Cultural differences require a different approach for end-of-life care in China

by Li Binli
China’s aging population has increased to approximately 200 million and is larger than that of the whole of Europe. So the number of older patients is increasing with time. Meanwhile, thousands of hospitals have established an ICU in the last 20 years, and this has brought about a grim problem. For example, more and more older patients, who would have died within a short period of time in the past, may now achieve long-term survival. For these patients, intensive care just means extended life or postponed death. These hopeless patients occupy an already scarce medical resource, and this makes it impossible for some critically ill patients to receive effective treatment. Owing to the influence of Chinese traditional ethics and the lack of corresponding laws and regulations, overtreatment of hopeless patients frequently takes place. In fact, it is a futile treatment. Chinese society needs to develop approaches to address the appropriate delivery of critical care to the increasing population of older people, especially those with chronic life-limiting disease.

A retired Beijing doctor campaigns for living wills and dying with dignity

Retired cardiologist Luo Diandian says there are taboos and poor awareness for end of life care even among medical staff

In the Beijing Union Hospital's geriatric ward, a 77-year-old man lies in bed, with a long breathing pipe in his throat. Suffering from chronic obstructive pulmonary disease, a balloon-sized alveolus in his lungs once prevented him from breathing. 


"We saved his life with a breathing machine, but we were told never to pull it out afterwards," Liu Xiaohong, the director of the geriatrics section, remembered of when the man was first admitted in March 2009.

Today, due to having spent more than three years in bed, the old man also suffers from a series of complications, living in agony due to the feeding tube and urethral probe needed to keep him alive. 

Still conscious, the old man cannot help but complain to his children, "Why don't you listen to me? I don't want to have such a painful life." 

This case is by no means an isolated one. Thanks to the rapid development of life-support treatment, natural deaths, especially for the elderly or those suffering from incurable diseases, have been drastically changed.

"With artificial breathing and heart pumping, life-support treatment makes it possible to keep a patient from death, but it is only technically being alive, with no quality or dignity of life," said Luo Diandian, a retired cardiologist.
After witnessing numerous deaths at work, Luo, together with some of her friends, is now actively advocating "living wills," giving patients the right to choose to die in dignity, instead of lingering for ages in the ICU. Behind thick glass walls, critically ill patients are naked under white quilts, covered in life-support mechanisms, tubes and drips.
Luo, 61, now a writer, believes it is her fear of dying in the ICU with no loved ones around that prompted her to start a website named "Choice and Dignity" in 2006 so as to help spread the message to the public. "It's something that every individual who cares about the quality of life will consider. As a clinician, I know exactly what's going to happen to me at the very final stage of my life, and with this living will, I can at least free myself, as well as my family, from this dilemma," said Luo.
The US "Five Wishes" form of living will, created by the NGO Aging with Dignity, has been widely applied in 42 states and the District of Columbia. The Chinese version "My five wishes," in plain language, lists out what a patient wants or not, such as the circumstances of their medical services and life support treatment, if so desired.
Luo emphasized that based on the WHO definition of the "final stage of life," a living will is valid when the person is diagnosed with a terminal disease and has been clinically estimated as having a life span of less than six months. The person must also no longer be able to full express their views on their health problems. 
However, the doctors reached by the Global Times all agreed that medical staff from different countries would have very different opinions in terms of a dying patient's survival rate. To this, Luo emphasized that instead of providing a fixed answer to the questions posed by the concept of "dying in dignity," the living will simply offers another option for healthy people to start thinking of how they wish to die.
"While there is a default consensus under China's current healthcare, social and cultural system that as long as the patient doesn't have financial issues, doctors have no rights to stop or give up medical treatment, including always doing everything to save a dying and terminal patient, the living will allows them to go beyond the status quo," Luo explained.
"For those who have a very strong survival instinct and fight heroically to stay alive no matter how painful it is, I have nothing but respect. It doesn't conflict with my concept as long as they feel it's a dignified and graceful death," Luo emphasized.
Read the full article at: Global Times

