On August 8, 1996, Tzu Chi General Hospital set up Eastern Taiwan's first palliative care ward for terminally ill patients. In Taiwan, Tzu Chi Hospital is the first Buddhist hospital, and the fifth hospital of any kind, to have a palliative care ward. Master Cheng Yen named the ward "Hsin Lien," which literally means "lotus flower of the heart." The name symbolizes the conviction that patients can face any disease with dignity, just as lotus flowers rise out of the muck and mire of the swamp.

From Home to Palliative Care

Seven years ago, the Family Medicine Department at Tzu Chi Hospital introduced the idea of palliative care in order to better serve cancer patients. The concept did not come into the spotlight until the hospital formed a palliative care team, which began to provide home care in December 1995. The home care team consisted of anyone the patients needed, such as doctors, nurses, social workers, psychologists, physical therapists, volunteers, religious persons, etc. They visited patients in their homes at least once a week to provide the same medical treatment that they would get in the hospital.

Since most of these patients lived in villages scattered throughout Hualien County, which stretches more than 100 kilometers and is mostly mountainous, Tzu Chi Hospital had a hard time undertaking home care. In order to make home palliative care work more efficient, the hospital only accepted patients who lived within a half-hour drive. Those who lived outside of this area were referred to local hospitals or clinics. However, Tzu Chi Hospital always found a way to care for patients, regardless of their situation.

The palliative care team primarily focused its work on controlling patients' symptoms and on alleviating their pain. The psychological condition of the whole family was also a major concern, since families dealing with cancer often faced emotional distress, financial shortages and physical exhaustion.

At its tenth anniversary in 1996, Tzu Chi Hospital decided to begin palliative care services. These services aim to respect life and focus their care on four areas, including care for the whole person, the whole family, the whole course of treatment and the whole team. "Even though the patients are terminally ill, they deserve whole care as advanced as those patients in the intensive care unit," said anesthesiologist Dr. Lin Pi-sheng.

"The home-like palliative care ward is very comfortable, restful and tranquil," applauded Yasuko Ishigaki, vice director of Higashi Sapporo Hospital in Japan, as she took her first glimpse of the Hsin Lien Ward.

Home-Like Warmth

The ward is decorated with a sense of home, and the atmosphere of home-like warmth spreads to every corner. In the kitchen, for example, a refrigerator, a microwave oven and other utensils are provided for patients to cook and enjoy their favorite homemade meals. The sizable recreation lounge has elegant wooden furniture, an aquarium and a TV set. In the corner, there is a small platform used for performances by patients or visitors. The ward also has an ultrasonic bath machine, which helps patients clean their bodies, relaxing as they luxuriate in hot, bubbling water. Outside the ward, there is a roof garden, allowing the patients to draw close to nature, stroll leisurely on stone paths and be caressed by warm breezes. In the bedrooms, colorful quilts and sofas provide coziness. The ward also holds religious rituals for patients of various religions to help soothe their worries.

Above all, what creates the ward's pleasant atmosphere are the amiable smiles on the faces of the medical personnel and volunteers. Their pleasant greetings and high spirits ease a patient's anxiety and depression.

By the end of 1996, the Hsin Lien Ward had 11 occupied beds, with a maximum capacity of 23 beds. According to Dr. Hsu Lee-an, the chief resident of the ward, approximately 50 cancer patients in Tzu Chi Hospital have chosen palliative care without active treatment. Dr. Hsu said family members usually accepted and approved of this new concept, and they appreciated that the team offered the best care to help the patient die without pain or additional suffering.

A patient has the right to decide whether he or she would like to receive palliative care; however, not everyone is qualified. In order to be eligible for palliative care, the patient must be diagnosed as being in the final stage of the disease and specialists must verify that no medical treatment can be used. Most importantly, the patient and his or her family must accept and approve the concept of palliative care.

Dr. Hsu emphasized that palliative care is intended to care for patients, not to cure disease. Since the patients' diseases have not responded to any medical treatment, the team focuses on physical and spiritual care without giving further medical treatment, such as endotracheal intubation, electrical shock or CPR. In other words, all the care has to be the most natural and the least harmful.

Respect the Patient's Decision

In the ward, the patient's decision always comes first. Any treatment by the palliative care team must be approved by the patient. In addition, once his condition has stabilized, a patient may be discharged if he wishes and receive care at home. There will always be a bed waiting should his health worsen and he needs to return.

The best quality care is not only based on the most up-to-date equipment, but also on the enthusiasm of the team members. "It's not luck, but our hearts and efforts that make our palliative care successful," said Chiang Mei-hua, supervisor of the nursing department.

Truly, the team members' support and devotion to palliative care is the driving force that keeps the ward growing. "As long as the team stands by, I am not alone," Dr. Hsu said.

Asked what has made the Hsin Lien Ward unique, Dr. Hsu replied without a second thought, "The warmhearted volunteers!" According to statistical data, volunteers delivered almost half of the services in home care, compared to only 5.1% of services provided by medical professionals. Volunteers helped provide care that the social workers could not, and they also lowered medical expenditures.

Tzu Chi Hospital has selected 30-plus local volunteers to be trained to serve the patients in the ward. They rotate in three shifts as nurses do, but each shift is only three hours long. To care for the terminally ill requires much patience and knowledge beyond basic nursing skills. The volunteers received advanced training and are given a one-hour training class each week on subjects related to palliative care.

Just Listen

Volunteers provide many services to the patients and their families. But the best service may be just to listen. Like sponges, they soak up the patients' feelings of happiness and sadness. Like bridges, they link the patients to medical personnel and their families.

"Give a patient what he needs instead of what you want to give him," said Sister Chang Mei-li, who has four years' experience in caring for cancer patients [see her story, "A Pretty Woman," in this issue]. "In the depths of their hearts, they long to be loved, cared for and understood. Sometimes all you have to do is reach out your hands to hold theirs and give them your shoulders to cling to."

In recent years, many counseling experts and scholars have made great efforts to advocate the right for people to live with dignity. This new idea is widely agreed upon by medical personnel. The Mackay Memorial Hospital established the first palliative care ward in Taiwan in 1987, followed by four other hospitals. Now there are a total of 34 palliative care units in Taiwan.

However, these numbers still lag far behind the demand for palliative care. According to statistics, one out of four hospital patients in Taiwan has cancer and about 25,000 people die from this disease each year. Furthermore, the aging of the population and advances in medical technology means that the number of people suffering from chronic diseases is increasing rapidly. Establishing palliative care and home care is critical in providing adequate care for terminally ill patients and the growing elderly population.

Let Them Die Naturally

Although the palliative care system is gradually gaining recognition and public acceptance, the decision not to prolong life baffles some physicians. "Not to prolong a patient's life does not mean to shorten or end his life," Dr. Hsu explained. "Unlike euthanasia, the goal of which is to help patients to end their lives with medicine, palliative care intends to alleviate their pain, to provide the best quality of life with dignity, and to help them die naturally."

The legal boundary between palliative care and euthanasia remains obscure, but palliative care has apparently won support from the Central Insurance Bureau, which includes it under the national health insurance coverage. Based on its regulations, terminally ill patients are treated as patients with severe diseases. Anything provided in the palliative care ward will be covered by insurance except for the extra NT$600 (US$23) or NT$1000 (US$40) for single or double rooms. In addition, the bureau decided in July 1996 that home care for terminally ill patients may also be included within the scope of universal health insurance.

This policy benefits both patients and hospitals. It guarantees that patients can receive continuous care at home without worrying about the expense. As far as hospitals are concerned, the policy means that more sickbeds can be used by other patients who are at an acute stage of illness.

Respect Life