Six Steps to Strategic Advance Care Planning

The goal of Strategic Advance Care Planning is to complete a plan in which you have confidence, so that if someday, your disease causes you to lose the ability to speak for yourself, your future physician and others will honor your previously expressed requests. This protocol is for those who want to control the last chapter of their lives; to experience a private, peaceful, and timely dying; and to avoid prolonged dying if it is associated with severe suffering. This "belts and suspenders" approach to making sure others will honor your end-of-life wishes can give you enough confidence that you will not need to think about ending your life prematurely as the "only certain way" to accomplish these goals. That is the benefit of being effectively proactive if someday, you face the challenge of advanced dementia or a similar challenge. This slogan reflects this approach: Plan Now to Die Later—to Live Longer.

Steps 1 to 4 let you clearly, specifically, and comprehensively state what treatments you prefer—that is, what you want—if you reach a condition that prevents you from currently expressing yourself.

Step 5 adds strategies to motivate your future physician to implement the orders you stated you need to end your life peacefully and timely, and to prevent others from sabotaging this goal.

Step 6 actualizes your requests, by turning them into physician’s/provider’s orders that laws or usual medical practice compel other healthcare providers to honor them. The forms used have the power of physicians’ orders: POLST (Portable Provider Orders for Life-Sustaining Treatment). An optional part of this step is to store all your forms and videos in a registry, to make them readily available to members of your Patient Decision Committee (your currently acting proxy/agent, alternatives, and others you trust), loved ones, and healthcare providers.

Step 1: Complete your initial Natural Dying Living Will.

How it works:

Step 1 uses My Way Cards, an online patient-decision aid to generate your Natural Dying Living Will. Each of the 50 cards describes one end-of-life or advanced-dementia condition. Each has easy-to-understand words and illustrations. All these conditions together strive to comprehensively reflect what people dread most about being forced to endure prolonged dying in advanced dementia and other terminal illnesses. Describing conditions behaviorally reduces potential conflict over the correct diagnosis; reflects what people care more about most, which are losses of function and unwanted behaviors; and appreciates similar behaviors can result from various diseases. Example: someone who cannot respond at all to other human beings could have any of these diagnoses: advanced dementia, amyotrophic lateral sclerosis (ALS), stroke, or persistent vegetative state. The two most relevant questions do not depend on the diagnosis, however: can your condition improve, and will it cause irreversible severe suffering to you and/or your loved ones?

You can use your computer, tablet, or cellphone to complete Step 1. Infrequently, some people need a printed version.

You will be asked to answer this question for each condition, as if it were the only condition: "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 can decide on cardiopulmonary resuscitation (CPR) with Full Treatment. But if you depend on a caregiver to feed and hydrate you, and you still enjoy life, you can choose CPRL, which means only one Full CPR attempt, and if it is successful, then Selective/ Limited Treatment so you will not be subjected to burdensome, invasive treatment with a DNR order so you do receive no further CPR attempts.

If your answer is, "Yes, I judge suffering from this condition would be severe enough," your physician can implement orders for Natural Dying that can be clinically effective to allow you to have a timely dying–even if you have "No Plug to Pull;" that is, if sustaining your life does not depend on receiving high-tech medical treatment since you only need to receive spoon feeding.

Using one criterion–the condition causes severe suffering–is more compelling and specific than criteria included in most traditional and new "dementia directives." Example: asking, "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 too vague, and worse, could lead to judging the lives of others are not worth living. Selecting a substage from the Functional Assessment Staging Tool (FAST) set of criteria has a significant and underappreciated problem: this tool was not designed for making treatment decisions, but for research. A living will that is based on reaching a clinical condition may be flawed and lead to premature dying. Example: your condition is "inability to recall the names or genetic relationships of your close family members," yet all of you still enjoy spending time together; so the suffering is none or mild and if you were allowed to die, the timing would be premature.

Natural Dying strives for wide acceptance. It does not demand withholding food and fluid. It only withdraws assistance by caregiving hands that feed and hydrate. Its second physician order is critically important to avoid criticism: "Always place food and fluid in front of the patient and within his or her reach." Natural Dying strives to be clinically appropriate, legal, ethical, moral, and to be consistent with the teachings of major religions. No matter how easy and fast a living will can be to complete, if it is not both effective and acceptable, then it will not serve its purpose when the time comes to implement your wishes; it will fail the ultimate criterion: to provide goal-concordant care.

