Late Referrals to Palliative Care

Abstract

The report by Morita et al regarding late referrals to specialized palliative care services in Japan provides a unique perspective on this topic, with great significance to other countries. The primary end point of the study was the bereaved family members’ perceptions of the appropriateness of the timing of referrals of patients to palliative care units. Previous literature has primarily measured the effectiveness of palliative care referrals from the perspective of the primary care physician. It is of value to address this question from the perspective of family caregivers, as those truly most impacted by these referral patterns. Previous literature has documented late referrals to hospice or palliative care services as being attributable to physicians wanting to avoid referring patients to palliative care “too early.” Oncology settings echo the beliefs of “it’s not time” or “we’re not ready for that yet.” This reluctance is commonly expressed by patients, family caregivers, and primary care providers in cancer care and other serious illnesses. The families in this study who perceived referrals as having come early or very early were so few that they were excluded from the final analysis. The data reported by these authors is not dissimilar to the situation in the United States, where the average length of stay in hospice is 50 days, and median stay is only 21 days. The National Hospice and Palliative Care Organization reported in 2002 that 34.7% of those served by hospice died within 7 days or less of referral. One can well imagine how compromised palliative care can be when instituted only days before death. This report from Japan speaks to the critical role of communication in advancing palliative care. The regression analysis reported by the authors revealed independent determinants of family perception of late referrals. Interestingly, these determinants included family belief before admission that palliative care shortens the patient’s life, insufficient advance discussion about end-of-life care, and families’ perception of insufficient preparation for the changes in the patient’s condition. Programs in the United States such as the End of Life Physician Education Curriculum (EPEC) and the End of Life Nursing Education Consortium (ELNEC) have emphasized content of communication as the essential foundation of quality across dimensions of care including pain and symptom management, addressing ethical issues, cultural considerations, and advanced care planning. The National Hospice and Palliative Care Organization in the United States has frequently described hospice as “the difficult choice”—the choice that no one wants to make. For decades, our society has demonstrated that discussions of death and dying, hospice, and palliative care are topics to be avoided at all costs. It is again an interesting dichotomy that death, the topic we most avoid, is also the one that is inevitable for us all. Yet, the wisdom shared by the family caregivers in this study described palliative care as exceeding their expectations. The authors are to be commended for asking these expert family caregivers for advice, as illustrated in the recommendations provided in their Table 5. These 182 family caregivers reported that earlier cooperation of palliative care and oncology physicians would be helpful. The recommendations offered by these families support close 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. The recommendations also included having oncologists with improved knowledge of palliative care, allowing patients to receive medical treatments within the palliative care unit, oncologists’ continued participation in patient care, and the possibility of a “trial admission” to the palliative care unit. Each of these recommendations is applicable to other countries and settings. We at the City of Hope National Medical Center are currently participating in research titled “Simultaneous Care.” This project is supported by the National Cancer Institute (Dr Fred Myers, principal investigator, UC Davis Medical Center) and is a multisite study involving UC Davis, City of Hope National Medical Center, The Johns Hopkins University Cancer Center, and the University of Southern California to evaluate a model strategy by which JOURNAL OF CLINICAL ONCOLOGY E D I T O R I A L VOLUME 23 NUMBER 12 APRIL 2