End-of-life care intended to make the terminally ill more comfortable often begins too late to be of much benefit to patients and their families, a survey of Japanese families suggests.

Researchers found that half of families who had lost someone to cancer thought that doctors had referred their relatives for palliative care too late. Palliative care attempts to relieve dying patients’ physical symptoms and address their emotional needs, rather than strive for a cure.

Though such care has become increasingly available in Japan, the U.S. and elsewhere, studies have consistently shown that many patients are not referred for palliative services until very late in their illness.

In the U.S., it’s been estimated that about one-third of patients in hospice care die within a week of referral to the programs.

For the new study, researchers surveyed 318 families of cancer patients who had been referred for palliative care. Half described the referrals as coming “late” or “very late,” while less than 5 percent thought their family member had been referred too soon, according to findings published online by the Journal of Clinical Oncology.

What’s more, the study authors found, family members who felt palliative care came too late frequently blamed their doctors’ resistance to discussing end-of-life care.

The findings suggest that both cancer specialists and families need better education about palliative services, according to the researchers, led by Dr. Tatsuya Morita of Seirei Mikatabara Hospital in Shizuoka.

There is a general lack of knowledge about palliative care in many populations, Morita told Reuters Health. And when it comes to physicians, many may find it hard to bring up end-of-life care since they are trained to save lives, according to the researcher.

However, families in this study largely thought that more discussion about palliative care would have been helpful to them and their terminally ill relatives.

The researchers found that families were more likely to believe they were referred for palliative care late if they felt they hadn’t had enough up-front discussion of end-of-life care with their doctors. Of the 102 families who felt this way, more than half said the lack of discussion stemmed from doctors’ “unwillingness” to talk about the issue.

In addition, many families mistakenly believed, before being referred for palliative care, that it “provides no medical treatments” or that it “shortens the patient’s life.” Those opinions shifted after their relatives began the programs.

A large majority of family members agreed that it would be “useful” or “very useful” for cancer specialists to have better knowledge of palliative care and to take the lead in bringing up the issue with patients and families.

The study focused on patients treated at hospital-based palliative care units, which form the core of end-of-life care in Japan. Hospice programs offering home-based care, which are common in the U.S., have been slow to grow in Japan.

Still, both countries have shown a similar trend in that palliative care services are far more common now than 10 years ago, but late referral remains a major obstacle, according to an editorial published with the report.

The current findings have “great significance” for other countries, according to Betty R. Ferrell of the City of Hope National Medical Center in Duarte, California. “The message is clear from family members,” she writes, “that patients should be referred to palliative care programs earlier in the course of disease.”

SOURCE: Journal of Clinical Oncology, online Feb. 22, 2005.