Six Steps to Strategic Advance Care Planning

How it works:

Step 1 uses My Way Cards, an online, illustrated patient-decision aid, to generate your Natural Dying Living Will^[1]. Each of the 50 cards illustrates and describes one end-of-life or advanced-dementia condition written at the third-grade level of comprehension. Together, these conditions strive to comprehensively reflect what people dread most about being forced to endure prolonged dying in advanced dementia and other terminal illnesses. The descriptions are behavioral, not diagnostic. For example, if you cannot move your body irreversibly, even to say hello, how much difference does it make if you are living in an advanced stage of dementia, a persistent vegetative state, had a stroke, or living with ALS (Lou Gehrig’s disease)? Using behavioral criteria reduces potential conflict over the correct diagnosis and reflects what people care about most: losses of functioning and unwanted, embarrassing behaviors. The most important questions are not about diagnosis, but rather: Is your condition irreversible? and, Will it cause you and/or your loved ones to experience severe suffering?

You can complete the My Way Cards program using your computer, tablet, or cellphone. (A printed version is available upon request.) For each condition, you will be asked to respond to:

Based on your lifelong values and treatment preferences, do you judge this condition will, by itself, cause severe enough suffering to want to be allowed to die of your underlying disease?

If your answer is, “No or mild suffering that is not enough,” then you may decide you want to receive cardiopulmonary resuscitation (CPR) with Full Treatment, or DNR but Full Treatment otherwise. But if you depend on a caregiver to feed and hydrate you, and you still enjoy life, you can choose a POLST that orders CPRL. This means only one Full CPR attempt, and then—if successful—

Selective/Limited Treatment, so you will not be subjected to burdensome, invasive treatment including CPR. Your code status will be DNR.

If you judge your suffering will be severe from a condition, you can express your wish that your physician implement orders for Natural Dying (ND), which can be clinically effective to allow you to have a timely dying—even if you have “No Plug to Pull,” which means sustaining your life does not depend on receiving high-tech medical treatment. In contrast to some living wills, the Natural Dying living will does not demand withholding of food and fluid, which can be criticized as euthanasia. Instead, it withdraws assistance with assisted oral feeding and hydrating by caregivers’ hands. The two orders for Natural Dying are:

“Cease assisted oral feeding” and “Always place food and fluid within the patient’s reach.”

Note: Other living wills can be completed in less time, but if they are not both effective and acceptable, they may not fulfill their purpose. Those in authority must accept the order when the time comes to implement your wishes, and many will insist on being able to view it as moral.^[4]

Using the criterion, “how much suffering would the condition cause?” is more compelling and specific than criteria included in most traditional and the new crop of “dementia directives.”^[3] For example, the question of, “Will the harms and burdens of treatment outweigh its benefits?” is a laudable goal in theory, but in practice is usually too vague. Judging that your “Quality of Life” is too low, or that your “indignity” is too high, are also vague. Worse, such questions could lead to judging the lives of others are not worth living, which could start a dangerous slippery slope.

Other living wills pinpoint a substage of the Functional Assessment Staging Tool (FAST scale), but this approach to timing has an underappreciated problem: FAST is a research tool; it was not designed for making end-of-life treatment decisions. More generally, a living will whose criteria are based on reaching clinical conditions may be flawed and lead to premature dying. Example: it would be premature to allow you to die once you no longer can recognize your close family members,” since you and they may still enjoy spending time with each other.^[2] A 2022 critical review of a new crop of dementia-specific directives revealed all had one or more flaws that may lead to premature or prolonged dying.^[3]

Until recently, another great challenge was unappreciated, yet for these unfortunate patients, all previously drafted living wills for dementia will not be able to fulfill their promise of delivering a peaceful and timely dying. I refer to their state as living in the Dementia Gap, which is illustrated and defined below. Patients living in the Dementia Gap have this “problem”: they can still eat and drink independently, so they cannot rely on their advance decision to refuse assisted oral feeding and hydrating (Natural Dying). Responding to this unique patient need, another intervention was developed in 2024. [Terman, S. A. (2024). Timely dying in dementia: To overcome the Dementia Gap, can Moderate Anesthesia be viewed as moral? (Manuscript in preparation.)

