Late referrals to palliative care units in Japan: nationwide follow-up survey and effects of palliative care team involvement after the Cancer Control Act.

Referral to palliative care units tends to be delayed. In Japan, the Cancer Control Act was established in 2006 to improve the quality of life of cancer patients by facilitating greater access to specialized palliative care services. The primary aims of this study were to clarify the family-perceived appropriateness of the timing of referral to palliative care units after the Cancer Control Act, and to determine the effects of the involvement of the palliative care team on the family-perceived referral timing. An additional aim of this study was to clarify the family-perceived usefulness of the palliative care team. A multicenter questionnaire survey was conducted on a sample of 661 bereaved family members of cancer patents who were admitted to palliative care units in Japan. A total of 451 responses were analyzed (response rate: 68%). Half of the bereaved family members regarded the timing of referrals to palliative care units as late or too late: too late (25%, n=114), late (22%, n=97), appropriate (47%, n=212), early (2.4%, n=11), and very early (1.8%, n=8). Among 228 families who reported that patients had commented on the timing of referrals, about half reported that the patients said the timing of referral was late or too late: too late (23%, n=52), late (21%, n=49), appropriate (48%, n=110), early (4.4%, n=10), and very early (3.1%, n=7). The families of patients with a palliative care team (n=191) tended to report less frequently that they believed the referral timing to be late or too late (43% vs. 51%, P=0.073); they also reported significantly less frequently that the patients said that the referral timing was late or too late (36% vs. 52%, P=0.037). The percentages of families who evaluated the palliative care team as useful or very useful were: 93% (symptom control), 90% (emotional support), 92% (family support), and 87% (care coordination). Half of the Japanese bereaved families of patients admitted to palliative care units regarded the timing of referrals as late or too late, and the rates identified in the survey were similar to those recorded before the Cancer Control Act. Involvement of the palliative care team, however, significantly correlated with lower family- and patient-perceived late referrals, and palliative care team activity was generally perceived as useful by the bereaved family members. Further dissemination of palliative care teams could contribute to better access to palliative care units and quality palliative care throughout the country.