Are you concerned about someone who is dying slowly with dementia and might be suffering?

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1. My first and last name:

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2. Please answer these questions to determine WHEN the patient will qualify to implement Now Care Planning -- but keep this in mind: You and other surrogate decision-makers can complete this online program well ahead of the time when it will be implemented, to avoid the additional emotional stress of making these decisions and have these conversations when time is a critical factor; for example, an escalation of the patient's suffering.

Has the patient reached the stage of advanced dementia (or a similar terminal illness)?

Has the patient lost the ability to eat and drink independently so he or she depends on others to put food and fluid in his or her mouth (spoon-feeding)?

Are you certain, from your knowledge of the patient before he or she lost capacity, that if she had been asked about what he or she would want given her current condition, he or she would definitely have REFUSED ALL life-prolonging treatment now?

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3. My relationship with the patient living with advanced dementia is (click all that apply):

I am a family relative.

While not related, I am a loved one or close friend.

When she had capacity, the patient designated me as her proxy or agent to make healthcare decisions.

The patient's healthcare provider counselor contacted me.

Other relationship, or to clarify one above:

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4. To learn or to share more about how cruel and burdensome the advanced stage of dementia can be, consider this:
If one defines "terminal illness" as the disease that will most likely lead to death, then Advanced Dementia can also be among the longest terminal illnesses. Patients can survive much longer than those with brain cancer, for example.
In contrast to patients who remain stable a long time after a stroke or a traumatic brain injury, patients living with Advanced Dementia continue to decline in functioning. The progression of this disease causes increased personal suffering and burdens.

If you are not familiar Advanced Dementia (or you want a reminder), view this 14-minute video that includes material from several sources, including an award-winning PBS video (2009) entitled, "Alzheimer's Disease: Facing the Facts."
This composite excerpt video is entitled, "Living with Advanced Dementia--What is it really like?"
To view it, copy and paste this link in your browser:
https://youtu.be/jnZOLOliDwQ

I viewed this video today

I previously viewed this video

I do not want to view this video

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5. I used a checklist (or someone advised me) that the patient's living will is not clear or specific enough to adequately indicate WHEN he or she would want all life-sustaining treatment to cease.

Example: Her living will might cite the condition, "No longer able to recognize loved ones and family members."
But the patient and her loved ones can still enjoy spending time together and no one is suffering, let alone suffering severely.
If I used this simple criterion, the patient would die earlier than wanted because it would sacrifice a life that still could give and receive joy. Also, most physicians would refuse to comply for this reason.

The patient's living will is NOT adequate to know "WHEN."

The patient's living will IS adequate to know "WHEN."

I am not sure and I want to speak to a counseling health care provider (as I indicated below):

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6. I used a checklist (or someone advised me) the patient's living will does not offer an intervention that will be effective to allow her to die of her underlying disease.

Example: The patient's living will states, "Focus on Comfort Measures Only." But she has "No Plug to Pull" so sustaining her life does not depend on any high-tech treatment. Her treating physician argues that spoon-feeding is a comfort measure.

The patient's living will does NOT offer an effective "WHAT"/intervention for a peaceful, timely dying.

The patient's living will DOES offer an effective "WHAT"/intervention for a peaceful, timely dying.

I am not sure and I want to speak to a counseling health care provider in the way and at one of the times below:

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7. I feel qualified to serve as a surrogate decision-maker since I learned the patient's values and treatment preferences directly from him or her before the patient lost capacity.

Yes

I am not sure and I want to speak to a counseling health care provider in the way and at one of the times below:

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8. Below I have listed the names of ALL individuals I am aware of who might claim legal standing to make end-of-life decisions on behalf of the patient:

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9. Below I have listed the names of ALL individuals I am aware of whom I believe the patient would not want to have any influence in making end-of-life decision on her behalf.
(Write none, if applicable; and optionally, explain WHY.)

