The Daughter Who Wants Everything Done
Mrs. Novak is 90 and has advanced dementia and stage 4 pressure injury. She no longer recognizes her daughter, eats a few spoonfuls at meals, and has had two hospital stays in three months. Her signed advance directive says 'comfort care only; no feeding tube; no CPR.' Her daughter, who is the health care proxy, now says, 'Put in the tube and do everything. I can't lose her.' The physician is due in an hour. The aide has been feeding her and knows she coughs with thin liquids.
1. What should the care team do with the daughter's request, and how should the aide contribute?
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The team should treat the daughter's grief as real and not simply say 'the directive says no.' The aide can report what she observes: how much Mrs. Novak eats, coughing with thin liquids, and comfort during care. The nurse and physician should meet with the daughter, explain what a feeding tube would and would not do in advanced dementia, and ask what her mother valued. The advance directive is the clearest statement of Mrs. Novak's wishes, and a proxy is expected to follow those wishes, not override them. The team should offer a comfort-focused plan: thickened liquids, oral care, small favored foods, and pain control. If the daughter still disagrees, the team should involve the ethics committee and social work. The aide should not argue with the daughter or promise a tube.
2. The daughter says, 'If you don't put in the tube, you're killing her.' How should the nurse answer?
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The nurse should respond with empathy first: 'You are afraid of losing her, and that is love, not a failure.' Then clarify: stopping a treatment that cannot restore her is not killing; it is allowing the disease to take its course, and the goal shifts to comfort. The nurse can explain that a feeding tube in advanced dementia often causes agitation, restraint use, and aspiration, and does not prolong meaningful life. The nurse should state that the team will not abandon her: they will treat pain, keep her clean, offer oral care, and keep the daughter involved. The nurse should not say 'there is nothing more to do.' The nurse should document the conversation and request an ethics consult if the conflict persists.