Will to live, or to die

By Feng Shu Source:Global Times Published: 2013-1-6 17:56:00

An inside view of the ICU of Zhuji People's Hospital in Zhejiang Province Photo: CFP
An inside view of the ICU of Zhuji People's Hospital in Zhejiang Province Photo: CFP

In the Peking Union Medical College 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.

Li Guiying, 63, a patient in a vegetative state, has her blood pressure checked at a dedicated unit in Harbin, Heilongjiang Province. After a month's treatment there, Li's relatives decided to allow her to pass on. Photo: CFP
Li Guiying, 63, a patient in a vegetative state, has her blood pressure checked at a dedicated unit in Harbin, Heilongjiang Province. After a month's treatment there, Li's relatives decided to allow her to pass on. Photo: CFP

What do we call living?

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.

Global acceptance

New as it is in China, the concept actually has widespread recognition worldwide. In the US, the Natural Death Act, also well known as the Death with Dignity Act and the Living Will Act, has been passed by most states. While the common guidelines for cardiopulmonary resuscitation were drafted in 2005 and 2006, the "do not resuscitate" (DNR), is a very clear will signed by the patients themselves with legal effect.

However, even in the US, the controversy whether to prolong a person's life out of medical duty or to shorten their life in order to prevent pain is still a cause for intense debate, as seen by the prominent Terri Schiavo case. In the case, after remaining in a vegetative state for 13 years following severe brain damage, Terri Schiavo's husband Michael sought to pull the plug based on Terri's prior instructions but the legal ramifications divided the nation.

The 41-year-old Schiavo finally died in 2005 after her feeding tube was withdrawn, thanks to Michael's victory in court. 

Despite not having the same legislation, the living will has been largely recognized in Europe, Singapore and Chinese Taiwan, where the government always takes the lead in implementing it by encouraging citizens to fill in the standard living will document, passing regulations to guarantee it will be obeyed if signed. This is also matched by advanced training to provide top-notch palliative care.

But on the Chinese mainland, Luo admits the battle is much more complicated than she had imagined. Though backed by quite a few medical experts, Luo has never succeeded in introducing the living will document in hospitals, after being turned away by staff as bringing bad luck. During Spring Festival, she gave her book Who Is Responsible For My Death to friends but they viewed it as inappropriate to talk about death during the festival atmosphere.

Unknown taboo

A survey by the Peking Union Medical College Hospital in 2010 showed only around 30 percent of people knew of the living will concept while 60 percent of those who would require every effort be made to save their dying relatives would actually choose the DNR option for themselves.

While Liu Xiaohong says it is a bit "embarrassing" that only 37 percent of medical staff knew about living wills, 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 how to save a person's life, but not how to help dying patients leave the world in a comfortable way with dignity," said Luo, whose views are echoed by Xi Xiuming, the president of Fu Xing Hospital affiliated to Capital Medical University.

"The high-tech aspect of medical science today has largely led to the deconstruction of human nature in the post-industrial era, and has deviated from its original intent to provide of humanistic care and created many ethical dilemmas," Xi insists. 

Doctors, even in China, have long sought to persuade the relatives of suffering patients to give up treatment to allow them to die in peace. Xi says the living will has 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 their last chapter of life.

In 2010, Xi started the practice of encouraging dying patients to sign a decision allowing doctors to withdraw or withhold medical treatment. While more than 10 patients signed the letter in 2010, around 30 signed last year.

But not all are as bold as Xi in making definite moves. As the former director of the oncology department of the Military General Hospital of Beijing who has seen more than 2,000 cancer patients due under his care over the past 40 years, Liu Duanqi is a strong advocator of "death in dignity."

However, he admits 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 finally went bust.

"I planned to give a lecture to introduce terminal care and death education, but the organizer told me I had to change the topic as the patients said the subject was frightening," said Liu. "We just can't talk about death, as it makes the families feel we are not giving our all out to rescue their loved ones, not to say worsens the very tense relations between doctors and patients today."

A similar frustration is felt by Liu Xiaohong at Beijing Union Hospital, especially when the problem comes from the relatives of the patients.

"It should be a topic raised around the table when people are still healthy…it's very hard to persuade them to give up the lives of their beloved ones in an environment like the ICU, when the priority of doctors should be racing against time to save lives," Liu Xiaohong said.

Though the living will document drafted by Luo and her team cannot be guaranteed to have an ironclad legal value, Luo says she still feels confident the concept will be gradually recognized when more and more people pursue a higher quality of life. She is now also researching her second book on this topic, seeking to collect a hundred stories from doctors about the final chapter stories they have witnessed.

"There is no ethical discussion at play, nor a guidance of mainstream values, I just want to show different stories about death, and then encourage people to start talking about it and preparing for it," said Luo.

Posted in: In-Depth

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