By Robb Miller, Executive Director Emeritus End-of-Life Washington
Many people are unaware of new options to avoid advanced dementia caused by Alzheimer’s disease or other medical conditions. These options, which focus on hastening death by limiting or stopping oral eating and drinking, include (1) voluntarily stopping eating and drinking (VSED), (2) VSED as a bridge to medical aid-in-dying (MAID), (3) minimal comfort feeding (MCF), and (4) VSED via a new, improved advance directive.
Options Available Before the Loss of Decision-Making Capacity
Some people diagnosed with progressive dementia wish to end their lives before they lose decision-making capacity. This approach offers the advantage of remaining in control, not becoming dependent on others for basic care, and not relying on someone else to make decisions on their behalf that may conflict with their wishes. The major disadvantage is having to “jump the gun”–giving up potentially good days or months to avoid an unacceptable future of prolonged advanced dementia. “Before” options include (1) VSED and (2) VSED as a bridge to MAID.
VSED is legal in every state and, unlike MAID, doesn’t require a terminal diagnosis, prognosis of less than six months to live, and physician approval. It does, however, require people to have the capacity and determination to see it through the 8 to 14 days it could take; caregivers who are willing to assist; and the support of medical and palliative (comfort) care providers such as hospice. Fortunately, clinical guidelines published in the Journal of Pain and Symptom Management are now available to help medical providers support their patients who choose VSED.
VSED as a bridge to MAID may enable a person with dementia to shorten the normal VSED dying process by being deemed terminally ill within days of starting VSED and thereby qualifying for MAID. This approach is not possible in states with MAID statutes that have longer required waiting periods. Additionally, finding medical providers to enable this option can be challenging. However, some people have successfully used this approach.
Options for After the Loss of Decision-Making Capacity
Nearly everyone with progressive dementia will lose the ability to eat and drink without assistance from a caregiver and become totally dependent on their caregivers for food and fluids. This provides people with an opportunity to reduce or even stop eating and drinking.
For those who choose not to end their lives while they still have capacity, two new options to significantly shorten living with advanced dementia are now provided by (1) minimal comfort feeding and (2) VSED via a new, improved advance directive.
Minimal Comfort Feeding (MCF) is a relatively new concept. Comfort Feeding Only (CFO), which is well known and commonly practiced for patients in severe dementia, can prolong life for months or even years. But with MCF a person is fed less: only what is necessary to avoid discomfort. While more research about MCF is needed, early evidence indicates that MCF sustains life for only a few weeks.
While numerous advance directives to decline all oral feeding and drinking have been published, until recently they all suffered from shortcomings that made what is often seen as a controversial approach more difficult to implement. Fortunately, a new VSED Advance Directive (created by the National VSED Advance Directive Committee and offered by the Northwest Justice Project) addresses these weaknesses and allows for more choice at the end of life.
MCF and VSED by advance directive can be challenging for caregivers and long-term care providers who often believe that they’re required to continue more intensive comfort feeding. However, loss of interest in eating and drinking is part of the natural dying process of progressive dementia. Over time and with experience, these options should become more honored in the same way that living wills have been.
[This article was created by the National Voluntary Stopping Eating and Drinking Advance Directive Committee. For more information, contact Robb Miller, Executive Director Emeritus, of End-of-Life Washington, at robbmaxmiller@gmail.com.]