The Dementia Gap is a period of time. It begins with patients’ loss of capacity to exercise their right to refuse all food and fluid; that is, to Voluntarily Stop Eating and Drinking. The Dementia Gap ends when, due to the progression of dementia, patients lose their ability to eat and drink and need assistance from caregivers. Then then qualify for Natural Dying. Little is known about the Dementia Gap, such as its prevalence, and average and range of duration. So, no guideline is available to help physicians estimate how long their patients may remain in this state. Experience has shown, however, that loved ones of patients living in the Dementia Gap need proactive grief counseling.

You can choose to receive Moderate Anesthesia (MA) in advance, if you are in the Dementia Gap and reached two or more conditions you judged would cause exceedingly severe suffering. The level of sedation in MA is similar to that induced during endoscopy: a very deep sleep, so you do not respond purposefully to moderately loud verbal commands or to moderate tactile stimulation, but you do withdraw from painful stimuli, and you can breathe on your own without a respirator.

The new, purely clinical term, Moderate Anesthesia, is preferred to older terms such as palliative sedation to unconsciousness, or terminal sedation, since it does not imply a physician intent that opens the door for moral criticism. Yet MA can still be viewed as an “intervention of last resort” since there may be no other way to reduce the suffering of patients living in the Dementia Gap.

We still need to learn what the average and range of how long the Dementia Gap can last, what factors can help physicians estimate how long their patients may live in this state, and how many people are currently living in this state. (My forthcoming article estimates a million people.)

Your physician’s intent in inducing MA can be either to reduce the source of your suffering, or to decrease your awareness of suffering. The first has a foreseen, possible, but unintended side-effect of rendering you unconscious, and possibly ending your life earlier. The Rule of Double Effect may morally justify MA if your physician intended only the “good” effect (to reduce your suffering), but did not intend to use the possible “bad” effect (causing you to die) as the means to reduce your suffering.

Physicians may also intend to deliberately reduce your consciousness by slowly increasing the dose of sedating medications until you are no longer aware of your suffering.

To help prove your physician’s intent is to reduce your experience of suffering but not cause your earlier death, the “Respite Sedation” protocol can be used. You can agree to be awakened after about four days by reducing or stopping medications so your physician can ask you, “Has this rest allowed you to regain enough strength, so you want to continue to live and be awake?” (The part of the protocol cannot apply to PLADs since they will have lacked DMC before sedation and will therefore not be able to answer this question.)

Benefits of the patient decision aid, My Way Cards

Educates you about what it can be like, for you and your loved ones, to live with advanced dementia and other terminal illnesses with both illustrated cards and online videos.

Facilitates your making a clear and specific advance treatment decision for each condition, so you can express what intervention you want and when, based on your lifelong values.

Memorializes your wishes to inform your future physicians and others.

Reduces your agent’s emotional burden since they will be following your decisions, not making life-or-death decisions on your behalf. Your agent’s main role is to serve as your advocate by persuading your future treating physician and others to honor the treatment decisions that you previously made. Agents will only be asked to exercise their “substituted judgment” (their traditional role) if your living will does not include the condition you reached. Then, your agents will take into consideration your current condition and your future prognosis, and based on knowing your lifelong values and general treatment preferences well, strive to make the same decision you would have made.

Why this Step is Unique

The online program that uses My Way Cards to generate your Natural Dying Living Will strives to be comprehensive by including about fifty conditions. It can be your only living will since it is not merely an addendum. Since the descriptions of the conditions are illustrated and written at the thirdgrade level of reading comprehension, even early-stage dementia patients who experienced a decrease in cognitive functioning may be able to use it to express their end-of-life wishes.

Definition of the broadened concept of suffering

The online program that uses My Way Cards to generate your Natural Dying Living Will strives to be comprehensive by including about fifty conditions. It can be your only living will since it is not merely an addendum. Since the descriptions of the conditions are illustrated and written at the thirdgrade level of reading comprehension, even early-stage dementia patients who experienced a decrease in cognitive functioning may be able to use it to express their end-of-life wishes.

