Following is my Supplemental Directive. I do not consider it to be superior to any other, nor do I suggest that anyone copy it, though everyone is welcome to use any of it that suits their needs. I offer it merely as an example of what can be done. Referring to posts 1 through 3 on this topic should clarify the reasons for my choices. You will judge how well I have resolved the issues. I welcome ideas, critiques, and comments to improve my efforts.
A SUPPLEMENTAL DIRECTIVE BY LAMAR W. HANKINS TO MY FAMILY, PHYSICIAN(S), CARETAKERS, AND MEDICAL AGENT CONCERNING A GOOD DEATH
This Supplemental Directive is intended to assure that if I am not quickly dying from other causes described below, my possible future demented or incapacitated self receive no nutrition or hydration, natural or artificial; and that in such a circumstance, I be given palliative care sufficient to prevent my suffering, even if it hastens my death. The following terms, conditions, definitions, and directions are aimed at achieving this goal and are mandatory instructions.
INTRODUCTION. I have tried to lead a good life and, like all generally rational people, I hope for a good death when I can no longer live my life the way I want to. When my death comes, I hope that it will be swift, without excessive pain, and peaceful, and that those I love will be with me so that we can say our good-byes and so I can receive their support, preferably in a comfortable and familiar environment. I know that not all goes as we wish or as we plan, so I have set down this statement in the hope that doing so will enable me to achieve a good death. I make this Supplemental Directive at a time when I am mentally competent and after much study and thought. I executed a version of this directive in 2000 and have revised it several times, most recently in October 2017.
RELATED ADVANCE DIRECTIVES. The statutory Texas Directive to Physicians and Family or Surrogates I have executed makes clear that, should I have a terminal condition or an irreversible condition, I do not want to receive life-sustaining procedures that will serve only to prolong my dying. This situation is relatively easy to manage in comparison to other physical or mental conditions that would rob me of dignity, mental capacity, and all that is meaningful to my life. For this reason, I have executed a Medical Decisions Worksheet, which is attached to my Directive to Physicians. I direct that that document be honored. If a conflict arises between any of these documents, I direct that this Supplemental Directive should control.
OTHER MEDICAL CONCERNS. Still, there are two other types of debilitating conditions that would keep me from continuing to live a good life and to have a good death. One is irreversible loss of normal mental functioning caused by Alzheimer’s or another form of dementia, or by any event that makes me incapable of ending my own life because of mental incapacity (“my future demented self”); the other is the irreversible loss of the physical ability to personally end my life (“incapacitated” or “irreversibly incapacitated”), should I be mentally competent but unable live a good life or have a good death, such as could occur with stroke, for example.
In either of these two situations, after the conditions described above have been confirmed by a physician, I would need the cooperation of care-givers and my medical agent, but I do not want to endanger anyone or cause them to suffer prosecution by the government for cooperating in ending my life. To this end, I have formulated the following guidelines and a directive regarding food and hydration, which I hope will enable my family, friends, and medical agent to help me achieve a good death without the danger of criminal sanction. The directions to my caregivers in this Supplemental Directive should not be considered by any authority as assisting in my death under any assisted suicide law. I consider that the directives in this instrument are merely instructions to allow me to hasten the moment of my death from natural causes and do not require actions by anyone. To the contrary, what is required is inaction.
DEFINITION. By “normal mental functioning,” I mean the ability (1) to read and understand a major daily newspaper, (2) to make meaningful choices about the foods I consume, (3) to recognize and identify my immediate family members (spouse, daughter, granddaughter), (4) to enter into contracts, and (5) to write with comprehension. The loss of three or more of these abilities will trigger this Supplemental Directive with respect to dementia. It will be in effect with regard to irreversible incapacity at the onset of that condition.
PRELIMINARY RESPONSES TO DEMENTIA OR IRREVERSIBLE INCAPACITY. If the directions in my statutory Directive to Physicians and Medical Decisions Worksheet for my possibly future demented self do not result in my death, the following expansion on them should provide further guidance and direction. If my future demented or irreversibly incapacitated self develops a serious malady, such as kidney disease, lethal cancer, or congestive heart failure, I reject receiving curative medical treatments; these maladies, with the best of palliative care to diminish or prevent physical suffering, should suffice to provide the death that I desire. I reject, also, simpler treatment, such as antibiotics, antiarrhythmics, and artificial nutrition and hydration. I expect that infection will occur early via the urinary tract, skin, or pneumonia, and that this condition, left untreated, would precipitate my death. To be clear, my directive is to receive palliative care, but not curative measures in any such case.
GUIDELINES AND PROCEDURES FOR A GOOD DEATH FOR MY FUTURE DEMENTED OR IRREVERSIBLY INCAPACITATED SELF:
1. Should previously-noted directives and instructions not result in my imminent death after irreversibly losing normal mental functioning or physical capacity, the best and legally safest course of action is to prohibit anyone from feeding or hydrating me, or providing artificial nutrition and hydration. With appropriate palliative care, I should be able to die relatively peacefully and without discomfort. I consider providing nutrition and hydration, whether natural (such as by hand-feeding) or artificial, to be medical treatments or therapy under the circumstances described in this directive, and I have determined that they are not acceptable treatments or therapy for me under the circumstances I describe above.
