Making the Case for a Dementia Directive
*Originally published in the Indiana Lawyer*
Dementia and Alzheimer’s have had the spotlight in recent news coverage with the announcement of results from a clinical trial on Lecanemab, a treatment hoping to reduce cognitive decline in early-stage Alzheimer’s patients. More than 55 million people are living with dementia worldwide, and that number continues to grow, with 10 million people receiving a diagnosis every year.
This disease has a profound impact on families – physically, psychologically, socially and economically. We have walked side by side with families from the moment of diagnosis until end of life, and have witnessed the devastation it brings to caregivers, even when they have help. After watching someone progress with this disease, it is natural to worry about the “what-ifs” should you also develop signs of dementia. With clients expressing concerns on the type of healthcare they wish to receive in case of a severe dementia diagnosis, we as a law firm decided to find resources and tools our clients and their families could use to be better prepared when faced with dementia-related diseases.
What are Common Advance Directives?
Advance directives are legal documents that allow your clients to state decisions on end-of-life care ahead of time. That way, in the event of incapacitation, family, friends and healthcare professionals know their wishes, helping to avoid confusion or disagreement between parties. There are several healthcare documents, such as a Living Will declaration or the Indiana POST form that are signed by a patient and their physicians to dictate the care a person would like to receive in case of incapacitation. However, none of the advance directives currently used in Indiana address receiving care with a severe dementia diagnosis.
Creating a Dementia Directive
Some states, such as New York and Washington, recognize dementia directives that dictate the care a person receives in the event their dementia reaches a severe or advanced stage. These directives declare the client’s wish regarding receiving nutrition or hydration in the event the client is unable to communicate, feed themselves, or recognize their loved ones. Private organizations also provide example Dementia Directives, which give options for care in a case of dementia. Some of these directives are also called Voluntary Stop Eating and Drinking (VSED) Documents.
Rather than leaving any questions unanswered, it is important to be as detailed as possible regarding when certain types of care are wanted and when the client wishes to decline care even if they are not able to say so in their state of dementia. It becomes very difficult in situations where the advanced dementia patient has chosen to decline nutrition and hydration, but in their state of dementia they do not remember they have made that declaration and are seeking food and water from their health care provider. The potential for conflict is obvious in this situation and therefore any dementia directive needs to be as detailed as possible.
Although comprehensive, there should still be room in the dementia directive to allow for change. For example, there may be scientific developments in the treatment of Dementia and Alzheimer's, potentially resulting in court challenges to the directive. Therefore, the document should contain provisions on whether a client wishes to receive care if there are advancements in treatment. For example, Biogen Inc. and Eisai Co. partnered to create an experimental drug Lecanemab, which has shown efficacy in slowing the spread of dementia and is subject to regulatory approval. Due to this recent finding and more in the future, it will be important to stay informed on this field of study and to bring these conversations to your clients. While all planning documents should be reviewed on a regular basis, a dementia directive is especially organic given current medical advancements in the area.
Concerns Regarding the Dementia Directive
The creation of a dementia directive, however, raises concerns that need to be discussed with your clients. For example, courts may not honor the provisions of these documents, and some courts have ruled that a willingness to eat is a change of mind – even in an advanced dementia patient. A person may state that they do not wish to receive food or water, but courts have held that if a patient opens their mouth to receive food, it is a change of mind. This line of reasoning is problematic because someone with severe dementia may lack capacity to change their mind. We have clients who, when told there is a possibility a court would not honor their wish, are extremely distraught because they are certain that they do not want to be forced to endure advanced dementia for themselves and their loved ones.
Another issue is that physicians and healthcare providers may not honor such agreements due to fear of liability. There’s the possibility of a homicide charge, since not providing food and water to an individual is essentially ‘killing’ them and consent is not a defense to murder. There also may be moral opposition on the part of the healthcare provider, or an argument that providing food and water is not healthcare at all.
It is important to ensure that family members and loved ones are well-informed of a client’s decision to execute a dementia directive, especially their designated health care representatives. It may be necessary to have their healthcare representatives as witnesses in the creation and execution of these documents, and letters and videos addressed to family members, friends and healthcare representatives will ensure that people are aware of the client’s wishes and would not challenge their decisions later. Conversations with healthcare providers will also be necessary, and including these wishes in reference to dementia in their Indiana POST document would be useful, too.
Lisa Dillman is an attorney at Applegate & Dillman Elder Law. The firm specializes in elder law and Life Care Planning, a holistic approach to deal with legal, financial, medical and emotional issues involved in growing older. The firm has offices in Indianapolis, Carmel and Zionsville.