Referrals to palliative care come too late to improve quality of life for cancer patients

Referrals to palliative care often come too late to improve quality of life for patients with cancer, a new study has found. A survey of family members of people who have died of cancer in Japan found that nearly half of respondents believed that referrals to palliative care were given too late in the course of the illness. The study, which will be published online February 22 in the Journal of Clinical Oncology (JCO), is the first to investigate perceptions about referrals to end-of-life care among family members of cancer patients.

“Earlier referrals to palliative care are essential to alleviate suffering and improve treatment outcomes and quality of life for people with cancer,” said Tatsuya Morita, MD, Department of Palliative and Supportive Care, Palliative Care Team and Seirei Hospice in Shizuoka, Japan, and lead author of the study. “Patients and their families should feel comfortable discussing end of life care with their physicians and each other so that palliative care services can be given at the most appropriate moment for the patient.”

Palliative care treats the physical, spiritual, psychological, and social needs of a person with cancer, both during cancer treatment and at the end of life.

Researchers in Japan gave detailed questionnaires to 318 family members of cancer patients who had received end-of-life palliative care services. The survey asked respondents about their perception of the timing of referral to care, as well as their perceptions of the quality of palliative care.

The greatest proportion of respondents believed that palliative care referrals were given late (30%) or very late (19%). Forty-eight percent of families thought that referral timing was appropriate, while only 3.8% said that it was early or very early.

A number of factors determined the timing of palliative care referrals. Families who reported late or very late referrals were significantly less likely to report having discussions with physicians about end of life care (55%), compared to those who thought referral time was appropriate (79%). Of the families who did not have such conversations, factors included family unwillingness (14%), patient unwillingness (18%), and physician unwillingness (57%).

Families who reported late or very late referrals were two times more likely to believe before admission that palliative care shortens patient lives. They were also more likely to report feeling unprepared for changes in the patient’s condition as he or she neared the end of life.

Researchers found, however, that families’ perceptions of palliative care changed significantly once patients were admitted to palliative care units. Among 257 families who had low expectations before admission, 101 (39%) reported that the care was much better than expected, 76 families (30%) said it was better, while only 12 (4.7%) reported that care was worse.

An accompanying editorial by Betty Ferrell, PHD, FAAN, research scientist, City of Hope National Medical Center, notes that this study has great significance for people living with cancer in all countries.

“There is international recognition about the need to ease what is an incredibly difficult decision for patients and families about palliative care and increase earlier referrals to such programs,” Dr. Ferrell said. “This study supports closer collaboration between oncologists and palliative care specialists, rather than simply a swift transfer from one provider to the other as the patient’s condition declines.”