The broadened concept of suffering includes sources that cannot be detected by observing the patient.^[2] They include: 1) physical pain that physicians and others may not detect; 2) emotional or psychic suffering; 3) existential suffering such as loss of meaning in life, fear of dying, and nearly total social isolation due to losing the ability to communicate due to inability to recognize loved ones and to recall significant life events; 4) disruption of life narrative, such as prior roles in one’s family, career, aand society that gave life meaning; 5) not being able to spare loved ones from emotional, physical, and financial suffering; 6) causing others to suffer by their empathy for your suffering; and 7) the dread of leaving tarnished memories with your future survivors. While such sources of suffering are not currently observable, many people, including physicians and providers, do not appreciate this point.^[2]

The Natural Dying Living Will provides a way for your future physicians to answer the “when” question. Uniquely, they do not need to assess your contemporaneous suffering. Instead, physicians only need to answer this question, to determine if it is time for implementation:

Have you, my patient, reached a condition that you previously judged would cause you severe-enough suffering to want to be allowed to die from your underlying disease?

How it works

You will receive a PDF of your Initial Natural Dying Living Will by email. It will have certain conditions highlighted that you can discuss with your ACP counselor by phone or by Zoom. Your responses should be consistent with each other and with generally accepted medical practice. For example, if you asked for Natural Dying if you lost your ability to read a newspaper or to balance a checkbook (which conditions are not in the My Way Cards), your counselor would inform you that it is extremely unlikely your future treating physician would honor your request because it is not usual and customary to allow patients to die whose suffering is not severe and can likely still enjoy other simple pleasures of life. Allowing you to die for these conditions could be deemed illegal and immoral. Yet a well-known bioethicist/attorney published his own living will that made this very request.^[5] We debated the likely success of his living will in an Alzheimer’s Association Journal.

Benefits

A review of your initial Natural Dying Living Will considers: 1) Are your decisions consistent with each other? 2) Are they clinically appropriate—by insisting on severe, or exceedingly severe suffering? and 3) Do they conform to generally acceptable medical practice? Most patients revise several decisions in Step 2. The reviewing/revising process can demonstrate that your decisions were diligent, deliberative, and consistent over time. Also, if you present your reasons for making certain changes after further discussion, physicians and others are more likely to honor them.

Why this Step is Unique

We know of no other ACP program that offers counselors’ critical comments with the opportunity to discuss your initial responses, so you can diligently and deliberatively revise your living will. By the end of Step 2, most patients will have made changes that they feel are important and feel at peace with them because they reflect what they really want.

Recommended Video^[6]: Why I Changed My Mind—From Natural Dying to Treat & Feed—for Certain Symptoms of Advanced Dementia

How it Works

Consider the two PDFs you will receive by email to review with an advance care planning provider and make any further changes for your “Final Natural Dying Living Will.” (Note: you can always change your advance treatment decisions as long as you have DMC.) There are two versions: a short one that follows the sequence in which you made your decisions (“By Condition”). This format is convenient to compare your initial and final responses. Your oral testimony from your clinical interview in Step Four will also follow this sequence, which you can record on video. The longer version strives to be clinically logical. It begins with conditions causing exceedingly severe suffering, then severe suffering, next moderate suffering, and finally no or mild suffering. This “By Category” format is designed to be physician-friendly by making it easier for your future treating physician to decide what intervention is most appropriate for your current condition.

here are other decisions you can make on your “By Category” Natural Dying Living Will. These include: Who will be the members of your Patient Decision Committee? Is there anyone whom you want to disqualify from influencing your end-of-life decisions? And, Are there general types of health care institutions or specific ones to which you do not want to be admitted?

Benefits

This step demonstrates that you made these difficult, life-determining decisions after diligent, deliberative discussions that were consistent over time or changed after further consideration (which you can explain in your own words in the video that you make in Step 4).

The Final Natural Dying Living Will “By Category” also includes strategy to motivate future physicians to honor your wishes. It warns them that they risk losing their legal immunity, and become liable to being sued, if they ignore your known end-of-life wishes.

Why this Step is Unique

Other advance care planning protocols do not encourage patients to revisit their advance treatment decisions at least twice. Many living wills require only a few checkmarks, initials, or a final signature to memorialize these existentially important advance treatment decisions.

How it Works

Your interview can be recorded online using a HIPAA-secure version of Zoom (or in person if preferred). The video can be stored on one or more of the following: DVD, USB drive, in the cloud on your or Caring Advocates’ servers. YouTube provides easy access if you view its limited privacy settings acceptable. Once your video is stored, you need to share only its link with all concerned.

