Is home care possible for patients with Acute Respiratory Distress Syndrome (ARDS) and can families request removal of mechanical ventilation?

Home Care and Ventilator Withdrawal in ARDS

Families have the absolute legal and ethical right to request removal of mechanical ventilation, and this request must be honored regardless of the medical team's assessment of potential benefit, though home care for acute ARDS patients on mechanical ventilation is not feasible during the acute phase. 1, 2

Family Rights Regarding Ventilator Withdrawal

Patient autonomy is paramount—families acting as surrogates can request withdrawal of mechanical ventilation even when the medical team believes it could extend life. 1, 2

• The essential ethical principle is that while patients cannot demand specific treatments, their refusal of life-sustaining interventions like mechanical ventilation must be respected. 2
• Once a decision has been made to withdraw mechanical ventilation, consensus should be reached on when and how this will occur, and who will be present. 1
• The family should be informed beforehand what they may expect to see and hear during the dying process, with assurances that discomfort will be minimized through vigilant nursing and medical care. 1

Process of Ventilator Withdrawal

There is no single correct method for withdrawing ventilation—both terminal extubation (immediate removal) and terminal weaning (gradual reduction) are acceptable approaches, with the choice guided by patient/surrogate preferences and anticipated symptom burden. 1

• Neuromuscular blockers must be discontinued and their effects allowed to wear off or be reversed before withdrawal. 1
• Administer anticipatory titrated doses of opioids and benzodiazepines to alleviate dyspnea and anxiety after withdrawal of mechanical ventilation. 1, 2
• Health care providers must remain vigilant to regularly assess for signs of dyspnea and pain after removal from assisted breathing, continuing to titrate opioids and benzodiazepines to maintain satisfactory control. 1
• The responsible physicians should personally conduct and accompany the implementation of ventilator withdrawal—this task should not be left to nursing staff alone. 1

Home Care Feasibility for Acute ARDS

Home care is not possible during the acute phase of ARDS requiring mechanical ventilation, as these patients need intensive care unit-level monitoring and support. 1, 3

• Acute ARDS requires lung-protective mechanical ventilation with tidal volumes of 4-8 ml/kg predicted body weight, plateau pressures ≤30 cmH₂O, and often prone positioning for 12-16 hours daily if PaO₂/FiO₂ <150 mmHg. 3
• These patients frequently need neuromuscular blockade, precise PEEP titration, and continuous monitoring for complications including barotrauma and hemodynamic instability. 1, 3
• In-hospital mortality for severe ARDS ranges from 46% to 60%, reflecting the critical nature of this illness. 4

Home Mechanical Ventilation After ARDS Recovery

Home mechanical ventilation becomes an option only after unsuccessful weaning from acute illness, representing a chronic respiratory insufficiency state rather than acute ARDS management. 1

• Patients receiving home mechanical ventilation should receive routine and standardized outpatient palliative care as part of their home care. 1
• If there is no hope of improvement or no longer any purpose for patients with home mechanical ventilation, a change of therapy goal with possible termination of ventilation therapy should be discussed and implemented with the patient and relatives. 1
• The indication for continued long-term ventilation should be assessed individually, critically, and ideally independently, considering the patient's prognosis and quality of life. 1
• Quality of life and happiness is significantly reduced in such patients after one year of long-term survival, and suffering can be unnecessarily prolonged. 1

Critical Communication Requirements

Physicians must invest adequate time in skillful, sensitive discussions that acknowledge the family's feelings, cultural and spiritual context, and past experiences with similar situations. 1

• Discuss not only what will be discontinued but also what will be continued to ensure the patient's and family's comfort and well-being. 1
• Include plans to acknowledge and respect the patient through development of an individualized plan—playing music, saying prayers, conducting spiritual ceremonies, making clothing choices, grooming, and connecting with family and friends. 1
• The family should appreciate that it is difficult to predict how long a patient will continue to breathe after ventilator withdrawal. 1
• Nursing, pastoral care, and hospice support may be especially helpful during these discussions. 1

Common Pitfalls to Avoid

• Do not frame ventilator withdrawal as solely a "family decision"—while family input is valuable for understanding the patient's values, the medical team must make recommendations based on the patient's best interests and known values. 2
• Do not delay palliative care consultation—clinicians delivering ventilatory support should have ready access to palliative medicine expertise. 2
• Do not equate "prolonging life" with benefit—quality of life and patient autonomy take precedence over duration of survival. 2
• Avoid "prognostic pessimism" bias—while clinicians consistently underestimate survival, this reality does not justify overriding legitimate requests for withdrawal when aligned with patient values. 2

Prognostic Context for Decision-Making

• Long-term survival at 60 days to 1 year for ARDS patients requiring mechanical ventilation ranges from 50-73%, with greater than 84% of survivors breathing independently. 5
• However, ARDS survivors face significant long-term complications including cognitive impairment, memory loss, posttraumatic stress disorder, depression, anxiety, muscle weakness, ambulatory dysfunction, and overall poor quality of life. 6
• These quality-of-life implications should be transparently discussed when families are considering goals of care. 5