By Daoxin Yin1, 2，Mai Wang1, 2，Luxia Zhang1, 2, 3
1. National Institute of Health Data Science at Peking University, Beijing, China;
2. Advanced Institute of Information Technology, Peking University, Hangzhou, China
3. Renal Division, Department of Medicine, Peking University First Hospital, Peking University Institute of Nephrology, Beijing, China;
Luxia Zhang, MD, MPH
National Institute of Health Data Science at Peking University;
38 Xueyuan Road, Haidian District, Beijing 100191, China
People only live once. That is also true for death. Traditionally, death is a taboo subject in Chinese culture. It is believed that “death” is an ominous word, and talking about it will bring bad fortune. That might explain why when patients realize their terminal conditions, they and their important others usually find themselves totally unprepared for the inevitability. But things may have been changing recently.
Shenzhen (frequently a pilot city for measures with a chance of being nationalized) recently became the first city in mainland China to bring the living will into law in July 2022.1 Living will legislation, going into effect on Jan 1 2023, empowers Shenzhen residents by giving them the right to decide how they should be treated at the end stage of their lives.1 Healthcare providers are required to respect the terms of the will, and it is a form of advance care planning.
The awareness of mortality can motivate people to think about what matters most in their lives, derived from their core values, affecting their medical decisions in their last days. By planning ahead, people can have control over what kind of medical care they prefer to receive, or not. On the other hand, the caregivers, next of kin and and relatives can also be relieved from such decision-making burden, especially when their loved-one deteriorates or is less able to communicate their views. From the perspectives of clinicians and healthcare settings, a living will is helpful in addressing or even reducing disagreements on medical interventions.
For patients with incurable diseases, the medical communication and decision-making model usually only includes doctors and relatives in China. Family members of the patients incline to choose the treatments to prolong life under social pressure. They also decide what information should be shared with patients and whether doctors should tell patients their real conditions to avoid “frightening or hurting” patients.
This model is under challenge now since the living will legislation clarifies patient autonomy. Doctors were trained to be updated with evidence and knowledge on new treatments and procedures that promise to cure or prolong lives. But when curing is impossible, clinicians can feel ill-equipped to engage in honest conversations with patients. This is partly because it is always hard to account for the uncertainty inherent in diseases and medical decision-making. Meanwhile, it can expose the inadequacy of the doctor’s role in medical practice.
Dr. Atul Gawande, in his book Being Mortal, described three types of the doctor-patient relationship— “paternalistic,” “informative,” and “interpretive.” 2 In the interpretative relationship—the most recommended one, the doctor’s role is “to help patients determine what they want.”2 By asking questions, doctors help patients figure out the priorities in their lives instead of just providing treatment options.
Living will legislation provides an opportunity for Chinese doctors to revisit the relationship with their patients. Indeed, helping patients make such high-stake decisions needs expertise, patience, and empathy, and even that may not be enough. In our practice, we sometimes observe patients and their next of kin who appear to have sufficient information, but in fact, they can get lost in too many options. To make critical decisions, patients need to understand the trade-offs in available treatments and, more importantly, what matters most to them and how they would like to spend their remaining days and weeks. To help patients fulfil this purpose, doctors should review and reposition their roles when providing advice in such conversations.
If a living will is ever to protect a patients’ values and dignity adequately, then it will also depend on the capacity of hospice and palliative care to help and offer active symptom-control approaches. The challenge in China remains, that even if patients decide to accept end-of-life care approaches, together with or rather than more aggressive treatment regimens, they may not find resources to meet the physical, psychological, and spiritual needs and maximize comfort. The Economist Intelligence Unit ranked China 71 out of 80 countries for providing end-of-life care.3 And its 1.4 billion population is ageing, China faces an even greater challenge of undersupply of palliative care.
China’s National Health Commission made public guidance on palliative care in 2017 4 and selected the first round of 5 pilot cities or districts to promote hospice services.5 The hospice centers increased from 35 to 61, providing hospice care to 283,000 patients in 2018.5 It is encouraging, but not enough, considering the scale of China’s population. In 2019, another 71 pilot cities or districts were selected to build on the previous efforts.4
Shenzhen’s living will legislation is ground-breaking in being a step towards putting the patient at the centre of a very medically dominated system, protecting patients’ dignity and their right to decide on future care directions. Making it scalable certainly requires continuous investment to establish hospice care centers, strengthen the professional capacity building and social support mechanisms, and raise awareness for patients and their next of kin. This is as urgent a priority, as any. One could say that it is an urgent life or death matter.
- Yin C. ‘Living will’ regulation to debut in Shenzhen: China Daily; 2022
- Gawande A. Being mortal. Medicine and what matters in the end. Kindle ed: Henry Holt and Company, 2014:200-01.
- Unit TEI. The 2015 Quality of Death Index—Ranking palliative care across the world., 2015.
- Yan Y, Zhang H, Gao W, et al. Current awareness of palliative care in China. Lancet Glob Health 2020;8(3):e333-e35. doi: 10.1016/S2214-109X(20)30006-1 [published Online First: 2020/02/23]
- Dong X. Rapid development of palliative care services nationwide, serving 283,000 patients last year: Xinhua Net; 2019