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Strategic Advance Care Planning

The only Advance Directive that includes STRATEGIES
designed so physicians will write the orders you need,
and so third parties cannot sabotage your goal
⁠ — if you ever reach Late Stage Dementia/Alzheimer’s.

Why Strategic Advance Care Planning Can Uniquely Succeed?

Prevent conflict

The only protocol offering a way to be interviewed so you can memorialize on video, precisely WHAT you want and explain WHY, and prove your mind was sound—which clinicians, judges, family members, and others can view if you no longer can speak for yourself.

Boxing Gloves

Comprehensive

The only living will you need to express your judgment about what people dread most about prolonged dying in advanced dementia and other terminal illnesses. The Natural Dying Living Will is complete, not an addendum, but you can add it to your present living will.

Convincing

SEVERE ENOUGH SUFFERING is the most compelling reason for others to allow you to die. The Natural Dying Living Will is the only advance directive that insists on this high standard.

Accessible

The only protocol that stores all your videos and forms, including POLSTs, in a national registry so first responders and physicians can readily access them, to learn your wishes.

Diligent and Deliberative

The only advance care planning protocol offering feedback and discussion with a clinician,
to help YOU be sure your decisions are consistent with each other and meet the standard, “severe enough suffering.”

Easy

The only online and printed programs that describe 50 conditions with plain words and line drawings using the patient decision aid My Way Cards (used for advance care planning since 2009).

Avoid court

The only protocol offering a way to make your forms and videos admissible as evidence.
You may be able to avoid a lawsuit by making your opponents fear they will lose so they honor your wishes.

Advantages of Strategic Advance Care Planning

It is convenient and versatile to complete. Complete the online program using your cellphone or computer. Use the printed version on your kitchen table or desk.

It is easy. It is written at the fourth grade level of reading comprehension and illustrated with line drawings so patients in early stage dementia and those who are very sick or treated with high doses of medication, can understand.

It details your personal wishes and lets you explain to your proxies/agents how to make the same decisions you would make for yourself based on their knowing your values.

It expresses your exact wishes. Review and change your responses until you feel comfortable they are accurate and complete. On average, people use the online program THREE times.

It honors your past experiences, your values, and your wish to avoid both personal suffering and to spare relatives the burdens of your disease.

NOW Care Planning

Does Your Parent or Relative Need Help?

LEARN more about our NOW Care Planning Package

If YOU need help, then please continue reading...

Strategic Advance Care Planning begins with with sorting My Way Cards on your desk or table, or online using your computer, tablet, or cellphone.

The online version of My Way Cards generate living wills for advanced dementia & all terminal illnesses is—with one exception—what we recommend. This video explains why, and more...

What's in The Package:

1. Natural Dying Living Will

Printed on heavy stock bright yellow paper, sent by USPS Priority. Already have a Living Will? Find out how both can serve you better!

2. Physician-Friendly Version of Living Will

The “physician-friendly” version is user-friendly: it presents your advance decisions logically. It also warns physicians about possible legal consequences if they do not honor your known wishes.

3. Video Version of Living Will

You have two options: You can show the “Read-Describe-Decide-Explain Guide” to your own counselor or proxy/agent to conduct the interview, or you can ask to be interviewed by a Caring Advocates—trained counselor. (It is even possible to have both by telemedicine; for example, your counselor is sitting with you at the kitchen table, and a Caring Advocates—trained counselor joins by secure and private internet video.)

4. Ironclad Strategy Forms

The Natural Dying Agreement includes a bilateral legal contract between you and each proxy/agent and alternatives. This makes the durable power of attorney for healthcare decisions as strong as possible since all your proxies/agents will be members of your “Patient Decision Committee.”

Call for Free Consultation:

+1 (800) 647-3223

Or Text: +1 (760) 704-7524

Strategic Advance Care Plans

Plan Now, Die Later® — To Live Longer

Initial Plan

Complete a Living Will for 50 conditions based on severe enough suffering.

Diligent Plan

Express your diligently reconsidered wishes strategically. Record them on video.

Strategic Plan

Implement strategies to compel physicians to sign orders & prevent sabotage by third parties.

