Dose, Ann Marie

Background Although most patients express a preference to die at home, many (over 30 percent) still die in hospital. This study's purpose was to explore the experience of hospital death from the perspective of patients’ family members. Methods Interviews were conducted with family members of patients who had died at hospitals affiliated with a large tertiary referral centre in the United States. Content analysis was used to analyze findings. Findings We interviewed 30 family members by phone. Themes were arranged by time frame: before death, time of death, and after death. Conclusion Families do not interpret clinical cues leading up to death in the same way healthcare providers do; families need clear and direct explanations from providers. Clinicians should assess patient and family understandings of prognosis and communicate clearly and directly. Family members value being with their loved one at the time of death, and they value spending time with the body after death; this should be facilitated in clinical practice.

Background: The quality of perimortem care received by patients who died at our hospitals was unknown. Objective: To describe the quality of hospital care experienced in the last week of life, as perceived by decedents’ families. Design: Telephone survey that included established measures and investigator-developed content. Setting: Large, tertiary care center known for high-quality, cost-effective care. Participants: Family members of 104 patients who died in-hospital (10% of annual deaths) over the course of 1 year. Intervention: None. Measurements: Participant perceptions of the decedent’s care, including symptom management, personal care, communication, and care coordination. Results: Decedents were mostly male (64%), white (96%), married (73%), and Christian (91%). Most survey participants were spouses of the decedent (68%); they were predominately white (98%), female (70%), and Christian (90%) and had a median age of 70 years (range, 35-91 years). Overall satisfaction was high. Pain, dyspnea, and anxiety or sadness were highly prevalent among decedents (73%, 73%, and 55%, respectively) but largely well managed. Most participants believed that decedents were treated respectfully and kindly by staff (87%) and that sufficient help was available to assist with medications and dressing changes (97%). Opportunities for improvement included management of decedents’ anxiety or sadness (29%) and personal care (25%), emotional support of the family (57%), communication regarding decedents’ illness (29%), and receiving contradictory or confusing information (33%). Conclusion: Despite high satisfaction with care overall, we identified important unmet needs. Addressing these gaps will improve the care of dying patients.

225 Background: Recent guidelines promote simultaneous palliative care with active treatment for advanced/metastatic cancers, including interventions addressing all quality of life (QOL) domains. Dignity Therapy (DT) is an intervention demonstrating promising outcomes at end of life. It has not been offered earlier to cancer patients nor paired with a Life Plan (LP) intervention. The purpose of this phase I/II feasibility study was to determine the feasibility, acceptability and selected patient-reported outcomes (PROs) of the Dignity Therapy/Life Plan intervention and pilot study methods in advanced pancreatic cancer patients pursuing chemotherapy. Methods: DT is a brief psychotherapeutic intervention consisting a focused life review/values clarification delivered during 3 outpatient oncology clinic visits. Interviews were audiotaped, transcribed, and edited to produce a Generativity Document, which the patient can later share with family. Life Plan is a type of “bucket list”, where patients document future hopes/dreams. Feasibility was evaluated, distress measured with the Distress Thermometer (0-10 scale) and QOL measured with the Linear Analogue Self Assessment (LASA, 0-10 scale). Baseline scores of distress and QOL were compared with scores after the intervention, 4-6 weeks later (Time 2 [T2]). Results: Ten pancreatic adenocarcinoma patients enrolled, mean age 63. Two-thirds of those recruited enrolled; 90% completed all study procedures. Two-thirds were satisfied/very satisfied with DT/LP, and 78% found study participation worthwhile, DT/LP timing to be just right and would recommend DT/LP to others. QOL improved (baseline mean = 7.0; T2 = 7.25). Distress scores improved (Baseline mean = 6.13; T2 = 5.63). Conclusions: Distress and QOL modestly improved from baseline to T2. Baseline scores were collected before patients had begun any chemotherapy, therefore any improvements while undertaking aggressive chemotherapy are noteworthy. Participants felt the intervention was acceptable and better than they had expected. Conducting DT/LP in an outpatient oncology setting for newly diagnosed pancreatic cancer patients is both feasible and acceptable. Outcomes are encouraging for future larger scale trials. Clinical trial information: NCT02132325.