Andrea C. Enzinger

Examining Forms of Spiritual Care Provided in the Advanced Cancer Setting.

Spiritual care (SC) is important to the care of seriously ill patients. Few studies have examined types of SC provided and their perceived impact. This study surveyed patients with advanced cancer (N = 75, response rate [RR] = 73%) and oncology nurses and physicians (N = 339, RR = 63%). Frequency and perceived impact of 8 SC types were assessed. Spiritual care is infrequently provided, with encouraging or affirming beliefs the most common type (20%). Spiritual history taking and chaplaincy referrals comprised 10% and 16%, respectively. Most patients viewed each SC type positively, and SC training predicted provision of many SC types. In conclusion, SC is infrequent, and core elements of SC—spiritual history taking and chaplaincy referrals—represent a minority of SC. Spiritual care training predicts provision of SC, indicting its importance to advancing SC in the clinical setting.

Clinical trial participation as part of end-of-life cancer care: associations with medical care and quality of life near death.

CONTEXT Clinical trials are a common therapeutic option for patients with advanced incurable cancer. OBJECTIVES To examine the associations between trial participation and end-of-life (EOL) outcomes, including aggressive care and quality of life (QOL). METHODS Coping with Cancer, a multicenter prospective cohort study of patients with metastatic cancer, progressed after at least first-line chemotherapy. Baseline chart review documented clinical trial participation. Baseline interviews assessed psychosocial characteristics and EOL preferences. Caregiver interview and chart review assessed medical care and QOL near death. The primary outcome was aggressive EOL care (ventilation, resuscitation, or intensive care unit admission in last week of life). Propensity score weighting balanced patient characteristics that differed by trial participation, including care preferences and EOL discussion. Propensity score-weighted regression models estimated the effect of trial participation on outcomes. RESULTS Of 352 patients followed to death, 37 were enrolled in a clinical trial at baseline. In propensity score-weighted analyses, trial participation was significantly associated with aggressive EOL care (21.6% vs. 12.0%, adjusted odds ratio [AOR] 2.04, 95% confidence interval [CI] 1.00-4.15), late hospice enrollment (51.4% vs. 42.2%, AOR 1.96, 95% CI 1.10-3.50), hospital death (48.6% vs. 25.7%, AOR 2.74, 95% CI 1.37-5.47), intensive care unit death (16.2% vs. 6.3%, AOR 3.53, 95% CI 1.29-9.65), and inferior QOL near death (least squares mean 5.93 vs. 7.69, P<0.001). Controlling for EOL care, trial enrollment was no longer associated with QOL near death (P=0.342). CONCLUSION Clinical trial participation is associated with aggressive EOL care. Aggressive EOL care appears to explain the association between trial participation and QOL near death.

A stakeholder-driven approach to improve the informed consent process for palliative chemotherapy

OBJECTIVE Patients often anticipate cure from palliative chemotherapy. Better resources are needed to convey its risks and benefits. We describe the stakeholder-driven development and acceptability testing of a prototype video and companion booklet supporting informed consent (IC) for a common palliative chemotherapy regimen. METHODS Our multidisciplinary team (researchers, advocates, clinicians) employed a multistep process of content development, production, critical evaluation, and iterative revisions. Patient/clinician stakeholders were engaged throughout using stakeholder advisory panels, featuring their voices within the intervention, conducting surveys and qualitative interviews. A national panel of 57 patient advocates, and 25 oncologists from nine US practices critiqued the intervention and rated its clarity, accuracy, balance, tone, and utility. Participants also reported satisfaction with existing chemotherapy IC materials. RESULTS Few oncologists (5/25, 20%) or advocates (10/22, 45%) were satisfied with existing IC materials. In contrast, most rated our intervention highly, with 89-96% agreeing it would be useful and promote informed decisions. Patient voices were considered a key strength. Every oncologist indicated they would use the intervention regularly. CONCLUSION Our intervention was acceptable to advocates and oncologists. A randomized trial is evaluating its impact on the chemotherapy IC process. PRACTICE IMPLICATIONS Stakeholder-driven methods can be valuable for developing patient educational interventions.