Benefits

Step 4 presents your own voice and face to inform others exactly what you have decided for each condition in your Final Natural Dying Living Will. Your presentation can help your loved ones feel at peace with your end-of-life decisions since you—not they—made these decisions, and you explained them fully in your own voice. (Recommended: your agent can be present during the video interview.) The goal is to reduce ambiguity more than if you completed only the print version of your living will. In the future, if necessary, your agent can use excerpts from this video to help convince your future physicians to comply with your specific wishes so you can attain your end-of-life goals.

If a question arises about your capacity, or why you made certain decisions, future physicians can view your video, at end of which will be your interviewer’s contemporaneous opinion about whether you possessed capacity. Decision-making capacity (DMC) means that you 1) understood your treatment options; 2) appreciated the consequences of each treatment option; 3) used logical reasoning to reach a treatment decision for each condition; and 4) expressed your decisions in a coherent way that was consistent over time.

Step 4 requires a trained, qualified clinician for patients who have a diagnosis that typically affects thinking, memory, or judgment (e.g., mild cognitive impairment, early dementia, brain trauma, brain tumors, high doses of pain medications, and end-stage liver or kidney failure).

Caring Advocates’ clinicians are trained to conduct semi-structured interviews for your advance informed consent and to use the collaborative, respectful approach that the Emanuels (1992) described.^[7]

Their “deliberative” physician-patient model strives to match patients’ values to their treatment choices while applying gentle moral persuasion to reach this goal.

For patients whose capacity is not likely to be questioned, and if the portion of clinician’s fees not reimbursed by insurance would be a burden, another person, such as your agent, can conduct your video interview. Ask for our guide to help this person conduct your interview. Caring Advocates’ semi-structured interview asks patients to: 1) Read the words; 2) Describe what is going on in the illustration; 3) Decide what intervention they want; and 4) Explain why.

Completing Step 4 is designed to accomplish the following: 1) help you avoid prolonged suffering; 2) reduce your loved ones’ anxiety about making the decision you want, which may in turn reduce their subsequent grief; 3) settle the issue about whether you had capacity to make informed decisions; and 4) provide your voice and face to help your agent convince your future treating physician to honor the wishes you expressed in your living will.

Why this Step is Unique

Checking boxes cannot fully reflect your nuanced wishes. Nor do they have the impact of persuasion based on the passion reflected by your face and voice. Recording your interview on video gives you an opportunity to fully express your wishes about what you really want when, and why.

Interim Summary

This completes the first group of tasks, which ideally culminated in a comprehensive, compelling expression of what treatment you want in a living will that has two formats: print and video. The next task is designed to motivate your future physicians to comply with your expressed wishes, and to deter others from sabotaging their orders so you receive what you want.

Some physicians consider living wills to be merely a set of requests that they can consider along with other clinical factors. While in theory, and in law, physicians are obligated to honor your legal requests, in practice, there can be a huge difference between expressing what treatment you want and receiving that treatment. Advance care planning is successful if your agent can persuade your treating physician to promptly honor your requests. Success may depend on implementing one or more of about a dozen strategies. Some are designed to convince your treating physician to write or implement an order; others are designed to deter third parties from sabotaging the orders that your physician wrote. Instead of living with a false sense of security that your living will can suffice by itself, after you have demonstrated your diligence, deliberation, and decision-making capacity in Steps 1 to 4, you can incorporate a relevant set of effective strategies in Step 5.

How it Works

You will receive two PDFs, the Natural Dying Agreement (NDAA) and the Bilateral Durable Power of Attorney for Healthcare Decisions (B-DPOAHCD). They present a set of specific, relevant legal/medical/logistical strategies designed to overcome common challenges to honoring your end-oflife wishes. You can form your Patient Decision Committee whose members must include your agent and all alternates, and can include other individuals whom you choose.

Each prospective Patient Decision Committee member and you can sign a bilateral agreement that includes their four-point promise: 1) to serve as your steadfast, active advocate so others will honor the wishes you expressed your Natural Dying Living Will; 2) to implement any relevant strategy if needed to fulfill your end-of-life goals; 3) to insist your Natural Dying Living Will be followed even if you, as an incapacitated patient, have an “apparent” change of mind to resume assisted feeding after you have reached a condition you judged would cause severe-enough suffering to withdraw assistance with oral feeding; and 4) to allow your behavior to be observed if you are the currently active agent, where other members can meet and vote on replacing you if your efforts are either deemed ineffective (as defined in the Natural Dying Agreement), or if another agent’s background and experience is likely to be more effective situation to convince your treating physician to implement a specific intervention.

