In the September 25, 2025, issue of the Journal of Law, Medicine and Ethics, there is a shocking article titled “New VSED Advance Directive: Improved Documentation to Avoid Late-Stage Dementia.” VSED means voluntary stopping of eating and drinking.

The authors state:

“People use advance directives to express preferences that direct their future care when they lack decision-making capacity. One form of advance directive, a “dementia directive,” records preferences about living in various stages of dementia. This is important because many Americans want to avoid living with advanced progressive dementia. Unfortunately, traditional advance directives cannot dependably achieve this goal. In contrast, some dementia directives can achieve this goal by directing cessation of manually assisted feeding and drinking. (Emphasis added)

We proceed in six stages. First, we review the prevalence of advanced dementia. Second, we identify the disadvantages of another option for accomplishing the goal of not living into advanced dementia, preemptive VSED. Third, we distinguish notable court cases where dementia directives were unsuccessful. Fourth, we review nine prominent dementia directives, noting how the Northwest Justice Project’s Advance Directive for VSED remedies those shortcomings. Fifth, we review this directive’s legal status. Sixth, we articulate its ethical justification.”

CONCLUSION

I have had a lot of experience caring for people with Alzheimer’s, both personally and professionally. I have written several blogs over the years, such as “Five Things my Mother (and Daughter) Taught Me about Caring for People with Dementia” (2016), Marketing Death and Alzheimer’s Disease (2019), and Alzheimer’s Association Ends Agreement with Compassion and Choices, Marketing Death and Alzheimer’s Disease (2023). In 1988, I wrote an op-ed published in the St. Louis Post-Dispatch titled “FEEDING IS NOT EXTRAORDINARY CARE– DECISION IN THE NANCY CRUZAN CASE ADDS TO THE LIST OF EXPENDABLE PEOPLE“

I remember when my mother was first diagnosed with Alzheimer’s and thyroid cancer. She needed a tracheostomy (a tube in her windpipe), but was able to eat by mouth.

I was shocked when one doctor asked if we wanted her fed, and I responded angrily, “She gets up and eats ice cream out of the refrigerator! Do you want me to tackle her?!”

Of course, I knew what he meant, but he got the message.

Eventually, my mother died peacefully in her sleep at a nursing home after enjoying a meal and laughter with the whole family. It was the kind of death she told me she wanted.

Unfortunately, my younger brother developed Alzheimer’s and diabetes and was critically injured in a fall down the stairs last October. I was able to calm him and carefully feed him.

The doctor recommended a feeding tube to ensure he was getting adequate nutrition, especially for his diabetes.

However, a palliative care team was called in and disagreed with the doctor, telling my sister-in-law that my brother was not going to get better anyway.

I explained to the family that a small feeding tube was available and comfortable, but the family rejected that option.

It took several long days for him to die.

No wonder assisted suicide is being considered for Alzheimer’s patients!