Many Americans are aware of the fact that advanced dementia, including Alzheimer’s disease is the sixth leading cause of death in the US. Two-thirds of Americans, however, have not assigned someone to speak for them and represent their wishes if and when there is a day they are no longer able to speak for themselves. A new movement led by End of Life Choices New York is pressing for greater choice in whether patients with dementia want to receive assisted feeding at the end of their lives. The organization is working towards a goal of helping individuals and families find as much comfort as possible at the end of their lives.
In order to help people and families with dementia or with a history of dementia, End of Life Choices New York has created their own advanced directive – the Advance Directive for Receiving Oral Food and Fluids in the Event of Dementia. This document has two purposes: to allow individuals to document their wishes about when to stop assisted feeding, and to ensure appointed health-care agents can implement those wishes. The form includes two options regarding assisted feeding: all assisted feeding should be stopped, or feeding will take place based on comfort. The latter choice involves feeding the patient only when they are receptive; opening their mouth for food, or other such gestures. Individuals may choose one of the available options, but not both. The overall aim of the document is to provide comfort for patients and their families. According to Dr. Anne Kenny, “90 percent of families want comfort care at the end of life. Only ten percent would opt for longevity. […] The second-best gift you can give your family is showing them the path you want to follow so they don’t have to choose it for you.”
The instructions for completing the directive are outlined by Dr. Judith Schwartz, the clinical director of the End of Life Choices organization. She advises individuals to make choices regarding their end of life care well in advance, “especially if they want to avoid prolonged dying that causes undue suffering for themselves and their loved ones”, writes Jane Brody. The document must be filled out when the individual is cognitively sound, and the document must valid under state law.
Several health-care professionals are encouraging the use of this new document, including Dr. Timothy Quill, a professor of medicine in the Palliative Care Division of the University of Rochester School of Medicine. He says, “… if the directive leads to families and caregivers erring on the side of comfort and dignity for the patient, it’s a real step forward. It encourages them to follow the guidance of the patient’s ‘now’ self, not the past self.” This advance directive document and its background can be found here.