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Do you know what it is like to live with Advanced Dementia?

Can you answer, "At what point do you want to stop receiving life-sustaining treatments if they will only prolong your dying and they might increase your pain and suffering?" The items on My Way Cards provide a glimpse of how Advanced Dementia may affect you and others. If you suffer from this devastating disease someday, by then it will be too late to tell others what you want... Sorting My Way Cards can provide your future decision-makers with your Known Wishes about your preferences based on your personalized criteria of Advanced Dementia or other terminal illness. Advance Directives that use specific clinical diagnoses and definite medical interventions risk different interpretations and thus prolonged arguing, the result of which can be To Delay is To Deny. To avoid giving future "experts" any issues to argue about, My Way Cards use NO clinical diagnoses. Instead, cards have words that strive for clear and convincing descriptions of choices you may want. Similarly, the intervention requested, Natural Dying, unambiguously and simply requests all the Comfort Care you may require, while withholding all life-sustaining treatments including all food and fluid by any route.

Sort My Way Cards to Create Your Living Will and an endorsement by Joseph Barmakian, M.D., and CEO of the U.S. Living Will Registry International callers: If you have Skype, or if you'd like to, click this button to call On-Phone Assistance. If you have a Skype phone, you can dial directly: +990009369991446675 On-Phone Assistance ...is ready when you are. When to listen: Some people listen to these informative messages just as they are about to select one of the four My Choice Cards (A, B, C or D) during their first sorting. Others prefer to listen between the first and second time they sort, to have time to think about the consequences of each selection. How to connect and select: There are four ways to listen to "On-Phone Assistance." A) If you can dial the US number, it is 1-206-388-5109. B) International callers can use SKYPE from their computer (which is free). Our number is so long we provide a button (above or below) for you to click. TIP: You need a "Dial Pad" to make numerical selections. A "Dial Pad" will appear in the upper right-hand corner if you click on the phone number that was automatically dialed in the upper left-hand corner. C) You can use a local access phone number at local rates, to make an international call. Click here to find your local phone number. First dial it; then dial 1-206-388-5109. (Example: in Sydney, Australia, the first number is +61 280148200) Or, if you live in one of the following countries, you can dial direct at local rates with the following numbers: UK Direct: +442071933288 Australia Direct: +61280113055 D) To listen to the audio MP3s on your computer, click any numbered selection below. (Note to Caring Advocates Planning Professionals: Select a connection method that is suitable for your clients.) What does Advanced Dementia look like? (#1); What do we mean by Natural Dying? (#2); What does stopping Manual Assistance with Oral Feeding looks like, at the bedside? (#3); How do I choose a My Choice Card that is RIGHT for me? Listen to more information on Choice... A (#4); B (#5); C (#6); and D (#7). Skype: Highly recommended: Click here to view a 2-minute video that Angelo Volandes, MD, and colleagues used in several research studies to study decision-making about what kind of care (Aggressive Care versus Comfort Care) people will choose for themselves--if they reach the stage of Advanced Dementia. (Reference: Volandes AE et al. Video decision support tool for advance care planning in dementia: randomised controlled trial. BMJ 2009;338:b2159.)

Submit your personal data from a MyWayCards wallet card Brochure Fax-A-Friend Getting Started Directions for Use Why we need My Way Cards "My Way Cards--Living Will" Criteria Overview How to Order My Way Cards Why sort twice? How to rearrange cards. Professionals, click here Where do you start, for a peaceful transition Powerpoint presentation: The effectiveness of sorting MyWayCards

Brochure for My Way Cards
Note that this information is available for download.

To create an effective Living Will, sort My Way Cards

Most of us, when we think of Advanced Dementia, do NOT want to a prolonged process of dying, with its burdens to ourselves and others. We'd prefer to avoid its symptoms, losses of function, unwanted behaviors, and conflicts with life-long values. But can we answer this:

"At what precise point do I want to stop receiving all life-sustaining treatments-if they will just prolong my dying and are likely to increase my pain and suffering?"

