Palliative care in interstitial lung disease: living well

Abstract

Progressive fibrotic interstitial lung diseases (ILDs) are characterised by major reductions in quality of life and survival and have similarities to certain malignancies. However, palliative care expertise is conspicuously inaccessible to many patients with ILD. Unmet patient and caregiver needs include effective pharmacological and psychosocial interventions to improve quality of life throughout the disease course, sensitive advanced care planning, and timely patient-centred end-of-life care. The incorrect perception that palliative care is synonymous with end-of-life care, with no role earlier in the course of ILD, has created a culture of neglect. Interventions that aim to improve life expectancy are often prioritised without rigorous assessment of the individual's health and psychosocial needs, thereby inadvertently reducing quality of life. As in malignant disorders, radical interventions to slow disease progression and palliative measures to improve quality of life should both be prioritised. Efficient patient-centred models of palliative care must be validated, taking into account religious and cultural differences, as well as variability of resources. Effective implementation of palliative care for ILD will require multidisciplinary participation from clinicians, specialist nurses, psychologists, social workers, and, in some countries, non-governmental faith and community-based organisations with access to palliative care expertise.

Palliative care for people with COPD: effective but underused

“…It involves close attention to the emotional, spiritual and practical needs and goals of patients and of the people who are close to them, including determining their views on future care through advance directives [8]. Palliative care is not only relevant for people with advanced COPD, it is important for people with other non-malignant respiratory diseases including interstitial lung disease and bronchiectasis [9,10]. Both palliative care and rehabilitation have the same aims, and some regard rehabilitation as a palliative approach, but most would see rehabilitation as a powerful component of active restorative care, with palliative care focusing on improving symptoms and quality of life when active approaches are not succeeding.…”

Current and future perspectives on management of systemic sclerosis-associated interstitial lung disease

“…Although limited evidence is available on the effectiveness of non-pharmacologic interventions in patients with SSc [74], patients with SSc-ILD should be offered supportive care individualized to the needs of the patient [75][76][77]. This should include patient education and may also include oxygen supplementation, pulmonary rehabilitation, and vaccinations.…”

Palliative care for patients with pulmonary fibrosis: symptom relief is essential

“…Once symptom burden is accurately assessed, there are a number of pharmacological and nonpharmacological therapies available to reduce symptom burden [6,10,11]. These include regular counselling, anxiolytic and anti-depressive medications, low-dose narcotics, pulmonary rehabilitation, supplemental oxygen therapy, and early referral to palliative care to alleviate symptom burden and address advance care planning, with the ultimate goal of improving quality of life [3,12,13].…”

“…This calls for comprehensive symptom management and integrated palliative care concomitant with disease-modifying therapies as soon as the patient is diagnosed with the PF-ILD. The incorrect perception that palliative care is synonymous with end of life care, with no role earlier in the course of ILD, has created a culture of neglect [12]. The stigma of prescribing opioids and benzodiazepines contributes to the symptom burden that patients unnecessarily suffer [12,16].…”