Cancer Advances: Referrals to Palliative Care Often Come Too Late, Survey of Family Members Suggests

Posted online on February 22, 2005 on www.jco.org

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A new study suggests that referrals to palliative care often come too late to improve quality of life for patients with cancer. 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.

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.

Researchers in Japan gave detailed questionnaires to 318 family members of people with cancer 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 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 with 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.

What Does This Mean for Patients?

Ensuring that people with cancer—at any stage of their disease—receive appropriate palliative care can alleviate suffering and improve treatment outcomes and quality of life.

However, talking about palliative care can be difficult for patients and their families, and discussing end-of-life care and decisions about continuing or ending treatment can be particularly challenging.

Open communication between patients, family members, and their physicians can ensure that palliative care services are given at the most appropriate time for the patient and can help patients and their loved ones cope with the stress of disease.

Additional Resources

Please see the following links on PLWC.org for more information about palliative care:

Palliative care.