The problem: Advanced Dementia is irreversible and progressive: it cannot be cured and it will certainly get worse. In the moderate stage of dementia, however, many patients still enjoy some aspects of their lives. So how can your future decision-makers and your loved ones be sure that the time has come to Permit Natural Dying-to withhold all life-sustaining treatments including all food and fluid by all routes, while they still provide you with ALL the Comfort Care you need?

The solution: Each My Way Card describes a single item by a few simple words and a cartoon-like illustration. Sort them to indicate your preferences for your future decision-makers to use as a GUIDE to determine WHEN to Permit Natural Dying. Sorting My Way Cards also lets you choose just how strongly you want future decision-makers to honor your current instructions versus to consider other future factors.

The challenge: If a health care provider or an institution opposes honoring your wish to refuse manual assistance to eat and to drink, you may be forced to endure a prolonged dying. Your loved ones may face a long, difficult legal conflict. To prevent challenges where "To Delay is To Deny," you must provide solid evidence that will meet the consistent, clear and convincing standard in civil courts. Sorting My Way Cards can help your future decision-makers prove that you willingly, voluntarily, diligently, and competently expressed your Known Wishes in terms of the precise condition for which you do, or do not, want specific treatment. Even the strictest court should honor your wishes... quickly!

Recommendations: To memorialize your diligent and competent selection of preferences, create an audio- or video-recording of your comments as, or right after you sort the cards: with your loved ones, your proxy/agent, or a planning professional. Follow the instructions to create your wallet card; then send a copy or a FAX or upload it to Caring Advocates to create your My Way Cards-Living Will. Sign this form in front of two qualified witnesses or a notary. (Note: Patients in early dementia usually need a formal psychiatric evaluation to prove they possessed the mental capacity to make end-of-life treatment decisions.)

Next steps: Discuss your choices on the My Way Cards-Living Will with your loved ones, proxies, and physician. Complete an Advance Directive to Permit Natural Dying, which lets you empower either your proxy and/or your physician to decide WHEN to Permit Natural Dying. It also allows you to list individuals whom you wish to disqualify as future decision-makers. Ask a physician to sign your Physician's Orders to Permit Natural Dying for future implementation. This form lets you give your signed consent for Palliative Sedation-if you would prefer to be unconscious rather than to experience unbearable end-of-life pain and suffering if all other means of treatment cannot provide relief. Each proxy and you can also sign a Patient/Proxy Contract of Agreement. This will enhance your proxy's legal standing. To alert Emergency First Responders that you do NOT want CPR, or any IV or oral hydration, you may wish to order jewelry that you will someday wear. The Medallion for Natural Dying can prevent inadvertent sabotage of your plan for a Peaceful Transition. Finally, you can upload all your forms to a national registry so that authorized people can access them by FAX or Internet, when needed.

For any disease: Sorting My Way Cards allows you to indicate WHEN to Permit Natural Dying for any illness-if pain and suffering are unbearable, or if medical treatment becomes non-beneficial ("futile").

Other uses: You may also wish to sort My Way Cards . . .

1. After you are sure about your preferences, use two decks of My Way Cards to sort with each proxy/agent-to be confident that he or she understands exactly what you will want someday.
2. If a member of your family is now suffering from Advanced Dementia but left no clear prior instructions, those people who are close and concerned can simultaneously sort a deck of My Way Cards. The results can be anonymously tallied to strive for a consensus of opinion regarding what the patient would have wanted-based on the most likely way s/he would have applied his/her life values, or based on what seems to be in his/her best interest. A professional facilitator may provide needed help when making difficult decisions.

