What is included in the Dementia Directive?

We wanted our directive to clearly indicate when the option to limit oral intake should be imposed; by whom; and how much to limit oral feedings. The form includes two options for limiting handfeeding once decision-making capacity is permanently lost. Option A includes the refusal of all life-prolonging measures, including CPR and all nutrition and hydration (including handfeeding) – even if the person’s mouth continues to reflexively open in response to touch. This option requests comfort care and symptom management with palliative or hospice care once feedings stop.

Option B similarly refuses life-prolonging measures include CPR and artificial nutrition and hydration, but permits oral feeding that is comfort-focused. In this case, handfeeding may be provided only while the patient continues to show enjoyment or positive anticipation, and only include foods that they seem to enjoy. If they begin to cough or choke, or are no longer interested in eating, then feeding should cease. As is the case with Option A, Option B also notes that comfort measures and medications with palliative or hospice care should be provided once feedings cease (if not already being provided). In addition to completing the form, we also recommend recording a video explaining the reasons, values, and wishes for care as further proof that this is truly reflective of your wishes.

As previously noted, the form takes effect once the individual loses the ability to make their own health care decisions, and to self-feed.  The health care agent, in consultation with the person’s primary care provider(s), must agree that the patient is at an “advanced” stage of dementia. If the patient is still able to eat on their own, then they should continue to be allowed to do so. However, once they are no longer able to feed themselves, then the previously chosen option to limit oral feedings is implemented.