Which Living Will do you want, and WHY?

We all naturally strive to make decisions that maximize our pleasure and minimize our pain. To do this, you need reliable information. Yet there has never been a report to consumers that compares various ways to plan for the last chapter of your life. Advance Care Planning begins with selecting a Living Will you will then complete. These forms began to be used about 40 years ago. Today, most forms provide you choices about what treatments you DO, or do NOT want based on possible future conditions. Completed forms can legally express your end-of-life wishes—if treatment decisions must be made when you are too ill to speak for yourself. It is ironic that some of the most significant treatment decisions you will ever face are likely to be made after you have lost the mental capacity to make those decisions, yourself.

That is why having a Living Will is important. But this question remains: Which one?

Where can you learn which Living Will is best for you? We did not know any resource from which you can learn how to select a Living Will based on your personal values and your particular goals. Yet there are huge variations among Living Will forms. Ideally, the best one for you will reflect your values and be effective to attain your goals when “that time comes.”

This survey will collect information from two kinds of “Subjects”:
(A) Health care professionals (called “experts” since they already know a lot about Living Wills); and,
(B) Consumers/patients/users of Living Wills (the rest of us).

The goal of the research team is to better understand how people select Living Wills and to learn if they need further information or education to select Living Wills that seem “appropriate” for them by being consistent with their values and goals.

We are not aware of any risks associated with completing this survey except this possibility: You might have anxiety due to thinking about issues you might find unpleasant. If you think the subject matter of this survey might upset you, do not participate.

Participating in this survey requires you to take two steps.
First, read the Living Wills (or excerpts). They are in the PDF form you can download or be sent by email.
Second, respond to the questions in the survey.
Note: while we prefer you complete the survey, you can stop reading or stop responding at anytime.

Completing this survey is intended to directly benefit you, although that is possible.
After you have finished the survey, if you decide you want to use the complete version of any one or two of these Living Wills in your own Advance Care Planning, ask us and we will send it to you. We can do this in a way that keeps your identity anonymous and your responses confidential. We can similarly inform you about the results of our survey research.

Regarding how much time it may take to complete this survey. While the survey itself it not very long (about 20 minutes), you must first read the Living Wills (or excerpts), which could take another 20 minutes. This time may be well spent for this reason: If it helps others (and perhaps you) select the right Living Will, then it may reduce how long and how much they (or you) suffer before dying. Dying can be painful for days to weeks for some patients, and the advanced stage of dementia can last a few to several years for others. So your investment of time might yield a “good return.”

Thank you for your time and effort to contribute to this survey research.

Read this .pdf before completing the survey: Eleven (11) Living Will excerpts

Link:  Click for Survey

Will you take the "Encourage Living Will Survey"?

What is this “ENCOURAGE Living Will Survey Research” all about?

A peaceful and timely dying...
While NOT most people's favorite topic, when stated as a goal…
this is what most people want for the last chapter of their lives.
What do they NOT want? A prolonged dying with suffering. They also do NOT want a premature dying.

This survey’s “nickname” is “ENCOURAGE” because it asks:
“Will you be ENCOURAGED to complete a Living Will?
And will you ENCOURAGE your loved ones and close friends to complete Living Wills?”
Why complete Living Wills? To feel confident that others will honor the end of life wishes you expressed... so you can attain a peaceful and timely dying.

Our goal is to reduce the suffering of millions of terminally ill patients and their family members as much as possible, especially if they face the huge challenges of Advanced Dementia.
When you hit the “DONE” button, you will be directed to a web page where you can ENTER your email address so you can be sent a “Secret Code”; that way, your responses can be anonymous.

This is the link: Click for Survey (This will take about 10-minutes.)

The “Dementia Fear”:
What do you already KNOW about it?
How would you PLAN for it?

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.

This survey covers these topics:

• What is the “Dementia Fear”?
• Who has this fear? (Could you have it, someday?)
• What are the possible consequences of this fear if you do NOT plan ahead?

This survey has two parts:

Part ONE begins each question with: “Did you already KNOW?
Additionally, Part ONE presents the information it asks about. It also defines the “Dementia Fear."

Part TWO presents the relevant information you need to know, and then asks you...
either to express your opinion about this information, or to answer this question:
Now that you DO KNOW, What ACTIONS would you take, to PLAN ahead for the Dementia Fear?"

Click for Survey (Much greater depth: about 60 minutes.)

Attitudes of Professionals Regarding the "Dementia Fear"

What is the research about?

Our research focuses on honoring patients’ (or clients’) wishes to attain a dying that is both peaceful and timely.
"Timely" means neither prolonged nor premature.
Results from this survey may provide us a better understanding about the attitudes of healthcare professionals who are asked to respond to patients' (or clients') requests regarding certain end of life options, as the clients try to reduce their own suffering and the suffering of their loved ones if someday they are terminally ill and especially if they must face the challenges of Advanced Dementia.

This survey presents information that some healthcare professionals have found new or worthwhile to review.

The issues include the clinical, legal, ethical, religious, and moral implications of decisions regarding life sustaining treatment.

Why are you being asked to volunteer in this research study?

We want to learn the attitudes of healthcare professionals regarding patients' (or clients') treatment requests or treatment refusals made in advance, if they were to reach the advanced stage of dementia in the future.