End of life care discussion in China

Discussions about dignified dying are no longer a taboo in China

by Zhao Xu
It's been nearly six weeks since her 82-year-old mother died, but Huang Yuan still cringes when she remembers the glimpses she caught of the elderly woman behind the thick glass wall of the intensive care unit. It's a wall that separates, often once and for all, the realm of the living and the immediate, dark corridor leading to the world of death.
"My mother had lost the ability to expectorate. So to prevent her from choking on the phlegm building up in her throat, the doctors decided to place her face down," said Huang, taking long, hard pauses between words as she tried to simultaneously recall but also blunt the painful memories.
"Mom remained there, her head hanging over the edge of the bed and her forehead supported by a cushioned chair. The combined effects of the illness and gravity had given her a swollen face. It was so bad she could barely open her eyes. Moreover, her lips had been constantly acted on by the same forces, to the point that even when she was temporarily restored to her normal, lying position on the bed, they were fixed in a terrible expression, parted, elongated."
The intense suffering was witnessed by the dying woman's seven heartbroken daughters. It sparked a long, often furious, yet ultimately inconclusive, debate among them as to whether their mother was paying too high a price for a chance of recovery so slim that it almost didn't exist.
"What did she want - life or relief from the pain? We are still haunted by that question and will be forever," said Huang.
"Maybe they didn't have to decide and suffer perennial torment over whatever decision they made," said retired cardiologist Luo Diandian. Luo is now a writer whose own experience of her mother-in-law's death, allied to her exposure to Western medical ideas and practices regarding terminal illnesses, combined to make her a strong advocate of so-called Living Wills.
"As the names suggests, a living will is a clear expression of what a person wants and, just as importantly, doesn't want, when it comes to the handling of his or her illness in its very final stage. The core centers on the medical treatment," she said. "For example, a person can specify whether or not he or she will opt for all, or just a certain part of the life-support measures, ranging from being fed by tube and mechanical ventilation, to dialysis and defibrilation."
Two things are emphasized when a person is considering making a will of this kind. First, a living will can be changed whenever the testator wishes, with the final version being the last one made while he or she was still capable of doing so, either in written or oral form. Second, for a living will to be officially valid, the testator must be diagnosed with a terminal illness and a clinically estimated life span of less than six months. In addition, the person must not have expressed any wishes to the contrary.
In some parts of the United States and Canada, the concept of the living will has become so entrenched that it's now considered a basic human right and is legally protected, according to Luo. Although making a will is not compulsory, people are likely to be advised to seriously consider writing one, once they enter adulthood.
So why don't more people embrace this concept and assert control over their exit from the world? The answer is complicated and can be rendered impenetrable by the welter of implications relating to death.
'Bound by sensitivity'
Weng Li, an attending physician at Peking Union Medical College Hospital in Beijing, where Wang's mother spent her last days, wrestles with complexities such as this every day.
"Unlike their Western counterparts, who are legally obliged to tell the full truth directly to their patients, Chinese doctors seem to be 'bound by sensitivity' to conceal the painful reality from their patients, but instead will tell the family members something closer to the truth," conceded Weng. "It's a cultural issue, but when it comes to writing a living will, the underlying contradiction is: How can you ask someone to seriously consider the option, while making every effort to convince him or her that they are not going to die?"
He said that neither the doctors nor the relatives should be blamed. "For the majority of Chinese people, death is still too frightening a thought to face honestly. You might be doing the patient a disservice by plunging them into an ocean of fear where they will simply drown," he said.
Huang, whose father died of gastric cardia cancer in 2008, is a believer in "not telling".
"When the cancer was first diagnosed, we were told to be prepared for his death within six months, but dad lasted another three and half years," she said. "Throughout that time, we never mentioned it and he never really asked. I had the feeling that he had started to sense the deadline approaching, but that wasn't until the very end of his life. Keep him in the dark, or under the sun? It could be both."
In other words, the significance of "the will" notwithstanding, a dying person's often implicitly expressed desire to talk only about survival should be fully respected. And in this case, to be an accomplice in the denial of a hard and imminent truth may be the ultimate demonstration of love, even though it often exacts a tremendous emotional price on those closest to the dying and may deprive both parties of the chance of saying a proper goodbye.
In 2006, Luo set up a website, www.xzyzy.com, and started recruiting volunteers to spread her message. But, despite her continuing efforts, she has only managed to have brochures displayed in one private hospital in Beijing. Refusal is often based on the grounds that such a graphic representation of death, often unsparing in its evaluation of each and every treatment and the potential revival measures required, is potentially offensive and may be at variance with a doctor's mission to save lives.
"When the odds are overwhelmingly stacked against the patient, and death becomes destiny, a doctor's first priority automatically changes from enabling life to easing its end. It's also the time when the doctor should stop being 'aggressive', take a conscious step back and let the patient decide what's the best for him or her," said Liu Duanqi, a former director of the oncology department at Beijing's General Army Hospital, who spent his working life treating terminal cancer patients. "Sadly, in reality, the majority of patients are dragged by their 'ever-dutiful' doctors all the way through their last, physically and emotionally ravaging journey."
There's a tendency to blame the profit motive, because hospitals are often attacked for being driven by financial self-interest, and there's also a fear that some doctors may "persuade" dying patients to undergo harsh, experimental treatment for research purposes, he said.
However, according to Liu, the lack of education about death provided to Chinese medical students is at the heart of the problem.
"Ask a patient whether he wants to live or not and that person will most definitely say yes. But, if you change the question to whether he is willing to endure this or that in order to live just one more week, you might get a different answer. With all their professional knowledge, empathy and skills, doctors can take a guiding role, even from behind the scenes," said Liu.
The reluctance, or possibly inability, of many Chinese doctors to engage patients and their families in sensitive and meaningful discussion about the range of possible choices and potential results often leads to unfounded hope, sudden disillusionment and ultimately anger and despair, according to Liu.
"Despite their general feeling of being wronged, these doctors have, in effect, robbed their dying patients of their last opportunity to make sensible, well-informed decisions," he said.
"And for people with high-level medical insurance, to prolong the process of death at the taxpayers' expense constitutes, for me, a form of social injustice."
The depth of understanding and the courage shown by a person in the face of impending death is the best and most generous parting gift those left behind will ever receive.
Chen Zuobing, director of the emergency department at the First Hospital of Zhejiang University in Hangzhou, East China, knows all about that. His father was diagnosed with terminal-stage peritoneal cancer in July, 2011. After a short, yet intense period of wavering that proved all-consuming, Chen helped his 77-year-old father face the stark reality.
After deciding against chemotherapy, the elderly man left the hospital where his son worked and returned to his home in the countryside. He planted pumpkins and played with the neighborhood children until his deteriorating health prevented him from doing so. Nine months later, in April, he died quietly at home.
"I gave my father the choice and he proved himself a hero," said Chen.
While stressing that she puts quality of life above quantity, Luo insisted that there's absolutely nothing wrong if a person decides "not to become reconciled to the idea of mortality, and to fight to the very bitter end".
"The idea of a graceful death has always been controversial. To me, the commitment to continued existence, no matter how much pain it entails, requires just as much courage," she said. "The purpose of a living will is to fulfill one's last wishes. Any decision that is truly heartfelt is heroic and fully dignified."
Read more: China Daily