All advance care planning documents become legally valid by your swearing/affirming an oath in front of a notary. Strategic Advance Care Planning uses jurats that ask you to state documents are “true, correct, and complete.” Jurats allow judges to admit your documents into evidence if your conflict escalates to court. Ironically, this strategy may prevent a continuing lawsuit. Here’s how: your opponents may appreciate that your Natural Dying Living Will and Natural Dying Agreement strive to be “clear and convincing,” so they fear a judge will rule to honor your wishes and they will lose in court after wasting time, effort, and money. To save face, your opponents may cave by saying, “The patient put in so much effort into expressing their wishes, this must be what they really want.”

Benefits

Examples of challenges in implementing the orders you need and potential sources of sabotage of these orders for which implementing relevant strategies is needed:

You fear one or more of your relatives might try to influence your physician or a judge not to honor your end-of-life wishes based on their different (perhaps religious) beliefs.

The dispatcher for first emergency medical responders transports you to a faith-based hospital whose clinicians or administrators refuse to honor your end-of-life wishes.

The “you” whom you may someday become (your “future demented self”) creates this “classic conflict”: the current, incapacitated version of “you” (your “now-self”) apparently wants assisted feeding to continue, but your past, capacitated “then-self” who completed your Natural Dying Living Will, wants assisted feeding to cease since you reached a condition that you judged would irreversibly cause severe suffering. (I use the term classic conflict since bioethicists have been debating how to resolve it for three decades.)

Third parties claim spoon feeding is not medical treatment, but basic care, which in some jurisdictions is not legal to discontinue. Others may claim that since you open your mouth and swallow what others put in, you changed your mind and revoked your living will. Some state laws do not permit incapacitated patients to refuse life-sustaining treatment—a legal challenge that must be overcome for you to experience a peaceful and timely dying.

Your currently active agent does not advocate effectively for your end-of-life wishes—but is not initially willing to step down to allow a designated alternate to better serve you.

You need psychiatric medications to prevent you from hurting yourself or others, and to relieve your mental anguish—but your physician cannot give you the medication you need until a competent authorized person signs the necessary consent form. Delay causes more suffering.

You want to live where you are until you die. But after your facility administrators learn that your living will requests Natural Dying or Moderate Anesthesia, or that you plan to Voluntarily Stop Eating and Drinking, so they inform you that their risk-management attorneys advised them not to honor such requests.

After you have lost capacity, your future physician can select a legally recognized decisionmaker (surrogate) to consent to the orders in your POLST. But this person either does not know what you want or believes another treatment decision would be in “your best interest.” The person your future physician selects could serve as their rubber stamp. You want a person who knows your values and will advocate for your original requests. No person is more qualified to fill this role than you.

You want total relief from all types of unbearable pain and suffering. But your physician fears others will criticize them for committing “slow euthanasia,” or for not following the American Medical Association’s ethical guideline: “Palliative Sedation is not an appropriate response to suffering that is primarily existential.” But you want relief from all types of severe suffering and to receive adequate sedation/anesthesia if less-sedating treatments have failed.

Many states mandate certain professions to report the suspicion of elder or dependent person abuse. Anyone can submit an anonymous report. Some misguided third parties may believe that withdrawing assisted feeding is neglect or abuse. Some uninformed people may incorrectly allege, “She had been opening her mouth and swallowing, but now they are starving her to death.” You disagree because you prefer a timely dying that takes two weeks—not two years. Furthermore, you want a peaceful dying without the hunger that likely accompanies slow starvation. (Sadly, some advanced dementia patients lose 40% of their weight before they die.) You do not want your end-of-life goals derailed by a report of suspicion that provokes a long investigation that, regardless of the ultimate outcome, prolongs your dying and suffering. You especially do not want a judge to issue a TRO (Temporary Restraining Order) that prevents your loved ones from moving you to a private place (perhaps your home) where you can attain your end-of-life goals.

The legal department of the facility where you reside points out that the statute in your state, or the regulations of Medicare, or the policies of another oversight organization, require them to always offer you food and fluid and they choose to interpret offer as meaning to put food and fluid in your mouth (rather than to place them within your reach).

