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What medical treatment are you willing to receive before you pass away？
Would you accept life-support treatment if that was the only way to keep you alive？
Who would you want to trust with your healthcare decisions when you are unable to make them yourself？
All these questions come from a “living will” available on the public website Choice and Dignity （www.xzyzy.com）. It is the first website in China helping people write up their own living will—a document to make known their wishes regarding life-prolonging medical treatment when they are not capable of stating them outright. There are five main questions to be answered explicitly on the living will. They are referred to as the “five wishes” and under each one follows a number of lesser questions that can be answered to clarify details and specifics of the person’s desires regarding treatment. Altogether there are 42 questions for people to answer on the Choice and Dignity living will.
Luo Diandian， co-founder of the website， is 62 years old and has been working as a doctor for more than 20 years. In her line of work she has seen many patients with terminal illnesses being treated in the Intensive Care Unit （ICU）. “They lie in bed with all those tubes sticking out of them and they can’t even talk or think properly，” Luo said. “It is really a painful way to live.”
Luo， together with some of her fellow doctors， formed an informal organization that they called the “no tube club，” declaring that they would not accept life-support treatment when they were nearing death.
After seeing an English document called Five Wishes online， Luo considered making a career out of the issue. Five Wishes is a document signed by more than 4 million people in the United States， choosing what treatment they do or don’t want to have with terminal illnesses.
“If people can make decisions themselves while conscious， and they can discuss their wishes with family members and friends， many unnecessary treatment and medical expenses can be reduced，” Luo said.
Unresolved debate
In the 1990s， the debate over living wills heated up in the United States when Terri Schiavo， a resident in Florida， collapsed at home after a cardiac arrest and then suffered brain damage， culminating in a persistent vegetative state.
After years of attempts to return her to a state of consciousness failed， her husband petitioned to have her feeding tube removed in order to let her pass away. However， Terri Schiavo’s parents disagreed with her husband and a legal battle commenced. With more than 10 appeals and numerous monitions， petitions and hearings， the feeding tube was removed in 2001， but reinserted after interventions. The case had spurred intensive debate all over the country and even then U.S. President George W. Bush signed legislation to keep her alive. In the end， the feeding tube was removed permanently in 2005 but the debate continued. “Terri Schiavo spent 15 years in hospital in a vegetative state. If she had made a living will before that， things would have been much simpler，” Luo said.
Chen Zuobing， a doctor at the First Affiliated Hospital of Zhejiang University Medical School in Hangzhou， east China’s Zhejiang Province， argued that Luo’s comment simplifies the matter somewhat.
After being diagnosed with late-stage cancer in April 2011， Chen’s father decided not to stay in hospital for chemotherapy， but to go back to his hometown so he could spend his last days with family and friends.
Chen’s father made the decision himself， after serious consideration. Despite this， Chen received criticism from many people all over the country after his father’s story was featured on TV. “Some people didn’t under-stand why I would agree with my father and prevent him from getting treatment. They said that I had killed my father，” Chen said.“But I have never regretted my decision. My father passed away peacefully and did many things that he wouldn’t have been able to if he stayed hospitalized.”
“In China， if a person’s children don’t try every treatment possible to prolong their parents’ lives， they will be considered unfilial， which is a grave judgment on your character，” said Luo， who revealed that she had to make a similar decision as Chen when her mother-in-law was diagnosed with a terminal illness.
“Seeing my mother-in-law in bed at the ICU with all the tubes sticking out of her， I collapsed emotionally，” Luo said. “Things are different when you are in that situation no matter how level-headed you thought you would be.”
Luo finally decided to cease life-support treatment for her mother-in-law， but she still feared the decision was the wrong one until she saw a note that her mother-in-law had left， saying that at the end of her life， Luo had the right to decide on what medical treatment she should receive.
“Death is a big thing for everybody， and as long as a person is still breathing， other people consider them to be alive，” said Chen Xiaolu， who co-founded the website Choice and Dignity with Luo.
Chen Xiaolu’s father， Chen Yi （1901-72）， former Vice Premier and Foreign Minister， spent his last days in hospital and suffered greatly during his cancer treatment.
