What is a “dementia directive” to stop eating and drinking?


By Judith Schwarz, PhD

Text stating End of Life Options Conversations with Judy eolcny.medium.com. Image of Judy on blue and black background.
This article is part of the End of Life Options: Conversations with Judy series — to learn more about the series, click here.

What is a “dementia directive” to stop eating and drinking?

A “dementia directive” is also referred to as an Advance Directive to Stop Eating & Drinking (AD to SED).

It is now well known that an adult with decision-making capacity has the right to decide to forgo all life prolonging measures including oral intake with the intended goal of hastening death. Individuals may choose to do so because they are terminally ill or suffering from an incurable and progressive disease. What is important is that the person is able to make a thoughtful and well-informed decision about the benefits and burdens of limiting oral intake and has a clinical partner and support from family, friends and/or caregivers.

But what if someone wants to direct their future care for if/when they lose decision-making capacity? Individuals who are concerned about how they will be treated once they lose decision-making capacity (particularly whether handfeeding occurs) are well advised to prepare for that possibility while they retain capacity. Artificial nutrition and hydration involves providing nutrition and fluids via a feeding tube, or less commonly through a vein. When participating in advance care planning, many individuals describe and document their wishes regarding receiving artificial nutrition and hydration. However, wishes regarding handfeeding are often unconsidered and undocumented.

Those with dementia will reach a point in disease progression when they lose the ability to feed themselves. At this point, if a spoon touches the side of the mouth the mouth will reflexively open, and handfeeding can occur. Individuals with dementia can live for months or even years if continuously hand-fed. Some individuals would not want their life prolonged at this stage; however, without proper written or video-taped documentation of their hand-feeding wishes, hospices and caregivers may be unable to cease hand-feeding, even if the family requests this. Judicial review of such cases often results in a determination that handfeeding must be continued in the absence of clear and specific directives that detail limitations to oral feeding.

Therefore, ensuring advance directives are in place, and that they contain the necessary information is critical. In addition to appointing a health care agent with whom they have discussed the circumstances when they would want all life prolonging measures stopped, including oral feedings, a written directive that described hand-feeding wishes should also be completed. Such a directive ought to include the clinical circumstances when feeding limitations are to be imposed, and how to manage any associated symptoms of distress.

At the very least, the directive ought to indicate that the feeding limitations would be implemented when decisional capacity is lost along with the ability to feed oneself an adequate amount of food and fluid necessary to sustain life. In addition to receiving comfort-focused symptom management, the directive might indicate that ALL oral feeding is to be stopped, or that ‘comfort-focused’ feeding occurs. Comfort-focused feeding includes providing the least amount of oral intake necessary to relieve feelings of a dry mouth or throat while increasing the provision of medications to relieve any suffering. In addition to completing a written directive that limits the provision of future hand feeding, individuals are encouraged to make a video recording of their values, wishes, and reasons for limiting future life-prolonging measures including oral intake. These videos provide significant support for future caregivers who may not have known the patient while capacitated.

It is strongly recommended that persons who have completed an advance directive to stop eating and drinking (AD to SED) and have met the triggering clinical precursors (e.g., loss of capacity and the ability to self-feed), be enrolled in hospice care so their needs for comfort care are effectively met.

New Yorkers have the right to decide their future care through advance directives in case they one day lose capacity. By completing an AD to SED they can ensure their future treatment wishes will also be honored. Most hospice programs will be reassured by a written AD to SED — particularly when accompanied by a video recording made when the patient retained capacity.

End of Life Choices New York’s AD to SED/Dementia Directive can be downloaded here.

Judith Schwarz is a PhD prepared nurse, and has provided End of Life Counseling for 20 years for adults with living incurable/progressive or terminal illnesses. As the Clinical Director of End of Life Choices New York (EOLCNY), she answers New Yorkers’ questions about a range of end of life issues.

To learn more about EOLCNY’s support program, click here. To connect with Judy, please email judith@eolcny.org.



End of Life Choices New York

EOLCNY provides advocacy, education, counseling, and support to expand end of life options and improve end of life care for New Yorkers.