Services Initial Plan Diligent Plan Strategic Plan
The long-term mission of Caring Advocates is to offer help to patients and families presented with huge end-of-life challenges of Advanced Dementia—regardless of their ability to pay or what type of insurance they have (if any). This table presents three levels of service offerings, for those who cannot afford the full program. Call us at 800 64-PEACE (647 3223) to see how we can help you.
My Way Cards - 50 conditions comprehensively reflect what people dread most
Proxy Directive - Digital version - specific for your state
Natural Dying Living Will (NDLW) - Digital (PDF) version + print version by Priority Mail
Natural Dying Living Will (NDLW) - Physician-Friendly + Strategic Warning
Form to request total relief from all types of pain and suffering
Form to refuse thickened food &180 fluid—for a more peaceful dying (even if sooner)
Clinician’s video: comments about your responses

Watch example of clinician's video ⇒
Clinician discussion: by phone or internet video
Interview Guidelines: to create the oral testimony of your living will*
Natural Dying Agreement: so requests are irrevocable & advocates are effective
Natural Dying Agreement’s strategies to compel physicians to sign needed orders
Natural Dying Agreement’s strategies to prevent sabotage by third parties' claims
Natural Dying Affidavit so all forms and video can be evidence in courts of law
Several POLST forms for physicians to sign: CPR (conditional), DNR, or DNR+Natural Dying
MyLastWishes.org national registry: stores forms & videos for clinicians’ rapid retrieval Optional
The long-term mission of Caring Advocates is to offer help to patients and families presented with huge end-of-life challenges of Advanced Dementia—regardless of their ability to pay or what type of insurance they have (if any). This table presents three levels of service offerings, for those who cannot afford the full program. Call us at 800 64-PEACE (647 3223) to see how we can help you.

* You will not need these guidelines if you ask a Caring Advocates trained clinician to interview you. The fee may be partially covered by your insurance; for example, (regular) Medicare allows $165 per hour. Call our staff to ask about your specific insurance. Cost of other items may or may not be covered.

Summary and comparison of the “FOUR” Plans:

1. The INITIAL Plan lets you complete a Living Will that is CLEAR and COMPREHENSIVE— by striving to avoid conflict by specifically expressing what you dread most about a prolonged dying in advanced dementia or similar terminal illnesses.

2. The DILIGENT Plan lets you complete a Living Will that is CONSISTENT with the highest standard of Severe Enough Suffering—that strives to make your requests CONVINCING.

3. The STRATEGIC Plan lets you add STRATEGIES to your completed Living Will that strives to make your advance directive COMPELLING—so your proxy/agent can be successful in persuading your treating physician to honor your end-of-life wishes and in preventing third parties from sabotaging those wishes, including possible conflicting desires expressed by your “future demented self.” The STRATEGIC Plan also lets you express your wishes in a way that is COMPATIBLE with the most widely used physician order forms.

4.Plan ZERO” is the default plan, which is really neither offered nor recommended. It replaces any real Plan above with only HOPE by NO plan—you just hope you will be among the fewer than half of people who die suddenly so they do NOT NEED Advance Care Planning.

a. Advantages of Plan ZERO: minimum time, minimum energy, and minimum cost.

b. Disadvantages of Plan ZERO for your loved ones: Your physician may ask your loved ones to make a life-determining decision for you, but they will not be sure what you wanted. Uncertainty often results in deeper and longer grief. Worse, a long, emotional conflict may ensue.

c. Disadvantages of Plan ZERO for you:
ZERO Plan does NOT ask your loved ones to advocate your thoughtfully expressed end-of-life wishes. So others may force you to endure a prolonged dying with severe suffering. You may not attain your goal of a peaceful, timely dying because you no longer can speak for yourself.

“Almost ZERO Plan” is what many people already have: a “traditional” living will that has asked them to only check a few boxes on a form that was not designed to meet the challenges of advanced dementia or similar terminal illnesses. Ineffective living wills can be as useless as none. Example: view the video, “Free Evaluation of your Living Will.

