伤病末期要或不要哪种医疗护理等“五个愿望”。 罗点点和陈小鲁呼吁的缓和医疗，并非独创或新潮流。在世界范围内，癌症缓和医疗早已是世界卫生组织全球癌症预防和控制策略的四大战略目标之一。但在中国，仍旧鲜为人知。 现代缓和医学起源于一场基督教人士发起的临终关怀运动。1967年，英国圣公会护士桑德斯（Cicely Saunders）启用了圣克里斯多夫临终关怀院（St.Christopher’s Hospice Houses ），专门收治生命不超过六个月的病人，让他们在生命的最后时光得以尽量舒适、有尊严、有准备和平静地离世。 缓和医疗的魅力在于，它照顾到患者和家人“身、心、社、灵”四个层面，力图在最大程度上使患者在人生的最后一程远离痛苦，有尊严地离去。 在中国践行缓和医疗的先行者们看到，目前人口深度老龄化，恶性肿瘤成死因之首，卫生资源短缺，末期病人生活悲惨。如此现状下，人们对于这种更有尊严、更温暖、更经济的死法，需求极大。