You reside in a nursing home or memory care unit whose medical director is a member of The Society for Post-Acute and Long-Term Care Medicine (AMDA) and agrees with Policy A19 (although it is now retired). From 2019 to 2023, this policy “recommend[ed] adopting a policy of comfort feeding for all nursing and assisted living facility residents with advanced dementia, despite any advance directives to the contrary. The Society affirms the right of all... residents to receive comfort feeding until their behavior indicates refusal or distress.” (Emphasis added.) Note that refusal and distress are your physicians’ opinions. About 55% of a small survey of AMDA members agreed with this policy. They may still practice it on an individual basis, even though the original policy was retired.

Policy A19 recommended the practice of paternalism because: 1) physicians acted as if they knew what is in your “best interest” better than you could have known, as you completed your advance care planning with adequate counseling when you had capacity; 2) they made this treatment decision for you unilaterally without your knowledge or your consent (since you cannot give consent if you lack DMC); and 3) they were fully aware that both you and your agent expressed the opposite instructions.

Summary

Opposition to orders to cease assisted feeding (Natural Dying) for patients living in advanced dementia is intense and comes from various disciplines. The opposition against Moderate Anesthesia may be greater despite the qualifying requirement of “exceedingly severe suffering.” Clearly, strategies are needed beyond a living will to ensure patients receive the interventions they want and when. Even the best living will is only necessary but not sufficient. This is worth repeating: those who depend on only a living will are likely living with a false sense of security. Success requires proactive, additional effort beyond completing a living will to attain the goal embodied in this slogan:

Plan Now to Die Later—to Live Longer.

Step 6: Complete all POLSTs you may need in the future. Record a short video for each that explains precisely what you want. Choose how you want to let all concerned know which is your current POLST.

How it Works

You want the right forms and videos to accurately inform your physician and first emergency medical personnel responders what you want—before they must implement any orders. You already formed your Patient Decision Committee and instructed each member that their main role is to decide when you would want what orders to be implemented.

This final step includes completing a series of POLSTs with your advance care planning provider or physician that you can memorialize on video, along with a series of short companion videos that can instruct emergency medical personnel and others how to access to all your forms and videos for those concerned. Your choice can vary depending on which POLST is currently active. Examples: if you are physically active, many states require emergency medical personnel to honor a DNR bracelet or pendant. But if you are seriously ill, you can wear your folded ND POLST in a plastic badge attached to a lanyard, so it lies on your chest, along with a unique barcode that links to all your documents and videos when scanned. You can also or alternatively store all forms and videos in a registry that will release the appropriate one only when your currently acting agent authorizes them to do so. In addition to Future POLSTs, you need to store your Natural Dying Living Will (print and long video versions), Natural Dying Agreement and B-DPOAHCD.

POLSTs are sets of immediately actionable orders that all healthcare providers must carry out across treatment settings (unless they claim a moral conflict or allege your request is contrary to accepted medical practice). Using POLSTs make it difficult for future treating physicians to impose additional criteria to honor your living will; that is, to practice paternalism and thereby prevent you from attaining your end-of-life goals.

Benefits

Strategic Advance Care Planning breaks with traditional practice on when to complete POLSTs. Instead of waiting until patients become frail, seriously ill, or terminally ill (for whom it would not be surprising if they died in a year), all POLSTs are completed during advance care planning. The reason not to wait is because by then, you will likely have lost capacity, so your treating physician must ask your agent to consent to your POLST. The problem is that research reveals that agents cannot accurately guess what patients want. Shalowitz et al. (2006) found only 68% agent-patient concordance for making decisions for all diseases. The result for patients who had strokes or dementia was barely better than flipping a coin: 58%.^[8] I argue that physicians have a moral imperative to inform their patients during advance care planning about the serious challenges and obstacles their agents will face — first, in trying to make the right decisions for you, and second, to convince your future physician to implement them.^[9]

You can engage in an expanded strategic POLST Conversation with your physician or health care provider during advance care planning to complete and sign your informed consent to a series of POLSTs that you will eventually need if/as your health deteriorates. For each POLST, you can record a short video that states precisely what treatment you want. Similar videos have been shown to increase the accuracy of first responders’ actions.^[11] Example: your video can feature you demanding, “Do not start an IV. I want no fluid by any route. I am on a total fast of all food and fluid. My goal is a peaceful and timely dying. Even small amounts of fluid will prolong my dying.”

