Last December, Compassion and Choices of Washington unveiled a new kind of advance directive for life planning while living with Alzheimer’s Disease and Dementia. This document is the first of its kind focused on these specific challenges. With a similar purpose as the living will, the Alzheimer’s and Dementia directive aims to have a person’s intentions known when the person isn’t in a place to speak for him or herself.
The Alzheimer’s directive is different from the usual advance health care directive. An advance health care directive is used to specify what medical actions should be undertaken if the patient is too ill or incapacitated to make those decisions. A typical question for those completing these documents is whether or not the patient wants aggressive medical treatment—such as a feeding tube or artificial ventilation—when the patient is dying or in a persistent vegetative state.
The Alzheimer’s directive doesn’t specify medical decisions, rather decisions which involve day-to-day choices. Robb Miller, executive director of Compassion and Choices of Washington, told me about the type of decisions covered by this new directive, “it’s more about the challenges of living with Alzheimer’s such as where are you going to live, how your care is going to be paid for, what to do with your pets, when to stop driving, what happens when you can no longer have intimate relations with your spouse or partner, those kinds of things, not medical issues.”
There were a number of factors which contributed to the creation of this directive. In 2003, Washington state enacted RCW 71.32, which allowed for the creation of Mental Health Advance Directives. This law inspired Seattle University School of Law Associate Professor Lisa Brodoff to think about a directive for Alzheimer’s and Dementia.
In 2010, Brodoff published a journal article in the Elder Law Journal entitled, “Planning For Alzheimer’s Disease with Mental Health Advance Directives”. Within the article, Brodoff describes the life changes that accompany the Alzheimer’s disease progression such as alterations to intimate relationships and the loss of driving abilities. She also described the practice of Medicaid divorces in which people divorce to protect assets due to incredibly expensive Alzheimer’s care. Brodoff concluded this article with a suggestion for a personal advance directive addressing these scenarios. Robb Miller read her article and was immediately interested in the specialized advance directive. Brodoff and Miller continued Brodoff’s work by coauthoring and creating this directive which is available to the public.
The directive provides opportunities for a person to state wishes about where he or she would like to be treated, who the preferred caregiver is, and who’s authorized to be a health care agent. The directive allows the patient to rank health care institutions in order of preference, and it even includes a space to discuss how one would like his/her pets to be cared for.
This Alzheimer’s directive can’t account for every care decision that’ll need to be made. To that end, Miller strongly suggests filling out a personal history and care values statement. This statement is a description of your history and values. In our conversation, Miller spoke about this process, “an important part of making the directive is expressing your religious beliefs or what’s really important to you so that people understand or at least have a sense of who you are.” This empowers caregivers to make better decisions based on more complete information and allows them to fill in the gaps when situations hadn’t been anticipated. Miller spoke of care being markedly better when caregivers had this added insight.
Another highlight of the Alzheimer’s and Dementia advance directive was the commitment to patient centered language. Even the instructions included the advice: “This is your document. When completed, it should express your wishes. Cross out sections, sentences, or words with which you don’t agree.” Miller and Brodoff created this directive to be empowering to those who’ve lost the ability to speak for themselves. Miller spoke about this approach: “One of the things this directive does so well is reinforce that the person making this document doesn’t want their wishes to be ignored, doesn’t want someone else’s judgment substituted for their own.”
No one can precisely predict the exact life changes that’ll occur during the course of a mental decline due to Alzheimer’s and Dementia. No one can predict the type of health care setting the person will need or exactly how quickly one will progress from the early stages of dementia to the late stages of incapacitation. Alzheimer’s disease presents a series of unknown questions, but this specialized advance directive combats this mystery. Miller summarized its usefulness, “there is just no downside to documenting your wishes. And there are many many downsides to being unprepared and not documenting your wishes… Making advanced directives whether it is medical directives or Alzheimer’s directives is a gift. It is a gift to your loved ones, it is gift to your caregivers, it is a gift to your family.”
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