How it works:
Step 1 uses the online patient decision aid, My Way Cards. Each card describes one of about 50 conditions by words that are easy to understand and a line drawing. Together, these conditions strive to comprehensively reflect what people dread most about being forced to endure a prolonged dying in advanced dementia and other terminal illnesses. Describing conditions behaviorally makes diagnosis is less important than loss of function or unwanted behaviors. Example: A person can completely lose the ability to respond to others due to advanced dementia, total paralysis due to ALS, strokes, or severe brain trauma. Most planning principals care more about losing function and severe suffering than their specific diagnosis. (People who want to live as long as possible—regardless of suffering—can also use this patient decision aid.)
Use your computer, tablet, or cellphone to complete Step 1. Note: Real, printed (non–virtual) cards that can be spread out on a table are available but infrequently used today.
Make an “advance treatment decision” one condition at a time, by answering one question:
“In your judgment, will this condition—by itself—cause severe enough suffering for you to want Natural Dying?”
If your answer is, “No, not enough suffering,” then others will continue the default option, Feed and Treat and your physician will order treatment to try to keep you alive as long as possible.
If your answer is “Yes, suffering from this condition would be severe enough,” then future physicians and others can allow you to die of your underlying disease by implementing Natural Dying (defined below). Natural Dying can be clinically effective—even if you have “No Plug to Pull”; that is, if sustaining your life does not depend on receiving any high–tech medical treatment since the only treatment you need is spoon–feeding.
The criterion of severe suffering is more compelling than the criteria traditional living wills use to answer the “When Question.” Some examples are: reaching a sub–stage of disease is arbitrary; inferring if your feeding behavior is resistant is prone to misinterpretation; applying the “Principle of Proportionality” is laudable, but vague; and judging your “Quality of Life” is very low or you now live in a state of “Indignity” could begin a dangerous slippery slope that could lead to granting some people authority to judge if the lives of others are worth living.
Natural Dying also strives to be widely acceptable by resisting the intent to hasten dying. The intervention withdraws assistance by another’s hand with hand–feeding and hand–hydrating, but it never withholds food and fluid. Instead, it includes this physician order, “Always place food and fluid in front of the patient and within his or her reach.” Fact: Natural Dying can be effective in practice only if those in authority accept it. Thus, it strives to be clinically appropriate, legal, ethical, moral, and consistent with the teachings of major religions.
For those who do not continue other Steps at this time, this can be their “CURRENT” living will.
Educates you what it can be like, for you and your loved ones, to live with advanced dementia and other terminal illnesses—both by the cards and the optional online videos.
Facilitates your making a clear and specific advance treatment decision for each condition. Lets you express “what” intervention you want “when,” where timing is based on your values.
Memorializes your requests so future physician(s) and others will know what you want.
Reduces your proxies/agents’ emotional burden by making their primary role to serve as your advocate so others honor the treatment decisions that you previously made yourself. (Traditional advance directives primarily empower proxies/agents to make current treatment decisions on behalf of the incapacitated patient using their “Substituted Judgment.”)
Why this step is unique:
To our knowledge, the Natural Dying Living Will asks for your judgments about more conditions (50) than any other living will (typically, less than 6).
No other living will insists on “severe enough suffering” as the sole criterion for “When?” and broadens the concept of suffering to include: physical pain and suffering; emotional or psychic suffering; existential suffering (loss of meaning in life, fear of dying); disruption of one’s life narrative; and not being able to spare loved ones various types of suffering. Together, these areas of suffering are what people dread most about prolonged dying in advanced dementia.
No other living will offers a way for physicians to answer the “When Question” so they do not need to assess your current suffering. To determine if “that time” has come, physicians only need to answer this key question: “Have you, my patient, met the clinical criteria of at least one condition that you previously judged would cause severe enough suffering?”