/ changed to Seven 08/11/24

Seven Steps to Strategic Advance Care Planning

Why: Imagine receiving well-meaning but unwanted treatment that maintains your existence in an advanced stage of dementia—while you cannot articulate that your suffering is so severe, so difficult to detect, and so challenging to treat—that you prefer to be allowed to die. Further imagine that you currently do not know how, or are incapable of expressing your wish, to end your torment. Or, if you would consider stopping your intake of food and fluid, or receiving enough sedation to end your suffering, you would not know how to convince your future physicians/providers to comply with your wishes if they considered these treatments controversial based on their possibly hastening your dying.

Dedicated healthcare providers may not be able to observe some sources of your suffering because your pain is not detectable, your disease is causing your loved ones to suffer, or your suffering will occur in your future. One example is leaving your survivors tarnished memories of yourself. Those who observe you in an advanced stage of dementia may conclude, “You are just sitting there,” but your existential suffering from losing important relationships has left you socially isolated and terribly lonely—after dementia has destroyed your sense of your own identity, your ability to recognize and communicate with others, and made you incapable of recalling past shared experiences.

The number of persons now living in advanced dementia (PLADs) is likely over two million in the U.S., and will likely double by 2050. While no one knows the precise percentage of patients whose suffering is severe, estimates are arguably between 25% to 50%. Caring for these patients can be physically, emotionally, and financially burdensome to patients’ family, friends, and society. The cost of care can climb to $125,000 annually. Some patients may live a decade. For those over 65, the risk of getting dementia doubles every five years; almost 10% have dementia; and one-third will die with dementia.

While assessing the intensity of your current suffering is elusive since many sources are non-observable, you can take effective action by planning ahead; that is, by completing Strategic Advance Care Planning. This protocol begins by asking you to judge 50 specific clinical conditions that you might someday reach. Your judgments for each condition’s potential to cause future suffering can then be based on your lifelong values and treatment preferences.

When: You must complete Strategic Advance Care Planning (SACP) while you still have decision-making capacity (DMC). DMC is the mental ability to perform the specific task of making conditional advance treatment decisions. “Conditional” means you have reached an observable future clinical “qualifying” condition. The premise that underlies this approach is that clinical conditions can be observed, but how much suffering they may cause is up to you to judge. DMC requires your ability to understand the treatment options, appreciate each option’s likely consequences, use rational thinking to render a diligent, deliberative decision, and to express this decision consistently over time. One advantage of Caring Advocates’ “My Way Cards” online program that generates your “Natural Dying Living Will” is that each of its 50 conditions is illustrated and written at the third-grade level of reading ability.[1] Lowering the comprehensive level to complete this task makes it possible for many patients in early dementia to have sufficient DMC to complete their Natural Dying Living Will. Note: you can lose your DMC in ways other than dementia such as head trauma due to a car accident, a stroke, end-stage kidney or liver disease, other neurodegenerative diseases, and side-effects from medications, including pain relieving medications. You must complete DMC before any of these occur, so don’t delay in completing Strategic Advance Care Planning.

Who: Caring Advocates is a not-for-profit organization founded by, and continuously led by bioethicist/psychiatrist Stanley A. Terman, Ph.D., M.D., since 2000. The protocol, Strategic Advance Care Planning, is designed for people who want to control how and when they die (as much as feasible). Unlike other protocols, SACP does not stop after helping patients complete a comprehensive, clear and convincing, living will that states what treatments patients want if they reach a specific condition. (Note: “clear and convincing” is the highest standard of evidence in civil legal matters.) SACP adds layers of strategies to make success likely, where success is defined as patients receive the treatment they want. The Caring Advocates team can work with hospice if its medical and administrative leaders agree with the treatment that your Natural Dying Living Will instructed, although some authorities consider Natural Dying and Moderate Anesthesia controversial. If so, Caring Advocates may still be able to help without hospice. It depends on the specific circumstances that can be discussed.

How: Strategic Advance Care Planning has two parts: Planning and Implementation. You can create a plan now that is designed to be straightforward to implement later—even if Dr. Terman is not available. To explain: You can have a POLST Conversation with Dr. Terman, who will determine that you have DMC and share an adequate amount of information with you. Then, you can give your informed consent by signing/completing each POLST that contains medical orders written by Dr. Terman to fulfill your end-of-life goals. Example: you want to avoid a prolonged dying with suffering, and you want to live as long as you can still enjoy life, so you do not want your dying to be premature.