Previously called, “Physician/Provider/Portable Orders for Life-Sustaining Treatment,” POLST forms are widely accepted in almost all U.S. states. A National POLST is recommended in addition to your state’s form, for several reasons. One: it avoids certain inconsistencies in the statutes of some states (including California). Another: if you visit another state, physicians there may be more willing to practice reciprocity if you have a National POLST (although no research has yet been done).

Your future physician cannot select a rubber-stamping “legally recognized decision-maker” if you follow this recommendation: add these two orders to each POLST: 1) “POLST orders must be consistent with patient’s advance directive,” and 2) “No one but the patient can sign a POLST.”

Challenges can occur after implementing the Natural Dying POLST. One is the classic conflict: you reached a condition that you previously judged would cause severe-enough suffering to want assisted feeding to cease, but your “future demented self” indicates the desire for assisted feeding to continue. This strategy is designed to overcome this challenge: during advance care planning, each agent and you sign a bilateral, irrevocable contract that empowers your currently acting agent to override the “apparent” desire expressed by your “future demented self.” If this strategy works, it will prevent the classic conflict from emerging, and then those who oppose Natural Dying cannot use it to justify their paternalism (as AMDA’s ethicists tried to do in their Policy A19):

We (providers) either violate the entire concept of advance directives and practice an injustice against the person as they once were, or we refuse to feed our patient and practice an injustice against who they are now. The provider must recognize this and then choose the injustice that does the least harm.^[10]

Comment: The ethicists’ justification is arrogant, wrong, and illegal. Providers are not responsible for making treatment decisions for you. What is right? To consider the wishes you expressed in living will as durable. Physicians cannot legally make decisions on your behalf. In addition, their argument committed the fallacy of bifurcation: they argued that only two choices are available, so that if one is wrong, the other—which they prefer—must be right. But there are other options. Example: the recommended bilateral contract, a third choice that you and each of your agents can sign whereby your agent promises to uphold your originally expressed requests in your Natural Dying Living Will (if you lose capacity). This strategy is designed to prevent the emergence of the classic conflict and the practice of paternalism upon which it depends, so you need not worry that others will force you to endure unwanted prolonged dying and suffering.

Where do you want to receive Comfort Care?

POLSTs that order less than Full Treatment typically have this conditional order: “Transfer to hospital only if comfort cannot be achieved in current setting.” But you might prefer being transferred to your home, a (designated) hotel, residential hospice, or want your physician to ask the currently acting agent where members of you Patient Decision Committee agree is best. This decision could be critically important if authorities at the institution to which are transferred are not comfortable with your plan to Voluntarily Stop Eating and Drinking, Natural Dying, or Moderate Anesthesia, in which case your dying and suffering could be prolonged.

Why this Step is Unique

The above protocol differs from the traditional protocol in several ways:

POLST conversations are held during advance care planning instead of just before they are implemented.

Your agent is more likely to succeed in persuading your future physician to implement your POLSTs if you and your previous healthcare provider already adequately informed you, discussed them, and signed them, so your future treating physician only needs to implement an already existing POLST.

Strategic Advance Care Planning protocol relieves your treating physicians of evaluating you clinically and of writing and signing your POLST forms de novo. Your future treating physician can stand on the clinical, legal, and moral shoulders of your advance care planning counselor/physician. In medicine, the usual and customary practice is to honor previous physicians’ orders unless a new condition must be considered. Here, the burden of proof in court may be placed on your future treating physicians if they refuse to honor your wishes. This is another reason why the strategy is likely to be effective.

No other advance care planning service recommends a range of ways to inform those concerned how they can access your forms and videos, which depend on which POLST is currently active.

One more innovation

Traditionally, providers and patients signed in person with “wet” signatures and used local notaries for convenience. But you may want to use the advanced security features of digital signatures that exceed the features of the more commonly used electronic signatures. Only Remote Online Notaries offer this feature.

How the two other kinds of signatures differ: Electronic signatures are any mark made by a person electronically with the intent that it constitutes their signature. In contrast, digital signatures require an algorithm that uses personal and public keys contained on a specific device. While the technology of both electronic and digital signatures can validate who signed, only digital signatures can assure that the signed document was not tampered with or modified since it was signed. Caring Advocates adds video recording of the signing visit. This combination of features makes it very hard for others to challenge what you, the person who signed, wanted.

