Death comes to us every day.
We casually read about it or see it
In the newspaper and on the television.
Individual death,
Group death,
Premeditated death,
Accidental death,
All hurtle directly into our daily lives,
Making us sigh with sorrow.
Sometimes
We simply turn our back on it and deny our fear.
However,
Death is not independent from any life.
Two years ago,
Tzu Chi Hospital set up a palliative care unit.
Terminal cancer patients are always the stars,
Their family members and the medical staff are the supporting actors and actresses.
Time
Compresses every story that is acted out.
The scenes of dying,
The lingering of worldly love,
The chaotic, prolonged grief…
Living
Takes courage to survive.
Facing death
Takes courage to move forward.
How we treat death
Helps us decide how to live.
We hope
That understanding palliative care
Will let death become more than just a necessary part of life.
It can also be a lesson that everyone can practice at any time.

Facing Death Serenely

By Yang Chien-jung
Translated by Lin Sen-shou

Only fifteen percent of medical professionals in Taiwan really know anything about palliative care, and less than ten percent of cancer patients can receive such assistance. Insufficient facilities and neglect of care for the terminally ill indicate that most people lack any knowledge or preparation for death.

Reflections of a Family Member

Six weeks after his father was diagnosed with cancer, Chen Yao-wen discovered what "care for the dying" meant from a book titled The Tibetan Book of Living and Dying by Sogyal Rinpoche.

The fact that his father was dying scared him. He watched his father suffer in a Taipei hospital for fifty days without a single day's good sleep. [In Taiwan, hospital staff primarily provide only medical care. Family members stay with the sick, even twenty-four hours a day, taking care of their daily needs and even cooking meals for them in kitchens provided on each floor.] Exhausted after taking care of his father for such a long time, he became like a startled rabbit: any tiny thing that happened to his father might mean the permanent separation between the two of them. "No one can share with you that kind of suppressed emotion, especially the fear of death." The deaths of his parents still hover over his mind like a dark cloud.

"My mom died in an ICU ward. When she died, her bedsheet was stained with blood. She had gone through so many crises, been pierced with so many tubes and received so many electric shocks. The place was truly a living hell." The memory of his mother's death was still vivid, and now the shadow of death was hanging over him and his father.

Although the medical staff informed only Chen, not his father, of the illness, the old man had lived long enough to know what his situation was. What with the pain such as he had never experienced before, the sad looks on the faces of his family, and the fact that he was suddenly allowed to eat anything he wanted, he could guess that he had contracted some serious illness.

The pain increased, and so did the dosages of painkillers. The medical staff and members of the family were afraid that the old man might become addicted, and so they occasionally gave him nutrition injections instead. This did not help. The old man would sometimes pass out from the pain, or his rage would explode in all directions. These unhappy memories would never be erased from the minds of his family members.

The old man suffered more and more, yet he received less and less care from the hospital staff. Twice a dayt eight in the morning and five in the afternoonhey came in like whirlwinds, stayed less than one minute, and then dashed back out. Chen was horrified at this behavior, since he simply wanted his father to be comfortable during the final stage of his life. "But during the whole fifty days that we were in the hospital, not one person ever told us that there was another type of medical treatment for cancer patients that we could try."

His father wanted to find a ward with a little kitchen, so that he could sometimes make his favorite food. To satisfy his father's wish, Chen searched all over Taiwan. When he discovered that there was such a thing as palliative care, he felt upset and blamed himself, because all he had been doing for his father was very limited and he had made many mistakes. If he had found out about palliative care sooner, he would not have wasted so much time.

When Chen read about care for the dying in The Tibetan Book of Living and Dying, he learned that cancer patients were not just waiting for death to arrive. If patients and their families could receive proper counseling, they would have more time to cope with the last moments in life.

After Chen had visited several palliative care facilities and collected a great deal of information on the subject, he became deeply aware that most people knew nothing about death and dying. When they finally faced death, it was usually too late and they did not even know where and how to seek support. Chen felt that if it had not been for his father, he would have been like most other people, thinking that nothing would ever change and ignoring the fact that nothing in this world lasts forever.

While collecting information, Chen discovered that only fifteen percent of medical professionals in Taiwan really know anything about palliative care. According to the Department of Health, 30,000 people died from cancer last year in Taiwan, but so far only thirteen hospitals have palliative care wards and twenty-six hospitals have palliative home-care services. Only two to three thousand cancer patients can receive careess than ten percent of all cancer patients. This means that at least 27,000 cancer patients and their families have to endure torment without the help of any palliative care.

