The Most Important Lesson for Physicians:
When Should Patients Be Allowed to Die?
Now that technology can prolong life beyond its natural limits, the biggest question physicians face is not how to keep terminally ill patients alive, but how to help them die a dignified death.
When Should Patients Be Allowed to Die?By Rebecca Lin
From CommonWealth Magazine (vol. 435 )
Do physicians agonize more over death than ordinary people?
The lights at National Taiwan University Hospital in downtown Taipei are still shining brightly at 8 p.m. Hastily gulping down a sandwich for dinner, Ko Wen-je, head of surgical intensive care, laments that, thanks to the technical advances of medicine, doctors today do not have to worry about keeping patients alive, but rather how to let them die a dignified death.
Someone with a bad heart can receive a circulatory support device. A person with lung failure can be hooked up to a respirator. With liver insufficiency, one can receive blood plasma exchanges or infusions with fresh frozen plasma. Blood transfusions can alleviate bone marrow problems, and antibiotics can treat infections and immune deficiencies.
Even terminally ill patients seem to evade the inevitable, their lives prolonged far beyond what once was their natural limit. Indeed, this state of affairs raises some very basic questions: "What is death? When does a person truly count as being alive?"
An 82-year-old man with a weak heart spent NT$1.6 million on an artificial heart. However, since the device came with a large control console, the octogenarian found it difficult to move around with it. So he asked his doctor whether there were any other options. The doctor told the old man that he could switch to a smaller, handier device for another NT$3.5 million. The man was not willing to spend so much money and stuck with his original wieldy device. However, since the artificial heart severely restricted his mobility, the man got so depressed that he became bedridden. Seven months later, he died from a stroke. In this case the patient had weighed his options and made a decision.
Is Technology Keeping Us from Dying a Good Death?
Since the invention of the ECMO (extracorporeal membrane oxygenation) machine, used to continue the supply of blood and oxygen for patients whose heart and lungs cannot normally function on their own, doctors are facing an even bigger conundrum when it comes to making the difficult choice between sustaining life or allowing death to take its course.
Thanks to advances in medical science and technology, life can even be sustained without a beating heart if a patient is hooked up to an ECMO machine. At National Taiwan University Hospital, the current record for life-sustaining care with an ECMO machine is 117 days.
The problem is that only a few patients who receive life-sustaining treatment have a chance of ever leaving the hospital. The vast majority of patients who are hooked up to an ECMO machine are kept alive only to witness their body functions gradually deteriorate, as the skin on their legs progressively blackens. Fully conscious, they see life gradually slip away, suffering a prolonged death.
Ko recalls the case of a well-known entrepreneur's wife who was kept on life support until her entire body had turned black and swollen beyond recognition.
"High-tech is keeping people from dying a good death," Ko says with a deep sigh.
Terminally ill patients in intensive care usually gain three kilos in body weight before their death, because the continuous intake of medication and use of tubes to connect numerous life-sustaining instruments and devices causes severe swelling. Patients are subjected to such medical intervention although treatment is futile and only prolongs the dying process.
Physicians are not willing to face death and are reluctant to confront patients' families with the truth. They can only exploit to the fullest the "weapons" of modern high-tech medical care.
But the issues of death and dying cannot be swept aside, especially in the intensive care unit.
"Our dilemma today is not how to sustain the life of patients, but how to let them conclude their lives peacefully, how to reduce their suffering in the process of dying," Ko muses.
He points out that the Chinese word for "physician" literally means "one who treats the living," not "one who treats the dying."
"Our teachers tell us that saving lives is our foremost mission, but no one teaches us how to deal with dying people. Who is the one not able to accept the reality of death – the patients' families or the doctors? The answer is the doctors," Ko says frankly as he points to a series of shocking slides on his computer monitor.
Ko says the most important question he has been asking himself in recent years is whether to treat the living or to treat the dying? When should life support be withdrawn? When should the ECMO machine be switched off to let patients die?
Lin Chih-lung, attending physician at the Department of Neurosurgery at Kaohsiung Medical University Hospital and also a professor at the university, recalls with sadness how his teacher developed heart cancer in his early fifties. As a physician he clearly knew that his chances for survival after surgery were slim. Consequently, he took care to clearly state that he did not want any life sustaining measures should the procedure fail, but should be allowed to die a dignified death.
But when the situation arose, the treating physician, who was the patient's teacher, insisted on bringing him back and inserting tubes for life support, arguing with a grief stricken voice: "How could I let my own student die?" Having served as physician all his life, he was not able to let his student die under his care.
All the physicians in the hospital room were silent. Lin was so shaken by the experience that he later on told his students: "If one day it should be me, please don't save me."
"Unless a patient has clearly stated his wishes, all we can do is put ourselves in their place, not let the patient's family have any regrets, and help them to calmly face the dying process," notes Lin. Lin feels deep inside that physicians can at best borrow time from God, but that they cannot make the choice between life and death.