Preliminary results from a companion survey completed by patients and clients revealed that some preferred certain options for specific end o f life conditions that are considered controversial. . . yet others did not realize other options existed so they could avoid prolonged dying in any way other than to hasten their own dying.

Who is conducting this research?

Arnold P. Gass, MD, Carole Hair, PhD, RN, GNPBC, and Stanley A. Terman, PhD, MD.
You may speak to an investigator if you have any questions: Call 800 647 3223, or email

What will you be asked to do?

To complete an online survey that takes about an hour and a half.
Your participation is completely voluntary and may not directly benefit you or your patients/clients.
If you wish to stop participating in the study at any time, there will be no negative consequences.
You will not be compensated for your time nor will you have any out-of-pocket expenses.
Your responses will be confidential and not connected to any personal identifying information you may choose to reveal.

Click for Survey(About 90 minutes.)

Experts' opinions about TEN Living Wills

Dear Healthcare Professional,

May we explain why it is so important for you to contribute to this survey?

Because our work may lead to the first guide ever designed to help people select a Living Will from the many available so it is consistent with their particular values and beliefs and that can be effective to fulfill their specific end o life goals.

Historical background:
Years ago, when Living Wills were introduced, lawmakers tended to be conservative.
They restricted the use of these legal forms to refuse future clinical treatment to two groups of patients:

A) Patients who were “almost dead in time" (were terminally ill); and
B) Patients who were “almost dead in function" (were in a permanent coma or permanent vegetative state).

Patients in the advanced stage of dementia suffer from a progressive but slow terminal illness that devastates the functioning of their brains...but they do NOT fall into either Category A or B, above.

Even today, most Living Wills still do NOT describe the condition of Advanced Dementia.
Nor do they present relevant treatment options as standard choices for people to consider as they complete Advance Care Planning.

Some people want their future decision-makers to decide to provide treatment so they can live as long as possible.
Some people want to avoid a prolonged dying with suffering after they reach the stage of Advanced Dementia.

But everyone must face this reality:

The dementia epidemic will continue to escalate. In 2010, 32% of people over 65 died with dementia.
By 2050, the projected percentage will be 43% and there will be three times as many dementia patients.

Given the long course of its symptoms and burdens, becoming “stuck” in Advanced Dementia has now become older people's greatest fear. Some people fear, the opposite that others will hasten their dying despite their wishes, that may be based on the teachings of their religion.

Five factors make completing effective Advance Care Planning for dementia compelling:
1. By midcentury, an estimated 16 million Americans will have dementia;
2. The advanced stage often lasts from 3 to 15 years;
3. The emotional, physical, and financial burdens to patients and others may become overwhelming;
4. Advance Dementia patients have a significant but unrecognized risk: their chronic pain may be undertreated or not treated at all; and,
5. Economic pressure may lead to policy changes that threaten the wishes of those who wish to make treatment decisions consistent with their values or religion.

There is thus a compelling need to help people select Living Wills for specific goals. Unfortunately, we are aware of NO source of information designed to guide people regarding which Living Will is most appropriate for their individual values and goals or which is most likely to be effective to communicate their treatment preferences to future treating physicians to attain their goals.

This study will gather the opinions of health care professionals about 10 Living Will excerpts regarding whether or not they are likely to be effective to attain people's values and goals if they reach the advanced stage of dementia.

This is our definition of “effective”:

A Living Will is effective if it...
describes the condition of advanced dementia well enough so the physician can precisely time WHEN the patient would want his or her wishes implemented; and, presents a choice of treatment options so patients can choose WHAT treatment they prefer, to fulfill their values and goals.

A Living Will is thus effective if future physicians can read it to learn...

WHAT treatment the patient would have wanted,

WHEN the patient would have wanted it.

Why is this is so important?

Because if a person happens to complete a Living Will that is ineffective or is designed for people who have different values and goals, then the form is NOT likely to reflect the patients' authentic end of life wishes or successfully lead to fulfilling his or her goals.

What can we do now, in our present state, where there is so little available information about Living Wills?

As we begin the process of Advance Care Planning, we can review the form and ask two key questions:

i. Does the Living Will provide a clear and specific description of the condition of the progressive disease, Advanced Dementia?
ii. Does the Living Will present a choice of treatment options that can be effective for people's different sets of values and goals?

So... health care professional,
We need your expert opinion so we are asking you to respond to this survey about 10 Living Wills that represent a spectrum of goals, structures, and underlying values. (Please read these excerpts in the PDF file you received.)

Then respond to this survey when it asks you:
Does the Living Will appear (on its face) to be "effective" for patients who reach the advanced stage of dementia?

First the survey will ask for your opinion if the Living Will can likely serve as an effective guide to answer the WHEN question; that is, WHEN to implement patients' wishes.

Then the survey will ask for your opinion if the Living Will can likely serve as an effective way to implement WHAT treatment patients would or would not want, for two different sets of patient values
and goals.

Link:  Click for Survey

I am very impressed with what Dr. Terman has been doing at both a practical and theoretical level (an outstanding mix of the two) to improve the lives and control of people with dementia.

Dr. Tony Hope, founder and Director, Oxford University's Ethox Centre; leader of Nuffield Council's report, "Dementia: Ethical Issues"