ABSTRACT
OBJECTIVES: Family members commonly make medical decision for patients with chronic critical illness. This study examines how family members approach this decision-making role in real time. DESIGN: Qualitative analysis of interviews with family members in the intervention arm of a randomized controlled communication trial. SETTINGS: Medical ICUs at four U.S. hospitals. PARTICIPANTS: Family members of patients with chronic critical illness (adults mechanically ventilated for ≥ 7 d and expected to remain ventilated and survive for ≥ 72 hr) who participated in the active arm of a communication intervention study. INTERVENTIONS: Family members participated in at least two content-guided, informational, and emotional support meetings led by a palliative care physician and nurse practitioner. MEASUREMENTS AND MAIN RESULTS: Grounded theory was used for qualitative analysis of 66 audio recordings of meetings with 51 family members. Family members perceived their role in four main ways: voice of the patient, advocate for the patient, advocate for others, and advocate for oneself. Their decision-making was characterized by balancing goals, sharing their role, keeping perspective, remembering previous experiences, finding sources of strength, and coping with various burdens. CONCLUSIONS: Family members take a multifaceted approach as they participate in decision-making. Understanding how surrogates perceive and act in their roles may facilitate shared decision-making among clinicians and families during critical care.
Subject(s)
Chronic Disease/therapy , Critical Illness/therapy , Decision Making , Family/psychology , Caregivers , Female , Grounded Theory , Humans , Interviews as Topic , Male , Middle Aged , Patient Advocacy/psychology , Qualitative ResearchABSTRACT
RATIONALE: Information from clinicians about the expected course of the patient's illness is relevant and important for decision-making by surrogates for chronically critically ill patients on mechanical ventilation. OBJECTIVES: To observe how surrogates of chronically critically ill patients respond to information about prognosis from palliative care clinicians. METHODS: This was a qualitative analysis of a consecutive sample of audio-recorded meetings from a larger, multisite, randomized trial of structured informational and supportive meetings led by a palliative care physician and nurse practitioner for surrogates of patients in medical intensive care units with chronic critical illness (i.e., adults mechanically ventilated for ≥7 days and expected to remain ventilated and survive for ≥72 h). MEASUREMENTS AND MAIN RESULTS: A total of 66 audio-recorded meetings involving 51 intervention group surrogates for 43 patients were analyzed using grounded theory. Six main categories of surrogate responses to prognostic information were identified: (1) receptivity, (2) deflection/rejection, (3) emotion, (4) characterization of patient, (5) consideration of surrogate role, and (6) mobilization of support. Surrogates responded in multiple and even antithetical ways, within and across meetings. CONCLUSIONS: Prognostic disclosure by skilled clinician communicators evokes a repertoire of responses from surrogates for the chronically critically ill. Recognition of these response patterns may help all clinicians better communicate their support to patients and families facing chronic critical illness and inform interventions to support surrogate decision-makers in intensive care units. Clinical trial registered with www.clinicaltrials.gov (NCT 01230099).
Subject(s)
Chronic Disease/psychology , Critical Care/psychology , Critical Illness/psychology , Decision Making , Family/psychology , Palliative Care/psychology , Critical Care/methods , Female , Humans , Male , Middle Aged , Palliative Care/methods , Professional-Family Relations , Prognosis , Respiration, Artificial/psychology , Respiration, Artificial/statistics & numerical dataABSTRACT
CONTEXT: Palliative care consultation services (PCCS) decrease costs for patients by matching treatments received to patients' and families' goals of care. However, few studies have examined the costs of a specialized palliative care unit (PCU). OBJECTIVES: To quantitatively describe Mount Sinai Hospital's PCU's first two years of operation; to examine how patient-related costs changed in the days before and after transfer to PCU; and to compare cost savings of PCU to those of PCCS. METHODS: Cost and administrative data from PCU patients from the first 24.5 months of our PCU's operation were analyzed. To compare costs between PCU and PCCS patients, we matched PCU patients to similar PCCS patients and used propensity scores to adjust for differences across groups. RESULTS: The PCU admitted 1107 patients in its first 24.5 months. Over this time frame, there was a statistically significant (P < 0.001) decrease in average daily direct costs per patient. The mean of patients' average cost per day was $687 less while on the PCU than before transfer to PCU. Among patients who died in the hospital, average daily direct cost per patient in the days after transfer to PCU was $240 lower as compared with patients being followed by PCCS on the general hospital wards (SE = $45, P < 0.001). CONCLUSION: Among patients who died in the hospital, transfer to a PCU is associated with significant cost savings as compared with patients on hospital wards who are seen by a PCCS.