Each POLST is a set of specific immediately actionable physician orders that other health care providers are required to honor in all settings—including your home, hospital, skilled nursing facility, or luxury hotel to which you may move if comfort care cannot be obtained in your current residential setting. There are two exceptions to requiring other healthcare providers to honor your POLSTs, but they are infrequent. Both can be worked around. (A) Providers and institutions are required to reveal if they have a moral conflict with any intervention so that proxies/agents can seek treatment from other health care providers and institutions to provide the care that you desire. (B) Providers who claim the intervention requested is not consistent with generally accepted medical care must do so in good faith. Your proxy/agent may petition a court of law to prove this, and if they fail, they risk losing their legal immunity. Most importantly, your POLST and your Natural Dying Living Will can work together if you follow the recommendation of adding this order to each POLST: “POLST orders must be consistent with the patient’s directive (living will).”

Completing POLSTs requires four tasks. Dr. Terman and his staff routinely complete the first three:

  1. Dr. Terman or his staff can facilitate your deciding and memorializing which category of treatment you want upon reaching specific future clinical (qualifying) conditions. This task uses the online program of My Way Cards to generate a Natural Dying Living Will.
  2. Dr. Terman can, during the POLST Conversation, provide adequate information and determine if you have sufficient decision-making capacity to sign POLSTs whose orders could be life-determining.
  3. Dr. Terman can write orders on POLST forms, so you can receive goal-concordant care. Note that tasks 1 to 3 can be completed during advance care planning.
  4. If someday, you reach a “qualifying condition,” any physician/provider can implement the orders on these POLSTs, as explained below.

To explain: The usual and customary practice of medicine includes asking a currently treating physician to rely on the assessment and to carry out the orders that a previous physician wrote—if the patient’s clinical condition warrants these orders. While the needed orders may be legal, clinically appropriate, and moral, some physicians will still consider them controversial. If the currently treating physician refuses to implement a POLST, the proxy/agent must search for another physician who is willing. Since sabotage is possible after these orders are written, SACP also includes additional strategies designed to overcome them. An example: after you become an incapacitated person currently living with advanced dementia you may still request assisted feeding and hydrating even though you have reached a qualifying condition as expressed stated in your Natural Dying Living Will.

Learn More

IS YOUR GOAL a PRIVATE, PEACEFUL, and TIMELY DYING — BASED on YOUR VALUES?

Our MISSION is to help YOU and your LOVED ONES avoid
prolonged dying with unnecessary suffering.

➜ Don’t sacrifice years of relatively good living by hastening your death prematurely.

➜ Complete “Strategic Advance Care Planning” to feel confident others will honor your plan.

➜ Then enjoy living until a future condition causes severe suffering.

➜ That’s what it means to Plan Now, Die Later®–To Live Longer.

My Way Cards examples

For Most:
No Suffering

For Most:
Severe Enough Suffering

People’s judgments vary

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+1 (800) 647-3223

Or Text: +1 (760) 704-7524

Not Sure Which Package Is Right For You?

Call Dr. Stanley Now for a Free Consultation!

Short Bio & CV Link

Stanley A. Terman, PhD, MD

Dr. Terman has devoted the last 15 years of his career in psychiatry and bioethics to developing a user-friendly, clinically effective patient decision aid plus a set of strategies that will likely succeed where other living wills/advance directives may fail.

The goal is to facilitate patients’ success in experiencing a private, peaceful, and timely dying and to avoid prolonged dying with suffering for any terminal illness, especially advanced dementia. Dr. Terman considers the greatest reward he can receive is to reduce the suffering of patients and their relatives who face the huge challenge of advanced dementia.

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Dr. Stan Terman

Stanley A. Terman’s career is dedicated to empowering people to make informed decisions so they can successfully meet challenges in their lives with more pleasure, less suffering, and improved relationships. He considers life a journey that includes major transitions, some of which are quite challenging. His approach to planning for life’s final transition is detailed on this site. This webpage features several short (3-minute) videos. Dr. Terman founded and has led the non-profit organization, Caring Advocates since 2000. He has published several books and articles on end-of-life planning and ethics, including “The Best Way to Say Goodbye,” “Lethal Choice,” and “Peaceful Transitions.” In 2009, he created an illustrated patient decision aid that generates a living will that is for all terminal illnesses but especially focused on the challenges of advanced dementia. These “My Way Cards” are now available online and can even be completed by using a cellphone. He also developed a protocol for patients who have already reached an advanced stage of dementia without an effective (or any) living will. Dr. Terman’s latest presentation was at the California Coalition for Compassionate Care, and focused on Common Flaws in Living Wills for Dementia.