Digital signatures are more secure than traditional, wet signatures. Since orders for Natural Dying and Moderate Anesthesia are controversial, this extra security is warranted. Not only can it prevent fraud, it serves as a testament to the intensity of your motivation—to control what treatment you want to receive when, as your life ends, so your end-of-life goals can be fulfilled.

Finally, this is how you can display your POLST and use a barcode to access all your documents and videos: two examples are illustrated below. If you are up and about, wear a small plastic badge from a lanyard or just keep the business-size card in your wallet or purse. If someday you become seriously ill, you can wear a large plastic badge with your currently active POLST.

Summary

An initial reading of this document may feel overwhelming, but keep these points in mind: First, this document presents you with the entire process; but when you embark on this journey, will learn the details on a “need-to-know” basis. Second, an advance care planning counselor will guide you, each step of the way. Finally, you can determine the pace at which you feel comfortable completing these steps, which can range from a couple of weeks to a few months. In my experience, few if any patients stopped the process once they began, and most felt peace about having at least their Natural Dying Living Will in place so others would know what they wanted.

Note: This overview and the documents to which it refers are works in continual improvement, so they are subject to change. Upgrades are available for those who completed their planning prior to 2024 using specific addenda so there is no need to redo everything.

Website: www.caringadvocates.org

Media: “Living with Advanced Dementia--What is it really like? Feb 4, 2017.” This is a 14-minute glimpse of why many lay and professional people consider Advanced Dementia to be the cruelest, most burdensome, and most prolonged of any terminal illness for patients, loved ones, and caregivers: youtu.be/jnZOLOliDwQ

Companion program: If you are concerned about a relative who has already reached a stage of advanced dementia but who has an ineffective—or no—living will, you can learn about our other protocol, Now Care Planning, at https://caringadvocates.org/ncp.php and begin your efforts at www.tinyurl.com/NowCarePlanning.

Citations

1. Terman, S. A. (2022). Timely dying in dementia: Development of an illustrated, comprehensive living will that requires only a third-grade level of reading. Preprint available: SSRN. http://dx.doi.org/10.2139/ssrn.4720022
2. Terman, S. A, Steinberg, K. E, & Hinerman, N. P. (2024). Timely dying in dementia: Use patients’ judgments and broaden the concept of suffering. Alzheimer's Dementia, e12527. doi:10.1002/dad2.12527
3. Terman, S. A, Steinberg, K. E, & Hinerman, N. P. (2022). Flaws in advance directives that request withdrawing assisted feeding in late-stage dementia may cause premature or prolonged dying. BMC Medical Ethics, 23(1),100. https://doi.org/10.1186/s12910-022-00831-7
4. Terman, S. A. (2024). Can an effective end-of-life intervention for advanced dementia be viewed as moral? Alzheimer's Dementia, e12528. doi:10.1002/dad2.12528
5. Cantor, N. L. (2018). On avoiding deep dementia. Hastings Center Report, 48(4),15-24.
6. “Why I Changed My Mind—From Natural Dying to Treat & Feed—for Certain Symptoms of Advanced Dementia” (2012). youtu.be/qA0TQS1Pmwk
7. Emanuel, E. J., & Emanuel, L. L. (1992). Four models of the physician-patient relationship. Journal of the American Medical Association, 267(16), 2221-2226.
8. Shalowitz, D. I, Garrett-Mayer, E., & Wendler, D. (2006). The accuracy of surrogate decision makers: A systematic review. Archives of Internal Medicine, 166(5), 493-497
9. Terman, S. A. (2022-2024). A moral imperative for providers during advance care planning for dementia: Inform patients that accuracy in surrogate decision-making and advocating conforming orders be implemented are formidable challenges. Preprint at SSRN. http://dx.doi.org/10.2139/ssrn.4175688
10. Ethics Committee of AMDA. (2019). Resolution A19: Stopping Eating and Drinking by Advance Directives (SED by AD) in the ALF and PALTC Setting. https://bit.ly/2VdDyV4
11. Mirarchi, F., Cooney, T., Venkat, A., Wang, D., Pope, T., Terman, S., et al. (2017). TRIAD VIII: Nationwide multicenter evaluation to determine whether patient video testimonials can safely help ensure appropriate critical versus end-of-life care. Journal of Patient Safety, 13, 51–61. https://ssrn.com/abstract=2988140