What Taiwan's medical schools and colleges need most at the moment is courses on death and dying. Ko feels that there is a pressing need, in particular since he found out that aside from National Taiwan University, where medical students are required to obtain two credits in "death studies," hardly any medical school is educating its students on how to deal with death and assist the dying and their families.
"It's just laughable – a profession that faces death every day doesn't include death studies in its training and education," Ko says in a mocking tone, unable to conceal his frustration.
Physicians are people who cure, but one day they themselves will become patients or be part of a patient's family. In recent years Taiwan's medical profession has repeatedly come under attack for an apparent lack of professional ethics. Prominent examples include panicked physicians neglecting their duties during the SARS outbreak in 2002-2003, and a case in 2005 in which a little girl, beaten unconscious by her drunken father, died because doctors at a Taipei hospital refused treatment, sending her to a hospital in central Taiwan instead.
The medical community has responded to these incidents by asking what has gone wrong with medical education in Taiwan. And there are efforts under way to reform medical training.
"If we don't do it today, we will regret it tomorrow," warns Lin.
Learn To Be a Person First
Over the past two years, Taiwan has begun to introduce the Taiwan Medical Accreditation Council (TMAC), bringing the island's medical assessment criteria in line with international standards.
The focus of the medical education reform movement is first learning to be a decent human being, and then learning to be a doctor.
At Kaohsiung Medical University the curriculum has been changed to provide opportunities for personal development. In the past medical students would start with specialized courses in their freshmen year, but now they have two years of preparatory studies including a broad emphasis on medical humanities.
In the auditorium at Kaohsiung Medical University, today's class is on the subject of life.
The auditorium is packed with freshman medical students. Not a single seat is vacant. These students are looking toward a promising future, their eyes shining with hope. If everything goes according to plan, they will all become doctors.
The "teacher" on the podium is Tseng Ying-chi, a man who suffers from Duchenne muscular dystrophy, a genetic disorder that leads to loss of movement and eventual paralysis. Tseng relies on an electric wheelchair to get around and knows that his life clock is ticking rapidly.
Knowing that his remaining time is limited, Tseng has prepared for his own death. "After I'm gone, I hope to donate my body to science, to give something back to society. This is also a way for me to repay my father's kindness and let everyone see what my father has done for me," Tseng tells the students.
The clock on the wall seems to tick even faster. Tseng is speaking with great physical effort, as he struggles to breathe in between every word he utters. His frail body, bent from the scoliosis that comes with the disease, weighs only 24 kilograms. The three hours of massage his father gives him every day have helped him live seven years beyond the 20 that are the average life expectancy for Duchenne muscular dystrophy sufferers. But he is also aware that his body is on a downward course, getting frailer day by day.
Tseng, who finished his university education and founded the Taiwan Muscular Dystrophy Association with his parents, decided to donate his body to Kaohsiung Medical University for research. By enabling doctors to better understand this incurable disease, he hopes that the lives of other people with muscular dystrophy can be prolonged.
Today's lecture is probably the most important lesson in the lives of these "doctors-to-be." Jong Yuh-Jyh, vice president of Kaohsiung Medical University, notes quite emotionally that doctors are not only asked to treat patients, but also need to show empathy. Jong believes that any student who sees medical science as his or her calling should comprehend and accept this.
As Tseng bares his life in front of these future physicians, what do the students feel? Med school student Kang Yen-bo was moved to tears by Tseng's story, as his red puffy eyes reveal. As he wipes his nose he professes that once he is a doctor he will put himself in the place of his patients and be empathetic and compassionate toward their feelings. Kang admits that he had never given empathy a thought before attending Tseng's class.
"I'm definitely determined to become a good doctor," says Chen Li-han, another student who was visibly touched by Tseng's story. He eagerly promises, "Seven years from now I'll still keep the same attitude." This is exactly what Lin hopes to see. As a teacher, he constantly reminds his students not to forget why they chose to study medicine in the first place.
The second class today is about respect for human dignity.
Before students take anatomy courses in their third and fourth year, they are required to spend time and effort on visiting the families of people who donated their bodies to science. The aim is to have students understand that each body donor also was a father or mother or child in his lifetime. Before a cadaver is dissected, a special ceremony is held.
When students have contemplated death and dying they will not panic when it comes to taking anatomy classes and will go into the lab with a different attitude.
Chen Shih-chieh, head of the Department of Anatomy at Kaohsiung Medical University, notes that the key to making a good doctor is human compassion. He hopes that the university's special classes in medical humanities will plant in the students' hearts and minds seeds of compassion that will grow as they advance in their field.
"Strive to be a good doctor, not a famous doctor," is what the late Dr. Huo-yao Wei (1907-1995), a former president of Kaohsiung Medical University, used to tell his students. Wei's motto still resonates within the corridors of Taiwan's medical schools. Let's hope the students take it to heart.
Translated from the Chinese by Susanne Ganz
Chinese Version: 科技讓人不得好死？急診室醫生的告白