Last weekend, I presented at the Positive Aging Fair, and my PR Director, Renee, staffed our expo booth. Renee told me and Jeannie about another booth at the expo that was particularly memorable, because the representative brought an oven and was baking cookies on-site. Upon speaking with him, Renee said that he does the same thing at the memory care unit where he works, because it jogs the memory of those with dementia and reminds them to eat.
This seemed like a great idea to Renee, who has several family members with dementia, but couldn’t even fathom her loved ones forgetting to eat. It certainly happens, though. And, sometimes, when it does, the patient is spoon-fed by staff. This could be a helpful way to give a person with dementia the nutrition he or she needs to stay alive. However, what if the person didn’t want to be fed at all, and he or she couldn’t communicate that?
Let’s take, for instance, Nora Harris, a librarian and scholar in Oregon who was diagnosed with early-onset Alzheimer’s at age 56. Nora had no desire to be kept alive with measures to prolong her life, including artificial nutrition and hydration. She even drafted an advance directive to that effect.
Nora’s husband, Bill, contended that his wife’s Advance Medical Directive document covered oral assisted feeding, too. To comply with his understanding of her wishes, he actually went to court last year to try to force staff at the center to stop spoon-feeding Nora, saying the practice violated his wife’s wishes and her legal documents. According to Bill, “Nora never wanted to live like this.”
Bill took the matter to court to do what he could to make sure his wife’s wishes were respected. However, a local judge sided with the state’s long-term care ombudsman who said that state rules to prevent abuse required the center to offer residents three meals each day and provide help eating, if needed. So the facility where Nora resided kept spoon-feeding her, even as Nora’s kidneys failed and she became bed-bound. Bill fought for eight years for his wife’s wishes to be followed, but was ultimately unsuccessful.
The Right to VSED
Nora Harris, who passed away a couple weeks ago, has turned into a central character in the ongoing debate over advance directives and dementia, and voluntary stopping eating and drinking (VSED). The issue at the center of the controversy is whether patients with dementia and other progressive diseases can stipulate in advance that they want oral food and liquid stopped at a certain point, hastening death through dehydration. The other issue is whether people who still have mental capacity can refuse food and water, usually resulting in death within two weeks.
These are some of the issues that affect whether or not VSED is ethical and legal:
- Is it torturous or peaceful? Advocates for VSED contend that, with proper medical support, it can result in a peaceful death that allows patients control over their own fate. Critics say the practice amounts to torture and that it will lead to starvation of elderly, disabled, and mentally ill people.
- What if people still open their mouths to accept nourishment? Unlike medical aid-in-dying, VSED doesn’t require a law or a doctor’s approval. The legal and ethical question remains about those who open their mouths to accept food and fluids, as Nora Harris did until her last days. Even though research shows that feeding somebody with end-stage dementia will not prolong their life, if a patient accepts food and swallows it, should it be incumbent on caregivers to feed him or her?
- Are the laws clear? Nearly two dozen states have laws that address assisted feeding, including many that specifically prohibit withdrawing oral food and fluids. Other states address only artificial feeding or are unclear or silent on the issue
- What if it’s stated clearly in a person’s Advance Medical Directive document that they desire VSED? Right now, only one state — Idaho — appears to sanction withdrawal of assisted feeding by a health care proxy “in accordance with a valid directive,” according to a July analysis compiled by Charles Sabatino of the American Bar Association. However, with more than 5.5 million people living with dementia in the U.S., requests about stopping assisted feeding are becoming more common, and the issue has been given more attention. It will be interesting to see how the laws change regarding honoring advanced wishes for VSED!
Putting VSED wishes in you Advance Medical Directives
Advance medical directives that tell caregivers to continue or withdraw artificial nutrition and hydration provided through feeding tubes or IV lines are common. However, most don’t mention assisted oral feeding. This is something new that the Farr Law Firm is incorporating into its advance medical directives; it may not be enforceable under current law, but you can still make your wishes known for the future in the event the laws change, since this is a rapidly evolving area of the law.
What if you want to indicate in your advance directive what should happen with regard to spoon feeding if you have Alzheimer’s? Do you want to be spoon-fed if that is the only way you can eat or drink? The only way to ensure that your incapacity and estate plan truly reflects who you are, what you care about, and what you have today is to have your documents reviewed and updated as needed. The Farr Law Firm’s Lifetime Protection Program ensures that your documents are reviewed and updated annually, so that they will always reflect your current wishes and be up to date with the ever-changing laws.
If you are a member of our Lifetime Protection Program, please don’t hesitate to call us for a no-cost update to your advance directive if you want to add language about spoon feeding, or you can wait until your annual renewal to make the change. If you’re not yet a client and you don’t have an advance medical directive, call us to schedule an initial consultation:
Fairfax Elder Law: 703-691-1888
Fredericksburg Elder Law: 540-479-1435
Rockville Elder Law: 301-519-8041
DC Elder Law: 202-587-2797
About Evan H Farr, CELA, CAP