Dr. Terman received his AB from Brown University, his PhD from MIT, and his MD from the University of Iowa. He taught in the Department of Psychiatry at University of California, Irvine, before going into private practice and becoming a bioethicist.

DrTerman@CaringAdvocates.org

(800) 647 – 3223 (64 PEACE)

Available by telepsychiatry worldwide via Zoom/SecureVideo, offices in San Francisco area.

Trina Wacasey, PhD

Trina Wacasey’s career is devoted to guiding families through Medical Aid in Dying (MAiD) and Voluntarily Stopping of Eating and Drinking (VSED). She is also an expert in providing Family Involved Death Care. Dr. Wacasey earned her doctorate at Texas A&M University in the field of Human Resource Development. She received her End-of-Life Doula training from the Conscious Dying Institute in Boulder Colorado. She currently serves on the board of the Bay Area Funeral Consumers Association and volunteers at two non-profit hospices in the San Francisco/San Jose area.

Trina educates the general public about alternative hands-on practices that express honor and respect to the dying person. She offers practical, spiritual, and emotional guidance as she collaborates with medical and funeral professionals to ensure her clients are well educated and supported.

Money-Back Guarantee

Caring Advocates is sure that your Natural Dying Living Will can express your end–of–life wishes specifically, clearly, and comprehensively. If you are not completely satisfied, you will receive a 100% refund of your payment.

Dr. Terman explores a way of dying that is relatively painless, effective, legal, and in keeping with many religious traditions. Critically important for individuals, families, health care professionals, and public policy experts, his book really does point to The BEST WAY to Say Goodbye.

Elliot N. Dorff, Rabbi, Ph.D.
Rector and Distinguished Professor of Philosophy, University of Judaism
author of Matters of Life and Death: A Jewish Approach to Modern Medical Ethics

Publications

 

Click on an article headline below to expand and view article

Flaws in Advance Directives that Request Withdrawing Assisted Feeding in Late‑Stage Dementia May Cause Premature or Prolonged Dying - October 6, 2022

click here for the full article

Background: The terminal illness of late-stage (advanced) Alzheimer’s and related dementias is progressively cruel, burdensome, and can last years if caregivers assist oral feeding and hydrating. Options to avoid prolonged dying are limited since advanced dementia patients cannot qualify for Medical Aid in Dying. Physicians and judges can insist on clear and convincing evidence that the patient wants to die—which many advance directives cannot provide.

Proxies/agents’ substituted judgment may not be concordant with patients’ requests. While advance directives can be patients’ last resort to attain a peaceful and timely dying consistent with their lifelong values, success depends on their being effective and acceptable. A single flaw can provide opponents justification to refuse the directive’s requests to cease assisted feeding.

Aim: This article considers 24 common advance directive flaws in four categories. Process flaws focus on how patients express their end-of-life wishes. Content flaws reflect drafters’ selection of conditions and interventions, and how they are described. Inherent flaws can make advance directives unacceptable to authorities concerned about premature dying. Strategies are needed to compel physicians to write needed orders and to prevent third parties from sabotaging these orders after they are implemented. The article includes excerpts from “dementia-specific” directives or supplements that exemplify each flaw—mostly from the US and Europe. No directive critiqued here included an effective strategy to resolve this long-debated bioethical conflict: the past directive requests “Cease assisted feeding” but the incapacitated patient apparently expresses the desire to “Continue assisted feeding.” Some opponents to the controversial request, cease assisted feeding, use this conflict as a conceptual wedge to practice hard paternalism. This article proposes a protocol to prevent this conflict from emerging. These strategies may prevent authorities from requiring patients to fulfill authorities’ additional clinical criteria as a prerequisite to honor the requests in patients' directives.