More Information: A 21-minute video explains how to sort My Way Cards. View it for free at www.MyWayCards.org. (Video DVDs are also available.) This site has other information and a way to purchase cards through Caring Advocates, a non-profit organization whose mission is to help people decide what their end-of-life wishes are, and to facilitate fulfilling their wishes. The site www.CaringAdvocates.org offers lectures, articles, surveys, and the videos, "Fasting: A Legal Peaceful Way to Avoid a Prolonged Dying," and, "At the Bedside of a Peaceful Transition." Some levels of Caring Advocates' memberships include books. Peaceful Transitions: A Successful, Compassionate Strategy for Life's Final Challenge (2009) has explanations and stories about each component of the "ironclad strategy." The BEST WAY to Say Goodbye: A Legal Peaceful Choice at the End of Life (2007) considers fasting as a way to avoid a prolonged process of dying from every standpoint-clinical, emotional, relational, legal, moral, ethical, religious, and political. BEST WAY explains five significant advantages of fasting from all food & fluid over Physician-Assisted Dying (Suicide): 1) Fasting is legal everywhere; 2) No physician permission is required; 3) Fasting works for physically incapacitated patients; 4) Patients often have several days to change their minds; 5) The process allows time to exchange healing goodbyes.

Ethical and moral perspective: It is ironic that a clear and convincing description about WHEN to Permit Natural Dying not only can prevent a prolonged process of dying with its accompanying pain and suffering and other burdens; it also can prevent a premature dying. Caring Advocates' mission is a "WHEN to die" where the timing is neither prolonged nor premature, and a "HOW to die" where the dying experience will be as peaceful as possible for both patients and families.

By mid-Century, the U.S. will be overwhelmed with the financial burden to care for 5 million patients with Advanced Dementia that some may state we no longer can afford. But can we imagine letting someone die just for lack of funds? Yet we must respond to a person's expressed choices for which particular symptoms, losses of function, unwanted behaviors, and conflicts with life-long values of Advanced Dementia they do not want to endure. Our obligation to Permit Natural Dying is not only kind and compassionate; it is totally consistent with medicine's oldest principle: FIRST, DO NO HARM.

For more information, or to order one or more decks of cards: call us, send us an email, or visit us at www.MyWayCards.org.
Stanley A. Terman, Ph.D., M.D.
www.CaringAdvocates.org

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www.PeacefulTransitions.com

Getting Started with My Way Cards

Let's assume you are competent and have a primary care physician (even if s/he is rather busy).

1. View the 21-minute video on My Way Cards on www.MyWayCards.org. Consider also reading other material on that web site. If this sounds like it might be a good plan...
2. Ask your primary care physician to send you his/her standard form to consent to release confidential medical information. If you sign it, you will be giving your permission for a professional from Caring Advocates to call your physician and explain how s/he can complete Advance Care Planning in an efficient and effective way. It is best to do this ahead of time. You can always revoke this permission if you change your mind.
3. Sort the My Way Cards to create your Wallet Card. Usually this takes less than a half-hour.
4. Send the numbers on your Wallet Card to Caring Advocates by following the instructions in the cards. (They will explain your options: you can copy and send, fax, or upload to our secure site.)
5. Caring Advocates will send back your My Way Cards-Living Will and other Advance Care Planning documents that are relevant for your State.
6. Consider completing the Advance Directive to Permit Natural Dying (AD-PND) by answering, "Yes," to its question, "Did you express your specific wishes for Advanced Dementia by creating a My Way Cards-Living Will?" If you decide to use the AD-PND, attach your My Way Cards-Living Will.
7. Sign your AD-PND in front of two qualified witnesses or a notary.
8. Read over the Physician's Orders to Permit Natural Dying (PO-PND) and decide if you want its four orders to be implemented someday in the future by your physician and/or agent/proxy.
9. If so... make an appointment with your primary care physician and bring him/her the AD-PND and the Physician's Orders to Permit Natural Dying, and your My Way Cards-Living Will. (You might mention that your physician can probably be reimbursed for his/her time by using the billing code, V65.49, "Other specified counseling," as long as this activity took more than half of your office visit.)
10. After your physician signs the Physician's Orders to Permit Natural Dying, follow the "Next Steps" card in the deck of My Way Cards (or the guidelines in the book, Peaceful Transitions: A Successful, Compassionate Strategy for Life's Final Challenge.) Examples: you may wish to add a Proxy Directive that works in your State for other instructions, a Patient/Proxy Contract of Agreement to enhance the "ironclad strategy," order a Medallion for Natural Dying to emergency first responders will know what to do and what not do (but do NOT wear it until "that time comes"), and upload all your Advance Care Planning Documents to a national registry so that authorized people call retrieve them expediently, when needed to make critical decisions-which registration (for life) is included with the purchase of a Basic Membership in Caring Advocates for $20, plus a fee of $20 annually thereafter.
11. You can email or call us at Caring Advocates for guidance along the way: DrTerman@CaringAdvocates.org, or 800 64 PEACE (647 3223)