Oncologists and palliative care doctors meet to discuss dying with dignity

"Death with dignity has been almost absent in the final stage of medical treatment in China."

by Zhou Heyang
A group of top doctors in the fields of oncology and palliative care have gathered in Beijing Oncology Hospital to discuss the future development of hospice care in China. One important issue on their agenda is publicizing the idea of hospice care and death with dignity to the general public.
When the final curtain call draws, how should you greet it? Some patients in the last phases of a fatal disease choose to not receive final treatment and plan a peaceful and comfortable farewell to the world. This decision is called death with dignity.
The term applies to a doctor's actions in agreeing to withhold medical treatment from a terminally ill patient. The patient can decide on details, such as to spend the last days at home and who should be present. A written agreement called Advanced Care Planning is signed in such situations in many Western countries. In other cases, this decision is made by a family member.
Ning Xiaohong, Doctor of Internal Oncology at Xiehe Hospital talks about this blank that needs to be filled in China:
"We see severe pain in cancer patients, such brutal pain inflicted on the human body that it makes us doctors feel their pain, too. Death with dignity has been almost absent in the final stage of medical treatment in China. Modern medical methods cannot alleviate the suffering in many of these cases. Doctors don't have a protocol to follow. And the public does not know death does not always have to be so painful and scary. The public needs to know it is an option."
Death is seen as a taboo subject that people are afraid to face or even discuss in China. In fact, death with dignity focuses on bringing comfort, self-respect, and tranquility to people in the final stage of their life. Patients' symptoms and pain are controlled, goals of care are discussed and emotional needs are supported.
Chen Zuobing, after discussing the issue with his severely ill father who preferred death with dignity, decided to fulfill the old man's wish. His father returned to his hometown and lived his final days without the disturbance of modern medicine.
"There is no right or wrong in making this decision. If the person receives full-scale treatment to the last moment, it is great that his family can hold on to him for another second. But if one refuses the extensive treatment, he can pass without the pain brought by medicine and in a dignified manner. Isn't it better this way?"
Death with dignity should not be confused with euthanasia which is the intentional termination of the person's life with consent to relieve pain. Death with dignity allows natural death without medical intervention during the last stage of a fatally ill patient.
Doctor Liu Duanqi at Beijing Oncology Hospital is an oncology expert says 99 percent of patients who suffer from last stage pancreas or liver cancer pass away. He explains that death with dignity touches on the core of medical care.
"Doctors and medicine are only capable to help and assist the patient. In many terminally-ill medical cases especially the chronic and consumptive diseases, doctors can't change the course of nature. The preoccupation is for the doctor to act according to the will of the patient."
Death with dignity is about giving the patient back the freedom of choice to decide on what treatment to receive at the final moment. In this way, dignity is upheld for the sufferer. It includes a written agreement stating the patient's decision prior to treatment. Such a document is called an Advance Care Plan, which is not formally introduced in China yet. It includes a living will and the durable power of attorney for health care. It allows another person to have a say in the health care treatment one will receive if one is too sick to speak for him or herself. By discussing and documenting one's wishes, the family and health care team will be better able to act on the person's behalf.
When one's wishes are fulfilled, one can wave goodbye without regret. Family and friends will feel less distress as well.
Source: CRI