 

Opinion: Can you trust doctors to honor your end-of-life wishes? Here’s what to consider. - June 2, 2021

Terman, Ph.D., M.D., is a psychiatrist and bioethicist. He lives in Sausalito. Steinberg, M.D., is a hospice and palliative medicine specialist, bioethicist and nursing home and hospice medical director in Oceanside. The opinions expressed are those of the authors, not the organizations with which they are associated.

No one doubts the importance of completing living wills — especially for advanced dementia — a cruel disease that most people dread since it can cause prolonged dying with severe, irreversible suffering as it imposes huge burdens on loved ones. But by themselves, living wills will not be adequate if your future physician refuses to honor its requests. A recommended request is: “Cease putting food and fluid into my mouth if I reach a specific condition.” Honoring this request can prevent being forced to endure years of suffering since you will not need to wait to die from a heart attack, or untreated infection such as pneumonia. After you no longer can feed yourself, the only legal, peaceful and effective intervention may be to cease assisted feeding and hydrating by another’s hand. This challenging and controversial intervention raises questions for your physician, and for you.

Is your physician’s refusal to honor your wishes good or bad? “Good” means in your “best interest” such as preventing premature dying. “Bad” means forcing you to endure prolonged, and likely increased, suffering with little or no benefit.

Are physicians’ actions well-meaning or selfish? “Selfish” means refusal benefits your physician as it harms you. Physicians’ hubris leads to their desiring that their actions are viewed favorably — while you suffer longer, and more. Many physicians want to view themselves as heroes who sustained your life. But the ethical position of the American Medical Association is clear: “The social commitment of the physician is to sustain life and relieve suffering. Where the performance of one duty conflicts with the other, the preferences of the patient should prevail.”

A comprehensive question for physicians to ask: Are their actions legal, ethical and respectful? You have a claim right to self-determination (what happens to your body) and to avoid suffering. Claim rights impose a duty on others to act by honoring your rights, so ... physicians should attempt to reduce your suffering and physicians should not violate your bodily integrity. This includes assisted oral feeding and hydrating — if you previously refused it. In addition to being unethical, force feeding may be illegal since battery is a crime. Yet some physicians argue they must consider all available information, strive to do no harm and maximize what they feel is your benefit. Hence, your living will’s future success depends on your resolving common conflicts during advance care planning.

Some questions for you: Do you prefer fast and easy living wills that ask you only to check a few boxes before signing? Do you consider your task complete once you clearly expressed your wishes? Is your living will specific enough to avoid conflict? Is it comprehensive so you don’t suffer from omitted conditions? Does it strive to be “clear and convincing” — the highest evidence standard in civil law? Will you record a persuasive video on which you state what you want, and explain why?

Even the above amount of effort may not be successful. A large, influential physician organization, The Society for Post-Acute and Long-Term Care Medicine, recommends not honoring requests to stop assisted feeding until you manifest behavior it interprets as either refusal or distress. Also, physicians and others can allege you changed your mind based on observing you open your mouth and swallow what others put in. But your apparently cooperative behavior may result from reflex or habit, after dementia has caused you to forget your critically important life values — to avoid suffering and imposing burdens on others.

Advance care planning must lay the groundwork to persuade future physicians to honor your end-of-life wishes. Living wills can include cogent arguments that cite clinical literature and case law to compel your physician to respond — especially if conflicts escalate to court. Among several recommended strategies, here are two.

Insist no one can claim you changed your mind to want spoon feeding — unless two experts qualified in the fields of dementia, capacity and assisted feeding so testify within a reasonable degree of medical certainty.

Store your printed forms and videos in an electronic registry so physicians and EMTs can expeditiously retrieve the current versions.

Admittedly, there is no proof (yet) that adding recommended strategies will increase your chance of success. (The reason: it will take years to gather enough data for those who completed advance care planning to eventually encounter conflicts.)

So can you trust doctors to honor your end-of-life wishes? Are you kidding? Current experience leads to this recommendation: Do not kid around. Put in the required time and effort to give yourself the best chance of experiencing a peaceful and timely dying.

Terman, Ph.D., M.D., is a psychiatrist and bioethicist. He lives in Sausalito. Steinberg, M.D., is a hospice and palliative medicine specialist, bioethicist and nursing home and hospice medical director in Oceanside. The opinions expressed are those of the authors, not the organizations with which they are associated.