Why We Need “My Way Cards”

My attorney colleagues taught me something of great value: A single signature at the end of a long and complicated document could be challenged on this basis: lack of evidence that the person who signed really understood all the fine points in this long and complicated document. While the Criteria of Advanced Dementia to Consider Natural Dying was subjected to the review of several professional colleagues, in its compact form (on page 52), someone could in the future, challenge the process of decisionmaking on a similar basis, if the then-competent person merely responded “No” to the question, “Do you want to modify these criteria?”—This is the legal reason why I developed My Way Cards.

The clinical reason why I developed the My Way Cards was that it was rare that anyone modified the Criteria of Advanced Dementia to Consider Natural Dying. At first, I hoped people were comforted by these words on the Advance Directive to Permit Natural Dying: “to use as a guide.” But as a psychiatrist, I was worried: the list is obviously not pleasant so it is likely that people would rather not consider each item for a long time. Moreover, they might be overwhelmed by reading all these diverse manifestations of Advanced Dementia on a single sheet of paper. And they were really diverse: symptoms like apathy and difficulty swallowing; behaviors such as agitation and incontinence; functional losses like being unable to recognize loved ones or communicate; and conflicts with life-long values such as being a financial and caregiving burden to one’s family while not being able to appreciate any benefit from living.

A list with boxes to check seemed too small an improvement. People might still feel overwhelmed if asked to make three dozen “Yes” or “No” decisions (on three sheets of paper).  Then I considered Dr. Elizabeth Menkin’s Go Wish Cards, whose goal is to facilitate discussions about end-of-life desires. Her cards ask you to first select the wishes you consider “very important,” then to choose the “ten wishes that mean the most,” and finally to rank those ten in order. However several wish-cards seem universal, like “Not dying alone” and “To be kept clean.” Most of the cards assumed the patient would NOT die suffering from dementia. (Examples: “To remember personal accomplishments,” and “To have someone who will listen to me,” and “To be able to talk about what death means.”) Moreover, the cards did NOT seem designed to help guide future decisionmakers. These two wishes, for example—“To be free of pain” and “To be mentally aware”—were NOT considered as being in direct conflict with each other if future decisionmakers must someday give consent for Palliative Sedation.

Guiding future decisionmakers is the primary goal of My Way Cards. During Advance Care Planning, a competent person sorts the cards into two stacks: the “YES” stack will include the symptoms, behaviors, functional losses and conflicts in life-long values they DO want their future decisionmakers to consider as they determine WHEN to Permit Natural Dying. The “NOT” stack includes those items they do NOT want considered. (It is fine if some cards are not used for either stack.) To make the messages on the cards both easier to appreciate and more impactful, each card has an illustration or photograph on its back. (See example on next page.)

