By 2050, as the American population becomes increasingly more aged, the number of Americans diagnosed with Alzheimer’s disease and other dementias is expected to double from its current rate, according to a report by the Alzheimer’s Association. This would bring the total number of Americans diagnosed with some form of dementia to a projected 13.8 million.
In the last five years, doctors such as Dr. Barak Gaster created and released a dementia directive template. Similar to a standard advance medical directive, which specifies the kind of care you would like to receive in the event of a terminal illness, a dementia directive is intended to address what kind of care you would want in the event of a dementia diagnosis, often progressing through each stage, as well as end of life wishes.
Why is This Directive Controversial?
Advance directives for medical and mental health issues are common documents in estate planning in many states. However, the controversy around a dementia directive is less about the care items you would want to have in place and more about how this directive could run into legal problems with existing state and federal laws surrounding end of life care as well as perceived moral problems.
A story by Kaiser Health News (KHN) in January 2020 reports on this exact scenario. To summarize the article very briefly, Susan Saran was diagnosed with frontotemporal dementia and created a dementia directive in consultation with her lawyer as part of her overall estate planning, and her directive included instructions to withhold assisted feeding at the end of life. She then decided to move to a retirement community in New York. The retirement community, after she had moved in and submitted her planning documents, said they could not do what she had asked. According to the article, “…the center is required by state and federal law to offer regular daily meals, with feeding assistance if necessary. There’s no provision … for ‘decisions to refuse food and water.'”
The controversy in the article focuses on what’s known as VSED, or voluntarily stopping eating and drinking. Many who are against the practice claim that it is wrong to withhold food or water from a person with advanced dementia if the patient has asked for either. But what defines asking for food and water is in and of itself a quandary – in some cases, the person responds automatically, without conscious awareness or intent to accept the food or water, simply because it is a familiar, automatic action when food is held to the mouth. This can then be considered a desire by the patient to accept food.
In addition, the dementia directive and VSED may run into legal roadblocks with state and federal laws, as Susan Saran found. A medical directive often addresses terminal conditions, such as a vegetative state or advanced disease in which the patient is no longer conscious or otherwise capable of making a decision on their own behalf, or in which their quality of life would greatly suffer by their life being prolonged with assisted feeding. We already have provisions for those scenarios in place in the form of a medical advance directive. This directive may not inherently cover dementia; hence the desire for a dementia directive. Many people object to withdrawal of assisted feeding or other life-prolonging measures on moral, ethical, religious, or right-to-life bases when the patient is diagnosed with dementia without an accompanying terminal illness.
The Dementia Directive in Maryland
The Maryland Department of Health and Mental Hygiene offers an advance directive on mental health treatment. According to their sample documents and accompanying explanations, in Maryland, advance Alzheimer’s disease could be considered an end-stage condition, and thus is addressed by the advance directive for life-sustaining procedures. However, dementia is not the same thing as Alzheimer’s disease, and is not explicitly included in the sample documents.
Generally speaking, dementia should be included under end-stage illnesses. By the very nature of dementia, all dementia is progressive, meaning that the patient will decline over time and lose the capacity to make decisions on their own behalf. This paragraph from a 2008 Johns Hopkins study summarizes this:
“Since 1993, the Maryland Health Care Decisions Act has contained template forms for ADs that allow an individual to name a health care agent (HCA) and to list treatment preferences for 3 conditions: terminal illness, persistent vegetative state and end-stage illness (Annotated Code of Maryland). The Act defines end-stage illness as “an advanced, progressive, irreversible condition caused by injury, disease, or illness: (1) that has caused severe and permanent deterioration indicated by incompetency and complete physical dependency; and (2) for which, to a reasonable degree of medical certainty, treatment of the irreversible condition would be medically ineffective.” Other means of expressing treatment preferences, such as the Five Wishes form (Aging with Dignity, 2005) are available on the internet and provide alternative means for conveying to caregivers and potential decision-makers what one would want done or not done in certain end-of-life scenarios.” [1]
The problem seems to be in carrying out the wishes that the patient made when they were fully competent, especially when those wishes include withdrawal of assisted feeding in a caregiving facility.
What Can You Do?
So what can you do to ensure your wishes are followed for end-of-life care? Make sure your desires are documented with estate planning in advance directives. Make sure your family or caregivers are aware of and understand what you want to have happen in one or more end-of-life scenarios. Choose people that will not hesitate to advocate for you, if at all possible. And start the planning process early. No one likes to think about this, but it’s better to be prepared and have all your estate planning ready for when you need it.
If you find yourself in a situation like what has been described above, consult a qualified lawyer. Ask questions and craft solutions that fit your needs whenever possible.
[1] Article link: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2849144/ . Patrick Triplett, Johns Hopkins University School of Medicine Department of Psychiatry Johns Hopkins Hospital Meyer 279 600 North Wolfe Street Baltimore, MD 21287 Phone: 410-502-2649; [email protected]elpirtp;.