Chen was impressed with the Tzu Chi Hospital Heart Lotus Ward and its medical staff, so he decided to transfer his father there. However, the attending physician at the hospital where his father was staying tried to dissuade him. "Why do you want to transfer your father there? We can do the same things that that palliative care ward does, or we can even do them better." Chen asked the doctor what palliative care was, and the physician was unable to respond. Even that physician did not believe there was such a place that could stop a patient's pain while allowing him to keep a clear head.

Chen transferred his father to the Heart Lotus Ward. That same afternoon, his father fell asleep and started snoring. This was rather a rare blessing for the old man, who had not slept well for the past fifty days.

In the other hospital, when Chen told the medical staff that his father's feet were painfully swollen, no one did anything about it. But on the first day that his father came to the Tzu Chi Hospital, a nurse massaged his feet and gave him a nice bath in the ultrasonic bathing machine. He immediately fell asleep.

Because of this painstaking care and support of the medical staff, Chen was relieved of his pressure and fatigue. "Go get some sleep in the family room," a staff member urged him. "We can put more people on the job, and we will wake you if anything comes up."

Giving the deceased blessings and prayers is far better than standing on the side and simply feeling sad. Facing death is not easy. Chen felt it wonderful that the volunteers in the Heart Lotus Ward were able to provide him with a different viewpoint toward death. He tried to talk frankly about the illness with his father, and he even discussed the concept of body donation with him. On the fifth day, the old man became very calm, and on the seventh day he died peacefully.

During this short stay, Chen saw the care provided by the Heart Lotus Ward to terminally ill patients, and he especially noticed the supporting role played by the volunteers, such as wheeling patients outside for some sun. The volunteers would fulfill even the tiniest requests of patients' families, anytime and anyplace. The transfer to Hualien had been done hurriedly, so Chen had not prepared any funeral clothing for his father. However, the volunteers even took care of that.

"If even the medical personnel themselves do not have the proper knowledge about palliative care, they certainly can't help patients or their families," Chen observed. Because of his father, Chen would like to help promote the right concepts about palliative care, so that no one will think that palliative care is nothing more than passively waiting for death. Palliative care should actively encourage patients to face the last days of life calmly. At the same time, it should also teach family members to make good use of every moment of their lives, so that they won't panic when that last moment arrives.

Education on Death

The Tzu Chi Hospital Heart Lotus Ward has now entered its third year. Through periodic lectures, professional training, volunteer training and publications, the hospital hopes to broadcast the message of palliative care.

"If a physician has two patients, one vomiting blood and the other suffering from cancer, the doctor will tend to the patient who is vomiting blood," observed Dr. Hsu Li-an of the Heart Lotus Ward. "Cancer patients are also living beings, but simply because they can't recover from treatment right away, they are often ignored by the medical system." Since the medical system does not stress palliative care, it may explain why Chen's father was given less care by the hospital staff.

Physicians tend to feel that their success comes from saving patients' lives and nursing them back to health, so when they face an illness like cancer that even modern technology cannot cure, they do not know what to do. Furthermore, palliative care is not included as an area of specialized research in Taiwan. It is only considered as another kind of medical treatment. In other countries, only the United Kingdom has listed palliative care as a part of professional research. This may explain why few physicians know what palliative care is and do not see it as an important specialization. That is also why many physicians cannot answer questions about it.

"If we regard curing diseases and saving lives as a doctor's achievement, palliative care is not an accomplishment because everyone here [at the Heart Lotus Ward] must face death," said Dr. Hsu. "No matter how good I am, I am not God and I can't bring these dying cancer patients back to life. All I can do is help to make their final days easier and actively accompany them to the end."

Then, why is it necessary to provide care to these dying patients? "The main point is that cancer patients suffer more pain than others, but they have been abandoned by the medical system. There is a need to actively prepare them for death, but the medical system provides rather limited care for them. Our final hope is better education and promotion of palliative care through the mass media to raise public awareness so that cancer patients can receive the best care, even at home."

Dr. Hsu further said, "I treat the death of each patient as if it were my own." He feels that the patients teach him a lot about death and dying. Most people know nothing about palliative care, and as long as they don't run into it themselves, the subject doesn't attract their attention. Our society should be serious about a matter like this, because palliative care does not stop with terminally ill patients and their family memberst also emphasizes education on death.