A greater challenge for hundreds of thousands of patients living with advanced dementia is living in the Dementia Gap (which the illustration on the below defines). These patients are in this clinical situation: they are suffering but can still independently eat and drink, so Natural Dying is not possible. The critical question is: What kind of treatment can relieve these patients from suffering?

Moderate Anesthesia is an optional intervention you can select as you judge how much suffering each condition of the My Way Cards would cause. If you are in the Dementia Gap and you have two or more conditions causing exceedingly severe suffering, then moderate anesthesia can reduce either your suffering, or your awareness of suffering. A possible, but unintended side-effect, is the risk of earlier dying. Yet you will be asked to consent to being awakened after about four days so you can be given the opportunity to answer this key question: "Has the rest has allowed you to regain enough strength, so you want to continue to live and be awake?" Waking and asking this question does not apply to patients who lacked the ability to answer before the intervention such as patients living in advanced dementia. "Moderate Anesthesia" is a new term with a new definition. The level of sedation is a bit less than during endoscopy so that no IVs or respiratory assistance is needed. (The term palliative sedation to unconsciousness has become tainted based on how some professionals used or viewed it.) Moderate anesthesia is 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 doses of medication you will receive are titrated to reduce your suffering; they are never intended to hasten your dying, which would be euthanasia.

The definition:

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 and lets you express what intervention you want and when, based on your lifelong values.

Memorializes your wishes to inform your future physicians and others.

Reduces your proxies/agents' emotional burden since they will be following your decisions, not making life-or-death decisions on your behalf. Proxies'/agents' main role is to serve as your advocate to persuade your treating physician/provider and others to honor your treatment decisions. They will asked to exercise their "substituted judgment" only if your living will is not clear or does not include the condition you reached. Then, your proxies/agents will take into consideration your current condition and future prognosis, and knowing you well, strive to make the same decision you would have made, based on your lifelong values and general treatment preferences.

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 used as your only living will; it is not merely an addendum. Since the descriptions of the conditions are illustrated and written at the third-grade level of reading comprehension, many early-stage dementia patients who have experienced a decrease in cognitive functioning can use it to express their end-of-life wishes (while they would not understand other living wills).

The Natural Dying Living Will broadens the concept of suffering to 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 total social isolation due to losing the ability to communicate; 4) disruption of life narrative (roles in one's family, career, and society); 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. Clearly, many sources of suffering cannot be observed by currently assessing the patient.

The Natural Dying Living Will provides a way for your future physicians to answer the "when" question" so they do not need to assess your contemporaneous suffering. To determine if "that time" has come, your physician/provider only needs to answer, "Has my patient met the clinical criteria of a condition that s/he previously judged would cause severe enough suffering?"

Note: Some physicians consider living wills to be merely a set of requests that they can consider along with other clinical factors. In theory, and in law, physicians are obligated to honor your legal requests. But in practice, there can be a huge difference between stating what you want and obtaining what you want. Advance care planning is successful if your proxy/agent can persuade your treating physician to promptly honor your requests. Success depends on over a dozen strategies. Some are designed to convince your treating physician; others are designed to deter others from sabotaging your physician's orders. Instead of living with a false sense of security that any living will can suffice, you can demonstrate your diligence, deliberation, and decision-making capacity in Step 1, and incorporate a relevant set of effective strategies in Step 2.

Step 2: Discuss your initial draft with an advance care planning counselor.

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 advance care planning counselor by phone or by Zoom. Your responses should be consistent with each other and with generally accepted medical practice. Example: if you asked for Natural Dying if you lost your ability to read a newspaper or 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 who can still enjoy simple pleasures of life. It may also be illegal and immoral. Yet a famous attorney published his own living will that made this exact request.

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?

Step 2 usually leads to revising some decisions. The process can demonstrate that your decisions were diligent, deliberative, and consistent over time. Also, if you explain why you made certain changes after further discussion, others are more likely to honor your well-thought-out decisions.

Why this Step is Unique

We know of no other advance care planning service that offers critical comments and the opportunity to discuss your initial responses, so you can diligently and deliberatively revise. Caring Advocates has over a decade of experience helping patients consider their advance treatment decisions for their future incapacitated selves. By the end of Step 2, most people will have made the changes they feel are important and feel at peace that their living wills reflect what they really want.

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

Step 3: Use your decisions in your Final Natural Dying Living Will to complete and memorialized your oral testimony on video.

