Rest in peace

Living wills have now been recognised in Shenzhen

Ms Du is a neatly dressed woman in her late forties. She has a good job as a company executive and believes in personal responsibility. She also likes to think well ahead.

To that end, she has registered a living will – a document that details her wishes for end-of-life care. That means should she become terminally ill and unable to express herself, she could still refuse life-saving treatment and die with dignity.

“A living will is about your attitude to life as well as death,” she told Shenzhen City News TV. “These extreme interventions at the end of life are only to extend life by a few days and leave the old person feeling very weak,” she added.

Du is one of around 50,000 people in China to have made a living will. But as a resident of the southern city of Shenzhen her document carries more legal weight than in most other cities since an update of the municipal medical regulations last month, which included a clause instructing medical staff to respect these documents. The rule change is expected to come into effect in 2023.

In the rest of China these ‘advance directives’ – as they are known by medical professionals – carry little authority and can confuse the situation if the document does not tally with the wishes of the dying person’s relatives.

Yet given China’s aging population and the high costs of healthcare, living wills like these could play an important role in future: potentially freeing family members from difficult decisions around opting for life extending treatments that might be painful or expensive.

“The pressure is to do something in order to appear like a good daughter,” said Ms Wang, a 45 year-old whose mother died after a long illness four years ago. “But sometimes it just better to let people go peacefully”.

Awareness of living wills is low in China and academic studies have found that most ‘Do Not Resuscitate’ orders, the critical component of living wills, are only signed a few days before a patient’s death – usually by a family member and only when it becomes clear nothing else can be done.

Mainland China ranked 53rd among 81 jurisdictions for quality of death and dying, according to a global comparison published by the Lien Centre for Palliative Care at Duke-NUS Medical School last year.

The UK, Taiwan and Hong Kong all ranked in the top 10, while mainland China placed behind Vietnam and only just above Kenya.

The report noted that dying in a high-income country with a robust health service was no guarantee of a good death – perhaps evinced by the low position of the US (43rd) and the higher ranking of Moldova (7th).

In countries with developed health care systems many patients routinely undergo marginal or non-beneficial treatments that inadvertently worsen their end-of-life experience, it said, adding that “dying at a place of choice and having access to friends and family… could matter more than marginal increases in life extension or even pain management”.

For people in mainland China there is also the issue of how to pay for expensive end-of-life care, given that government health insurance doesn’t cover the full cost of inpatient treatment.

Palliative care facilities are also rare, meaning the choice for end-of-life is hospitals – with all the attendant costs and gadgets – or homes, where pain and symptom management is harder.

Shenzhen’s new regulations don’t help with the shortage of palliative care centres but they at least allow patients to express a view on where and how they would like to spend their last days.

The new rules require that the living wills deal directly with questions of intubation, resuscitation and the use of life support. To have legal effect they must also be notarised and witnessed by two people who are not involved in the patient’s medical care.

Wang Yu from the department of Medical Ethics and Law at Peking University believes allowing people a degree of control over their final days is a mark of a “civilised society”.

“There comes a point when medicine has to send people away and allow them to leave with dignity,” he told China National Radio.

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