Palliative Care Early in the Care Continuum among Patients with Serious Respiratory Illness: An Official ATS/AAHPM/HPNA/SWHPN Policy Statement

Abstract

Background: Patients with serious respiratory illness and their caregivers suffer considerable burdens, and palliative care is a fundamental right for anyone who needs it. However, the overwhelming majority of patients do not receive timely palliative care before the end of life, despite robust evidence for improved outcomes. Goals: This policy statement by the American Thoracic Society (ATS) and partnering societies advocates for improved integration of high-quality palliative care early in the care continuum for patients with serious respiratory illness and their caregivers and provides clinicians and policymakers with a framework to accomplish this. Methods: An international and interprofessional expert committee, including patients and caregivers, achieved consensus across a diverse working group representing pulmonary-critical care, palliative care, bioethics, health law and policy, geriatrics, nursing, physiotherapy, social work, pharmacy, patient advocacy, psychology, and sociology. Results: The committee developed fundamental values, principles, and policy recommendations for integrating palliative care in serious respiratory illness care across seven domains: 1) delivery models, 2) comprehensive symptom assessment and management, 3) advance care planning and goals of care discussions, 4) caregiver support, 5) health disparities, 6) mass casualty events and emergency preparedness, and 7) research priorities. The recommendations encourage timely integration of palliative care, promote innovative primary and secondary or specialist palliative care delivery models, and advocate for research and policy initiatives to improve the availability and quality of palliative care for patients and their caregivers. Conclusions: This multisociety policy statement establishes a framework for early palliative care in serious respiratory illness and provides guidance for pulmonary-critical care clinicians and policymakers for its proactive integration.

Keywords: advance care planning; caregivers; healthcare disparities; lung diseases; quality of life.

Figure 1.

Levels of palliative care. This figure illustrates the who, where, what, and when of palliative care across three levels of increasing proficiency and expertise (primary, secondary or specialist, and tertiary palliative care). ACP = advanced care planning; GOC = goals of care.

Figure 2.

Multiphase iterative development of the policy statement. This figure illustrates the four phases of iterative development of the policy statement over multiple years through conceptualization (phase 1), preparation (phase 2), presentation, facilitation, and exploration (phase 3), and integration and compilation (phase 4).

Figure 3.

Primary and secondary palliative care integration in serious respiratory illness. This figure has three panels. In the top panel, the x-axis denotes patient wellbeing and function, and the y-axis denotes time. The top panel illustrates the hypothetical integration of palliative care across illness trajectories of lung cancer (red dashed line), pulmonary hypertension (blue line), and chronic obstructive pulmonary disease/interstitial lung disease (COPD/ILD; gold line), each punctuated by declines in wellbeing at hospitalizations (stars) and potential lung transplant referral (diamonds). The integration of primary palliative care (orange circles) starts early (see Figure 4 for triggers), and the integration of secondary palliative care (blue circles) is added later, but well before the end of life. In the middle panel, the x-axis denotes palliative care intensity, and the y-axis denotes time. Primary palliative care increases in intensity after initiation (expanding orange triangle) as serious respiratory illness worsens, and secondary palliative care starts later and also increases in intensity but layers on top of secondary palliative care (expanding blue triangle). Through ongoing comanagement, a period of collaborative primary and secondary palliative care (overlapping triangles) should occur as illness severity worsens through the end of life. The bottom panel illustrates how palliative care may evolve across a continuum of serious respiratory illness. When illness is less severe, palliative care occurs concurrent with illness-directed therapies and then shifts focus from cure to end-of-life care (e.g., hospice and bereavement support) near and after death. This figure is adapted by permission from Iyer, AF. The Role of Palliative Care in COPD. Chest 2022;161: 1250–1262.

Figure 4.

Triggers for initiating primary and secondary palliative care in serious respiratory illness: the levers model. Hypothetical triggers for primary and secondary palliative care occur across multiple domains: lung function, symptoms, care needs, exacerbations, advanced therapies, and caregivers. The x-axis denotes worsening illness severity, whereas the y-axis denotes multiple domains, each with a circle functioning as a lever that can move up or down, crossing a threshold for primary or secondary palliative care, illustrated by the dashed lines. Any one or multiple domains can cross a trigger threshold for consideration for primary or secondary palliative care initiation. For example, a person can trigger consideration for primary palliative care when their FEV₁ drops below 50% predicted (lung function domain). Also, a person can trigger consideration for secondary palliative care when their breathlessness becomes severe on the Modified Medical Research Council (mMRC) (symptoms domain). 6MWD = 6-minute-walk distance; CSNAT = carer support needs assessment tool. This figure is adapted by permission from Iyer, AF. The Role of Palliative Care in COPD. Chest 2022;161: 1250–1262.

Figure 5.

Continuum of advance care planning integration in serious respiratory illness. The continuum of ACP in serious respiratory illness is a longitudinal process of communication that begins soon after illness diagnosis (stage 1: first arrow) and increases in intensity on the basis of patient illness trajectory (stages 2–4). This process should be free of coercion, and clinicians should be alert to signs of patient distress or discomfort. Patient-designated surrogates or healthcare proxies should be included across all stages with patient permission. ACP = advance care planning.