How it Works

Consider two PDFs you will receive by email to review and make any further needed changes. This will be your "Final Natural Dying Living Will," although as long as you have capacity, you can still change them if you wish. There are two versions: one is in the sequence that you made your decisions, which makes it convenient to compare your initial and final responses ("By Condition"). You will follow the same sequence as you will record on video for the oral testimony of your living will. The other version is clinically logical: it begins with conditions causing exceedingly severe suffering, then severe suffering, then moderate suffering, and finally no or mild suffering. This format ("By Category") makes it easy for your future treating physician/ provider to decide what intervention is most appropriate for your current condition.

You will also receive two optional forms: "Do Not Force Feed Me" and "Do Not Give Me Pureed Food and Thickened Liquids." Two qualified witnesses can make your living will legally valid, but a Remote Online Notary is recommended she they can provide advanced security features (A) to verify your identity and (B) to validate that no one modified your documents since you signed.

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 considerations (which you can explain in your own words in the video that you make in Step 4).

In the document Your Final Natural Dying Living Will also include a strategy to motivate future physicians to honor your wishes. It warns healthcare providers that they risk losing their legal immunity, so they become liable to being sued if they ignore your known end-of-life wishes.

Why this Step is Unique

Other organizations do not encourage patients to revisit the advance treatment decisions they made three or more times. Actually, most other advance directives require only a few checkmarks, initials, or a final signature to memorialize these existentially important choices.

Step 4: A video interview with a trained clinical lets you record your oral testimony and explain why you made each treatment decision. You can also add further guidance to your proxies/agents, and personal details and nuances. You can also demonstrate your "decision-making capacity."

How it Works

Your interview can be recorded online using our HIPAA-compliant internet video (or in person, if you prefer). We will send you the video that is stored in the cloud, or if you prefer, on a thumb drive. Many patients ask us to upload the video to YouTube with their privacy settings or store it on their own server or a national registry. Once stored, you need only share the link with all those concerned, and you will not need to send them subsequent revisions, since the cloud-based version will always be the most current.

Benefits

Step 4 presents your own voice and face to inform others exactly what you have decided: what treatment decision do you want for each condition described in your Final Natural Dying Living Will. Your presentation has two audiences. One is your loved ones to help them feel at peace with your end-of-life decisions (that you—not they—made). The other is your future physician in hopes of convincing him or her to comply with your requests. If anyone questions if you had capacity or why you made these decisions, they can view your video, which will include your interviewer's opinion that you possessed capacity at the time it was made. Capacity means 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 that includes a trained clinician to interview them is especially needed by patients who have a diagnosis that typically affects thinking, memory, or judgment. Examples: mild cognitive impairment, early dementia, brain trauma, brain tumors, high doses of pain medications, and end-stage liver or kidney failure. Your interviewing clinician will express and record (on video) his or her opinion about your capacity as part of your medical record. This carries far more clinical and legal weight than the opinions of contemporaneously non-professional witnesses (e.g., friends) who affirmed, "Your mind was sound," which many state laws permit but is not recommended for controversial requests.

Caring Advocates' clinicians are trained to conduct interviews for advance informed consent by using the collaborative, deliberative, respectful approach described well by the Emanuels in their 1992 Journal of the American Medical Association (JAMA) article (267(16):2221. One physician-patient model is "deliberative." It focuses on matching patients' values to their treatment choices as the interviewing counselor applies gentle moral persuasion to reach this goal. This video recording uses a semi-structured interview. This protocol is designed to avoid future conflicts.

The approach ends with physicians ultimately accepting what the patient decides. Healthcare insurance may pay the professional fee, in part. However, you can ask another person, such as your proxy/agent, to conduct your video interview (for example, if funds are limited). If this is your choice, we can provide a written guide to help this person conduct your interview.

Completing Step 4 can 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 proxy/agent convince your treating physician/provider to honor your living will.

Why this Step is Unique

Checking boxes cannot fully reflect your nuanced wishes. Recording your video gives you an opportunity to fully express your wishes about what you really want when, and why. Checkboxes do not have the impact of persuasion or the passion in your own face and voice.

Caring Advocates has over a decade of experience in combining the semi-structured interview with the deliberative, patient-clinician approach, which has helped many people do their best to express their decisions that are memorialized on video.

Step 5: Strategies to motivate your physician to write the orders you need, and other strategies to prevent anyone from sabotaging your plan.

How it Works

We send you a PDF entitled the Natural Dying Agreement, Summary Affidavit, and Durable Power of Attorney for Healthcare Decisions. It presents a set of specific, relevant legal/medical/logistical strategies designed to overcome common challenges to honoring your end-of-life wishes. Your task is to share these documents (or at least, relevant portions) with individuals who may become your proxy/agent or alternates and other voting members of your Patient Decision Committee (PDC).