As a final step, the person diligently reviews each “YES” card as s/he asks the question, does this card—by itself—warrant consideration that it might be time to Permit Natural Dying? If the answer is “Yes,” the person circles the number of this card on the My Way Cards—Results form. (The official name for this group of circled items was By Themselves Cards, but now we refer to them as My Checkout List.) The form, My Way Cards—Results, can be notarized or witnessed so it can be attached and become part of, an Advance Directive.

Solitaire: Play My Way Cards by yourself, “to figure out what is important to you and why”—especially since the characteristics of Advanced Dementia are so variable and people such have different preferences. One card has the disclaimer that sorting cards is “no substitute for obtaining good professional advice.” Ideally, you should sort cards as you consult with a physician or Planning Professional so you have the opportunity to ask questions and to explain why you made certain choices. If you record this interview on audio or video, it can help prove that you were competent as you diligently considered your end-of-life choices.

To make sure your proxy understands: Once you know what you want, you can “play” My Way Cards with each of your proxies, to make sure they understand your end-of-life wishes. You and each proxy can sort the cards into “Yes” stacks; then you can both select My Checkout List cards. Finally, you can compare your results and discuss any discrepancies.

For patients who left no prior instructions for loved ones whose loved ones are being asked to consent (or refuse to consent) to potential life-sustaining treatment: Several concerned relatives, including siblings and adult children, can all sort the cards based on what they feel the patient would want in his/her current condition. They can submit their cards anonymously, which might be more honest since no one relative would need to take the “blame” for being the ultimate tie-breaker who determined to Permit Natural Dying now.

How you use My Way Cards is up to you. You could just write this note: “I did diligently review and I agree with all the Criteria of Advanced Dementia to Consider Natural Dying.” But if you, like many people, are worried about enduring a prolonged dying with dementia, sort the cards by yourself, ask your physician or Planning Professional to record your conversation about why you made these choices, and then sort the cards with each of your proxies.


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Criteria of Advanced Dementia to Consider Natural Dying

These criteria can guide your future decision-makers if you suffer from an irreversible, progressive dementia, ineffective, "futile" medical treatment, or unbearable pain and suffering. These symptoms, unwanted behaviors, losses of function, and conflicts in long-term values are grouped according to theme. Most people prefer to think about one item at a time as they engage in Advance Care Planning. Sorting My Way Cards lets you inform your future decision-makers what to consider in the future, if you want them to decide WHEN to Permit Natural Dying. For more information, read Peaceful Transitions: A Successful, Compassionate Strategy for Life's Final Challenge.

1. About myself: I cannot recall or appreciate the important past events of my life. I cannot recall my life-long values. I am not self-aware. I do not respond to my name;

2. Expressing my wishes to increase my pleasure and decrease my pain: I cannot communicate any wishes by using words or gestures. I cannot make sounds or gestures to consistently indicate “Yes” or “No.” I cannot make or carry out a plan to fulfill my desires. I have no concept of my future. I cannot state if anything is bothering me so I risk suffering from untreated pain that others do not recognize;

3. Relating to others: I cannot recognize family members or cherished friends. I seem puzzled or I am wrong in identifying them. I utter no words or sounds, nor do I make any gestures, as they enter and leave my presence. I do not express any feelings of love or affection towards them. I am not able to pray to, or relate to, a Supreme Being (if I believe in One);

4. Dependency and Dignity: I am totally dependent on others for basic care. I cannot bathe myself. I cannot dress myself. I cannot feed myself. I am incontinent of urine and/or feces. My behavior no longer reflects my life-long values so I have lost my “dignity” (as I would have previously defined it); 

5. My mood, even with treatment: I rarely express joy or pleasure. I am almost always apathetic, despondent or non-responsive. I am plagued with severe fear or horror. I am agitated or aggressive without provocation. I need physical or medical restraints to prevent hurting myself or others;

6. Burdens versus effectiveness: To maintain my existence requires almost constant basic care or life-sustaining medical treatments that will not be effective to provide benefit to my overall quality of life or to allow me to live outside an institution or without being provided institutional level of care or treatment;

