Goals of care: feeding decisions in advanced dementia

Scenario setup

Conversation partner: Susan, Wife and healthcare proxy of the patient
Learner level: Clinical
Your role: Clinical medical student on the hospital team
Your scope: Help with a supervised feeding-decision discussion using the supplied facts. The supervising physician confirms the care plan; you do not independently order or withhold treatment.
Setting: A quiet family meeting room on the hospital ward
Situation: Susan’s husband has advanced dementia, progressive swallowing difficulty and a recent aspiration pneumonia. A feeding tube has been raised as an option, and she needs help understanding the decision.
Your task: Explore Susan’s understanding and her husband’s values, explain the feeding options and support an informed next step with the supervising team. A specific decision is not required.
Time limit: 2 min
Who begins: You speak first. Your conversation partner waits for you.

Available information

Patient and current illness: The patient is an 80-year-old man with advanced Alzheimer’s disease. He is bed-bound, non-verbal and dependent for care, with weight loss and severe swallowing difficulty. He is hospitalized with aspiration pneumonia.
Conversation partner: Susan, 72, is his wife of 50 years and healthcare proxy. He cannot make this feeding decision himself.
Current course and team assessment: His eating and swallowing difficulties have progressed over several months before this admission. The hospital team is treating the pneumonia and reviewing treatable contributors to poor intake. They do not expect a feeding tube to reverse his dementia. No exact survival estimate has been established.
What a feeding tube does: A PEG is a tube placed through the abdominal wall into the stomach to deliver nutrition, fluids and medicines. It does not reverse dementia or eliminate aspiration from secretions or reflux.
Evidence and burdens: In advanced dementia, tube feeding has not been shown to improve survival or comfort compared with hand feeding, and does not reliably prevent aspiration pneumonia. Burdens can include site infection, leakage and distress; some patients require measures to prevent pulling the tube out.
Continued feeding and comfort care: The team proposes an individualized assisted-feeding plan: offer small amounts when he is alert and interested, position him upright, and pause if feeding causes distress. Food and fluids are offered as tolerated, with mouth care and symptom assessment. Neither approach eliminates aspiration risk.
Addressing fear without false certainty: His subjective hunger cannot be known with certainty. Reduced intake can accompany advanced dementia. Choosing against a tube is not choosing against care: assess discomfort and continue appropriate assisted feeding and mouth care.
Decision support: Explore his previously expressed preferences and values with Susan. If wishes cannot reasonably be inferred, discuss likely benefits and burdens with the supervising team. Support Susan without labeling her grief or fear as selfishness.
Supervision and follow-up: You are a clinical medical student helping with a supervised family discussion. Bring Susan’s questions, preferences and any unresolved disagreement to the supervising physician; they will confirm the care plan. This visit does not independently set resuscitation, hospitalization or hospice decisions.

What you’re assessed on

Explore his values: Ask Susan about the person her husband was, what mattered to him and any prior wishes. Follow up on her answers without inventing a specific directive.
Respond to Susan’s emotions: Recognize Susan’s distress and the meaning feeding has for her. Address her fear of starving him with compassion and continued support, without shame or false reassurance.
Explain the illness and feeding options: Explain how advanced dementia affects eating, what a tube can and cannot do, its burdens, and the assisted-feeding alternative. Be honest about aspiration risk and uncertainty about hunger and prognosis.
Build a shared next step: Offer a reasoned recommendation, invite Susan’s response and agree on a concrete next step with the supervising team. Continued uncertainty or a request for more discussion is acceptable; do not pressure a particular decision.
Check Susan’s understanding: Ask what Susan understands before adding information, then check what she understood and confirm or clarify it. Use her questions to guide the explanation.
Apply his values to the decision: Help Susan consider how her husband’s known values relate to the feeding options. Distinguish known wishes from uncertainty and seek team guidance when his preferences cannot be inferred.