You and each individual who may become your designated proxy/agent or alternate can sign a bilateral contract. Each must agree (promise) 1) to serve as your steadfast, active advocate so others will honor 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, "apparently" has a change of mind to resume assisted feeding after you met the conditions for withdrawing assistance, 4) to observe the behavior if the currently active proxy/agent and meet to replace him/her if his/her efforts are deemed ineffective (as defined in the Natural Dying Agreement), or if another proxy/agent has a background that might be more effective in your current situation to convince your treating physician/provider that the time has come to implement a specific intervention.

The "Natural Dying Agreement, Summary Affidavit, and Durable Power of Attorney for Healthcare Decisions" lets you swear in front of a notary that your declaration is "true, correct, and complete." This jurat makes it possible for judges to admit the Natural Dying Affidavit into evidence if your conflict escalates to court. Ironically, this strategy may prevent a lawsuit if your opponents realize that your living will and affidavit are clear and convincing, they may fear a judge will rule to honor your wishes, and they will lose if they go to court after wasting time, effort, and money. Sometimes, opponents cave in by saying something like, "The patient put in so much effort into expressing his/her wishes, so this must be what s/he really wants."

Benefits

Below are examples of challenges to implementing the orders you need and potential sources of sabotage. Some occur before, and others occur after, you have reached a condition you had previously judged would cause severe enough suffering to want others to implement the orders for Natural Dying or Moderate Anesthesia, so you can be allowed to die of your underlying disease:

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.

You are transported to a hospital that is a faith-based institution whose clinicians and/or administrators refuse to honor your end-of-life wishes.

The "you" whom you may someday become (your "future demented self") opposes your previous wishes, creating a conflict between this incapacitated "you" (your "now-self") and your past, capacitated "you" who completed your Natural Dying Living Will (your "then-self"). For example, a third party claims 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. The law does not permit incapacitated patients from refusing life-sustaining treatment. This challenge must be overcome to experience a peaceful and timely dying.

Your currently active proxy/agent does not advocate effectively for your end-of-life wishes, but will not step down to allow a designated alternate to better serve you. The Natural Dying Agreement can avoid the need to petition a court to replace your currently active proxy/agent, which process can take some time and be expensive.

You need psychiatric medications to prevent you from hurting yourself or others, or to relieve your mental anguish. However, your physician cannot give you the needed medication 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 facility administrators learn that your living will requests Natural Dying—or that you might hasten your dying by voluntarily stopping eating and drinking—they inform you that their risk-management attorneys advised them not to honor such requests.

After you have lost capacity, your future physician selects a legally recognized decision-maker (a surrogate) to consent to the orders in your POLST. But this person, whom your physician can select, either does not know what you want, or believes another treatment decision would (in their opinion) be in "your best interest." This person your future physician selects could be his/her rubber stamp. What do you want? Someone who knows your values and will advocate for your original requests. Answer this (trick) question: Who is the most qualified person to fill this role? (Hint: look in the mirror.)

You want total relief from all types of unbearable pain and suffering. But your physician fears others will criticize him/her for committing "slow euthanasia," or for not following this ethical guideline published by the American Medical Association: "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 treatment has been tried but failed to provide you relief.

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 say, "She had been opening her mouth and swallowing, but now she is starving to death." You disagree because you prefer a timely dying—one that takes two weeks, not two years and that is peaceful—without hunger, which medical dehydration can provide. You do not want to die by slow starvation. Some advanced dementia patients lose 40 to 50 percent of their weight before they die. No one knows how much they suffered. These are some reasons why you do not want your end-of-life goals derailed by a report of suspicion that provokes a long investigation that in turn prolongs your dying and suffering.

Comment: Even if a judge eventually rules your wishes should be honored, your goal—a timely dying—will have been delayed as you suffered. At worse, the option of your loved ones taking you home where you can attain your end-of-life goal in private may not be possible if a court, in response to a petition by an administrator or clinician, issues a TRO (Temporary Restraining Order).

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 other oversight organizations—require them to always offer you food and fluid, which they interpret means putting food and fluid in your mouth; hence a conflict could arise that focuses on the word "offer."

