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."
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.