We frequently get asked questions about Death with Dignity or advance care planning for situations where dementia might be involved. Many individuals have concerns about confronting Alzheimer’s disease or other dementias in the future; others are in the midst of difficult and frightening situations when their family members are struggling with the disease.
The uncomfortable reality is there are no easy or clear cut answers. None of the three states with Death with Dignity laws allow individuals to participate who have dementia or Alzheimer’s disease advanced to the degree where judgment or decision-making is impaired. Those with early stage dementia without cognitive impairment do not qualify because they do not have a terminal diagnosis.
In the absence of expanded end-of-life care choices, advance care planning is essential. Two documents to consider: Health Care Directive (also called a Living Will) and a Durable Power of Attorney for Healthcare (most states allow you to combine these into one document). There are online versions available (MyDirectives), but the most prudent advance planning approach involves working with an attorney who is familiar with your state’s rules and regulations.
Another option available in many states is the POLST program. POLST stands for Physician’s Orders for Life-Sustaining Treatment, and it allows for your healthcare wishes to become a part of your medical chart. There are many benefits of participating in POLST programs, including: ease of access to your advance care documents, increased likelihood your healthcare wishes will be honored during an emergency, and portability (POLST forms can follow you from institution to institution).
One final option: an Alzheimer’s and Dementia Advance Directive developed in Washington State by Compassion & Choices of Washington, our colleagues in the Death with Dignity movement. Endorsed by the Western and Central Washington State Chapter of the Alzheimer’s Association, this document allows you to outline your preferences for care across many life dimensions including behavior management, personal and daily activities, and intimate relationships. While this document might not be deemed legal where you live, it can be a useful worksheet to explain your wishes to your children, family members, and friends.
While Alzheimer’s and other dementias are daunting diseases to face, advance planning may help provide a small amount of control to those who need it the most.
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