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). This national organization includes over 5,000 physicians and advanced practice practitioners who provide direct clinical care for residential patients. They are widely considered thought leaders in treating advanced dementia patients. From 2019 to 2023, AMDA adopted Policy A19 that "recommends 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 post-acute and long-term care residents to receive comfort feeding until their behavior indicates refusal or distress." (Emphasis added to "all"; original emphasis otherwise—but note this: refusal or distress is in the opinion of the physician/provider.) While A19 was being considered for rescinding, an independent survey revealed that as many as 55% of their members agree with this policy. Some may still practice it on an individual basis.

Physicians who followed Policy A19 recommendations were practicing paternalism. Here's why: 1) their actions indicated that they believe they know 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 lacked capacity at the time they made this decision on your behalf. (Also, another section of A19 recommended physicians not ask your proxy/agent for his/her substituted judgment), and 3) they knew your living will requests were "to the contrary."

Summary: Opposition to orders that request assisted feeding cease for patients living in advanced dementia is intense and comes from various disciplines. The opposition against moderate anesthesia may be greater. Yet rarely do authors of living wills specifically ask planning principals to go beyond expressing their requests clearly and specifically for what interventions they want and when; that is, they rarely recommend implementing a set of strategies that may be needed for success. Those who believe that all they need is a clear living will may be living with a false sense of security if they reach an advanced stage of dementia. Many future physicians will not honor their patients' wishes.

In the real world of medicine, the difference between a weak request versus a compelling demand is the difference between unwanted prolongation of suffering without any benefit (since you may not be able to enjoy living) versus being allowed to die how and when you want based on your lifelong values that include wanting to avoid prolonged suffering. Even the best living will is only necessary but not sufficient: a good beginning, but by itself, not sufficient to attain success. A set of strategies must be added that are designed to effectively compel your future physician and others to honor your wishes. If this task is successful, you can live as long as you want and enjoy life after you lose capacity, but still attain your end-of-life goal. The required proactive, additional effort beyond completing a living will is embodied in the words of this slogan:

Plan Now to Die Later—to Live Longer.

Step 6: Complete all POLST forms and videos during advance care planning. Consider using a registry that agrees to facilitate your strategic plan to prevent common challenges from emerging.

How it Works

During advance care planning, have a strategic POLST conversation with your physician or health care provider that results in completing and signing your informed consent to all the POLSTs you will eventually need if your health deteriorates. Previously called, "Physician/Provider/Portable Orders for Life-Sustaining Treatment," these forms are widely accepted in almost all American states. A "National POLST" has several advantages. You can store all forms and videos in a registry so they can be readily downloaded. Choose a registry that agrees to release POLSTs only if the currently legal, acting proxy/agent requests, which will happen only if the members of your Patient Decision Committee agree that time has come.

Since you will have signed every POLST, your future physician cannot select a rubber-stamping "legally recognized decision-maker." Instead, each POLST can include these two instructions or orders: "POLST orders must be consistent with patient’s advance directive," and "No one but the patient can sign a POLST."

Among your POLSTs are one for Natural Dying, one for Moderate Anesthesia, and another for Voluntarily Stopping Eating and Drinking. (The last provides insurance.) Your proxy/agent is more likely to succeed in persuading your future physician to implement these POLSTs if you and your previous healthcare provider already discussed and signed them, so all your future treating physician/provider needs to do is to implement an already existing POLST; they do not have to evaluate you clinically and then write and sign a POLST de novo. In medicine, the usual and customary practice is to honor previous orders unless a new condition must be considered. But, if your future physician refuses to implement the POLST you signed during advance care planning, then the burden of proof in court is placed on your future treating physician who refused to honor your wishes, which helps make the strategy effective.

POLSTs are a set of immediately actionable orders that all healthcare providers must carry out across treatment settings.* Thus, your future treating physician cannot impose additional criteria after implementing these orders (such as wait until you manifest refusal or distress).
          * Two uncommon exceptions are conflict with conscience and contrary to general practice standards.

Challenges can occur after, as well as before, implementing the Natural Dying POLST. One that commonly occurs after can be referred to as the classic conflict since bioethicists have been seeking to resolve it for three decades. Here is how the classic conflict can emerge: you reach a condition that you previously judged would cause severe enough suffering for which your living will requested assisted feeding to cease. But your "future demented self" indicates the desire for assisted feeding to continue.

The strategy: During advance care planning, each of your proxies/agents and you sign a bilateral, irrevocable contract that empowers your currently acting proxy/agent to override the "apparent" desire expressed by your "future demented self." This strategy is designed to prevent the classic conflict from emerging, and if does not emerge, then those who oppose Natural Dying cannot use it to justify their paternalism (as AMDA’s ethicists did for 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.