“As soon as a person has a terminal illness， the family members’ first reactions are normally to spare no effort and use the most expensive treatment and medicine available to prolong his or her life，” Chen Xiaolu said. “But maybe that is not what the patient wants.” Facing taboos
After setting up the website， Luo frequently goes to hospitals to spread the idea of making a living will and how it can help a person die with dignity， but the feedback is mostly negative.
“Hospitals are considered to be a place that can cure people and bring the dying back to life. Even though many people pass away in hospital， people would prefer to ignore that，” Luo said.
In Luo’s eyes， education on death is a must for the Chinese people as it is the natural end for everybody， but many people refuse to face it rationally. “We are always told how precious life is but seldom taught how to face death. We need to learn to face it with a peaceful frame of mind， and not to fear it，” she noted.
But Luo said she doesn’t expect that life education can be spread universally or accepted quickly. “It is not practical in China. We just want more people to think about it and gradually we can talk about death in a rational and levelheaded manner，” Luo said.
Weng Li， a physician at Peking Union Medical College Hospital in Beijing， revealed that relatives are inclined not to tell patients about their terminal illness， which makes the execution of living wills more complicated.
“Chinese doctors seem to be ‘bound by sensitivity’ to conceal the painful reality from their patients，” Weng said. “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？”
Weng 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 head on. You might be doing the patient a disservice by plunging them into an ocean of fear where they will simply drown，” he said.
“Ask a patient whether he or she 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 role in guiding patients and families， even from behind the scenes，”said Liu Duanqi， a former director at the Oncology Department of the Military General Hospital in Beijing.
Having seen more than 2，000 cancer patients die under his care over the past 40 years， Liu is a strong advocate of the “dying in dignity”campaign. The reluctance， or possibly the inability， of many Chinese doctors to engage patients and their families in a 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.”
Palliative care
For Ma Xiaojing， a Shanghai resident who has been working as a volunteer providing palliative care for quite a few years， there are ways other than just prolonging a patient’s life with medical devices that can make him or her feel better.
“Many people with terminal illnesses are in a lot of pain and are scared by the end of their lives， which also makes the relatives worry，” Ma said. “But the way that their relatives relieve the worry is to send them to hospital and get more medical treatment.”
Ma has been with many ailing people who have less than six months left. “They need patience and the company of their family members. Many seniors want to talk more about their memories and we need to be good listeners and chat with them during this difficult time，” Ma said.
Ma once helped a 60-year-old man with uremia find a friend he lost contact with for more than 30 years and this became the man’s happiest memory in the last days of his life.
“They need emotional care more than medical treatment after they accept the fact that there is only short time left for them，” said Ma， who brings flowers for her patients as well as cards with warm words.
For Ma， who is working as director of Shanghai Hand in Hand Life Care Developing Center， the worry is how to get more investment and volunteers involved in palliative care.
According to Ma， There are about 50，000 patients diagnosed with cancer in Shanghai every year and more than 40，000 pass away in the same time frame. The number of volunteers working for these patients is only about 200 and some of the volunteers cannot work long hours.
The situation is the same in Beijing. Xiangning Palliative Care Center， affiliated with Beijing Cancer Hospital， declared its closure in 2010 after 10 years of operation due to a lack of financial support. Beijing Songtang Palliative Care Center， founded in 1987 as the first one of its kind in China， also struggles with a lack of money and staff， according to President Zhu Lin.
“As China is facing an aging society， the demand for palliative care is growing but the current situation is not optimistic，”Zhu said.
For Zhu， patients choosing to come and stay in the palliative care center normally already know about their disease and have decided to pass away in a relatively peaceful way. However， medical universities normally attach less importance to the education in this field， and as a result it is hard to get enough well-trained staff and volunteers from colleges often cannot work permanently.
Luo says the lack of palliative treatment training in most of China’s medical schools makes it hard to push the concept forward.
“The teachers only try to teach would-be doctors how to save a person’s life and not how to help dying patients leave the world in a comfortable and dignified manner，” said Luo， whose views are echoed by Xi Xiuming， President of Fuxing Hospital affiliated to Capital Medical University in Beijing.
