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Specialty Palliative Care Program ILD

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Palliative Care in Lung Disease

Part of the book series: Respiratory Medicine ((RM))

Abstract

Patients with fibrotic interstitial lung diseases (ILD) suffer from disabling symptoms like shortness of breath, cough, and fatigue and other unmet care needs that rob them of a good quality of life (QOL) that is often cut short. These progressive fibrosing ILDs have no cure, and the approved antifibrotic therapies and immunosuppressants do not alleviate symptoms or improve health-related QOL. Therefore, clinical guidelines recommend early integration of palliative care to address these concerns and provide support to patients and their families. Despite recommendations, palliative care is rarely implemented in practice. In the absence of an integrated palliative approach, current clinic models are unable to provide comprehensive care, thus failing to alleviate an enormous burden shouldered by patients and their families. A multidisciplinary collaborative care (MDC) model was implemented at the ILD clinic at the University of Alberta in Edmonton, Canada, to address these care gaps. The MDC model includes an integrated palliative care approach and aims to provide palliative care throughout the patient journey from diagnosis to end of life without referral to specialist palliative care. The model includes an interdisciplinary clinic and community-based teams composed of specialist physicians, allied professionals, nurses and nurse practitioners, and nonmedical partners. The clinical teams were trained in the respiratory palliative care approach. Preclinic screening identifies patients with needs who undergo systematic symptom assessment using a locally developed tool at every visit. Early and consistent engagement of patients and families in decision-making ensures development of personalized symptom action plans and advance care planning conversations that address care, education, and informational needs. Dynamic collaboration among the teams provides care continuity and support as needs escalate between clinic visits. Model audit revealed (1) improved symptom care and advance care planning, (2) high care satisfaction and perceived QOL and death, (3) decreased hospitalizations and hospital deaths, and (4) cost savings compared to traditional care.

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Acknowledgment

I thank Dr. Janice Richman-Eisenstat for sharing protocols and her unwavering support, wisdom, and inspiration; the ILD clinic staff and Alberta Health Services Continuing care services (community teams – home care, rehab, and palliative care) for their exceptional service, and all ILD patients and their families, who, through their feedback, generosity, and efforts, allow us to learn and improve the program to better serve their needs.

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Authors and Affiliations

  1. Division of Pulmonary Medicine, Department of Medicine, University of Alberta, Edmonton, AB, Canada

    Meena Kalluri

  2. Alberta Health Services, Edmonton, AB, Canada

    Meena Kalluri

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Correspondence to Meena Kalluri .

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Editors and Affiliations

  1. College of Nursing, Medical University of South Carolina, Charleston, SC, USA

    Kathleen O. Lindell

  2. Department of Medicine, Johns Hopkins University, Baltimore, MD, USA

    Sonye K. Danoff

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Kalluri, M. (2021). Specialty Palliative Care Program ILD. In: Lindell, K.O., Danoff, S.K. (eds) Palliative Care in Lung Disease. Respiratory Medicine. Humana, Cham. https://doi.org/10.1007/978-3-030-81788-6_16

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