Both maintaining hope and preparing for death: Effects of physicians' and nurses' behaviors from bereaved family members' perspectives

Context: Both maintaining hope and preparing for the patient's death are important for families of terminally ill cancer patients. Objectives: The primary aim of this study was to clarify the level of the family's achievement of maintaining hope and preparing for death and the professional's behavior related to their evaluations. Methods: A cross-sectional, anonymous, nationwide survey was conducted involving 663 bereaved families of cancer patients who had been admitted to 100 palliative care units throughout Japan. Results: A total of 454 family members returned the questionnaire (effective response rate, 68%). Overall, 73% of families reported that they could both maintain hope and prepare for the patient's death. The independent determinants of the family's agreement in reference to the professional's behavior are pacing the explanation with the family's preparation; coordinating patient and family discussions about priorities while the patient was in better condition; willingness to discuss alternative medicine; maximizing efforts to maintain the patient's physical strength (e.g., meals, rehabilitation); discussing specific, achievable goals; and not saying "I can no longer do anything for the patient." Conclusion: About 20% of family members reported that they could neither "maintain hope nor prepare for death." A recommended care strategy for medical professionals could include 1) discussing achievable goals and preparing for the future and pacing explanation with the family's preparation, 2) willingness to discuss alternative medicine, 3) maximizing efforts to maintain the patient's physical strength, and 4) avoid saying they could do nothing further for the patient.