“The hi-tech aspect of medical science today has largely led to the deconstruction of human nature in the post-industrial era， and medicine has deviated from its original intent to provide of humanistic care and created many ethical dilemmas，” Xi said.
Legal powers
“When we talk about death with dignity， people always connect this with euthanasia， which is not the same thing at all，” Luo said. “We encourage people to make their own choice on their medical treatment at the end of their lives and euthanasia is only one of the many choices that a patient can decide on.”
On June 25， with the permission of Beijing Civil Affairs Bureau， the Beijing Living Will Promotion Association was set up after six years of effort from Luo and Chen Xiaolu. Some key hospitals including Peking Union Medical College Hospital and Fuxing Hospital affiliated to Capital Medical University joined the association as part of a pilot program for promoting living wills.
However， this does not give the association or the living wills of patients any legal power. “If relatives of a dying patient refuse to follow his or her living will， we can’t do anything，” Luo said.
Xi said that living wills have raised the profile of such discussions and will become vital as the country sees more patients suffering from incurable diseases that need to consider how to spend last days of their lives. In 2010， Xi started the practice of encouraging dying patients to sign a document allowing doctors to withdraw or withhold medical treatment. More than 10 patients signed the document in 2010.
However， he admitted that besides discussing this topic with a few of his very close friends or patients， his only attempt to promote this concept among a bigger group of cancer patients was met with resistance.
Xi said that there are many complicated situations that have to be considered when promoting living wills.
“When people make their living wills， they are mostly in a relatively healthy condition， but their feelings and decisions might change when they are in a serious condition. What if they want to change their stance but can’t express it？” asked Xi.
Luo， however， said that she still feels confident that the concept will be gradually recognized as more and more people pursue a higher quality of life.
“We are not encouraging everybody to give up efforts in prolonging their life or that of their relatives. We are also not encouraging them to give up all medical treatment. Our priority is to give patients the right to choose，” Luo said. “No matter what their choice is， we should respect that. We call this dignity.”
Would you accept life-support treatment if that was the only way to keep you alive？
Who would you want to trust with your healthcare decisions when you are unable to make them yourself？
All these questions come from a “living will” available on the public website Choice and Dignity （www.xzyzy.com）. It is the first website in China helping people write up their own living will—a document to make known their wishes regarding life-prolonging medical treatment when they are not capable of stating them outright. There are five main questions to be answered explicitly on the living will. They are referred to as the “five wishes” and under each one follows a number of lesser questions that can be answered to clarify details and specifics of the person’s desires regarding treatment. Altogether there are 42 questions for people to answer on the Choice and Dignity living will.
Luo Diandian， co-founder of the website， is 62 years old and has been working as a doctor for more than 20 years. In her line of work she has seen many patients with terminal illnesses being treated in the Intensive Care Unit （ICU）. “They lie in bed with all those tubes sticking out of them and they can’t even talk or think properly，” Luo said. “It is really a painful way to live.”
Luo， together with some of her fellow doctors， formed an informal organization that they called the “no tube club，” declaring that they would not accept life-support treatment when they were nearing death.
After seeing an English document called Five Wishes online， Luo considered making a career out of the issue. Five Wishes is a document signed by more than 4 million people in the United States， choosing what treatment they do or don’t want to have with terminal illnesses.
“If people can make decisions themselves while conscious， and they can discuss their wishes with family members and friends， many unnecessary treatment and medical expenses can be reduced，” Luo said.
Unresolved debate
In the 1990s， the debate over living wills heated up in the United States when Terri Schiavo， a resident in Florida， collapsed at home after a cardiac arrest and then suffered brain damage， culminating in a persistent vegetative state.
After years of attempts to return her to a state of consciousness failed， her husband petitioned to have her feeding tube removed in order to let her pass away. However， Terri Schiavo’s parents disagreed with her husband and a legal battle commenced. With more than 10 appeals and numerous monitions， petitions and hearings， the feeding tube was removed in 2001， but reinserted after interventions. The case had spurred intensive debate all over the country and even then U.S. President George W. Bush signed legislation to keep her alive. In the end， the feeding tube was removed permanently in 2005 but the debate continued. “Terri Schiavo spent 15 years in hospital in a vegetative state. If she had made a living will before that， things would have been much simpler，” Luo said.
