Table 2.

Steps to Decision Making in Cases of Advanced Dementia.

Step	Description	Application to the Vignette
1. Clarify the clinical situation	Educate health care proxy about advanced dementia. Explain that it is a terminal illness and describe its clinical course. Explain the most likely clinical problems.	Explain to the daughter that her father’s prognosis is limited because of his advanced dementia, which is a terminal illness; eating problems and infections are expected complications.10,19 His presumed aspiration pneumonia is a consequence of swallowing problems, which are likely to be ongoing.
2. Establish the preferred level or goal of care	Base the decision about care on the perceived preferences of the patient. Follow basic tenet of surrogate decision making.14 Is the preference for only treatments that promote comfort, for all available medical interventions that may prolong life, or for a “middle of the road” approach that includes potentially curative but relatively conservative treatments with the goal of the patient’s return to baseline status?	Did the father previously express any wishes for his medical care? Are there existing advance directives? On the basis of the father’s values, what does the daughter think he would want? What does she think is in his best interest?
3. Align treatment options with preferred level or goal of care	Describe treatment options for specific clinical problems. Describe advantages and disadvantages of options on the basis of the best available evidence. Acknowledge limitations of data, including lack of randomized, controlled trials. Once the proxy has been fully informed and counseled, respect the proxy’s choices. Be sensitive to cultural background. Include hospice referral and palliative care consultation in the treatment plan when appropriate. Revisit the goals of care as the clinical status evolves.	For pneumonia: If the daughter prefers comfort care for her father, treat symptoms only (e.g., with antipyretics and oxygen). For the middle-of-the-road approach, start antimicrobials at the nursing home, minimizing the treatment burden as much as possible. Antimicrobials may prolong life for several months, but their administration may cause discomfort20 and can have adverse effects, including acquisition of multidrug-resistant organisms.21 Hospitalize only if the daughter thinks that her father would want all potentially life-prolonging treatments. Hospitalization may be traumatic and unnecessary for the treatment of pneumonia20,22 but provides immediate access to life-sustaining interventions. For eating problems (if acute infection resolves): If comfort care or the middle-of-the-road approach is preferred, provide palliation and continue hand feeding as long as it is comfortable for the patient. Hand feeding will allow the father to taste food and be with caregivers at mealtimes, but his intake will be limited. If the daughter thinks that her father would want all interventions that may prolong his life, explain that observational studies have shown that tube feeding does not extend survival; it has no demonstrated benefits, is not associated with reduced aspiration, and has risks.15,16,23,24 Leading organizations recommend against tube feeding and advocate hand feeding.25–28