On October 15, Seattle-based Worry-Free Wednesdays (WFW) sponsored a Seattle Town Hall panel discussion centered on the end-of-life options dementia patients have to sustain their quality of life. WFW is an end-of-life planning, education, and awareness organization helmed by the capable and energetic Wendy Norman, who moderated the October event. Speakers included attorneys Erin Mae Glass and Lisa Brodoff, both members of the National VSED Advance Directive Committee that recently completed work on a directive that allows individuals to document their wishes about receiving food or drink from caregivers. VRNW’s Kate Christie, author of The VSED Handbook, also spoke about her family’s experience with VSED.
The event was held in the Mehdi Reading Room, with an audience of 55. Wendy Norman kicked off the panel with a discussion of the progression of dementia, the kinds of quality-of-life decisions patients are faced with after diagnosis, the impact of mental capacity on end-of-life decisions, and the steps an informed patient can take to protect their wishes after being diagnosed with Alzheimer’s or another form of dementia. Some end-of-life options open to dementia sufferers are VSED or physician-assisted suicide at the Dignitas clinic in Switzerland, both of which are available to patients in the early to middle stages of their cognitive decline. Once dementia has progressed to the later stages, a patient can choose to specify comfort-feeding only (CFO) in their advanced directives, so that their life is not prolonged by others once they can no longer feed themselves.
Lisa Brodoff, professor emerita at Seattle University’s School of Law, spoke next and went into more detail about the document she authored for people diagnosed with dementia, the Living with Dementia Mental Health Advance Directive currently available from End-of-Life Washington. This planning tool is used nationally by people with dementia—and their families—who want to plan critical decisions regarding medical care and other personal wishes in the face of cognitive decline. Lisa emphasized the importance of early planning and preparation while still having the capacity to make medical and legal decisions for yourself, as well as having a friend or family member willing to advocate for you when you are no longer able to do so.
VRNW’s own Kate Christie spoke next, sharing the story of her parents’ decisions to stop eating and drinking in the middle stages of dementia. She highlighted the reasons her parents chose VSED and the challenge of determining “the right time.” For her mother, whose Alzheimer’s disease left her physical body mostly intact, the decision-making process was agonizing and led to a significant family fracture. For her father, who was diagnosed with Lewy Body dementia three years after his wife’s death, choosing when to stop eating and drinking was easier. Not only had he and the family already been through VSED with Kate’s mom, but her dad’s disease progression involved a severe decline in physical and mental capabilities that impacted his quality of life significantly. In both cases, Kate supported her family member’s decision to end their life rather than go into a memory care facility.
Following Kate’s portion of the presentation, Erin Mae Glass, a family and estate planning attorney, discussed legal issues around choosing and carrying out VSED for those who are diagnosed with Alzheimer’s or another form of dementia. She also talked about the evolution of the new Advance Directive for Voluntary Stopping Eating and Drinking from the Northwest Justice Project and the National VSED Advance Directive Committee. This directive allows someone in the early to middle stages of dementia to instruct family members and caregivers to stop providing food and water if and when they can no longer make their own decisions or eat or drink without assistance, or to choose comfort-feeding only (CFO) for their future self.
Following the presentation, the panel answered a variety of thoughtful questions from audience members. One member approached Wendy at the end of the event to share her gratitude for the information and reassurance shared that evening. As someone in the early stages of dementia, she said that VSED and CFO were “treasures” she was not aware of, and that she had felt more relief in the ninety minutes of the presentation than she’d felt in the year since diagnosis.
As Kate likes to say, sometimes just knowing you have choice and control in the face of a devastating diagnosis like dementia can make all the difference in your quality of life as you confront what it is to live with—and eventually die from—that disease.