Health Care Costs at the End of Life for Patients with Idiopathic Pulmonary Fibrosis. Evaluation of a Pilot Multidisciplinary Collaborative Interstitial Lung Disease Clinic.

Rationale: Even though idiopathic pulmonary fibrosis (IPF) is a disease with high morbidity and mortality and no cure, palliative care is rarely implemented, leading to high symptom burden and unmet care needs. In 2012, we implemented a multidisciplinary collaborative (MDC) care model linking clinic and community multidisciplinary teams to provide an early integrated palliative approach, focusing on early symptom management and advance care planning.Objectives: To evaluate the differences in resource use and associated costs of end-of-life care between patients with IPF who received early integrated palliative care and patients with IPF who received conventional treatment.Methods: Using administrative health data, we identified all patients in the Province of Alberta, Canada, who presented to a hospital with an IPF diagnosis between January 1, 2012, and December 31, 2018, and died within this time frame. We compared three groups of patients: those who received MDC care (our clinic patients), specialist care (SC; respirologist), or non-specialist care (NSC; no contact with a respiratory clinic). The primary outcomes were healthcare resource use and costs in the year before death.Results: Of 2,768 patients across the three study groups, in the last year of life, MDC patients were more than three times as likely as SC patients to have received antifibrotic therapies (odds ratio [OR], 3.0; 95% confidence interval [CI], 1.8-5.2), almost twice as likely to have received pulmonary rehabilitation (OR, 1.9; 95% CI, 1.1-3.4), and 36% more likely to have received opiates (OR, 1.4; 95% CI, 0.8-2.3). The median total healthcare costs in the last 3 months of life were approximately C$7,700 lower for MDC patients than for those receiving SC, driven primarily by fewer hospitalizations and emergency department visits. MDC patients were also less likely to die in the hospital (44.9% MDC vs. 64.9% SC vs. 66.8% NSC; P < 0.001) and had the highest rates of no hospitalization in the last year of life.Conclusions: An integrated palliative approach in IPF is associated with improvements in the quality of end-of-life care and reduction in costs. Transformation of care models is required to deliver palliative care for patients with IPF. MDC teams within such models can address the high burden of unmet needs for symptom management, advance care planning, and community support in this complex population.

Early integrated palliative approach for idiopathic pulmonary fibrosis: A narrative study of bereaved caregivers' experiences.

BACKGROUND: Idiopathic pulmonary fibrosis has an uncertain and rapid trajectory after diagnosis. Palliative care is rarely utilized, although both patients and caregivers experience a distressingly high symptom burden. Most patients die in hospital. AIM: The purpose of this study was to explore bereaved caregivers' experiences and perceptions of an early integrated palliative approach implemented at a Multidisciplinary Interstitial Lung Disease Clinic. DESIGN: A narrative approach was used, with thematic and content analysis of open-ended interviews. SETTING/PARTICIPANTS: The clinic is located in a large western Canadian city. Caregivers of deceased patients were recruited through purposive sampling. The eight participants were either spouses or adult children. RESULTS: Five major themes were identified: Having a Terminal Disease; Planning Goals and Wishes for Care; Living Life and Creating Memories; Feeling Strain and Responsibility; and Nearing the End. Caregivers had little understanding of prognosis prior to advance care planning conversations at the clinic. Advance care planning conversations enabled caregivers to know and support patients' goals and wishes. Caregivers described feeling informed, prepared, and supported when death was near. They expressed neither distress nor anxiety related to patients' symptoms or strain of relationships. CONCLUSION: Collaboration and close communication among caregivers, respirologists, and home care enabled effective symptom management and out of hospital deaths. Patients and caregivers had opportunities to enjoy events, create memories, determine preferences, and make plans. Further research on an early integrated palliative approach in Idiopathic Pulmonary Fibrosis is warranted related to quality of life, experience with death and dying, and caregiver bereavement.

Beyond Idiopathic Pulmonary Fibrosis Diagnosis: Multidisciplinary Care With an Early Integrated Palliative Approach Is Associated With a Decrease in Acute Care Utilization and Hospital Deaths.

CONTEXT: Idiopathic pulmonary fibrosis (IPF) is a progressive, incurable interstitial lung disease with heavy symptom burden and poor quality of life. The last year of life is characterized by increased acute care utilization and hospital deaths. Clinical guidelines recommend early integration of palliative care but are rarely implemented. In 2012, we reorganized our clinic into a multidisciplinary team comprising two pulmonologists (expertise in interstitial lung disease and palliative respiratory care, respectively), nurse, respiratory therapist, physiotherapist, and a dietitian. We adopted an early integrated palliative approach with a focus on early symptom management and advance care planning starting at the first clinic visit. We designed a Multidisciplinary collaborative (MDC) care model with emphasis on community-based care to manage patients in their homes and support caregivers. OBJECTIVES: Exploratory analysis of this model's association with acute care utilization in the last year of life and location of death was undertaken. METHODS: Data from deceased IPF patients before and after 2012 (non-MDC and MDC care model, respectively) were collected, and statistical analysis was performed. RESULTS: Patients in MDC care were 24.2 times less likely to have respiratory-related emergency room visits (95% CI: 3.12-187.44, P = 0.002), 2.32 times less likely to have respiratory-related hospitalizations (95% CI: 0.95-5.6, P = 0.064). The odds of achieving a home or hospice death in MDC care were 9.2 times compared to non-MDC care, who die mostly in the hospital (95% CI: 1.14-75, P = 0.037). CONCLUSIONS: MDC care model for IPF was associated with reduced health care use in the last year of life and more home deaths.