What does palliative care look like for an Acute Respiratory Distress Syndrome (ARDS) patient?

Palliative Care for ARDS Patients

Palliative care should begin immediately at ICU admission for ARDS patients and be delivered concurrently with curative/restorative care, with intensity adjusted based on patient and family needs throughout the disease course. 1

Core Framework: Integrated Concurrent Model

The American Thoracic Society strongly endorses an integrated model where palliative care starts at ICU admission—not after curative efforts fail—and runs parallel to life-sustaining treatments. 1 This approach recognizes that ARDS carries 46-60% mortality in severe cases and requires immediate attention to suffering alongside mechanical ventilation and other intensive interventions. 2

Key principle: Palliative care intensity should be titrated up and down analogously to curative care, responding to the patient's clinical trajectory and family preferences, with care continuing through bereavement after death. 1

Primary Clinical Components

Symptom Management

Dyspnea control is paramount and should follow a graduated approach: 1

• Mild dyspnea: Treat underlying disease and psychosocial factors
• Moderate dyspnea: Add pulmonary rehabilitation considerations and anxiolytics
• Severe dyspnea: Implement facial cooling, opioids for refractory breathlessness, and consider palliative sedation for intractable suffering 1

Pain management requires systematic assessment and treatment using established protocols, particularly given the high rates of critical illness myopathy, polyneuropathy, and prolonged immobilization in ARDS survivors. 1, 3

Communication and Decision-Making

Clinicians must establish core competencies including: 1

• Breaking bad news skillfully about the high mortality risk and potential for prolonged mechanical ventilation requiring tracheostomy
• Advance care planning initiated early, before the patient loses decision-making capacity from sedation or delirium
• Shared decision-making with families serving as surrogates, given most ARDS patients cannot participate directly due to mechanical ventilation
• Prognostication discussions addressing realistic survival expectations and quality of life outcomes 1

Goals of Care Transitions

When goals shift from primarily curative to primarily palliative, the ATS provides specific guidance on withholding and withdrawing life support. 1 This includes understanding the principle of double effect when using palliative sedation (formerly "terminal sedation") for refractory suffering during ventilator withdrawal. 1

Interdisciplinary Requirements

A comprehensive team approach is essential and must include: 1

• Pulmonary/critical care clinicians with palliative care competencies
• Palliative care specialists for consultation beyond the primary team's expertise 1
• Nursing, social work, pharmacy, physiotherapy, and spiritual care providers 4
• Cultural competence to respect diverse values and spiritual needs 1

Family and Caregiver Support

Family involvement and bereavement care are integral components, not optional additions: 1

• Families should be involved in planning and providing care to the extent desired by the patient
• Psychological support for families begins before death and continues through bereavement 1
• Support for professional caregivers must be acknowledged, given the emotional toll of high ARDS mortality 1

Long-Term Considerations for Survivors

For the 40-60% who survive severe ARDS, palliative care principles remain relevant as they face: 3

• Irreversible pulmonary fibrosis and functional decline
• Cognitive impairment and memory loss
• PTSD, depression, and anxiety
• Muscle weakness and ambulatory dysfunction
• Overall poor quality of life that can persist for years 3

Ongoing primary care with palliative care principles is beneficial for managing these chronic sequelae. 2

Critical Pitfalls to Avoid

• Do not wait until curative efforts fail to introduce palliative care—this outdated dichotomous model delays essential symptom management and communication 1
• Do not assume palliative care means giving up—it coexists with aggressive ICU management 1
• Do not neglect to consult palliative care specialists when situations exceed your competence level 1
• Do not forget that hospice enrollment may be appropriate for patients meeting criteria, providing multidisciplinary support 1

Access and Equity

All ARDS patients, regardless of age or social circumstances, should have access to palliative care as a fundamental right. 1, 4 Recent policy statements emphasize addressing health disparities and ensuring timely integration across diverse populations. 4