Anarthric patient on BiPAP says 'I'm done' while her agent objects

Capacity is decision-specific, not global. Test it against this particular decision - stopping BiPAP - using the four elements: does she understand the relevant information, appreciate how it applies to her, reason about the options, and communicate a consistent choice? She is alert and answers consistently through a trained communication method, so she can likely meet the bar; document the actual exchange.

Before concluding, look for reversible confounders, because they change the assessment, not just the mood:

• Hypercapnia from chronic hypoventilation can produce apathy and flat affect that mimics depression or impaired appreciation. Get an ABG or at least a bicarbonate.
• Screen for depression with an adapted tool. Depression does not by itself remove capacity and is never a reason to override a refusal - but untreated depression, delirium, or sedating medications can impair the 'appreciation' element and must be addressed.
• Review the medication list for benzodiazepines, opioids, or anticholinergics; screen for pain and constipation.

Elena's request. Acknowledge her fear first - she is watching her mother decline and is terrified of colluding in her death. Then be clear: you cannot withhold information from, or exclude, the patient. Elena's authority as agent is contingent and only activates if her mother loses capacity; a patient with capacity is the decision-maker. Framing it as 'your job right now is to help me understand what she means,' rather than as a legal contest, keeps her engaged. Offer to have her present for the conversation and to have the speech-language pathologist or a second clinician witness the communication.

Open by naming the situation without an agenda: 'You've told us twice that you're done. I want to make sure I understand exactly what you mean before we plan anything. Elena is here because you asked her to be involved in your care, and I'll be asking you directly.'

Then clarify the referent - the single most important step. 'I'm done' can mean done with BiPAP, done with being a burden, done with the disease, done with the feeding tube, or it can be an expression of despair. Use the eye-gaze device with balanced option pairs rather than leading yes/no prompts, and allow generous time:

• 'When you typed I'm done - were you done with the BiPAP, or done with something else?'
• 'What is the worst part of the BiPAP for you right now?' (Listen for suffocation fear, mask pain, being trapped, dependency, nights alone.)
• 'What do you understand will happen if we stop it?' She should be able to state that she will likely die within days to weeks.
• 'Some people mean they want to die soon. Is that what you mean, or do you mean you want the mask off and whatever happens, happens?'

Then lay out the real options in neutral language: continue as is; continue with adjustments (mask refit, longer breaks, anxiolytic before resuming, treating depression); a defined time-limited trial; or stop BiPAP with a full comfort plan. Confirm her choice back to her explicitly and ask her to restate it. If her answers are inconsistent across two conversations, or hypercapnia is found, re-evaluate before acting.

Ethical/legal framing: discontinuing BiPAP at the informed request of a patient with capacity is withdrawal of a life-sustaining treatment and is legally and ethically permissible - it is not assisted suicide and does not require a court order. Her agent cannot override a capable refusal.

Document: the capacity assessment and the four elements as demonstrated; the exact words or device output she used; the alternatives presented and declined, including the time-limited trial; who was present; that she was offered the chance to change her mind; and that she was told the likely consequence.

Anticipatory orders - do not wait for the crisis:

• Opioid for dyspnea: low-dose morphine or fentanyl SC/IV, titrated to respiratory distress, not to a respiratory rate target. Have the starting dose and a PRN escalation ladder written in advance.
• Benzodiazepine for air hunger and anxiety (for example lorazepam 0.5-1 mg SL/SC q1h PRN).
• Fan, cool air on the face, upright positioning, mouth care, and a plan for secretions (glycopyrrolate or scopolamine).
• Deprescribing: stop statins, vitamins, glucose checks, and non-comfort medications; stop the feeding tube if she wishes; clarify code status.
• If distress is refractory despite titration, discuss with the attending in advance whether proportional palliative sedation is an option, so the on-call clinician is not improvising at 2 a.m.

Support: social work and chaplain for Elena, a private conversation in which her fear and guilt can be named, and an explicit statement that honoring her mother's choice is not abandoning her. Enroll or continue hospice, and set up bereavement follow-up. Note: patients with ALS sometimes survive longer than expected off NIV - make sure the family knows this is possible.