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10. DO you consent to serve as a member of the Patient Decision Committee? If so, this is Step 1.
Below, agree to Steps 2 to 5 by checking each numbered box:

Step 2: I will complete an online program to express my opinions based on my direct observations regarding the patient's past and current behavior during spoon-feeding.

Step 3: I will complete the My Way Cards online program to express my opinions about how the patient (when s/he had capacity) would have judged about 50 condition regarding if any would cause severe enough suffering for the patient to want to be allowed to die of his/her underlying disease.
I will substitute my thinking brain but BASE MY DECISIONS ON THE PATIENT'S VALUES to express my Substituted Judgment.

Step 4: I will participate in a discussion with other members of the Patient Decision Committee that the counseling healthcare provider will facilitate.
I and other members will learn if we have reached a Consensus of Substituted Judgment.

We will also learn if we agree with the treating physician if the patient has reached one or more of these specific such conditions.

Step 5: If I am the currently active proxy/agent or the selected (or added) surrogate decision-maker, I will attend a "shared decision-making" meeting with the treating physician. I will help present the data gathered from all members of the patient's Decision Committee, perhaps with help from our counseling healthcare provider and another surrogate decision-maker.

NO: I do NOT want to participate. (Optional: List the reasons in the box below, if you wish.)

I am not sure and I want to speak to a counseling health care provider in the way and at one of the times below:

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11. There are other issues I feel need to be discussed, including:
(Write none, if it applies.)

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12. Today's date

Date / Time

Date

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13. I have known the patient for ____ years:

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14. Please enter this information if you want a counselor to contact you regarding the patient about whom you are concerned:

City/Town

State/Province

ZIP/Postal Code

Email Address

Phone Number

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15. Do you want Dr Terman or a healthcare counselor to contact you about the person who is now dying slowly with dementia and might be suffering?

Yes and when I am ready, I will call or text Dr. Terman at: 760 704 7524

Yes and when I am ready, I will send an email to Dr.Terman@CaringAdvocates.org.

Yes I am ready now. I will continue with the next step of the Now Care Planning Protocol.

==> After I click the DONE button, the next online program SHOULD AUTOMATICALLY appear on my screen.
The link, which does NOT require a password, is:
https://www.surveymonkey.com/r/Relative-resist-spoon-feeding

If you want to send this online program to another person, this is the link:
https://www.surveymonkey.com/r/Now-Care-Planning-for-Dementia

Please call me at one of these times:

Are you concerned about someone who is dying slowly with dementia and might be suffering?

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1. My first and last name:

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3. My relationship with the patient living with advanced dementia is (click all that apply):

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7. I feel qualified to serve as a surrogate decision-maker since I learned the patient's values and treatment preferences directly from him or her before the patient lost capacity.

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8. Below I have listed the names of ALL individuals I am aware of who might claim legal standing to make end-of-life decisions on behalf of the patient:

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9. Below I have listed the names of ALL individuals I am aware of whom I believe the patient would not want to have any influence in making end-of-life decision on her behalf. (Write none, if applicable; and optionally, explain WHY.)

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10. DO you consent to serve as a member of the Patient Decision Committee? If so, this is Step 1. Below, agree to Steps 2 to 5 by checking each numbered box:

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11. There are other issues I feel need to be discussed, including:(Write none, if it applies.)

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12. Today's date

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13. I have known the patient for ____ years:

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14. Please enter this information if you want a counselor to contact you regarding the patient about whom you are concerned:

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15. Do you want Dr Terman or a healthcare counselor to contact you about the person who is now dying slowly with dementia and might be suffering?

9. Below I have listed the names of ALL individuals I am aware of whom I believe the patient would not want to have any influence in making end-of-life decision on her behalf.
(Write none, if applicable; and optionally, explain WHY.)

10. DO you consent to serve as a member of the Patient Decision Committee? If so, this is Step 1.
Below, agree to Steps 2 to 5 by checking each numbered box:

11. There are other issues I feel need to be discussed, including:
(Write none, if it applies.)