Completing this survey may provide you useful and helpful information--even though our main purpose is to find out what people like you ALREADY KNOW and what ACTIONS they would be WILLING TO TAKE--once they are adequately informed.

Living in the stage of Advanced Dementia can be very challenging for both patients and their families.

While the survey focuses on the challenges of Advanced Dementia, you may learn a lot by responding to its questions. This information also applies to planning ahead for ANY terminal illness.

The purpose of this survey is to learn the attitudes of clinicians, attorneys, and pastoral counselors regarding specific end-of-life treatment options that some patients may consider important for several stages of dementia and acute neurological injuries, but which others may consider controversial. Completing this survey will help further this goal: To honor patients' (or clients') wishes to attain a dying that is both peaceful and timely; that is, neither prolonged nor premature.

Take this survey if you want to consider the main goals of Advance Care Planning: to reduce end-of-life pain and suffering and to avoid lingering for a long time in Advanced Dementia. First, read the story of "Edward" (which also can apply to "Edith") where pain and suffering is both emotional and physical due to dementia and cancer. Then consider the options regarding your end-of-life preferences. You can even print out your answers to guide your future decision-makers.

Excerpt of the story, which totals about 1300 words:

"For the last year, he has not been able to recognize anyone, including his daughter. He cannot recall any significant event of his life. He cannot express any wish or feeling using words or gestures. He requires total care for feeding, bathing, eating, and for bowel and urinary incontinence.... A few weeks ago, Edward started screeching loudly. For hours, he calls out, "Mommy! Daddy!" His face is twisted with a fearful grimace and his whole body is agitated as he shakes both fists. The shouting continues until he becomes exhausted. Then he sleeps awhile, but when he wakes up, his horror resumes. Two days ago, Edward struck out and hit his daughter Julie as she approached him with a warm soapy sponge-a caring way to clean him that had previously been routine and seemed a source of enjoyment..."

This challenging event leads Julie to a series of discussions with Edward's physician. The plan they decide on leads to Edward's peaceful transition.

Confused about such terms as "Brain Dead", Coma, PVS (Permanent Vegetative State), and the Minimally Conscious State? Do you know what you would want for yourself or your loved ones in such states?

Test your knowledge as you learn about the functional abilities and potential for recovery of patients who suffer from several severe brain states. Receive instant feedback so you can compare your answers with those of professionals who deal with end-of-life challenges.

Express your opinions about treatment options that already exist, or could exist if laws were to change... for yourself, for someone you love, and for our entire society. The results of this survey will reveal if there is a consensus about what treatment people want if they are informed about the biologic and social aspects of existence in Devastating Brain States.

Is it ever moral to hasten dying? Perhaps it is more appropriate to ask, Is it ever humane to insist on prolonging the natural process of dying? Can we trust others to judge our situation and make the right decision when our time comes? Might some decision-makers be biased? If we cannot trust others, should we consider a more objective clinical standard embodied in new laws? What are the risks of such a radical change in the way our society views such patients?

Your opinion is important! Your answers, along with those of others, are part of a national poll. We hope its results will stimulate discussion about how our society deals with the challenges of advanced stages of Alzheimer's dementia and related diseases.

Your personal answers to this survey's questions can be part of your way to let others know what you want for yourself if someday, you cannot speak for yourself. You can select certain pages to print and attach them to your other Advance Directive documents. (To print, use landscape orientation)

The way we die is a subject that will affect us all. Yet, knowledge about how peaceful various ways are is currently scarce. This survey asks those who have direct or professional experience with dying people to rate various ways of dying on a scale whose end points are "causes extreme pain and suffering" and "is totally comfortable and peaceful."

Results from this survey may help many people exercise choice to make a significant difference in the last chapter of their lives and even beyond (as experienced by surviving loved ones). A practical example: "If the last chapter of my life is marked by difficulty breathing and swallowing so that I risk contracting pneumonia by breathing in food or liquid, can I choose a different way to die that is likely to be more peaceful?"

This survey began in a table-top, analogue form. It will soon be available in digital format for wider distribution.

For people who are now, or will in the future suffer from cancer with extreme pain and suffering, or from Alzheimer's disease and their last years will be associated with no ability to interact with others as they linger in a state of total dependency and indignity (as they define it) only to die from another medical event that may cause additional suffering.