What is wrong with this policy statement? It arrogantly and incorrectly presumes that providers are the authorities responsible for making this existential decision on your behalf, which is illegal and unethical as well as presumptuous. Another reason is the fallacy of bifurcation: They argue only two choices are available, where there are really more. In this case, an existing bilateral contract where the proxy/agent has promised to uphold the patient’s original requests, as expressed in the Natural Dying Living Will.

The recommended strategy is designed to prevent the classic conflict from emerging and to prevent this practice of paternalism, so you will not be forced to endure unwanted, prolonged dying and suffering.

One way clinicians and others can learn about your specific end-of-life wishes is for you to join the national registry, MyLastWishes.org. You will receive a laminated, business sized MyWCard. It has a barcode that clinicians and others can scan to retrieve your forms and videos. Other copies of this barcode can be affixed to your POLST form(s), driver’s license, healthcare insurance card, etc. Clinicians can also retrieve your forms and videos using a computer.

You record a short video—for several conditions of your present and future health—on which you inform emergency first responders precisely what you want. Your first POLST can be the default of Full Treatment with CPR. Your next POLST will likely be Do Not Attempt to Resuscitate (DNAR)—a decision most people make before they lose capacity. Some of the other POLSTs include Selective/Limited Treatment; Comfort-focused Treatment with assisted feeding; Comfort-focused Treatment without assisted feeding (Natural Dying); and Moderate Anesthesia. Another POLST can be decide by your future physician: to withhold all food and fluid if you are risk for aspiration pneumonia.

Scanning the barcode can automatically play your appropriate POLST video. Similar videos have been shown to improve the accuracy of emergency medical personnel’s responses. You can also include important nuances and explanations. For example, to prevent emergency medical personnel from their routine practice of starting an IV, your short video can state, "Do not start an IV. I want no fluid by any route. I am on a total fast of all food and fluid since my goal is a peaceful and timely dying. Even small amounts of fluid will prolong my dying."

POLSTs that order less than Full Treatment usually have the conditional order to transport to hospital if comfort care needs cannot be met in the current setting. But another option can replace this usual order: "Transport to home." That may be preferred if the institution is leery of Natural Dying or Moderate Anesthesia when that time has come.

Benefits–How it Works

A relevant fact: the best forms, videos, and strategies can serve you only if emergency medical personnel and physicians can access them before providing treatment. Step 6 strives to make this possible. You can keep your MyWCard in your wallet in case of an emergency. If you become seriously ill, wear the card along with a POLST in a plastic badge holder attached to a lanyard. If your state legally requires clinicians to respond to engraved messages on medallions (dog tags) by approved vendors, add a medallion to your lanyard. (Note: you may not need these features if you are bed bound or if your medical chart is in your residential facility or home.)

Why this Step is Unique

The above protocol differs from the traditional protocol in several ways. POLST conversations are usually held contemporaneously, just before being implemented. But if you want to discuss the most important and controversial, life determining POLSTs when you still have capacity, then have the POLST Conversations and sign all the "Future POLST" forms yourself–during advance care planning.

Most POLST conversations result in completing state-specific forms. But you may choose a National POLST based on its advantages. Many patients have both forms.

Traditionally, providers and patients signed in person with "wet" signatures. But you may want to use the advanced security features of digital signatures that exceed the features of the more commonly used electronic signatures. This is how they 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 assure that what was signed—the document itself—was not changed. Caring Advocates also adds video signing, which is hard to challenge.

Arguably, digital signatures are more secure than traditional, wet signatures. Since the orders for Natural Dying and Moderate Anesthesia are controversial, the extra security that digital signatures and video signing provide is warranted.

More information

Website: www.caringadvocates.org

VIDEO: "Living with Advanced Dementia--What is it really like? Feb 4, 2017" A 14–minute glimpse of why Advanced Dementia is considered among the most cruel, most burdensome, and most prolonged of any terminal illness—for patients, loved ones, and caregivers. youtu.be/jnZOLOliDwQ

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 (and even begin) our other protocol, Now Care Planning, at www.tinyurl.com/NowCarePlanning.


© 2024 Stanley A. Terman, PhD, MD
www.caringadvocates.org
DrTerman@CaringAdvocates.org
800-64-PEACE; text 760 704 7524
FAX: 888-767-6322
Caring Advocates; 45 Bulkley St, #4; Sausalito, CA 94965