# Comparison of Palliative Care Models in Idiopathic Pulmonary Fibrosis
## 4 Discussion
In addition, patients' misperceptions and lack of knowledge about the role of PC may result in many declining such referrals [21]. Primary PC approach is particularly important for IPF patients, where unpredictable deterioration and death may occur early in the disease without the opportunity for timely referral and subsequent assessment by PC specialists [22]. Currently, there are no standardized specialist PC referral criteria in IPF, and reliance on physiological indicators of severity may not reflect patients' symptoms andneeds. Moreover, symptoms and needs change independent of physiology over time. In QC, PC referral criteria included dyspnea, oxygen use, and disease progression, generally based on physiology that may not detect many unrelated needs. PC co-management with referral to co-located PC clinics offers another option but may not reach all patients who need PC. ILD experts in this study perceived some barriers to this approach, including time required to coordinate, communicate, and discuss PC referral with their patients [23]. Our study also shows that primary PC models can improve dyspnea assessment and management, a research priority in IPF [24]. A meta-analysis concluded that breathlessness services that offer a multidisciplinary, holistic, and patient-centered approach, including non-pharmacogic therapies, allied health assessments, and education, were effective in reducing symptom distress [25]. Outside of a few such breathlessness services, and clinical studies of short duration, there are limited real-world examples of integrated dyspnea management in ILD [26]. Non-pharmacogic dyspnea therapies are seldom prescribed in IPF [27], even though they are core aspects of many integrated breathlessness services [20; 26; 28]. In the absence of such a comprehensive approach in most ILD clinics, dyspnea is not well managed [20; 27]. Adoption of a primary PC approach by ILD physicians facilitates early identification and management of dyspnea, including high rates of use of non-pharmacogic dyspnea strategies (pacing, energy conservation), as reported in EC and BC. The use of fans was also reported in >90% of BC cohort (data not shown). Higher proportion of patients in our study were on ambulatory oxygen overall (56%) when compared to around 20% in clinical trials cohorts and other registry studies [29; 30]. This is particularly important given recent evidence that suggests supplemental oxygen can improve quality of life and symptoms in fibrotic ILD in the short term [31]. Similarly, early use of opioids is noted in both the primary PC models in contrast to delayed use described in the literature; opioids are mostly initiated in the last week of life in IPF in absence of early PC [19]. The majority of the decedents in the primary PC models received PC in the last year of life, with high rates of symptom therapies, including non-pharmacogic strategies and oxygen use. Opioids were started at median 15 months before death. Of note, 80% of QC decedents had not been reviewed by the PC specialist and 50% of BC decedents died before their case was reviewed in PIP-MDT rounds. This highlights the unpredictable disease course with rapid progression and underscores the need for an early integrated palliative care approach. Use of a primary PC approach enabled PC therapies to be instituted in BC decedents without specialist PC input. Primary PC models also support early and ongoing ACP, an important patient perceived gap in IPF communication. ACP conversations seldom occur in IPF practice, even though most patients want these discussions early in the course [17; 19; 27; 32]. Studies suggest that early and integrated ACP can improve care and communication, help patients and families prepare for EOL, relieve anxiety, and facilitate patient preferences for place of death [8; 33; 34]. Literature shows that EOL care is poor and care decisions are delayed and infrequent. In a Finnish cohort, EOL decisions were recorded in only 32% (DNIR orders in 57%), and 42% were within the last 3 days of life [19].