Both hospice care and palliative care are still unknown to many cancer survivors and their families.

Breast cancer survivor Tanti, who was also the caregiver of her late brother, said hospice care was vital for helping patients and their caregivers, who usually had limited knowledge of how to treat a terminally ill cancer patient.

"I have always thought hospice care was only available abroad, not here."

The 67-year-old Tanti said she had to figure out her own way of taking care of her brother, who was dying of carcinoma nasopharyngeal cancer, in 1989.

"Everything was so confusing. I wanted to help him ease his pain, but I did not know how."

According to www.getpalliativecare.org, which is sponsored by the Center to Advance Palliative Care (CAPC) of the Mount Sinai School of Medicine, hospice care always provides palliative care, which aims to prevent and ease patients' suffering and to offer them and their families the best possible quality of life.

Palliative care may be provided at any time during one's illness, even from the time of diagnosis. And it may be given at the same time as curative treatment, while hospice care focuses on terminally ill patients -- people who no longer seek treatment to cure them and are only expected to live for another six months or less.

The website states that palliative care benefits both patients and their families, and symptom management, communication and support for the family are its main goals.

Despite having been operating in Greater Jakarta for over 12 years, the Indonesian Cancer Foundation's (YKI) hospice home care service for terminally ill cancer patients is still unknown to many people, even doctors. The same with its palliative care service.

Dr. Utari Drijatsiwi, coordinator of YKI's home care service, said even doctors lacked awareness of the importance of palliative care.

Out of the 612 terminally ill cancer patients under hospice care through YKI over past 12 years, only 40 percent came with a doctors' referral letters. The remaining requested the service themselves after learning about it from their relatives.

"It is difficult for doctors to tell patients and their families they need palliative care," said Yuniko Deviana, a cancer survivor.

Telling a patient they need such care means letting them know they're dying, she added.

"In our culture, people still believe death is something that only God knows. It's hard for patients and their families to accept the palliative condition.

"And since not all doctors communicate enough with their patients, some doctors would prefer to say nothing if the patient or family does not ask about the patients' stage of cancer," Yuniko said.

"Doctors refer cancer patients to us simply because the patients are poor, but who are not necessarily in a terminal condition. So, doctors also misunderstand that the goal of hospice care is to help terminally ill patients," Utari said.

According to YKI data, the survival rate among cancer patients in the country is only 40 to 50 percent.

Besides YKI's free hospice home care visits, which they have administered since 1996, cancer hospital Dharmais in West Jakarta has also provided the same service by charging less than Rp 200,000 per visit.

A doctor at the palliative unit of Dharmais hospital, Indriani, told a session of the national cancer seminar in Dharmais hospital recently that palliative care was first established in the country at Dr. Sutomo Hospital in Surabaya, East Java, in 1992. Such care was later introduced to several hospitals in four other cities, namely Cipto Mangunkusumo and Dharmais in Jakarta, Dr. Sardjito Hospital in Yogyakarta, Sanglah Hospital in Bali and Hasanuddin Hospital in Makassar, South Sulawesi. -- JP/Agnes Winarti

Popular

Why Indonesia must write ASEAN’s green rules

Freeport Indonesia pushes back full copper mine restart

Growth without gain: Why Indonesians don't feel the economy