Chen Zuobing， a doctor at the First Affiliated Hospital of Zhejiang University Medical School in Hangzhou， east China’s Zhejiang Province， argued that Luo’s comment simplifies the matter somewhat.
After being diagnosed with late-stage cancer in April 2011， Chen’s father decided not to stay in hospital for chemotherapy， but to go back to his hometown so he could spend his last days with family and friends.
Chen’s father made the decision himself， after serious consideration. Despite this， Chen received criticism from many people all over the country after his father’s story was featured on TV. “Some people didn’t under-stand why I would agree with my father and prevent him from getting treatment. They said that I had killed my father，” Chen said.“But I have never regretted my decision. My father passed away peacefully and did many things that he wouldn’t have been able to if he stayed hospitalized.”
“In China， if a person’s children don’t try every treatment possible to prolong their parents’ lives， they will be considered unfilial， which is a grave judgment on your character，” said Luo， who revealed that she had to make a similar decision as Chen when her mother-in-law was diagnosed with a terminal illness.
“Seeing my mother-in-law in bed at the ICU with all the tubes sticking out of her， I collapsed emotionally，” Luo said. “Things are different when you are in that situation no matter how level-headed you thought you would be.”
Luo finally decided to cease life-support treatment for her mother-in-law， but she still feared the decision was the wrong one until she saw a note that her mother-in-law had left， saying that at the end of her life， Luo had the right to decide on what medical treatment she should receive.
“Death is a big thing for everybody， and as long as a person is still breathing， other people consider them to be alive，” said Chen Xiaolu， who co-founded the website Choice and Dignity with Luo.
Chen Xiaolu’s father， Chen Yi （1901-72）， former Vice Premier and Foreign Minister， spent his last days in hospital and suffered greatly during his cancer treatment.
“As soon as a person has a terminal illness， the family members’ first reactions are normally to spare no effort and use the most expensive treatment and medicine available to prolong his or her life，” Chen Xiaolu said. “But maybe that is not what the patient wants.” Facing taboos
After setting up the website， Luo frequently goes to hospitals to spread the idea of making a living will and how it can help a person die with dignity， but the feedback is mostly negative.
“Hospitals are considered to be a place that can cure people and bring the dying back to life. Even though many people pass away in hospital， people would prefer to ignore that，” Luo said.
In Luo’s eyes， education on death is a must for the Chinese people as it is the natural end for everybody， but many people refuse to face it rationally. “We are always told how precious life is but seldom taught how to face death. We need to learn to face it with a peaceful frame of mind， and not to fear it，” she noted.
But Luo said she doesn’t expect that life education can be spread universally or accepted quickly. “It is not practical in China. We just want more people to think about it and gradually we can talk about death in a rational and levelheaded manner，” Luo said.
Weng Li， a physician at Peking Union Medical College Hospital in Beijing， revealed that relatives are inclined not to tell patients about their terminal illness， which makes the execution of living wills more complicated.
“Chinese doctors seem to be ‘bound by sensitivity’ to conceal the painful reality from their patients，” Weng said. “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？”
Weng 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 head on. You might be doing the patient a disservice by plunging them into an ocean of fear where they will simply drown，” he said.
“Ask a patient whether he or she 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 role in guiding patients and families， even from behind the scenes，”said Liu Duanqi， a former director at the Oncology Department of the Military General Hospital in Beijing.
Having seen more than 2，000 cancer patients die under his care over the past 40 years， Liu is a strong advocate of the “dying in dignity”campaign. The reluctance， or possibly the inability， of many Chinese doctors to engage patients and their families in a 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.”
Palliative care
For Ma Xiaojing， a Shanghai resident who has been working as a volunteer providing palliative care for quite a few years， there are ways other than just prolonging a patient’s life with medical devices that can make him or her feel better.