Fighting for the right to die in China

A 'Choice and Dignity' in death movement has the support of doctors in China

by Zhang Fang
Luo Diandian didn’t realize it was a big deal to start a “no tubes at your last moment” club until she personally made a life-or-death decision for her family member a few years ago, China Youth Daily reported.
Luo’s mother-in-law was hospitalized for diabetes, but suddenly suffered a cardiac arrest after choking on sputum. Doctors put her on respirators, which could not treat her condition but only prolong her life. Finally, Luo and her family made a difficult decision to take her off life support and let her go.
After a few months, Luo found a note from her mother-in-law’s diary, which said that she did not wish to be excessively resuscitated if her death was imminent. Luo felt a big relief, realizing that she made the right choice.
A former doctor, Luo and her friends built an informal club based on that simple idea.
With modern medical technology, a person’s time of death often occurs shortly after the point when life support equipment is shut down. Luo said she believes that patients should have right to decide how to die. But she had no idea that she would eventually make career out of fighting for her beliefs.
After her mother-in-law passed away, she found an end-of-life document from the U.S. called “Five Wishes”, which allows people to write down a living will about their personal, emotional and spiritual needs as well as their medical wishes. Currently, more than four million Americans use this legal document.
“If people sign a document like this, their family would know their final wishes.” Luo said. “It’s a really big deal to give a person the right to die.”
In 2006, Luo decided to set up a formal website called “Choice and Dignity”, which promotes a dignified end to life. The site allows people to write down a living will when they are still consciously able. Since its inception, the site has garnered 870,000 page views.
People can tell their family the way they want to leave the world, including specifying whether or not they want life support, Luo said.
In addition to elderly patients, China’s medical community has taken notice of Luo’s passionate views.
“What Luo Diandian is doing is really important in China,” said Dr. Liu Ruiqi, vice sectary of Chinese Anti-Cancer Association and former Oncology director of the Military General Hospital of Beijing.
After more than 40 years as a doctor, Liu has experienced more than 2,000 death cases and heard many sad stories from his patients. He said he doesn’t agree that patients should spend their last minutes on chemotherapy or in the Intensive Care Unit (ICU). Sometimes, he tells his patients in terminal stages of cancer to buy a ticket and travel around the world rather than get useless treatments. These opinions, however, rarely get support from his peers or patients’ families, he said.
Liu said the ICU is the last place he wants to go in a hospital, though it has the most advanced equipments. He said he doesn’t know whether patients in the ICU are “people or just experimental animals.”
Most people spend 75 percent of the medical expenses on treatments which occur shortly before their death, the China Youth Daily report said. China’s traditional concept of filial duty, instead of doctors’ suggestions, often leads family members to press for continuation of chemotherapy treatments or extensive ICU stays.
Xu, one such family member, decided to pursue aggressive treatment for his father’s lung cancer. He spent hundreds of thousands of yuan to pay for his father’s treatment, but has no regret.
“If you can barely live, how can you talk about dignity? Dignity is supposed to help you live better, not to die,” Xu said. He said he believes that stopping treatment is “not the grounds of morality.”Xu said he disagrees with Chen Zuobing, a doctor who decided to give his 78 year old-father no treatment for late-stage cancer.
Chen, a doctor in the First Affiliated Hospital of Zhejiang University Medical School, said his father’s final days were peaceful and happy. His father went back to his hometown directly from the hospital, said goodbye to every family member, had last Spring Festival with his family, and took a family portrait before he died.
When Chen’s story was featured on a TV show, he received much criticism ― even hateful responses ― from viewers. Chen said he still believes the move was the right choice. Also appearing on the show, Luo fully supported Chen’s decision and almost got into a fight with the opposition side.
Indeed, Luo has run into her own problems while promoting her “die with dignity” philosophy. In China, people don’t like to talk about death most of the time, not to mention choosing to give up on treatment.
Undaunted, Luo said she will continue anyway, and will donate all her organs at the end of her life. She will be happy to see her skeleton hanging in a doctor’s office, she said.
Read more: China Youth Daily