Introduction and Overview

Introduction: Patients who reach the advanced stage of dementia will have lost the capacity to express themselves in words. Yet sometimes, they can still nonverbally indicate their current desires.

Overview: The questions below focus on your observations of the patient’s behavior as caregivers put food and fluid in the patient’s mouth. Your observations may have led to your opinion: Does the patient want assistance of hand-feeding and hand-hydrating to continue? 

“Sometimes” means resistance is often enough for you to think the patient does not want this assistance to continue.

Answer based on your observations both NOW and in the PAST 6 months. Why?
Because some patients may feel resistant now, but have lost the ability to show their resistance since their dementia progressed, but did show resistance in the past. (There is another possibility: They may have changed their mind, if they can still make such decisions.)

If the patient is resistant, your observations (along with those of others) may help motivate people who know the patient to participate in the Protocol, "Now Care Planning," and motivate a physician to write orders to honor what you and others believe the patient would now want.

Important Caveat: In many jurisdictions, although physicians may not know the law, a patient cannot legally refuse life-sustaining treatment unless he or she has capacity (is competent) to make that decision.

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* 1. Your name?

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* 2. Did you complete the online program,
Are you concerned about someone who has dementia, is dying slowly, and might be suffering?

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* 3. The patient sometimes refuses to cooperate with hand-feeding and hand-hydrating. Recently?

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* 4. The patient sometimes refused to cooperate with hand-feeding and hand-hydrating. In the past six months?

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* 5. The patient sometimes turns his/her head away when someone attempts to assist hand-feeding and hand-hydrating, even though nothing distracted them. Recently?

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* 6. The patient sometimes turned his/her head away when someone attempted to assist hand-feeding and hand-hydrating, even though nothing distracted them. In the past six months?

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* 7. The patient sometimes tightens his/her lips or jaw when someone attempts to assist hand-feeding and hand-hydrating. Recently?

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* 8. The patient sometimes tightened his/her lips or jaw when someone attempted to assist hand-feeding and hand-hydrating. In the past six months?

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* 9. The patient sometimes either spits out food that someone has put into his/her mouth, or “pockets” the food by leaving food in his/her mouth instead of swallowing. Recently?

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* 10. The patient sometimes either spit out food that someone had put into his/her mouth, or “pocketed” the food by leaving food in his/her mouth instead of swallowing. In the past six months?

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* 11. The patient opens his/her mouth only after someone taps a few times on his/her lips or chin, which behavior could be a primitive reflex. Recently?

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* 12. The patient opened his/her mouth only after someone tapped a few times on his/her lips or chin, which behavior could have been a primitive reflex. In the past six months?

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* 13. The patient does not seem to enjoy being hand-fed and hand-hydrated. Recently?

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* 14. The patient rarely seemed to enjoy being hand-fed and hand-hydrated. In the past six months?

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* 15. The patient exhibits other behaviors during hand-feeding and hand-hydrating. Recently?
(If none, please write in "none.")

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* 16. The patient exhibited other behaviors during hand-feeding and hand-hydrating. In the past six months?
(If none, please write in "none.")

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* 17. Based on my recent and past direct observations of the patient receiving assistance with hand-feeding and hand-hydrating, the following statement most closely represents my opinion for that past or present: The patient...

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* 18. Today's date

Date / Time

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* 19. My relationship to the patient

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* 20. I  have observed the patient eating or being fed for _____ years:

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* 21. Please enter this information if not entered previously:

0 of 21 answered
 

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