“Many people with terminal illnesses are in a lot of pain and are scared by the end of their lives， which also makes the relatives worry，” Ma said. “But the way that their relatives relieve the worry is to send them to hospital and get more medical treatment.”
Ma has been with many ailing people who have less than six months left. “They need patience and the company of their family members. Many seniors want to talk more about their memories and we need to be good listeners and chat with them during this difficult time，” Ma said.
Ma once helped a 60-year-old man with uremia find a friend he lost contact with for more than 30 years and this became the man’s happiest memory in the last days of his life.
“They need emotional care more than medical treatment after they accept the fact that there is only short time left for them，” said Ma， who brings flowers for her patients as well as cards with warm words.
For Ma， who is working as director of Shanghai Hand in Hand Life Care Developing Center， the worry is how to get more investment and volunteers involved in palliative care.
According to Ma， There are about 50，000 patients diagnosed with cancer in Shanghai every year and more than 40，000 pass away in the same time frame. The number of volunteers working for these patients is only about 200 and some of the volunteers cannot work long hours.
The situation is the same in Beijing. Xiangning Palliative Care Center， affiliated with Beijing Cancer Hospital， declared its closure in 2010 after 10 years of operation due to a lack of financial support. Beijing Songtang Palliative Care Center， founded in 1987 as the first one of its kind in China， also struggles with a lack of money and staff， according to President Zhu Lin.
“As China is facing an aging society， the demand for palliative care is growing but the current situation is not optimistic，”Zhu said.
For Zhu， patients choosing to come and stay in the palliative care center normally already know about their disease and have decided to pass away in a relatively peaceful way. However， medical universities normally attach less importance to the education in this field， and as a result it is hard to get enough well-trained staff and volunteers from colleges often cannot work permanently.
Luo says the lack of palliative treatment training in most of China’s medical schools makes it hard to push the concept forward.
“The teachers only try to teach would-be doctors how to save a person’s life and not how to help dying patients leave the world in a comfortable and dignified manner，” said Luo， whose views are echoed by Xi Xiuming， President of Fuxing Hospital affiliated to Capital Medical University in Beijing.
“The hi-tech aspect of medical science today has largely led to the deconstruction of human nature in the post-industrial era， and medicine has deviated from its original intent to provide of humanistic care and created many ethical dilemmas，” Xi said.
Legal powers
“When we talk about death with dignity， people always connect this with euthanasia， which is not the same thing at all，” Luo said. “We encourage people to make their own choice on their medical treatment at the end of their lives and euthanasia is only one of the many choices that a patient can decide on.”
On June 25， with the permission of Beijing Civil Affairs Bureau， the Beijing Living Will Promotion Association was set up after six years of effort from Luo and Chen Xiaolu. Some key hospitals including Peking Union Medical College Hospital and Fuxing Hospital affiliated to Capital Medical University joined the association as part of a pilot program for promoting living wills.
However， this does not give the association or the living wills of patients any legal power. “If relatives of a dying patient refuse to follow his or her living will， we can’t do anything，” Luo said.
Xi said that living wills have raised the profile of such discussions and will become vital as the country sees more patients suffering from incurable diseases that need to consider how to spend last days of their lives. In 2010， Xi started the practice of encouraging dying patients to sign a document allowing doctors to withdraw or withhold medical treatment. More than 10 patients signed the document in 2010.
However， he admitted that besides discussing this topic with a few of his very close friends or patients， his only attempt to promote this concept among a bigger group of cancer patients was met with resistance.
Xi said that there are many complicated situations that have to be considered when promoting living wills.
“When people make their living wills， they are mostly in a relatively healthy condition， but their feelings and decisions might change when they are in a serious condition. What if they want to change their stance but can’t express it？” asked Xi.
Luo， however， said that she still feels confident that the concept will be gradually recognized as more and more people pursue a higher quality of life.
“We are not encouraging everybody to give up efforts in prolonging their life or that of their relatives. We are also not encouraging them to give up all medical treatment. Our priority is to give patients the right to choose，” Luo said. “No matter what their choice is， we should respect that. We call this dignity.”