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Goals of Care: Advanced Dementia

Guide a wife through the difficult decision about a feeding tube for her husband with end-stage Alzheimer's, addressing the fear of 'starving' him.

  1. 1
    Review Clinical Case
  2. 2
    Patient Encounter
  3. 3
    Self Evaluation(optional)
  4. 4
    Feedback

Review Clinical Case

1. Learning: Substituted Judgment in Advanced Dementia

Purpose of this Scenario

Decisions for patients with advanced dementia are uniquely challenging because the person they were is so different from the person they are now. This simulation focuses on using the principle of "substituted judgment"—making the choice the patient would have made for themselves, based on their known values and beliefs. It specifically addresses the emotionally charged decision about feeding tubes, where the instinct to provide nutrition conflicts with the evidence about quality of life.

Key skills include:

  • Explaining the limited benefits and potential harms of PEG tubes in advanced dementia.
  • Addressing the emotional fear of "starving" a loved one.
  • Guiding a caregiver to make a decision based on the patient's past values, not their own current grief.
  • Introducing and validating "comfort feeding" as a compassionate alternative.

2. Scenario Briefing: The Feeding Tube Decision

Your Objective

You are the primary care physician. Your goal is to have a goals of care discussion with Susan, the wife and healthcare proxy of your patient with end-stage Alzheimer's disease. The patient has lost the ability to swallow safely, and you must guide Susan through the decision of whether to place a PEG feeding tube.

Patient Background

Your patient is an 80-year-old man with end-stage Alzheimer's. He is bed-bound, non-verbal, and has been losing weight due to severe dysphagia (difficulty swallowing), which has led to a recent aspiration pneumonia. His wife of 50 years, Susan, is his devoted caregiver.

Crucial Information: Susan is exhausted and heartbroken. Her primary emotional barrier is the feeling that choosing not to place a feeding tube is equivalent to "starving him to death." She equates food with love and care.

Key Medical Facts

  • The Problem: Severe dysphagia in the context of advanced dementia.
  • The Evidence: Major medical societies agree that in advanced dementia, PEG tubes do not prolong life, reduce the risk of aspiration pneumonia (patients can still aspirate their own saliva), or improve quality of life. They can also cause complications like pain and local infection.
  • The Alternative: Careful hand feeding (also called comfort feeding) for pleasure, not for nutrition. This focuses on offering small amounts of enjoyable foods as long as the patient shows interest, prioritizing comfort and dignity over caloric intake.

Find a quiet spot with a good internet connection. Speak naturally — it’s fine to pause to think.