2. If I cannot feed myself after becoming demented or irreversibly incapacitated, I consider hand-feeding in violation of this directive to be a battery, prohibited by common law and the law of torts, and it is unacceptable to me.
3. I want to receive the best palliative care. If my condition becomes painful at any time during the course I have described above; if it causes me discomfort (including stiffening or grimacing spontaneously); if I become confused and agitated, have hallucinations, or experience delirium; if I suffer dyspnea, or have unrelenting, persistent, unacceptable symptoms, such as extreme fatigue, weakness, or debility; or if I have seizures – I want to receive palliative care, including terminal sedation if necessary, sufficient to eliminate these symptoms, even if the palliative care hastens my death.
4. Although these instructions may require finding a cooperative physician if the physician-in-charge will not honor my wishes, these procedures should be possible to implement with minimal conflict and difficulty. No one is taking any action to cause my death. Instead, they are honoring my directive not to provide me with nutrition and hydration.
5. I welcome receiving hospice care during this period of dying, so long as hospice is committed to carrying out my directions.
6. No one should need to do anything except assure that my wishes to receive no ordinary nutrition or hydration, or artificial nutrition or hydration, are honored. If I am mentally competent and able to communicate my wishes by some reliable means, I should be asked only whether I want to have this directive carried out. The details should not be discussed with me.
7. No one may decide that I have revoked any part of, or the totality of, this Supplemental Directive unless it is clear beyond any doubt or equivocation that I have done so while still capable of making a considered choice, including understanding all of the complexities involving such a choice. None of my decision-making agents may ignore or alter this Supplemental Directive in deference to my incompetent or incapacitated self, no matter how content that self may be or seem to be.
DIRECTIONS REGARDING NUTRITION AND HYDRATION: To assist me with carrying out these wishes under the circumstances described above, I direct that no one be permitted to offer me food or liquids, or artificial nutrition or hydration by medical means, unless I clearly and unambiguously request it; nor may anyone bring food into my presence or within range of my ability to smell it or see it. I must not be cajoled, harassed, or in any way encouraged or impelled to eat or drink. Opening my mouth in a way that may be interpreted as asking for food or drink shall not be used as evidence that I want either.
Palliative measures are welcome and essential for my comfort. For example, the use of cracked ice to relieve any dryness around my lips and mouth is acceptable care, as are other treatments for such dryness. I want to receive the best oral and nasal care available. If I am able to swallow, and taking medication by mouth is appropriate and necessary for my comfort, I may take fluids only as are necessary for the administration of the medication. However, my ability to swallow shall not be used as evidence that I want food or fluids. Oxygen may be used as a comfort care measure, along with other comfort care procedures that do not serve merely to prolong my life.
As should be clear, I have no desire to subject my future incompetent or incapacitated self to a torturous or agonizing dying process and ask for adherence to humane treatment in keeping with the terms, conditions, definitions, and directions of this Supplemental Directive.
_________________________________________
Lamar W. Hankins Date
SIGNATURE ACKNOWLEDGED BEFORE NOTARY
Thanks for this well thought out and comprehensive approach to dealing with this difficult and all too common problem. As these provisions become incorporated into Advanced Directives, we will gain experience in the medical community/institutional response. For those who become aware of actual situations where these directives are not followed, contact Final Exit Network so we can identify appropriate test cases and hopefully get legal endorsement of this approach.
Lamar:
Wonderful job! Thank you!
What about calling EMTs and the local police or rescue squad?
Whenever EMTs are summoned, they often brush past people who display or call attention to a DNR or POLST or other advance directive. In order to go about their business, EMTs totally disregard any such documentation or admonition to the contrary.
The training which these often-wonderful emergency responders receive makes them oblivious to any such “distractions” from their single-minded attention to the process of their attempting to revive the victim of their ministrations, even though like you they have been absolutely clear about their intentions under these extreme but covered circumstances.
My recommendation is to include in your Supplemental Directive some clear instruction, like “DO NOT CALL ANY EMT [Emergency Medical Technician] OR THE LOCAL POLICE OR RESCUE SQUAD,” because any of these worthies will operate as though they are in charge of the situation.
Then, obviously, it’s essential to inform [caution] family members and caregivers to honor your stated intention = NOT to call EMTs, police, or rescue squad. This is a matter of life and death. Often those intending life cause significant distress to the victim and those who care about her or him.
I agree that care should be taken with who is called after a death has occurred. I anticipate that by the time I am three or four days into VSED, I will be qualified for hospice, if I haven’t qualified before that time. In Texas, hospice nurses are allowed to pronounce a death, which means that no authorities need be called to verify the death, so there would be no need to call EMS (or EMT) or the police or any other public authority.
Here are two articles from Oregon that show why having a clear directive about hand-feeding is necessary to have your wishes about end-of-life care implemented:
Despite Advance Directive Dementia Patient Denied Last Wish, Says Spouse:
https://khn.org/news/despite-advance-directive-dementia-patient-denied-last-wish-says-spouse/
Dementia Patient At Center of Spoon-Feeding Controversy Dies
https://khn.org/news/dementia-patient-at-center-of-spoon-feeding-controversy-dies/