7. Burdens versus benefits: Prolonging the process of my dying provides me no benefit that I can appreciate, while the burdens on my loved ones/caregivers are great. Their sacrifices include: depleting their finances, diverting their attention from other important activities and responsibilities of their lives, and suffering from physical exhaustion or mental depression;

8. Regarding food and fluid: I risk contracting pneumonia by aspirating into my lungs what others put into my mouth (but I do NOT want medically-administered nutrition and hydration by tube or IV). I have lost the mental ability to know how to eat and drink. My actions indicate I am reluctant to eat. I do not seem to enjoy food. I can no longer taste and chew since my caregivers must place pureed food at the back of my tongue to make me swallow by reflex.

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How to Order My Way Cards:

Why is it important to sort the cards a second time?

How can you restore the deck of cards to its original sequence?

Perspective: After sorting, people can send Caring Advocates the data on their wallet cards. They will soon receive a letter that explains the enclosures and the process:

Thank you for sorting My Way Cards and sending us the data from your wallet card.

Enclosed is your My Way Cards--Living Will.

We recommend you consider this My Way Cards--Living Will as your FIRST draft.

About a month from now, sort the cards again--for two reasons, which are explained below. After you send in a second wallet card from your second sorting, Caring Advocates send back, your FINAL My Way Cards--Living Will.

These are the two reasons why to sort My Way Cards twice:

One reason is to "think again" so you can demonstrate that your preferences are consistent over time--in terms of your selection of symptoms, losses of function, unwanted behaviors, and conflicts with lifelong values--that you DO, or you do NOT want your future decision-makers to consider, as they determine if it is time to Permit Natural Dying.

"Thinking again" may prevent a future challenge by others who may claim that you might have changed your mind.

The other reason is to "think more deeply" about how strictly you want your future decision-makers to follow your current instructions. You can use the time between your first and second sorting to consider the pros and cons of each of the four choices represented by "My Choice Cards" A, B, C, and D. (To mention just a few examples: Perhaps you were not aware that leaving the final decision totally to your future decision-makers (which is Choice B) might cause them to feel guilt or anxiety, or lead to possible conflicts. Or you might not have appreciated that the strategy for others to honor your wishes is much stronger by choosing D and that an effective strategy is needed if you want to avoid prolonging your dying and to avoid the increased risk of experiencing unrecognized and untreated pain and suffering.)

Each choice is described by an audio message a few minutes long. You can listen to any time by calling "On-Phone Assistance" (worldwide, as explained in the letter), or by clicking on the MP3s on the website, www.MyWayCards.org.

After you listen to these audio clips, you may wish to discuss your options with your proxy, members of your family, your clergy, and/or your physician.

Thinking more deeply is important because it is not enough for your future decision-makers to know which items you want them to consider; they must also know how strictly you want them to follow your current instructions when "that time" comes.

It is not hard to restore a deck of cards to its original sequence. Here's how:

The cards are divided into four sections:

• The first section includes cards that provide initial instructions. Except for the title card, each card in this section has a number in lowercase Roman Numerals--from ii to xi.


• Second are the 47 symptoms, losses of function, unwanted behaviors, and conflicts with lifelong values. These cards are numbered 1.1 to 8.6.
  (Note: there is no card "1.6.")


• Third are the cards that provide instructions on the sorting process and on creating a wallet card. These "after sorting" instructional cards are numbered in UPPER CASE Roman Numerals--from XII to XX.


• Fourth and finally, there is the "Next Steps" card, information about ordering medallions, and further resources. These cards are NOT numbered because their sequence is not important. It is only important that you consider this information so you can make the best decision for yourself.

To create an effective Living Will for Advanced Dementia, sort illustrated "My Way Cards."

Info: 75 slides, 1.6 mb PDF, originally presented on June 2, 2010 in San Francisco, CA; coming soon: MP3 audio. Also available: written comments for each slide.
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