Dementia Focused Advanced Directive

An Idaho Directive to Physicians (unfortunately labeled as a Living Will) allows you to specify what kind of life sustaining treatment should be administered or withheld if you are diagnosed with:

  1. I have an incurable or irreversible injury, disease, illness or condition, in which your death is imminent; or
  2. I have been diagnosed as being in a persistent vegetative state. The statute (Idaho Code 39-4502 (11)) defines "Persistent vegetative state" as an irreversible state that has been medically confirmed by a neurological specialist who is an expert in the examination of nonresponsive individuals in which the person has intact brain stem function but no higher cortical function and no awareness of self or environment.

An irreversible condition is a condition, injury or illness that may be treated, but is never cured or eliminated, leaves a person unable to care for or make decisions for himself, and is fatal without life sustaining treatment provided in accordance with the prevailing standard of care.

As our population ages, an increasing number of people will be afflicted with age-related diseases, such as Alzheimer’s and other forms of dementia. Although irreversible, those diagnosed with these diseases can live for prolonged periods of time with treatment.

Early in the disease, a good quality of life can be maintained, but as the disease progresses, those suffering with dementia lose their ability to recognize family members, become increasingly fearful and agitated, and lose the ability to take care of themselves.

If you are diagnosed with dementia, what type of treatment would you want? Would your wishes change as the disease progresses?

Dr. Barak Gaster, an internist at the University of Washington School of Medicine, believes that most advance directives are not well-suited for diseases that progress gradually because they do not adequately account for the fact that treatment wishes may change as the disease advances. So, he worked with others to create a dementia-specific advance directive that allows those diagnosed with the disease to better express their wishes. The Health Care Directive for Dementia (pdf) provides information about the symptoms of mild, moderate, and severe dementia, and allows individuals to specify their treatment goals depending on the course of their disease. For example, someone could specify that he would like to receive all available treatment to prolong his life, including being resuscitated if his heart stops beating, if his dementia is mild, but that all care to prolong his life should be discontinued when his dementia becomes severe.

The New York Times recently featured Dr. Gaster and one of his patients in an article titled: One Day Your Mind May Fade. At Least You’ll Have a Plan.