 

Meeting the Challenges of Advance Care Planning for Advanced Dementia – A Social Justice Imperative. - Mar 20, 2020

 

By Dr. Stanley Terman

It is not easy to die of advanced dementia. Yet almost everyone has this goal: a dying that is private, peaceful, and timely.

Dementia patients cannot qualify for Medical Aid in Dying (Physician-Assisted Suicide). Usually, their only legal, peaceful option is to stop ingesting food and fluid. Yet some authorities strongly oppose this way of dying. Knowing that traditional advance directives are not effective, and learning that authorities may oppose newer “dementia-specific” directives/living wills, many patients harbor the “Dementia Fear.” They have reason to worry that others will force them to endure prolonged dying, possibly with increased suffering, perhaps for years.

Some patients strive to make their ultimate existential decision at “five minutes before midnight”—to live as long as possible. But they live with this source of daily anxiety, which decreases their ability to enjoy life: “If I wait too long, I will miss the opportunity to kill myself by losing my mental or physical capacity.” Some commit preemptive suicide, an option that requires sacrificing up to years of good living that is not only sad but tragic. Premature dying would not be necessary if patients could trust others to honor their end-of-life wishes.

End of Life Choices of New York’s directive attempts to overcome opposition by offering an “aggressive” option that totally dismisses patients’ feeding behavior as criteria to stop assisted feeding. But their alternative–reaching Stage 6 of any version of the Functional Assessment Staging Tool—brings up another problem: most physicians will continue assisted feeding even if patients manifest all the tool’s listed behaviors: patient needs help putting on clothes, bathing, and toileting; and has urinary and fecal incontinence.

Compassion & Choices’ Dementia Values and Priorities Tool lets planning principals choose one or two of 15 conditions as sufficient to be allowed to die naturally, and a separate list of 7 behaviors as sufficient to stop assisted feeding. Yet treating physicians and their organizations may insist patients’ best interest is to continue assisted feeding unless they manifest distress.

To overcome physician refusal, one could insist on the criterion, severe enough suffering. But clinicians recognize it is difficult to determine if non-verbal advanced dementia patients are experiencing severe suffering—especially with the certainty needed to allow patients to die.

Strategic Advance Care Planning could offer a possible solution: During advance care planning, planning principals judge each condition by responding to: “Would this condition cause severe enough suffering for you to want to die of your underlying disease?” To determine if it is time to stop assisted feeding, treating physicians then need only assess if their patients have contemporaneously reached at least one of these pre-judged clinical conditions.

The online patient decision aid informs planning principals what it is like to live with advanced dementia using 50 illustrated descriptions at a level of reading comprehension of grade 4, which many early stage dementia patients can understand. It achieves this by broadening the concept of suffering to comprehensively reflect what people dread most about prolonged dying in advanced dementia and other terminal illnesses. In addition to physical and emotional suffering, it considers existential suffering (loss of meaning in life and the ability to relate to others); suffering due to disruption of life narrative; suffering the disease causes loved ones; and moderate suffering from several conditions that add up to severe.

Recording planning principals’ semi-structured interviews on video can: memorialize their advance decisions; demonstrate if they possessed decision-making capacity; let them add personal details about their end-of-life wishes; and, most importantly, give them an opportunity to be convincing.

In cases of advanced dementia, clear, comprehensive, consistent, and convincing directives/living wills may not, by themselves, be effective. It is important that an advance directive include over a dozen strategies in order to compel physicians to honor, and to prevent third parties from sabotaging planning principals’ end-of-life goal.

The post Meeting the Challenges of Advance Care Planning for Advanced Dementia – A Social Justice Imperative appeared first on Bill of Health. Bill of Health was launched in September 2012 by the Petrie-Flom Center at Harvard Law School to provide a one-stop shop for readers interested in news, commentary, and scholarship in the fields of health law policy, biotechnology, and bioethics.

 

 

NOW Care Planning

Does Your Parent or Relative Need Help?

For People Who Need Help Now.

If YOU need help, then please continue reading...

Caring Advocates is a 501(c)(3) non-profit. EIN: 33-0903574.  ©2007—2020 Caring Advocates or Stanley A Terman. All Rights Reserved.