Will Doctors Honor My Advance Directive for Dementia?

There is no guarantee that doctors or the legal system will honor any advance directive, especially one that addresses dementia. A Dementia Directive is intended to document your wishes and preferences for life with dementia and to assist the healthcare team and loved ones in making decisions that align with what you want. To be valid, it must be completed while you have decision-making capacity, so that might be in advance of a diagnosis or early in the disease process. People choose to fill out a dementia directive because loss of decision making capacity is something they are concerned about. 

However, because the dementia directive is made well in advance of you actually experiencing severe cognitive decline, issues can arise that make it difficult to implement what the directive says. Nevertheless, there are some strategies that can help ensure that a dementia directive is honored when health care decisions must be made. 

Specificity Is Key

If you are completing an advance directive to prevent certain medical interventions should you develop advanced dementia, start with the assumption that there will be challenges to its validity. Thus far, none of the standardized directives that address these kinds of issues for people with dementia have been reviewed in a court of law, and the organizations that created them (e.g., Compassion & Choices, End of Life Choices of New York) freely admit that there is no way to ensure that those with the power to do so (doctors, administrators or the courts) will comply with your wishes. In fact, the courts have historically been extremely reluctant to allow physicians to stop interventions such as assisted feedings, and some families who have tried to do so have been threatened with charges of elder abuse. 

Although no directive is foolproof, one way to try to preemptively overcome the challenges to your advance directive is to be very specific in your instructions and the conditions under which they should be carried out. A court in the Netherlands refused to honor a woman’s instructions to stop assisted feeding because her directive did not specify “oral” feedings, so a judge made a determination that she only wanted to avoid being fed by a tube. Even some standardized tools are similarly ambiguous.

Similarly, many advance directives fail to specify what conditions must be met for the directive to go into effect. Vague statements such as “I am very ill and unlikely to recover” leave too much room for interpretation and can easily be ignored. It is far better to identify specific scenarios (e.g., “I no longer recognize my loved ones;” or “I am agitated and upset most of the time and my caregivers can’t help me to calm down”). The Dementia Values and Priorities Tool created by Compassion & Choices is a very good example of the kind of specific behaviors and conditions your advance directive should address. 

With that being said, there are currently no laws in any state that fully protect a person’s right to determine their own destiny in advance of developing dementia. And, as experts point out, it is unlikely that such laws will be enacted anytime soon. The ethical and moral question of when a person’s suffering is “bad enough” to warrant withholding certain medical treatments is extremely individual and will likely always be a matter of debate. 

Nonetheless, if you are concerned about dementia and would like to try to make your wishes known in advance, make sure your advance directive is clear and specific and– most importantly — that your healthcare team and surrogate decision makers are aware of what you do and do not want. 

Sources 

“Dementia Values and Priorities Tool”. Compassion & Choices. https://compassionandchoices.org/dementia-values-tool/